It's the time of year, the time when we celebrate the birth of a miracle child, a child who came in the midst of chaos. In our own lives, we may search for signs of Jesus in the midst of chaos. Advent. Watch and wait.
Over a month ago, a series of viruses started in my family. It was the chaos of our lives during Advent.
Sore throat. Sniff. Cough. Elephant on chest.
"Mom, my ear hurts. It really hurts."
(Clinic): "You have waited patiently for 2 hours. We can see you now."
"I can't hear you. My ears are clogged. Can you speak up?"
"I can't speak up. My voice is gone."
(From the outside) "Haven't you had this for awhile?"
"It's ok, Beth. 2 other people can't come to work today. They are also home sick."
"Can you look in my eyes to make sure I don't have pink eye?"
"I can't make physical therapy tomorrow. I was ok yesterday but this morning I have a slight fever."
"I can squeak out a D when singing, but that won't allow me to sing the Christmas Cantata."
"Well, I am trying not to get any of this." (husband) ............2 days later. "My throat hurts." Sniff. Cough. Elephant on chest. "Wow, my ear hurts. It feels like I am in outer space."
It's Advent. Time to search for Jesus in our lives. Where do we see Jesus? Jesus is holding our hand as we struggle to get through this difficult time. But other glimpses begin to occur.
--------------------------------------------------------------------------------------------------
3 weeks after I got the nasty mystery virus, I went to physical therapy (PT). How I bounced back I don't know. On Tuesday, I walked 1.3 miles per hour (mph) with no problem. That felt very strange.
So on Friday, I asked, "Can I try to walk 1.4 mph just for a few seconds?"
15 minutes later, I had continued that walking at 1.4 mph for the whole 15 minutes.
And not only that, but at 7:30, I felt a miracle. It's there. Yes, I am certain that this is what I remember. This is runner's high. I am now 42 years old. The last time I had a runner's high was when I was 19.
I remember that last time. I was coming back from an 8 mile run with my college cross country coach and my good friend who was with me when I was diagnosed with MS at age 20. She told me there was no way I could beat "Coach" going downhill to the end of the run. But I loved running downhill. Watch out! I took off and felt like the wind - nothing could stop me. Back then it was an amazing feeling.
And now? The feeling that I could keep going forever was even more powerful. On the treadmill, I suddenly realized I had that awesome feeling that can't be described. I finished my workout and proclaimed with great joy that I just had a runner's high. I'll never forget that. MS can take a lot, but it can't take that brief, amazing period. Later that day I cried tears of joy.
Today, Tuesday again, I had my end-of-year speed test. About 2 months ago I walked a third of the speed of an average person. Today I walked about half the speed of an average person. That means (humor inserted here) I could make it halfway across a street in one light cycle. I could make it across in just 2 cycles, stopping in the middle. That is something.
I saw another woman working out today and said, "Wow, she is doing really well."
"You will get there, Beth."
I don't know/. It's a long way to go. There will be so much in between.
--------------------------------------------------------------------------------------------------------------
This random awesome walking occurred in the midst of chaos, where so many people are sick. And for some, it doesn't mean anything.
But for me, it's one of those times I find Jesus. I found Jesus. I found Jesus in many other small ways also - not necessarily where something went right.
Watch and wait. The time is almost here. And if we look, we will find our own moments.
And in the midst of chaos, there is a baby born in a manger.
Peace.
Tuesday, December 23, 2014
Saturday, November 15, 2014
Remembering Charlie
Earlier this week, I randomly decided I needed to hear a song that is on a CD player in my car. It is a song given to me as background music for a DVD of me skiing. I needed to email him a picture that showed me skiing the way he taught me. I really needed to do that before ski season started again. But just a few days later, I got an email that Charlie had died.
There are those people in our lives who help us do things we didn't believe we could do. They have a unique ability to connect with us; to simplify things in order to make those things possible. Charlie was one of those people.
Charlie was my ski instructor for many, many years, and Charlie taught me to handcycle. Without him as a teacher, I would never have really understood handcycling. Without him as a ski instructor, I would never have understood how skiing works. Although what I do for a living involves a lot of thinking, I often tell people that outside of work, I need very simple explanations for things. Charlie took skiing and handcycling down to the simplest level, and that is how I learned. To this day I have Charlie's voice in my head when skiing and handcycling, telling me to "look downhill!" or sarcastically asking me, "Where you lookin?"
One summer Charlie convinced me to come to a handcycling camp up in Keystone. "I can't really handcycle," I said. "I don't get it." Charlie showed up at that camp and I asked him, "So, who are you going to teach?" "Well," he said, "that would be you. Someone has to do it." I got on a handcycle that morning, determined that 2 previous attempts at handcycling had failed so this wasn't going to work either. But then Charlie said, "it's just like skiing. It's all about moving your hips to turn." So I used my hips, which started to help a bit, and then he said, "it's just like skiing. You can't just tilt your neck to the side and expect your body to follow." A ha! This really was like skiing. Before the morning was done, Charlie had chased me around a small circle tons of times, yelling at me to use my hips and not my neck. I got it. That afternoon, Charlie and I rode together, me on a handcycle and Charlie on a recumbent bike. I bought my own handcycle; I rode up Vail Pass on it; and Charlie was there to meet me. Charlie was a definite father figure to me.
Handcycling started after skiing. I had skied before Lori was born but not too much. After she was born I really grew to love skiing. Charlie was my first instructor in skiing, and for many years, I would request to have him as an instructor. In fact, I didn't need to request him because everyone knew it was a good fit. I never had thought I would ski on my own, off tethers, until Charlie said, "let's try this top part without the tether on." Tethers keep sit-skis attached to instructors, so instructors can correct things that sit-skiers might do wrong.
But what?!! Seriously? And so I was coaxed down the hill. Charlie was very good at skiing backward. He would get in front of me and then ski backwards, telling me to follow his tracks. Just like handcycling, hips are used to turn when sit skiing. If you use your eyes and neck, it doesn't work. In moments of panic, I would look in the direction I wanted to look and crane my neck in that way. "Look down here!" Charlie would yell. It was often too late; I would find myself falling and looking at the sky. He would ski back to me and proclaim, "Now, where were you looking?"
Charlie would also tell me when to turn and where. I found this annoying and would sometimes do my own thing, which generally ended in disaster. That would be followed by, "Why did you go that way?"
Once Charlie got me going down a green (easiest) slope on my own, he really tried to get me to ski blue slopes on my own, always emphasizing he wanted me to be independent. And I did get through some of those blues. When a photographer for USA Today came to take pictures, Charlie skied backward down a more difficult part of a green slope, telling me exactly where to turn. I got my photo in the USA Today. No one knew it was with Charlie, right there.
Besides instruction, Charlie was a great friend. We would eat lunch together in the middle of the ski day. He always had radishes, carrots, and soup. I always found that to be a bit odd.
Charlie videotaped me skiing and then put a whole season of ski videos to music on a DVD. Who does that?!! Cutting and pasting a bunch of skiing to songs took time. Once my daughter started skiing, she said she wanted him to videotape her skiing and put it to music. And he did. We still have those DVDs.
Charlie also made calendars every year for certain people. I was one of the people. He was a great photographer and the pictures in the calendar were stunning pictures of flowers or mountains. One year he made the calendar of pictures of me skiing and handcycling. I still have the calendars. They are beautiful.
And so the story goes. Charlie and I never discussed religion, strangely, because we discussed so much on the lift rides. He would always joke that at work I was the boss but would never have that title. I tried to get him to tell me about his family, but that seemed difficult for him. As the years passed, it got easier. No matter what, I could tell that he loved his daughters. At one point he discovered he has grandchildren and he was very happy about that. He had a few other jobs besides being a ski instructor, but he loved ski instructing the best, I think. He had his own sit-ski because he had bad knees. And he loved his motorcycle which he could ride in the off-season. He couldn't wait to get it out in the spring.
And so Charlie is gone. I didn't get to send him that photo. I didn't get to tell him how much easier handcycling is with increased core muscle strength. I didn't get to touch base. And for some reason that is hard.
But I still have the DVD and the main song (even though I hate country music) that had the things below to say. As I come out of the main (Eisenhower) tunnel, I always listen to this song to try to get ready, mentally, for skiing. It tells me to make the most of what I have today, that today will not last forever, but that I have come so far to get to the unanticipated today (even though it doesn't seem like it). And past today, I will get even further, even while I'm spending my time "like it's going out of style."
Thank you, Charlie, for the many gifts you gave me. I will miss you but I know you will always be on the slopes and bike paths with me, telling me to look down the hills, and when I don't get it right, asking me where I was looking. We had some great times. We really did. I can handcyle. I really can. You, my friend, are remarkable.
Peace.
How can we know how far,
The long way can be?
Looking from where we are,
It never seemed that long to me.
I've many miles behind me,
Maybe not so much ahead.
It seems I made good time,
With the directions I misread.
So I'm gonna spend my time,
Like it's going out of style.
I'm moving the bottom line,
Farther than a country mile.
I still have hills to climb,
Before I hit that wall.
No matter how much time I buy,
I can never spend it all.
Funny thing, that time:
We're always running out.
I'm always losing mine,
There's not enough of it about.
An' though it's always here,
It will always come and go.
The days become the years,
That'll be gone before you know.
So I'm gonna spend my time,
Like it's going out of style.
I'm moving the bottom line,
Better than a country mile.
I still have hills to climb,
Before I hit that wall.
I won't go quietly into that dark night.
There'll be no more burnin' daylight.
I'll be living in,
Every moment that I'm in.
Oh,I'm gonna spend my time,
Like it's going out of style.
I'll only use what's mine,
I've been savin' for a while.
I still have hills to climb,
Before I hit that wall.
No matter how much time I buy,
I can never spend it all.
No matter how much time we buy,
We can never spend it all.
I'm gonna spend my time.
I'm gonna spend my time.
There are those people in our lives who help us do things we didn't believe we could do. They have a unique ability to connect with us; to simplify things in order to make those things possible. Charlie was one of those people.
Charlie was my ski instructor for many, many years, and Charlie taught me to handcycle. Without him as a teacher, I would never have really understood handcycling. Without him as a ski instructor, I would never have understood how skiing works. Although what I do for a living involves a lot of thinking, I often tell people that outside of work, I need very simple explanations for things. Charlie took skiing and handcycling down to the simplest level, and that is how I learned. To this day I have Charlie's voice in my head when skiing and handcycling, telling me to "look downhill!" or sarcastically asking me, "Where you lookin?"
One summer Charlie convinced me to come to a handcycling camp up in Keystone. "I can't really handcycle," I said. "I don't get it." Charlie showed up at that camp and I asked him, "So, who are you going to teach?" "Well," he said, "that would be you. Someone has to do it." I got on a handcycle that morning, determined that 2 previous attempts at handcycling had failed so this wasn't going to work either. But then Charlie said, "it's just like skiing. It's all about moving your hips to turn." So I used my hips, which started to help a bit, and then he said, "it's just like skiing. You can't just tilt your neck to the side and expect your body to follow." A ha! This really was like skiing. Before the morning was done, Charlie had chased me around a small circle tons of times, yelling at me to use my hips and not my neck. I got it. That afternoon, Charlie and I rode together, me on a handcycle and Charlie on a recumbent bike. I bought my own handcycle; I rode up Vail Pass on it; and Charlie was there to meet me. Charlie was a definite father figure to me.
Handcycling started after skiing. I had skied before Lori was born but not too much. After she was born I really grew to love skiing. Charlie was my first instructor in skiing, and for many years, I would request to have him as an instructor. In fact, I didn't need to request him because everyone knew it was a good fit. I never had thought I would ski on my own, off tethers, until Charlie said, "let's try this top part without the tether on." Tethers keep sit-skis attached to instructors, so instructors can correct things that sit-skiers might do wrong.
But what?!! Seriously? And so I was coaxed down the hill. Charlie was very good at skiing backward. He would get in front of me and then ski backwards, telling me to follow his tracks. Just like handcycling, hips are used to turn when sit skiing. If you use your eyes and neck, it doesn't work. In moments of panic, I would look in the direction I wanted to look and crane my neck in that way. "Look down here!" Charlie would yell. It was often too late; I would find myself falling and looking at the sky. He would ski back to me and proclaim, "Now, where were you looking?"
Charlie would also tell me when to turn and where. I found this annoying and would sometimes do my own thing, which generally ended in disaster. That would be followed by, "Why did you go that way?"
Once Charlie got me going down a green (easiest) slope on my own, he really tried to get me to ski blue slopes on my own, always emphasizing he wanted me to be independent. And I did get through some of those blues. When a photographer for USA Today came to take pictures, Charlie skied backward down a more difficult part of a green slope, telling me exactly where to turn. I got my photo in the USA Today. No one knew it was with Charlie, right there.
Besides instruction, Charlie was a great friend. We would eat lunch together in the middle of the ski day. He always had radishes, carrots, and soup. I always found that to be a bit odd.
Charlie videotaped me skiing and then put a whole season of ski videos to music on a DVD. Who does that?!! Cutting and pasting a bunch of skiing to songs took time. Once my daughter started skiing, she said she wanted him to videotape her skiing and put it to music. And he did. We still have those DVDs.
Charlie also made calendars every year for certain people. I was one of the people. He was a great photographer and the pictures in the calendar were stunning pictures of flowers or mountains. One year he made the calendar of pictures of me skiing and handcycling. I still have the calendars. They are beautiful.
And so the story goes. Charlie and I never discussed religion, strangely, because we discussed so much on the lift rides. He would always joke that at work I was the boss but would never have that title. I tried to get him to tell me about his family, but that seemed difficult for him. As the years passed, it got easier. No matter what, I could tell that he loved his daughters. At one point he discovered he has grandchildren and he was very happy about that. He had a few other jobs besides being a ski instructor, but he loved ski instructing the best, I think. He had his own sit-ski because he had bad knees. And he loved his motorcycle which he could ride in the off-season. He couldn't wait to get it out in the spring.
And so Charlie is gone. I didn't get to send him that photo. I didn't get to tell him how much easier handcycling is with increased core muscle strength. I didn't get to touch base. And for some reason that is hard.
But I still have the DVD and the main song (even though I hate country music) that had the things below to say. As I come out of the main (Eisenhower) tunnel, I always listen to this song to try to get ready, mentally, for skiing. It tells me to make the most of what I have today, that today will not last forever, but that I have come so far to get to the unanticipated today (even though it doesn't seem like it). And past today, I will get even further, even while I'm spending my time "like it's going out of style."
Thank you, Charlie, for the many gifts you gave me. I will miss you but I know you will always be on the slopes and bike paths with me, telling me to look down the hills, and when I don't get it right, asking me where I was looking. We had some great times. We really did. I can handcyle. I really can. You, my friend, are remarkable.
Peace.
How can we know how far,
The long way can be?
Looking from where we are,
It never seemed that long to me.
I've many miles behind me,
Maybe not so much ahead.
It seems I made good time,
With the directions I misread.
So I'm gonna spend my time,
Like it's going out of style.
I'm moving the bottom line,
Farther than a country mile.
I still have hills to climb,
Before I hit that wall.
No matter how much time I buy,
I can never spend it all.
Funny thing, that time:
We're always running out.
I'm always losing mine,
There's not enough of it about.
An' though it's always here,
It will always come and go.
The days become the years,
That'll be gone before you know.
So I'm gonna spend my time,
Like it's going out of style.
I'm moving the bottom line,
Better than a country mile.
I still have hills to climb,
Before I hit that wall.
I won't go quietly into that dark night.
There'll be no more burnin' daylight.
I'll be living in,
Every moment that I'm in.
Oh,I'm gonna spend my time,
Like it's going out of style.
I'll only use what's mine,
I've been savin' for a while.
I still have hills to climb,
Before I hit that wall.
No matter how much time I buy,
I can never spend it all.
No matter how much time we buy,
We can never spend it all.
I'm gonna spend my time.
I'm gonna spend my time.
Sunday, October 26, 2014
Getting my legs back
"I hate this €{?.€~*!!! thing!" I exclaimed recently, when struggling to put on my old black, ugly, obnoxious AFO brace before work. I was using it instead of the right side of my Bioness, because the controller for the right side of the Bioness had developed a crack, rendering the whole right side non-functional, making me frustrated and angry after discovering the replacement part was on back order in Israel. I mean, really? It's October... the best training month for me. It's training time! Why did a crack have to develop now, and why were they on back order in Israel? What a disaster. Poor me. It seemed that my right leg was in Israel, and I didn't know when I might get it back.
Bob was what I named that AFO brace, what I used before the Bioness, "Nessy." Since I started using Nessy, I had developed a deep hatred for Bob. Bob was hidden in a closet. Bob used to help me lift my toes. When I first used Bob, he gave me enough control of my right leg to walk down a hill without falling. I remember being so excited by that. I could walk my dog down a hill again! I loved Bob!
But as I learned to use Nessy, I discovered that Bob was much different, and old-fashioned. Bob was designed to compensate for certain muscles which didn't work quite right. But over time, in using Bob to compensate for muscles, those muscles atrophied, so while Bob seemed to help, Bob wasn't, in my mind, the best choice to help with walking. But Bob and other AFO braces were what was available then.
That day, I was trying to put on a shoe plus Bob. It's not the best fit. In fact, most times putting shoes on with Bob results in swearing and yelling. With Bob, I can't stand straight at all either, because Bob is designed to not allow the knee to lock. More frustration. I also had Nessy on the left and Bob on the right... Awkward! Nessy triggers a leg muscle which causes the foot / leg to kick. Nessy is all about the leg. Bob? Bob compensates. Effectively using Bob involves lifting the hip. If walking didn't look awkward previously, it sure did with Nessy and Bob together! This wasn't fun at all. It did something to my back, so I had a huge self-pity party going with Nessy, Bob, and a sense of being "off." Poor me. I wanted things to equalize, so my gait pattern was the same on both sides.
Sooner than expected, a new Nessy controller arrived! Life was good. Bye, Bob. Well, he's part of my Halloween costume, so I am letting him hang out this week.
Recently I saw an article criticizing devices which may only incrementally help a person's gait. It seemed to indicate things like Nessy aren't worth it. The problem with these observations, done by people with limited thinking, in my opinion, is they look at, say, 16 weeks. A ha! In 16 weeks Nessy may not be much better than Bob! Why pay for these small increments? And the answer, of course, is time. My Nessies are 3 years old. It has taken 3 years, but my legs don't swing around like they did with Bob. My feet now land between the wheels of Bart (everything has a name!), my walker.
It's very similar to Ampyra. It was evaluated for short length of time to get approved, and it only helped a small percent of people (about 35 percent). Over time, like Nessy, Ampyra seems to build in effectiveness, and yet people do not seem to recognize this.
Recently, there was a series of articles on specialty drugs, discussing who should pay and how it should be determined which drugs are most effective. The study concluded by saying that policy-makers, pharmaceutical companies, and insurance companies would need to work together to figure things out. Who is missing? Where's the physician, the physical therapist, the consumer? Where are those voices, the voices that can give benefits over time?
My voice can tell you that over time, these new things are incredible. My voice can tell people it takes years, or may take years, to see huge benefits, to see the frustration of having to briefly go backward when we have come so very far. We need to continue to pursue these important things.
And so, out of experience, I try to follow this advice: "First they ignore you, then they laugh at you, then they fight, then you win." (Gandhi)
I have Nessy, my leg, back. Now it's time to show how important it is.
Peace.
Bob was what I named that AFO brace, what I used before the Bioness, "Nessy." Since I started using Nessy, I had developed a deep hatred for Bob. Bob was hidden in a closet. Bob used to help me lift my toes. When I first used Bob, he gave me enough control of my right leg to walk down a hill without falling. I remember being so excited by that. I could walk my dog down a hill again! I loved Bob!
But as I learned to use Nessy, I discovered that Bob was much different, and old-fashioned. Bob was designed to compensate for certain muscles which didn't work quite right. But over time, in using Bob to compensate for muscles, those muscles atrophied, so while Bob seemed to help, Bob wasn't, in my mind, the best choice to help with walking. But Bob and other AFO braces were what was available then.
That day, I was trying to put on a shoe plus Bob. It's not the best fit. In fact, most times putting shoes on with Bob results in swearing and yelling. With Bob, I can't stand straight at all either, because Bob is designed to not allow the knee to lock. More frustration. I also had Nessy on the left and Bob on the right... Awkward! Nessy triggers a leg muscle which causes the foot / leg to kick. Nessy is all about the leg. Bob? Bob compensates. Effectively using Bob involves lifting the hip. If walking didn't look awkward previously, it sure did with Nessy and Bob together! This wasn't fun at all. It did something to my back, so I had a huge self-pity party going with Nessy, Bob, and a sense of being "off." Poor me. I wanted things to equalize, so my gait pattern was the same on both sides.
Sooner than expected, a new Nessy controller arrived! Life was good. Bye, Bob. Well, he's part of my Halloween costume, so I am letting him hang out this week.
Recently I saw an article criticizing devices which may only incrementally help a person's gait. It seemed to indicate things like Nessy aren't worth it. The problem with these observations, done by people with limited thinking, in my opinion, is they look at, say, 16 weeks. A ha! In 16 weeks Nessy may not be much better than Bob! Why pay for these small increments? And the answer, of course, is time. My Nessies are 3 years old. It has taken 3 years, but my legs don't swing around like they did with Bob. My feet now land between the wheels of Bart (everything has a name!), my walker.
It's very similar to Ampyra. It was evaluated for short length of time to get approved, and it only helped a small percent of people (about 35 percent). Over time, like Nessy, Ampyra seems to build in effectiveness, and yet people do not seem to recognize this.
Recently, there was a series of articles on specialty drugs, discussing who should pay and how it should be determined which drugs are most effective. The study concluded by saying that policy-makers, pharmaceutical companies, and insurance companies would need to work together to figure things out. Who is missing? Where's the physician, the physical therapist, the consumer? Where are those voices, the voices that can give benefits over time?
My voice can tell you that over time, these new things are incredible. My voice can tell people it takes years, or may take years, to see huge benefits, to see the frustration of having to briefly go backward when we have come so very far. We need to continue to pursue these important things.
And so, out of experience, I try to follow this advice: "First they ignore you, then they laugh at you, then they fight, then you win." (Gandhi)
I have Nessy, my leg, back. Now it's time to show how important it is.
Peace.
Sunday, September 7, 2014
Doris
"Hi. What is your name?" I said.
That question was greeted with mistrust. But 10 minutes later, I learned the name Doris. Doris has Alzheimer's, a disease which can change a person's personality while at the same time, the person's memory fades, and family and friends learn to live "in the moment," capturing glimpses of the person we know and quite possibly have known for our entire lives.
Today a group from our church spent time with a group of people who are living with Alzheimer's. For me, it was a tough day, because although we caught glimpses of people and their lives, I knew they were glimpses, glimpses which become less frequent as time passes; glimpses I saw in someone I knew since birth, someone who was there when Lori was born; and someone whom I noticed, earlier than other non-family, that something was wrong.
Doris, at first untrusting, grew to trust me. She reminded me of the special person I knew. As Doris' sentences began but then trailed off, as she struggled to find the words. In those moments, I found myself again nodding as if I knew what she was saying or where she was going with her words.
She stood. She didn't want to sit. People would offer her a seat, but what I had first noticed about one of the most important people in my life, when things just didn't seem quite right, was that my offers for her to sit in my car were not really noticed. Eventually she sat. Eventually Doris sat. And neither person seemed to be cognizant that they were being offered a seat. That is, years ago, how I knew something was wrong with a person who cared for me more than anyone except my parents.
Lori also came to the center where people with Alzheimer's live. Lori volunteered for every potential role she could have, volunteering to sing, to lead, to introduce. She was herself, which was great to see, and she found moments with the residents in between times when she led us all through the visit.
And so tonight I found myself sitting on our deck, which is where I often find myself pondering things. I cried at the unfairness of Alzheimer's - how we see the personality of those we love change; how we see memory fade right before our eyes; how we search for moments that bring the person we know back to us, and how those memories fade with time.
And then there were other tears on the deck. They were in a sense tears of joy mixed with sadness. The joy was found in seeing Lori be herself; seeing Lori really step up, volunteer for everything, be in the middle of everything; seeing Lori absolutely love that role.
The tears came because it's been a tough summer for Lori, and in turn, for me. In so many places she has been told she is talented, to please come back because she is naturally gifted. In the midst of this summer of success she was told if she did x, then she would get y. She did x. She did not get y. And as a mother, I can't change promises from other people that are not true. All I can do is feel like someone continues to jab me with a knife, knowing that honesty is so important to me, and knowing I passed this importance to Lori.
Where do we go from here? I honestly don't know. For all the times this summer when Lori has been told she is talented at everything, to keep doing everything, it has all been overshadowed. To see her confidence today made me want to believe she will get over the difficult summer. And yet, it is not that easy. She and I both struggle, and while we want to keep going despite what has happened, it is very difficult.
As I sat on the deck, I wondered where God is in the midst of all of this. We watch and lose our loved ones to things like Alzheimer's; we find joy in success; and we find mystery and hardship in life when it takes unexpected, negative turns. People with Alzheimer's do not get better. We live in the moment with them. Ideally, we taken those moments and bring them to other areas of our lives where perhaps we are struggling. Then sometimes it can be very difficult to find moments of happiness amidst the chaos. We continue to ask God to help as we struggle through various parts of our lives. We continue to ask God to pull us through the difficult parts, where we feel we are being stabbed, and there seems to be no way out. God?
Peace.
That question was greeted with mistrust. But 10 minutes later, I learned the name Doris. Doris has Alzheimer's, a disease which can change a person's personality while at the same time, the person's memory fades, and family and friends learn to live "in the moment," capturing glimpses of the person we know and quite possibly have known for our entire lives.
Today a group from our church spent time with a group of people who are living with Alzheimer's. For me, it was a tough day, because although we caught glimpses of people and their lives, I knew they were glimpses, glimpses which become less frequent as time passes; glimpses I saw in someone I knew since birth, someone who was there when Lori was born; and someone whom I noticed, earlier than other non-family, that something was wrong.
Doris, at first untrusting, grew to trust me. She reminded me of the special person I knew. As Doris' sentences began but then trailed off, as she struggled to find the words. In those moments, I found myself again nodding as if I knew what she was saying or where she was going with her words.
She stood. She didn't want to sit. People would offer her a seat, but what I had first noticed about one of the most important people in my life, when things just didn't seem quite right, was that my offers for her to sit in my car were not really noticed. Eventually she sat. Eventually Doris sat. And neither person seemed to be cognizant that they were being offered a seat. That is, years ago, how I knew something was wrong with a person who cared for me more than anyone except my parents.
Lori also came to the center where people with Alzheimer's live. Lori volunteered for every potential role she could have, volunteering to sing, to lead, to introduce. She was herself, which was great to see, and she found moments with the residents in between times when she led us all through the visit.
And so tonight I found myself sitting on our deck, which is where I often find myself pondering things. I cried at the unfairness of Alzheimer's - how we see the personality of those we love change; how we see memory fade right before our eyes; how we search for moments that bring the person we know back to us, and how those memories fade with time.
And then there were other tears on the deck. They were in a sense tears of joy mixed with sadness. The joy was found in seeing Lori be herself; seeing Lori really step up, volunteer for everything, be in the middle of everything; seeing Lori absolutely love that role.
The tears came because it's been a tough summer for Lori, and in turn, for me. In so many places she has been told she is talented, to please come back because she is naturally gifted. In the midst of this summer of success she was told if she did x, then she would get y. She did x. She did not get y. And as a mother, I can't change promises from other people that are not true. All I can do is feel like someone continues to jab me with a knife, knowing that honesty is so important to me, and knowing I passed this importance to Lori.
Where do we go from here? I honestly don't know. For all the times this summer when Lori has been told she is talented at everything, to keep doing everything, it has all been overshadowed. To see her confidence today made me want to believe she will get over the difficult summer. And yet, it is not that easy. She and I both struggle, and while we want to keep going despite what has happened, it is very difficult.
As I sat on the deck, I wondered where God is in the midst of all of this. We watch and lose our loved ones to things like Alzheimer's; we find joy in success; and we find mystery and hardship in life when it takes unexpected, negative turns. People with Alzheimer's do not get better. We live in the moment with them. Ideally, we taken those moments and bring them to other areas of our lives where perhaps we are struggling. Then sometimes it can be very difficult to find moments of happiness amidst the chaos. We continue to ask God to help as we struggle through various parts of our lives. We continue to ask God to pull us through the difficult parts, where we feel we are being stabbed, and there seems to be no way out. God?
Peace.
Monday, September 1, 2014
Learning to live life through soccer
My daughter just started middle school. She is a great kid, but like most kids who are 11, she wants to be an adult, demands independence, and is at the same time still a little girl. She's much different than I was in middle school - very outgoing, an extrovert, and extremely creative. Even as she is an extrovert, I see her wanting her own "alone" time as she navigates through life - time for her own thoughts.
Tonight she had her weekly soccer practice. She plays on a rec team and is an excellent player - I can say this because I'm her biased mom, but also because I was a good soccer player and can see how much better she is than I was.
What struck me in watching her practice was her coach - I never realized how good he is. Throughout the practice I observed why he is so good.
Just as my daughter is in middle school, the other girls are also in fifth or sixth grade. The fifth graders are usually wearing pink and attempt to hang on the coach a bit. The sixth graders can be a bit more focused (although girls in both grades still do cartwheels and handstands when bored at practice). The coach has all different types of players on the team - from talented, good, learning, shy, not aggressive, etc.
What sets this coach aside from other coaches, teachers, instructors, etc. is his unique approach. Sure, others are similar. But he's a difficult act to follow.
He takes each kid where they are, makes them each feel important, gives each of them the same amount of feedback, and continues this throughout practice. He uniquely works with the "clingy" players by ignoring the "clinging" and instead focusing on their playing. He has no surprises for anyone - at each game, each player knows where they will play, each player knows they are respected for the gifts they bring to the game, and when players come to the sideline, he continues to teach, and in turn, the kids continue to learn.
I know today was a hard day for my daughter and that she has been sick for over a week, so I was unsure how she would do at practice. Surely she wouldn't give it 100 percent. And this is what is unique. She came to practice, and by his teaching, she gave 100 percent.
Sometimes I think we, as adults, expect kids to decide when they will "show up" to play, when they will show confidence and not hold back, when they will reach their potential. And then by who shows up at 100 percent, that will determine who is "better."
But from him, I learned we can't expect kids to do this alone. Each kid deserves to be valued. In some way, if a kid isn't giving 100 percent, if a kid is holding back, or if a kid isn't showing the confidence we think they should have, we shouldn't wait for it all to happen on its own. We need to be so engaged that we, as adults, can bring out the 100 percent; that we, as adults, can get kids not to hold back; that we, as adults, can bring out the confidence in kids that we know they must have.
We certainly can't expect every 11 year kid on a soccer team, going through so many life changes, to show up 100 percent ready to go on their own, and assume some kids are more interested than others. We can't expect that those who are hanging back are simply not ready. And we, as adults, must engage kids enough to give the kids as much confidence as we can give them. We can't expect that confidence will just, poof!, show up with time. And yet, so often, we do expect 100 percent, we assume kids are not ready (for fill in the blank), we assume kids just lack confidence... just because. We have to engage each and every kid, where they are, and bring them as far as possible.
And what my daughter's soccer coach does is just that. He thinks he gets good teams by luck. And he may to a certain degree. But his unique talent is to take every kid, where they are, find a way for them to leave the rest of their life off the field, find opportunities for them to play 100 percent, find ways to get kids ready to be the best part of the team that they can be, and find ways for each kid to develop as much confidence as possible. That's a gift.
And while this coach has that gift, he gives adults valuable lessons to learn. We should find ways for every kid to show their 100 percent. We should find ways to get each kid ready for whatever is next for them. And we should find ways for every single kid to develop the confidence that they all deserve to have.
Are we doing that? Often I think not.
But when we take responsibility for each kid, we can watch them all succeed in life, as God smiles.
Peace.
Tonight she had her weekly soccer practice. She plays on a rec team and is an excellent player - I can say this because I'm her biased mom, but also because I was a good soccer player and can see how much better she is than I was.
What struck me in watching her practice was her coach - I never realized how good he is. Throughout the practice I observed why he is so good.
Just as my daughter is in middle school, the other girls are also in fifth or sixth grade. The fifth graders are usually wearing pink and attempt to hang on the coach a bit. The sixth graders can be a bit more focused (although girls in both grades still do cartwheels and handstands when bored at practice). The coach has all different types of players on the team - from talented, good, learning, shy, not aggressive, etc.
What sets this coach aside from other coaches, teachers, instructors, etc. is his unique approach. Sure, others are similar. But he's a difficult act to follow.
He takes each kid where they are, makes them each feel important, gives each of them the same amount of feedback, and continues this throughout practice. He uniquely works with the "clingy" players by ignoring the "clinging" and instead focusing on their playing. He has no surprises for anyone - at each game, each player knows where they will play, each player knows they are respected for the gifts they bring to the game, and when players come to the sideline, he continues to teach, and in turn, the kids continue to learn.
I know today was a hard day for my daughter and that she has been sick for over a week, so I was unsure how she would do at practice. Surely she wouldn't give it 100 percent. And this is what is unique. She came to practice, and by his teaching, she gave 100 percent.
Sometimes I think we, as adults, expect kids to decide when they will "show up" to play, when they will show confidence and not hold back, when they will reach their potential. And then by who shows up at 100 percent, that will determine who is "better."
But from him, I learned we can't expect kids to do this alone. Each kid deserves to be valued. In some way, if a kid isn't giving 100 percent, if a kid is holding back, or if a kid isn't showing the confidence we think they should have, we shouldn't wait for it all to happen on its own. We need to be so engaged that we, as adults, can bring out the 100 percent; that we, as adults, can get kids not to hold back; that we, as adults, can bring out the confidence in kids that we know they must have.
We certainly can't expect every 11 year kid on a soccer team, going through so many life changes, to show up 100 percent ready to go on their own, and assume some kids are more interested than others. We can't expect that those who are hanging back are simply not ready. And we, as adults, must engage kids enough to give the kids as much confidence as we can give them. We can't expect that confidence will just, poof!, show up with time. And yet, so often, we do expect 100 percent, we assume kids are not ready (for fill in the blank), we assume kids just lack confidence... just because. We have to engage each and every kid, where they are, and bring them as far as possible.
And what my daughter's soccer coach does is just that. He thinks he gets good teams by luck. And he may to a certain degree. But his unique talent is to take every kid, where they are, find a way for them to leave the rest of their life off the field, find opportunities for them to play 100 percent, find ways to get kids ready to be the best part of the team that they can be, and find ways for each kid to develop as much confidence as possible. That's a gift.
And while this coach has that gift, he gives adults valuable lessons to learn. We should find ways for every kid to show their 100 percent. We should find ways to get each kid ready for whatever is next for them. And we should find ways for every single kid to develop the confidence that they all deserve to have.
Are we doing that? Often I think not.
But when we take responsibility for each kid, we can watch them all succeed in life, as God smiles.
Peace.
Sunday, August 10, 2014
Phamaly
I've had writer's block lately, but after a month, I have thought of something to write! And this blog layout is looking really messy. I plan to fix it someday........ but making things pretty is never at the top of my priority list.
Last night our family (3 of us) went to a production put on by Phamaly. Phamaly is a professional musical theater (they do plays as well) company whose actors all have at least one disability. They are always amazing. Last night's "Joseph and the Technicolor Dreamcoat" was no different.
The story is based on Joseph, from Genesis. Joseph is a dreamer and has a special "coat of many colors" given to him by his father. Thus, because he is the only one of his brothers with a special coat, his brothers despise him, sell him as a slave, and say he has died. Joseph (this is a brief summary!) rises through the ranks in Egypt, eventually gets back to where his brothers are, reveals himself, gets his coat back, and reunites with his father. The end.
Phamaly always gives a different "spin" to its productions. This time they started the musical with people in a mental institution, who have no hope of leaving, singing the song "Any Dream Will Do" (meaning they wish something good could happen in their lives). The story transitions to the Joseph story when someone appears to give the patients hope. The song "Any Dream Will Do" is gripping because it tells of the reality of many people with disabilities - that we can feel lost with our dreams completely out of reach, where perhaps what we want to do "when we grow up" may be impossible because of circumstances beyond our control - perhaps how people perceive people who use wheelchairs or walkers - perhaps how people perceive what others will think when seeing someone with a walker or wheelchair. We are perceived as not being able to do some things.The song brought tears quickly in this context, as I sat watching and relating the scene to my own life, to things that happen again and again and again, to me and others with disabilities, feeling stuck, wanting a dream to come true, wanting someone to hear us, and quite honestly, often feeling trapped. And then comes Joseph.
In the middle of the musical, Joseph is in jail after he is set up for a crime that he didn't commit. In prison, before he starts his rise in Egypt, he sings "Close Every Door," and just as earlier in the show, this song had a different feel to it when being done by Phamaly. Close Every Door felt like reality slapping me in the face, again, if I am totally honest. I should say I am lucky and have had many, many opportunities that I fully appreciate. But there are times, and very recent times, when it feels like every door is closed, there is no way out in a particular part of life - I am stuck in my own cell. And I know this happens to others. Once it was pointed out to me by someone else, because although I had somewhat recognized it, they saw it clearly, shook their head, and said, "it's not going to change." That was within the last 2 months.
While this all sounds negative, it really isn't. Watching this brought reality front and center, and helped me to feel that I am not alone in chasing seemingly impossible dreams and seeming to find every door closed.
After the production came the smiles, hugs, and happiness. I haven't seen a Phamaly production for 3 years. Things, life, got in the way. I forgot another part of why I love Phamaly. Afterward the actors came out to greet people. I got to see Leonard, who I have gotten to know just a bit over the years, and he gave me a big hug. I got to see Kelly, who uses a wheelchair, and we exchanged big hugs. In this setting, I felt at home, not different, and loved. I felt I belonged and that disability didn't matter, so different from watching the production. I wanted to cling to it all and not leave, but here I am, writing about it, without really explaining everything about my life, what dreams I chase, and what doors are closed, because quite simply, I can't write that here.
I am thankful for all the good things in my life, for all the people who care deeply about me, for all the people who have helped me make seemingly impossible dreams come true. And I am also thankful to Phamaly, for showing the reality that still exists for me and others with disabilities in society, because by showing what they showed, we begin to move toward the dreams and closed doors that right now are out of reach.
Peace.
Last night our family (3 of us) went to a production put on by Phamaly. Phamaly is a professional musical theater (they do plays as well) company whose actors all have at least one disability. They are always amazing. Last night's "Joseph and the Technicolor Dreamcoat" was no different.
The story is based on Joseph, from Genesis. Joseph is a dreamer and has a special "coat of many colors" given to him by his father. Thus, because he is the only one of his brothers with a special coat, his brothers despise him, sell him as a slave, and say he has died. Joseph (this is a brief summary!) rises through the ranks in Egypt, eventually gets back to where his brothers are, reveals himself, gets his coat back, and reunites with his father. The end.
Phamaly always gives a different "spin" to its productions. This time they started the musical with people in a mental institution, who have no hope of leaving, singing the song "Any Dream Will Do" (meaning they wish something good could happen in their lives). The story transitions to the Joseph story when someone appears to give the patients hope. The song "Any Dream Will Do" is gripping because it tells of the reality of many people with disabilities - that we can feel lost with our dreams completely out of reach, where perhaps what we want to do "when we grow up" may be impossible because of circumstances beyond our control - perhaps how people perceive people who use wheelchairs or walkers - perhaps how people perceive what others will think when seeing someone with a walker or wheelchair. We are perceived as not being able to do some things.The song brought tears quickly in this context, as I sat watching and relating the scene to my own life, to things that happen again and again and again, to me and others with disabilities, feeling stuck, wanting a dream to come true, wanting someone to hear us, and quite honestly, often feeling trapped. And then comes Joseph.
In the middle of the musical, Joseph is in jail after he is set up for a crime that he didn't commit. In prison, before he starts his rise in Egypt, he sings "Close Every Door," and just as earlier in the show, this song had a different feel to it when being done by Phamaly. Close Every Door felt like reality slapping me in the face, again, if I am totally honest. I should say I am lucky and have had many, many opportunities that I fully appreciate. But there are times, and very recent times, when it feels like every door is closed, there is no way out in a particular part of life - I am stuck in my own cell. And I know this happens to others. Once it was pointed out to me by someone else, because although I had somewhat recognized it, they saw it clearly, shook their head, and said, "it's not going to change." That was within the last 2 months.
While this all sounds negative, it really isn't. Watching this brought reality front and center, and helped me to feel that I am not alone in chasing seemingly impossible dreams and seeming to find every door closed.
After the production came the smiles, hugs, and happiness. I haven't seen a Phamaly production for 3 years. Things, life, got in the way. I forgot another part of why I love Phamaly. Afterward the actors came out to greet people. I got to see Leonard, who I have gotten to know just a bit over the years, and he gave me a big hug. I got to see Kelly, who uses a wheelchair, and we exchanged big hugs. In this setting, I felt at home, not different, and loved. I felt I belonged and that disability didn't matter, so different from watching the production. I wanted to cling to it all and not leave, but here I am, writing about it, without really explaining everything about my life, what dreams I chase, and what doors are closed, because quite simply, I can't write that here.
I am thankful for all the good things in my life, for all the people who care deeply about me, for all the people who have helped me make seemingly impossible dreams come true. And I am also thankful to Phamaly, for showing the reality that still exists for me and others with disabilities in society, because by showing what they showed, we begin to move toward the dreams and closed doors that right now are out of reach.
Peace.
Tuesday, July 8, 2014
How to define "the best?"
As per previous posts, I've been working on walking using a specialized treadmill called the Alter G. The treadmill was designed by NASA and supports 25 percent of my body weight when I walk. I started very slowly and have worked up both my speed and time, so now I can walk 1.1 miles per hour (no laughing!) for 16 or 17 minutes.
I actually started at .6 miles per hour, because every step really has to be perfect. Both feet have to land on the treadmill (swinging of legs outside the treadmill won't work). Every step has to have a heel strike, because that triggers my Bioness devices to help my legs kick. To effectively do this takes a lot of different things. People where I go know that I need 100 percent concentration. No one talks to me. I count steps because it helps me focus. There's also a camera that allows me to see the front of my feet, so I can see if my steps are too short, if I'm not lifting my foot enough, etc.
For people who walk and have no problems, just take my word that a lot is involved.
At every speed, as I have increased my speed, I seem to reach a point where the speed feels too slow, walking is too easy, or walking is actually more difficult because I am going more slowly. When I increase the speed, and then have to push myself very hard to finish, at the end my legs totally buckle beneath me.
I reached 1.0 miles per hour not long ago. The last time I walked at that 1.0, late last week, I felt better than ever. I felt like my walking had a flow - it really felt like walking as opposed to feeling like kicking these things (legs) in front of my body and somehow moving forward. Walking felt natural... I had somewhat of a "runner's high" and there were no times when I missed a heel strike in the whole 17 minutes. It felt "the best." And so?
And so I knew I had increase the speed. That happened this morning. I increased the speed from 1.0 to 1.1 miles per hour (yes, this is a big deal if you are me). That would be pushing things too much. At first I honestly thought maybe I should just skip to 1.2 miles per hour. 7 minutes into this walk, I felt hot. Usually that takes until 9 or 10 minutes and I have to fight the heat that my body hates. 7 minutes was early to feel hot. My walking felt a bit shaky, not totally there, with some near misses that can result in having to stop. I kept counting and focusing I desparately wanted to it at this new speed - to push as hard as I could.
I made it, flailing in the final seconds before 16 minutes. In fact, my legs collapsed at the end, so we inflated the machine to hold me for a minute while my legs decided to hold me again. Even then, my legs were very weak but somehow I walked off the treadmill and collapsed in a chair - the chair they brought close to me because my legs were so tired.
What a mess. But then again, was it a mess? Or was it "the best?" I'm thinking it was "the best," because it meant I pushed to the very limit, until there was absolutely nothing left, my mind overcoming rubber band legs that had absolutely nothing left in them.
I have to think that all the times when I ran my fastest times years ago and amazed myself; all the times when I did well in music or well in school - those were great. They were "the best." But when it really comes down to it, the very best happens on a day like today, when no one is really there, except the people at physical therapy who help me, and they are probably the best cheerleaders of all time. Today was the best, and hopefully there are more best days to come.
On a sidenote, after I was done there was a realization that the air conditioning wasn't on. I don't know how hot it was in there, but I bet it was over my limit of 74 degrees, and it was humid too, so fighting those obstacles was an additional challenge.
Peace.
I actually started at .6 miles per hour, because every step really has to be perfect. Both feet have to land on the treadmill (swinging of legs outside the treadmill won't work). Every step has to have a heel strike, because that triggers my Bioness devices to help my legs kick. To effectively do this takes a lot of different things. People where I go know that I need 100 percent concentration. No one talks to me. I count steps because it helps me focus. There's also a camera that allows me to see the front of my feet, so I can see if my steps are too short, if I'm not lifting my foot enough, etc.
For people who walk and have no problems, just take my word that a lot is involved.
At every speed, as I have increased my speed, I seem to reach a point where the speed feels too slow, walking is too easy, or walking is actually more difficult because I am going more slowly. When I increase the speed, and then have to push myself very hard to finish, at the end my legs totally buckle beneath me.
I reached 1.0 miles per hour not long ago. The last time I walked at that 1.0, late last week, I felt better than ever. I felt like my walking had a flow - it really felt like walking as opposed to feeling like kicking these things (legs) in front of my body and somehow moving forward. Walking felt natural... I had somewhat of a "runner's high" and there were no times when I missed a heel strike in the whole 17 minutes. It felt "the best." And so?
And so I knew I had increase the speed. That happened this morning. I increased the speed from 1.0 to 1.1 miles per hour (yes, this is a big deal if you are me). That would be pushing things too much. At first I honestly thought maybe I should just skip to 1.2 miles per hour. 7 minutes into this walk, I felt hot. Usually that takes until 9 or 10 minutes and I have to fight the heat that my body hates. 7 minutes was early to feel hot. My walking felt a bit shaky, not totally there, with some near misses that can result in having to stop. I kept counting and focusing I desparately wanted to it at this new speed - to push as hard as I could.
I made it, flailing in the final seconds before 16 minutes. In fact, my legs collapsed at the end, so we inflated the machine to hold me for a minute while my legs decided to hold me again. Even then, my legs were very weak but somehow I walked off the treadmill and collapsed in a chair - the chair they brought close to me because my legs were so tired.
What a mess. But then again, was it a mess? Or was it "the best?" I'm thinking it was "the best," because it meant I pushed to the very limit, until there was absolutely nothing left, my mind overcoming rubber band legs that had absolutely nothing left in them.
I have to think that all the times when I ran my fastest times years ago and amazed myself; all the times when I did well in music or well in school - those were great. They were "the best." But when it really comes down to it, the very best happens on a day like today, when no one is really there, except the people at physical therapy who help me, and they are probably the best cheerleaders of all time. Today was the best, and hopefully there are more best days to come.
On a sidenote, after I was done there was a realization that the air conditioning wasn't on. I don't know how hot it was in there, but I bet it was over my limit of 74 degrees, and it was humid too, so fighting those obstacles was an additional challenge.
Peace.
Tuesday, June 10, 2014
4 miraculous, wonderful years
"Can you increase it to 1.0?" I asked my PT this morning. It was only my second time at that speed, and though 1.0 mph may seem slow, I started at .4 mph. And then, time to focus, one foot in front of the other. Each step on the treadmill has to be perfect or my legs will go flailing and the whole process needs to restart. 15 minutes of this.
14:07, 14:08, ugh, leg hiccup! (Insert profanity here!) Dang. With one minute left, I couldn't save the misstep. Only 1 minute. Restart. "Do you want to go 1 more minute?" asked my PT. I nodded. My legs were not happy. But I have come so far and they could go 1 more minute. At 16 minutes, I was done.
4 years ago today I went on steroids for an acute MS exaccerbation. I was really tired, and the tiny bit of walking I could do had been replaced by falling. These attacks came at least twice a year. They were, to put it mildly, no fun. The times were scary. I felt I was losing everything. Walking 50 feet was so hard. It was exhausting.
I have come so far.
I started taking Ampyra. Ampyra is not supposed to alter the course of MS. But as soon as I started taking Ampyra, my MS halted completely. 2 days after I started taking it, I knew something was different. I could stand longer. A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today. I moved from using "AFO" braces to investing in Bioness. AFOs allow muscles to atrify. Bioness builds muscle. I wish more people realized this, especially physicians.
I have come so far. Legs with big AFO braces would swing out and around for the 50 feet I could walk. Gradually with the Bioness my legs can go straight, one in front of the other.
It's not easy... It takes concentration. It takes time. But life isn't easy, and MS isn't easy. Learning to stand again isn't easy. Over 300 muscles are required to stand. And from standing, there is walking. I have come so far.
I can write again... I had been only able to write by using a fat pen. Every muscle has been helped by Ampyra.
Imagine the cord that connects a computer to an outlet. Say the cord gets chewed a bit by, say, a cat. The wire may be exposed. That's what has happened to a part of my spinal cord except it's not a cat that has done the chewing. We don't know what has been nchewing that cord for almost 25 years, from when I woke up in high school to strange feelings in my legs... and no one knew then.
There is an exposed wire. Without covering, that exposed wired doesn't connect signals reliably. This is MS. Ampyra works by connecting signals of the wire, while leaving the broken cord alone. But it works.
And I have come so far.
Where do we go from here? I don't know. I still don't know if I will be able to stand up tomorrow morning. But I am incredibly thankful for the last 4 miraculous years, of being able to stand each morning. I'm thankful that I never gave up on walking, because now walking is getting better. I am thankful to my family and friends who have always supported me.
This blog is about MS and faith. How does faith fit into this? I have not gone on other therapies for MS since I gave birth to our daughter who is now 11. I have relied on instinct to tell me what is right, and when. And I have relied on God to take me through all of this, which seems like a small part to the whole thing, but it's huge. God has been with me through everything.
I woke up this morning and stood. Then I walked somewhere between 15 and 16 minutes on a treadmill. Life is good.
Peace.
14:07, 14:08, ugh, leg hiccup! (Insert profanity here!) Dang. With one minute left, I couldn't save the misstep. Only 1 minute. Restart. "Do you want to go 1 more minute?" asked my PT. I nodded. My legs were not happy. But I have come so far and they could go 1 more minute. At 16 minutes, I was done.
4 years ago today I went on steroids for an acute MS exaccerbation. I was really tired, and the tiny bit of walking I could do had been replaced by falling. These attacks came at least twice a year. They were, to put it mildly, no fun. The times were scary. I felt I was losing everything. Walking 50 feet was so hard. It was exhausting.
I have come so far.
I started taking Ampyra. Ampyra is not supposed to alter the course of MS. But as soon as I started taking Ampyra, my MS halted completely. 2 days after I started taking it, I knew something was different. I could stand longer. A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today. I moved from using "AFO" braces to investing in Bioness. AFOs allow muscles to atrify. Bioness builds muscle. I wish more people realized this, especially physicians.
I have come so far. Legs with big AFO braces would swing out and around for the 50 feet I could walk. Gradually with the Bioness my legs can go straight, one in front of the other.
It's not easy... It takes concentration. It takes time. But life isn't easy, and MS isn't easy. Learning to stand again isn't easy. Over 300 muscles are required to stand. And from standing, there is walking. I have come so far.
I can write again... I had been only able to write by using a fat pen. Every muscle has been helped by Ampyra.
Imagine the cord that connects a computer to an outlet. Say the cord gets chewed a bit by, say, a cat. The wire may be exposed. That's what has happened to a part of my spinal cord except it's not a cat that has done the chewing. We don't know what has been nchewing that cord for almost 25 years, from when I woke up in high school to strange feelings in my legs... and no one knew then.
There is an exposed wire. Without covering, that exposed wired doesn't connect signals reliably. This is MS. Ampyra works by connecting signals of the wire, while leaving the broken cord alone. But it works.
And I have come so far.
Where do we go from here? I don't know. I still don't know if I will be able to stand up tomorrow morning. But I am incredibly thankful for the last 4 miraculous years, of being able to stand each morning. I'm thankful that I never gave up on walking, because now walking is getting better. I am thankful to my family and friends who have always supported me.
This blog is about MS and faith. How does faith fit into this? I have not gone on other therapies for MS since I gave birth to our daughter who is now 11. I have relied on instinct to tell me what is right, and when. And I have relied on God to take me through all of this, which seems like a small part to the whole thing, but it's huge. God has been with me through everything.
I woke up this morning and stood. Then I walked somewhere between 15 and 16 minutes on a treadmill. Life is good.
Peace.
Sunday, May 25, 2014
Remembering the Bolder Boulder
On Memorial Day each year there is a 10k race in Boulder, Colorado called the Bolder Boulder. Once I started really running in high school, I started doing the Bolder Boulder. It's a huge race that winds through the streets of Boulder and ends in the football stadium.
I love the Bolder Boulder. Runners and walkers are everywhere the morning of the race. Once in the neighborhood streets of Boulder the atmosphere is fun and relaxed. People sit outside their houses, put out lawn chairs, hook up hoses to spray runners who want to be sprayed, and so on. At other places along the course, there are various groups who perform, including belly dancers. It brings a calm to the race, something a bit uncommon for road races.
The first time I ran the Bolder Boulder was after my sophomore year of high school, and most of what I remember is being dropped off at the starting line and then meeting my parents in the stands of the football stadium where the race ends. After my junior year, I was placed in the top women's heat and ran well. My senior year was the best ever. The race also comes right after track season, so high school runners are still in shape. With all the stresses of my senior year done, I flew through the course, got a really high overall placement, and my best time (which I don't remember).
Time changes things and by the time I was ready to do the Bolder Boulder again, I had been diagnosed with MS (there was once I did it after high school and before I was diagnosed with MS, but I don't want to remember that). The goal then was to finish. I remember one year doing the Bolder Boulder with my mom and brother, running various parts.
I will never forget my last Bolder Boulder. I had my walking stick (a hiking stick) for when I would get tired, and I had my mom and my brother there with me. We started the race early despite being told to go back, but I knew we needed the extra time. By mile 5.5 or so of 6.2 miles, I knew I had very little left to give. Where is the stadium? How much further? My mom would go ahead, look, and come back to tell me. You see, I knew this was my last Bolder Boulder. I had said I wanted to do it just one more time, and I knew it carried a risk of falling, of not finishing - many risks. I made it to the final hill up before entering the stadium and I knew I had it.
As I entered the stadium, I was overwhelmed by the number of people and a few tears of joy marvel and joy surfaced. Years previously, almost no one would be in the stadium when I finished because I was one of the first to finish. This last year there was no sprint to the finish. I made my way gradually around the semi-track in the stadium, to the finish, where I finished. I made it - I finished my final Bolder Boulder. I didn't fall. No one can take all my Bolder Boulder memories from me - each one being important in its own way.
I think taking risks is important. The times I ran the Bolder Boulder in high school were so easy and are different types of memories, of times when I always ran faster outside the big track races. I always ran faster when all the pressure was removed. And during those times, I was really fast. There was little risk.
The times of risk involved doing the race with MS, when there were obstacles and uncertainty. And there are many obstacles and uncertainty in everything when MS is in the mix. Recently I've been doing physical therapy to help me stand straighter and to help me walk better and faster (see "The Bubble Machine" entry earlier). On the treadmill that I use in physical therapy, I have to decide whether to risk things like increasing speed, and the unknown associated with it. Will I fail? This past week I learned that rather than fail, I needed a higher speed. Walking faster was a bit easier and I was less tired at the end. There can be so many rewards to taking risks, and we don't know how far we can go until we try. Another risk in increasing the speed was there was a part of my Bioness needing a new battery. I determined when to take a step by watching a camera that is on my feet, so when I saw my left foot reach a certain spot, I knew to take a step. This added to the risk of increasing the speed on the treadmill.
This year for the MS Walk I also took a risk. I was asked if I would be willing to be interviewed as part of a television story. This was a risk because I am not comfortable with others seeing me walk. Me walking, on the news, was an emotional risk I didn't know if I wanted to take. I certainly didn't go waving my hand and asking to be interviewed and to be filmed walking. I did it - I'm glad they showcased me and that I took the risk, mainly so others may see the Bioness and consider trying it. The camera footage was excellent. The story was great; Bioness got its coverage. Here is the link:
http://denver.cbslocal.com/2014/05/03/about-1m-raised-at-this-years-walk-ms/
... Each Memorial Day I remember the Bolder Boulder. After the race is done, there is an honor to the military. And this is another great part of the race.
Thanks be to God for granting me the courage to take risks, to sometimes find failure, but most often to experience unexpected success.
Peace.
I love the Bolder Boulder. Runners and walkers are everywhere the morning of the race. Once in the neighborhood streets of Boulder the atmosphere is fun and relaxed. People sit outside their houses, put out lawn chairs, hook up hoses to spray runners who want to be sprayed, and so on. At other places along the course, there are various groups who perform, including belly dancers. It brings a calm to the race, something a bit uncommon for road races.
The first time I ran the Bolder Boulder was after my sophomore year of high school, and most of what I remember is being dropped off at the starting line and then meeting my parents in the stands of the football stadium where the race ends. After my junior year, I was placed in the top women's heat and ran well. My senior year was the best ever. The race also comes right after track season, so high school runners are still in shape. With all the stresses of my senior year done, I flew through the course, got a really high overall placement, and my best time (which I don't remember).
Time changes things and by the time I was ready to do the Bolder Boulder again, I had been diagnosed with MS (there was once I did it after high school and before I was diagnosed with MS, but I don't want to remember that). The goal then was to finish. I remember one year doing the Bolder Boulder with my mom and brother, running various parts.
I will never forget my last Bolder Boulder. I had my walking stick (a hiking stick) for when I would get tired, and I had my mom and my brother there with me. We started the race early despite being told to go back, but I knew we needed the extra time. By mile 5.5 or so of 6.2 miles, I knew I had very little left to give. Where is the stadium? How much further? My mom would go ahead, look, and come back to tell me. You see, I knew this was my last Bolder Boulder. I had said I wanted to do it just one more time, and I knew it carried a risk of falling, of not finishing - many risks. I made it to the final hill up before entering the stadium and I knew I had it.
As I entered the stadium, I was overwhelmed by the number of people and a few tears of joy marvel and joy surfaced. Years previously, almost no one would be in the stadium when I finished because I was one of the first to finish. This last year there was no sprint to the finish. I made my way gradually around the semi-track in the stadium, to the finish, where I finished. I made it - I finished my final Bolder Boulder. I didn't fall. No one can take all my Bolder Boulder memories from me - each one being important in its own way.
I think taking risks is important. The times I ran the Bolder Boulder in high school were so easy and are different types of memories, of times when I always ran faster outside the big track races. I always ran faster when all the pressure was removed. And during those times, I was really fast. There was little risk.
The times of risk involved doing the race with MS, when there were obstacles and uncertainty. And there are many obstacles and uncertainty in everything when MS is in the mix. Recently I've been doing physical therapy to help me stand straighter and to help me walk better and faster (see "The Bubble Machine" entry earlier). On the treadmill that I use in physical therapy, I have to decide whether to risk things like increasing speed, and the unknown associated with it. Will I fail? This past week I learned that rather than fail, I needed a higher speed. Walking faster was a bit easier and I was less tired at the end. There can be so many rewards to taking risks, and we don't know how far we can go until we try. Another risk in increasing the speed was there was a part of my Bioness needing a new battery. I determined when to take a step by watching a camera that is on my feet, so when I saw my left foot reach a certain spot, I knew to take a step. This added to the risk of increasing the speed on the treadmill.
This year for the MS Walk I also took a risk. I was asked if I would be willing to be interviewed as part of a television story. This was a risk because I am not comfortable with others seeing me walk. Me walking, on the news, was an emotional risk I didn't know if I wanted to take. I certainly didn't go waving my hand and asking to be interviewed and to be filmed walking. I did it - I'm glad they showcased me and that I took the risk, mainly so others may see the Bioness and consider trying it. The camera footage was excellent. The story was great; Bioness got its coverage. Here is the link:
http://denver.cbslocal.com/2014/05/03/about-1m-raised-at-this-years-walk-ms/
... Each Memorial Day I remember the Bolder Boulder. After the race is done, there is an honor to the military. And this is another great part of the race.
Thanks be to God for granting me the courage to take risks, to sometimes find failure, but most often to experience unexpected success.
Peace.
Thursday, May 1, 2014
It's a bit, ridiculous
I've been going through a new round of physical therapy (PT). Each round of PT is different and helps me with something to do with standing or walking. Each physical therapist has their own ideas, and they are all innovative and creative. Generally, they find ways for me to work on standing and walking better.
The sermon at church last week (yup, I do listen to them) was, in part, about our pastor and his job as a teenager which involved mowing huge fields. The field would be beautiful and the thought of mowing it seemed like it would make the field less beautiful. But when it was done, the field was beautiful, just in a different way. And then there were other steps where the field was beautiful, but at the end of each step, the field was still beautiful, but in a different way.
I later was thinking about how I am learning to walk again. One of the hardest parts is when people who don't know me, or who knew me long ago before MS, see me. My walk, I told my physical therapist, isn't a real walk. It's improved so much from 4 years ago, but it still is a bit, well, ridiculous to some people who see me.
This Saturday, at the MS Walk, I might be interviewed and might be on TV... related to the Bioness bionic devices on my legs. Again, I told my physical therapist, I think people think that people strap on the Bioness... and boom! They walk just like everyone else. So, I said, my walk looks ridiculous... not impressive.
I've been thinking about how the field got mowed and became more beautiful. In a strange way, learning to walk gets more "beautiful." I started mostly in my wheelchair, and I mostly leave it behind now to walk. To me and some others who know me, that itself is beautiful, even though it was replaced by an ugly walk. Each round of physical therapy seems like taking a bit of a risk to see what can happen. So far, each step has resulted in a less-ridiculous looking walk, or, alternatively, a more beautiful walk depending on perspective. There's a choice to leave the old behind and try something new. And it makes me think a bit about the field being mowed. How far will I go? I don't know. I actually think God doesn't know, but God takes me through the different "steps."
Back to the interview... it's to me, a risk. I told my physical therapist that it's not like I will just stand up and poof! Walk!! She nodded. There is so much to walking. My legs are now much better. The ridiculous part of me walking is me being bent. After that, it's an enormous sway going back and forth. It's ridiculous. And ridiciculous can be televised!
My physical therapist had a different perspective after I informed her 2 teammates had invisible MS. She remembered 2 people from when she was in college, people with MS, who couldn't walk at all. One was in her forties and the other in her fifties. And maybe my ridiculous walking is meant to reach a different group of people - maybe some people will see ridiculous. But, she said, maybe lots of people will see possibility, going from 10 steps to something more. And to that group, maybe the ridiculous walk will actually be beautiful. Maybe it will give them hope.
As a sidenote, you jst never know whar people are thinking about a sermon in church!
Peace.
The sermon at church last week (yup, I do listen to them) was, in part, about our pastor and his job as a teenager which involved mowing huge fields. The field would be beautiful and the thought of mowing it seemed like it would make the field less beautiful. But when it was done, the field was beautiful, just in a different way. And then there were other steps where the field was beautiful, but at the end of each step, the field was still beautiful, but in a different way.
I later was thinking about how I am learning to walk again. One of the hardest parts is when people who don't know me, or who knew me long ago before MS, see me. My walk, I told my physical therapist, isn't a real walk. It's improved so much from 4 years ago, but it still is a bit, well, ridiculous to some people who see me.
This Saturday, at the MS Walk, I might be interviewed and might be on TV... related to the Bioness bionic devices on my legs. Again, I told my physical therapist, I think people think that people strap on the Bioness... and boom! They walk just like everyone else. So, I said, my walk looks ridiculous... not impressive.
I've been thinking about how the field got mowed and became more beautiful. In a strange way, learning to walk gets more "beautiful." I started mostly in my wheelchair, and I mostly leave it behind now to walk. To me and some others who know me, that itself is beautiful, even though it was replaced by an ugly walk. Each round of physical therapy seems like taking a bit of a risk to see what can happen. So far, each step has resulted in a less-ridiculous looking walk, or, alternatively, a more beautiful walk depending on perspective. There's a choice to leave the old behind and try something new. And it makes me think a bit about the field being mowed. How far will I go? I don't know. I actually think God doesn't know, but God takes me through the different "steps."
Back to the interview... it's to me, a risk. I told my physical therapist that it's not like I will just stand up and poof! Walk!! She nodded. There is so much to walking. My legs are now much better. The ridiculous part of me walking is me being bent. After that, it's an enormous sway going back and forth. It's ridiculous. And ridiciculous can be televised!
My physical therapist had a different perspective after I informed her 2 teammates had invisible MS. She remembered 2 people from when she was in college, people with MS, who couldn't walk at all. One was in her forties and the other in her fifties. And maybe my ridiculous walking is meant to reach a different group of people - maybe some people will see ridiculous. But, she said, maybe lots of people will see possibility, going from 10 steps to something more. And to that group, maybe the ridiculous walk will actually be beautiful. Maybe it will give them hope.
As a sidenote, you jst never know whar people are thinking about a sermon in church!
Peace.
Thursday, April 3, 2014
The Bubble Machine
Although this blog is about "the bubble machine," which helps me to relearn to walk, it's that time of year when I am raising money for the MS Society by participating in the MS Walk. Here is the link to donate: http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Why should you donate (besides what it says when you click on the link?)?? Well, here is one of my stories. Without the MS Society, there might not be Ampyra, the medicine that has saved me in many ways.
To review (skip this paragraph if you know me!): I was diagnosed with MS over 20 years ago and I have had MS for almost 25 years. I had the kind where I got attacks (times where I was tired and couldn't walk) - they were every year, then every 6 months, then more often... with each attack I didn't fully recover physically. But I did continue with life and never stopped trying to push myself physically, which is why, I am told, I am walking as much as I am walking today. (Never give up.) Over 3.5 years ago I started on a medicine called Ampyra which is only supposed to help a person with MS walk better by 25%, and it only works for 40% of the people who try it. I started and knew within 2 days something was happening. I have continued to improve over the past 3.5 years in many more ways than walking - anything that involves muscles, and by much more than some silly 25%. 3 years ago I started using a gait-assisted treadmill which is a harness that holds the upper body while a person dangles over a treadmill and then the body is lowered to the point where feet touch the treadmill, and the person can walk without having to support their upper body (because of the harness). That was awesome. I kept improving and then got things called Bioness. They go around my calf muscles and shoot signals to the muscles that help me lift my toes. Rather than ugly leg braces I now have cool robotic devices. But they didn't work with the gait-assist treadmill for various reasons, so goodbye gait-assist treadmill. And then there was nothing really new to help, for awhile.
But there is now a bubble machine developed by NASA! It's called the Alter G and you can see a picture of it (though it's not a good picture!) here:
http://www.alterg.com/products/anti-gravity-treadmills/m320-f320/health-wellness
It's a treadmill, but rather than a harness, there is a bubble, and the whole thing works with the Bioness - explanation coming. First, there are shorts that go over pants and once pulled up, the bottom half of a bubble shape forms around the hips. After bubble shorts are on, I walk over "bubble wrapping," and onto a treadmill to get ready. While for anyone else, walking over what is like a small heap of rubber clothing would be easy, the heap looks big to me. Once on the treadmill, someone pulls the bubble wrapping I just stepped over, over the bubble shorts (they really need a better picture of this!) Then, like getting blood pressure taken, air is turned on and the bubble inflates. I seriously think it's like the process in Charlie and the Chocolate factory - where a kid inflates into a giant bubble gum thing or something - it feels like that. Once fully-inflated, a person's weight is determined. Then a certain amount of air is let out so the bubble machine only supports a certain percent of the person's weight. In a very small way it reminds me of how water in a swimming pool can hold a person up. And then, walk! Afterward, I feel a bit like I am floating all day. I couldn't do this previously because my legs didn't want to go straight, so I couldn't stay on a treadmill without someone guiding my legs. The Bioness requires me to put a certain amount of weight on the treadmill; I couldn't do that with the gait-assist treadmill.
The bubble machine is a next step for me. I didn't used to be able to use it because I needed basically 100% support of the gait-assist treadmill. And the next step comes at a time when I think why should people donate to the MS Society this year?
It's not just about me and getting better. It's about funding for research toward finding the cure for MS. It's about finding perhaps a vaccine so no one ever has to get MS. It's about continuing progress year after year, progress that cannot stop if we are ever going to kick this thing called MS.
So many people with disabilities never asked to have a disability - I have been reminded of that this week. With disability there is uncertainty: for me, will I be able to get up tomorrow morning?; for someone else, different uncertainties.
There are several certainties as well. God helps us through all this stuff. Family and friends help Persistence is important. And donating, no matter how much, is critical. Here's the link again:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Every little bit helps.
Peace.
Why should you donate (besides what it says when you click on the link?)?? Well, here is one of my stories. Without the MS Society, there might not be Ampyra, the medicine that has saved me in many ways.
To review (skip this paragraph if you know me!): I was diagnosed with MS over 20 years ago and I have had MS for almost 25 years. I had the kind where I got attacks (times where I was tired and couldn't walk) - they were every year, then every 6 months, then more often... with each attack I didn't fully recover physically. But I did continue with life and never stopped trying to push myself physically, which is why, I am told, I am walking as much as I am walking today. (Never give up.) Over 3.5 years ago I started on a medicine called Ampyra which is only supposed to help a person with MS walk better by 25%, and it only works for 40% of the people who try it. I started and knew within 2 days something was happening. I have continued to improve over the past 3.5 years in many more ways than walking - anything that involves muscles, and by much more than some silly 25%. 3 years ago I started using a gait-assisted treadmill which is a harness that holds the upper body while a person dangles over a treadmill and then the body is lowered to the point where feet touch the treadmill, and the person can walk without having to support their upper body (because of the harness). That was awesome. I kept improving and then got things called Bioness. They go around my calf muscles and shoot signals to the muscles that help me lift my toes. Rather than ugly leg braces I now have cool robotic devices. But they didn't work with the gait-assist treadmill for various reasons, so goodbye gait-assist treadmill. And then there was nothing really new to help, for awhile.
But there is now a bubble machine developed by NASA! It's called the Alter G and you can see a picture of it (though it's not a good picture!) here:
http://www.alterg.com/products/anti-gravity-treadmills/m320-f320/health-wellness
It's a treadmill, but rather than a harness, there is a bubble, and the whole thing works with the Bioness - explanation coming. First, there are shorts that go over pants and once pulled up, the bottom half of a bubble shape forms around the hips. After bubble shorts are on, I walk over "bubble wrapping," and onto a treadmill to get ready. While for anyone else, walking over what is like a small heap of rubber clothing would be easy, the heap looks big to me. Once on the treadmill, someone pulls the bubble wrapping I just stepped over, over the bubble shorts (they really need a better picture of this!) Then, like getting blood pressure taken, air is turned on and the bubble inflates. I seriously think it's like the process in Charlie and the Chocolate factory - where a kid inflates into a giant bubble gum thing or something - it feels like that. Once fully-inflated, a person's weight is determined. Then a certain amount of air is let out so the bubble machine only supports a certain percent of the person's weight. In a very small way it reminds me of how water in a swimming pool can hold a person up. And then, walk! Afterward, I feel a bit like I am floating all day. I couldn't do this previously because my legs didn't want to go straight, so I couldn't stay on a treadmill without someone guiding my legs. The Bioness requires me to put a certain amount of weight on the treadmill; I couldn't do that with the gait-assist treadmill.
The bubble machine is a next step for me. I didn't used to be able to use it because I needed basically 100% support of the gait-assist treadmill. And the next step comes at a time when I think why should people donate to the MS Society this year?
It's not just about me and getting better. It's about funding for research toward finding the cure for MS. It's about finding perhaps a vaccine so no one ever has to get MS. It's about continuing progress year after year, progress that cannot stop if we are ever going to kick this thing called MS.
So many people with disabilities never asked to have a disability - I have been reminded of that this week. With disability there is uncertainty: for me, will I be able to get up tomorrow morning?; for someone else, different uncertainties.
There are several certainties as well. God helps us through all this stuff. Family and friends help Persistence is important. And donating, no matter how much, is critical. Here's the link again:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Every little bit helps.
Peace.
Sunday, March 9, 2014
Focus
An 18 year old girl who was diagnosed with MS about 3 years ago is currently running remarkable times in cross-country. She talks about blocking out symptoms of MS such as numbness while running, until she reaches the finish line, at which time her legs collapse on her. Here's a link to the story:
http://deadspin.com/high-school-runner-with-multiple-sclerosis-races-until-1536597747
In reading her story and watching her race, it's obvious she has extreme focus. I think that is key to as much success as possible - extreme focus - all out as long as possible.
Recently my college choir was on their annual spring tour and they came through Colorado. They were amazing - I really loved to hear them and to see my college choir director again... old meaning that was long ago - I swear he looks like he never ages.
At the end of the concert, as per tradition, alumni get to go up and sing the school's "Kokosing Farewell" song with the choir. The Kokosing is a river which runs right next to the Kenyon College campus, just for context. It's a song sung at the end of many concerts, by many groups at Kenyon, so it has a lengthy tradition.
I wondered how it was going to work with me going up to sing with the choir, assuming they still had their tradition, which they did. I figured things would all work out. And they did - it was a matter of focus.
I walked up with Bart the walker and figured out a place to stand. Stop. Stand? I don't know when I last performed standing! But it's how things happen... there I was, standing, and we were all ready to sing... except I had to lock the wheels on the walker (good thing I just got them fixed!) so Bart didn't escape as he has been known to do very recently.
It definitely wasn't the best standing position, but there I was, suddenly realizing, dang! The Bioness beepers are still on and at any moment could send a signal to my leg to move. Not good. Focus.
I blocked it out. It's not a long song, but it was a long time for me to focus. I blocked out the Bioness. My body wanted to bend but I fought it with the focus of singing, even though I really wanted to lean. My mom took a video and you can't tell, but by the end of the "focused" singing, my arms were shaking. Once done, I had to walk back to my seat. Not a pretty walk. The focus was done and I was tired of standing.
I don't know that I planned on standing - I figured things would work out somehow. But I'm glad I did - it's easier to move with the music that way, and sitting always makes me feel like I'm separated from the group a bit.
The Kokosing Farewell - beautiful.
Much of what seems impossible is indeed possible.
Focus.
Peace.
http://deadspin.com/high-school-runner-with-multiple-sclerosis-races-until-1536597747
In reading her story and watching her race, it's obvious she has extreme focus. I think that is key to as much success as possible - extreme focus - all out as long as possible.
Recently my college choir was on their annual spring tour and they came through Colorado. They were amazing - I really loved to hear them and to see my college choir director again... old meaning that was long ago - I swear he looks like he never ages.
At the end of the concert, as per tradition, alumni get to go up and sing the school's "Kokosing Farewell" song with the choir. The Kokosing is a river which runs right next to the Kenyon College campus, just for context. It's a song sung at the end of many concerts, by many groups at Kenyon, so it has a lengthy tradition.
I wondered how it was going to work with me going up to sing with the choir, assuming they still had their tradition, which they did. I figured things would all work out. And they did - it was a matter of focus.
I walked up with Bart the walker and figured out a place to stand. Stop. Stand? I don't know when I last performed standing! But it's how things happen... there I was, standing, and we were all ready to sing... except I had to lock the wheels on the walker (good thing I just got them fixed!) so Bart didn't escape as he has been known to do very recently.
It definitely wasn't the best standing position, but there I was, suddenly realizing, dang! The Bioness beepers are still on and at any moment could send a signal to my leg to move. Not good. Focus.
I blocked it out. It's not a long song, but it was a long time for me to focus. I blocked out the Bioness. My body wanted to bend but I fought it with the focus of singing, even though I really wanted to lean. My mom took a video and you can't tell, but by the end of the "focused" singing, my arms were shaking. Once done, I had to walk back to my seat. Not a pretty walk. The focus was done and I was tired of standing.
I don't know that I planned on standing - I figured things would work out somehow. But I'm glad I did - it's easier to move with the music that way, and sitting always makes me feel like I'm separated from the group a bit.
The Kokosing Farewell - beautiful.
Much of what seems impossible is indeed possible.
Focus.
Peace.
Tuesday, February 25, 2014
Corn Chowder
Today someone told me, in the course of conversation, that I should make homemade corn chowder. I responded that I didn't have the time. The person responded that we all have the same amount of time, and then the person wondered why I didn't have time to make corn chowder. I told the person they should follow me around for a day. And I'll stop there. Really? Do people really think this way??
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
We do all have the same amount of time each day and we each somewhat decide how we want to spend it. If I could spend time any way I wanted and didn't have MS, I have to say corn chowder would be nowhere near the top of the list. I think I'd probably still run or do some kind of athletic activity; I'd probably still play the piano; I'd run around on errands; I'd have a different blog; I'd spend time looking for various articles on healthcare policy; and I'd probably still be a Facebook addict. Before that, I'd be a wife and mom... that doesn't change. I don't really enjoy cooking although I enjoy hearing how other people cook.
Suppose I did want to make corn chowder. I would now be at the store getting ingredients instead of writing this blog. It's cold out there! I would assemble my wheelchair, go get the ingredients, etc. Then I'd get home and have to figure a way to get them inside. Because fatigue is a major problem for me, this series of things would totally wipe me out. It's better to be home writing the blog, and then take a break to walk. If I went to the store, there would be no walking and I would have huge leg spasms all night.
I forgot - I'd need to know how to make corn chowder! Someone in Minnesota gave me an awesome recipe when I lived there, so I could get that book out, find paper and pen, and write the ingredients. That would be tiring too. It's between 4 and 7. That's the most tiring time for me. At 8pm my body wants to take a nap. So I have from 7-8pm and then at about 10pm Ampyra kicks in and my legs want to walk, so I walk and do a bunch of leg exercises.
Another day I'd make the corn chowder. Because my shoulder is never going to be ok again, it would be hard to put everything together. The action of pouring things hurts my shoulder a lot. And I would be tired. I would have to cancel a walking session and I value those. And really, cooking is not my thing. It's not worth the effort for me.
In writing this, I seem to be justifying not making corn chowder, or perhaps I seem to be complaining, or people have told people with disabilities that they are so sensitive! What I would like is for someone out there who doesn't "get it," to read this and understand why things are different for people like me. I don't want a sympathy party. I do wish people would understand just a bit, that everything is different for me than for someone without MS.
Briefly, if the person who said I should make corn chowder, if the person could follow me through the day, the person would see the following... Every morning I sit on the edge of my bed wondering if I will be able to stand. Assuming I can stand, I then do a short series of physical therapy exercises. I have coffee, take a shower, etc. It takes me longer to do all of this. I write a good morning note to my daughter, drive 50 minutes to work, work all day, drive an hour home, and figure out what is easiest for dinner. Making dinner takes longer for me and it's between the evil hours of 4 and 7pm. I make sure my daughter has homework done, do more physical therapy exercises, fall asleep in whatever I am doing at 8pm, wake up at about 8:30, and on and on. And it hard to explain this without someone watching, but things take me longer than someone without MS. At 10pm I do more physical therapy exercises and then go to bed. At least once during the night I get up to walk because I get severe leg spasms. My body only lets me sleep about 6 hours before the severe leg spasms have me sitting on the edge of our bed wondering if I will be able to get up... if my legs work. And this is an average day. During the day while at work I get up every hour to walk. Many people think I do this to stretch. I walk during the day to work on walking. Today I walked a lot more because my legs wanted to have spasms. Walking is the only thing that really helps spasms. I can be very tired, but my legs may spasm, and I have to walk. MS can be like that. MS can simultaneously tell a person they are tired, and that they need to get up and walk.
I write all of this so someone out there who doesn't understand, may understand. Even if I look great, I may be really tired.
And I write these entries in a way to "educate" people. You don't see everything. You may see a person using a wheelchair and assume they don't get fatigued because they have a wheelchair. And for many people who use wheelchairs, they may not have fatigue. But everyone who uses a wheelchair is different, so some people may be more tired than others. I may look better in my wheelchair, but I have more energy when using my walker, even though it doesn't look that way.
And no matter what, maybe someone else can make me some homemade corn chowder. I don't think I ever will, at least not for a long time. Right now I'm tired and my body is telling me to walk and then take the 8pm nap, because I won't have a choice.
Peace.
Sunday, February 16, 2014
21 years
February 11 has come and gone, but I did go through that day thinking of how it was the day I was diagnosed with MS, after 3 years of tests, and really, 3 years of me wondering if my mind was playing tricks on me. Maybe nothing was really wrong. But when I found out, someone said to me, "isn't it good, in a way, to know what is wrong?" Yes. I wasn't making things up.
Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids. Then I would get better, but I would never reach the point from before the relapse. I was one of the very first people on Betaseron. Then it didn't seem to be working, so I was one of the first people on Copaxone. It helped slow down MS in some ways. 5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that. Looking back, stopping that really caused MS attacks to increase in frequency. Sometimes I would get them every three months. So then I tried Avonex and Rebif for "fun." Each are shots I got to give myself and were accompanied by other not so fun symptoms...
But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.
And then came Ampyra, right when I thought nothing else would help. And it's not supposed to help. But it has. The every 4-6 month attacks have been gone for 3.5 years. I am walking, much more than ever. It's not supposed to work this well. But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.
What is hard these days is that in my environment, people don't know where I've been. My walking doesn't look like a real walk, but it keeps getting better. People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point. People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.
I guess the point of this post is to summarize where I have been... Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way. If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.
Smile. Life is good. Push the boundaries. Break all the rules. Never give up. Ever.
Thanks be to God.
Peace.
Then the years passed, each one, for about 17 years, filled with times when MS would flare, walking would become more difficult, and I would go on steroids. Then I would get better, but I would never reach the point from before the relapse. I was one of the very first people on Betaseron. Then it didn't seem to be working, so I was one of the first people on Copaxone. It helped slow down MS in some ways. 5 years after being on it I had an allergic reaction, couldn't breathe, sat for hours shaking, and decided to stop that. Looking back, stopping that really caused MS attacks to increase in frequency. Sometimes I would get them every three months. So then I tried Avonex and Rebif for "fun." Each are shots I got to give myself and were accompanied by other not so fun symptoms...
But then came my daughter, so the drug "experimentation" finally stopped, and I decided that besides Copaxone, nothing worked.
And then came Ampyra, right when I thought nothing else would help. And it's not supposed to help. But it has. The every 4-6 month attacks have been gone for 3.5 years. I am walking, much more than ever. It's not supposed to work this well. But there are miracles that make no sense and so the best thing to do is just go with them and thank God for being with me through all the bad, good, and uncertain times.
What is hard these days is that in my environment, people don't know where I've been. My walking doesn't look like a real walk, but it keeps getting better. People who have not known me or have not seen me for a long time just do not know this, and so I can get comments from people assuming I am always getting worse, or people assume I get up to walk just to stretch, just because...Sometimes I want to scream to tell people of my long journey, because especially lately, in new environments, the "baseline" of Beth is where I am today; not 4 years ago, which was a very low point. People can seem to assume that I am just walking to walk, so they try to have a conversation with me. One person thinks I am stretching and taking a break, and has tried to make their own break include using a yo yo, and doing that while I am walking.
I guess the point of this post is to summarize where I have been... Very low points, coupled with getting gradually better, and learning to walk again, as high points, and some of the reactions of people along the way. If you see someone who looks like walking is very difficult, well, it may be that the person is actually happy to walk, and it could be that the strained walking is an improvement.
Smile. Life is good. Push the boundaries. Break all the rules. Never give up. Ever.
Thanks be to God.
Peace.
Saturday, January 25, 2014
A shift
As an aside to this post, someone (one of those people who thinks they know everything) told me how they would never put anything personal about their life on the Internet, and thought no one else should either. They don't know about my blog. I suppose I put my life out here because I made the conscious decision to do so. Many people wouldn't do this, but I think you never know who might find something about my life useful in some way to them, or somehow interesting, or something else. And so I write about my life, in the open. Not everything is here, and people have told me they follow me through my blog. People should know that this is actually a small part of my life, the parts I want to share. Many of the hardest parts of my life, and some of the best parts, are not here, and it's not a political blog either. Enough said. Onward with the blog!
Go back a few months ago. I went to see my neurologist specifically because of migraines. I always felt that MS took front and center at my appointments and that migraines were an afterthought, whereas they needed to be better addressed. I get migraines in waves. If you've had a migraine you know they are horrible and incapacitating; if you haven't had one, just hope it stays that way. When I get a migraine, I try to plow through it until my body tells me it's time to sleep. I don't usually just get one migraine. I get a whole series of them over about 5 days. When I went to see him, I kept having repeated series of migraines. So I got a new medicine to add to the old one with the thought that one is longer lasting, so take the shorter-acting one with the long-acting one and eliminate the 5 day recurring migraine. Excellent!
I picked up the medication and read the warnings. That might not have been the best plan. Then I decided this new medicine might cause me to have a heart attack or something worse so I didn't take it. Really I should have called the doctor to ask. Warning labels always say stuff like that.
Over the last few months I've been relatively migraine-free and didn't need the new medicine. Excellent!
This past week I went for a follow-up with my neurologist, ready to talk all about MS, how I was improving, ..., focusing on MS.
Instead, the appointment began with a big migraine discussion! He convinced me that the new medicine was safe and said I could call should I have questions (ie if I think something is going to kill me, it's pretty easy to pick up the phone and he doesn't mind). Then he likes to check out the ulnar neuropathy I have which is caused by pushing on the handles of my walker. He thinks surgery would be fantastic; I don't; life goes on. At the end, we talked about MS, but not much. I told him about making it around the track on Christmas in under 15 minutes, something that took me over an hour a couple years ago... thank you, Ampyra. And he said yes, I am getting stronger. He thinks I look so much better than when I first saw him in June. I'll take his word for it. He must be mystified that Ampyra has done all of this, and perhaps mystified that I'm not interested in some other medicines.
So to wrap up this rambling blog, I think it's unique, and really neat, that someone realized that medical priorities may shift. I'm getting stronger physically, so I am stable. What wasn't stable was my migraines. So those moved to the front of the priority list. No other doctor has ever shifted priorities like this, so I am thankful someone finally did, because in reality, migraines can be a whole lot worse than MS.
Peace.
Go back a few months ago. I went to see my neurologist specifically because of migraines. I always felt that MS took front and center at my appointments and that migraines were an afterthought, whereas they needed to be better addressed. I get migraines in waves. If you've had a migraine you know they are horrible and incapacitating; if you haven't had one, just hope it stays that way. When I get a migraine, I try to plow through it until my body tells me it's time to sleep. I don't usually just get one migraine. I get a whole series of them over about 5 days. When I went to see him, I kept having repeated series of migraines. So I got a new medicine to add to the old one with the thought that one is longer lasting, so take the shorter-acting one with the long-acting one and eliminate the 5 day recurring migraine. Excellent!
I picked up the medication and read the warnings. That might not have been the best plan. Then I decided this new medicine might cause me to have a heart attack or something worse so I didn't take it. Really I should have called the doctor to ask. Warning labels always say stuff like that.
Over the last few months I've been relatively migraine-free and didn't need the new medicine. Excellent!
This past week I went for a follow-up with my neurologist, ready to talk all about MS, how I was improving, ..., focusing on MS.
Instead, the appointment began with a big migraine discussion! He convinced me that the new medicine was safe and said I could call should I have questions (ie if I think something is going to kill me, it's pretty easy to pick up the phone and he doesn't mind). Then he likes to check out the ulnar neuropathy I have which is caused by pushing on the handles of my walker. He thinks surgery would be fantastic; I don't; life goes on. At the end, we talked about MS, but not much. I told him about making it around the track on Christmas in under 15 minutes, something that took me over an hour a couple years ago... thank you, Ampyra. And he said yes, I am getting stronger. He thinks I look so much better than when I first saw him in June. I'll take his word for it. He must be mystified that Ampyra has done all of this, and perhaps mystified that I'm not interested in some other medicines.
So to wrap up this rambling blog, I think it's unique, and really neat, that someone realized that medical priorities may shift. I'm getting stronger physically, so I am stable. What wasn't stable was my migraines. So those moved to the front of the priority list. No other doctor has ever shifted priorities like this, so I am thankful someone finally did, because in reality, migraines can be a whole lot worse than MS.
Peace.
Saturday, January 18, 2014
Stuck
"None of us want to be here."
Those words were said 2 days prior to the situation in which I found myself, and though totally unrelated, the statement held true.
It was our first skiing trip of the season. These days, we can't drive to the mountains, ski, and then drive home all in one day. Since I sit-ski, it's too much sitting - all day - and my legs don't like it. So this time we left early Sat, skied on Sat, stayed overnight, and then came home on Sunday.
I used to have a 4 wheel drive vehicle, but for reasons of lifting things into the car, I had to get a mini-van. Mini-vans are very exciting to some people. I like my mini-van, but they are just not for me - big, and most importantly for commuting to ski, they are 2 wheel drive.
Driving up to the mountains that Sat , we encountered a lot of traffic, but it's either choose traffic Sat morning or traffic Sun afternoon and Sun afternoon seems worse. Unfortunately, there was snow and ice on the road, as well as traffic, on Sat, so it took us over 3 hours to get to skiing. I told my daughter, "Well, at least the way home can't be as long as that!" I jinxed myself.
After skiing, we spent the night where we always do - nothing is cheap, but where we stay is on the cheaper side of things. More importantly, the people who work there are always helpful, not because they have to, but because they want to help. And I like that. They also remember me every time, because somehow 2 years ago, when using the bathroom sink, it became dislodged from the wall and ended up on the floor. People ask how I didn't get hurt and I don't know. I suppose I was somewhat lucky.
A snowstorm was predicted to go through that night and I thought perfect - then we should be fine to drive home. So we ordered pizza and watched the Olympic ice-skating championships, while my daughter tried to get me engaged in playing Minecraft with her, while I tried to stay awake.
The next morning, I thought the cat was poking me until I realized it was my daughter, informing me that I had slept in! It was 7:20. That is actually sleeping in for me. Usually my leg spasms have me up by 5:30 or 6.
"Is it snowing?" I asked. "No," she replied. Hmmm... 10 minutes later, she informed me that it was snowing. 10 minutes after that I realized the storm had come late. It was just starting to snow and the wind was blowing so it was hard to see anything outside. This was not good news.
Maybe the storm would blow through quickly, by 11, when we planned to leave. Then the roads would be ok and we would miss the Sunday afternoon traffic. In reality, we should have left then. By 11 there were no good options. The storm was still there and visibility was bad. If we waited we would be with the traffic and in the middle of the storm. So we left.
Looking back, perhaps staying an extra night would have been a better plan! Looking back, there were no trucks on the road which indicates bad weather. And as I looked around me I was surrounded my 4-wheel drive vehicles.
Without weather, it's not a long journey from where we were up to the main tunnel that is the top point at which cars then head down to Denver. We drove slowly. I showed Lori how going slowly was working, how the other car next to us kept getting stuck because they were pushing hard on the accelerator pedal and tires were just spinning. 2.5 hours later, going at most 5 miles per hour, we were 2.5 miles from the tunnel, although we didn't know this because we couldn't see much.
All of a sudden, the 3-lane road became 1 lane and a slip and slide, make your own way, combo of 2 lanes. We were in the slip and slide area. After 2.5 successful slow-moving hours, we were stuck. Nothing worked; the only people getting through appeared to be the 4-wheel drive vehicles; there were lights on the left side of the road and lights and state patrol vehicles on the right side (where we were). And we were stopped. "None of us want to be here." That's what I thought right then.
A patrol car pulled next to us and informed me that there were 2.5 more miles to go and things would only get steeper. "If I were you," he said, "I'd take a tow to the tunnel."
Even though we didn't want to be where we were, we were actually very lucky to just be there right when the patrol car was there, right around all the vehicles that could get us out of this mess. I no longer needed to be afraid. The patrol car blocked me; another department of transportation vehicle came and pushed me to the side of the road, and the tow truck hooked us to it and took us to the top. What an experience to be in the van while being hooked up and towed. It was like being tilted as if going up a roller coaster, to get set, and then put back down and towed, sternly instructed not to touch anything.
We made it home! Going down from the tunnel there was still ice and snow for awhile. But then there was nothing - dry roads. Instead of 3 hours, it took us 5.5 hours to get home. But we made it!
The skiing? Well, the skiing was awesome. It was a sunny day and the snow was a somewhat sticky, powdery mix, which was slow, but good for the first day of skiing. I have trouble going left, and we found something to help correct that. As I sat in the ski office during lunch, the ski program director noted that I always sit leaning left. I had no idea! I wish people would tell me these things that then interfere with skiing. The ski instructor came up with a plan to put a small pad underneath my right side and voila! The left turn was corrected. The only problem is that now the right turn is a bit off. But I can work through that.
So, beginning the ski season was interesting. Every season seems so very different. This one I will never forget because we got home safely, because we just happened to be in the right place at the right time to get help, and for that, I am thankful for all the people who work out in these storms, in miserable conditions, to try to keep our roads safe.
Peace.
Those words were said 2 days prior to the situation in which I found myself, and though totally unrelated, the statement held true.
It was our first skiing trip of the season. These days, we can't drive to the mountains, ski, and then drive home all in one day. Since I sit-ski, it's too much sitting - all day - and my legs don't like it. So this time we left early Sat, skied on Sat, stayed overnight, and then came home on Sunday.
I used to have a 4 wheel drive vehicle, but for reasons of lifting things into the car, I had to get a mini-van. Mini-vans are very exciting to some people. I like my mini-van, but they are just not for me - big, and most importantly for commuting to ski, they are 2 wheel drive.
Driving up to the mountains that Sat , we encountered a lot of traffic, but it's either choose traffic Sat morning or traffic Sun afternoon and Sun afternoon seems worse. Unfortunately, there was snow and ice on the road, as well as traffic, on Sat, so it took us over 3 hours to get to skiing. I told my daughter, "Well, at least the way home can't be as long as that!" I jinxed myself.
After skiing, we spent the night where we always do - nothing is cheap, but where we stay is on the cheaper side of things. More importantly, the people who work there are always helpful, not because they have to, but because they want to help. And I like that. They also remember me every time, because somehow 2 years ago, when using the bathroom sink, it became dislodged from the wall and ended up on the floor. People ask how I didn't get hurt and I don't know. I suppose I was somewhat lucky.
A snowstorm was predicted to go through that night and I thought perfect - then we should be fine to drive home. So we ordered pizza and watched the Olympic ice-skating championships, while my daughter tried to get me engaged in playing Minecraft with her, while I tried to stay awake.
The next morning, I thought the cat was poking me until I realized it was my daughter, informing me that I had slept in! It was 7:20. That is actually sleeping in for me. Usually my leg spasms have me up by 5:30 or 6.
"Is it snowing?" I asked. "No," she replied. Hmmm... 10 minutes later, she informed me that it was snowing. 10 minutes after that I realized the storm had come late. It was just starting to snow and the wind was blowing so it was hard to see anything outside. This was not good news.
Maybe the storm would blow through quickly, by 11, when we planned to leave. Then the roads would be ok and we would miss the Sunday afternoon traffic. In reality, we should have left then. By 11 there were no good options. The storm was still there and visibility was bad. If we waited we would be with the traffic and in the middle of the storm. So we left.
Looking back, perhaps staying an extra night would have been a better plan! Looking back, there were no trucks on the road which indicates bad weather. And as I looked around me I was surrounded my 4-wheel drive vehicles.
Without weather, it's not a long journey from where we were up to the main tunnel that is the top point at which cars then head down to Denver. We drove slowly. I showed Lori how going slowly was working, how the other car next to us kept getting stuck because they were pushing hard on the accelerator pedal and tires were just spinning. 2.5 hours later, going at most 5 miles per hour, we were 2.5 miles from the tunnel, although we didn't know this because we couldn't see much.
All of a sudden, the 3-lane road became 1 lane and a slip and slide, make your own way, combo of 2 lanes. We were in the slip and slide area. After 2.5 successful slow-moving hours, we were stuck. Nothing worked; the only people getting through appeared to be the 4-wheel drive vehicles; there were lights on the left side of the road and lights and state patrol vehicles on the right side (where we were). And we were stopped. "None of us want to be here." That's what I thought right then.
A patrol car pulled next to us and informed me that there were 2.5 more miles to go and things would only get steeper. "If I were you," he said, "I'd take a tow to the tunnel."
Even though we didn't want to be where we were, we were actually very lucky to just be there right when the patrol car was there, right around all the vehicles that could get us out of this mess. I no longer needed to be afraid. The patrol car blocked me; another department of transportation vehicle came and pushed me to the side of the road, and the tow truck hooked us to it and took us to the top. What an experience to be in the van while being hooked up and towed. It was like being tilted as if going up a roller coaster, to get set, and then put back down and towed, sternly instructed not to touch anything.
We made it home! Going down from the tunnel there was still ice and snow for awhile. But then there was nothing - dry roads. Instead of 3 hours, it took us 5.5 hours to get home. But we made it!
The skiing? Well, the skiing was awesome. It was a sunny day and the snow was a somewhat sticky, powdery mix, which was slow, but good for the first day of skiing. I have trouble going left, and we found something to help correct that. As I sat in the ski office during lunch, the ski program director noted that I always sit leaning left. I had no idea! I wish people would tell me these things that then interfere with skiing. The ski instructor came up with a plan to put a small pad underneath my right side and voila! The left turn was corrected. The only problem is that now the right turn is a bit off. But I can work through that.
So, beginning the ski season was interesting. Every season seems so very different. This one I will never forget because we got home safely, because we just happened to be in the right place at the right time to get help, and for that, I am thankful for all the people who work out in these storms, in miserable conditions, to try to keep our roads safe.
Peace.
Friday, January 3, 2014
Family
It's the time of year that we spend (spent) with our families - we meaning not me, but people in general. Some families have "interesting" dynamics which might make spending time with them something that is really fun... or not. We, as Christians, or other religions, are also children of God and part of the family of God (there is better wording for this, but hopefully anyone who reads this gets the idea). Thinking of both of these concepts of family (family as people related to us / extensions of that, and the family of God), I was thinking recently of my godparents, 4 of them, some still on earth, others who have moved beyond life on earth.
Many times I think babies are baptized, people are named as godparents, and life goes on. I think I thought that until recently. Godparents recite specific responsibilities, in words, on the day of a baptism. Everyone is happy (except sometimes the babies!). Everyone goes home. Yay. Done. Check that off the to do list. But many godparents go beyond that, and the roles they play, when they choose to do so, can be much larger than specific recited words. When I think of my life, my godparents, though not directly involved in my faith for the most part, were (and are) a big part of my life.
I have 2 sets of godparents. One set knew my mom through her university (initially) while the other knew my dad through his university (initially), or that's what I know, and it may be a bit different. The set, or couple, through my mom, remembered to send me, every year for my birthday, a charm to add to a charm bracelet they had given me. I couldn't wait to see what the next charm would be. Their daughter was also named Beth, and to this day we debate which one of us is Beth #1 versus Beth #2 (She's Beth #1 because she is older, but she claims we are equal. I'm fine with #2 and think we can still be equal).
The other couple had/has 2 kids (now adults), close in age to the 3 of us in my family. Our 2 families have always been close. We spent every Thanksgiving and Christmas together growing up. I played soccer and ran track with their daughter. She lives in Germany but we get together when she is here (which is unexpectedly now, but we will get to see each other). Every Thanksgiving and Christmas we would plot a get-away-from-parents strategy. But first, lots of appetizers! Then, dinner... the shorter the better, with lots of food! During dinner we would start to exchange glances - who was going to make the first move? There was a movie and games elsewhere, away from this formal talking of dull grown-ups! One kid would ask to be excused and we would all watch to see if it meant it was time. And soon, we were off! Games, movies, ..., did we have to leave? Well, we knew we would see each other soon. Those were the really great times.
Both couples have always been there for me during the good times and the bad - graduations, MS diagnosis, life with MS, sports, music, and the list goes on. We only went to church together on the Sunday when I was confirmed (I could be wrong about that), but they influenced my life by the examples they set. One continued to send Lori cards in the mail after she (my godmother) had a stroke; she had her stroke as I started Ampyra, so would watch my progress and compare it to hers. In a sense we were on journeys together - improving. But then the journeys diverged and for a bit, I struggled. I knew she would want me to keep going, to keep getting better. But I didn't know the journeys would diverge like that, and so there was a strange point when I felt a feeling of being alone, even while knowing she wouldn't want this. I was stuck. Gradually I moved on and continued my journey, subconsciously recognizing that 2 journeys cannot remain in parallel forever, and knowing she wants the best for me.
Another godparent was there when Lori was born. My main nurse would tell me how it was impossible to keep my mom, my godmother, and my mother-in-law in the official waiting room because they were so excited. On the day Lori was born, 2.5 weeks early, this godmother who came to the hospital was really supposed to be coming with my mom, to my house, to set up the baby room. Plans change when babies come! She smiled and was so happy for us all, and I was so happy she could be there. As an adult I think I saw her more than as a child. She visited me when I lived in Minnesota and was so happy to take the elevator with me, instead of the escalator, because she said she had always hated escalators and didn't feel comfortable using them.
And so family is inclusive of my godparents. They taught me faith sometimes in the traditional way, but more often by just being there, by just being them. What has been very difficult is a certain, sudden "role" switch - instead of being the one to follow, I am leading my life and they are in the background. This realization of role-switching has come at unexpected, and always unwelcome times, feeling like punches in the stomach.
Sometimes we must say goodbye, always before we are ready, for some reason never feeling right, feeling like it wasn't supposed to happen, even though that makes no sense. It is difficult to tell people - oh, it's godparents - for many godparents didn't have such a large role - for many, they weren't family. But for me, they always were and are. I continue, wondering if I can be at all as incredibly wonderful as they have been.
And as this happens, I continue to search for what I think they wanted for me...
peace.
Many times I think babies are baptized, people are named as godparents, and life goes on. I think I thought that until recently. Godparents recite specific responsibilities, in words, on the day of a baptism. Everyone is happy (except sometimes the babies!). Everyone goes home. Yay. Done. Check that off the to do list. But many godparents go beyond that, and the roles they play, when they choose to do so, can be much larger than specific recited words. When I think of my life, my godparents, though not directly involved in my faith for the most part, were (and are) a big part of my life.
I have 2 sets of godparents. One set knew my mom through her university (initially) while the other knew my dad through his university (initially), or that's what I know, and it may be a bit different. The set, or couple, through my mom, remembered to send me, every year for my birthday, a charm to add to a charm bracelet they had given me. I couldn't wait to see what the next charm would be. Their daughter was also named Beth, and to this day we debate which one of us is Beth #1 versus Beth #2 (She's Beth #1 because she is older, but she claims we are equal. I'm fine with #2 and think we can still be equal).
The other couple had/has 2 kids (now adults), close in age to the 3 of us in my family. Our 2 families have always been close. We spent every Thanksgiving and Christmas together growing up. I played soccer and ran track with their daughter. She lives in Germany but we get together when she is here (which is unexpectedly now, but we will get to see each other). Every Thanksgiving and Christmas we would plot a get-away-from-parents strategy. But first, lots of appetizers! Then, dinner... the shorter the better, with lots of food! During dinner we would start to exchange glances - who was going to make the first move? There was a movie and games elsewhere, away from this formal talking of dull grown-ups! One kid would ask to be excused and we would all watch to see if it meant it was time. And soon, we were off! Games, movies, ..., did we have to leave? Well, we knew we would see each other soon. Those were the really great times.
Both couples have always been there for me during the good times and the bad - graduations, MS diagnosis, life with MS, sports, music, and the list goes on. We only went to church together on the Sunday when I was confirmed (I could be wrong about that), but they influenced my life by the examples they set. One continued to send Lori cards in the mail after she (my godmother) had a stroke; she had her stroke as I started Ampyra, so would watch my progress and compare it to hers. In a sense we were on journeys together - improving. But then the journeys diverged and for a bit, I struggled. I knew she would want me to keep going, to keep getting better. But I didn't know the journeys would diverge like that, and so there was a strange point when I felt a feeling of being alone, even while knowing she wouldn't want this. I was stuck. Gradually I moved on and continued my journey, subconsciously recognizing that 2 journeys cannot remain in parallel forever, and knowing she wants the best for me.
Another godparent was there when Lori was born. My main nurse would tell me how it was impossible to keep my mom, my godmother, and my mother-in-law in the official waiting room because they were so excited. On the day Lori was born, 2.5 weeks early, this godmother who came to the hospital was really supposed to be coming with my mom, to my house, to set up the baby room. Plans change when babies come! She smiled and was so happy for us all, and I was so happy she could be there. As an adult I think I saw her more than as a child. She visited me when I lived in Minnesota and was so happy to take the elevator with me, instead of the escalator, because she said she had always hated escalators and didn't feel comfortable using them.
And so family is inclusive of my godparents. They taught me faith sometimes in the traditional way, but more often by just being there, by just being them. What has been very difficult is a certain, sudden "role" switch - instead of being the one to follow, I am leading my life and they are in the background. This realization of role-switching has come at unexpected, and always unwelcome times, feeling like punches in the stomach.
Sometimes we must say goodbye, always before we are ready, for some reason never feeling right, feeling like it wasn't supposed to happen, even though that makes no sense. It is difficult to tell people - oh, it's godparents - for many godparents didn't have such a large role - for many, they weren't family. But for me, they always were and are. I continue, wondering if I can be at all as incredibly wonderful as they have been.
And as this happens, I continue to search for what I think they wanted for me...
peace.
Subscribe to:
Posts (Atom)