"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.
Sunday, September 7, 2014
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.
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