Leo's Gift

The last posting of the year... Leo is really Robert, but he's Leo on Facebook.

Leo called me on Sunday and after we talked for awhile, he said, "Beth, I'd like to give you my Spinergys." Spinergys are racing tires. Leo let me borrow them when I made the climb up to Vail this past summer, because he was recovering from surgery, and they made the climb easier because they weigh almost nothing. When I went to visit him and pick them up, he also coached me on how to make it up Vail. There's a part coming out of Copper, he said, and you have to get momentum going for it. And the hardest part is right at the top, where the switchbacks are.

You see, the Spinergys are not the gift. Leo, or Robert, is the gift. We met one summer handcycling. He was at a handcycle camp where I/we climbed Montezuma (the picture on this blog) the summer before Vail. He made it up way before me. But he waited at the top with 2 other friends. And I made it! We biked at Leadville together. Then he found one of my Montezuma pictures on Facebook (of us at the top) and we became Facebook friends. At some point we learned we both went to great, small liberal arts colleges, we both majored in math, and at some point did some programming for work.

I saw Leo in the hospital after a back surgery and then during his recovery at home. And then he started handcycling again!

Our last ride together was in the fall, at Bear Creek State Park. Big group ride with a long and short option. I started the long route and had no idea where I was. Leo rode with me. We had our own route--it was kind of like riding with your brother and just talking, not pushing. And he knew I was having shoulder problems and was somehow making sure I didn't push too hard, that I turned around at the right time, and that kind of thing.

So I got this great gift--Leo. I appreciate the tires and will use them. I would rather ride with him than know he can't ride. I hope the tires last. But the better gift is Leo and that friendship. I hope that lasts.

So, a prayer for Leo--that he makes it through the coming challenging months; that the pain he has passes; that the friendship between us continues; and that he finds another time to give me some coaching.

God helping us muddle through it all, and finding true friends for us along our many adventures. I do believe that. To end the year, thanks be to God.

Different and unexpected

It must be between semesters and I'm randomly posting thoughts coming to mind more frequently... This stream of thoughts is hard to clarify. But it's mine in this random blog, so that's how it will be.

Christmas was wonderful--to have family here in a fairly relaxed environment; to see everyone and talk with everyone; to see Lori's excitement at the day. Two years ago I was getting better; a year ago my mom was undergoing chemo; this year brought something unexpected, though it shouldn't have been.

I think once I had MS, I somehow developed an assumption that nothing was going to happen to anyone else because MS had happened to me. That's probably because I was young, knew no one else with a disability, and didn't have parents that I considered old at all. To me, my parents were never going to age.

The last few years has changed my strange assumption that nothing is going to happen to anyone else. One friend of mine has ALS; another friend with a spinal cord injury has complications from that; many other friends with disabilities struggle with different things; and now my godmother has Alzheimers. It makes me think of a training exercise I obnoxiously disputed, where a group of us was given four disabilities and made to choose one we would "prefer" and the one we would least like to have. At the time I thought that was awful, because while it pointed to the bad assumptions people have about different disabilities; more evident was that it made people with those disabilities feel horrible.

Now I have a another thought which was only in the periphery then. We don't get to choose what we or a family member hsa. We may get something and somehow God helps us and our loved ones muddle through it.

I knew my godmother has Alzheimers as I was the first outside their immediate family to ask if something was happening. I had seen some deterioration. But I did not expect to see her this time with it unclear if she knew it was Christmas, who I was, and having difficulty knowing whether to use the spoon or knife. For some reason, this was striking, and brought me back to that "What would you prefer?"

And to that, I now think what I need to point to is that we don't get to choose. What is better is to talk about what each person may need for support, how best families and friends can help, and how those who act as caregivers can receive support.

I see my godmother and know that her husband is perhaps the best support person she can have. But I wonder if he is getting the support he needs, and that also depends on what he wants. I think we all need to talk more about this--we need to get past classifying people and focus on individuals.

With the new year coming, maybe I can turn some of my efforts to this. I know God helps us muddle through it all. But can we help those who "muddle" (I guess this includes me), realize the resources available to them and they don't have to muddle alone? I think God is behind some of this, and can give greater support if people aren't in things alone. It takes a village... a village in constant motion... a village that never really stops or reaches an ending point.

Looking back, looking forward

Maybe I dwell on things a bit too much, but maybe it's ok to do that a bit, to look back, to look forward...

Looking back, I suppose I dwell on the depression phenomena that happened a few years ago, but maybe that's because it was so impactful, it was something that had never happened, it was something I never understood in others, and now I feel I have some tiny bit of understanding. I won't dwell on my mom and her battle with breast cancer, but I will look back on it, briefly. And then I move forward.

Two years ago (is that right?) I was coming back from depression. It hit because of a strange mix of steroids for MS and me thinking I could stop taking another medicine because I was taking steroids. Bad decision! Anyway, the depression hit right around the beginning of Advent and by Christmas, I was getting better. But I was still feeling this strange sense of being fragile. Lori (my daughter) and I went to the Nutcracker with my friend and her daughter. My friend had experienced post-partum depression, so she seemed to understand this strange feeling of being fragile. Yesterday, Lori and I went to the Nutcracker again, without me feeling fragile. We had a wonderful time and I thought back to a few years ago, when going to that show was totally different. I love the Nutcracker. Looking forward, I hope there are many more years of it being this great experience, where Lori and I are both captured by the magical moments brought to us from the stage.

Looking back, a year ago my mom was undergoing chemo and she was feeling a kind of fragile, where she couldn't stand a lot of noise. So she and I had our own little Christmas celebration with no noise, just the 2 of us. Looking forward 2 days, there will be about 10 people at my house, and my mom will be there and not feeling fragile. She's my rock and last year was tough. This year is so special because of her.

Looking back--there were also good times, but there were some really hard times. Looking forward seems better. I have myself back, and I have my mom back. Maybe to get this great sense of moving forward I have to look back. Thanks be to God for looking forward and, of course, for so much more.

Giving

Yesterday was my first day back skiing for the season--season #8. Before I left I was worried because truly things are chaotic at work; life has been busy at home; I have not had time to get ready for Christmas; and I have not had time to experience Advent the way I want to experience it. But off I went.

Amazingly, I left work behind. I only had brief thoughts of work all day. And I wheeled into the ski office that I love, where I feel accepted, where I drop my disability at the door and consider my abilities. As much as I try to give, I really feel like the people up there give, give, and give more, and they love it. Somehow it is rewarding to them. We are "average" people there and find it funny to observe the people who wear designer ski outfits, and come down the hill, out of controlr, yelling, "help me!!!!!!!!" I roll into the ski office and everyone says hello and seems so happy to be there. That is giving. I give, but I wish I could give like that--loving every moment of it.

The day was successful--my best first start. And that was through giving. My ex-track coach, Jean Ann, once said "you could have won that race. You know that, right?" And there I was on the slope, struggling with self-confidence that can plague me. And Jean Ann, who I think of often as she struggles with ALS, came into my mind. I didn't win that race, but I CAN make it down these slopes without panicking. It is possible. As Jean Ann's shirt for raising funds says, "All things are possible." And so I did it--turned things around and found some confidence.

Thanks be to God for all the good people do. It makes the world a better place. Help me to do as much good as I can.

Hope brought back Beth

It has been 2 years since the first Wed Advent service when I realized it was time to ask for help. It was the first time I got help--at church a presence reached out and just held me there. And things weren't getting better--they were worse. I had been on steroids for an MS attack and the mix of that with everything else caused a severe depression.

Thoughts I remember:
- crying all the way to work, all the way home, and any timee I was alone
- hiding this from everyone
- wondering when I would feel like myself again
- calling my brother and asking him when I might get better again
- feeling that each day was so long and wondering how I would get through each and every day.
- starting medicine, going home, sitting in my garage and wondering whether to end everything and then deciding to see if the new meds might start working in a few days
- blankly staring at a lot

Going to church worked, the new medicine worked, I realized that so many people cared so much for me once I told them what was happening. There was hope.

God--seeing me through yet another thing, holding me ... thanks be to God.

And we enter another Advent season where I am myself again, life is not perfect, but I am happy to be me.

What will happen to Lori?

I've been wondering this week what will happen to Lori as she grows up, or what will she think of me? Will she love me? Hate me? A combo?

Now is interesting. She half the time thinks mom's wheelchair, walker, and leg brace are a lot of fun. The other half of time she hates it and tells me she wishes my legs worked, that I am slow, that she doesn't want to help.

In times when she hates it, she uses it to NOT do things. She doesn't want to help, even though the help is regular chores that other kids routinely do--set the table, let the dog out, etc. If mom's legs only worked, then her theory is she wouldn't have to do these things!

And then she finds Larry, my brace. She puts him in my shoe and puts my shoes on her feet. Giggling she walks around the house like this.

Most of all, I love her, even with the bad stuff. My hope is that she remembers me as a mom who would do anything for her, who loved her, and who wanted all the happiness in the world for her--Lori.

God--please give Lori all the happiness possible, and help her to see the beauty in her mom who is different than the other moms.

20 years

Today I returned to my hometown of Ft. Collins to watch the state cross-country running meet. 20 years ago we won that meet for the first time, and this year they won it again (the 6th time).

I remember when we won for different reasons. I remember being so excited that we won and that I had my best time. But mixed with the excitement was this strange feeling of fatigue I had that day that was different from the usual runners fatigue. And then at some point soon after that, I woke up and my legs felt like pins and needles--like they were asleep. I told no one, but those were the first symptoms of MS. They went away within a few weeks and my celebration never stopped during that time.

It's amazing that I ran my best time to date right then. It's amazing I ignored the pins and needles feelings.

It's amazing I still remember what it feels like to run. MS may take away my ability, but I don't think it can ever take away that feeling. And it can never take away that state championship which is priceless.

Where are we being called?

In the most recent newsletter from our church, this was a question posed--where is God calling us? It was somewhat timely as I'm been trying to figure that out. There have been times when I've felt this strong pull from God, strong direction, strong urgency to listen. But for some reason that is not now. I find myself going through normal routines and wonder what has changed and why do I not full that same tug or pull.

Perhaps I'm not listening and life has become so chaotic that it is difficult to find time to slow down, pause, stop, and think. That's true. I used to write more in this blog diary of mine. But now I find myself getting up, rushing to work, working chaotically to get things done, not taking breaks, rushing to get my daughter from school, take her to activities, do homework, help her learn to read or stop writing numbers backward, doing schoolwork, trying to find my exercise time... What happened?!! It seems things have changed and become rushed and when there is time to slow down, I'm out of energy to the point I wonder what is the easiest thing I can make for dinner with some semblance of nutrition in it?

So, I hope things change. I'm not sure how they will. I keep looking for ways. Maybe God will at some point give me a tug and say "PAUSE...BREATHE...THINK..." Because really, for this cycle of busy-ness to end, I think it will take some yank from outside the "norm."

Personal Best

Thought I'd post an article written on me for my college alumni's magazine. Mostly true, except I've actually been skiing for 6+ years. Can also be found on this link (with my picture):

http://bulletin.kenyon.edu/x3138.xml

The last sentence--yes, I really want that Masters degree!

--------------

by Traci Vogel:

Beth Newsom '95 was in high school when she first noticed something strange. A dedicated runner, the slender brunette regularly brought in prizes for her cross-country team. The state meet during her junior year was no different—her team took first place, and Newsom clocked her fastest time. Afterwards, however, she suddenly experienced a disturbing "pins and needles" numbness in her legs.

"It went away, and I never told anyone about it," she says, but looking back, it was probably the first sign of the illness that took several more years to diagnose.

Newsom, who lives in Parker, Colorado, with her husband and six-year-old daughter, has multiple sclerosis. The disorder, in which the body's immune system attacks the central nervous system, is frightening not only because there is no cure, but also because its progression is unpredictable. Living with multiple sclerosis can mean years of relative health, then a sudden and debilitating "attack" leading to severe loss of function.

For an athlete, it's among the worst of diagnoses—and yet, some twenty years after those first symptoms, and now semi-paralyzed from the waist down, Newsom continues to live as an athlete and to challenge herself as one. She works out with arm weights daily, cycles with a group of disabled athletes who use hand-pedaled cycles, and recently skied for the first time, using adapted equipment that allows her to ski while sitting. A photo of Newsom on the slopes appeared in a February 2009 USA Today article about athletes triumphing over their disabilities.

Newsom credits athletics with helping her overcome the limitations imposed by multiple sclerosis, both physically and psychologically. It all started, she says, with her experience on the track team at Kenyon.

Newsom was at the height of her physical abilities when she arrived at Kenyon as a freshman in 1991. She joined the cross-country team under coach Duane Gomez. It was Gomez who showed her video evidence of the marked wobble that had developed in her stride by her sophomore year, sending her on the road to her diagnosis. "[The video] showed me, O.K., it's real, it's not in my head," Newsom says. She began taking trips to the Ohio State University Medical Center for testing.

There, on February 11, 1993, she heard the official news. That day, she had asked her friend and teammate Kelley Wilder '93 to accompany her. "I had read a lot about MS, but at this point I was doing O.K.," she says. "I was starting to run again." When the doctor said the words "multiple sclerosis," she was stunned. "I remember I said, 'So, should I just lay down on the floor and die?'" Newsom and Wilder walked back to her car, and, she says, "We just sat there and cried."

Back at Kenyon, she rallied, in part by remembering a motivational trick that Gomez had taught her. "Coach Gomez had this method: if you're running a race and you're thinking about the whole 5k, it seems like a long distance," she explains. "But if you break it up into little parts, if you think, 'I can make it to that tree; I can make it to the end of the next block,' it doesn't seem so long. In life, I use that a lot."

Newsom looked down the road ahead: she would no longer be able to run competitively, but she could create other goals. She became the assistant track coach. She switched her major to honors math and economics. She auditioned successfully for the Chamber Singers. During her senior year, she finished the Columbus Marathon.

As her disease progressed and mobility became more difficult, the willpower Newsom learned from long-distance track helped her conquer seemingly impossible challenges. For example, she says, "Somebody told me I couldn't or shouldn't have a baby. Well, I didn't think I could ride a bike again, either. So I went ahead and had a kid." Today, along with raising her child and overseeing the renovation of her house, Newsom is pursuing a master's degree in public administration from the School of Public Affairs at the University of Colorado, Denver. She works as a project coordinator for the healthcare organization Kaiser Permanente, and is a network leader for the Colorado Springs Americans with Disabilities Act Center.

Such a busy existence would be a challenge even without mobility issues, but Newsom works around them. She gets around the house by bracing herself against walls—"or scooting on my butt," she says. For short trips, she uses a walker or leg braces. For bigger distances, she uses a wheelchair, although she resisted it for a long time. "Really, though, it's freed me up. I can go to the mall with it," she says.

Sometimes, Newsom dreams that she's running again. She can still remember how it feels, she says. But the competitions she now wins daily—watching her daughter ski beside her, getting one test closer to her graduate degree—are where the real rewards are found.

To Where?

It's now "that time." The exaccerbation happened. I hate that; I hate not being able to control when they're coming or what is going to happen. I hate not knowing how they will resolve after steroids wear off, and of course I hate the emotional roller coaster courtesy of steroids.

So I sat one night in silence at the kitchen table halfway through the course of steroids, waiting to let the dog in, pondering so much of life, where contemplations of things like life are magnified by being on steroids. This attack was upsetting from the start because I felt so out of control of everything, and helpless. On the steroids, I thought about those feelings of helplessness that, in a sense, are there much of the time, not just during attacks. I do get tired after a day of work, regardless of MS, and I often feel helpless in not being able to push myself past the fatigue. And so, I thought, what should I do with all these feelings?

I wrote kind of a letter, or list, to God, on where I could use help figuring things out, and what I wanted to know. This could be done regardless of religion--I just am a religious person. I don't have the list right here, but I know some things on it. The main thing I wanted to know was what was going to happen now, would I be ok, and could I recover. Now, done with the steroids, I think yes, I can recover. I don't know how much. I'm not there yet. I feel better and can walk, though not back to where I was. What will happen now? I will wait and work on walking. I will hope my fingers stop tingling.

Will I be ok? I'm not sure. I hope so. I know God isn't going to make a grand showing to say "Beth! You will be ok!!" But if I have patience to allow healing, some which occurs on its own, some that makes me work at it, then I will be as ok as I can be.

That note--I'll go look at it again tonight--a prayer of sorts. And part of it includes balancing emotions which are still off--happy, very nervous, sad, very angry, etc. They are balancing.

To where? I don't know. Life is a constant adventure where I feel like I'm on a ride down a river.

Taken for granted

I'd say on any "normal" day I think about the things that people take for granted as I watch people get out of cars, walk into buildings, etc. All this becomes more evident when I have an MS exaccerbation.

First, my thoughts can be doesn't anybody notice I'm having trouble (and am I that good at hiding it)? Doesn't anyone care? Doesn't anyone want to help? Of course I am told I need to ask for help and admit that I am bad at that, but what to ask for when is difficult. If I'm in the beginning of one of these attacks, and my husband leaves town, then who can help me when I fall repeatedly on the floor, when I am totally exhausted to the point of not really thinking of reaching out, but instead thinking of how to make it minute by minute, second by second, with a 6 year old daughter.

Going back to the taking things for granted, I sat there, exhausted, Fri evening, waiting for my husband to return from his day with my steroids. I sat there, and through tears, pondered it all. What do I want? I wish people would be grateful for the opportunity to get out of bed in the morning without wondering whether their legs would allow them to do so. I wish people would appreciate that choosing a physical outfit for the day is not a contemplation on whether they have enough energy to set it out the night before, or if they will have the energy in the morning, and whether they will fall in the process of doing so. I wish people would cherish the ability to carry an open coffee container into work while carrying 4 other bags. I wish people appreciated the ability to come home and make dinner without thinking of what they could make that would require the least amount of energy and still somehow be healthy. I wish people would realize how easy it is to get out of their car and walk someplace. I wish people who do not have a disability would not compare their fatigue to mine. I wish there was a way out there to ask for help before I notice that everything is going to hell. By the time I notice, I get on steroids and am almost past the help stage.

So to sum this whole rant, I wish people would notice when I'm struggling, I wish they would somehow think of some way to help, and I really wish people would not take so many simple things for granted.

Maybe, just maybe, there's hope in this quote from John F. Kennedy:
"Each time a person stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance."

Some way, I believe God is in the mix of all of this. Right now, I'm not sure exactly where, but I do know he's there.

Times have changed

It seems there are so many opinions being voiced right now about what people used to do, particularly surrounding going to school. They used to walk a half mile to elementary school, used to walk over a mile to junior high, etc. No bus option. I walked too, in what was considered a safe town and a safe neighborhood. I look back, grimace, think times have changed, and ponder how people do not see the changes.

I used to walk to my elementary school, with a large group of kids. In Douglas County, we now have year-round elementary schools which means the number of kids walking home on any given day has shrunk. Occasionally, I used to walk home alone from athletics in elementary school. Two of those times I saw things I should not have seen at that age. I never told my parents—thus, a girl walking home alone was considered perfectly safe.

I walked to and from junior high school—1.25 miles—sometimes on a bike path, always listening to my walkman. A few years after that, under a bridge along the same bike path, a woman was raped. Thankfully I was driving by then.

I have other stories which delve into my college life and beyond—they clarify how society has changed. I know there is a registered sexual offender within the vicinity of my first grade daughter’s school. I know when she walks to school she takes a bike path often crossed by a coyote. I know the things I saw as an elementary school girl. I know how oblivious I was walking a bike path as a teenager. I know the results could have been different for me, and that many times I was very lucky.

I want my daughter to be able to get safely home, to not see what I saw, to not have to encounter the scary situations that lurk in many places. I walked home in a different time when there wasn’t much busing. I would like to think society would realize the value of busing, that times have changed, and that parents want their kids to get home as safely as possible.

Different worlds, one person

There are so many struggles in life, and one is the struggle of balance: of balancing work, education, health, family, friends, and on and on. Each part of life has its own struggles. Put them together, and it's ... difficult to put together. I'm sure having MS complicates everything.

I have work. I like work and am trying to figure out what to do with my life, which is where education comes in--between the 2 I will try to figure it out. Something draws me to policy--something mixing disability with healthcare. I'm not sure where that combination will lead. So I spend time thinking of that.

Then I spend time in my athletic world, in a world in which athletics brings me together with others with disabilities. There is a sense of belonging there, of somehow understanding--at least I feel more understood. There is the sense that I can do things I would not imagine I could do. Maybe I can't do them perfectly, but I can do them. There is a sense there that disability can in a sense vanish, that I can laugh more than I laugh other places, that I can let things go. And as I make contacts with others with disabilities, those feelings strengthen and almost bring me back to when I didn't have this disability I hate so very much.

And then there is family, the biggest. Mom guilt follows me everywhere. At work I can feel like I am failing as a mom. When I am in my disability world, there are times the mom guilt creeps in. When I study, it is the worst. I love being a mom--it's what I always wanted. I love being a part of our family--family is so important to me.

Forces everywhere pull and tug. MS consumes energy and makes each of these areas even more of a challenge.

I suppose all I can hope is that I can muddle through it all, be the best mom I can be, hope I do something for the world, and hope that it all makes sense at some point. And I can hope someone is leading me through this ever-turning, ever-changing maze.

Memories

My poor diary had to suffer while I "suffered through Administrative Law. But I survived!

On Facebook, I copied and pasted this neat idea where people can post memories. It was fun and interesting to see what people remembered about me...

- pushing me down the church hall, in Bart (my walker).
- many years back, when no one knew why I had trouble walking, and remembering wondering why the doctors didn't talk to each other--that might have led to something
- my passion for education surrounding people with disabilities.
- some things I don't remember, because life has brought me so much, good and bad.
- funny memories from right after high school.
- a recent handcycling memory.
- me visiting someone in the hospital, which was a surprise to the person but such things are important to me.

Memories span a lifetime--the good, the bad, the ugly, and the unknown. Hopefully, more happy memories are to be made. And though I often forget, God is there, supporting me through each and every one of them.

Thanks be to God.

Trying to understand the misunderstood

People seem a bit amazed that the death of Michael Jackson saddened me. He was one who was misunderstood, I think, and I'll never know him, but I can make things up...

- He was such a success, but he was lonely, and as a child, his father had no compassion and pushed him too hard.

- Music meant so much to him. People who knew him said how talking with him could be a bit strange until he started talking about his music. His music was addictive.

- We'll never know if he abused children. I don't believe he did, but since no one knows, we shouldn't judge him for it.

- He was a great father. His kids loved him and will miss him.

- He wanted to see what the average life was like so much that a grocery store opened at night just for him and his family to experience going to the grocery store.

- He had events in his life which caused him chronic pain and people will say he was a drug addict and judge him for that. Have those people experienced chronic pain? There are nights I wake up in so much pain from leg cramps that I must go sit in a chair to calm them down. It's horrible. I can see how someone could become addicted. I think there needs to be more compassion surrounding pain.

So, I thank God for my life, that I don't have addictions to pain killers, and that I was addicted to Michael Jackson's music. May he rest in peace.

Finish it

Today we had a lesson from 2 Corinthians. Of course, though I shouldn't, I tend to apply these things to my personal life. And since I was reading, I was paying more attention. The lesson to me, in part, was about the fact that although I might not be the best at something--if it is something where I have a passion, then that is most important, and so I should finish it. I related it back to my Masters which, if I do finish, will be in Public Affairs.

People ask me when I will be done, thinking I must almost be there. But I'm only halfway there and it seems like such a slow process. I love almost every class I've taken and have learned so much. I don't know exactly how I will use it when I'm done, but I think teaching in some way could make me happy. That must be because my parents are/were both Professors. Now I'm on a tangent.

This takes forever because it took me forever to define this passion. Then I have a family, a full-time job, and the desire to remain athletic. And then there's having MS--probably the biggest slowdown mechanism. But today was somewhat confirming--yes, finish it. I may not be the best or the fastest at getting it done. But with the passion driving it, I should finish.

Thanks be to God for helping me find the passion, and for in some small way, speaking to me today and telling me to finish it.

What do you really, really want?

So much has been happening in life that I haven't had time for this "diary."

This week I listened to a session from a National Quality Conference, video-conferenced from California. The physician who talked discussed having the patient at the center of care (nothing about us without us concept). We then went through an exercise, after which he gave his answers, making us all re-think ours. So here are the questions with my new answers.

What do you want (think healthcare)?
I want to drive my own care if I can, but I want a doctor who listens, is empathic, encouraging, and tolerates my paranoias.

What do you really want (here he started deviating)?
I really want to be able to continue to be an athlete.

What do you really, really want (the dream)?
I want to be able to run again.

Sometimes we never get what we want, but we fumble through life just the same, and to put it in some kind of religious context, God helps us through it all, the good and the bad.

Inclusion at its best

Today was a great day. I kept wondering if I should go to church or rest, so today I went. Threw on a shirt and thought it really doesn't look my best, but oh well! Off we went! And then we were there and everyone said hello. Everyone wanted to help if I wanted to be pushed in my walker. Anf if I didn't, that was respected as well. Then there was the sermon and I don't remember most of it, but I do remember the pastor saying the times when you don't feel your best are the times you should get to church. Then I knew I was in the right place and it felt like home.

This afternoon I went to a graduation party for someone at my church. They opened part of their fence, had me drive up it, onto their lawn, and then wheeled me up and into their house. It was so awesome. And I didn't have to ask--they just knew.

And why is that? When I don't ask, people know--it's certain people. When I do ask (the 1 time--see below), I am told no. I saw a quote from Gandhi recently: "First they ignore you, then they laugh at you, then they fight you, then you win." It's not about winning, but I like the quote. What I like better is not having to be ignored or laughed at, and not having to fight. What I like is what happened today--beautiful people helping because they just do--they care.

Thanks be to God for those people who care.

Helpless

MS is exhausting. It's been an exhausting week. And it has ended with an answer from my daughter's school that they will not help me. No way. Nope. Not going to happen. Never.

When I have an MS attack, or a bad MS day, I am stranded at home. I'm exhausted. I may not be able to walk or even stand. The last thing I should do is attempt to leave the house to pick my daughter up. So I have her take the bus. Then the neighbors can help her get home. But we're in year-round school, so the neighbors are not always home. I requested my daughter be put on the same schedule as the neighbors so there would always be someone there for her. I was told my request doesn't fall under the ADA (but it does) in a letter today. And then I fell apart.

It seems no one cares about our safety. It seems no one even wants to understand this disease. It seems no one realizes the uncertainty MS brings to one's life. It seems no one cares if I am lying on the floor of my garage unable to move, and my daughter is who knows where. And no on wants to help.

Who can help? I've now contacted the Colorado Cross Disability Coalition and the MS Society. I sent an email to the department of education (federal). I put a post on Facebook. I was having so much fun (not really) that I also sent an email to the president and my 2 state senators. And will anyone help? I am very much doubting it.

Can God help? How?

When no one is watching...

When no one is watching the person with MS, a "sequence of unfortunate events" can be devastating, but is anyone watching in the end? Consider the events:

- My daughter, Lori, finally diagnosed with eColi after a fever and tummy ache. I was at the doctor with her and got to hold her through all the tests. I am grateful.

- The project at work. I think I put everything into that--too much. No one was helping, and I did ask for help from multiple places. And in the end, it's not what was wanted, but there was no help. Now there is help from those who wouldn't give it when I asked. It's funny how that works.

- In the midst of that, there were the unfortunate events surrounding me. The above causes stress, and stress is not good for MS. So over the last week, I felt it coming, my legs getting weak, me getting tired but pushing on. Somehow I didn't let things get to the point where I hurt myself, but I could no longer stand up. There was nothing there.

I called my doctor. I think he somehow understands. He doesn't question why this might have happened so soon after the last attack. I think he may see it often--the economy and stress. MS triggers.

And who is watching? I think God is, somehow. I know I need to rest, and I know I need to do some things over the next 2 weeks. I don't see how that will happen. But I hope that God is there leading me. Actually I know God is there. Maybe the question is whether or not I will listen.

Serving

It is interesting to me the common stereotypes people who are not religious have of people who are religious. I've been called "one of those religious people" and wonder what that means. Today I really wondered.

Today our church was a site for a popular health fair, used largely by people without insurance. I volunteered and thought a few other people might do the same. I came to the church and EVERYONE from church was volunteering1 It was better than the turnout on any Sunday! I don't think the pastor appreciated it when I told him my observation. And we didn't wave any religious flags--we just did community service. Our church members do a ton of that without waving any religious flags.

So it got me to thinking more about the "you religious types" comments. Obviously people don't see what we do. Yes, we go to church. We form a community. It's support. It can and does feel like family. And we reach to the community. It seems a part of who we are.

And thanks be to God for that.

Remembrance

It was 10 years ago today and I remember wondering what I should tell the 10 or so little 10 year olds who I coached in soccer. 10 years ago today I wondered if anyone was really safe. 10 years ago today anyone could walk into a school and the door wouldn't be locked. 10 years ago today was Columbine, where innocent lives were lost right here in Colorado and no one was quite sure how or why. And I think everyone was a little scared. I know I was.

I went to soccer practice the next day or 2 later and I remember telling the little girls that if they ever had anything that bothered them, they should let someone know. They should tell someone. They should talk to someone. And they looked at me with silly grins because they were too young to understand that, in a sense, it took some freedom away.

I wonder where those girls are now. I wonder if they think about today. I wonder if they remember their silly soccer coach, or anything she had to tell them.

Alleluiah

He is risen. He is risen indeed. Tomorrow we go back to our normal lives but today we can give thanks. I've done this previously but here's some. I give thanks for...

- My daughter, Lori. She is special and a true miracle for me.
- My family--Dave, my parents, my brothers and their families, and on and on. Such support and strength they show.
- Those who listen...to when I need to share, whether it be happy times or sad times, or frustrating times.
- Those who attempt to understand and do not judge.
- Those who ask me how I am and really mean it, but don't ask all the time. And along with that, those who follow up with me, and those who have given me help.
- Those who, with my last MS attack, understood I needed rest and brought me meals.
- Continuing to explore the possibilities of life and the opportunities that grad school has given to me.
- Being able to be an athlete. Even though it isn't how I dreamed it would be, I still can push myself and be outside.
- Trying to listen and understand others; tryng not to judge.
- Those who give me extra strength by pushing me a bit further than I think I can go, but not too much.

God, Christ, the Holy Spirit. The 3 in one. The grace they grant me with my imperfections. The support they give me and the path they help me to find. Two roads diverge in a wood and I may take the one less traveled. I hope that makes some kind of difference.

Peace.

Lori's "first" communion and these 3 days

Yesterday was Lori's first communion celebration and was so special. Grandparents were there as well as former teachers. I never feel I got to have that milestone. My first communion went with confirmation. Confirmation consisted of reading a really dry book and discussing it with my adult pastor (or watching my brother discuss it and nodding my head like a good little sister). And I suppose part of confirmation included carrying the flag to the front of the church (and hoping I could get it in the right slot) and playing my flute during services. I am so grateful that Lori gets to be a part of a church community, gets regular Sunday school, creates friends at church, feels comfortable at church, etc. I hope that continues. She is so special.

And so we have these 3 days--Maundy Thursday, Good Friday, and the Saturday before Easter. And the idea was to take even more time during these 3 days. I wish I had done a better job for all of Lent. Thursday was chaotic--loud people remodeling our bathroom, me working on crazy deadlines for work, Lori home due to a water main break at school. And the quiet time? Ha! At church...peace. Back home, well no, forget it. Let's not get into in-laws and noise. Today--busy day at work. Did anyone notice it's Good Friday? Quiet time is now--writing this post. Also an awesome moment of quiet was sitting in the car, when the garage light went out--just sitting there with thoughts. So tomorrow I'm going on a bikeride! Out in nature--that's the quiet time--I'm going to the top of a hill, where there's a great view--and I'm going to take it all in. And for me, that is peace. I'll pause there and God will be there in some way. And I will thank God for that pause and peace, after the busy, chaotic week that I really didn't want. Thanks be to God.

Holy Week, and a few minutes each day

Today is Palm Sunday and church was so busy and things seemed so, kind of, hectic. We couldn't process outside because we had snow overnight (April in Colorado!). So we all packed right inside before the service. Then we had a brunch--lots of activity!

In the Bulletin, I noticed at the bottom that we should try to devote a bit of time each day this week in prayer by candlelight. That is an excellent idea in a week where I know work will be very busy, and most people will not realize the significance of this week for some of us--that it is the week when Christ gave his life for us, that we may in a different sense, live.

So I suppose this blog begins the week in which I will try to devote a bit of time by candlelight each night, because this is important to me. I will give thanks to God for what has been given to me and others. I will ask for God's help in my life and in the lives of others, in particular those who know who they are, who struggle some of the same struggles I do with health, who struggle in similar yet different ways in health, who indeed struggle more. God, please help me, but there is more unfairness out there, and please place your help there first, and help me to take the knowledge of other struggles, feel it, and somehow utilize it. And I will ask God to forgive me whatever harm I have done that I haven't meant to do. God, please show me how not to do that, show me how to connect with others who struggle, help us to find our common bonds. And thank you for connecting us within the past week--let that continue.

Peace, peace, peace, let there be peace, in whatever form that may be.

Thanks be to God.

The Cat, part 2

I love my cat most times, especially when she sits on my lap. My cat is most annoying when she tries to get into the garage when I am trying to leave.

I was getting ready to leave recently, to pick up Lori from school. 3 stairs down to the garage floor and hard to explain, but I use the door from the house to the garage--I think it's for balance. And there was the cat, ready to investigate the garage, the garage which never changes.

In the process of her curiosity, down I went, of course yelling at the cat--clearly this must be her fault, or the fault of our bathroom being in the process of being remodeled, or something else completely unrelated. Off came my shoe, so I was a bit stuck. But I learned my arms are strong, and I can pull myself into the car from the garage floor.

Next time I'm feeding the cat before I go. Then if I fall (these are controlled falls--it's like a form of art for me), I'm sure I can find somewhere else to place the blame. Maybe next time I'll blame the dog. :)

Here's to you...

This Thursday and Friday marked the end of my ski season (in a different way--keep reading), where I did improve (and hopefully will improve next year too!) By being up in the mountains, I missed the front range blizzard in Colorado.

A week or 2 ago I got a message from the old sprint coach at my high school, who I also felt gave me some pointers, was a motivator, and is one of the most beautiful people I will ever have the privilege of meeting and having as a motivator when I was in high school. I exchanged the usual how are you when she contacted me, and the surprising answer was she was not so good. While I have MS, she now has been diagnosed with ALS, or Lou Gehrig's disease.

So I have been thinking a lot about her--some anger, sadness, tears, etc. The thing I will never forget about her was what she told me after I finished 2nd in a 2 mile track race, at a big meet where I was really supposed to finish 5th or 6th. I don't remember what anyone else told me after that race, but I remember her taking the time to take me aside and tell me that I could have won that race. And I knew it. I'll never forget that.

This Thur and Fri her words from way back in high school continued to go through my head. I got to a point on the slope that I always somewhat miss and all of a sudden I heard in my head, "Beth, you could have won that race." With that, I sat up, leaned as I should, and nailed that point on the slope, and then never missed it the rest of the 2 days. There were other points too where her words came into play, and it made the 2 days of skiing more meaningful and more memorable.

The other part that came into play was a song by James Hersch, which also made me think of her. Who knows what will happen, but I thank God that she contacted me, that she brought back that memory (and others), and that she is as I remember her, one of the most beautiful people I will ever know.

Here's to you:
"The sun won't cry,
the moon won't care,
these hills are as quiet as a silent prayer.
And so I sing my song to you,
as if that's all that's left that I can do.

Here's to you, Mr. Twinkle in the eye,
Here's to you, Mr. Never let a day go by
without making someone smile, that's just what you'll do,
Here's to you."

Here's to you, Coach. This race I did win! And then I smiled one of my biggest smiles, ever!

My second marathon

My first marathon was briefly after I was diagnosed with MS. I did it--with the help of so many friends.

Yesterday was my second "marathon." It wasn't official--it was a handcycle ride. I thought it would be 15 or so miles. Ha! I showed up and there were 4 guys with spinal cord injuries and big, buff (kidding!) little me. When we were almost at the turn-around point, the guy I was with told me coming back was slightly uphill the whole way. That could be a problem! Surprisingly, I made it though--28 miles! I don't think I've done that on a regular bike! And it was only my second time out this year.

What's a bit complexing is why I can do stuff like this sometimes, and other times am worthless. That would be the MS beast. Of course, I'm still tired today but being outside did relieve the stress, took way the headaches from the past week, and let me be with others who are more like me. I love that--being with others who are like me in some way--it takes away the disability and focuses on us all out there, at different levels, enjoying the ride (until we hit the wall). And then we all made it-so gratifying.

God here, there, and everywhere--through the good and the bad.

Being the Christ

Lenten Wednesday night at church again this week. This week the sermon was given by someone from another church--we combine our services for a terrific turnout!

This sermon was on how we can take Christ into the world. You can take this message even if you are not religious. The example involved asking someone if they needed help, even if you don't think you can help. But besides that, the message was not to tell people they need help, but to ask.

I thought of this in my own life, but went beyond where I thought I would go. I could easily have gone the route of...people should ask me if I need help rather than just doing something like grabbing my wheelchair. But I was thinking of how I tell people that they need to know about disability, about the ADA, etc. In a sense, that is true--education is needed. In another sense I think taking a different approach may help--asking if they want help, asking if people want education. That is perhaps a better way to take my thoughts to the world.

These services are so neat. I had a migraine all day--I actually had to take 2 migraine pills for it to go away. But after it was starting to ease, we had Evening Prayer, which has a lot of singing. The service is so calming and I usually (depending on the behavior of my 6 year old), leave feeling so much more at peace. With all the stress in my life and the lives of others right now, thanks be to God for providing both that sense of peace, and the message of how best to bring Christ into the world.

MS, Medicine, and Faith

Some who read this blog may think I rely too heavily on religion and don't utilize other things out there. This posting will quickly move down on the list, but I thought I'd post things I do medically for my MS. Religion will always be a big part of my life, but I'm analytical so I keep up with all research, have been on numerous therapies, and continue to utilize mainstream medicine, alternative medicine, athletics, and of course, religion. Note I've had MS for almost 20 years, over half my life.

The mainstream "therapies":
First the interferons. I was one of the first on Betaseron. It initially worked but then stopped working (3 years?) and it was thought I developed immunities, so the other interferons wouldn't work. That was close to when I was diagnosed. I have tried Avonex and Rebif. They, as predicted, didn't help. I was on Copaxone for 5 years. That was awesome! But after 5 years I started having trouble breathing after the injections, and then I would shake for hours. It was more than what the literature describes, so I stopped taking that. I considered taking Tysabri, but was hesitant about the risks involved. Then I had multiple MRIs showing MS is not in my brain but in 1 spot of my spinal cord. So I'm not willing to risk Tysabri if my brain is fine and I now have a 6 year old daughter who means the world to me.

Other therapies:
Over the years, I have tried various things. I've found this combo of Baclofen, Valium, and Provigil kind of works. I have bad leg cramps. Acupuncture has helped with those during the day, but not as much at night. But I truly believe in acupuncture. Also, breastfeeding--while doing that my MS improved a bit, and a recent study confirmed this is probably the case. Another therapy is exercising. I lift a ton of sets of 5 lb weights with my arms, and do balancing and stomach strengthening exercises--the routine takes at least 45 minutes.

And through all of this, religion helps. It is not "an addition" to the other things I do. It is a part of who I am and would follow me even if I didn't have MS. So I contantly will think how God helps me to get through MS, or any given situation, because I have faith. I will continue to follow all the medical research on MS, and I will continue to follow my religious beliefs. For me, it's all important. So regardless of anything MS,

Thanks be to God.

A Day in the Life...

For just someone without a disability, today might have been an adventure. Add disability, and this is how it went.

I woke up a bit late because my legs finally stopped jumping which allowed me to sleep (too late). Even though I was late, I wanted to just lie in bed because my legs were at peace and not painfully jumping. But I got up, showered (no falling) and got to work.

An hour after getting to work, I had to go to a meeting in another building (load up the wheelchair, unload the wheelchair = lots of energy). As I went down the ramp, not sure what happened exactly, but my left foot came off the foot rest, caught the sidewalk, and flip! I was on the ground, looking back at my wheelchair. I was really fine (would have been an award-winning home video though!). The security guard came running out and I got back in my wheelchair (so I could then get out of it 2 feet later to put it in my car!).

I got to the meeting--a management one--lots of fun talk about the economy, changes in the company structure, possible layoffs, keeping employees engaged. Not so much fun.

After the meeting I went to pick up a video from someone, and the someone told me how emails I send her can be personally hurtful, that I seem angry in writing them, etc. OK--before that in the day I had been told how positive I am so I'm a bit confused. Time to leave--now it's 1:15 and no lunch.

Back to the other office--unload the wheelchair, get quickly in--have about an hour to finish things, so no time for lunch (and I have no food). This gaining weight idea of my doctor seems impossible. At 2:30, after the eternal search for missing keys, I head out for more loading and unloading of the wheelchair...this is getting old. I wonder if people realize how much energy this expends.

Now I'm off to choose the showerhead and faucet for our bathroom which is being redone. After getting lost (likely to happen with no lunch and a headache developing), I got to the showroom, unload the wheelchair, and then discover I should have parked in the back of the building--that's where the ramp is. So a salesperson suggested I just load up the wheelchair and re-locate. I was done loading the wheelchair! They moved my car and I went around the building with the sales person. I chose the shower stuff.

Here I go again. Now it's' 4:15, still no lunch, and I am loading my wheelchair to pick up my daughter from school. I did pick up lunch on the way, after finding my way around a traffic jam. Luckily, she was in a good mood, and we went home and played the game Life. Life. This is life.

Not sure what to think of this day other than that I made it. Somehow I didn't faint from not eating, but I was feeling a bit spacy. Somehow my wheelchair launch was ok. And I'm left wondering if people know, in their busy days that must also be exhausting, how exhausting the addition of a wheelchair can be? And oh yes, MS does cause fatigue. Definitely. On days like this, I feel like buying myself a trophy for making it through the thing.

God is there somewhere. Maybe God got me through today.

Finding peace in this economy

These are interesting times to say the least, with the economy. Where I work, there have been no layoffs but healthcare probably lags behind, waiting for people to drop insurance. But it is quiet at work--heads down, no talking. In my role, I'm a bit alone (kind of my own team), so the silence makes it worse. It's a real downer.

So I found myself at church, with my daughter, for the Wednesday Lenten service. During that service, I did feel a sense of peace, a sense of being connected, and I wanted to stay there afterward, and feel a sense of quiet calm. Yet everyone was hapy and talking, so we went home.

So with the silence and also stress at work (various projects, pressure from the President level), I wish I could take the time to just sit and perhaps do contemplative prayer, because I know the stress does not help my MS at all. I hope others with MS are able to do the same--not let the stress get to them.

Please God, lead me to peace and calm, and quiet the MS (lots of leg spasms at night lately). Amen.

"Healing"

Last night was one of the Lenten Wednesday nights at our church. This time we had a service of healing, which I have to admit, seems like an odd concept. In my mind, way before talking with my pastor, I had images of someone in the middle of this circle, and everyone putting their hands on the person’s head and saying a prayer, akin to the hand-waving that occurs in some churches. Nothing like feeling uncomfortable! So I had lunch with my pastor and no, my image of course wasn’t correct.

It was a usual service, but the healing part (besides the hymns and the lessons), was only if you wanted to come up as an individual/couple/family. Then you could go up to the altar and the pastor would lay his hands on your head. At that point, only if you wanted, you could say something. And then there was a cross made on your forehead and a short prayer. So Lori and I did go up, but I didn’t say anything and neither did she. And we got the prayer and the symbolic cross.

The concept isn’t so much that this will promote healing of something specific—ie I should be walking normally today (of course I’m not), but more that it’s not about me/us. It’s about turning things to God and God helping to make us whole, in whatever context that may be. So, I don’t expect a cure for MS or that Lori’s cold will be 100% better today (her wish). But I do hope that maybe life will settle—stress will die down, I will be more patient and at peace, and I will be happy. For Lori I hope her little life is as joyful as possible. She deserves that.

Safety, Disability, Kids (again)

First there was the potential of someone randomly trying to assault youth near where my church is located. And then...

Yesterday I went to the jewelry store to pick up earrings and get a new chain for my necklace. I wheeled up to the counter with my 6 year old daughter and some guy was there with a receipt. He was upset--yelling profanities, pounding the counter hard. They asked him to leave. More profanities--"I don't have $3000!!!" I'm not sure what the issue was. I was hoping he didn't have a gun because he seemed either ready to hit someone or ready to pull a gun. They asked him to leave 2 more times. I took my earrings and went to the other room.

He left (not sure when) without firing a gun. So I asked the sales people if they were worried about something like that. They said they were ready to call the police and that the police are really fast to get there (since they're a jewelry store). All I could think was that, no matter how fast police are, it does not take long to fire a gun and there were 5 of us right there. Maybe I'm over-reacting, but I have never felt so vulnerable.

I had someone accompany me to my car and the guy was still in the parking lot. Good to be accompanied when the wheelchair spots were in an unlit area and off by themselves, and then there was me in the wheelchair and my miracle daughter.

I'm not sure what to think of all this. It's a scary world. These aren't good economic times. And that can lead to scary situations.

Contemplative Prayer

Lent is here and our pastor suggested we pray more. A good idea. I'm finding the time to do so. It's a contemplative thing.

In the Ash Wednesday service, the Gospel lesson was on going into a closet and praying alone. I found that, in a sense, comforting, because I almost always pray alone. On Sunday I had gone to my car after 2 hours of reading at Starbucks. I found a parking space in the middle of nowhere. I stopped the car there, and there is where I prayed, alone.

I suppose these are more like conversations with God. I know I have done something, or I don't like the way I've treated someone, and I'm not sure that will change. I always ask God to help me let go of things--all the things that bother me, all the stresses. I ask for a sense of peace. Sunday, after my "conversation" with God, I went home and found my skiing photo was going to be in the USA Today the next day. That helped me let things go! I let things go until the next day when a problem started at work where someone will not leave me alone. So I've spent the week in this new arena, asking God to help me let that go.

May this Lent be a time when I can truly make the time to ask for these things, so that maybe, in my life, I will learn to let go and will find true peace.

Lori's birthday--the impossible becomes a miracle

It's coming--tomorrow is my daughter, Lori's, 6th birthday. That amazes me now. I always wanted to have a little girl; in fact, I don't ever remember a time in my entire life when I didn't want a daughter. And then came the MS beast, and I thought it was impossible. Then my neurologist decided it wasn't a good plan. Then I went through my Ob doc, who thought it was possible, but let's check with the neurologists. Can you sense that I don't like neurologists?!! Again, the neurologist thought no, but I thought yes. So I went with that. 8 months later, right around the time my grandma left the earth, I became pregnant.

There were so many fears. I didn't even tell my neurologist until I was through 20 of the 40 weeks of being pregnant, and I never saw her again. I went to my rehab doc instead, scared, and told him. I thought he would flip. But instead, he did his usual thing. He kicked his chair back, looked pensive, took his glasses from his mouth and held them with his hand. Then he paused, looked me straight in the eyes, and said "Congratulations." And he meant it; with that, I knew this was possible.

One doc thought I would need a C-section. I knew I wouldn't. I knew Lori would be born early--I just felt it. 2 and a half weeks early, 3 days before my grandma would have turned 100, Lori entered the world. Nothing fancy about it--everything went smoothly. I breastfed--my MS improved while I did that. And there was the miracle of Lori Evelyn. I would sit with her and just hold her, and watch her sleep. And now we still cuddle. Not everything in life is possible; not everyone is given such gifts. But I thank God for the gift of Lori--so special, beautiful, wonderful.

Thanks be to God (and hello to angel Grandma in heaven)

A prayer for inward peace

Who writes prayers or thoughts to God in a blog? Well, here goes--someday maybe I'll look back at this entry. I have times when I "pray"--maybe it's somehow meditative prayer--to try to put everything together, or to ask God to help me do so. Here goes a summary version...

Dear God,

So much goes on in my life. Things weave in and out. Love and anger collide. Hope and frustration collide. The ability to try to understand and support others who do not reciprocate is incomprehensible. I am told I need to believe in myself. I am also told, and I know, that I am not in charge. God--you are in charge, and you offer support. How do I get from your support to releasing the negative energies that coincide with the positive; how do I get for your support to believe in myself? So at this time, I ask that you allow me to draw on the positives, still realizing the negatives are there, but focusing on the positives. Please let me feel your presence, the presence that comes when I least expect it, but when I need it most.

Amen.

February 11

16 years ago today I was diagnosed with MS. It was a day that began with a series of random tests. Then, during an MRI of a region of my spine, all the tests changed. After 3 years of being told, "this can't be MS," I was told "you have MS." And what a journey it has been!

This week I had an appointment with my (awesome) MS doc who I call "Count." He told me I'm ok--my MS is treated kind of like a spinal cord injury because even after this long, the MS remains in 1 spot in my spine, but not in my brain. So my difficulties walking are because the spinal area is smaller than the brain. My doctor told me, well, legs, not as important as (he points to the following) the mind and the heart, which I must keep strong. But...something was not captured there.

Today I went and bought a necklace to capture the "forgotten." Good things can happen in February, really. My daughter was born in Feb, three days shy of when my Grandma would have turned 100 (she lived on earth to be 99). The necklace has an amethyst stone, the birthstone for Feb. And it is part of a cross, so the forgotten thing to keep strong is FAITH, which has seen me through so much.

Faith made me feel the presence of God, shortly after I was diagnosed with MS. Faith has allowed me to feel God's presence, through good times and bad. And in the worst of it all, when a reaction to steroids threw me into a deep depression, faith found me driving to church (which made no sense at the time), and faith let me feel God there, and I knew then that I needed help. Faith--through good times and bad--the support of God. And as I so often write,

Thanks be to God.

Look my way and say hello

It's just the start of a letter to the editor--draft 1, so subect to much revision!

Earlier this year I attended the Kindergarten "get to know people" party, where I sat in my wheelchair and watched as friends who knew each other talked to each other, families who didn't know each other sat hesitantly at cafeteria tables and made light conversation, my family found our own place at the end of a cafeteria table where a wheelchair could fit, where no one else was, and eventually my daughter and husband descended a few stairs to join the fun where the new "Kindies" could play and dance. And I sat alone--my wheelchair was too wide to fit between the tables and the steps... I didn't knowing anyone--I was "the person in the wheelchair," and felt very alone. My daughter's teacher said hello, and the music teacher struc up a conversation with me. Those were the highlights of the thankfully brief evening.

Fast forward to ski season--I go to the Breckenridge Adaptive Education Center. At first I knew no one. But when I entered their doors (alone), I was immediately greeted, welcomed, and felt a part of everything. There was room for a wheelchair to move, so I met so many people, and there was a sense of togetherness. I felt valued as a person, where there was no hesitancy from anyone in regard to the wheelchair. Each time I go, I can't wait to see old friends, to see who I will meet, and to turn off the disability flag and instead be known for who I am, not for my disability.

Recently we got an "end of year celebration" announcement in my daughter's backpack and I was so glad that it will happen when we will be out of town. But I still struggle with how to change things--how to go from feelings of isolation to feelings of inclusiveness, where I don't feel like "the lady in the wheelchair"--what should people say, are they afraid they'll offend me, and on and on. I want to get to know people and if the wheelchair allows me to move and people see me, I'll try to get to know them. I've done this when possible.

What should you know? Know you can say hello to a person in a wheelchair. Know the person in the wheelchair probably wants to talk about anything OTHER than the wheelchair. Know the person in the wheelchair has a life, has friends, probably wants more friends, and almost guaranteed, wants to talk to you. So look down--that person may say hello and you may beat them to it. Ask who their kid is, which class their kid is in, where they live, etc. You never know--you may find an unexpected friendship and that would be a truly wonderful thing.

Disability, Parenting, and Safety

Today I got an email from the church that someone has been around the area possibly trying to assault kids (maybe just girls). That's just great. When everyone thinks of church as the safest place, we now have to be careful.

That makes me think about my time as a parent. Lori is almost 6 now and has been more independent than many kids her age. It's not that I don't have my eyes on her, but I have relied on a lot of parents to help keep eyes on her, particularly at church. In a sense, it's like she owns the church. She knows the building inside-out. And outside of church, I can't dart after her like most parents can dart after their children. It's really different. I have the advantage that Lori would ride on my walker when she was younger, and now she's too big for that but still rides on my lap on the wheelchair. But there are times when I can't be right there, when I suppose she could be easly "snatched." When we're home alone without my hubbie, we don't answer the door because I feel vulnerable.

I guess it's all somewhat confusing. And it seem to remain a world almost free of other parents who have disabilities, so it's isolating. For the most part, people help, but I don't think they realize the isolation, the frustration at feeling a bit reliant on others to help. And I really am sick of the comment to Lori, "Are you Mommy's helper?" No, I am the one with the disability. Yes, she helps. But she is a kid-let her live that. I am thankful she has been safe this long.

There should be a support group--parents with disabilities--where we can air our frusrations, but also air the joys of being a parent. There must be others out there.............

Today--one of the best days of my life

Well, before today, this past week was horrible. So I thought of calling this post inclusion trumps exclusion. So, the inclusion part.

This morning, my daughter and I headed to Breckenridge where I, or we, ski. I've been thinking that I am resigned to falling a bunch every time I do the blue level (intermediate). I completely panic. But not today. Today I listened to Charlie (my instructor, but more of a friend), and just did what he said, and it worked! The impossible becomes possible, after a ferocious MS attack, after a bad week at work. This didn't make it happen (well, not exactly), but last night I talked to God--I guess that's what it's called--maybe contemplative prayer. I asked God to let me let go of the past week, and to be a part of the inclusive environment of the adaptive center, to help me let go of my panic. Then my daughter, who is almost 6, and I did a run together (green--beginner). She is awesome--has no fear-fast! That from a girly-girl! and the inclusion--I feel so myself there--so welcomed, such a part of it all. Everyone is welcomed and a part, no matter what their disability--accommodations are made, and everyone is challenged. It's like a home.

And the exclusion. Not today. Today I celebrate inclusion, being a part of something, feeling welcomed, loved, and when I did something I thought I would never do, I feell c elebrated. Thanks be to God for helping to let go of the past for a day, for helping me let go of panic, for helping me to see that people with disabilities are included, valued, loved, and celebrated.

You can't take my steps or feel my pain, but you can walk beside me.

This is really just a link to a cool song.

http://www.reachwithme.com/download.html

Then listen to "Cold Rain."

Think about it. I can't count the times I feel alone; I feel ignored; I feel people are afraid to just say hello to me. And when people do say hello, it's about the wheelchair or the disability. This song says what is so awesome--that you can just walk beside me. We can do things together. Guess what? We can talk about anything. And please, let's get to know each other before we even think of talking about the wheelchair, the walker, or the disability. Let's be friends.

Thanks to God for people who write songs like this.

Moving Ahead

I think this may be the last post about my most recent MS attack, because I have some other things I wanted to write--relating policy and faith, utilizing disability to mentor those who enter a medical profession, a book review, etc. So many thoughts, so little time.

But, with cat on lap (see previous post), my update. Next attack hopefully I'll remember to look back and compare.

Things have settled down mostly. Yesterday my balance seemed to come back and I was able to do all of my balancing exercises. My upper body strength has returned. I feel less fatigued. My legs are not having more than the usual spasms, they do not ache, and they are not numb. They are still tired and drag more than usual when I am using Bart (my walker). I am not walking as far as I was. My hope is that my legs will improve next--I'll keep trying with them. My hope is that now I can resume my exercise routine. Frustration and feelings of hopelessness have also improved.

And what allowed this to happen--to start to get better? I'm not sure. I think I finally got sick of not getting enough help, and reached out to women at church and asked for a couple dinners for this week. Then when I got home from work, I didn't have to use that energy. I felt guilty asking, but I also thought something had to help. People cooked great dinners. Then there's the random nature of MS where the recovery might be random.

So I move on. I made a big deadline at work (stress probably didn't help the attack). I am going to a lunch tomorrow with other ADA experts (I'm still becoming one). The semester has started at school (I'm going for a Masters in Public Affairs). And I can now be a better mom because things are better. God with me through all of this--thanks be to the help of people at church, thanks be for me getting more rest, and as usual, thanks be to God.

And now to get the cat off my lap :)

The Cat

I love my cat, Boo Boo. I'm surprised she isn't here right now, requesting my lap. I'm typing on the laptop and when not doing that, I may be doing exercises on the floor. She will walk to me and pace, as if to say, "it's lap time." When I work in our office, she more blatantly comes in and meows to announce her presence.

In the past week or 2, she has been here more often. A bit strange, but it has fit with my MS out of control. It's as if she is telling me NOT to do my exercises, but to rest. Stop. Pet her. She knows--she's in renal failure--let's rest together.

And in between those times of her insistence of rest, there is chaos. Steroids treated my MS attack. But attacks don't just end. Things seem to be mis-firing all over the place. My knees will now stay locked. But my legs spasm as if they want me to walk, they ache as if they want me to walk. I walk, and they are tired and ask me to sit, which leads back to the spasms. An exhausting week, and when it occurs at night, it is more mentally difficult to handle. By the time it's morning, I'm ready for a nap!

Back to the cat--maybe it's her that can calm the cycle. She's still not here now, but my lap is ready and open.

Meetings

This isn't a religious posting, but I still think God is there.

People have asked me how I know I'm having an MS "attack." So I thought since one is hitting, I'd document it so I remember what to tell people.

Usually they are about 6 months apart. Sometimes they start with a virus, like whatever I had at Christmas, but not always. Generally, the month before the attack, I feel awesome. Then at some point I get really tired. Following that, I start to have a series of meetings. I'll sometimes have these meetings anyway, but they become more frequent. The floor is where I meet--it seems to really like me. Boom, boom, boom. Legs give, hello floor! And when do I know this is really and different than "regularly scheduled" meetings? The meetings are more frequent and generally there is a special meeting, somewhere other than the floor.

This week I was tired, and then yesterday had a series of floor meetings. Today I thought maybe I was ok (I shouldn't do that), so I didn't call my doctor. Then I started feeling "off" at work. I picked up my daughter from school and it was cold! I got the wheelchair back in the car and opened the front door. Then I slung my body around to the meeting of my forehead with the steering wheel. And I didn't make the seat--well, I made it halfway. Then I started to cry at the whole mess and after pulling myself together, re-did the "slinging around" by somehow pulling myself up, and this time doing the usual sling into the chair. No one came along or was there to witness the meeting--help would have been nice.

It was great planning in that it was 5:30pm on Friday, and so I have the weekend ahead of me. Luckily I had some leftover steroids which should be ok until Monday, when I WILL call my doc.

And that is an MS attack (for me).

And God is there, and God is a loving God.

"Those" People and God still there

A few posts ago, someone posted a comment which I deleted because of the language in it. What it basically said was who is Jesus, expressed disbelief in Jesus, and the feeling that Jesus couldn't have been God--this person obviously didn't feel God's presence anywhere. I believe that's where faith can step in.

This part of this post isn't pretty. Yesterday was a frustrating day. I live here in Colorado where it snows in the winter, but not as much as people would think--just enough to be annoying. Yesterday I picked up my daughter at school and took her to dance. We got there and the WHOLE parking lot was free from ice, EXCEPT the accessible spot where I needed to park, which was filled with snow and ice. But I needed to go in. So I parked, got out of the car onto the snow, and then realized under the snow was a layer of ice. I clutched the car, got my walker out, somehow got my bag out, somehow closed the doors, somehow walked backward, and made it into the dance studio (of course, there were no offers for help--people too busy dropping and picking up kids).

We got in, I bought what she needed, and I sat down. A nice lady was telling me about someone who teaches pilates which sounded exciting. She gave me the lady's card and said to use her name as a reference, so I had to admit I didn't know her name. Here it comes. She said she only knew my name because she has a friend named Beth who is HANDICAPPED. That "H" word--hate it!

Leaving dance--back over the ice. Before that, some dad not paying attention almost plowed me over--he wasn't looking--no shock! Getting the walker back in the car is more difficult, and the ice! Some may wonder why I didn't ask for help--too stubborn, I suppose! Anyway, as I was getting the walker in the car, I thought of the person not believing in the presence of God. And I thought where is God now? And then I thought of all the frustration of the afternoon, but I was still there and hadn't fallen. So I think God was with me. And if I had fallen? I don't know what my answer would be. Stuff happens. Bad stuff happens. There aren't reasons. God is still there. That's my leap of faith.

As I say so many times, through whatever good or bad, because good happens and MS just sucks--it does...but through it all,
thanks be to God.