What's Important Now

That's what our cross country and track coach used to ask/tell us - when it was time for prom (staying up all night - which we did anyway) versus getting sleep so we could train and run well (which we also did anyway). But I think about it sometimes - days like today - when it comes down to the fact that family, friends, and faith are most important to me. So today, in somewhat coded language, although I bet it really doesn't matter.

Calm legs - do I have to get up?

Ahhhhhhh... feels good to get up! The cool floor removes the feeling of my feet burning.

Uh oh - it is already hot when I get Nemo, the wheelchair, out of my car at 10.

"Our scores have really gone up the last 3 years." Another person looks at me and smiles. I've been here 3 years. He and I know why. That smile means more than anything.

It's hot. I put Nemo in the car.

10 more minutes. I now need to get Nemo out. It's hot. Rubberband legs. I am exhausted. Get me out of the heat.

Get Larry, the brace off. Get both shoes off now. My feet are on fire!

Check phone and email. Problem. Here comes the bus - whoa - I've been under it, unknowingly, for over an hour, while I was trying to survive the heat.

I must be nice to climb out from under the bus. Getting under there was not nice. In fact, it is shocking it was done. I hope I don't act like that. Maybe I'd be further along if I did. I'd rather not be further along then, if I have to act like that. I won't change to be like that.

I walk. I still do leg lifts. Is Jean Ann ok? Not sure. No real news.

I go to put Nemo in the car. The trunk doesn't shut all the way and it's still hot. This is more complicated than anyone can imagine.

I get Lori. We are both tired. TV time!

30 minutes later, time for soccer.

Lori is fast and not afraid. I see her former daycare provider. We talk. Lori plays. Dave comes to watch. We all have fun.

It is cooler. Tomorrow is a new day.

What's important now are my friends, my family, and God helping me get through this day.

Searching for peace amongst chaos.

Yesterday I tapped my left foot for the first time in forever - I don't recall when. This is lost in everything else.

Today...
Good job.
Under the bus.
Jean Ann.
Emotions.
Stress.
Soccer.
Family.
Calm the storm.

Thanks be to God. I made it. Somewhere there is peace... searching...

It's a journey where I laugh, cry, and wonder why, why, why...

Step Out on Nothing - Byron Pitts

Step out on nothing; step into faith - and so goes the autobiography of 60 Minutes correspondent Byron Pitts. I heard him interviewed on NPR
(http://www.npr.org/templates/story/story.php?storyId=120463986) and finally ordered a copy of his book, finding it hard to put down as school was ending and I was about to go on the new MS drug, Ampyra. Reading his book came at the perfect time for me in terms of learning to go for something, realizing the impacts of family support, and continuing to strive for the seemingly impossible.

Step Out on Nothing:

Each chapter title is either intriguing or meaningful in itself, and chapters are preceded with a corresponding verse from the Bible or a quote (and I love both).

Chapter 8: Never Say I'll Try, Say I Will
"Let not your heart be troubled, neither let it be afraid." -John 14:27
"Where the spirit of the Lord is, there is peace; where the Spirit of the Lord is, there is love." - Stephen R. Adams

Reading this chapter came at this moment in my life, within the past week (so who knows if the moment will be significant in the long-run) where I had just started Ampyra, the new medicine, and surprisingly it was already starting to work. But I found _myself_ doubting _myself_ a bit with improvements being noticed so quickly after 20 years of MS and nothing really helpful. In terms of walking, I wondered what was possible? What should I try? Would I fail? If I failed, what would that mean?

I also thought about the fact that I find myself continually contemplating my career, my dreams for it, dreams which have come from pursuing my Masters degree. These dreams seem like "the impossible dream(s)," (Man of La Mancha) yet there are glimpses or periods when I am hopeful - a career of combining related topics and the interplay between the topics: health care policy, disparities for people with disabilities, poverty, inclusiveness and capturing the voice of people with disabilities within healthcare. There are glimpses of hope in pursuing this where I work and times of complete frustration. It may be impossible in that setting.

Pitts was an illiterate youth with a severe stutter and has become a well-known 60 Minutes correspondent. In Chapter 8, he finds himself struggling with stuttering during college, but at the same time aiming toward a career in broadcast journalism. Although he could read, broadcast journalism still seems like an impossible dream. And though I'm not a believer, as he is, in a great plan God has for each person, Pitts resonates with me in other ways. He says, "I was raised to believe that if you speak your dreams long enough and loud enough, eventually others will dream and speak with you." That is motivating - the medicine I started, my career - my impossible dreams - possible? "Never say I'll try. Say I will!"

Many other parts of the book were excellent - especially the first part of the book where Pitts focuses on illiteracy and stuttering - and how his family and faith helped him.

So this post doesn't get eternally long with my opinions of what he said, here are some glances. I'd recommend this book. I don't follow some of his religious opinions, but it was still worth every cent and minute.

Step Out on Nothing, by Byron Pitts.

"We are all reminded at times in our lives, how difficult it is to stay on course. Getting off course is a four-letter word - easy ... sometimes, I discovered, I had to be at the front of the line and play the game alone." (felt that way with the medicine and my impossible dream)

" 'I have faith - that's just all it is. I can't attribute it to anything else but just saying, All right, God's not going to give you anything you can't handle, so, you know, I just wish He didn't trust me so much, you know,' and his smile even broadened."

"It's never been about the destination for me. It's all about the journey." (Hey wait, that's exactly what I think!)

"I know that in all the darkest, loneliest moments of my life, when I felt the world was against me and the winds of conventional wisdom were against me, in those moments, God held me in the palm of His hand. His son, Jesus Christ, died so I might live. His sacrifice set the stage for every success I've been blessed to achieve thus far. When to the outside world it appeared I was stepping out on nothing, I was standing in the center of God's hands. He's got big hands. There's plenty of room." (Can I make this my mission statement and put it on the outside of my cube without getting fired? Probably not - I'll find somewhere else for it.)

"(My mother)taught me that in times of uncertainty, step to a place where God is. Step out in nothing, and it will take you far. Safe journey." (I think I need to take a bigger step out)

"... what is your role? What do you dream? And you can't dream without faith ... trouble will surely come. Know this. If you take one step, God will take two. Have faith in something greater than yourself."

"Real success is not measured by how much you take from this life but by how much you give to it." (Mission statement #2?)

"Don't simply be good - be better. Better isn't good enough, so be the best. Don't settle for your best. Be an angel."

Thank you, Mr. Pitts, for entering my journey. You have given me an extra kick of hope, and the drive to keep [pursuing my dreams).

Thanks be to God.

Peace.

Ampyra ... peace

Ampyra - the new drug to help strength and walking speed for people with MS. Seems hit or miss as to whether it works. Hit?

20 years in the making. Why so long? Risk of seizures. Many trials trying different dosages. Finally found the right dose, extended release, 2 pills, take 1 and then 12 hours later the other.

I started last Saturday.
Saturday - am I really dizzy or just nervous? I think just nervous.

Sunday morning - legs are shaky. Sunday afternoon - my head hurts - ouch!

Monday - hmmm... is something happening? I go home and actually have energy, and stand, talking to my mom, for 15 minutes.

Tuesday - my legs are stronger! I'm walking further at work and taking fewer breaks. I'm not hungry. I get a headache.

Wednesday - working from home, doing "speed" loops around the house. Headache.

Thursday - "Never say I'll try. Say I will." I am able to use my legs rather than just my arms when getting out of the car. At work, I will! I set a PR for distance and number of walks. Lori and I go to a movie and my legs protest, jumping and jumping, so I move them around because the jumping hurts. Not hungry. Slight headache. My friend, Jean Ann, is brought back to life by technology. Emotional day. I get a great gift and Jean Ann is afraid, can't breathe, and fights for life. It's a roller coaster. Cheer or cry?

Friday - today - I'm a bit tired from pushing it yesterday and from insomnia that is another side effect, and while I'm having fun, I'm emotional about Jean Ann. But I still walk a ton at work.

So each day this week has been a gift. Looking at me, one wouldn't think so - this isn't a graceful walk. This is the MS walk, maybe a different variety. But this is peace for me. And Ampyra is a hit - I got a week of great walking.

My prayers are with Jean Ann and her family, that they may all find peace in the chaos and unfairness of ALS.

May God be with us as we search and find peace, in whatever sense that is.

"Mommy, someone asked..."

"Mommy, someone asked me what it's like to have a mommy in a wheelchair."

My first gut reactions were who?! Why?! What?! Ask them what it's like to have a mommy who walks, wears glasses, is overweight, is annoying, etc.

But I calmly asked her who asked (one of her good friends) and what she thought/said.

She said, "I don't know. I don't know what it's like to have a walking mommy."

I like that answer!

Then we talked... what are the good parts and bad parts?
- Mommy can't jump out of the car and run anywhere. But mommy can wheel, and has a lap for when Lori gets tired and wants a ride.
- Lori, age 7, knows how to assemble and disassemble a wheelchair and can get the walker in the car (with some grunting) - not many 7 year olds can do that! Of course, it's annoying when mommy is tired and requests that Lori do it, rather than Lori volunteering.
- Lori gets to push mommy around when she wants - how many kids get to push their parents around? :)
- Lori probably gets to ski more than most 7 year olds. But she doesn't get to ski as much with her mommy, because Lori is already too good.
- (Beth's point of view) Lori goes to a show put on by people with disabilities. During the talkback, Lori asked "why do so many people in this play have disabilities?" She didn't realize everyone had a disability, or that people with disabilities can't get acting gigs like those without disabilities.

I suppose we'll have more of these talks. Last night was back to school night. My husband and I went to her classroom and it's set up for kids, so I couldn't get to her desk. For other people maybe it's no big deal, but stuff like that is a letdown for me. I want to be in the middle of it, not off to the side.

And in the past week, I've gone on a medicine which is helping me to walk further and it's giving me great strength. I feel like shouting this to the world. But it's invisible to most, who still see me in the wheelchair, because I'll still use it for long distances, and there are people who can't get past the wheelchair. And so Lori will still be asked, "What's it like?"

But maybe she can now add some of the benefits, like how she gets to "push me around." Or perhaps not. I'll walk more and more. "Never say I'll try. Say I will." (Byron Pitts)

This one day

The new medicine started Saturday.

Each day, for years, from 4 to 7 pm - complete exhaustion. Very little walking.

Until today.

I walked.

I got out of a chair, clinging, but this chair always defeats me.

I will always want more.

I will always want to run.

I will ALWAYS miss running more than anyone will know.

But I will take this one day, this brief time, and be thankful, just as I was thankful for each day I ran until I could no longer run.

And there is peace.

Dear (fill in the blank),

We went on vacation to Estes Park (not far) for 3 days this week. I sometimes wish I could give random (sometimes) people notes on things - somewhat like Facebook entries. Perspectives from Beth with MS and wheelchair/walker/etc, during vacation. Here goes...

Dear...

GOD: We did it! I think all the things below may make you laugh, and you could almost say "I told you so," although that wouldn't be your style. Thanks for coming along on the adventure. As always, I am trying to learn to accept the things I cannot change, courage, to change the things I can, and wisdom to know the difference.

SELF: Really Beth, on vacations, you ALWAYS find the best moments/times are those that are unplanned/free. Relax, let go - there is happiness... in meandering and laughing down the riverwalk in Estes, enjoying the big bathtub in the motel, relaxing in the simplicity of the hotel.

APPENZELL INN: Do you know how awesome you are? Settled between chains, just off the highway, you are unique. Your owners chose to put an accessible room on the 2nd floor. The room has a vaulted ceiling, incredible view, big bathtub, perfect shower, bars that don't look like a nursing home's,and more. I've never had this. Accessible rooms are always on the first floor, generally away from everything, as if hidden. This room was right in the middle of everything, with the most stunning view. Truly incredible. Thank you.

LORI: See dear self - those were our best times. Let's skip the planned stuff. I don't know what you should tell people when they ask what it's like to have a mom who uses a wheelchair. I should make that a blog entry! :) Next time...

I KNOW YOU!: I never thought I'd see you, my orthopedic surgeon, on the hiking trail! And you recognized me! So, I see you may be a nature person as well - good to see you! Yes, my shoulder is gradually getting better, but I wish it would get better faster. When can I swim, rather than "flub?" I'm just "flubbing" now - maybe next summer, I'll be swimming :)

TECHNOLOGY: I left you behind which was fun. We didn't turn on the TV either. The quiet space was nice. And I survived without my laptop! :)

MS: The swimming pool is a great place to "walk" so you can't keep me awake with spasms. Gotcha! :)

DUDE WHO PARKED ON STRIPED LINES: OK, dude. That was not a parking spot. Nope. Striped lines designate the end of parking. Perhaps there was room there for a Smart Car, but not your bigger than big SUV. So when you smiled and I then told you it wasn't a parking space, and seemed really mad, I was. I could hardly get my legs in my car. I'm sorry dude - you can walk; I can't - and I need extra space to get my legs in the car which is why I chose that spot. So dude, maybe next time don't park there, or buy a smaller car.

???: Whoever puts the toilet paper dispensers in bathrooms... if you put the BIG dispensers ABOVE the bar, it's dangerous for people like me. They're supposed to go 12 inches above the bar which also doesn't work well. Can you put your gigantic dispensers below the bar? I know it doesn't make sense to you, so contact me for a free demo as to the why :)

RANDOM PEOPLE: There are 1 or 2 accessible bathrooms per large restroom area. They are not dressing rooms. I know they are more comfortable, but if you're just using them for comfort, could you save them for people who need them? I do understand if you need them for bad knees, etc.

25 FEET: Yes, I timed walking you 4 different times - talk about variability! Should I take the average time as the baseline for starting this new medicine?

Live, laugh love.

Peace.

Celebrating yesterday, today, and 25 feet in the future

Wow. These are incredible times.

Yesterday.
Denver is home to the one and only professional group PHAMALY, an ensemble comprised completely of people with disabilities. Each year they put on, among other things, a musical. Last year it was the Man of La Mancha, where I learned about dreaming, and living for, the impossible dream. This year they performed Beauty and the Beast. One may think, sure, Disney, Beauty and the Beast. But this group does everything in a slightly different context. In one sense the viewer forgets all the actors have disabilities, and in another sense, the production gives a unique point of view from the standpoint of people with disabilities.

(skip this paragraph if you're still planning to go to this production) The producer changes things a bit - the prince in the beginning is spoiled because he was born blind and his parents abandon him. So there is "no love in his heart" - why would there be? The Beast can see and wants to return to "Be Human Again," and in so doing, does become his human self again - the self who cannot see. And there is so much more added to this production that is unique to disability and brought me to tears. It's about being different, feeling like one doesn't belong - it's not about the pretty Disney stuff.

Today.
It's the 20th anniversary of the Americans with Disabilities Act (ADA). That's the biggest piece of civil rights legislation for people with disabilities. Sure, we have a long way to go. In 2008, the ADA Amendments Act was passed because everyone was confused - what does "disability" really mean? And there is still exclusion and discrimination - lack of monitoring parking spots, old curb cuts that need to be redone, interviews canceled when it's discovered an applicant uses a wheelchair. So many of us encounter these things.

But we have curb cuts; we have parking spots; we are working on employment. We are no longer invisible - people with disabilities can now be seen in society. It's exciting!

25 feet in the future.
Today I spoke with a pharmacist in California. Saturday I start a newly approved medicine desigend to improve walking speed and strength. Before then I need to time how long it takes me to walk 25 feet, so I can compare. For some people the medicine is amazing; for others, it's good; for others, it doesn't do much. For Beth? I'm hoping for amazing.

And so, why try this, since I still won't be running? The logical side of me says if I can walk a bit more and a bit faster, my leg spasms won't be as bad, since not walking enough causes spasms to increase. But beyond that - there's much more. Why not? If it doesn't do much, then I want to have tried it. What if it does a lot? It's a quality of life thing. For others, the gain in walking wouldn't change their life much. But for me? Absolutely - this I can't really explain.

Some might say prayers that God will have this medicine help me. But that doesn't fall in line with what I believe. God is there, however the medicine works or does not work, with me on the journey, not directing it.

God - there on the journey as we, people with disabilities, strive for inclusion, a level playing field, acceptance.

God there yesterday as I watched this miracle of people with all kinds of disabilities come together to end the show. It was unique and very powerful.

Continuing various journeys.