Friday, August 27, 2010

HOPE endures all things

"Beth, how about this? First you have to be able to stand, not leaning."

... (time elapses) ...

"But I do squats now. I couldn't do those a month ago. I can lift my left foot. I couldn't do that a month ago."

"Well, they probably look like this ... those aren't real squats."


That wasn't why I was there. But that was the end of things, a horrible end. I left, alone.

I put my wheelchair in the car. An African American woman walking by on her way to the bus asked if she could help. I asked her to close the trunk. (That's hard for my shoulder still) She did. For those few seconds, I didn't feel alone.

I got in the car and backed out as one of the 2 people from the office came out and got into her Lexus. It's interesting. The person going to the bus helps. The person with the Lexus (not to generalize all people who own a Lexus) didn't think to ask, when I left, if I was ok.

I wasn't ok. The appointment had been delayed. I got stuck in traffic. It was 90+ degrees outside. The AC inside the building wasn't quite going yet, so it was about 85 degrees. Things weren't looking good. I simply can't take heat. Combine heat and stress? Recipe for disaster.

Could I stand? No. Could I do squats? No.

But at home I can. And the squats - I do them correctly.

The 2 people might as well have laughed out loud. I was wasting their time.

I drove home. I cried. I didn't know why. I picked up my daughter. I was really late. I wanted to crawl in a hole somewhere and be alone. But life continues - dinner, homework, piano, bedtime, late work to finish a writing. No hole. No time to think.

Today I thought more... what happened?

In one minute, hope was taken. The potential of CAN was replaced by CAN'T. Looking back at life, I've been told CAN'T too many times, but I've turned CAN'T into CAN. And I think hope can help with that.

It may be offensive, but flip some things:

1 Corinthians 13 (flipped)

13:1 If I speak in the tongues of men and of angels, but have not HOPE, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not HOPE, I am nothing. 3 If I give away all I have, and if I deliver up my body to be burned, [1] but have not HOPE, I gain nothing.

4 HOPE is patient and kind; HOPE does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; [2] 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 HOPE bears all things, believes all things, (loves) all things, endures all things.

8 HOPE never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away. 9 For we know in part and we prophesy in part, 10 but when the perfect comes, the partial will pass away. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. 12 For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.

13 So now faith, hope, and love abide, these three...

And the passage says love is the greatest of the three. But as I go through life, I cannot continue without HOPE. So I'll go with faith, HOPE, and love being equally important. You need all three. I'm sure I'm missing something, but that's ok.

And I'll see where HOPE takes me. I think it keeps me going.


Wednesday, August 25, 2010

The unseen

Invisible God, we pray for all of humanity that you so wondrously created. Today we pray especially for those people in our lives and communities whom we don't see - those who are sick and shut in, those who we pass by and choose not to see, those who we don't even realize are missing from our sight. Bless them Lord. Remind them that they are precious in your sight, and that you see them even when we don't. Amen.
Courtesy of Sojourner's "Verse and Voice" 8/25/10

So many different ways to think about it. Lately, it seems like most of my friends with disabilities are having or have had more trouble. I suppose it can go with the "disability" territory. So to me... the unseen by me or others...

- the friend who communicates with her eyes from Texas
- the person who felt shut in after surgery and found it necessary to "escape" the situation
- the many people who are not seen because of disability
- the same people who are not seen and many times not noticed
- the people I don't see for whatever reason
- the friends who will be going to the hospital to help pain associated with their disability where the disability is unseen and thus, often not believed
- so many others outside of strictly disability

They are all precious and God is with them through their journeys.


Saturday, August 21, 2010

Cycle of Hope

"...suffering produces endurance,
and endurance produces character,
and character produces hope,
and hope does not disappoint us."
- Romans 5:3-5

My favorite passage from the Bible, and so begins Tricia Downing's new book, Cycle of Hope, arranged according to that passage, and given to me by a good friend. Tricia is an athlete - in reading what she wrote, I couldn't help but compare it to my journey - similarities and differences.

It's an account of her journey after being hit by a car and paralyzed from the chest down. In an instant, she loses what she loves, and as she leaves one hospital, she recalls, "Wait a minute. I am leaving the hospital. I am leaving the place where they put you back together again and make you well, but... I am NOT well. I am never going to be well again." Sounds a tiny bit like when I was diagnosed with MS, realized my dreams of competitive running were gone, and asked the doctor, "So, should I lie down here on the floor and die?"

She was hit by someone - someone caused this. What causes MS? Tricia's life changes in an instant. With MS, my life has been a series of gradual changes over 20 years. Tricia found she could be an athlete while at Craig Hospital. For me it took years before I heard of a program for people with disabilities and got involved again.

I love the "rawness" of Cycle of Hope. It spells real feelings - loss is not easy - relationships change or cease to exist - life is not the same - activities are not the same even when able to be done differently. There's not a sense of "Woo hoo - I can still swim." There is more a sense of, "this isn't the same." People explain that Tricia will still be able to do things - just differently. There is bitterness in being told this, although with time it is realized how much people were trying to help. But the "rawness" of it all is there - too often in stories like this loss is sugar-coated with some kind of "success."

In all of this, I thought of a comparison to my 20 years. 20 years of learning to do things differently. I have an "attack," and perhaps I have to learn how to open the trunk a bit differently because my balance doesn't completely return. A big difference is that I've had little training. I was told by a neurologist to get a power chair. I got a manual chair after talking to friends and knowing I was strong enough. And there it was - the wheelchair - no training on how to use it - enjoy! Hand controls - no guidance there - things have changed now, but I figured out hand controls by myself. So it's different - sudden versus gradual change. Perhaps there is more time to adjust with gradual change. But there is also the chance for people to insert comments about decline when I started to use a wheelchair, rather than being glad that I had the freedom to go further distances again.

Tricia aims to complete an Ironman competition. With MS, I was ecstatic to make it up Vail Pass via handcycle (injuring my shoulder in the process). So there are times of success - remaining an athlete, seeking to conquer things.

And to give continued hope, there is the statement, "life is not measured in hours and minutes, but in heart." That is so true.

We all continue to pursue things we want to conquer. This book shows how to do that - with all the raw hard parts of the journey that can get in the way.

Cycle of Hope, by Tricia Downing. Available at Tattered Cover stores in Colorado, or via Get a copy and read it.


Thursday, August 19, 2010


Via Facebook, I saw a video on inclusion, from all different perspectives. The end challenges viewers to answer "I know I'm included when...", share it, have others do the same, and then think what it means for me to be inclusive of others in a diverse community. Here's mine - it's from the standpoint of disability...

I know I'm included when...

- people talk to me.

- people invite me to come to things, even if they are not accessible. Where there's a will, there's a way.

- people ask my opinion and value it.

- I can be Beth and laugh.

More on this...

The environment can be everything. I went to my daughter's soccer practice yesterday. 91 degrees and Beth do not get along. I pushed myself across 2 1/2 fields and then a nice guy asked if I wanted help. YES, PLEASE! I then watched practiced and no one talked to me - there were groups of 2, but I felt alone (until my husband showed up!). I tried to talk to one guy but he had his earphones in so he didn't hear me. Very strange. I then hesitated to break into the other conversations. Perhaps I should randomly ask people "how do you know when you're included? :)

Today I noticed I was 20 minutes up the road and in a different setting, but everyone was talking to everyone. I was invited; I laughed; I was included.

It's mostly the norm - traveling these 20 minutes up the road to feel included. It's also very strange.

I wonder how other people would answer the same inclusion fill in the blank. Everyone can do it. And then we could all learn something.


Saturday, August 14, 2010


There are so many terms used to describe people with disabilities. Recently, some important person (I'm bad with names, so I forget who) said something to the effect of we will never truly be able to advance in the education of people with disabilities until we stop using the word special.

Special - not a word I like. It mostly stems from the government - special needs programs. There's the Special Olympics. Most of the times, special is used to describe people with developmental disabilities. That's fine - how do they feel about the term special? Perhaps it's ok with them.

Therapeutic recreation - just discovered this term! Then I discovered it's a common term. Problem - to me, therapy is not fun, so pairing it with recreation doesn't go well. Our Parks and Rec dept has a new therapeutic rec component. So I asked further. Oh - it's mainly for people with developmental disabilities. That's fantastic. So can you also start a handcycling club? But then, that's more like adaptive sports. And people with developmental disabilities want adaptive sports too.

Where things go - therapeutic rec info is on the page opposite the senior programs! It's not by the sports programs. That's interesting. Should there be a separate category - adaptive sports? No - because if I want to start my handcycling club, it's going to therapeutic rec. And I have to start it. That's too much right now since I'm barely cycling. I'll stick with the cycling groups I know.

Handicapped - toss it out - how long will this take?

ADA - Americans with Disabilities Act - that's how we get to people with disabilities and I am starting to see children with disabilities instead of special needs kids. If you think about it, it must be an interesting transition to go from special needs kid to person with a disability. Is there a ceremony?

Then in the same bulletin as therapeutic rec, I saw "ADA/special populatiosn." The following paragraph talked about people with disabilities. It's like the bulletin was trying in include every possible tterm. At least they didn't use the word handicapped.

Of course, people like to be called different things. There's also challenged, differently-abled, disAbility (capital A), and on and on. And then there's what symbol should be used for disability - a whole other subject!

But finally, and most importantly, there's a new generation. Andy Imparato (nationally recognized advocate who helped draft health care reform legislation, and I think I finally have his name right!) talked about this generation. My generation got in the door for employment - some are happy to be in the door; some of us want to advance and are going further with education. The new generation takes it a step further. Andy says the new generation has high EXPECTATIONS - they ASSUME being able to get in the door - they ASSUME moving past that. And to do that - some of the terminology should change, so people are people, and we have more positive labels for disability.

Times are changing. It's "challenging" to try to get some changes through - to get people to see that as a person who uses a wheelchair, I may still have high goals. But we're getting there. The new generation will take it even further - they're starting at a different place than where I started, which was fear of assumptions on disability. It seems to me they're starting with confidence. And with that, the voice of people with disabilities only gets stronger.

Wednesday, August 11, 2010

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.

Good job.
Under the bus.
Jean Ann.
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...

Sunday, August 8, 2010

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
( 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.


Friday, August 6, 2010

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.

Wednesday, August 4, 2010

"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)

Monday, August 2, 2010

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.