Thursday, January 27, 2011


It's all very strange.

We lose those we love.
We go to work the next day.
People ask "how are you?"
How to answer?

Wear a sign?
Say anything?
Somehow continue.
Very few people know.

"How are you?"
Happy that pain is gone,
that spirit is lifted,
that finally there is peace.

"How are you?"
Relieved - there is some type of closure.
Sad at unfairness.
Sad for the family.
Sad for the girls whose mom cannot make everything better now.

"How are you?"
It all weaves together.
Only a few people know.
It is strange that so many people experience this all the time.
We all ask "how are you?" and how does anyone know how anyone really is?

Strange times.
One friend continued to lose all.
The other gained.
For one friend there was nothing to help.
For the other friend there was something new.

One was too weak to remain in this world.
The other began the next day physically stronger.

One "end."
One "beginning."

There is peace.
There is pause.
There are silent times.
There are joyous memories.
There is love.

"If these walls could talk; if these stairs could sing; if these floors could tell their tale, they'd say just one thing ...

What the world needs most right now is the best out of you and me."

She would want that.


Sunday, January 23, 2011

Stories upon Stories

With each skiing trip it seems I could tell 1,000 stories or more - good, bad, interesting, ...

- How does everyone make it through the worst weather on roads and then spin out when the roads finally improve?

- How is disability "dropped at the door" every time I go skiing? How does the BOEC (adaptive program) do that?

- Volunteers at the BOEC - they give so much - they give it weekly - they are amazing.

- Let's just ski. At some point, the instruction must atop, despite bad habits, and the skier must just ski. I did that. It was ugly, but I finished.

- There are lots of helpful people out there. They hold the door and wait while I meander up the sidewalk. They are the hotel staff who quickly make staying up there worth it by helping. I'm grateful.

- My daughter told me to just take the walker into the hotel. No wheelchair. I did it (see previous note on hotel help!)

- Another blog could be written on how we treat each other. There is so much kindness. On the roads, there is so much anger and chaos which is probably why there were so many spin-outs, emergency lights, etc. Even after seeing all this, there were still angry people doing things that could result in more road problems.

- I was listening to a radio show on how the AZ shooting means we're all going to think about treating each other better while I was driving through the behavior in the previous bullet point. Really, it's not just the politicians. It's everyone. Think about it.

- As I was ending day 2 of great skiing, I thought of my friend Jean Ann. "You could have won that race." That's what went through my head as I was tired. Each turn - I wanted to win it. And then I let go at the end and went straight down the hill to finish. Imagination works wonders. I saw her smiling at me. It's good I had goggles because there were tears.

- I finished day 2 by seeing Jean Ann smiling. Then Lori was right in front of me. It doesn't get any better than that.

- "Just take the helmet, Beth." Yes! I get my favorite helmet. It's really a piece of junk probably. But it's the "lucky" helmet, and I love it. So I have my totally prized, probably junky, all scratched up, lucky helmet.

- Through the good, bad, and ugly, God was there. And I bet God, assuming a sense of humor, laughed quite a bit.

- Each of these bullets could be a longer story, but it's time to stop.



Thursday, January 20, 2011

Never say goodbye

"You could have won that race. You know that, right?"

A memory I'll always remember.

I was second.

Overwhelming praise for first.

Condolences for third on down.

Lost in the shuffle.

Except by that unique person, that coach who said "Beth?"

I am Beth. That is Jean Ann.

I have MS. She has ALS.

I will ski tomorrow. She will see her daughter perform one last time.

We will both win.

She will end her baptismal journey.

I can't say goodbye.


Her words,
her caring,
will remain with me always.


Tuesday, January 18, 2011

"Repeat after me ... "

... a short part of the book "Just Don't Fall."

"First thing. Repeat after me. Life is tough.
That's the bad news. The second part is the good news.
Life is beautiful."

Josh Sundquist was 9 when life changed. Cancer took his leg and his dreams of playing soccer, making the really good team, getting the cool jersey - all gone and he is told he won't be able to play soccer (at least not like he did) again.

We have different stories, but it's interesting. Before my diagnosis, I remember my doctor (the only one who ever seemed to think this was MS before the day it was diagnosed) telling me I needed to get used to the fact that I might not be able to run competitively again.

What?!! You have GOT to be kidding me - ouch. Similar reaction.


A search for something, some new goal, some way to define oneself.

Josh Sundquist found it in skiing. He made it to Terrino in the Paralympics. It wasn't an easy road to make it there. But he found something, pursued it, got it. He got the jersey (the book is really funny in describing things like his desire for this).

I found it interesting to read how he discovered skiing. He "got it" (the feeling of it) right away. I also discovered skiing - not in quite the same way - but I got to get outside again. I read about his strategies - how he was taught - to ski. And I recalled someone giving me the same strategies.

But there was a difference. Josh saw skiing as a complete replacement (almost) to soccer - something he could finally do well. He could pass people - he could be good. He could let go.

Although skiing isn't a total replacement, or even remotely close, to running for me, I think I got it. I had to let go. And I did that the last time I went skiing.

Different disabilities, different lives, but common themes. He goes through life telling himself there is not time to fail. He can't let people down. This is sounding familiar - different reasons.

He is told...
"What if you could succeed if you failed? What if you did your best, and that was enough? You gave one hundred percent effort, and even if you didn't reach one hundred percent success, you accepted it, because there's nothing you can do to change what's already happened."

I skied. It wasn't perfect. For the first time I fell by carving too much - being too aggressive. One hundred percent, finally. It felt great.

"Life is tough.
That's the bad news. The second part is the good news.
Life is beautiful."

Yes, life IS beautiful.


Friday, January 14, 2011

Provigil and Nuvigil - the difference - MS

Writing this in the off-chance someone is being switched from Provigil to Nuvigil, maybe has MS and maybe doesn't.

I was and am back on Provigil. When I searched for "Provigil Nuvigil difference" on the Internet, I mostly found things by people with narcolepsy who were on either one with mixed reactions. I found a bit on MS and just Nuvigil, mostly positive. But who is being converted, why, and how's it going for people with MS? There's not much there, and experiences will differ, but here's mine.

Cephalon is losing its patent for Provigil in 2012, so the price of it has been increasing. Meantime, Cephalon is heavily marketing Nuvigil which is a single isomer version of Provigil. Nuvigil is stronger than Provigil and acts longer, so everyone is going on it. It should work better. But for me? It backfired.

I started Provigil as an off-label drug for MS-related fatigue, although a small clinical trial did show it works for MS. Provigil is also used for sleep apnea, which I think I have/had, but Provigil changed that. Nuvigil sounded good as well. But it's not exactly the same as Provigil.

I knew pretty quickly that Nuvigil wasn't working for me. Sure - I was awake - but I was in a cloud at best. In the afternoon, I drank coffee like water and still wanted to fall asleep. I couldn't sleep - it was horrible. People at work knew about this. They said I looked tired and I was - I was a walking/wheeling zombie. And I was depressed. When you go off Provigil, this can happen, and it did. I had 2 really bad days before I just wanted to stare at a wall. I didn't really feel like the medical community believed me, but I knew I wasn't me. I fought to get back on Provigil because physically as a zombie I was also getting worse.

It took a bit of time, but I got Provigil back. And quickly, I was fine. Has this happened to other people? Drugs are so tricky. Does the combo of Provigil and Ampyra mean anything.

Back quickly, and today another Ampyra breakthrough for me. I keep walking more and more. I'm getting stronger. And I believe everything helps. Leaving work, I wanted to scream "YES!" at walking further, again. I take Ampyra; I take Provigil; and I work very hard on a bunch of boring exercises. I got in my car and turned on the song that reminds me that everything is possible - just show people. I'll put part of the lyrics after this post. It's from Curious George. I'll turn the whole thing upside down, from Provigil to Ampyra and everything I can find.

"I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away."

"Who's to say what's impossible?
They forgot ... "

Upside-Down Lyrics

Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away

Who's to say
I can't do everything
Well I can try
And as I roll along I begin to find
Things aren't always just what they seem

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
This world keeps spinning and there's no time to waste
Well it all keeps spinning spinning round and round and

Upside down
Who's to say what's impossible and can't be found
I don't want this feeling to go away

Please don't go away
Please don't go away
Please don't go away
Is this how it's supposed to be
Is this how it's supposed to be

Monday, January 10, 2011

How we get to "hate"

I've been thinking about something and the best way to deal with it, or "let it go," is sometimes to write about it.

I was so proud to use my walker to go to an event recently. At this event, I've always been seated early, because it's in an older building which isn't exactly accessible. I knew "something" had happened in this that involved me, but wasn't sure what. Now I know.

"Are you going to seat her first, AGAIN?!!" a person I know asked out of my earshot. The person seating everyone said "I guarantee you that Beth would LOVE to be able to sit up in the leveled seating. But she can't."

Yes, Beth would love to have legs that worked, to wait in line to see which spots were left. Yes, I'd rather have that.

While I know things like this are said, and others like "you're so lucky to get close-up parking" or "I want to go to the amusement park with you so I don't have to wait in line," they're generally not meant to be mean natured. I assume this because they are said directly to me and the person saying them is usually joking.

I didn't expect it, but this hurt. Really? After the explanation the person still didn't "get it." So it ended, and everyone went away with the same opinions. So instead of learning to get along better, things remain as they are. And I wonder where we go from here, when education did nothing.

There will always be a small group or an individual that doesn't "get it." I wonder what their story is. I wonder why they feel the way they do.. is there something I don't "get."

But by this whole event, we are left, as I see it, with no one happy, except me for using my walker at the event rather than the wheelchair. Actually no one happy, really, is quite a number of people upset. People are mad. And in society, if we have this madness everywhere, it can lead to hate. Hopefully hate is just in extreme cases.

Then I head way off-track and think of driving - lots of mad drivers. That can lead to "road rage" which can be hate.

So can we move beyond this? Can we improve? We have to - hate is not a good thing. Somehow, people have to show a lot less hate. We have
to really demonstrate it. I think it's called forgiveness and love.


Tuesday, January 4, 2011

How Strong Women Pray

I met Bonnie St. John at our national diversity conference, where she was a featured speaker. The night prior to her speech, she came and talked with a small group of us at dinner. There she gave me some advice about how to think of my career, and we discussed where I work, which she was able to use for her presentation. She was so genuine, enthusiastic - a great person.

She spoke and was incredibly effective, not using any notes. We were told of her accomplishments - Harvard, Rhodes scholar, Parolympic skier, and more. I bought her most recent book, "Live Your Joy." But then I discovered she also wrote "How Strong Women Pray," so I bought that.

It's a book I didn't want to stop reading. In it, Bonnie interviews and tells the stories of a famous set of women and how they pray. They include Barbara Bush, a survivor of Rwandan atrocities, a college president, etc. Into their views on prayer she weaves her story of learning to pray. Her successes in life seem to be ways to block a past of incredible horror she experienced as a child (read the book!). She talks through how she finally recognized the block and uses prayer in her own life.

In reading, I found myself pulled into her story, but also the various ways that people pray - alone, as couples, in groups, etc. I thought of how I prayed, but I learned how I could "better" pray (if that makes sense). I was brought up on set prayers - like the Lord's Prayer. Later I prayed outside formal prayers - typical of many kids, I would pray to run a race well, to get a good grade on a test, etc. As an adult I seemed confused of the mixture between set prayers and other prayers. And the other prayers changed, because God wasn't the decider on me winning a race or getting a good grade on a test. I wasn't quite sure when to pray - it can be any time.

Near the end, Bonnie has a prayer group (I've never done this - it still seems a bit odd). When she leads, she does something a little differently - she asks 3 questions, so I've thought how I wouls answer those...

Tell a story about the power of prayer in your life.
Just diagnosed with MS at age 20, I went to get help from the leader of our small Episcopal church on campus. We sat in the basement of the chapel with his secretary. He lead the prayer. I don't remember the prayer. I do remember it being the first time I felt the presence of God. I knew MS was going to be tough, very tough, but through our prayer I knew God would always be with me.

How have my prayers changed over time?
As from above, they went from formal prayers to more informal prayers, they went from praying for specifics to praying for guidance, and giving thanks. They can be talking to God whenever I want. The other day I struggled to get up from a chair (this can be difficult). I wanted to pray "God, please help me get up from this chair," but changed it to "God, help me to believe that I can find a different way to get up from this chair, because the current way is NOT working." And I found a way.

What support would I like in my prayer life?
More time for prayer, for conversations with God, for times when I can just "be." Many people find those times when they are in nature and I have to agree.

So the book offers so much more - in a way it took me on my own prayer journey. I thought of obstacles in my life, how I used prayer, how I can use it. And the strength on Bonnie St. John to open her childhood makes her a much stronger woman than all of her other accomplishments.

Maybe I'll be lucky enough to meet her again one day. She lives her joy, and I should start that book next. I'm praying to find my joy again - it's a bit lost; it's painful; I'll struggle briefly. But the joy will return. I believe that.


Saturday, January 1, 2011

How we pray


Different for everyone...

Alone for me, in silence.

I think a lot while I pray.

I "talk" to God.

I give thanks.

I ask for help.

I don't ask for specific things (normally).

I ask for guidance.

I ask to be accompanied.

I ask that I might find clarity in so much.

I ask for the peace to know that God takes all I give and do not give, without me asking, and gives me grace.