Monday, November 29, 2010

Winging it

It is so true as I look back on my life - winging it is perhaps when I do best, or at least better. So there was Sunday at church when I hadn't practiced anything but the psalm and everything went better than usual. I had to "wing it," and it worked.

Random decision the day before to just go to a track and walk once around - a 400M - but I made it around - incredibly slowly.

Whenever there's pressure I won't do as well.

In high school, there was a piano concerto competition where I competed - at a more elite level so no chance of winning. I usually didn't perform my best in front of audiences. But there I had no shot. My mom actually taped it so I can now listen. This girl who could come across as timid, or lose focus in a piece - this wasn't the same girl. It was beautiful (Mozart - my favorite) and it's almost as if the accompanyist, my teacher, was thrown offguard that I was on top of this thing. You can almost hear "uh oh, she's serious!" I didn't win - as I said, that was impossible. But I "winged it" - why not just throw my best out there and take a risk? When I did an easier competition where I should have won, I lost all focus.

Same concept with the flute. In 11th grade I practiced like never before - but nothing was sounding like I wanted, and I didn't make all-state. Fast forward to senior year - forget the practice - wing it - and I made all-state.

And there's athletics. Our team was great when we won state cross country. Perhaps it was because we weren't supposed to win and there was no pressure - we were just "winging it." The next year - when "no one can touch them," we lost. Too much pressure.

Individually, my best race was always the Bolder Boulder - love that race. All pressure was off, the track season was done... I just ran, and I ran fast. Definite "winging it."

As I move forward with my career, I notice the presentations I used to memorize - well, there just isn't time. I have to wing these things. And they are way better - especially the disability ones - because they come from the heart, and I don't have time to get nervous. I just go. I love that.

I haven't ever "winged it" in skiing - I am always overthinking. So perhaps that should be the goal for this year - "wing it." But if I make it a goal, it won't happen. So I think I'll try to approach this ski season without goals. That's difficult for me. I wonder what will happen. Someday when I'm not paying any attention, the fear will go away and I'll really ski, on my own.


Thursday, November 25, 2010

Giving Thanks

Thanks for...

God being with me on the big journey of life, and so many little journeys along the way.

Family and friends - all their support.

The gift of Lori.

The gift of being stubborn (most of the time).

Having more than enough, always, even when I don't think so.


Not giving up, even when I almost did. God's presence there.

People who "found" me, believed in me and still do, and showed me I could still be Beth, MS and all, even when I do not believe.

Being able to smile when I really want to cry.

Being able to cry when I really wish I felt like smiling.

All the people who I love but whose time on earth has ended.

God being with me, reaching to me in times of most trouble and in times of most joy.

And I am thankful for times of




Tuesday, November 23, 2010

Jobs and Houses

It's very interesting, really. Consider 2 groups, and there is a great deal of intersection between the 2.

Group 1: people who are elibible for a home and work with Habitat for Humanity.
Group 2: people with disabilities who are just entering the workforce and work with ???

Can you take a person in group 1, give them a house, and say, "Here you go! Now that you have this, we have support to help you move forward. But here's your house - congrats!"

Can you take a person in group 2, give them a job and say, "Here you go! Now that you have this, we have support to help you move forward. But here's your job. And you still have your benefits - no worries - congrats!"

It really doesn't sound like this is going to work out very well. What could go wrong? Neither group knows the resources, so they may be starting with no support - they're set to fail.

Group 1 - Habitat for Humanity has a great program - I thought they just gave houses until recently. But not at all. People go through 16 weeks, 2.5 hours a week, to get ready to make the transition to that house. In those weeks, it's intense. What will help them be successful? Where will they struggle? What new resources do they need? What supports do they need?

Group 2: Today I was in a group talking about this group. The first and foremost thing is benefits. But then we seemed to skip to getting them a job... WAIT! Hold on - that's like just giving the house to someone. Are they ready? I'm thinking maybe, but many times, no. Giving resources after they get the job could create confusion.

I think of myself a bit here. I have a job. I am limited by MS. But I'm not just starting out - I've developed resources. I am used to getting up 45-60 minutes before everyone else in order to get ready. I know that for best energy during the day, I set out clothes the night before, because getting clothes takes energy. I know at work where I want to park. I know how much I need to walk at work, and that if I don't walk, life will be hell that evening because I will have leg spasms. I know I may be exhausted when I get home (though this is not as bad on Ampyra), that I can pick up my daughter and they will bring her out to the car because we have developed a system. I know that on many days, I may not have energy to cook dinner, and we'll choose the best drivethrough so I don't have to use energy. Energy is a big thing - as I go through each day, I know what I have to do and I am constantly working through things in my mind, calculating if I want to do x, then I must do y. And to a large degree, this is done on auto-pilot because it has gradually become my life. I haven't been thrown into it.

Back to group 2: before getting a job, are they ready? Do they have childcare, transportation, food, etc. Have they thought about when they are going to shop with a job, given less time and less energy?

It's not to discourage group 2. It's to say look at the successful model for group 1. And to not give the same type of thing to group 1 may be setting them up to fail. Maybe they don't need 16 weeks of 2.5 hours a week. But if I were thrown into the job world without easing into everything like I was, I would be lost.

So we address benefits. Then we lay a foundation. Then comes the first job. And then we must also recognize that some people want to advance. That's often forgotten. In the door - isn't that enough? The person has a cube and a job. It's not enough? No, definitely not enough. Even with daily, hourly, by the minute struggles, advancement may be important. And then, perhaps it's not about the pay - it may be about respect.

I hope people learned about laying a foundation today. I think it's obvious. I'm not sure others quite "get it," just like many don't "get" why getting in the door is sometimes not enough.


Thursday, November 18, 2010

The recurring running dream

Ever since I could no longer run, I've had a recurring running dream. I don't have it often, but when I do have it, the dream is pretty much the same. It's very odd but very real, and I think I always remember it the next day.

It starts with me driving alone to a race, and I'm late for the race. I arrive at the race and everyone has already started. In fact, I'm so late that no one is really anywhere.

Somehow I start the race (in the dream, I skip starting and go to the middle of the race). Many of the markers telling me where to go have been picked up, and the fans are long gone. I'm on a golf course or going through a city - the location changes. But mid-race I always am lost, not knowing whether to turn right or left - not knowing where to go. And so I ask someone and they guess and the guess is usually wrong.

Somehow I also finish the race (although the actual finish is not part of the dream). Then I am with someone, looking at my time, using my time to see what place I got. And video cameras look to see whether I made it through all the checkpoints.

Then the dream ends. I wake up. I don't know how I did. I didn't see anyone I know. Somehow I completed the race although the start and end aren't a part of it.

Dreams seem, mostly, pretty meaningless, or I can map a dream back to something that happened that day, and concepts of a dream are interweaved.

So, in my dreams, I still run and it's effortless.

I'll probably never figure out the connection of this dream (like I do the others) of things that have happened that day which made the dream occur again.

But now - I have my own races (see previous post). There's somewhat of a start and end. In a sense I get lost because I don't know how far I will go that day, and whether I'll consider it "good enough" for me to win. I'm alone; sometimes I time myself. Then I show others my time. Of course, there's no one to compare it to.

But perhaps a part of the dream is that - comparisons maybe aren't what's important. Perhaps the start and finish aren't important. Perhaps the fact of just doing a race, when everyone is gone and it doesn't really matter except to me - perhaps there is something there.

Or perhaps it's a random dream that I'll continue to have and I'll never know why or what it means, if anything.

But, through this recurring dream, I will continue to run.


Monday, November 15, 2010

The invisible line

Each "race" gets longer.

Most "races" I finish.

Today there was an invisible ribbon at the end.

There are co-workers cheering me on.

"What's the goal today?"

Quietly I broke that ribbon.

I walked, and walked, and walked.

And I won.

It's my own defined race.

No big crowds at the end.

None are needed.

Winning today meant doing something that was impossible just 4 months ago.

And I suppose there will be tears of joy when no one is looking.

And somehow, out of someplace, I feel...


Saturday, November 13, 2010

Bridges out of poverty

The video that ended the day was an eye opener, even after a day of learning about poverty.

7 hours on poverty - which will now be targeted for Habitat for Humanity - a great cause. But today I got to learn.

Generational vs situational poverty
Relationships as key
Hidden messages in how people in different classes talk

Getting out of generational poverty is very difficult, and in getting out, one may alienate themselves from family.

We sat, listened, and did exercises all day. We had "a ha!" moments where it makes more sense.

We ended by assessing the family in the last video - heartbreaking. A mom walks 10.5 miles each way from her trailor to work at Burger King because her car needs to be fixed. She walks through pouring rain as cars drive by her. Her son seems to have potential, but how will he get out of this, this that is the fault of no one, but a place where everyone is stuck. To get out, much is needed. Most think by providing financial assistance and perhaps food, poverty can stop. But there is so much more needed - a strong support system that is there for the long haul - people who will provide social support for the long run.

Today, another group of us learned this. Perhaps we can start to provide more support.


Sunday, November 7, 2010

Kids at church

I keep thinking about what I think of kids at church, how they are part of worship, etc. It depends partly on the "church" (congregation, leadership, service, etc. - which isn't really "church" but seems the best word to use here). But from my standpoint...

I don't recall exactly what we were and weren't allowed to do, when we no longer went to the nursery, and when we actively participated in all of the church servicce. I do remember being a bit older than my 7 year old, and participating except during the sermon at which point each of the 3 of us got little pieces of paper and we colored on those.

I know now that I used to sit where there are seats outside our sanctuary, with our daughter, when she was under age 5 or so, because if she was really loud, I couldn't pick her up and carry her out - that darn MS! I was a bit jealous of parents who could just "throw" their loud kid over their shoulder, and exit for a bit. Out there, I felt like an outsider in a way, and I'm not recalling a regular nursery setup.

Then she grew old enough to not throw those fits, so we got to sit with everyone else! She would take in dolls, toys, books, etc. And for the most part she was (and is) quiet with these. I don't know what I would be like if I didn't have MS. I do know that with MS, the way to get inside the sanctuary with her was via her toys. If I made her sit next to me and not move and just sit there... well, I think she would have thrown a fit and we would have been outside the sanctuary again. For those people who CAN get their kids to nicely sit without toys and behave, I think they are somewhat lucky.

As Lori gets older, I realize that although she is playing with dolls, she has also been absorbing parts of the service. Sometimes she wants to sit and color, but I know she is listening to the sermon ("you mean the part where the pastor talks about boring stuff?") because she will make comments (which don't make me think she finds it all boring). Sometimes she will sit and listen. Sometimes she will try to follow along with the Bulletin - it depends on the day. And (aside from a couple times) I think this is ok.

Why? Lori has a beautiful creative side; she has a spark to her; she has a deeply empathetic side; she's smart, musical, and artistic. I get to say these things - I'm her mom. I don't want to "squash" any of these or make her hate going to church by forcing her to sit the same way each Sunday. It's fine if other parents want to have their kids sit nicely, and probably at a certain age that should be done - but perhaps it will come naturally (I hope so). But I want to see Lori's creativity continue to flourish; I want to see her spark remain there.

As I said, I don't know what I would think without MS. I think MS somehow made me this way - I don't have the energy to spend my time disciplining her, and I think disciplining her would cut that creativity and spark that is beautiful (mostly) to me.

Yes, there are times when it might be too much - maybe she is too loud - and then I can set boundaries.

I suppose this is also how times have changed - other parents without MS seem to do the same things I do.

We can introduce tools to "help" kids be more engaged in church. Some Sundays, Lori will utilize these. Other Sundays, I'll still let her play, which she seems to do less as she gets older. Today she was playing when the choir started to sing "All Things Bright and Beautiful." She popped right up, said "I know this piece!" (yes, Mom has played it in the car a bunch), and listened. Then back to playing.

Earlier this week, I was taking Nemo (my name for my wheelchair) out of the car. Next to my car, out of my earshot, but not out of hers, 2 girls were talking about me. They assumed I had been in an accident. They said something to the effect of I would have been better off dying than having to use a wheelchair. Lori heard this. Ouch. What does this have to do with behavior in church? Well, I think she learns things that help her with this kind of stuff, even in playing. Empathetic Lori.

It gets to what is really important, I think - sit still and "listen," or something else? I'll go with the "something else." I think Lori will be fine, and I think she will continue to learn.


Thursday, November 4, 2010


‎"Awareness requires a rupture with the world we take for granted; then old categories of experience are called into question and revised."Shoshana Zuboff (from Sojo Verse and Voice)

MS can take things away from a person slowly, so they may not even notice the small things. They notice the big things...
- can't walk as far
- foot drag
- need assistance walking
- use a wheelchair to regain freedom to go places
those "old categories of experience."

And so I thought I noticed everything I took for granted.

But I didn't notice everything at all - in fact I missed a lot, so now I can call them, the old noticeable, into question and revise them.

Now I'm more keenly aware of the smaller things I took for granted that for now, I have back...
- tap my foot
- lift my leg
- balance sitting
- stand by myself for a bit
- closing my eyes while sitting and holding hands
- sitting on the edge of my wheelchair and reaching my arms to the sky
- using both hands at the same time to wash my hair in the morning
- on my back, sitting up without having to roll on my stomach

It's like I'm being shown "these are the things you didn't realize you missed," where life was ruptured, like
- how many muscles are used to stand (stomach and back)
- multiple muscles used to lift a foot
- walking - so much to consider - bigger steps are more effective, while pushing feet into the ground while kicking with each step while lifting up with each step while also trying to stand straighter - I never thought of all these things involved in walking.

I can imagine getting up and walking across the kitchen without support, but I can't do it. The imagination of it is somehow freeing.

Mostly these things are invisible to others,
but I learn more of what not to take for granted.

And despite the horrible insomnia and off and on nausea, becoming more keenly aware seems to make life more amazingly beautiful.

And I thank God for being with me on so many journeys, including this one, a much different one than the usual MS journeys where God is there in a different way.

‎"Awareness requires a rupture with the world we take for granted; then old categories of experience are called into question and revised."