The "rules" according to Beth

The most common question I get when doing any training on disability awareness is how/when/where it's appropriate to ask someone if they would like help. I actually don't think I've done a training where this hasn't been asked. Friends ask me too. So, apparently everyone is unsure. And people with disabilities, or at least me, are not good about asking for help because then we're afraid we'd be perceived as weak (see a previous post on this).

The hard part is that there is no "right" answer because everyone is different. But here's what I think.

Anyone can always ask me if I would like help, just like anyone can ask anyone else if they would like help for whatever reason. My mom and I have frequently discussed HOW to ask. I think if a person says, "Would you like any help?" then that's fine. And after that is when things get tricky.

If the person says "no," then generally they want to continue and not be asked, "are you sure?" and other follow-up questions. For me, that's because, if I'm putting my wheelchair together and say "no thank you," then additional questions are throwing off my routine and creating frustration.

I think I understand why people ask follow-up "are you sure?" questions. My mom was born and raised in Minnesota. If you go to her house for dinner and she asks you if you would like seconds, "no" just doesn't do it. The thing to do is for her to ask "are you sure?" and then if you say "no" she may give you alternatives, or tell you what's for dessert! So follow-ups to "no" are common for many things, but it doesn't work, generally, in the world of people assembling wheelchairs and doing other adaptive things.

Then if someone does say "yes" to helping, it gets tricky again. People want to help (my mom will bring you all the food you want!). But the person who wants help generally knows what that help is. So, they want help, but if possible, let them direct you. My wheelchair has to go in my car so that I can get it out again. If people grab things without asking, well, first I could be leaning on the part, lose my balance, and hit the ground. But if a person lets me tell them what to do, things will go better. It does sound selfish, but disability is tricky - well-intentioned help can go wrong and no one wants that.

Today I went to Target. A woman was next to me in the store and said "you should try one of those power cart things." She somewhat laughed, but it was that "I'm really uncomfortable and don't know what to say" laugh. That has nothing to do with helping, but fast forward to when I was leaving. The parking lot was snowy - slip and slide. As I was getting my trunk open, 2 guys asked me if they could help. I've decided that's ok in snow and ice - I give up being stubborn and my shoulder thanks me because in the snow, I'd be using it more to help with balance. I said, "sure." And it was perfect. They just stood there, and I said "Could you..." and it was somewhat of a team effort. It was awesome.

I said everyone is different. A friend of mine wants people to wait a bit to see if she is struggling before asking her if she needs help. Another friend says only offer to help if you feel comfortable asking. I say the follow-up "are you sure?" questions are really hard. So I can give my opinion, but like everything else, we are all different.

Today, I wasn't even up yet, so I wasn't struggling, but I knew I would. I used to hesitate accepting help more before I yanked my shoulder, so I have learned, and there are still times I should accept help when I don't.

I struggle with ending this post because so much could be said about the woman in the store and other things that aren't quite related. So I will end it here, with the example of what happened today, where 2 people asked nicely if I needed help and it all worked. And then we all wished each other a happy new year. Ask all you want (once per "activity"). You don't know when someone will say no or yes, but respect it. If someone snaps "NO!" there may be a reason. But please keep asking. I wish I were the one who could ask. But since I'm not, thank you to all the people who ask, anytime you ask, whether I say yes or no. And thanks to those who help.

And with all that said, as the 2 guys said, happy new year. Let's all help each other however we can.

Peace.

Resolutions

I used to make the new year's resolutions, but they were always so impossible, so I stopped. Now I'm thinking, instead of impossible things that are checklist types of things, what about concepts? But the first one is a checklist thing - and it somehow seems impossible. But here they are - have to document them somewhere...

1) Finish my Masters degree.

2) Find more time to pray and let God in.

3) Keep trying to be as strong as I can be, physically.

That's it. It seems so simple, but it's plenty.

Peace.

Nothing is the same

Today I showed up at physical therapy. My therapist took one look at me and asked "are you tired?" It WAS 5:30, but...

Backtrack 3 days...

"Please God, don't let this happen to me again. I can't go through this again. I don't think I can do it." Tears.

Backtrack about a week. "Hi Beth. We're switching your medicine. You see, the drug company's patent is about to expire, so they have created basically a new version of what you have. We're switching everyone to that until the generic becomes available, and then we can switch you back."

Well, if it's the same thing, then I guess it's fine. This medicine helps with fatigue. Without it, I am super tired. Once I went off this medicine for a few days. And then, Beth went away and was replaced by someone who was extremely depressed. It took months for Beth to fully return.

Nothing is the same. Everything, to some degree, is different.

The dosing for the new medicine is different. This past weekend I started the new medicine. And it's not the same, because, nothing is the same.

Today I was told to increase the dose.

I hope that works.

I haven't felt the same. I've felt tired. Beth is still here, but it's a somewhat subdued Beth. Somewhat subdued Beth isn't really Beth. This Beth likes to just sit and look at the walls. But it IS still Beth, because this post is being written, as opposed to me being off in a corner, crying.

I know God can't change this, and that God is with me through this. And everything will be ok.

And yet, I think I'll still ask God tonight for taking the whole pill to work.

I guess I'm being difficult again (see earlier post). But, as per earlier post, define difficult. People need to listen and respond, rather than pass something along to someone else. This will all work out. There will be fewer tears. I'll be happy soon.

And God will be right here with me along the way.

Peace.

Favorite Carols, resolving, and not (resolving)

Two part blog...


Part 1:

It's always been clear to me what my favorite carol is... Once in Royal David's City, and I've been contemplating why this is. Here's the first verse (part of it is that I like the lyrics):

Once in royal David's city
stood a lowly cattle shed
where a mother laid her baby
in a manger for his bed.
Mary was that mother mild.
Jesus Christ her little child.

A carol can be defined as a joyful religious song celebrating the birth of Jesus Christ. Now if you don't know this carol, you'll have to trust what I'm saying. My favorite parts of this carol, and why I like it, is how it resolves (defined as "settles") at different points. It resolves in pitch, in the first line, from "in" to "royal," and in the second line from "a" to "lowly." It's a musical thing - when I break it down, I might wonder where this song is going and then it resolves from the second to the third syllable in each line. And in a sense, as we move from Advent to Christmas, we have resolution, or settling. We have been waiting, and Christ is born. And it's truly beautiful.


Part 2:

I thought everyone had a favorite carol, so I started taking a survey and I've been wrong - many people like many carols, for whatever reason. When I look at most carols, they resolve. And this led me to this strange thought that in life, or in death, there is not always resolution.

Perhaps this thought is because of the unexpected, sudden passing of my aunt. I was wondering if she had a favorite hymn but she couldn't be a part of my poll. So much of her passing is this feeling of things not being resolved - she did "go out on top," but ??? As our family went through Christmas, things were a bit odd. I wouldn't normally think "what was Aunt Dot's favorite hymn?" as I considered mine. I wouldn't have strange thoughts like that I'll never receive her Christmas card, although they were probably done. I probably wouldn't bring her into as many thoughts as I have had. And because of the unexpected nature of the whole thing, my thoughts wouldn't be so much of the kind of "what if?" or "I wonder." Christmas seems to "resolve" so much and I've been in this strange sense of inconclusiveness.

Part 1 resolves and part 2 has not, although over time it will. Perhaps in a strange way, the words seem to lack of resolution the following carol. Resolution seems questioned.

I wonder as I wander out under the sky,
How Jesus the Savior did come for to die.
For poor on'ry people like you and like I...
I wonder as I wander out under the sky.

I'm also wondering, as I wander a bit.

The doggy in the window

In Advent I always think how I should "pause" and reflect more, just take that time. I'm doing that - it's for a somewhat different reason.

She went out on top - my aunt. She loved life and was busy all the time, loving everything she did, always thinking of others. She'd always tell me she loved my Christmas letter, and couldn't wait to get it each year. But what wasn't supposed to happen did happen, and although her parents made it to 97 and 99, she ended her baptismal journey suddenly, without any warning, at 73. I wish I wasn't so late with the Christmas letter this year.

I struggle with not understanding this at all - why so suddenly? I don't get it? Why at the top of her game? Perhaps that is best in this case - we can cherish the memories, too many to name, but here are a few...

Memories
* Lori as a baby, and my aunt singing "how much is that doggy in the window?" to rock her to sleep. I'll never forget that.

*The gift of tickets to Lorie Line in Minnesota for my birthday - and now I continue going to Lorie Line concerts. My last email to her was the picture of my Lori sitting next to Lorie Line onstage.

* Minnesota - when I lived there she was 2 hours away, but she checked on little Beth, just out of college. "Bethieeeeeeeeeee, this is your Auntie Dot." OK, really, she could have stopped at Bethieeeeee. No one else said my name the same way and never will.

* Fall leaf trips in Minnesota. She would pick me up when I lived there and we would spend the day looking at the beautiful changing colors on the Mississippi. And she would say "Ohhhhhhhhhhhh...." with the Minnesotan accent to the max, so you may only understand "Ohhhhhhh..." if you've heard the accent.

* "Beth, I was on that medicine and you are like me. You need to stop taking it." She was right. We were similar.

* "Beth, you should become a member of this church. You keep coming back here." Right again.

* Random articles in the mail that she would send for me on MS.

* Memories with cousins and my mom, her sister. Get the sisters from Minnesota together with "Ohhhhhhhh..." and it can be quite comical.

So, memories. There are sad times. There are tears. This was unexpected. And so, during Advent, I pause with sadness but also memories.

Peace.

"Difficult"

We were discussing service and maybe how to incorporate a "difficult" patient into this. I said I thought we wanted to be careful with the word "difficult." Well... someone who chats a lot was given as an example. So I continued to think. This will end up as me telling my story to the few people who read my blog.

Difficult... interesting... from whose perspective. If I am difficult have you considered why - have you flipped the coin? I'm as much to blame for this - I may consider someone difficult.

Anyway, my story as the difficult patient...

This woman just had shoulder surgery. She has MS. We can't move her because her legs are out of control. She's difficult. I guess we can put a moveable toilet by her bed. Maybe then she won't be as difficult to move.

I'm in the hospital after shoulder surgery. Hasn't anyone been trained in how to move someone who doesn't have good use of their legs? Isn't there a procedure for moving people like me? Something is wrong, yes, but I've been knocked out and I don't get it.

Physical therapists arrive. Difficult patient can't stand. Her legs just shake. She has MS - the best place for her is a nursing home. She won't do that. Come on - she has MS - doesn't she "get it?"

Oh, I'm coming out of this now. I don't think I've received any of my normal medicines and so my legs are shaking. Where is a doctor? These people who don't know me and gave me 2 minutes want me in a nursing home due to MS. No way - something else is happening.

(that night) This woman wants medicine but it's not what her prescription says so she can't have it. Won't she just go to sleep? Why won't she just use a bedpan? She is difficult.

Oh, I'm getting it. I haven't been standing so nothing is working and I don't think I've been getting my meds. Why won't they give them to me? My legs are spasming. I can't sleep without my meds.

(next day - difficult patient is transferred) OK, we have a new lady here and she is difficult. She doesn't want to be here. She wants medicine and we can't give it - it's not what her prescription says. It's 1am - can't she go to sleep?

This is going to be a long night. I haven't had meds. They gave me 2 out of 10. The doctor said they could give me 2 more. Woo hoo - we are now at 4 out of 10. Look at my leg - if it were long enough, it would jump to the ceiling. I am in hell, clearly. There is no escape.

(2 days later) What?!! The difficult patient escaped, came back, and no one noticed! She must be telling a lie - she really thought she could leave? Now she wants to go home? We're going to have a meeting to discuss her!

OK, I've had it - I'm going home. I can do what I need to do. I know this because I left and found out I'm able to do things. I didn't know I shouldn't leave. I am out of here - then no one can tell me which rules I'm unknowingly breaking and I can take my meds as I know how to take them, and I can work things out.

The end.

Clearly the difficult patient wrote this. There are other "sides." But has anyone asked what she thinks? No, not until the end. Who learned what from this?

Define difficult.

Do you see what I see?

A familiar tune went through my mind last week... at the school bookfair...


"Do you see what I see?"
I see stares from children
What do they see?
They see, I think, that I am different.
I want them to talk to me before their parents snatch them away.
I want them to see it's ok,
the wheelchair... or the walker... or whatever...

"Do you hear what I hear?"
I hear whispers. I hear "don't stare."
What do they hear?
They hear, I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to hear it's ok,
the wheelchair... or the walker... or whatever...

"Do you know what I know?"
I know I'm at the bookfair, just like them.
What do they know?
They "know," I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to know it's ok, it's good,
the wheelchair... or the walker... or whatever...

Because you/I see... hear.. know...

"Said the king to the people ev'rywhere:
Listen to what I say!
Pray for peace, people ev'rywhere,
Listen to what I say!
The Child, the Child
Sleeping in the night.
He will bring us goodness and light.
He will bring us goodness and light."

And all the other stuff is, really, minor.
We are all children of God.

Peace.

One

One final finished.

One class finished.

One more Spring class.

One more Summer class.

One Capstone Project.

One Masters degree within reach.

One person says "You know Beth, not everyone even gets a Masters degree." True. But in my family, everyone gets more. But my One would be the impossible dream.

One God, or three in One.

One Advent.

One Savior.

It seems so simple, yet is so complex.

One.

So far, yet so close.

Peace.

The boiling point

Someone once gave a talk on why people may appear to "snap" and the person who is the recipient of the "snap' may blame it solely on ethnicity, race, disability, etc - really, any stereotype - put the blame there. I thought, yes, but why?

Think of a pot of water set on the stove to boil. It gets hotter and hotter and little bubbles start and then "Snap!" You have the full boil. So for me, say, with a disability, it's not one frustration that makes me snap. It's a whole series of little things that continue to add until I can't take it, and unfortunately, someone may receive a big dose of how I feel.

It was my birthday on Friday, which I actually celebrated by skiing the previous day and will celebrate tonight by going to a concert. But the birthday started with me running a bit late for work. And the series of little things happened. I forgot my medicine, but that's ok because I could go and work from home in the afternoon. I took my main walking medicine, which sometimes makes me feel like not eating, and I felt really awful that day - no food for me.

I got to work and all but 1 of the 20 accessible spots were taken. At least there was one, so I got out and started to take my wheelchair apart. A (nice) car zoomed in next to me - into the area of those lines put between accessible spots. A lady quickly got out of her car, in high heels, came back, and said happily, "Can I help you?" No, but thanks for asking. "I'm going inside for just a minute and I'm in not hurry, so it's no problem." (happy voice) She doesn't have a tag on her car, there is other parking, she's not in a hurry, so I nicely say, "you know, we really don't like when people park on those lines." She was receptive - the happy lady moved her car and I could open my door to get my bags. But the water was getting a bit hotter.

After lunch I headed home but my car needed gas. I decided to be "helpable." I mean, gas stations have all these signs that they will help people who have trouble or cannot pump gas, and the last time I tried to pump gas, I decided I could probably hurt myself. Gas station #1 said beep 2 times. That did nothing, but the phone # was on the door so I called. "No, sorry, can't help you." Gas stations 2 and 3 - well, I'll just say no one was paying attention and there was no phone # listed. Gas station #4 - signaled the guy inside - he wanted to help, even though he was the only one working. He found a way to get it done - now I'm further from home because I know if I go further north, I'm more likely to get help.

I drive home, big construction me slows down. I have a meeting on the phone at 2 that I think I may miss - didn't plan on 4 gas stations, but I plan the sequence... get inside, get medicine, find phone, computer, etc. I make the call.

Next: get Lori to piano and dance - little frustrations. The pot boils over but at least I recognize it and just don't talk. Lori wants to know why I'm not talking. I can't explain it's because I'm done.

I get dinner and bring it into her dance dress rehearsal. There's salad and carrot raisin salad, but no fork. And I'm finally hungry after eating almost nothing all day. I can't take this anymore so who knew salad and carrot raisin salad could be eaten with fingers?

Note that throughout this day God is taking quite a beating - it's amazing that there is forgiveness, because I'm saying "God, you have GOT to be kidding me!" And then throughout the gas thing, I'm almost in tears asking God why this is so hard and why no one is helping and why no one cares. It's not true that no one cares, but it sure feels like it. And God, really, could you give me a break somewhere here? I have just had it.

The break comes when Lori comes out of dance. "Happy birthday, Mommy!" We go home. She has been working on a "book" about people with disabilities. It's very sensitive. From her vantage point, she communicates so many of my feelings.

"Mommy, what can I be when I grow up?"

"I don't know, but I hope you can use your creativity, the love you have for music, and your happiness. I think you can do something great."

She really can - I think she turned off the stove so the water stopped boiling.

Peace.

Drop it at the door

I thought of titling this "Hitting the slopes," as it's about my first day back skiing (pre-bday celebration, because today, my bday, was packed with other stuff). But then I thought it's not really about skiing. I'll explain.

As I awoke that morning, I thought did I really want to do this? I was comfortable in bed at 5am. But I got up, and out I went. Up the mountain I drove and as I exited the Eisenhower tunnel (gateway to the mountains for me), the beauty of the mountains was stunning. Clouds of pink slightly covered mountains. Yes, this was going to be worth it.

Perhaps the best moment of the day was entering the office in Breckenridge, the BOEC office - where people who go to do adaptive skiing. And it seemed almost everyone was there that day. All my friends - go through those doors and leave disability somewhere else. The BOEC is where to go to realize abilities. It's where to go to get infectious positive vibes. Smile - everyone else is. How are you How was your summer? Everyone is equal - disability or not. It is hard to explain - these are some of my favorite people. So the day was not mostly about skiing - it was about people. I wasn't expecting that.

My instructor, Charlie, he's one who found me when I struggled to see what this former athlete was to do with MS. Charlie gave me a ski lesson years ago. Then I had Lori and a few years later, returned to ski and was put with Charlie again. Charlie got me skiing, got the athlete back, suggested I get into handcycling. It's all about the people. For this, I am grateful.

The skiing itself yesterday was not impressive. I started ok, but mid-morning I was back to an old habit which only serves to hurt my shoulder. By lunchtime I was discouraged. Back to the office where the focus was positive. But I was discouraged. Enter Michael. He gave me a ski lesson last year. What he sees in me is different. What he clearly sees is this person who, no matter what, will beat herself up. Nothing is ever good enough. He told me I need to focus on being positive about myself, rather than just beating myself up. He said, "You should get up every day and think something positive about yourself." He's right. The infectious positive attitude is everywhere in that office and he has it too, but I'll fight it.

Back in the afternoon, things were ok - not great, but ok. And it is the first day of ski season, so not everything can be perfect. On the last run I was getting out of control. I was trying to crash because things were so out of control. I was headed to the right but couldn't stop and couldn't crash. And all at once, I heard, "Beth! Look downhill!" In a split second I did just that. Snow flew in my face. I turned left and came to a stop. Whew - that was a close call. I did it! Apparently it looked cool, like I knew what I was doing - carving the slopes fast, in control. The beauty of out of control, but it was corrected in an instant.

And so I will go back. I'll try to improve at skiing. I'll try to find some positive thoughts. Mainly, the friendship and sense of community is key. Drop it at the door. Smile. Everything is possible.

Peace.

A look back, a look ahead: Advent

It's been 3 years since...
- medication "oops"
- resulting severe depression
- pulled out by church, somehow by Advent

The memories of depression slowly fade, though I'll never forget the pain. And each year the memories strangely return on a day like today.

And so we're at Advent again. We're waiting, anticipating, hoping.

And today, I'm...
- stressed, but ok
- uncertain, but holding onto faith that things will be ok
- weak physically, but then again, much stronger

And the hope that brought me back 3 years ago remains today in a different way,

because as I wait, anticipate, and hope,

occasionally I feel

Peace.

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.

Peace.

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.

Ampyra.

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

Hope

and

Peace.

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.

Peace.

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.

Peace.

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...

Peace.

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.

Peace.

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.

Peace.

Awareness

‎"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."

Peace.

Bonnie and aiming higher

After 4 years of not flying, I flew to our company's national diversity conference this week. There were many highlights, but perhaps the best was meeting Bonnie St. John, talking with her, and then seeing her give a remarkable presentation.

In meeting her, it felt like meeting someone with whom I had gone to college, and it is difficult to explain why that is because we went to different schools.

In talking with her, she gave me suggestions on how to approach some difficult things - but they were different approaches, perhaps because of her background and life story.

Then she gave her presentation where the theme was "Aim Higher." Aim higher? That's different. I think I've encountered, either by just me, from people I know, or strangers, the following approaches given disability:
1. Aim to do something.
2. Aim (?).
3. Aim, but be cautious and don't expect anything.
4. You may be aiming higher, but we think aiming is enough.
When I enconter something other than these, I'm shocked, so often I'm lost in questioning whether I should aim, aim higher, in what, how, and will I have support given #4. Perhaps I can aim higher.

Another part that hit me from her presentation was a comparison. On the right she put a "box" of disability. On the left she put a "box" of African-American + woman. And then she considered some different data. There's a chart with employer considerations regarding people with disabilities. Some include whether they are willing to hire a person with a disability, whether they think a person with a disability can do a job, and whether employers actually DO hire people with disabilities. When standing on the right, as a person with a disability, these are typical questions. But stand on the left. What if these questions were asked about African-American women - are employers willing to hire them, can they do the job, do employers actually hire them? If these questions WERE asked, and the answers were similar to the answers for people with disabilities, there would be a societal uproar. But with people with disabilities, the thought tendency is, well, it looks a bit better, let's keep watching it. NO! Let's aim higher!

Then there was this realization. Bonnie pointed out that people with disabilities do not tend to ask for help. Why is this the case? I've actually been wondering that lately - why do I always wait for people to ask me? I get it now. I do not ask because there is underlying fear that I will be perceived as weak or perhaps pitied, when I want to appear strong and invincible. I must be perceived that way. How else can I begin to aim higher? This won't change unless society changes perceptions, but I don't see that happening. Bonnie walked a block and a half on her prosthesis for a week at a training and tore up her skin. I do similar, though different things.

Bonnie received one bronze medal for an event requiring 2 runs. After the first run she was in first. But for the second round, the course was changed and everyone was falling. Bonnie fell at the end, losing first place and ending in third. The difference? Someone else got up faster. It's a bit like a race I did in high school where I wasn't supposed to win and was in first. I got beat in the end. Afterward my coach, Jean Ann, who ironically now has ALS (which she says sucks) while I have MS (which I say sucks, though not as badly), told me "you could have won that race, you know?" Yes, I knew. I didn't have to get up faster, but I lost it right in the end because in a split second I doubted myself. That made the difference.

So we, and I, were moved. I laughed hard, cried a bit, was enlightened, had some concerns confirmed.

The rest of the conference was good. But this brought me to a new place.

And so I move forward with the belief I can aim higher.

Peace.

... Pause ...

"Let us pray." And THAT is what I needed, right before being assisting minister at church today. That kind of Pause, to collect thoughts, to be "in the moment," distractions removed. I don't think I've been a part of that pre-service prayer in other times. ... Pause ...

The moment ... we joined hands ... we prayed ... I closed my eyes ... holding hands ... not losing balance (new) ... in that moment ... closing eyes, holding hands, holding steady ... God in that place ... Pause ...

It's aside from all this that life is chaotic. Recently, frustration - people do not understand - having a certificate, something official - it doesn't qualify someone to decide what is best for people who have disabilities. But clearly, many people think they are qualified to make decisions for us - which would be fine - if they asked us - especially when we repeatedly offer to give guidance. And it seems that most places I turn, there it is. There's a flyer with a guy going off a diving board, launching himself from a hospital wheelchair, doing a cannon ball. Clearly this wasn't shown to many people because launching off a diving board would be almost impossible; the guy has leg muscles (in people with wheelchairs, generally muscles have attrified); his legs are raised to do the happy cannon ball rather than down; and most people who are independent enough to launch off a diving board will have their own, "cool" wheelchair. This is just one example.

But I see the effort is there. The effort is usually there. The intent is almost always great. And you can tell which things have had input from those with disabilities and those without.

But back to Pausing...

Out on my deck this afternoon, the leaves have or are turning. They are beautiful. It's a gorgeous scene. My daughter is in the front raking leaves with the neighbor kids and throwing them in the air - laughing, smiling, no cares in the world.

... Pause ...

... Tears ...

This was not how things were supposed to be, I think. I'm not sure exactly what I mean. It's something with life. Bad day - insomnia, nausea --> not eating --> migraine.

But this is short-lived. Tomorrow I get to present with someone who is a minority in a different way than me, but she is part of the group with whom so many people with disabilities can relate. And we will discuss, and laugh, and get away to do a presentation.

And although today I have realized frustrations, I have also, finally, taken time to Pause, hand it to God.

... Pause ...

Peace.

Vacationing with MS and the new medicine

See previous entry for the Mt. Rushmore moment. That was the highlight of the trip.

We're just back from vacation... Mt. Rushmore area...

Vacation with MS, or I suppose for most people with disabilities, is this mixed bag of stuff. I go somewhere fun or beautiful (or both) and love it, but at the same time have to figure out the logistics of everything - every bathroom, every walk, every interaction, every place, everyone. It's tiring and can get annoying - with Ampyra, things seemed easier. I didn't fall. Of course everyone is figuring out this stuff, but I'm going to bet people with disabilities have a bit more work. I mean, do most people, when entering a bathroom, hope there isn't a huge toilet paper dispenser right above the bar that could cause them to fall, and when it does happen, have to figure out how to avoid falling?

I know no one but my family on vacations, just like everyone else on vacaion, and people can act differently around me depending on who they are and what their background (combo of being around others with disabilities and the society in which they live) is.

With Ampyra, things changed a bit this time. We used to have to stop for me to walk briefly to prevent leg cramps. Now we have to stop more frequently and I walk much further each time. I plan how far I'll go, then start, and then decide to double or triple it. And I'm bent, but I'm working on being straighter, even when completely hunched. This trip I found myself, rather than going on short walks out and back to the car, actually walking into restaurants, gas stations, our hotel. Once my husband nicely (so he thought) parked the car closer to a hotel entrance and I informed him that no, park it further, darn it! :) And we have to take walker and wheelchair everywhere so I can walk and wheel. When I chose to walk this time, I made it - some pretty far distances. I use strategies, so there's another difference. Who else thinks as they head to their car "Break it up - make it to that line, then the next line, then the next. I WILL make it. Bring hips forward. Long steps. Kick it. Don't lean." This is all going constantly through my head. It's part of why I can get mentally exhausted.

Rest stops - can I make it in with the walker? Rephrase: I'll make it both ways using the walker - it just may take awhile. People may ask if I need help. With the walker, people seem to have a more "sympathetic" tone - with the wheelchair, it seems the tone for some reason puts me more with everyone else. It's just odd.

Hotel rooms - always interesting. At home I have my way of doing everything and it has a kind of rhythm to it. Toss that out when staying somewhere else. How's the bathroom set up? Where are the bars? Where is the shower and how is it set up? Best place for towels? Wheelchair or walker? Beds - how high - if too high, must use the walker. If too low must use the wheelchair. Is the room long enough to do some walking? Can I use something to do exercises?

Therapy - where and when? Can I find a bar where I can practice standing? Bet I looked silly doing my balance exercises in my chair at numerous tourist sites. I probably looked like I was doing a praise God ritual, along with some kind of Yoga. What IS that lady doing?!! Why doesn'r she sit back in her chair?

So, thoughts while traveling. Next week I take a plane. I hate to fly - I think it's the lack of control. And then I'll have a new hotel and a whole new set of circumstances.

After that, I think I'll be happy to be home for awhile.

Peace.

Silent miracles

My husband says (at Mt. Rushmore)
"look at the eyes of the different presidents...
with the binoculars."

I look at them (the binoculars) strangely.
They're just sitting in my lap.
Why am I hesitating?
I pick them up and start to look.

They're not quite steady, but something is different.
What is it?
I try to steady them.

I realize suddenly that I'm using both hands to hold these things,
when I used to use one, which wasn't effective.
I used the other one on my chair for balance.
And then I gave up.

But now, I can see those eyes of the presidents.
I can hold the binoculars steadier.

Then I realize I am doing the same thing with my camera.
I am using both hands, without thought.

And so I take the binoculars again and refocus.
It's new, seeing these eyes.
I can see them, with more clarity.

And no one knows I'm having this profound experience,
which may seem trivial to some,
but is this remarkable blessing to me.

And so, maybe it's more profound
to be truly alone in this (these) moment(s)

when God is right there with me
holding me in a different sense
and showing me the truly remarkable simple actions

that at other moments in time
I took completely for granted.

Peace

October 14

"Looks like you must have had a virus, but everything looks ok, so it must have gone away."

The 4 MRIs of my brain were all normal.

Maybe it's in my head. But HOW can this be in my head?

I run, I lean, I start to fall.

Today - October 14 - the day my college running coach made a tape of me running, with the normal start to it, then me starting to lean.

Look docs - look what happens - she starts to bend over.

"Beth, you need to be prepared for not running competitively again."
What?!! But he was right - my college doc - the only one who had it right from the start... the only one who told me what was happening, because he knew.

"It can't be MS - no brain lesions, other symptoms are normal."

Tests, tests, tests.

And I remember October 14 - I think then I sensed it wasn't in my head.

So for fun, because it's about right, let's designate the cat's birthday as October 14, so we can smile. We can laugh until our stomachs hurt and we can't stop laughing.

Decorate the house. Bake a cake. Give special tuna to the cat.

In silence, pause to remember this day. "Benson Bowl." Kenyon College. 1992. 3 long years to diagnosis. Tough years, far from home, but filled with support. That's Kenyon.

Being held. Child of God.

Peace.

Standing up, falling down

Awhile ago she "sametimed me" (instant message) at work. It had been awhile, because I usually turn the sametime off - people see me on there and want to talk, and I can't get work done. It had also been awhile because we don't talk that frequently.

Hi and how are things? And I told her about Ampyridine and how awesome it is. I asked about her kids. That seemed about it. We're all busy. Back to work.

When was it that she sent me the message? I don't remember. But it wzs right around the time when I was "standing up" and she was "falling down."

Yesterday - "did you hear about her?" Well, no, I mean, she sent me a message and we talked a bit.

One Thursday - after not a lot of concern grew quickly to great concern -she learned - 4 spots on 1 lung, 3 on the other, and it had gone to her brain. She had never smoked. The following Tuesday - successful brain surgery. Now chemo and radiation.

Today I went to PT. I worked hard on standing. I am standing up.

She is "falling down."

But if anyone can get back up, it's her.

Another lesson to cherish each day, love one another each day, and embrace life.

Peace.

Hanging in mid-air

With the new medicine, I talked to someone and decided to go to physical therapy that specializes in neuro stuff. Last time I went for evaluation. Today I went and got worn out - it's s good thing.

There's a treadmill and then I'm put in a harness, attached to a contraption, and then lifted via the contraption. Then I attempt to walk, with the contraption holding me vertical. It's very strange. Then when I can't really do it, some therapy bands (think big rubber bands) are strung though the contraption and around my feet, or various legs muscles. The PT moves my right leg and I move my left, but I can't get the rhythm quite right so she tells me when to move the legs.

Then we work on standing in this contraption, so I am standing vertically. Then she tells me to tell her when I'm tired. Ha! Already tired. Pushing on.

Then I'm lowered off this thing and go to the therapy table, although for the next hour I feel a bit like I am floating. On the therapy table, we practice a lot of sitting stuff, again working on being vertical. Then there are legs exercises.

I feel like I've done a marathon but I've only been there an hour.

And then I go to the "real world," where there is too much to do with too little time.

But tomorrow a part of all this will come to an end. We will have our disability awareness dinner during this, the national disability employment month. I'll see old friends, meet new friends, and hope we got all the never-ending details right.

Then I'll start again Wednesday and revisit all the therapy ahead of me. Life is exciting and exhausting at the same time. Insomnia and nausea with Ampyra are no fun, but I keep going, going, going.

It's an exciting journey.

We used to run a route we called "Death Quest" (now a skateboard park) in training for cross-country. 3 minutes hard, 2 minutes rest - around a triangle where we climbed a hill, ran across a flat, up a bit more, then back down and around. At the flat part, our coach would stand and yell "MAINTAIN!!!" So now I'm maintaining. One more bump and then I get to glide down the hill.

I think I like this new version of "Death Quest." I do like this journey. I pause a bit to gather thoughts and connect with God.

And in the end, there is,

Peace.

The bookstore

"We all have those defining moments in our lives. Moments of great joy. Moments of unspeakable sadness and fear. We usually think we're alone. But if we look into the corners of our memories, we'll find them - those people who had faith in us. Those times when a grace beyond earthly understanding touches us. " (Byron Pitts)

I have used my wheelchair, for a few years now, almost everywhere except home, church, and Lori's dance class. At work I wheel into my cube area and then walk using a walker, 5-7 times a day, of various lengths. At church the distance isn't too far - if it's the evening I use my chair - and the people there are great and will ask me if I want a ride (which is when I sit and they pull the walker). Dance is a short distance and not worth loading and unloading my chair. Walking feels awesome - that's why I've always done it - though it looks like it's really hard.

I've been doing so well on Ampyra that I've tried a few tests. One test was to go to a work meeting in a different building. I used my walker there - some people had never seen me walk! Good experience.

Saturday Lori played a piano concert in a small bookstore in town. I decided to try experiment #2. That's where the quote comes into play. I was fearful - would this work? But I was also excited and joyful to think I could try this. And I did feel alone.

But I did it. One would think that doing that would result in great joy. Nope. See, these people hadn't seen Beth previously. And it didn't need to happen, but they seemed to flux between the pity mode and the "you're so inspiration mode," though most often, it was the pity mode. i was the person in the walker who looked like I really should be using a wheelchair. And I felt alone. I also felt like making a kind of public service announcement - "you should have seen me 2 months ago!"

So I'm in a bit of a strange place. There are invisible improvements that no one sees unless I demo how I can lift my foot. I stood up without holding onto anything, but I did that when only my husband and Lori were there, in front of our banister, in case I needed to grab it. Small things - yet big. But if I take it out in public... well... hard to explain... I don't feel like I've accomplished much.

I came home from the bookstore and Byron Pitts' book was staring at me from our bookshelf, as I was feeling like a failure. I opened it and found that passage. He was illiterate - I imagine many of his steps were invisible. He was ridiculed in college yet he had come so far.

And in that quote, I find so much. Great (invisble) joy. Unspeakable sadness and fear. Being alone.

But I know some awesome people who have faith in me, although no one knows what the end of all this will be. And I think, on Saturday, that was a time when a grace beyond earthly understanding touched me, pulled me through it, and brought me home.

And Lori - well, she did a great job on the piano. She always will, or I'll say that, because I'm her mom.

Peace.

Greetings

We, out in disability land, hate when people come up to us, and by way of introduction, ask why we use a wheelchair, or whatever.

But a friend noted our typical greetings to each other, after I sent him a message which began "How's your infection?"

It's true, really. It's quite common for me to wheel somewhere and be asked "what level are you?" as an introduction, from another wheelchair user. And for me that's ok - I think A Ha! Fooled you! I have MS.

I don't like going to MS functions, because here's how the intros go...
"How long have you had MS?" ... "Wow. You were young." Really? No duh! I did feel like the ONLY one back then. And then open my autobiography of MS and all the drugs I have tried.

What's best is to show up to ski or at a handcycling event. Then, for some reason, it doesn't seem "allowed." Then we're all out there to have fun.

And this year I'll miss the big handcycling ride. I'm actually letting my shoulder heal. It's finally feeling better. Drives me crazy to not be out there, but I'm working on my legs now and that's exhausting.

So another intro: "How's your shoulder?"

In a way, it's comical. But then, maybe annoying sometimes.

I guess we should just start with "How are you?" and see where that gets us.

"How's that new medicine?" It's great. But I'm working hard so I'm exhausted. I'd better end this post and go to bed.

Peace.

One little boy

He sits quietly and patiently,
waiting for his mom
who is absent
along with anyone else who could support him.

My husband notices him
and goes to talk to him at halftime,
which is when his mom arrives,
a half hour late and everyone has left.

She thinks my husband is someone else;
and he does know the boy, but from a different time.

The boy leaves with his mom, quietly.
It's been unclear why they come and go as they do,
with him always alone,
dropped off, picked up,
and often at the wrong time.

He’s wonderful and gifted.

I hope she knows this. I wish she could see this.

It is unclear why she and anyone else is never around.

I hope someone sees his gifts
and is able to cheer him on through his life,
because he is very special.

Broken synapses and Ampyra

Synapse: the point at which a nervous impulse travels from one neuron to another.

And that is what Ampyra works to correct. Potassium channels are blocked and signals flow through synapses which are defective. Blocking potassium channels allows this, somehow. Obviously I'm not a doctor.

Interesting to see what is corrected - what works and what does not work.

Left foot lifts.
Right foot begins to lift.
Walking faster and further.
Sitting straighter without hanging onto something for dear life.
Getting up legs work, muscles return ... little leg muscles can be seen.

But it's still MS - doing all this can be fatiguing.

A synapse is still blocked.
It's in my back.
It's why I was difficult to diagnose.

... (back a few years) ...
Pins and needles came in legs for 2 weeks when I'm 17, then they go away.
Repeat that one year later.

College - if I'm to run faster I must be thinner.

I'm thinner ... getting thinner ... I'm not eating enough.

But I'm getting slower. Something is wrong. I'm not thin enough.

It's something else (though I still think I could be thinner - thinner than 5'4" and 107 pounds!). My coach makes a tape of me running.
I start fine, then I begin to bend over from a bit above the waist.

This cannot be MS, according to doctors. Are you eating enough? (I lie)

This has to be something else... until the day I am diagnosed ... and then it isn't something else. And I am plenty thin.

There were and are 2 lesions on my spine. That's it.

With that, there's still a stubborn synapse that's broken. Things are getting better with Ampyra. But standing...

15 seconds without support.

I can only stand so long before the bend of my body collapses me.

I start again, trying to hold an upright position.

My body starts to bend.

I reach and am stabilized by a bar.

And I begin again.

15 more seconds.

Bending. Reaching. Stabilizing.

What causes this? God, what causes this? Do others experience this? I suspect it's different for everyone.

For me, I think it's 1 main broken synapse.

Routine physical: "You are so healthy. You have really strong stomach muscles."

True. But there's something missing in my back. The lesion is right there - at the point I bend.

And so I continue to search for answers. It's all a bunch of experiments.

I push hard.

I exhaust myself.

But it's quite clear that the broken synapse may not be helped with all of this.

Or can it?

Synapse: the point at which a nervous impulse travels from one neuron to another.

Only time will tell. And I won't give up, because people have already done that for me.

Other people support me, hope for me, gosh I know they pray for me.

It's really back to me, alone. But I know God is right there beside me.

Together

My older brother and I went to my "Uncle Harry'a" funsral today.

Upon arrival, we seemed a bit swarmed by all of our parenta' friends. Surprisingly, no one looked at my wheelchair. But maybe I shouldn't be so surprised - it's Ft. Collins. There are more reasons but I think "Ft. Collins" is a good one.

We sat with Fred, who was my dad's student long ago, who now teaches history at CU, and who is brilliant, funny, and caring. No one has ever done this - usually everyone stands and I sit, which is fine. But on the last hymn, Fred sat with me and didn't get up. That's Fred - he's unique.

I saw my first piano teacher, Mrs. Wilbur. I was amazed at her - I remember her as a grandmother figure, but she was there, not as a grandma, but as someone who seemed to be saying to me, "I'm strong and you are, too."

I saw my second piano teacher (I switched in 6th grade) who I see more frequently than others.

Many other people I saw - one wanted to talk athletics and we joked about how, like a good athlete, I had handcycled too hard too early.

And then of course there was the service. I never knew Uncle Harry had such a strong faith. This was quite evident in the service and in the words people spoke of him.

I guess I didn't realize hia love of music was so strong. A concerto contest in Ft. Collins was named after him and hia late wife. I had participated in the junior division of this contest. Fairly recently I uncovered a tape recording of when I had performed for that. It's now more special.

It can be nerve-wracking to go somewhere and see people I hadn't seen in awhile. But I was reminded that these people who were there knew me as a little girl, and to them I am the same Beth.

There were many tears at this service and hymns like "How Great Thou Art' seemed to have such power.

And the readings - so true to Uncle Harry, like this part of one:
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

I'll miss Uncle Harry. He won't be forgotten.

Peace.

When MS keeps you from those you love

Uncle Harry's baptismal journey ended yesterday. He wasn't really my uncle, but he was a close family friend and I think he didn't want to be called Mr. Rosenberg. He watched us grow up; I played with his granddaughter; he taught me about Kentucky Fried Chicken :)

He would always stop to visit once I graduated from high school, moved away from home, and came back. My parents always told me that he would ask about me.

I was diagnosed with MS.

For awhile, you couldn't tell, or I could hide it by standing still. Eventually I used a walking stick, then a leg brace, then a wheelchair (due to being pregnant), then my daughter's stroller, then a walker, and usually a combo of things.

The tricky part is when I would add something. When I added the brace, it was emotional and I remember my doctor asking me if I was ok and if I was ready for this. This doctor really understands me - I can't hide my emotions like I can for most people.

I got the brace and let it sit in my closet. I used to do a big walk and there was a steep hill that used to frighten me. One day I decided to try using the brace. And suddenly the hill was no longer frightening - I was free.

With each tool I started using, I grew to learn they weren't bad things - they were great! With the wheelchair I could finally go to the mall or anywhere else I wanted.

But the obstacle was returning to places where people hadn't seen me in awhile. Often the reaction from those people was one of sympathy - my MS was worse. What they failed to see was the freedom I was gaining.

Because of varied reactions, I chose not to return to see many people with whom I grew up. I didn't want the stares of pity, or looks that something bad had happened when in reality, I was more free.

In making this decision, I realize how many people I did not see for a long time, like Uncle Harry. I never knew how they would react, so I missed a lot.

Now Uncle Harry is gone and I will decide whether to go to his funeral, because everyone will be there who grew up with me. So I asked a good friend if she thought I should go. "Absolutely," she said. "You need closure."

"But what about all those people?"

"They don't matter."

She right. I will go back. And perhaps, on other occasions, I will go back again.

Peace.

Musical memories

Ahhh... those musical memories.

A song posted on Facebook brought them back...

College years

Journey's "Don't Stop Believing" - played at our dorm or apartment and Ian told me he was so glad I had the Journey CD, apparently because of our musical selection, or maybe he loved Journey...

The musical selection...
had a lot of Madonna in it - which our cross country coach hated - the same guy who posted the Journey song on Facebook. So we would make him listen to it on the way to meets and he would moan...

or there was U2...
when I wanted to go on a 10 mile run but didn't know the way, so coach was supposed to run with me, but he ate too much brunch (or something) and so drove his car behind me, loudly playing a new U2 song, repeatedly. Perhaps he just wanted to listen to U2 rather than run?

or there was Steely Dan...
never heard of them, but half our team went to their concert because Coach loved them, and then it rained and was cold.

But these musical memories are wonderful.

Perhaps they'e some of my best memories from my time at Kenyon.

I never did get to see Coach dance on a table as he was rumored to have done.

And I think the songs were part of my "MK" nickname, as I would get wrapped up in music.

Fun times.

Why is healthcare reform important?

This posting goes with the previous posting on healthcare back one or two entries (not religious). Was the point of doing that work so I could get my blog out on a site viewed by many? No, although I was excited. But what is more exciting is seeing the GOOD in the health care reform, seeing some support, rather than just hearing the flaws of the legislation.

I went to a talk on health care reform at the National ADA Symposium this summer and the first question was for people to raise their hand if they were excited about the legislation. Not many hands were shown - no one knew what was in the bill. 2.5 hours later, everyone was excited. But where were we to take this? How were we get the word out about the GOOD parts of the legislation, of which there are many? How could people learn about it? That was one reason for my blog.

On the way to work one morning I listened as NPR dispelled myths about the legislation, one of which was that people thought everyone was getting a microchip implanted in them as part of health care reform! Not many people have read the legislation, so it is easy to start things like this. I've read it - not the whole thing, but I have read perhaps enough to be dangerous.

Why are the parts I listed important?

Coverage for people with pre-existing conditions.
I've been told I should start a consulting company. I don't think I'll ever do that, but if I wanted to do so, I couldn't. I couldn't get medical insurance. In 2014 this will change. Then people who want to open their own consulting companies can, and they will get coverage. I think I cost the system a lot less than some people who do not have a disability. My disability, however, does cost ME a lot, not the system. Braces, wheelchairs, walkers, lifts, hand controls, handcycle, skiing, etc. - not all paid by insaurance.

Independent living.
People with disabilities want to work. They want to contribute to society. Society often is not ready for this. They want to either pity people with disabilities, or think people with disabilities are just obnoxiou. People are frequently shocked that I do work and they think it's because I have to. No - I have passions I'm pursuing and I enjoy working. To work, many people may need a bit of extra help. I'm lucky to have an awesome husband who helps, but some people are not that lucky. The legislation addresses this. It's important to give people their independence. If people get a bit of help to go back to work, then they go off government assistance, contribute to society, are independent, and are much happier (and happiness is key). I have trouble seeing how this is bad. Helping people achieve independence is much less costly than the alternatives.


Accessible medical equipment.
If you do not use a wheelchair, go borrow one and take it to the doctor. Depending on where you go, you may be surprised at what you cannot access. Is there a lower exam table, because you can't get up on a higher one? Can a woman in a wheelchair get a mammogram or is the equipment too high? Is there a scale for someone who uses a wheelchair? Yes, some of this may be expensive. But what if we look at how many people do not go to the doctor, get a mammogram, or get weighed due to mobility impairments? What's the result of these possibilities? Diseases may be diagnosed later, or perhaps someone develops diabetes or a heart condition from being overweight. These things will be more expensive than getting equipment.

Cultural competent training.
This will occur - it means providers will be trained on how to interact with people with disabilities. This is huge - when providers are not trained, then do people want to go see them? No - it's uncomfortable. And what are the consequences? See the previous paragraph.

Health disparities.
Data is often collected for race, ethnicity, and language preference. What if this is coupled with disability? I bet the differences become greater. But in general, data is not collected, so we can't confirm the consequences I discuss above. It seems maybe things could be worse than we are guessing. Maybe things are better. We need data to determine this. Let's start gathering it.

Lastly, beyond the economics of everything, it just seems like the right thing to do. Medical care for everyone. Inclusion again.

And...

Peace.

Trust

This thing ... trust ... has me perplexed.

People have come to know my name somehow as a person to call if someone needs help with a disability question. They trust I will know or point them to someone who can help.

I tend to trust people.

I thought I could trust people more.

This week on the news, I heard of another person speaking against the ADA. He had to fix his small business' bathroom for $5k due to the ADA and we was therefore bitter to people in wheelchairs. I'd gladly exchange my mobility problems for his $5k problem. So then, I am enlightened that not everyone is supportive of the ADA.

I tend to trust people.

I thought I could trust people more.

I do trust my rehab doctor who has followed me from when I first got my leg brace, who asked if I was ok and genuinely meant this, who understands the emotions behind needing another accommodation. He got me through the process to get on this new medication, Ampyra, and although it's not visible to many, Ampyra has improved my life and given me much happiness. He understands my drive, that I won't give up, and he supports that. AND, we get to theorize about Lance Armstrong - bonus! :)

I tend to trust people.

I thought I could trust people more.

While I am happy on this new medicine, inventing a new "rehab" program to see how far it will take me, it seems other things are thrown my way.

I am led to think
What?
Who?
Could this be true?
Why?

I thought we had come so far in terms of civil rights for people with disabilities. I want to keep believing we have made progress.

But I am told things, in confidence, that makes me question this. It really hits home when my name is attached to something. And then I hear the news.

This is coded so the few people who read it may not understand, but I will be able to look back at this post if there's any type of outcome.

I am questioning who I can trust.
I am questioning why people say things that are not true.
I am questioning who is telling the truth.

And I wonder...
Is it to hurt me?
Is it to hurt someone else?
Who is going to gain from not telling the truth?
What happened to make this occur?

I tend to trust people.

I thought I could trust people more.

Now I can't.

Someone told me I really need to focus on the new medicine and the miracles it has brought to my life and not think about other parts.

But in the midst of this happiness, I am saddened to have to wonder about trust.

But I will move forward, and I WILL trust that God will carry me through questioning trust. I believe, by trusting in God, I can begin to let go. And what will be left, very soon, will be the happiness.

And with this, I will feel,

Peace

Addressing Health Care for People with Disabilities

Posted 9/1/2010 on www.coloradohealthinsights.org (go there to see the "real" blog). My thoughts on health care reform and disability...

Bio: Beth Newsom is a project coordinator at Kaiser Permanente. She co-chairs the organization’s People with Disabilities Association, is part of the leadership network for the Rocky Mountain ADA Center and regularly presents on disability issues. Beth is pursuing a master’s on public administration through the University of Colorado at Denver. This posting is her own and does not represent Kaiser Permanente’s positions, strategies or opinions.


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In 1990, the Americans with Disabilities Act (ADA) became the first comprehensive civil rights legislation for people with disabilities. Although the ADA opened many doors for a now estimated 54 million Americans with disabilities, it did not address the many problems they regularly experience related to health care. The Patient Protection and Affordable Care Act (PPACA), signed into law on March 23, 2010, addresses many of those problems.

There are many viewpoints as to which elements are most important for people with disabilities. Here are five critical elements that affect people with disabilities in positive ways. More information is available at http://www.healthcare.gov/foryou/disabilities/index.html

•Denial and limitations of healthcare coverage. Starting late in 2010 for those under age 19, and by the year 2014 for everyone, health care plans cannot exclude anyone from coverage and cannot charge a higher premium due to a pre-existing condition, which includes disabilities. Between now and then, temporary “high-risk pools” will cover people who have been without insurance for at least six months, have a pre-existing condition or have been denied health care coverage, and are U.S. citizens or reside in the U.S. legally. The programs are run by individual states or by the U.S. Department of Health and Human Services.

•Independent Living. To enable people with disabilities to live as independently as possible, the Community Living Assistance Services and Supports (CLASS) program will begin in October 2012. This voluntary insurance program will provide assistance to working people over age 18 who need help with daily activities.

•Accessible medical diagnostic equipment standards. These standards will assure access for people with disabilities. Examples of equipment include lower examination tables, weight scales, mammography equipment and more. Many of these standards will improve access for people who use wheelchairs.

•Cultural competency training. Many incentives will be available for training in the care of people with disabilities, targeted toward current and future providers.

•Health Disparities: Federally conducted or supported health care or public health program or activities will be required to collect data, including disability status. Such data will be used to compare health disparities and for required reports to Congress concerning disparities.

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.

Peace.

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.

Peace.

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 amazon.com. Get a copy and read it.

Peace.

Inclusion

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.

Peace.

"Special"

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.