Dear (fill in the blank),

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

Dear...

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

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

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

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

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

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

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

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

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

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

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

Live, laugh love.

Peace.

Celebrating yesterday, today, and 25 feet in the future

Wow. These are incredible times.

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

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

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

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

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

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

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

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

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

Continuing various journeys.

Flipping things

Children with disabilities - somewhat often heard.

Parents with disabilities - seems a bit rare - can be isolating.

Children of parents with disabilities...

I imagine many parents struggle with similar issues as kids grow up. Kids get angry; kids do not do what they're told, kids don't want to do homework or chores... and the kids may be "angels" out in the world.

I have one of those "angels" out in the world. "She's such a good kid... she's so smart; she's so helpful; she's (fill in the blank)..."

She can be like that at home but many times, no. The "angel" can get into the car and transform herself. Chores or general helping become because mommy needs help, even when told other kids do the same things and their parents don't need help. Setting the kitchen table seems pretty standard - no.

Helping get "Nemo" out of the car is so neat when others are there. When others aren't there, it has become an exercise of exasperation.

Many people say she will grow up with more empathy toward people and there is literature to support this. But in the meantime, we will struggle a bit.

God with each of us - perhaps we will draw more together as we sometimes do. I'm the one she comes to when she's upset and needs someone to listen; I'm also the one who receives her anger, often directed at my legs and me being slow. I'm the one she comes to with a secret, with an idea, with something she did wrong and regrets. I'm the one she trusts completely. I'm the same one who receives her frustrations with whatever, somehow turned into my fault because of disability.

I hope the "angel" decides to come home with me on a more regular basis, soon.

Peace.

Are you ok?

Sorry for the formatting...

The interesting thing that happens with MS is this...
1) You are diagnosed, and sometimes this takes years.
2) People say they are _so_ sorry, as if you are now about to die, while you meet other people who assure you that you'll be ok.
3) Time passes. Now different things can occur.
a) People seem to "forget."
b) People ask "How ARE you?" and you know they just want to know how
your MS is.
c) People compare you to others with MS, and can tell you how person x
is just fine compared to person y, who has trouble walking, and thus
is judged to have horrible MS.
d) People keep pestering you - use the wheelchair; the walker looks so
difficult. Don't push yourself. Are you sure you can handle a, b,
or c?

What to do?
1) Just diagnosed. At least now you know it's not all in your head.
2) You really are ok. Listen to the people who tell you that. No matter what happens, it will be ok, even if it's definitely not what you want.
3) a) People are probably "afraid" to ask. They want you to continue to
live your life. The rare person will realize they can ask how
you're doing occasionally - knowing how often to ask is a gift - I
haven't figured out how the rare person knows - they just do.
b) It's kind of fun to answer "How ARE you?" with something totally
unrelated to MS, like "I have had enough of my cat, dog, and
guinea pig :)
c) Handle this the appropriate way, by explaining the differences in
MS depending on the person. Alternative: if you are person y,
tell them you do have horrible MS - and suggest they clean your
house and bring you dinner once a week.
d) The pestering people who want you to use a wheelchair, etc. They
do have good intentions gone wrong. Explain to them, again and
again and again and again... why you do what you do. Alternative:
tell them you are aiming to slither on the ground like a snake
at some point. Using a wheelchair will make this impossible.

Just speaking for myself, I want people to occasionally ask how I am. I'd like them to be asking about all of me. If they just want to know about my MS, I wish they would specify that. I wish people didn't compare me to others with MS, but that's what people do. My MS is unique - so is everyone's MS - it's a strange disease! I'm not sure how to handle the pestering people. I guess I'd ask God to give me the patience to accept them as people who won't change.

So yes, I'm ok. I wonder if everyone else is.

Live. Laugh. Love.

Movement, MS and ALS style

"Well, you know, you can't move, so you can stay where you are and others can come to you."
"I can move."
" (pause) I mean, you can't get up."
"I can get up."
" (pause) uh...... I mean, you can't walk."
"I can walk!" :)
"Well, we wouldn't want you to do that."
"Actually, I should walk."
"??????????? (puzzled look)"

And so we move.

In our wheelchairs, circling a room.

Sometimes in our beds, where we determine what still moves.

When we develop a drool, and friends put names to it, joking about calling it "mountain drewl."

In the movements of our eyes, if they are needed to type and communicate.

In our minds, as we consider possibilities.

In our dreams, where we move like we remember how we used to move.

In our memories which cannot be taken from us.

In our hopes.

In our prayers.

As we continue our journey.

As God moves alongside us.

Peace.

Community?

Something has been bothering me but I couldn't put my finger on it until we heard the story of the good Samaritan. Not that I'm the good Samaritan, but... well, the story.

My daughter is going into a new grade at school. Word got out from a stay-at-home mom that the teachers had been posted. My daughter had the same teacher as the mom's daughter; then we emailed back and forth about another friend, wondering whose class she was in. And then came the comment "and I really like her family, too." Huh? That just struck me as odd. Perhaps it was just one of those offhand comments that I might have said, but it followed a couple other interesting comments, so that's why the "huh?". I never thought of considering whether I like a kid based on their family, unless it was subconscious.

So I thought back to when I was a kid and I made friends with a girl who everyone picked on. Her family lived "across the tracks." She was behind in school and the teacher picked on her too. But for whatever reason, she and I were friends. I wanted her to come to my birthday party so my mom had to pick her up (not sure why). She came a bit early and had a snack. She was more thankful than any other kid and insisted on drinking all of her orange juice as she wouldn't want to waste any. Eventually she moved, but we remained friends via mail for quite a few years later. My parents never seemed bothered by where she lived or who her parents were. So perhaps that's another reason I found the comment strange.

In another scenerio in elementary school I bonded with a girl who had Downs syndrome. Brief memories there, but I remember there was a pole, so easy to slide down - everyone could do it without thinking - but her. Somehow we bonded and eventually I coaxed her down that pole.

And this story goes along with another comment on having to have kids with special needs in the same classroom as those without. Oh no! Isn't it horrible that kids might learn acceptance of other kids who are a little "different?" I know they require extra attention - but perhaps there are better life lessons there than taking a math test. And it may be hard when there is more than one in the class. But, I think it can be done.

A mom outreached to me recently in a state of almost panic. Her daughter is a teenager but needs daycare because of her disability. No one was taking her. The mom was about to be forced on leave to care for her daughter. I connected with a friend of mine and they worked it out. I get other calls of semi-panic where someone can't find who will help them. I've been there and been lucky. Why it has to get to panic stage I don't know.

I'm sure there were plenty of times growing up when I didn't play the role of befriending the stranger and was instead mean, and times now when I miss it. I'll forever question what I should have done when I encountered a woman with anorexia; I wanted to help, didn't know her, felt it wasn't my place, and am left wondering.... And the point of the good Samaritan is not just befriending someone who needs a friend, but in the story, the enemy is the one who helps the one who is in trouble. I'm not dealing with enemies. And I may be the one who is ignorant and says "I like her family too."

But I think kids can and should be friends with so many other kids, and it shouldn't be based on the family of the kid. Perhaps school is the one place where a kid escapes a bad situation at home. Sad, but what if they find a friend at school and the two of them share happiness that doesn't exist everywhere? And what if that carries them forward in life somehow?

I go through McDonalds a lot in the mornings for coffee. A woman started working there and I wondered how long she would last as she was just goofing off and doing, well, not much. But she changed - she and I had brief conversations. Soon she went into management. And the other day she told me she's going back to school, starting with her GED. That is great. Someone saw her potential, and I bet she can do it. Maybe no one made a difference earlier in her life, but perhaps now someone has.

We all need to look beyond those "railroad tracks," me included. There's beauty over there. There's a whole lot of potential. Add opportunity. Really, the people on both sides look very much the same.

Community

It was my daughter, Lori’s, first time at church day camp - she went at our church. I was there on Monday, Thursday night when they did their program, and Friday morning when it ended. It was interesting to watch how the kids changed during the week. Apparently there used to be over 100 kids at this camp and for various reasons, this year there were only about 40. And while most viewed that as a negative, I thought 40 seemed like a great number of kids. 100 would be different, and probably good too, just in different ways.

On Monday, a very quiet group arrived with a few clinging to parents or sitting on the floor when everyone was standing. Counselors worked hard to get the hesitant kids excited. I thought these kids might have a week of misery. By lunch, most kids had already dropped much of the hesitancy and were smiling tentatively or giggling. A little guy asked me at lunch how I eat at the table with my wheelchair and another little guy asked why I use a wheelchair. I like when little kids ask these questions without pause.

Thursday night and Friday morning I returned to a much different group of kids. On Monday, the leaders had taught the kids that to get quiet, they would raise their hand and then others would join to be quiet. I thought there was no way this would ever be needed - the group was too quiet!

But on Friday, no one was hesitant. Everyone was singing or doing something to be active. Kids were hugging other kids. Counselors or older kids had kids sitting on their laps. It had become a little community.

Lori and I then drove to Ft. Collins to see my nephew and other family. And we taught the hippo song - still my favorite. My dad seems perplexed by all this church stuff. He's a PK - pastor's kid - he has always hated that. But I think it's because he grew up in a different time. He was made to go to Bible camps and hated them. I assume they were different then - I didn't see anyone hating the camp where Lori went.

Then he asked do we really go to church on Wednesdays - is it almost every time? I find this interesting. I imagine he had to go to all church stuff as PK, that it was very different and serious. So we grew up traveling long distances to church and going at most once a week.

Meantime I had a group of friends who were Catholic. They seemed to have a community. They got to go to church on Wed with their friends and it was close. They went on ski trips with friends. I wanted that - why didn't I have that? I thought it was a Catholic thing.

Years later I joined a Lutheran church. I started going on Sundays, started getting to know people, and gradually added things. And I found communnity. And in taking Lori, she has grown to love this too. It's 20 minutes from where we live because we moved. And my dad may seem puzzled by this. I wonder how he missed this sense of community. It must have been a totally different time and place kind of thing.

And as my "little" brother and I walked, he asked me, when I'm in a grocery store, do I want people to ignore me because I use a wheelchair, or talk to me, and talk to me at eye level or what? I told him I want them to treat me like anyone else, and to do what is comfortable for them. And then I thought, I really want them to be like almost all people at church. It doesn't seem so hard there, most of the time. Perhaps that is because I feel the sense of community. It's something I haven't really felt other places. And I felt it again with the kids this week. And I am grateful.

In the beginning God made the sea,
and the forests built with trees.
He made the mountains up so high,
and at the top he built as sky,
God's fingerprints are everywhere,
just to show how much he cares.
In between he had some fun.
He built a hippo that weighed a ton.
Hip - hip - hippopatomus.
Hip - hip - hooray God made all of us.
Hip - hip - hippopatomus.
Hip - hip - hooray God made all of us.

Peace, thanks, and gratitude.

Getting "hugged" by MS

Posting this in the off chance someone with MS reads it, gets the same thing, and is able to remain more calm...

Hmm... the continual gifts that MS brings to my life. I'm not so sure I like this. Wait, I am 100% certain I don't like this... this newest gift. Over the past 2 or so years I have had increased invisible symptoms of MS... feet on fire, legs ache beyond belief, resulting fatigue, etc. Luckily these come and go. Now there's a new one. I didn't think it was MS until I told my friend (who has MS) about it, and she gave an explanation which makes sense.

I had been working from home one day and went to pick my daughter up from a "day camp" at our local fieldhouse. As usual, I got Nemo, the wheelchair, out and wheeled into the building. I was early (it was almost 3:30) and the kids were still walking back from the park. I was expecting people at my house when I got home, but there was nothing unusual - I was calm, just picking her up, just there, waiting, until...

Ouch. Pain, all of a sudden, in one small point, in my chest, or kind of like a band around my chest. Was I imagining this? No. Definite pain. Oh no, this must be a heart attack. Let me check the other signs. No pain down the arm. Not nauseous. Let me take my pulse - it's normal. Can I breathe? Yes, I can breathe. I can take deep breaths...

(thought processes) Should I ask for help? Where is Lori? I have GOT to get out of here. Is it 3:30 yet? Who would I ask for help? Doesn't anyone care? Wait, they don't know - this is invisible. If I go to the hospital, what are the people coming to my house going to do? Where's my phone? People are looking at me (because now I'm taking huge breaths to assure myself I can breathe without difficulty and am darting my eyes everywhere in case I see Lori).

Eternity seems to pass. Lori arrives (in reality maybe 5 minutes have passed). "Mommy, guess what we did today?!!" I have got to get out of here now. We leave. I start to put Nemo in the car. Just moving a bit seems to make this go away.

Lori starts talking. The symptoms go away completely. We get home; my friends arrive with their kids. The end?

MS hug? Not sure, but I'm thinking that's it and will ask my rehab doctor when I see him next week.

If so, I don't like it and I don't like the affectionate wording of "MS hug."

Let's rename it... "MS heart attack," "MS surprise gift of extreme pain," "MS gift from the heart," "gift unwanted," "MS chest panic," "invisible knife in chest." It's definitely not a hug.

Apparently potassium helps with preventing more occurences of this. Bought my potassium!

I wonder, when I'm in the middle of strange stuff like this, why doesn't God come to mind for me? That might relax me a bit!

And so, another invisible symptom, I think. That, to me, is a hard part of MS. People see MS and think the visible is all there is. But the invisible is harder for me to take. How lucky I am to have lesions in my spine but not my brain. Unfortunately, lesions on the spine cause this - it's a spasming of little muscles between ribs, from what I read.

I'll still go with what my rehab doctor says. "We need to keep this (points at my mind) strong." Yes, he's right. But my mind keeps wondering if the new gift will come back. Can God help me to let that go?

Peace.

Lean on me

Funny how this happened so close to Independence Day, when we celebrate our freedom, which we quite often take for granted.

A bit of background.
Most places I go, I take my wheelchair out and assemble it when arrive, then disassemble it when I leave. It takes a bit of energy. Friday I started my day having breakfast with a friend. I then drove 5 minutes to work. A friend of mine at work helps me to do leg lifts every day as part of my therapy, and we did that. Since the discovery that my legs have more muscle than I knew, I've been walking more. I walk 5 times a day at work and have doubled the distance I walk in each of those 5 walks. Friday I had to squeeze the walks into a tighter time frame as I had to leave early for an appointment. By the time I arrived at the appointment, my legs were pretty tired from all the activity of the day.

Lean on me.
I got out of the car. I lean on my car for support. My arms are, in a sense, my legs. If you took the ground out from someone, they couldn't walk and would fall. If you take away my "ground" (the car), I also can't walk and will fall.

I made it to the back of the car and assembled my wheelchair. Pop! There was a man... "can I help you?" "No thanks." And my hand was on the trunk. I was closing the trunk. I was also leaning on the trunk - it's part of my "ground." He started closing the trunk. The trunk, my "ground," was giving way. I urged him to let go of the trunk right then.

I sat down in my wheelchair. He looked at me. It was the perfect teaching moment. But I was in the latter stages of panic and he was in a state of disbelief, staring at me like I had completely lost my mind, saying, "I'm _so_ _sorry_ I tried to help you," in a non-genuine manner. And that was the end.

I had become one of _those_ people - the people who refuse help and are extremely rude about it. He had become one of _those_ people - the people who grab and try to help but don't understand.

He goes back to society shaking his head.

And me? I retreat into myself. I think some people don't understand and never will. This had nothing to do with my independence. This had everything to do with my safety. And for whatever reason, this had an emotional sting to it. We've come so far toward inclusion, toward acceptance. And we still face barriers which cause us to retreat.

We are so independent and yet so dependent. We are so free and yet so held hostage.

Happy Independence Day. Let your spirit carry you. And we continue to press forward.

The invisible storm

Every 6 months, every 5 months, and then luck - 9 months - a long time - between MS attacks where I go on high dose Prednisone - a steroid - to get better fron an MS attack. It's worked really well this time - the steroids, that is.

"It's the most fantastic, horrific ride," someone said. That it is. Done now, mostly. Relief.

Backtrack a few days.

On steroids, I awake. My legs are still and very calm. I lie there and imagine what it must be like to wake up without leg spasms. So calm. So peaceful. Intense calm and peace.

I'm on the way to work. Steroid fury. I wonder if this is what road rage is. Could that BMW SUV in front of me just GET OUT of my way, now? Could I charge forward to move them, even though there are other cars right in front of them? Deep breaths.

Staying around people. It keeps the edge off this really angry person who is inside me for a time.

Then again, people are talking at work. Could they all just be quiet and go away?

Is there a place I can go scream?

No one knows this is going on - I want an identification band - "Woman on high dose steroids; treat with care; may want to stay clear."

Doesn't anyone care? Wait, no one knows.

"I've been on steroids for asthma - I know what it's like." Nope. Sorry - asthma gets you 60mg per day; MS gets you 500-1000mg per day. I don't want help - everyone - go away. Leave me alone.

I half the dosages this time - I feel I'm getting better and I'm tired of being mad at the whole world (except in the morning).

I come off steroids. My face breaks out. My head hurts and itches at the same time. I'd like to sit in the shower and wash my hair all day to deal with this.

I go on. I feel much better. Physically I feel completely better. Lori and Dave survived any potential yelling outbursts. Luck. Relief.

I wake up in the middle of thee night. My legs spasm. Back to square 1. But it's better than square 0. It is done.

There is peace somehow in this. God is with me. And I seem to hear a similar story of fury in the wind outside, while everyone sleeps. Can I join them?