Lifted

Out there again yesterday handcycling - my surgeon wanted me to try handcyling (uses different muscles than the ones bugging me right now). Slow ... 4 miles ... not about distance, hills, or speed.

Beautiful, on the bike path near my house...
- the sound of birds in the early evening
- new spring leaves on the trees, gently swaying in the wind
- a gentle breeze I could feel on my face, my arms, my legs

I missed this - being outside riding, feeling the air (and in that air, a sense of God), hearing the surrounding sounds. I'm not one to ride with my Ipod - I enjoy just being out in nature and listening. This ride lifted me, pulled me from feelings of being restricted in what I could do and where I could go.

And as I made the final turn into our cul de sac, a teenager saw me, opened his mouth widely, and exclaimed, "That is cool!"

Yes, it is so cool, in more ways than most can imagine.

Thanks be to God.

"I know"

We were in a store where I was investigating a mysterious charge on my credit card. It was one of those "hidden" charges, where I didn't opt out of something on the laptop I bought, so 6 months later I got charged.

As I was getting the information, a guy who was probably 18 was behind the counter, smiling at me like he knew me. Typical of me, I didn't have any clue who he was or if we had ever met.

He said, "I know what it's like ... (indiscernible) ... for 8 months." "8 months!" I said, thinking I would have to battle the mysterious charge for 8 months. Then I realized he meant the wheelchair - he must have spent 8 months in a wheelchair. I smiled and said "I had shoulder surgery." Internally, this pot of boiling water was just about to overflow. Just as I cannot understand his 8 months in a wheelchair, which must not have been fun, he cannot understand my time.

We have a video on culturally competent medical care for people with disabilities. It was made where I work, by and about people with disabilities (mostly employees). One of my favorite parts of it is when my friend Cheryle says "I hear it again and again from patients, that one of the worst things you can say to them is that you know how they feel. (pause) Maybe you can say 'That looks frustrating' or 'I hate it when things like that happen to me,' but don't ever say you know how they feel, (looks straight into camera) because you don't."

Recently, the CEO of the MS Society offered a column,
http://www.nationalmssociety.org/multimedia-library/momentum-magazine/momentum-summer-2010/index.aspx
(go to the bottom and click on "On My Mind")
She gets it (in part that she doesn't have MS). She and I had an email exchange before this, where I contemplated whether she was "getting it right." Now I know - she thought about our emails. She listened, really listened.

What cannot be understood by many is this. Perhaps using a wheelchair is fine. It's not my ideal. I'd rather be running. But it can be fine. I can go faster. I can go more places. It has improved my quality of life. For this guy, it must have been the worst thing ever.

What could not be understood today was the invisible. I had shoulder surgery which would be minor for most. But I met with the surgeon this week and he confirmed it's going to be harder for me. So today, I took my car to the shop. Then we used my husband's car. We went to the library, then home, then to lunch, then eventually to pick up my car, and then to this place. Lots of transfers in and out of the wheelchair made my shoulders somewhat beg me for mercy. My husband's car sits lower, so it hurts more (shoulders) to get up.

There are other invisible symptoms. No one knows what I'm going through. Take that back. God knows. Likewise, I don't know what anyone else is going through. God knows.

I have learned much through this process. Surgery with MS is hard and recovery is fatiguing. Search on the Internet and post-surgery depression is common. I'm thankful my mom has been here so much to help with that. Sadness and frustration accompany not being where I was before all the pain started. But I'm getting much better. I have not learned patience - perhaps I never really will.

So, I am perhaps glad this guy at least said hello and tried to outreach. I wish we the time had been there to share our stories and discover what was unique about each one. I do like to hear stories from other people, about themselves, friends, relatives, etc. Each story is unique. Each person is unique. There is learning in each story and person, and there can be similarities.

Perhaps by sharing, we can find similarities and differences. We can discover that we each have a different journey. Likewise, we each have a different faith journey. No one really knows what anyone is going through. No one, except that person and God.

Children, parents

Today I was on a conference call where we were discussing a program to teach daycare centers the basics of the ADA (Americans with Disabilities Act). Some things have been started - drafts - they are interesting. Immediately memories came flashing at me. And something was missing. There was a lot in there about children with disabilities. And there should be. There was generic stuff about the ADA in there and how the daycare centers fit. And there should be that. There was nothing about parents with disabilities. I asked that they add this, as going through daycare, I really did feel like the ONLY parent with a disability. Someone else spoke - they knew another parent with a disability. Now there are at least 2 of us and I know there are others, scattered. It can be lonely.

The memories... When we moved to where we are now it was a bit odd. My daughter needed a new daycare. I always liked the home daycare, but I thought we'd check a center to explore. At that time I pushed my daughter's stroller like a walker. And upon entrance to the center, it was awkwarddddd... attempts not to stare at me. At a potential home daycare, I used my walker. Freak show central! The woman couldn't keep her eyes off the walker. I anticipated somehow being reported to child protective services due to the walker. And at one point I was lucky. I found the perfect home daycare. Then the woman running that went back to work, but she had us go to another lady who was awesome. So I thought I was very lucky.

In the elementary school category, it has just been ... strange. I think it might be where I live, but I am not sure. My daughter has had great teachers and the teachers have been great when I've talked to them. But outside that ... strange. Very few seem to want to talk. I start conversations but usually don't feel that I fit in. If someone else starts a conversation, it's generally an unusual question like, "Is it hard for you to get around on snow and ice?" Hmm... I am not sure what to make of all this. It's totally different than when I go almost anywhere else (well, especially if I leave where I live and drive to the next closest suburb) Going to the school is always awkward until I get into the classroom, with the kids. They don't seem impacted. They all know me. Last year I was greeted with hugs.

To kids, for the most part, I'm Lori's mom. Kids ask me good questions, and sometimes, unfortunately, I'm not in the mood (see "Anonymous"). But I try to hide the mood, because the questions are good.

And then there is Lori. She can be very understanding, or very verbal thinking she only does things (that all kids do) because my legs don't work. But Lori will educate others. She is constantly learning, constantly asking questions. She somehow has an understanding of how to treat people that I haven't formally taught her. She has somehow learned, and passes this along to her friends.

I think perhaps the best teachers may be the children. Children can teach about children with disabilities, but they can also teach about parents with disabilities. Or perhaps, adults can learn from children in terms of how to act, sometimes...

Children of God ... all of us.

Living Together; the world of diversity

Last night I watched the end of the series "Lost." In the 2 hours before the real show, during the look-back, comments were made about how the show had different cultures within it, and how part of the show was on how these different cultures could live together.

Then today I was on a seemingly eternal drive home from the doctor, listening to "Talk of the Nation" on National Public Radio. They were talking about new legislation in Arizona concerning ethnic studies. As I continued to drive, I grew more and more irritated with what seemed a lack of knowledge surrounding diversity. There are history classes and ethnic studies classes and many feel the 2 should somehow be combined. I think we have come so far and now seem to be going back.

One argument either for or against ethnic studies is focus on discrimination. It's the opinion of some that to end discrimination, we should include different ethnicities in general history. Some feel that white Europpeans don't get represented in ethnic studies.

Stop. I'm the daughter of 2 history professors. Europpean history falls within history departments. Others were arguing we don't talk about Italians or other Europpeans, and those within the US. My mom was an immigration historian. She taught about Latin American history, but did a ton of research on Italian immigrants, specifically those living in Denver. I remember trips we would take to Denver where she would interview immigrants, most of whom were elderly. That's just my mom. There's a ton of work on Europpeans - everyone missed out on the dinner parties my parents had when we were kids! And they also missed out on visiting battlefields within the US. Note: my parents' kids all dodged history and went into math and science!

Back to ethnicity - if there had not been discrimination, I suppose we wouldn't need ethnic studies. But we still have discrimination, and we have disparities. I work in healthcare and know the disparities are there. We have developed a series of award-winning videos to address disparities of different groups. Through studies, we know certain ethnicities are at higher risk for different diseases, that their outcomes are worse once they get these diseases. Efforts to reach different populations must differ, and of course, you can't assume everyone falls into the same bucket.

From ethnicity, we get to other groups - of course, people with disabilities. Outreach to this culture is generally different. People with various disabilities are at greater risk for certain diseases. Similar scenerio to different ethnicities.

If we go back to legislation getting rid of efforts which strive for inclusion, we go back to exclusion. We close the door to other groups. I heard an interview on NPR with a guy who seemed against elevators. People with wheelchairs are fine on the first level. Discrimination exists. Disparities exist. We can't throw them with everything else and assume they will be addressed, because they won't.

What I find interesting is to consider who was in the Bible - did it focus on the majority groups, those who were just fine? No - much focus is on the marginalized. Jesus focused on the marginalized, or those who weren't exactly the same as others. We are supposed to learn from that. Have we? Did we? Are we going backward? Can we start moving forward again?

Where I work - a place where diversity is highly valued. If times change, will this change, not just where I work, but where other companies place so much effort?

Inclusion. So important. We must learn to live together.

Peace.

How far?

MS - strange disease.

One day you run; the next day you can't feel your legs.

One hour you type and write; the next hour you find yourself looking at a pen and pondering the best way to hold it to take notes that will make sense later.

You think your hands no longer work and won't; one day you start to type and write again, as if nothing happened.

You think your legs are done doing anything; someone discovers muscles still there, someone else believes in you --> you believe, faintly, in yourself.

You buy a bike that will pedal for you, intending for it to help with circulation in your legs; one day you bike with the machine for 5 minutes, then turn the machine off, and surprise yourself by biking 5 more minutes all on your own.

Things can turn, this way and that, things disappear, things reappear. Progressive disease, yet with 2 steps taken back, 1 step or more may be taken forward. How far? No steps? 1 step? 2 steps?

Faith at all times, helping hold during the bad times, helping encourage and push forward during the good. With MS, expect the unexpected. With faith, know some kind of presence and peace. And then, envision how far, because you never know.

Anonymous

There are times I like to be anonymous - no one knows who exactly I am, what I believe, etc. Because I use a wheelchair, this can be difficult. But in my car - that's the best place to be anonymous. People can see the wheelchair, walker, and child booster seat. But nothing says who uses these things - I could potentially be borrowing someone's car. So I love that. No bumper stickers. I don't have the wheelchair symbol on my license plate - then I have a greater shot at being anonymous. Once I leave my car, anonymous disappears immediately. Wheelchairs don't easily disappear in a crowd, even if no one talks to the person in the wheelchair.

Today I took my daughter to a park. She's 7 and can actually put the wheelchair, "Nemo," together. She likes to do that for now as people always comment on it. Once in Nemo, off we went, for her to play in the park. I was in an "anonymous" mood - I didn't really feel like being bothered. So of course...

A little boy yelled, "what's wrong with you?" I ignored it - like I didn't hear it. So he came directly to me, face to face... "what happened?" And he was just the age that a simple explanation wouldn't do. There wasn't time for a big discussion. And I wanted to disappear.

So I suppose I played a little game, playing dumb, so we got to the point where he knew my legs didn't work well. "So, you can walk?" "Yes." "Then why don't you?" "I'm too slow." What would happen if you would speed up?" "I would fall." Lori smiled and rolled her eyes. The litle boy left.

Two minutes later he was back.
"We'll be praying for you."
"OK, thanks."

Lori played, we got back in the car, and I became anonymous again.

Thanks be to God for that. And a little boy is going to be praying for me tonight, and I wonder what that prayer will be. I wish the prayer could be that the lady he met, could she be anonymous at the park? Could we erase from our minds, the wheelchair, and instead just see the mom with her daughter at the park? I suppose that should be MY prayer.

Surprises

I love to give feedback. It can be positive or negative, people can ask for it or not, ... It's somewhat funny because growing up I was much different. I was the very shy kid in groups, and would sit in groups and spend a whole lot of time thinking of what I could say, and not say anything. And now, I don't think that way. I let things come to me and then I communicate them.

So very recently, the Christopher Reeves Foundation posted the top 10 things that irritate people who use wheelchairs. I thought the list was pretty interesting and for the most part, fell in line with what I thought. I sent an email to a friend asking if she had seen this. Yes, she had - but she asked if I had noticed all the comments! Of course I hadn't, so I went back.

What happened with this top 10 was not any kind of education, of people thinking wow, I hadn't thought of that. What happened seemed to be people drawing distinct sides which didn't seem relevant to the topic. There were 2 of the top 10 I remember well.

People who use wheelchairs are irritated at the number of people who use acessible parking spaces when they shouldn't. This was taken to mean, by some, that only people with wheelchairs should use these spots. So a bunch of people commented that they needed the spots too. The article didn't say only people in wheelchairs should use the spot. What irritates me, as a person who mainly uses a wheelchair out in public, is when I see someone tear into an accessible spot, leap out with a huge stack of papers and very high heels, and run into a building. Or, I get annoyed at my daughter's dance when the spots are used as drop-off spots, when there is a drop-off location.

People who use wheelchairs were also irritated by the use of accessible restrooms by people not needing them. Mass confusion! Major discussion of bladder control and the lack of understanding behind it. And I just thought I get annoyed if someone is using the stall as a dressing room, or likes the extra space. Plenty of people apologize to me for using those stalls and they explain they have bad knees or something which is usually obvious.

So then I was left puzzled. This column, meant to educate, instead just created a ton of postings. Given that, I didn't post there. What I am left thinking is how this education could have been done better, so it didn't create such bitterness everywhere.

When we educate surrounding all kinds of diversity, not just disability, it sometimes really turns people off, or can simply feel like preaching to the choir, when I think what is really wanted is simple acceptance and basic understanding. We seemed to have that at a point, but recently we seem to be drifting...

What people may not quite understand is that the first time something happens, well that's ok. The second time - mild irritation. By the 10th time, it's like a boiling pot of water about to overflow. And then the water overflows and education becomes frustration and taken to mean all these people are angry and bitter.

So, educating before the boiling point...

when we're already drifting...

in search of peace...

Disability and poverty

Today, I was one of a few people asked:
"Do you know anyone who can do a presentation on culturally competent care for people who have disabilities and are also economically disadvantaged?"

It was asked as if this is not a common thing - perhaps something new out there.

Do I know anyone?

Let me think. I don't think having someone "present" on this is the best option. I think the best option is to get a panel of people. Rather than have one person come, get people with different viewpoints. And get people from the population. If you want to know something about someone, talk to the someone. Don't get another person who is an "expert" on the "someone" to come talk. It may be ok, but it's not the best option.

So, do I know people who could be on this panel? Of course. Unfortunately, poverty for people with disabilities is high. A high percentage of people who are homeless are also people with disabilities. If you suddenly get a disability, it turns your world upside down and you may find yourself without any set of finances. That's what I'm told.

I have a few friends who almost became homeless and one may still be struggling. I know many people who are very poor due to their disability.

So we could have the panel, or there are plenty of volunteer opportunities.

This could be "fun." Hopefully, someone will listen.

Going back, to work

The time has flown. I thought I would take 2 weeks off for surgery. 2 weeks quickly turned to 4, and this week was the start of 4 at half time, with most of those being at home.

I thought in my time off I would get so much done. There are photo albums I wanted to update, my dad wanted me to look at these letters his mom wrote to his dad long ago, my mom wanted some of our house to be cleaned (I did too!), and on and on. Somehow rest was supposed to find a place, but it didn't find as much as it probably should have.

The time was, instead, spent on coordinating physical therapy (PT), occupational therapy (OT), acupuncture, how to get Lori to her activities, doing exercises and stretches, elevating legs due to swollen feet, etc. It feels like other times in life where I think there will be extra time made for things that are important, but never get the attention they need. Lent, Advent - reflection time. I add it, but never enough.

Then, I return to my "normal" state of things, glad I got to do some things, but disappointed that I didn't get to do enough of the things I thought I would get to do. And there is a sense of sadness in that.

Perhaps if these other things are so important, then I should still find time for them, and not wait for some "special" time. And then perhaps, there will be a greater overall happiness because important things are not just saved for special times.

One thing did get done while I was out... coffee. Every morning my husband would make it. Instead of drinking it on the way to work, I would spend the time at home just sitting there, drinking it. If it was nice outside, I would go on the deck with it and soak up the spring air. That created happiness. Knowing I did that, and it wasn't on my formal "agenda," maybe I should figure a way to find time for other things, one by one, without a real formal agenda, and without a set special time. It seems so easy (like finding time to sit and enjoy coffee), and yet so difficult.

Looking up... assurance?

Sleeping with clonus

Maybe someone will read a random entry of mine and use the info when making a decision. That being said...

If you have MS and limited mobility, I wouldn't recommend shoulder surgery - not because it won't help your shoulder, but because your legs may "rise up" in protest for some time, and your rehab plan may focus more on your legs than your shoulder. So if you can avoid shoulder damage, avoid it.

Clonus is defined by the great source (note sarcasm) Wikipedia as "a series of involuntary muscular contractions due to sudden stretching of the muscle." If you've had it, you know it. Your leg jumps, your toes point up, and then your whole leg can shake for about 10-15 painful seconds before you get a brief break. In athletics, it would be like intervals, where the rest period is never enough! The clonus then occurs again, and the "intervals" can last to maybe 30 minutes. Then, an hour break. Then maybe another series of "intervals." I still need to record it - smile.

During the day, some of this can be controlled by standing or walking. But who feels like standing and walking regularly at night? So recently, I have felt like I am headed to bed tired, yet sleeping is some kind of torture chamber waiting to happen.

Every night I have my nightly prayer "ritual." Last night I thought, I wish I could ask God to cut out these interval sessions, just for tonight. But God doesn't cause the clonus, so I asked God to help me through whatever was coming last night. And what came? The torture chamber came, in full force.

I got up and walked twice. I slept part of the night in our recliner chair. "A ha!" spied the cat ... "a lap, and bonus! my favorite blanket!" I thought, this cat does not have a good plan because I need to move my leg. But somehow the interval session stopped for an hour as she curled on my lap, on her favorite blanket. Then I had to dump her so I could get up again.

This morning my physical therapist came and wanted to see if I wanted to work on walking. No, I was exhausted. Of course, the interval sessions stopped in time for me to wake up. I was reminded to stretch. I reminded myself to go back to acupuncture - the main source of help.

But this is part of the recovery that is so difficult. I'm sure God was with me, but I was so focused on this clonus thing that I didn't feel a presence. And so, tonight, I'll ask God to be with me again. Perhaps I'll get lucky and won't have a night like last night. And then, God will perhaps be smiling that he's there to help, no matter what.

Peace.

Boxes

Boxes ... kind of goes with stereotypes. Boxes here, there, and everywhere. I think I need my own box, but probably so does everyone else.

I have MS. When I first got my wheelchair, a neurologist thought I should get a scooter. After talking to my friend, Tom, in Minnesota, I decided to go for the wheelchair. My rehab doctor was supportive. And from that, I've built arm muscles and balance that one couldn't get by pushing a button on a scooter or powerchair. I handcycle and ski. Yet, I continually run into people who wonder why I don't have something with a button. Why would I want a button? I'd lose arm, stomach, and other strength. The "button" is needed for some, but it's an option for me, right now. But somehow, the letters "M - S" lead right to the button - "button box." Include in this everyone thinking we need $5k buttons (those blue, electronic ones) to open all doors. No - just make sure the hinges are loosened enough. It's simple. When there are buttons to doors, I don't usually use them. Most people in wheelchairs don't - ask or watch. Recently, research has shown the importance of exercise for people with MS. So if I use buttons everywhere, exercise is thrown out the window - what's the point?

Another box is "nursing home box." In the hospital, one day after surgery, I was "loopy," weak, and tired. In came the physical therapists for the first of many evaluations to put me in a box. After about 5 minutes, they asked if I would consider going to a nursing home. I wasn't that "loopy" - the answer was no. I said either acute rehab or home health. They responded they would try for acute rehab, but would I consider a nursing home as a second choice. Nope. Either acute rehab or home. I got out of that box and went to acute rehab. But there seems an assumption I've heard - MS recovery = nursing home. Why? 3 days in acute rehab and I was home. Most of that time was spent being evaluated to find another box for me. I think I left before a box was found, or a "Beth box" was invented.

In healthcare, some important concepts are integrated delivery and patient-centered care. Integrated delivery means the whole person is being treated - not just a disease they may have. Patient-centered care means the patient drives their own care, typically with a primary care physician helping coordinate things. Yet, with these 2 concepts, we still make boxes. We assume someone with MS has x, y, and z wrong when it may be only x. Evaluations are done and shock! The person only has x. I'm told only x is not typical of MS. Put another way, y and z are commonly in the box with x. There's complete confusion if they're not. It's this way in society too. Society sees me and thinks x, y, and z. I use a wheelchair. But mostly, I'm happy with life. It's challenging often, but it's a good life. And I'm active.

Research continues to show the benefits of continued therapy and exercise for people with MS. But it does take us out of the old "MS" box. And really, I think God must see some kind of humor in this. It's a bit like, "you did what? But, but, but..." I think God, with a sense of humor, laughs.

We each perhaps have our own box, our own limitations. So can people learn to ask about the person first, before placing the person in some pre-conceived box? Or is this simply too confusing?

Unnecessary junk

Since I've been on leave, I've been getting help with cleaning and getting rid of so much junk in our house. I think we got rid of half of everything in the office, and half of everything in my daughter's room, and the rooms are still packed with, mostly, junk. What intrigues me is that as soon as the old junk is tossed, new junk quickly appears, and I'm spending time trying to toss it before it ends up in a pile.

From where does the new junk come? It's the mail. It's not only snail mail, but email. You would think email might replace snail mail. For our church this seems to have been the case. I get the monthly newsletter by email, and not via snail mail. We have a weekly update via email. I do a monthly contribution directly through our bank, so the church doesn't have to send me a bunch of envelopes for Sunday donations. But others don't do things this way.

I must get at least 3 catalogs in the mail each day - it's a big waste of paper because I "recycle" at least 2 of the 3 without looking at them. Then, I get the same things via email. If I get the information via email, it makes the paper catalogs even more of a waste. And information on email is ridiculous - it seems many places send 1 or 2 emails per day. If I check my email at night, and then again in the morning, it's likely I have 10-15 "junk" emails from retailers. I could switch my email so the junk only goes to 1 account and I might do that. But what I wish is that retailers would get the point - perhaps the church could give a class! (sarcasm)

Send me 1 email a week - that's plenty. If you send me an email, I don't need the catalogs in the mail - this is a huge waste of paper and resources. Are the retailers aware of the rate at which catalogs are tossed or emails are deleted? It seems the advertising would be much more effective if it was minimized.

How does this relate to MS? MS sucks energy. I only have so much energy. Far too much of it is zapped by getting useless things in our recycle bin and deleting emails. I'd like to spend my time reading letters with meaning, and emails with meaning. And if I didn't have MS, I bet I'd feel the same way.

Walking, rolling, and pushing to end MS

"I have good news and I have bad news. The good news is that you don't have a tumor. The bad news is that we think you have multiple sclerosis." Those were the words I heard when diagnosed. In the many years since then, I have changed from a very quiet person, to someone who is willing to express opinions and try to make some tiny difference surrounding first people with MS, and then broadening it to people with disabilities. And many times since those diagnosis words were spoken to me, I have done the MS Walk, first in Minnesota and now for many years in Colorado.

Doing the walk started small as no one really knew I had MS. I would show up and just walk with a friend. In Colorado a few friends joined me and it started to grow. Then I didn't feel like I could walk the whole thing so I decided to stop. I volunteered one year and then stopped for a few years. But people kept asking was I going to do the Walk this year? So, when Lori was 3, the answer changed back to yes. And then I began to wheel instead of walk.

When she was 3, my parents held her between their hands, and she walked a good bit and rode in my lap a bit. At 4 and 5, she was more interested in sitting on my lap and enjoying the ride! It's her way of holding mom's hand. At 6, she had more friends and they would sidetrack an adult to a playground, or something distracting. And this year, at 7, she eagerly told me she wants to wear the shirt and pin to school.

Support grows or changes. I love when people join me for the walk. I love when people send simple good luck messages. I am not one to enjoy raising money, but this is my main cause, so in a way I enjoy it. I enjoy that some people give big donations, but I also love the smallest donations.

The weather varies. This year it was supposed to be cloudy and 30 degrees, but instead was sunny. This year, it was kind of a core team, because all the work I did had to be done from home. This year I was pushed because my shoulder still hurts. And that I hate, because it's really boring to just sit there, even with all the conversation. Patience grows thin - I'm ready to be fully recovered.

We returned home. There was still physical therapy today, and then propping up swollen legs, and doing more exercises. Like every other big event, life strangely continues, as if the event is a blip on the radar screens of only some. But it's big - this year it was beautiful. Ending this post is difficult because efforts to end MS don't end. People continue to live with MS and continue to search for ways to end MS. The post ends and life goes on, but the disease and efforts to end it - they remain.