The people that you meet...

Over the past week or so, during the ADA Symposium or the Brain Injury Employment Conference, I've met so many people. I used to be the person who looked for the person they knew and went to everything with that one person. Now, (ok, IF I'm using my wheelchair) I often find myself looking for a group or table of people who I don't know. It's been interesting! So over the past 2 weeks, here were some interesting people I met... I'm categorizing too - sigh...

* At one breakfast, I sat with a table of guys and 2 of these guys were the cool, athletic types, who had spinal cord injuries (SCI). One asked me what my level of injury is. I think I should start telling people I'm an incomplete (thus I can walk some) T12 because that can end conversations and be somewhat fun. But I said I had MS. Cross that lady out of the conversation! No wait, this lady may have MS and be a slow wheeler, but it's because she had shoulder surgery and the carpet is thick. She ended up with surgery because she's an athlete and didn't know when to take it easy. Well, I never made it into the cool athletic SCI group with these guys, but maybe they'll consider that someone with MS can still be athletic. Perhaps I'm making it up, but I don't think so. Should have video-taped it! It felt a bit like how I didn't quite fit in with the high school athletes, and didn't quite fit in with the high school band geeks either... or the nerds... Ahh... back to high school. STOP.

* At a lunch, I sat with a random mix of people and met each of them, if only briefly. One was using a wheelchair and seemed anorexic. I wanted to reach out to her even though I think that's crossing a boundary since I just met her, but I didn't have the time during the lunch, she quickly disappeared, and I only saw her from a distance after that. Maybe that's a blessing - it wasn't supposed to happen. It's not my struggle to manage, just like I don't want people managing my MS? She ate the salad with no dressing (or croutons!), 1 piece of chicken (after peeling back the fat), the broccoli, no dessert, and a few pieces of fruit. She told me she was skipping the next session and I saw her headed out the door to exercise. I've had trouble with eating in different parts of my life, but I don't think it was the same. I just wonder what's right to do there? And where's her support at home? Does she have it?

* At the same lunch, I met a lady who was diagnosed with lupus when she was 5. We talked about early diagnosis of things, as having definite symptoms of MS at age 17 is very young, and the "but you were so young!" comment that we do not love to hear. Yeah, we know. We were (too) young. So are lots of people with various things.

* Randomly in the hallway I met a "big wig" without any "big wig" kind of attitude who works at the Department of Justice. She uses a chair and has MS. She pointed to how many women are now "out there" with their chairs in life, particularly at this Symposium. She said times of changed - I felt young. I only notice women missing when I do athletic stuff.

* I saw all the friends I knew, of course. One brought my walker into the hotel - it's critical that I have it if I'm going to mostly be in my wheelchair all day. And it's annoying to have to ask someone to go get it, even though they say it's no big deal. Another brought the walker back to my car. And many other friends.

I met many other people and each one was interesting. I was left internally laughing at the jock guys, wondering if God could tell me, what God would tell me to do about the very thin woman who I'll never forget, pausing to think of things that happen to people when "they are too young" while knowing that God is with us at these "too young stages," considering the visibility of people in wheelchairs and how it has changed that I am too young to know, and knowing that I have friends all over the place who are right there to help me when I ask for help and should ask for help, but absolutely hate asking for help. I still want to do things my way. God helps with with that journey, as I stand, fall, ask for help, or am stubborn. Always there, whether I ask or not.

And I meet all these friends, if only briefly, along the way.

Thanks be to God. Peace (especially to the thin woman).

Laughing to tears

Long week! This week I went to the National ADA (Americans with Disabilities Act) Symposium in Denver. It's serious and can be intense, but one day at lunch, we took a break from the serious side of things. The speaker was a comedian, and perhaps the best lesson from the conference was the reminder of the importance of laughter.

* Laughing to tears really makes a person feel much better
* Children laugh much more than adults - we should learn from them
* Different types of laughter - the continuous snort (which we all occasionally do - snort), the silent laugh followed by gasps for breath, and many others
* Laughter and tears are underrated - both make us feel better
* We will fall down in life; laughter is what enables us to get back up (and not just jokes), in whatever sense "to get back up" means
* Complaining leads to all kinds of negative things; laughter (good, not ill-intended) leads to the positive stuff like peace, empathy, patience, forgiveness - these can lead to hope
* Typically many people start their day with their list of things to do - not typically a "happy" list of things. What if we journaled each day the happy parts of the day, even if it sounds corny? In the end, what do we want to remember? It's the good stuff - seek it out

paraphrasing from the speaker (T. Marni Wos) and Christopher Frye:
Humor is an escape. It’s not an escape from reality. It’s certainly not an escape from the truth. But rather it is this narrow escape from despair into hope, into belief that we could all persevere in light of humor, in light of joy. And that laughter is not a vulnerable optimism which it is not. Good laughter, that is a hard won thing; it is a hard won maturity of delight. It’s the laughter that stands in need of an echo.

from an Italian artist: "We are all born part angel with one wing and if we ever hope to fly, we will have to first learn to embrace."

Peace.

Journeys

We are each on our own journey and through these journeys, interact with others, potentially becoming a part of their journey as they become a part of ours. This week I attended a conference on brain injury and employment. There are similarities between brain injury and MS, so people with MS are starting to come to these. I was on a panel talking of my experiences working. I saw some great presentations, met some great people, and saw friends I hadn't seen in awhile. And I learned.

When I talked about the need to consider what to disclose and what not in employment, one guy said he didn't have the energy to filter things like that. I hadn't thought of that - it takes energy and time - it also takes time and energy to develop trust.

The first presenter said that the first thing often asked of people is what they do for a living. Wow. Really? Often I'm first asked why I'm using the wheelchair. And if I do work, people have said "well, I guess you need something to do." They don't know me very well. :) We should all really start with names.

I heard a lot of talk about "the new me." People view themselves as different than before their injury. It's a time for adjustment. I suppose with MS it's a constant adjustment to a new person. Not really a new person - just a person who needs to adapt to something new. And this is not an easy process. I suppose we each go through it every day and then at points it hits us - this is not the way things used to be. This is not the way things were supposed to be. This was not supposed to happen. In most cases, people want the old "me" back.

The circle. A presenter drew a circle. We, the audience, put things that go along with poverty in the circle. It was obvious some were saying things from the standpoint of being middle class. It was obvious some people were there, or had been there - in poverty. When one thing goes wrong in the circle, there's a cascade and everything tumbles. "Do you sometimes feel like you are in that circle?" I do, perhaps in a different way. Everything crumbles.

And then we were lifted. Don't think about what you cannot do. What CAN you do? I said to focus on what you can do, and as much as possible, put the other stuff in the back of your mind. Some miracle stories - one woman was never supposed to talk - she talked. Others never supposed to walk - they walk. Brain injury, like MS, is unpredictable.

There was a strong sense of faith there. Numerous people said they could not manage without faith. It is something many people share.

I'm so thankful for this experience. It was fatiguing, but it was a place to go where I could feel me. No one used the word handicapped. Many people laughed and smiled.

We were community, if only for one day.

Thanks be to God.

"It's the love we remember..."

... "but no one knows where the river flows." (James Hersch)

Today is our wedding anniversary, and is a special day because it is the day that we truly became a family.

People ask how long we have been married.

I say we have been together for 12 years now.

If I say how long we have been married, will people judge us?

If I say how long we have been married will it change how certain people treat us?

If I say how long we have been married, will people make assumptions?

The week before we got married, I remember Pastor Joe, our pastor then, discovering we were going to get married.

I regret not having or asking a pastor who I knew, like Pastor Joe, marry us because I was afraid of being judged. That is my biggest regret.

Fear of judgement, treatment, assumptions.

"Love one another."

No one knows where the river flows.

Dave and I began our relationship 12 years ago.

We became a family when we got married.

But mostly, it's the love throughout the whole 12 years that I remember.

How can this be bad?

When I lived in Minnesota, I dated a guy (note, good thing it ended!) who was from a small town. Once we were going through a drive through. He had this look of being mad all of a sudden on his face, for no reason. He was staring at the car ahead of us. "What's wrong?" I asked. "Do you see _that_?" he replied. So I looked again, not seeing much of anything, but then reconsidering this guy. Oh.......... (in MN the "o" is much more pronounced... I see. There's a black guy - like the ones he says hang out at the Rec Center all day playing basketball and gathering government assistance - he says - it's just they're there when he goes to swim mid-day. And wow - next to him is - gasp - (note sarcasm) - a blond Caucasian! Oh my - we have quite the scandal in rural MN!

I thought this kind of stuff was pretty much non-existent until very recently. And it's a bit intriguing because I grew up in one of those 99% white communities. But I dated someone who was hispanic and someone who was black and didn't think twice about it. And an awesome runner's parents were from Africa - no big deal.

My maid of honor - her parents are from Bangledesh - she married someone here who is Caucasian and of Europpean decent. My boss is Brazilian/Indian. A woman I know is married to someone who is black. They all have beautiful, wonderful kids. My college roommate married someone decended from the Philippines. On and on and on...

So why is this such a big deal? I just don't get it. Some say their kids will have a hard time - I don't see that.

Will we ever really move to acceptance?

unseen

Unseen, mostly, all the improvements I've made since I stopped working full-time on April 12. A lot of research is being done on the benefits of physical activity to MS. And it's true, even if it's unseen. While out, I was told I was standing almost all on my own. It was unseen to me. And now what I have done - the improvements made - I know them - they are most likely unseen to most. But they are important. Maybe others with MS have discovered unseen improvements that help them.

- This morning I looked in the mirror as I did "kicks" from my wheelchair. If I wait, and push my toes back, my legs get almost straight. I didn't think I could kick - I would tell my doctor to skip that test... prior to April 12.

- Squats. I thought I always used my arms only to get up. I started tiny squats. They're bigger now.

- I can't lift into a little "bridge" when lying on my back like most people can. But I'm getting a little closer.

MS is progressive, for me because of incomplete recovery from relapses. So many things, seen and unseen, can be taken from me overnight. They were taken. I got them back, even if they're unseen.

And so I go back. Those who didn't realize I was gone are still commenting on my hair. Those who know I was gone want to know how I am, if I'm getting better. My shoulder still hurts, but not that much - it just needs strength back now. I am getting better, in other ways. I hope it continues. In my world where relapses were getting close to every 5 months, it has now been 8 without a relapse.

It's been quite the ride.

Two steps back, one step forward, looking up - as Michael J. Fox would say, smiling. So I smile, having let go mostly, of the bad ...

I'm moving forward, looking up.

The deck

I love our deck - backs to a ravine - usually quiet.

A place to go and just sit, listening for the sounds of nature...

A deer spots me and jumps the fence to retreat.
The trees swish with the wind.
Birds are nearby singing seemingly to each other.
An owl whoots in the distance.

Momentary interruptions come - a garbage truck, a nearby car.

Shut these sounds out.

Return to nature, the trees, the wind, the birds (further now), the owl.

Return inside to my laptop, work, class, etc.

Moments offered by the deck are priceless. Shut out the "human" sounds. Listen to nature.

Peace.

Different and the same

I'm returning to work post-shoulder surgery. I started half-time from home, then the last 2 weeks half time going into work for 2 of the days. Next week I'm back full-time. I think it's scary somehow - how am I going to do that? My feet are swollen and I spend a good bit of each day sticking them up in the air. Going to work takes a lot of work for me, and I'm used to returning home exhausted. At work I have a routine where I get up at least 5 times a day and "walk the Beth" - so I walk with my walker. Earlier this week I was at work wondering how I was going to do that - perhaps not quite ready. It could be something is happening with my MS right now - strange things are happening with my legs and I'm tired.

Today I sent a quick email to a friend who works in another building, just to say hi. We both have disabilities, but we never talk about those. We always greet each other with smiles. We have fooled even each other into thinking we're always the happiest people on earth!

His email back to me was that work was ok. But (this goes with his disability which is something with a malformed ankle/foot) every step he takes when walking is very painful. I shared with him I had surgery. He then went further because he has had multiple surgeries. He said that when he gets home at night, he is totally exhausted. Unfortunately, he lives alone and doesn't have the support system that I do. But - the same - we are both totally exhausted, in a large part due to our disabilities. And going through the day, if we see each other, we smile like there is no exhaustion! We save it for home.

Next week (good timing Beth - do this right when going back to work), I'm on a panel at a Traumatic Brain Injury (TBI) conference on employment. We have this set of general questions on working with a disability, and I'm trying to think of what to say. Now why is someone with MS on a panel for TBI? There's crossover - fatigue is huge. Wow - it seems it's huge across the board for disability. I talked with someone just before my surgery who was a co-presenter with me for something else on employment for people with disabilities. And we started talking about ... fatigue!

I'm going to be sharing my experiences of employment. I want to encourage, but I want to be honest. Right now, although I can be busy, I'm in a great spot. I'm respected. But it hasn't always been like this. I've experienced discrimination at work. Tell someone I have MS and it opens a whole big can of worms. Assumptions are made that my brain doesn't work. Fatigue is totally missed - it's not discussed. I say I'm tired and the other person says they are too. I get that. Everyone is tired. I'm REALLY tired - I hope I make it through the day. I may be calling my doctor that day because I am tired from MS attacking my body and I'm about to go on steroids. Or it could be a bad day. The other person doesn't know.

What I learned today was that fatigue may be the biggest thing in common for people with disabilities. If each step causes my friend pain, that's exhausting. If another friend with a spinal cord injury has to go on an extra errand, getting the wheelchair in and out of the car causes fatigue. And for me, it's MS underlying almost anything I do that causes fatigue.

And how do we get through this? I suppose it's different for everyone, but maybe I should ask, because maybe it's similar. For me a big part of it is faith. This is hard to explain, so perhaps I'll just leave it there. I believe I am helped in good or bad times, by the presence of God.

Thanks be to God for being there as those of us with different disabilities can learn that in some ways, we are the same.

Trophies

Yesterday my daughter had her first piano recital. She was excited, in part, because she was going to get a trophy (just for being a piano student). She's only been playing since January. At the end of the concert, students came up to get trophies for other things - competitions and such. We got in the car and Lori seemed upset. Why? She only got one trophy. No explanation seemed enough to help her realize how others received their trophies, how she has just started, etc. I think the value of a trophy to her is really nothing - it's just a quantity thing. So many things right now can be the value of quantity for her.

I explained to her my thoughts on trophies. Sure, I've received some. But trophies can be so meaningless. I told her about my senior year in high school. There were 3 big awards with trophies and one was based on athletics plus academics. Chaos. From a reliable source, way after the fact, I found I was supposed to win that one. But there was a parent who thought her daughter should get it. She went to the head of the athletic department, and since she had power, insisted her daughter receive it. And her daughter received it. My mom would never have done that. My mom is a much better mom. So then, what did that trophy mean? Was it important?

I was mad but came to not care that much about it. A funny thing is that people now remember that trophy as the one received because of the mom.

Trophies and awards. Sure, some mean something. But most don't. I internally chuckle when I hear someone or company is applying for themselves to win awards. I've been told it's critical to list awards on my resume.

But awards just don't define me. What I want to define me is not necessarily what I have done that has led to things like trophies, but somehow, what impact there has been on others, and how that can be further taken and used (but not to win awards!). I was reading a piece on "the second death" which, to the author, is what many people fear. It's when generations pass so your name isn't remembered. Perhaps people stop coming to see your grave. But if you made an impact, then that doesn't matter. People forget trophies; people pass away and in the long run perhaps their name is not remembered. But actions leading to good which then create further actions are remembered.

Now how to pass this along to Lori? I asked her last night what the 2 trophies she had received meant to her. She didn't want to talk about it and rolled her eyes. In the end, she liked the piano trophy because she likes her teacher. So I talked about what a person does, the hard work, to get trophies. She's not ready to learn that. It's still a quantity thing.

But someday, hopefully she'll realize it's not the trophies or medals that matter. It's what people put into things, whether they receive a trophy or not, that leads to things downstream - things individuals may not see during their time here.