Baseball season

In a different kind of way...

It seems that to have a successful baseball team, a number of different things are needed. You need a coach/manager to coordinate everything. You need a pitcher who not only pitches, but "listens" to the catcher and the rest of the team, because I'm told the catcher really directs things. You definitely need a catcher who can coordinates a lot, and who directly relays messages to the pitcher. And you need a supporting "cast" with an infielder, 3 basepeople, outfielders, and people in the dugout. What happens when things aren't quite right? Can the team still be effective? Can the team still win? What qualifies as winning? What happens when the team is "thrown a curve ball?"

Consider this scenerio. The pitcher is the absolute best as an individual pitcher. He has some tunnel vision, thinks his pitching is all that matters, and in a sense, runs the show, not listening to anyone, really. It's always worked for him - why change now? The catcher has the best intentions, but with a lack of communication with the pitcher, he's a bit stuck in only being able to effectively communicate with other team members.

Oh no! Where's the coach? It doesn't appear there's a coach. The pitcher might have told the coach to go away. That's unfortunate, because there's an upcoming game where a coach is needed.

Well look - here comes the infielder. Someone determined he should show up, but he's not sure how long he'll be there. He'll be there if requests for him continue. The catcher has talked to him, and the catcher effectively has communication with first, second, and third base. But this pitcher and lack of coach seem to be a problem.

Add some outfielders. They are thinking "what if," and they're great, because they've thought of many different scenerios. But they're not in contact with anyone in the infield. Too bad. They have vision. But one outfielder is confused with the whole process. This outfielder can't catch the ball and didn't think you needed to be able to catch to be an outfielder. Hmm... Someone has to catch those flyballs!

Wow. So we need a coach who can get through to the pitcher. The pitcher needs to be more of a team player. The infielder needs more involvement. Without some of this, routine games may indeed be won. But unexpected games - I'm thinking there may be problems.

That's baseball. No, actually that's a comparison I'm making for my shoulder surgery. Different players - can you place where they are in this mix? There's the orthopedic surgeon, the rehabilitation doctor, the physical therapist, the MRI, the durable medical equipment company, the chronic care coordinator, a nurse, another outside physical therapist, and a bunch of people in the dugout asking questions. I'm not sure where I am. I certainly hope they get a coach soon! These are interesting times!

Look Up!

He is risen! He is risen indeed! What a wonderful day - happy Easter!

My best memory ever of Easter is the Easter of my sophomore year in college. It had been a rough fall where my body seemed to be falling apart with no explanation, and then I was diagnosed with MS. But right around the time I was diagnosed, things started to change. My legs started to work better again - a cloud seemed to lift. MS is so unpredictable. I began to run again (and in my senior year, completed a marathon). It was slower running, but it was running, and it was awesome. I remember the smells of spring, the feel of the air against my face, cool mornings, a new appreciation for each day, an appreciation for each time my legs lifted and ran. On Easter that year, before church, on a cool and clear morning, I went and ran up a long hill to a golf course, did a few laps, and returned to campus. Kenyon College is in a very rural area, so getting off campus and running was heaven - being out in nature.

As I ran slowly down the hill from the golf course toward Kenyon, a woman drove by me, window rolled down, and exclaimed "Happy Easter!" A big smile came to my face. I'll never forget the feel of that cool morning breeze and being out in nature. The feel of Easter was all around me. Out there, no one around me, I extended my arms up, circled, and looked up.

I gave thanks to God for being with me through the worst, and also, being with me through the best. That morning was one of the best.

Today I continue to look up, and tomorrow I will be looking up again, for a different reason, because life goes on. You see tomorrow, my high school friend Dorothy is headed into space. So many of her friends will wake up very early to watch the launch, looking up via computers, wishing the best for her. Life has gone on through Lent and goes on now. And I look up, tomorrow for Dorothy. May she have a peaceful journey and return safely. And may God be with her.

Thanks be to God. Alleluiah!

Torn down; lifted by love

I was a sophomore at Kenyon College and something was quite clearly wrong. I couldn't run. I would go watch the cross-country practices and help time intervals. All I could do was watch from the sidelines. This was not right.

After one interval session, we all came up to the dining hall. The team came around me and handed me something, a note. A few years ago I had also visited Earlham College, a small Quaker liberal arts college - one of the 4 colleges I considered. They happened to also be in Kenyon's athletic conference and had noticed that I had disappeared from the running scene. In this small world, the coaches had talked, and the Earlham team, who I had met, sent me this note. They said their thoughts were with me and they wished me the best. It made me cry then and it makes me cry even today. Love one another.

This past summer I was training to handcycle up Vail Pass. I was getting up early to ride. I was exhausted. Work was really difficult. It seemed there was some finger-pointing occurring, and I was somehow a target. So I would come home exhausted.

One day I came home on one of my most exhausted days when I collapse and wonder how we're going to have dinner. That day there was a random letter waiting for me. It was from my high school cross-country coach, who didn't even know about my training for Vail. The card had a picture of a trail, similar to switchbacks we used to run in the mountains. It said "the climb may be steep, but the reward monumental." Tears. I could do Vail (I did Vail!). Good timing. Love one another.

Our family just returned from skiing. Good family time. What is skiing? On my own, that had to be the worst I skied in a few years. There was some ice. I couldn't pull things together. All I could think about was how I needed to not dig my shoulder into the ground, which only seemed to make me dig my shoulder into the ground worse. So I went tethered (always fixes my mental lapses) and did more advanced stuff and had fun. But skiing on my own? No way. Disappointment. Discouragement. My friend Charlie couldn't ski with me either. He wasn't even there the second day and he never said goodbye. What kind of ending is that? It hurt.

I returned home. There was a green envelope on our island, from the ADA (Americans with Disabilities Act) Center. I'm a network leader for them, so I answer questions on the ADA, give presentations, yada, yada, yada. It's this part of my life that I love. But what were they sending me? I opened it. It was a funny card, wishing me well on my surgery. Everyone there had signed it. Guess what? Sniff... yup - tears. Love one another.

If someone sends me something saying hey, if you need help, let me know, I like that - very thoughtful. But these cards - random ones just send to say we care about you - they really hit me. I am reminded that I am loved.

"I give you a new commandment, that you love one another. Just as I have loved you, you should love one another." John 13:34

Thanks be to God.

Contemplating Holy Week

My daughter, Lori, went on a fieldtrip and they walked past a cemetery... last summer. Since then, she sometimes refers to where it is and contemplates death. I let her develop her own thoughts, like this recent car conversation.

"Mommy, did you know that when you die they can burn your body?"
"Yes..."
"Then you can't be buried."
"Yes, you still can, if that is what you want."
(pause)
"Well, I don't want to be burned. Then I can be buried and the angels can just come down and get me, and they don't have to put me back together."
"What do you think the angels look like?"
"They have dresses ... (pause) ... Mommy, what do you think the boy angels wear?"
"I don't know. What do you think?"
"I don't know. Hey Mommy, did you know when you go to Heaven you can be whatever you want? So one day you could be a kitty. And your legs could work! And you could be old or young or whatever you want."

That is some great creativity! I wonder what she will do with the upcoming week, since she has been more intrigued lately.

It's been an interesting Lent. I've made more time to reflect, but it's not enough. I've used a book and I've sat and just thought about things. But I haven't had enough time, or somehow created enough time, the amount of time I wanted. So I'd say this is a distracting Lent. Often it's 9:30 and I'm ready for my alone time and I am just falling asleep because I've gone hard all day, and MS plus shoulder tell me that's it. Then I wake up early and do ok for a bit, before falling back to sleep for a bit!

Distracting. Life goes on. Out in the world, there aren't many mentions of Lent outside of church, aside from giving something up such as pizza. Life has even been a bit distracting within church. I'm struggling with agreeing to disagree. I just don't know if I can do that because I feel like I'm being a hypocrit to a group of people who have meant so much to me, given me so much, helped me so much, and never asked for anything in return. One in this group, who is also a Christian, is even trying to help me reconcile this! But ... distracting. Maybe this week can be different.

We're going on a mini-vacation to the mountains. MS will still be with me, and my shoulder will still feel like bones grinding together and reaching certain ways will cause pain. But many other distractions will be gone. I can leave work at home. There won't be a dance or piano lesson. We won't be doing homework or practicing piano. My mom will be caring for our aging pets. I won't have a list of phone calls to make to set things up. I won't have to think of cooking! This should free some time to just "be." And by taking away the distractions, I bet the MS fatigue goes down, and just "being" isn't accompanied by guilt at looking at a messy house or things not getting done. And thus, whatever faith journey I'm on, maybe there will be time to contemplate more. And there will be more time to listen Lori's ideas. I think there's a lot of insight there - it hasn't all come out yet, but it is coming. Her faith journey. And that then, becomes a part of mine.

"And now, let the weak say I am strong, let the poor say I am rich, because of what the Lord has done for us ... give thanks."

Thanks be to God.

Coloring outside my own lines

When I started this blog/diary, I told myself I didn't want to use it to write about politics - it's about my faith journey and MS. Well, I'm going to color outside my own lines, break my own "rules," and give a couple thoughts. I know people won't agree. But that's the glory of freedom of expression. And this is going to be a rare breaking of my "rules" :)

You see, it's healthcare. We needed to start somewhere. The US bill has some great things in it. It isn't socialized medicine - you can keep your healthcare as you have it now. I actually don't want socialized medicine. I was a baby in England and almost died before my parents added private insurance. My great uncle in Canada died because he did not receive follow-up screening in time. And in England, my blog friend Clare's husband is waiting 2 months for an MRI. That's ridiculous.

Reasons I like the bill:
1) Coverage for pre-existing conditions. Clearly, I have MS. I've had it for over 20 years. I have always been nervous that if I switched jobs, I could lose coverage. I have been lucky. I worked right out of college for the Mayo Clinic (non-profit) and immediately had coverage. After a few years, I moved back to Colorado and began to work for Kaiser Permanente (non-profit) and immediately had coverage. So many people are not that lucky. They may need to choose insurance called "Cover Colorado," designed for the uninsurable. It's incredibly expensive and your pre-existing conditions are still not covered for 6 months. And, interestingly enough, I utilize the system much less than some people without conditions. I am adamant about prevention, and I address any problems I have immediately. But I need coverage. And on the opinion-side, I believe healthcare is a definite right, not a choice.

2) Allowing those to remain on their parents' policies until they are 26. Bingo! There I was, 22, with MS, looking for a job. That's hard enough. Add MS. There was a lot of fear that I wouldn't get health insurance. My parents are incredibly supportive and would do anything to make sure I was covered. This clause would have alleviated a lot of the angst. So this age group is generally healthy. But young people don't know if they may wake up tomorrow and not be able to walk, be taken to the hospital, and diagnosed with MS. It's not predictable - it's a "BAM!" thing. Young people need insurance too.

3) The prescription donut hole. Very important. Take a standard long-term MS drug proven to delay progression of the disease. It's expensive. The first tiny bit is covered under Medicare. Then you're on your own for a few thousand dollars. Well, people on Medicare may be on disability, so they probably don't have a few thousand dollars on hand. So closing the gap is important.

No bill is perfect. But this is a start. And nothing had been started forever. For those who disagree, I understand. But change shoes. Are you healthy? Pretend you're the person diagnosed with MS at age 20. You have your whole life ahead of you. What are you going to do?

Color outside the lines - purposely!

"Disability is not an indicator of health." Disability is also not something that can easily be placed inside a box, wrapped neatly, and tied with a bow. It's also impossible to generalize disability and put it into some defined program, be it for employment, for healthcare, for general living, etc. It's very individualized, even though people with disabilities may find it easier to relate to each other. But you see attempts to package it quite a bit.

So what's a better way to proceed? I think, rather than trying to fit the round peg in the square hole, we learn another concept - that it's ok to color outside the lines. A sermon I heard on "coloring outside the lines" noted how kids at first are encouraged to color wherever, but are eventually taught to color within lines, and according to certain rules. This can be confining. But we can throw those rules out. I'm not a big fan of rules, as they can be too confining.

Disability inclusion in the workplace often "lives" in the land of Human Resources. There people explore ways to address the needs and concerns of those with disabilities who work. People work at workplace inclusion; work on promotion of those with disabilities; know this population is an underleveraged talent pool just yearning to move forward. Most importantly this area must think of talking and listening to those who have disabilities. That is where coloring outside the lines can occur - to listen to that distinct voice of those who live with disabilities each day. I have surprised numerous people by telling them that asking for an accommodation is one of the most emotionally difficult things a person with a disability might have to do, and the person asking may have no idea what they need. I've been there but was lucky to have friends pointing me in the right direction, for both emotional support and to help me determine what I needed. Many people aren't so lucky.

Disability inclusion can "live" in the land of healthcare coordination. But this area wants to explore disability via diagnoses as a means of identification - see the first sentence of this entry - the quote. Think more of coloring outside the lines. Like in the workforce, ways can be explored to address the needs and concerns of those with disabilities who seek medical care. Work on inclusion in the decision-making process; talk with those who have disabilities in the context of care; consider the whole person rather than a diagnosis or condition. Once someone assumed I was off-balance/dizzy due to MS rather than a procedure. I left and fell getting into my car. I tell people not to assume something is related to a diagnosis. Ask the person - it might help them think through a situation.

In whatever context, consider that everyone with a disability is different. I may want to be pushed up a steep hill while my friend may not. On the other hand, I may want to get my wheelchair out of my car myself while my friend may not. On the other hand, if we get a sudden spring snowstorm like tonight, I may have no desire to put my wheelchair back in the car (tonight I finally learned and flagged someone to help, rather than get caught in a dangerous scenario as is my norm).

I do not know all the needs of those who have different disabilities, or even the same, as mine. And just as everyone is different in general, each day, hour, second, or moment is different as well. Everyone has good and bad days. This is amplified for many people with disabilities.

Mostly, I think we, people with disabilities, want out voices heard - not solutions made without asking us. If there's a group setting, and someone raises a question on disability, is someone with a disability is sitting right there? What do they think.? Ask. Always (unless you know they don't want to be asked). It's pretty interesting to watch people jump into something, sitting next to someone who does know a bit more - it happens a lot. Of course everyone should be included, but that includes those both those with and without disabilities.

And I think people with disabilities want to know that people care, not that we're considered a pain. Often I hear the phrase of "dealing with" certain people and our "issues." We need to get past that. Jesus didn't deal with us. Jesus accepted us when others didn't. Jesus accepted so many who weren't accepted by anyone else. I think we could all learn a lot from this. Love each other; embrace disability; see potential; give acceptance. Open it beyond disability - there's so much else out there. Color outside the lines.

Unexpected similarities

At the beginning of each year I have at least 2 or 3 calendars I want to put somewhere. This year, 1 calendar had skiing pictures of Lori and me, so that went right on my desk at work. The second calendar had gorgeous photos from Kenyon College, where I went to college, so that went on a wall at work. The third calendar I got at church and is unique in that, instead of being simply a religious calendar, it emphasizes various service work done by people in the Evangelical Lutheran Church of America. I put this calendar up on the wall and wondered if I would get in trouble, since it is religious.

What has happened is not what I expected at all. I tend to assume people are not religious or don't go to church. But the calendar has been a conversation starter. One woman on my team saw it and we talked about what her church, some offshoot of the ELCA, does for service - that seems to be their emphasis. Then I discovered another person goes to a big ELCA church, and we discussed how/why she and I have switched to the ELCA. Others look at it and are intrigued. So I have discovered that so many more people than I thought are religious, and more people than I thought go to church and it's a big, though mostly unspoken, part of their life. That also is interesting - it's unspoken, yet so important.

Another different similarity, somewhat unexpected, lies in the diverse interest in community service work, and the bonding power such work has. This needs an explanation! This week we kicked off our company's 2010 disability association with our first meeting (yes, it's March - it being this late to start speaks to the economy, really). Last year we started working with other multi-cultural associations the company has - our Veterans association and our GLBT association. I wanted to attempt a new community service "activity" this year which is a bit outside of what our association usually does. Surprisingly, adding this to our agenda seemed to attract a few new people to our meeting to learn more. Also surprising - people said let's not do this alone. Let's work with the Vet and GLBT associations, because they would love to be involved in this. And maybe that will bring other associations with it. Following the meeting, new people were gathering useful statistics and reaching out to other people they knew. So by finding similarities through new potential outreach, we find new energy, and can accomplish so much more.

It's great to see this happening. Things have been working in such silos lately. That isn't the most effective. As we break some of these small silos and learn to work together more, maybe someone will take notice and larger silos will break. We'll all learn what seems so obvious. Harry Belafonte has said it so well: "All of us are here for a very, very short time. In that time that we're here, there really isn't any difference in any of us, if we take time out to understand each other. The question is, do I know who you are? Do you know who I am? Do we care about each other? 'Cause if we do, together we can, turn the world around."

You have to love what he did with the Muppets (http://www.youtube.com/watch?v=PLqb64Pb9So). I think he's right. Let's turn the world around, silo by silo.

Thanks be to God.