"I write songs... Well, they don't come easily. You have to feel inspired. Like the song we're going to do next; I discovered that song in Africa. I was in a country called Guinea. I went deep into the interior of the country, to a little village, and met with a storyteller. That storyteller went way back into African tradition, and African mythology, and he began to tell the story about the fire, which means the sun, about the water, and about the earth. And he pointed out that all of these things together, can turn the world around. And that 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. And 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, we can, turn the world around." (Harry Belafonte, on The Muppets show)
----------------------------------------------------------------------------------------
"Hi Beth. How are you?"
It was an instant message from a friend, Crystal (not her real name), and it was a bit odd - hadn't heard from her lately, although occasionally she asked how I was doing. We worked together when I first returned to Colorado. She is a very sweet, kind person, and I knew she has 3 kids, but she wasn't one to talk a lot about herself. She is a private person.
"Hi Crystal! How are you?!!"
"I'm fine. How are you?"
"I'm great. Pretty recently I started a new drug for MS. It's supposed to help with walking but it's done so much more. It's amazing." (and then I went on and on)... So, how are your kids?"
"They're great." Then she told about her daughter, but not a lot. Her daughter is beautiful - I think she could be a model.
There was little else in that conversation. Not long after that, I saw another friend. This friend asked me, "did you know about Crystal?"
"She sent me a message a while back but what's up?"
"She has a brain tumor. They're going to remove it, but there are spots on her lungs, so they think the spots on the lungs were there first."
My jaw dropped. Crystal - nothing ever went wrong for her. As time went on over the past 2 years, I sent her messages when I would see her logged on. The last time was in November. "You know, I'm just trying to get rid of this stuff. I'm really sick of the whole doctor thing." Could she take time off? No, that was gone. Couldn't people donate their time off? She didn't seem to want that. There was the possibility that she and her husband could go to Hawaii in March. But I don't think that ever happened.
It is strange how as I got better, she got worse. I would ask how was, just as she used to ask how I was. And she still would ask about me, every time we talked, just as she always has. It was almost like a break for her, from her life filled with doctors and treatment. She never smoked either. It just doesn't seem quite right.
As I've dealt with this summer, thinking how ridiculously hot it has been, I've thought about Crystal and wondered how she is doing.
I saw my old boss who is also her good friend recently.
"How is Crystal?"
"It's not good, Beth. She hasn't done chemo in awhile. I think she's trying some experimental stuff."
"Is there anything I can do?"
"No. Honestly she doesn't even seem to want me to do anything."
And that is Crystal. Always listening to others, even amidst all she has in her life.
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"There is no, question, about Jim Henson's great artistry, and the extent to which we have all been touched by it. But greater than his artistry was his humanity, and unless you have moved among the wretched of the earth, unless you have spent countless hours on the reservations of this country..., unless you've moved among those who live in ghettos contained by segregation and deprivation, ..., unless you have sat among tribes who care for children that face an existence of hopelessness, ...,, many have no nope, ... they find their own humanity in the humanity of these creations (muppets), and then you will understand the real gift of Jim Henson and his colleagues. Jim Henson said, 'there is hope, there is joy, there is the ability to love and to care, and to find greatness in, difference...' He (Jim Henson) showed me that there is a greater humanity than I ever knew, with those creatures, those muppets. He challenged me on so many levels, and kept me in touch with my own humanity."
(http://www.youtube.com/watch?v=G9Em3vVwsm0)
~Harry Belafonte at Jim Henson's memorial service.
Crystal has shown it - that ability to hope, find joy, love and care, and find greatness in difference. She's one of the best ones.
Peace.
Friday, August 31, 2012
Wednesday, August 8, 2012
Who I am
A few days ago I was talking with someone on the phone who enthusiastically asked if I was watching the Olympics. Yes, I love the Olympics. My favorites are gymnastics and track and field. I really like watching the 1500, especially if there are Americans in the race. But before I could insert what I love, and before he could ask what I love, he asked what I thought of the guy with the disability who ran. It caught me off-guard a bit, because although I was aware of “that” guy, I hadn’t given him that much thought. And so, I thought back a few weeks…
My daughter took tennis lessons for a week (intro, large class, the basics) for an hour each morning, and though most parents seemed to drop their kids off and come back, or sit to the side and read, text, etc., there's were few of us there, watching the kids, taking pictures, and actually talking to each other.
At that time, I thought I really needed to write about the anniversary of the Americans with Disabilities Act (ADA), and all my opinions on it - positive, negative, and in between. It’s important. The ADA was passed 22 years ago with wide bi-partisan support, but 22 years ago, I didn't know of the ADA. I was in high school, and my life consisted mostly of running and music (though good at academics, I really was more athlete and musician - piano and flute). But, I thought, in a way, I just should write something – it’s such a part of my life.
But one of those mornings in watching tennis lessons, I met another parent who had 2 daughters playing tennis. Somehow we got on the subject of running. He was a late bloomer in running, but he knew everything about it now - who's good in the U.S., and who has a shot at the Olympics. It's distance running - he, like me, ran cross country. We both got involved in the sport by just trying it out, knowing almost nothing about it, and becoming pretty good.
The next morning he was again there and I think we were the only parents who didn't drop off our kids. That day we dove into the past, the past of the Colorado running world, which colleges were good and are good, and who is where today. The dad went to Cherry Creek High School and played a lot of tennis, not running until later in high school. I went to Fort Collins High School (FCHS). Both schools have great running programs and now, traditions. My team at FCHS was the first girls' team to win State cross-country. We weren't supposed to win. The next year we weren't supposed to lose. We got third.
He is 6 years older than me and asked if I knew a guy from FCHS who owned all the records back then. I recalled the name, but then another guy got those records in 1989, and I knew him better. The FCHS boys' team also won State cross-country that year we won. Then one of them, Tim, roomed with Adam Goucher at the University of CO, and this guy knew Adam. Adam was awesome in college and then kept getting injured. He and Tim were/are working on making some video together. Adam's wife is in the Olympics this year - Kara Goucher – she was in the marathon. Lots of new news to me.
Melody Fairchild - my year - she lapped everyone in the 2 mile at State her senior year - she was that good, even in the world. Then she seemed to disappear. Apparently she is coaching somewhere.
We talked about the steeple chase, the marathon, the 1500, the 10,000. We laughed at the decathlon and when the athletes have to run the distance part - they're just not built for it.
Then we talked about kids - how much they run these days, and the possible burn-out... and the burn-out that may occur with each sport because it seems kids have to specialize by age 7 or 8.
There was a lot more that wasn't running, like where people went to college (how he met his wife, what she does), and this somehow looped back to running. Then I got caught up on which schools have been the best for running over the past 20 or so years via why he choose to go to school where he did. Neither of us pursued running scholarships. I went to Kenyon because the cross-country team was so fun (great school, too).
All this was great. I was ready for the Olympics.
As we were leaving, he said "By the way, I'm Dale." Of course, I'm Beth. We never talked about my wheelchair and he never asked. That hit me later – I was the person I have always been, engaging in talking about things I will always love. In a different sense than how it usually occurs (I go to be with people with disabilities, and disability seems to vanish), disability was left somewhere else, while we talked.
When I had the conversation with the other person (on the phone), it was just strange. After we hung up, I was a bit confused. Just because I have a disability, should I be expected to be focused on disability? Because I have a disability, do I always need to be the advocate and write on disability-related things? Or can I go back, and can I focus on the Olympics? That’s what I want to do – almost 2 weeks of Olympics. And then there are times when I want to be with others with disabilities.
I’ve found it’s a bit confusing, but that ok. What’s really important is so simple – I’m Beth, running will always be a part of who I am, and I have a disability. But mainly, I’m just Beth.
Peace.
My daughter took tennis lessons for a week (intro, large class, the basics) for an hour each morning, and though most parents seemed to drop their kids off and come back, or sit to the side and read, text, etc., there's were few of us there, watching the kids, taking pictures, and actually talking to each other.
At that time, I thought I really needed to write about the anniversary of the Americans with Disabilities Act (ADA), and all my opinions on it - positive, negative, and in between. It’s important. The ADA was passed 22 years ago with wide bi-partisan support, but 22 years ago, I didn't know of the ADA. I was in high school, and my life consisted mostly of running and music (though good at academics, I really was more athlete and musician - piano and flute). But, I thought, in a way, I just should write something – it’s such a part of my life.
But one of those mornings in watching tennis lessons, I met another parent who had 2 daughters playing tennis. Somehow we got on the subject of running. He was a late bloomer in running, but he knew everything about it now - who's good in the U.S., and who has a shot at the Olympics. It's distance running - he, like me, ran cross country. We both got involved in the sport by just trying it out, knowing almost nothing about it, and becoming pretty good.
The next morning he was again there and I think we were the only parents who didn't drop off our kids. That day we dove into the past, the past of the Colorado running world, which colleges were good and are good, and who is where today. The dad went to Cherry Creek High School and played a lot of tennis, not running until later in high school. I went to Fort Collins High School (FCHS). Both schools have great running programs and now, traditions. My team at FCHS was the first girls' team to win State cross-country. We weren't supposed to win. The next year we weren't supposed to lose. We got third.
He is 6 years older than me and asked if I knew a guy from FCHS who owned all the records back then. I recalled the name, but then another guy got those records in 1989, and I knew him better. The FCHS boys' team also won State cross-country that year we won. Then one of them, Tim, roomed with Adam Goucher at the University of CO, and this guy knew Adam. Adam was awesome in college and then kept getting injured. He and Tim were/are working on making some video together. Adam's wife is in the Olympics this year - Kara Goucher – she was in the marathon. Lots of new news to me.
Melody Fairchild - my year - she lapped everyone in the 2 mile at State her senior year - she was that good, even in the world. Then she seemed to disappear. Apparently she is coaching somewhere.
We talked about the steeple chase, the marathon, the 1500, the 10,000. We laughed at the decathlon and when the athletes have to run the distance part - they're just not built for it.
Then we talked about kids - how much they run these days, and the possible burn-out... and the burn-out that may occur with each sport because it seems kids have to specialize by age 7 or 8.
There was a lot more that wasn't running, like where people went to college (how he met his wife, what she does), and this somehow looped back to running. Then I got caught up on which schools have been the best for running over the past 20 or so years via why he choose to go to school where he did. Neither of us pursued running scholarships. I went to Kenyon because the cross-country team was so fun (great school, too).
All this was great. I was ready for the Olympics.
As we were leaving, he said "By the way, I'm Dale." Of course, I'm Beth. We never talked about my wheelchair and he never asked. That hit me later – I was the person I have always been, engaging in talking about things I will always love. In a different sense than how it usually occurs (I go to be with people with disabilities, and disability seems to vanish), disability was left somewhere else, while we talked.
When I had the conversation with the other person (on the phone), it was just strange. After we hung up, I was a bit confused. Just because I have a disability, should I be expected to be focused on disability? Because I have a disability, do I always need to be the advocate and write on disability-related things? Or can I go back, and can I focus on the Olympics? That’s what I want to do – almost 2 weeks of Olympics. And then there are times when I want to be with others with disabilities.
I’ve found it’s a bit confusing, but that ok. What’s really important is so simple – I’m Beth, running will always be a part of who I am, and I have a disability. But mainly, I’m just Beth.
Peace.
Friday, August 3, 2012
Family
I just received an issue of a publication on MS that I receive quarterly. It's a national publication, widely read, generally somewhat interesting, and a pretty quick read. This quarter's issue focuses on family.
I thought this should be interesting. So I skimmed the main story, got bothered, thought about it, came back hoping I misread it, and was bothered again. To me, here's what the article basically said. MS is a family disease, where family takes many forms (immediate, extended, friends, neighbors, and so on). When a person gets diagnosed with MS, it's not really a "person with MS." It's a "family with MS." Adjustments are made by family members at all times, as family members other than the person with MS take on increased roles and responsibilities. Even though they do this, they don't want to be labeled as "caregivers." Families want to be involved... they want the neurologist to listen to their opinions at appointments. Whenever something happens to the person with MS, it's a team thing. The family adjusts based on what the person with MS can or cannot do.
So that's the summary. People may wonder what bothered Beth in this. There's a lot of good - there are resources to help families, support groups for families. Families are teams working together.
But what got to me about this article is there seemed to be a split. There are articles on MS. There are articles on people with MS. And there are articles on families of people with MS. What I noticed was it didn't seem that the person with MS is necessarily part of the team, or perhaps that was a sidenote (ie the person with MS should communicate their needs so the family can figure things out). Families are adjusting. These families felt they were doing more, which basically seemed to indicate the person with MS was doing less, and less, and less, as time went on. That may be true in some cases - that the person with MS is doing less. The family team didn't really seem to include the person with MS. It just seemed - is the person who wrote the article part of a family team? Did they see the gaps in this article?
Since I'm a person with MS and am part of a family where the team is everyone - immediate, extended, neighbors, friends, colleagues, church community, anyone I meet... I have thoughts. I was diagnosed with MS when I was single. My parents were in Colorado and I was in Ohio. I went to Kenyon College which served as my family at that time. As a family, we discussed how I could remain involved in running, without running on the team. So I wasn't running but I helped as assistant coach.
Fast forward many years to today. Now my husband, daughter, and I live in Colorado. I have lesions on my spine but not my brain, so MS impairs my ability to walk for the most part, and is exacerbated by heat. So, we all know I can't pack the car for vacations. It's easier for someone to retrieve my walker or wheelchair from the car than for me to do it, but I can do it. Essentially, I'm limited physically. But I'm part of the family and though my husband does the physical stuff, I do many things. I figure out my daughter's extra curricular stuff and there's a ton of it. I may not play soccer with my daughter, but we play plenty of games. And check this out - I work! Unfortunately, the people with MS featured in the article didn't work. Most people with MS do work. So we have 2 parents working full-time, and juggling everything together.
If I get hit with an MS event, which hasn't happened for over 2 years due to Ampyra, I think... well, when something did happen I suppose I would warn everyone to stay clear, I apologize in advance, and I'm going on steroids, an emotional roller coaster.
Beyond my husband, daughter, and me, there's a lot of people who are the "extended family." But I hope they don't feel separated from me, doing things not in conjunction with me. There are awesome people at work who help me when needed, and who cheer me on. At church, people help a lot and because of that, I'm a part of things. It's team-based in that we talk about things as simple as "would you like me to get you some coffee?" (Of course, always!)
I didn't like the article I read. I suppose I've now created my own article on how I think family with MS functions.
There's another thing or 2. Yes, the family is diagnosed with MS, and the family is a team, definitely. But the person with MS - that's who goes to bed with it every night, and that's who wakes up each morning not knowing if they will be able to walk that day. So, the person is diagnosed with MS. This is difficult to explain. No matter how much "team" there is, at the end of the day, it's the person's battle. I think, for me, that can be where faith plays a big part, but since that just hit me, I can't explain the faith connection either.
The last little thing is terminology. So often in these articles and when people talk, they use "dealing with" fill in the blank. Instead of "dealing with," I think we should be "living with." I am, right now, living with a jumpy right leg with a laptop on my lap. It's comical in a way - as the leg starts its spasm, the laptop hops around my lap. The jumping goes for about 6 seconds and then there's a break of about 25 seconds. I live with this a lot. I suppose I "deal with it" too, but then "deal with" seems broadened to the point where we're "dealing with" getting a cup of coffee for Beth. (you should smile here, if you know my coffee addiction!) If you read articles, keep an eye out for that terminology.
Jumpy leg and all, it's time for me to get up and walk to stop the jumpy leg.
In conclusion then, as people know others with MS, consider that MS is a family disease to an extent. It's a family disease where the family, inclusive of the person with MS, lives with MS. And at the end of each day, the person with MS goes to bed alone with the disease. And then I pray, so really, I'm never completely alone.
Peace.
I thought this should be interesting. So I skimmed the main story, got bothered, thought about it, came back hoping I misread it, and was bothered again. To me, here's what the article basically said. MS is a family disease, where family takes many forms (immediate, extended, friends, neighbors, and so on). When a person gets diagnosed with MS, it's not really a "person with MS." It's a "family with MS." Adjustments are made by family members at all times, as family members other than the person with MS take on increased roles and responsibilities. Even though they do this, they don't want to be labeled as "caregivers." Families want to be involved... they want the neurologist to listen to their opinions at appointments. Whenever something happens to the person with MS, it's a team thing. The family adjusts based on what the person with MS can or cannot do.
So that's the summary. People may wonder what bothered Beth in this. There's a lot of good - there are resources to help families, support groups for families. Families are teams working together.
But what got to me about this article is there seemed to be a split. There are articles on MS. There are articles on people with MS. And there are articles on families of people with MS. What I noticed was it didn't seem that the person with MS is necessarily part of the team, or perhaps that was a sidenote (ie the person with MS should communicate their needs so the family can figure things out). Families are adjusting. These families felt they were doing more, which basically seemed to indicate the person with MS was doing less, and less, and less, as time went on. That may be true in some cases - that the person with MS is doing less. The family team didn't really seem to include the person with MS. It just seemed - is the person who wrote the article part of a family team? Did they see the gaps in this article?
Since I'm a person with MS and am part of a family where the team is everyone - immediate, extended, neighbors, friends, colleagues, church community, anyone I meet... I have thoughts. I was diagnosed with MS when I was single. My parents were in Colorado and I was in Ohio. I went to Kenyon College which served as my family at that time. As a family, we discussed how I could remain involved in running, without running on the team. So I wasn't running but I helped as assistant coach.
Fast forward many years to today. Now my husband, daughter, and I live in Colorado. I have lesions on my spine but not my brain, so MS impairs my ability to walk for the most part, and is exacerbated by heat. So, we all know I can't pack the car for vacations. It's easier for someone to retrieve my walker or wheelchair from the car than for me to do it, but I can do it. Essentially, I'm limited physically. But I'm part of the family and though my husband does the physical stuff, I do many things. I figure out my daughter's extra curricular stuff and there's a ton of it. I may not play soccer with my daughter, but we play plenty of games. And check this out - I work! Unfortunately, the people with MS featured in the article didn't work. Most people with MS do work. So we have 2 parents working full-time, and juggling everything together.
If I get hit with an MS event, which hasn't happened for over 2 years due to Ampyra, I think... well, when something did happen I suppose I would warn everyone to stay clear, I apologize in advance, and I'm going on steroids, an emotional roller coaster.
Beyond my husband, daughter, and me, there's a lot of people who are the "extended family." But I hope they don't feel separated from me, doing things not in conjunction with me. There are awesome people at work who help me when needed, and who cheer me on. At church, people help a lot and because of that, I'm a part of things. It's team-based in that we talk about things as simple as "would you like me to get you some coffee?" (Of course, always!)
I didn't like the article I read. I suppose I've now created my own article on how I think family with MS functions.
There's another thing or 2. Yes, the family is diagnosed with MS, and the family is a team, definitely. But the person with MS - that's who goes to bed with it every night, and that's who wakes up each morning not knowing if they will be able to walk that day. So, the person is diagnosed with MS. This is difficult to explain. No matter how much "team" there is, at the end of the day, it's the person's battle. I think, for me, that can be where faith plays a big part, but since that just hit me, I can't explain the faith connection either.
The last little thing is terminology. So often in these articles and when people talk, they use "dealing with" fill in the blank. Instead of "dealing with," I think we should be "living with." I am, right now, living with a jumpy right leg with a laptop on my lap. It's comical in a way - as the leg starts its spasm, the laptop hops around my lap. The jumping goes for about 6 seconds and then there's a break of about 25 seconds. I live with this a lot. I suppose I "deal with it" too, but then "deal with" seems broadened to the point where we're "dealing with" getting a cup of coffee for Beth. (you should smile here, if you know my coffee addiction!) If you read articles, keep an eye out for that terminology.
Jumpy leg and all, it's time for me to get up and walk to stop the jumpy leg.
In conclusion then, as people know others with MS, consider that MS is a family disease to an extent. It's a family disease where the family, inclusive of the person with MS, lives with MS. And at the end of each day, the person with MS goes to bed alone with the disease. And then I pray, so really, I'm never completely alone.
Peace.
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