It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks. I've had "off" days.
And what else? I haven't been really sick for a year. My husband got a horrendous cold. I got a very small version of it where I felt like sneezing and perhaps sneezed a few more times than I usually would. I did recently get laryngitis and a small "bug" with it, but it didn't last as long as it did for others.
I haven't had attacks, and I have improved. What is still hard for me to see things that are easy for others, but are still difficult or impossible for me, even though I have come so far. It's "functional" stuff - opening doors with ease, without a walker getting in the way. I can sit straight, I can write with a regular pen, I can walk further and faster. Many things are not apparent to others - takes me about half the time to get ready in the morning. Heat still kills me; humidity is even worse - learned this when I visited Ohio recently.
So many people have helped me along this journey. People will say "you are walking faster" and I don't know whether they are saying it to make me feel good, or they really mean it. So I go time myself, and I am walking faster. Just this morning I was sure I had slowed, so I timed myself and I was a bit faster again.
My friends at work who have helped me kick up my legs while sitting (one of my exercises) and have added some leg massage with it have helped. They sometimes need to show me how far I have come. The same people raise the handles of my walker as I improve. It's a small few group of people, but they have helped the journey. I don't tend to name people in this blog, but they may read this and know who they are. Thank you!
I added physical therapy (PT) and was lucky to get an awesome PT. She knows I push myself and she will push me. Some days I show up for PT and I'm mentally exhausted. I just want to give in - throw in the towel. But she, the PT, doesn't let me. She doesn't let me off easy either - she pushes me. She shows me I am still doing well, that I am still getting better. She gives me motivation to keep working over the next week and often it's likely I'll get through the week, but return in the same mentally exhausted state, ready to throw in the towel on everything. She continues to push - she doesn't let me get away with throwing in the towel. When the gait machine is broken, I think I am off the hook, but she finds something else to challenge me, and it's never easy.
So, this past year - one of amazement. 21 years of MS is a lot to reverse. Significant progress made. Those who knew me as a runner would not think I look so good, but I look better. When I doubt, I go prove myself. I'll decide my legs aren't working, but then I almost talk to them - think of them working - and they work. Funny how this works - how many people wonder if their legs will work when they stand? If they did wonder, then they wouldn't have to concentrate on their legs when standing to force their mind to make the connection. My mom even comes with me to the track and has an apple for me, at the ready, as a midway snack through a lap. Yes, one stop now when I walk around the track - down from 6 stops in October. 60 minutes for that lap in October; 32 minutes in May.
I'm so lucky - I have supportive friends and family. Part of this is the church community - there are people there who have pulled me through some of the stress. Ampyra pulls me through, too. I'm ready to stop, but then I take a pill, I feel it kick in, and I am off.
And I'm still slow. People still have to wait for me. But I'm moving more. And I'm thankful to the people who wait, who don't tell me I should stop or that using my wheelchair might still be easier, and using my wheelchair would be faster. I'm thankful to the people who realize it's not about me taking things easier - it's about me pushing, and seeing how hard I can push.
Thanks be to God, for all the good of the past year, for being there through the incredible stress and frustration I have had to keep to myself (mostly, and I haven't wanted to let God into it either), and for being there while I push, push, push - others push - others complement. Thanks be to God. I am loved.
Peace.
Saturday, June 11, 2011
Sunday, June 5, 2011
The Golf Cart
Back at the Kenyon reunion, while extremely fun, I realized how difficult it was be to get around campus with a wheelchair. You don't realize where all the hills are when you walk; you don't realize how big the campus really is; you don't realize that shortcuts you always took as a student don't work the same way with a wheelchair. Enter the golf cart!
There was a slight mix-up when we arrived Thur night and we didn't get the cart until Fri morning. I should say Jenny, my roommate of 3 years, got the golf cart on Fri morning. Then she drove it. Fri night I wheeled to our room from the bookstore. Seemed easier than getting back in the car. Wrong. I remember it was easy to get from the bookstore past 2 dorms to the third. How far could that be? Well, Jenny had all our bags unloaded by the time we found our way. The next morning it seemed it would be easy to get to the dining hall - it must be all downhill since the previous night was all uphill. Wrong again. Half down; the other half up. I was so glad to get the golf cart!
You would also think with 3 rows of seats, there should be room to spare. No. Wheelchair in back; walker, Beth, and backpacks in the middle; Jenny and Lori up front. I held onto the wheelchair. To get in, we developed a system where Jenny would lift my left leg and I would somehow hurl myself onto the seat. And away we would go - soon we were singing the theme from Indiana Jones as we traveled by golf cart. It was humorous. In a strange way, these were the good times.
The golf cart liked to jump when going in reverse, so we would all hold on and wonder, just how much would it jump each time. And which roads could we take this thing on?
Through all the comedy, Jenny was amazing. She would load and unload things. Did I want the wheelchair, walker, or both? The weekend was complicated because I needed to walk, but then I also needed to wheel. And when I walk, I realize there are new obstacles called doors, or curbs, or strange grooves in the sidewalk. I guess I realized that when I'm home, I know more of where these things are. What amazes me is this great walking I have at home is challenged anywhere new. At home I know where to use my wheelchair and where to use my walker. Somewhere new, I need both. At home I think I even know which buildings are easier, and even which bathrooms work. Somewhere new, I have to figure it out - is a door too heavy? If there's one of those buttons to open a door, will the door stay open long enough. So for all the times Jenny loaded and unloaded everything, lifted my leg and hoped I made it - well, that's when you know you have a great friend.
We had to return the golf cart. That was a bit sad. I mean, we had so much fun! We got places. Life was good.
Peace.
There was a slight mix-up when we arrived Thur night and we didn't get the cart until Fri morning. I should say Jenny, my roommate of 3 years, got the golf cart on Fri morning. Then she drove it. Fri night I wheeled to our room from the bookstore. Seemed easier than getting back in the car. Wrong. I remember it was easy to get from the bookstore past 2 dorms to the third. How far could that be? Well, Jenny had all our bags unloaded by the time we found our way. The next morning it seemed it would be easy to get to the dining hall - it must be all downhill since the previous night was all uphill. Wrong again. Half down; the other half up. I was so glad to get the golf cart!
You would also think with 3 rows of seats, there should be room to spare. No. Wheelchair in back; walker, Beth, and backpacks in the middle; Jenny and Lori up front. I held onto the wheelchair. To get in, we developed a system where Jenny would lift my left leg and I would somehow hurl myself onto the seat. And away we would go - soon we were singing the theme from Indiana Jones as we traveled by golf cart. It was humorous. In a strange way, these were the good times.
The golf cart liked to jump when going in reverse, so we would all hold on and wonder, just how much would it jump each time. And which roads could we take this thing on?
Through all the comedy, Jenny was amazing. She would load and unload things. Did I want the wheelchair, walker, or both? The weekend was complicated because I needed to walk, but then I also needed to wheel. And when I walk, I realize there are new obstacles called doors, or curbs, or strange grooves in the sidewalk. I guess I realized that when I'm home, I know more of where these things are. What amazes me is this great walking I have at home is challenged anywhere new. At home I know where to use my wheelchair and where to use my walker. Somewhere new, I need both. At home I think I even know which buildings are easier, and even which bathrooms work. Somewhere new, I have to figure it out - is a door too heavy? If there's one of those buttons to open a door, will the door stay open long enough. So for all the times Jenny loaded and unloaded everything, lifted my leg and hoped I made it - well, that's when you know you have a great friend.
We had to return the golf cart. That was a bit sad. I mean, we had so much fun! We got places. Life was good.
Peace.
Thursday, June 2, 2011
Ain't Got Time to Die
This past weekend I went back to Kenyon College (which I love!) and got to be a part of the Chamber Singers reunion. It's acapella. Going back was a unique experience I loved. I was captured and didn't want to let go. I could feel the music become a part of me, my voice blending with those of about 90 others (including my daughter's!), a feeling of music at the very core of who I am. I have always loved music - it has always been at the core of who I am. But I haven't felt these feelings for so long. Music taken in, joined with others, and then shared with an audience of other alumni from Kenyon College, and people from the local community - it was incredible. In a moment, in so many moments...
Simple warm-ups from college - the favorite of hip-o (1), hip-o (2), hipohhhhhhh (1)... and variations... Ming-ee-ah ... ming a ming a ming a ming a ming... love those.
The concert - when it all came together for me. The most simple brilliance of using a music stand to hold music allowed me to concentrate on the music.
And the concert... (some of it)
Palestrina's Circut Cervus ... (so my soul longs for you oh God)
Erb's Shenandoah ... "Oh Shenandoah, I long to see you ... away, I'm bound away..."
http://www.youtube.com/watch?v=xjZ0SRD5EOs&feature=related
(imagine women's parts)
so beautiful and gripping.
Farmer's Fair Phyllis
The (short) song is about a man searching for his lover. But I'll never forget during rehearsal, the 2 toddlers released, one boy and one girl - the boy chasing the girl. They never "fell a kissing" as in the song, but I laughed s hard I couldn't sing this during rehearsal. During the concert, I somehow pulled it together.
http://www.youtube.com/watch?v=A3yy_ZT_e64&feature=related
Ralph Vaughan Williams - Loch Lomond
2 soldiers are captured in battle. The enemy decides to let one go but the other will die. The high road is to heaven. The music sways; I am taken as if in the middle of a conversation...
Oh, ye'll tak' the high road, and I'll tak' the low road,
And I'll be in Scotland afore ye;
But me and my true love will never meet again
On the bonnie, bonnie banks o' Loch Lomond.
After I graduated, "Doc Locke" started teaching some songs from South Africa. I never understood the intrigue until I returned this time and learned them.
Together, as a choir, we sway...
Khumalo's "Bawo, Thixo Somandla" and "Umgwagwa"
http://www.youtube.com/watch?v=G90l_3q2qi4
Berteau's "Shilohini"
I get it now - you don't learn these pieces - you feel them - you bond with others and move together.
Spirituals are always near the end of each concert...
Deep River...
I want to cross over into campground.
where campground is heaven. And to begin this piece on the word "Deep," is done with the note F (ok, perfect pitch must be part of this for me) which has a certain swell to it that only that note can do... and I am gripped... closing in peace, crossing "over into campground."
But then we transition to "Ain't Got Time to Die." This is upbeat. A slave is doing all these things - ain't no time to die. "Workin for my Master" could have a double-meaning of working for a slave owner, but really it's working for God. "NOW GET OUTTA MY WAY! I'm praising my Jesus. Outta my way! I'm praising my Lord... Ain't got time to die." In a different setting, I would have waved my hands in the air. I'm engaged in this piece with incredible joy and intent - more than when I was a student - the song pulls my faith into me while simultaneously letting me sing it out.
http://www.youtube.com/watch?v=gQr9JTCpZW4
And then we come back to Kenyon, where in Locke's "Height of This Hill" (poem by an alum) we learn, we keep learning, we find answers, answers, answers, as we go through life, but we find them from the hill upon which sits Kenyon. Later, "remember Beth, it's them, not you, is one of those answers I find."
And we end with tradition, and the Kokosing Farewell, where we sway like a river and recall that we will never forget Kenyon. Kokosing is the river running next to the hill where Kenyon sits. Watch the video (from 1:40). That's Doc Locke. He has everyone's attention. You can't see it, but he's making eye contact with everyone, individually. He may be smiling at them. It's unique - you just don't get this every day; in fact, I've only had it at Kenyon. And the song - always brings tears to my eyes.
http://www.youtube.com/watch?v=O_ErGDb99Ps
Old Kenyon we are like Kokosing
Obedient to some strange spell
Which urges us from all reposing
Farewell old Kenyon, fare thee well.
And yet we are not like Kokosing
Which bareth not upon its swell
But foam of motion's own composing
Farewell old Kenyon, fare thee well.
But when we are far from Kokosing
we still shall hear a calling bell.
When round us evening shades are closing
Farewell old Kenyon, fare thee well.
And see a river like Kokosing
in meadows sweet with asphodell
where memories dwell dear past supposing
Farewell old Kenyon, fare thee well.
Simple warm-ups from college - the favorite of hip-o (1), hip-o (2), hipohhhhhhh (1)... and variations... Ming-ee-ah ... ming a ming a ming a ming a ming... love those.
The concert - when it all came together for me. The most simple brilliance of using a music stand to hold music allowed me to concentrate on the music.
And the concert... (some of it)
Palestrina's Circut Cervus ... (so my soul longs for you oh God)
Erb's Shenandoah ... "Oh Shenandoah, I long to see you ... away, I'm bound away..."
http://www.youtube.com/watch?v=xjZ0SRD5EOs&feature=related
(imagine women's parts)
so beautiful and gripping.
Farmer's Fair Phyllis
The (short) song is about a man searching for his lover. But I'll never forget during rehearsal, the 2 toddlers released, one boy and one girl - the boy chasing the girl. They never "fell a kissing" as in the song, but I laughed s hard I couldn't sing this during rehearsal. During the concert, I somehow pulled it together.
http://www.youtube.com/watch?v=A3yy_ZT_e64&feature=related
Ralph Vaughan Williams - Loch Lomond
2 soldiers are captured in battle. The enemy decides to let one go but the other will die. The high road is to heaven. The music sways; I am taken as if in the middle of a conversation...
Oh, ye'll tak' the high road, and I'll tak' the low road,
And I'll be in Scotland afore ye;
But me and my true love will never meet again
On the bonnie, bonnie banks o' Loch Lomond.
After I graduated, "Doc Locke" started teaching some songs from South Africa. I never understood the intrigue until I returned this time and learned them.
Together, as a choir, we sway...
Khumalo's "Bawo, Thixo Somandla" and "Umgwagwa"
http://www.youtube.com/watch?v=G90l_3q2qi4
Berteau's "Shilohini"
I get it now - you don't learn these pieces - you feel them - you bond with others and move together.
Spirituals are always near the end of each concert...
Deep River...
I want to cross over into campground.
where campground is heaven. And to begin this piece on the word "Deep," is done with the note F (ok, perfect pitch must be part of this for me) which has a certain swell to it that only that note can do... and I am gripped... closing in peace, crossing "over into campground."
But then we transition to "Ain't Got Time to Die." This is upbeat. A slave is doing all these things - ain't no time to die. "Workin for my Master" could have a double-meaning of working for a slave owner, but really it's working for God. "NOW GET OUTTA MY WAY! I'm praising my Jesus. Outta my way! I'm praising my Lord... Ain't got time to die." In a different setting, I would have waved my hands in the air. I'm engaged in this piece with incredible joy and intent - more than when I was a student - the song pulls my faith into me while simultaneously letting me sing it out.
http://www.youtube.com/watch?v=gQr9JTCpZW4
And then we come back to Kenyon, where in Locke's "Height of This Hill" (poem by an alum) we learn, we keep learning, we find answers, answers, answers, as we go through life, but we find them from the hill upon which sits Kenyon. Later, "remember Beth, it's them, not you, is one of those answers I find."
And we end with tradition, and the Kokosing Farewell, where we sway like a river and recall that we will never forget Kenyon. Kokosing is the river running next to the hill where Kenyon sits. Watch the video (from 1:40). That's Doc Locke. He has everyone's attention. You can't see it, but he's making eye contact with everyone, individually. He may be smiling at them. It's unique - you just don't get this every day; in fact, I've only had it at Kenyon. And the song - always brings tears to my eyes.
http://www.youtube.com/watch?v=O_ErGDb99Ps
Old Kenyon we are like Kokosing
Obedient to some strange spell
Which urges us from all reposing
Farewell old Kenyon, fare thee well.
And yet we are not like Kokosing
Which bareth not upon its swell
But foam of motion's own composing
Farewell old Kenyon, fare thee well.
But when we are far from Kokosing
we still shall hear a calling bell.
When round us evening shades are closing
Farewell old Kenyon, fare thee well.
And see a river like Kokosing
in meadows sweet with asphodell
where memories dwell dear past supposing
Farewell old Kenyon, fare thee well.
Thursday, May 19, 2011
Beyond the walls
I was exiting a building the other day and saw a very diverse group of people... different races/ethnicities, some disabilities... I thought wow, now this is really a neat thing - a bunch of diversity and I'm surrounded by it. Too bad I was late (as usual) to get somewhere.
But before I left someone said, "yes, all these homeless people were just waiting here for their bus and no one knew what to do with them."
They seemed fine to me - much like any other person coming or leaving the building.
Another time, in a different building, I was using my walker and it was too hot and it was a bit too far. Everyone seemed to leave. In this "borderline" part of town, there was a woman, her baby, and a man. They definitely didn't look rich. But they were the ones who helped me get my walker in the car. Everyone else I knew had left.
One last example - I left an appointment. I was the last of the day, it was at least 85 degrees, and it was the end of the day. The people I saw at the appointment were still inside the building. A lady got off a bus and helped me with my wheelchair. Again, definitely not rich.
Inside many church walls there are food drives. I bring food, someone gives the food out to people, or the church may donate food. Certainly some people volunteer to serve meals or volunteer for Habitat for Humanity. They may go on mission trips to help people and they may be briefly immersed in that culture.
But what I wonder is, what happens in day-to-day life? Maybe I'm biased/naive and think the people in general, in my church, would embrace diversity rather than make snide comments about people who may, or may not be, homeless. Maybe the people I saw the other day weren't homeless but just didn't have much money. But I know some of the people who make comments and judge a bit - I know these people go to church.
Do they keep their giving inside the walls of church? Do they think they've done their bit by giving a couple cans?
I bet there are times when I also judge. But wouldn't it be neat if we took what we do inside the church walls and applied it to day-to-day life? I think we'd realize there is a lot of beauty out there.
Those people waiting for a bus? They were actually invited to the building to give their input on something. I doubt they were all homeless, but does that matter?
Peace.
But before I left someone said, "yes, all these homeless people were just waiting here for their bus and no one knew what to do with them."
They seemed fine to me - much like any other person coming or leaving the building.
Another time, in a different building, I was using my walker and it was too hot and it was a bit too far. Everyone seemed to leave. In this "borderline" part of town, there was a woman, her baby, and a man. They definitely didn't look rich. But they were the ones who helped me get my walker in the car. Everyone else I knew had left.
One last example - I left an appointment. I was the last of the day, it was at least 85 degrees, and it was the end of the day. The people I saw at the appointment were still inside the building. A lady got off a bus and helped me with my wheelchair. Again, definitely not rich.
Inside many church walls there are food drives. I bring food, someone gives the food out to people, or the church may donate food. Certainly some people volunteer to serve meals or volunteer for Habitat for Humanity. They may go on mission trips to help people and they may be briefly immersed in that culture.
But what I wonder is, what happens in day-to-day life? Maybe I'm biased/naive and think the people in general, in my church, would embrace diversity rather than make snide comments about people who may, or may not be, homeless. Maybe the people I saw the other day weren't homeless but just didn't have much money. But I know some of the people who make comments and judge a bit - I know these people go to church.
Do they keep their giving inside the walls of church? Do they think they've done their bit by giving a couple cans?
I bet there are times when I also judge. But wouldn't it be neat if we took what we do inside the church walls and applied it to day-to-day life? I think we'd realize there is a lot of beauty out there.
Those people waiting for a bus? They were actually invited to the building to give their input on something. I doubt they were all homeless, but does that matter?
Peace.
Sunday, May 15, 2011
Stamina
MS Walk/Roll/Combo recap, in a way...
Family and friends who came - they are the best.
How strange is to bring the walker in addition to having the wheelchair?
And there was the Ampyra tent - it was swamped - the place to be.
That was exciting.
Telling a person working what a wonder it has been - all the positive things.
And he said...
"Does it help your stamina?"
Yes, that's it - stamina!
I walk better, faster - everything is different now.
That's pretty amazing, faster, better, keeping going because
Most days I don't feel like eating until about 4pm.
I have trouble sleeping - I have bad leg spasms.
The stress of the last month has been incredible
and I have to keep it to myself
but it has hurt.
It would normally cause an MS attack,
as continually be "slammed to the floor"
by various things which I can't control
does that.
I've had the pre-attack fatigue where I go to bed early.
But Ampyra kicks in for my legs
and I wake up to a new day.
I can walk further,
I can withstand the insomnia.
But mostly, I have the stamina to somehow take the
boom, boom, boom nature of life, from everywhere
pop a pill, and I'm back.
It's been 11 months since an attack.
On that beautiful day, slightly cool, bright sun,
surrounded by family, friends, and all the others who were there.
We came together as community.
It's beautiful.
I wish this beauty could be transferred.
Peace.
Family and friends who came - they are the best.
How strange is to bring the walker in addition to having the wheelchair?
And there was the Ampyra tent - it was swamped - the place to be.
That was exciting.
Telling a person working what a wonder it has been - all the positive things.
And he said...
"Does it help your stamina?"
Yes, that's it - stamina!
I walk better, faster - everything is different now.
That's pretty amazing, faster, better, keeping going because
Most days I don't feel like eating until about 4pm.
I have trouble sleeping - I have bad leg spasms.
The stress of the last month has been incredible
and I have to keep it to myself
but it has hurt.
It would normally cause an MS attack,
as continually be "slammed to the floor"
by various things which I can't control
does that.
I've had the pre-attack fatigue where I go to bed early.
But Ampyra kicks in for my legs
and I wake up to a new day.
I can walk further,
I can withstand the insomnia.
But mostly, I have the stamina to somehow take the
boom, boom, boom nature of life, from everywhere
pop a pill, and I'm back.
It's been 11 months since an attack.
On that beautiful day, slightly cool, bright sun,
surrounded by family, friends, and all the others who were there.
We came together as community.
It's beautiful.
I wish this beauty could be transferred.
Peace.
Monday, May 9, 2011
Minimization
I was taking a diversity class last week - supposed to be an overview while at the same time going deep, all within 4 hours.
We introduced ourselves and told a memorable experience related to diversity. We talked about things like some people are ok standing close to people while other people are not; some people are "touchy-feely" while others are not.
We were told about the different stages of being "culturally competent." In the middle is this stage called minimization. That's when you take someone of one type of diversity and make comparisons, so supposedly you are minimizing their diversity. I find that interesting - it's as if we want to leave people in their categories. On the other hand I suppose if someone told me they know what it's like to be in a wheelchair because they spent a week in one then yes, that's minimizing it.
We did an exercise where we watched a well known video from the late 60s where the teacher split the class into blue eyed kids and brown eyed kids. Then one group was treated badly for a day and the next day they switched. Then you are supposed to see how behavior changes and how people can act.
Then we got to the section on white privilege. There was a paper with 30 questions like whether you had to worry when pulled over because of a person's race. On that questionnaire, some questions didn't specify race, so maybe I felt different due to disability. Then we started discussing and I pointed out that while someone of a certain race might feel uncomfortable in a given situation, so might I, because of disability, which is isolating. I was told that we couldn't discuss this because we were talking about white privilege. I suppose I was minimizing things. But the problem as I see it is, we never talked about disability and how that changes things. And a big difference is, after I go to a place and feel different, I go home and though I love my family, they don't have disabilities. Is that a double whammy?
We ended with a brief exercise where we did get to talk about how people with disabilities have things they might not have elsewhere. What?!! Ummmm.. But we were in small groups by then (other small groups talked about other diverse groups), and no one in the group talking about disability had a disability. So they came up with accessible parking spots being present and one other thing I forget. Both of these are required by law - definitely not extras. I think that's minimization.
But go back to comparisons. I don't know what it's like to be a different race. But I do know that disability crosses race and other things. When we did the MS Walk on Saturday this was quite clear. Beautiful day. Wonderful family and friends. Community - all fighting the same thing.
But back to a harsh reality. Disability is most often very unique. I'm the only one in my house who has MS. No matter how much I am loved, no matter how much support I have, it's still MS. At the end of the day, when I go to bed, I'm alone with it. And there is where God can be found.
Peace.
We introduced ourselves and told a memorable experience related to diversity. We talked about things like some people are ok standing close to people while other people are not; some people are "touchy-feely" while others are not.
We were told about the different stages of being "culturally competent." In the middle is this stage called minimization. That's when you take someone of one type of diversity and make comparisons, so supposedly you are minimizing their diversity. I find that interesting - it's as if we want to leave people in their categories. On the other hand I suppose if someone told me they know what it's like to be in a wheelchair because they spent a week in one then yes, that's minimizing it.
We did an exercise where we watched a well known video from the late 60s where the teacher split the class into blue eyed kids and brown eyed kids. Then one group was treated badly for a day and the next day they switched. Then you are supposed to see how behavior changes and how people can act.
Then we got to the section on white privilege. There was a paper with 30 questions like whether you had to worry when pulled over because of a person's race. On that questionnaire, some questions didn't specify race, so maybe I felt different due to disability. Then we started discussing and I pointed out that while someone of a certain race might feel uncomfortable in a given situation, so might I, because of disability, which is isolating. I was told that we couldn't discuss this because we were talking about white privilege. I suppose I was minimizing things. But the problem as I see it is, we never talked about disability and how that changes things. And a big difference is, after I go to a place and feel different, I go home and though I love my family, they don't have disabilities. Is that a double whammy?
We ended with a brief exercise where we did get to talk about how people with disabilities have things they might not have elsewhere. What?!! Ummmm.. But we were in small groups by then (other small groups talked about other diverse groups), and no one in the group talking about disability had a disability. So they came up with accessible parking spots being present and one other thing I forget. Both of these are required by law - definitely not extras. I think that's minimization.
But go back to comparisons. I don't know what it's like to be a different race. But I do know that disability crosses race and other things. When we did the MS Walk on Saturday this was quite clear. Beautiful day. Wonderful family and friends. Community - all fighting the same thing.
But back to a harsh reality. Disability is most often very unique. I'm the only one in my house who has MS. No matter how much I am loved, no matter how much support I have, it's still MS. At the end of the day, when I go to bed, I'm alone with it. And there is where God can be found.
Peace.
Sunday, May 1, 2011
Trust
Kenyon College has something called an honor code. The honor code is important - it means that you are on your honor to be honest. This seems so simple. It allows a professor to leave while students take exams, or for professors to send take-home exams where students do not discuss the exams with each other. I'm sure a few abuse it, but I wasn't one. Having this system develops trust at many levels. Students tell the truth; faculty tell the truth.
In society, we don't have this trust in so many places - in fact, we have a lack of trust. It can be complex and throw a person off if they are used to the honor code - trust model. Tied into this, in some manner, is difference. Where there is difference there can be discrimination. Discrimination creates a lack of trust. Lack of trust then grows - from those discriminating (whether they know it or not) to those discriminated against. This is a complicated sense of dynamics. I'm going to throw into the mix "parallel worlds." So with discrimination, lack of trust, and parallel worlds, this is a strange blog and let's see how it goes. I know people may not agree with it or understand it, but it's reality to me.
Obama's birth certificate - please don't moan. Keep reading... I know we've all heard too much of it, from whatever point of view you have. Here comes my point of view. No other president has had to provide so much proof. Of course we all provide birth certificates. But nothing has ever been good enough for Obama's. I think the long form, recently submitted, was the fourth or fifth piece of evidence. And I've already received 2 emails on how it isn't good enough either and of course someone altered it, to. Nothing will ever be good enough. No matter how much proof there is, it's never good enough and it's like starting over. And that, to me, is discrimination - proving oneself over and over and over and over ... and having to start again and go through the same process, when others don't have to do the same.
I'm not Obama by any means, but I know about this continual proving of oneself and it never being good enough. I don't have to prove my birth certificate. I have to prove other things. Despite how many people tell me how inspirational I am, I am still proving. It happens again and again and again, in multiple areas of life (not all, but multiple). I follow the instructions of everyone - A through Z - but it seems my A through Z is not 26 steps. There's an A1, a B1 - it depends on what it is but there are always extra steps. And it's never good enough - like the submission of Obama's long form, somehow I may have to go back to step 1. To me, again, this is discrimination. Discrimination is having to continually prove oneself, again and again, when others don't have to do the same thing.
I have been told that when some people learn to drive, part of learning is knowing they may be pulled over because of their race, and they must be ready for what to do when this happens. I worry if I am pulled over that the hand controls will put me in a questionable status - can she drive. If there's an accident, what happens? Who is to blame? Accidents frighten me in a different way than others.
And so we get to trust. Knowing I have to prove myself again and again, in many different areas of life, and that it often doesn't seem to matter, my trust level is pretty low. The fact that others do not trust all the proof given leads me to think they have no trust. This occurs for different categories - that word I hate - of people.
The question is how to get past this. We have so much legislation. So much training is provided. Because of this, many people think everything is fine and that there are no problems.
To really get past this, there has to be a culture shift. Trust has to change, for everyone.
I'm sure Kenyon isn't perfect, but it's something. So I'm back at Kenyon. I'm not sure how to define the culture there, but it seems to work better. So there must be something I'm missing.
In the meantime, I'll keep trying to prove myself. I know the majority of people who read this will probably be surprised at this (that I am continually proving myself all over the place in my life and getting nowhere with it), but the ones reading this know me and aren't the people wanting proof. That means there is hope that proof will get through to others someday.
Peace.
In society, we don't have this trust in so many places - in fact, we have a lack of trust. It can be complex and throw a person off if they are used to the honor code - trust model. Tied into this, in some manner, is difference. Where there is difference there can be discrimination. Discrimination creates a lack of trust. Lack of trust then grows - from those discriminating (whether they know it or not) to those discriminated against. This is a complicated sense of dynamics. I'm going to throw into the mix "parallel worlds." So with discrimination, lack of trust, and parallel worlds, this is a strange blog and let's see how it goes. I know people may not agree with it or understand it, but it's reality to me.
Obama's birth certificate - please don't moan. Keep reading... I know we've all heard too much of it, from whatever point of view you have. Here comes my point of view. No other president has had to provide so much proof. Of course we all provide birth certificates. But nothing has ever been good enough for Obama's. I think the long form, recently submitted, was the fourth or fifth piece of evidence. And I've already received 2 emails on how it isn't good enough either and of course someone altered it, to. Nothing will ever be good enough. No matter how much proof there is, it's never good enough and it's like starting over. And that, to me, is discrimination - proving oneself over and over and over and over ... and having to start again and go through the same process, when others don't have to do the same.
I'm not Obama by any means, but I know about this continual proving of oneself and it never being good enough. I don't have to prove my birth certificate. I have to prove other things. Despite how many people tell me how inspirational I am, I am still proving. It happens again and again and again, in multiple areas of life (not all, but multiple). I follow the instructions of everyone - A through Z - but it seems my A through Z is not 26 steps. There's an A1, a B1 - it depends on what it is but there are always extra steps. And it's never good enough - like the submission of Obama's long form, somehow I may have to go back to step 1. To me, again, this is discrimination. Discrimination is having to continually prove oneself, again and again, when others don't have to do the same thing.
I have been told that when some people learn to drive, part of learning is knowing they may be pulled over because of their race, and they must be ready for what to do when this happens. I worry if I am pulled over that the hand controls will put me in a questionable status - can she drive. If there's an accident, what happens? Who is to blame? Accidents frighten me in a different way than others.
And so we get to trust. Knowing I have to prove myself again and again, in many different areas of life, and that it often doesn't seem to matter, my trust level is pretty low. The fact that others do not trust all the proof given leads me to think they have no trust. This occurs for different categories - that word I hate - of people.
The question is how to get past this. We have so much legislation. So much training is provided. Because of this, many people think everything is fine and that there are no problems.
To really get past this, there has to be a culture shift. Trust has to change, for everyone.
I'm sure Kenyon isn't perfect, but it's something. So I'm back at Kenyon. I'm not sure how to define the culture there, but it seems to work better. So there must be something I'm missing.
In the meantime, I'll keep trying to prove myself. I know the majority of people who read this will probably be surprised at this (that I am continually proving myself all over the place in my life and getting nowhere with it), but the ones reading this know me and aren't the people wanting proof. That means there is hope that proof will get through to others someday.
Peace.
Subscribe to:
Posts (Atom)