April 26, 2000

This letter has been a long time coming. Please be patient with this long drawn out story! A year ago I was trying to decide if I should continue my education after earning an Associates Degree from our local junior college. The university I would attend was difficult to navigate and the major I wanted to go into was one that I was sure I would be discouraged from trying to earn. Fortunately, Social Workers are the kind of people who like to help people. The head of the department surprised me by telling me that I was perfect for the department within five minutes of meeting me! As we discussed the courses I would take, I brought up my concerns about navigating the campus and before I realized what had happened, she had a former student on the phone and I was talking to her and making an appointment for that very same week. Before the week was over I would be registered for fall classes, I would have a peer counselor, and I would reapply for Vocational Rehabilitation Services. As I said, Social Workers like to help people and they do not fool around when they are able to help someone!

First, my peer counselor. I hope that you and everyone with transverse myelitis have heard of The Centers for Independent Living! I had not until that day and I really could have used these people long before now! The first time I talked to Beth, I knew she was special. She was bright and bubbly and so easy to talk to. When I met Beth for the first time, well, she looked like her voice. Beth has a rare form of muscular dystrophy and uses a wheelchair but that is not the first thing you notice about Beth. Her face reflects everything you hear in her voice. She has very short, gray hair, and she just shines. I don't know how else to explain it. Our first meeting lasted at least two hours. Did I mention that Beth likes to talk? We talked, we laughed, and we cried, and we talked some more. I was exhausted by the intensity and range of the emotions I went through in that two-hour period. We made an appointment for the following week and again a two-hour session with the same results. Now, here I have to mention that I have suffered from depression a few times over the years but the last time was the first time I had been on medication. I truly believe that if I had had someone like Beth from the beginning, I would have had less trouble with depression over the years. Beth had already been through everything that I was going through and I believe it was difficult for her to relive it all, but she did for my sake. Well, maybe for both our sakes. As others that have had a disabling disease, we endured the stares, and rude comments, thoughts unlike "normal" people ever have cross their minds, the struggles just to keep up, and finally, being yelled at for using handicapped parking spaces because we look too young to have a disability! But that was not all Beth did. She helped me realize that by using a wheelchair or scooter, I would become more independent. There were trade-offs to be sure. And then she accompanied me to the wheelchair clinic at my request to be sure I was given the best recommendations possible because I was too emotional to think very clearly.

Beth was also my advocate and encouraged me to reapply to the state's Vocational Rehabilitation Office for assistance in earning my degree. My previous attempt was not what it was supposed to be, but this time I had someone who knew what I was entitled to and counseled me on how to handle unanswered phone calls and one delay after another. As a result, I am now attending the University of West Florida, I am using a scooter, I am getting my tuition and books paid for, and they helped pay for the lift in the van I use and the balance that my insurance did not cover on my scooter. My life compared to a year ago is completely different. For the first time in years, I look up as I "walk" (on my scooter). I don't have to worry about falling anymore! I get from one place to another so fast, it still amazes me. I love my scooter and the freedom it gives me. My grades are great. I love the people. Social Workers are great people but their only fault is that they try to help too much sometimes. I have yet to open a door by myself at school! It's either the automated doors or a fellow student. I have never enjoyed life as much as I do now. I am much more active than I ever thought I would be at this stage of my life. I had thought about the time I would be in this condition. I knew it would happen. I just did not expect it to happen this soon. But, now that it has, I am surprised to find myself enjoying life so much. My daughter, who is nineteen, cannot believe how much I do. I volunteer at The Center for Independent Living of Northwest Florida. I'm also a Board Member. I just finished my junior practicum working 120 hours this semester at Sacred Heart Hospital. I mentor a first grader. Oh, and I go to school full time. This is the time I thought I'd be spending reading, watching TV, just enduring the last few years of my life; and I am so glad it doesn't have to be that way.

The most important part of this whole story though is that Beth knew someone with transverse myelitis and she had your website address. Why is this so important? March 2, 1962, this nine-year-old little girl woke up one morning paralyzed from the waist down. As well as I had recovered and had kept my spirits up, there was always something missing. I thought it was because we were an army family and there was no extended family around for support, but that was only part of it. I did have uncles that came to check on us, even in Germany. We were transferred to Fort Sam Houston, Brooke Hospital in San Antonio, Texas after a couple months and it was there that I found two other people who had transverse myelitis. One person was a woman who had a three-month-old baby and by then they knew she would be paralyzed for the rest of her life. The other person was a young GI. He was just beginning to get some feeling and movement back but I don't know how successful he was. I was lucky. I was able to walk again and I do not have the pain that I've read so much about. I do have the usual bladder dysfunction so many of us have though. Now my deterioration is due to age and the length of time my muscles have worked so hard to help me keep up with the "normal" people. But, last year around this time, I found out that I was not alone. I was shocked by my reaction to finding out that there are so many other people like me. I was so overwhelmed that I could not reach out to anyone or really share how I felt with anyone. I tend to keep my feelings to myself probably because I've felt like I didn't belong, even with my own family (mother, brothers, and sister); I never felt they really understood. They didn't, how could they?

Now, a year later, it was all topped off by the most recent newsletter with your editorial and, again, I could not get over the feelings of having someone who knows how it feels to feel so useless. During my last depression, the only reason I could not contemplate suicide was my children. I simply could not do that to them. Even more than that, though, I have never put into words or read anyone else's words describing how it felt to worry about going out in public and having to worry about gas, because my sphincter does not work properly, or having an accident, which happened all too often as a child in elementary school before all the wonderful products they have now! How many people know what it's like to worry about falling? I don't need a crack in the sidewalk to cause a fall, my own feet will do that! Depression, I don't even want to think about how bad it was, I want to enjoy how good I feel now. Although I am always on guard for those awful symptoms! Your points about needing to talk about all these things are exactly why I want to be a Social Worker. They are exactly why I want to work with children with disabilities so they don't have to go through all this alone. There is a better life out there for people with disabilities. There is happiness to be had and a life to enjoy.

A couple years ago, I took a class in communication and the instructor had us play a game where we would name a person to match the color she named. I took this little test home and did it with my own children. My daughter chose me for the color yellow which really surprised me. When I asked her why she thought I was yellow, she said because I was so sunny and cheerful. Well, my depression had gotten much better, but I felt anything but sunny and cheerful. The way my daughter saw me touched me so much that when I choose the color of my scooter, I chose a bright yellow! It's a reminder to me now not only of how she sees me, but it reminds me to be cheerful. A really nice side affect of the bright yellow is that it makes people feel more comfortable about approaching me. I cannot tell you how many comments I overhear from people who think it's great. I even had a security guard at the hospital stick his thumb out as if hitchhiking.

I hope this hasn't been too long or too boring. What I hope is that people can see that even with a disability, life can be very satisfying. Our attitude makes such a difference. I know it is a struggle to stay UP but it can be done. It may have to begin with medication, but counseling is vital so when you can get off medication, you can stay UP by yourself. Sometimes you have to stay on medication and that's okay too. I can't say that traditional counseling doesn't work, because it does. But at some point, a peer counselor, someone who really knows what you are going through, helps so much more than a regular counselor ever can. I will graduate in a year and I hope I will not have trouble finding a job like most people with disabilities do, but I will not regret any of this time I have spent earning this degree. I truly hope I can repay all the people that have helped me get to where I am today. And I especially want to thank you all for being there and letting me know that I AM NOT ALONE!!

Sincerely,
Darlene Maynard, Pace, FL
Darlene.m[AT SIGN]mindspring.com