Massachusetts Support Group
Cindy Walker

My journey with TM began Feb 7, 1995, when I was 14 years old.  It hit me like it does most everyone else that's been afflicted with TM, without warning or hesitation. I was at a dance class and felt what I thought was a pulled muscle in my lower back. The next morning I woke up with no feeling or movement from my belly button down.  My mom called an ambulance and we sat in our local hospital emergency room for 12 hours. Finally, the doctors decided to send me to Children's Hospital in Boston which is a 45-minute drive from where we lived.  I think I was at Children's for seven days before it was determined I had TM. I was told I would never walk again and that we needed to decide where I would complete my inpatient rehab and where I would learn to live life in a wheelchair. 

For a long time I thought that this moment defined who I was. I kept hearing those doctors tell me I would never walk again, and I didn't know what that meant. I had visions of my 20-year-old self, or my 30-year-old self and those visions did not have me wheeling around in a wheelchair.  I had a lot of questions that a lot of doctors and rehab specialists could not answer.  I spent a lot of time trying to rethink my life, trying to envision where this new person and her wheelchair fit in.  I didn't want her here. I didn't want to acknowledge I was "different" or "unique" or "special" or worst of all "disabled." 

My rock in all of this was my mother. She was diagnosed with Diabetes when she was 12, after a misdiagnosis and treatment of seizures. She knew what it was like to live with certain restrictions and limitations. Before she had to retire in 1991 due to her health, she was a Social Worker and was in charge of a division of Mass Rehab in Taunton, MA. She believed in me when I didn't believe in myself.  She said from the start of all this, that instead of dancing I could play wheelchair basketball. She said I would graduate high school and then college and move on with my life. She made me believe that I could do anything.

While I was in rehab our community of family, friends, and strangers came together to transform our home into an accessible house. It was like the show "Extreme Makeover: Home Edition" but without Ty and the TV cameras. A charity event was held in my name to raise money for my expensive hospital stays and expenditures that insurance refused to pay for, calling things like my shower chair a "luxury" item.  Two months after returning home, my mom's health started to deteriorate dramatically. She had always been in and out of hospitals throughout my childhood, but she always bounced back. This time was different. She had her right foot amputated and then her left leg. She had a feeding tube put in, she went blind, and our living room became her bedroom.  People used to ask me why I thought I was paralyzed. I would tell them that a community would not come together for a 40-something year old woman like they did for a 14-year-old girl. Our whole house was outfitted to make my life easier, and now it was all there for her.

My mother passed away at the start of my 2nd semester in college and I tried to hold onto the person she saw in me. I had promised her I'd finish college and move to LA to pursue a career in TV/film, and I did. After graduation my boyfriend and I drove out to LA and I got a job at Paramount Pictures working in the network TV finance department. I was elated that in spite of my disability I was accomplishing these goals we had set together. Unfortunately I carried around a lot of anger and sadness. I missed my mom and needed to hear her words of encouragement. I missed the sounds of her laughter, and I let the words of those doctors telling me I'd never walk again, weigh me down.  After living in LA for four years, I moved back to Massachusetts to try and focus on my life again.

When I meet new people they are curious about why I walk with a crutch and brace. When I tell them about TM, they usually comment on how positive I am. I tell them I was lucky that the paralysis didn't creep higher and that I've regained movement and some feeling in my legs. I can't remember what it feels like to run. I can't remember what my mother's voice sounded like. I can't remember what it feels like to dance, and I can no longer hear my mother's laughter. It feels as though the girl I was never existed and I am finally ready to move on.

The next goal I have set for myself is to enroll in a Master of Social Work program and follow in my mother's footsteps.  I want to help people to believe in themselves like my mother helped me to believe in me. I've learned that I'm bigger than this diagnosis. I've stopped waiting for a cure for TM. For a long time I ignored my disability instead of embracing it. I've come to realize that the person I am is not defined by my physical limitations.

I'm happy to be an open ear to anyone that might need it. I know this diagnosis comes with a lot of questions and very few answers! 

I hope that others of you in Massachusetts are also interested in getting involved.  I look forward to hearing from you.

My email is cwalker@myelitis.org.