A Day in the Life with an Autoimmune Disease
The story below is very similar to my wife Ann's journey with Devic's Disease. I share it with you to sensitize you to the struggles that people with autoimmune diseases deal with each and every day.
Kevin Weilacher was on vacation when he developed a rare disorder that left him temporarily paralyzed and anxiously awaiting a diagnosis. He and wife, Liz, just celebrated their eighth wedding anniversary in Niagara Falls. While traveling back to Ohio, the couple stopped to visit Weilacher's mother in Erie, Penn. He awoke at 1 a.m. on an evening in May 2008 with what he thought was a leg cramp. The pain soon spread to his lower back. Within two hours, Weilacher was paralyzed from the waist down. He spent eight days in a Pennsylvania hospital where he received his diagnosis: Transverse myelitis (TM), which is a cousin disorder to multiple sclerosis (MS). Back in Ohio, Weilacher underwent a year of physical therapy. Today, he is able to walk with a cane.
Now he's become an advocate. Weilacher worked with state officials who passed a proclamation dubbing June 6 Transverse Myelitis Awareness Day. He is now working with other states to adopt similar proclamations. So far, six other states have joined the cause to generate awareness. Here are five questions with Kevin Weilacher:
1. What's your typical day like?
It starts usually very early, most days between 3 and 4 a.m. I have trouble sleeping because of the transverse myelitis and how it affects my legs. I wake up because I develop aches and cramps in my legs during the night. My day will consist of the transverse myelitis advocacy programs that I have started. I check my Transverse Myelitis Network website that I helped start with another TM friend. ... Most recently, I've been involved in spreading awareness of the Ohio Transverse Myelitis Awareness Day, which is June 6. Other than my advocacy programs, I taught myself how to do some woodcarving, which has been a godsend for me. It helps me relieve stress and also allows me to focus my mind for a short while, on something other than the pain and discomfort that I am going through.
2. What do you find challenging?
Trying to maintain as normal of a life as possible. Obviously, the disability has changed mine and my wife's life tremendously. It's not a matter of just picking up and leaving to go somewhere, I now have to prepare to be able to go places. I also have days that I am just not able to go anywhere because my symptoms are flaring up. I still try to do some of the basic things, such as housework and dishes but I'm not able to cut the grass or any type of lifting or strenuous activity.
3. What is the best thing about your day?
There are a couple of things. One is the fact that I know I am making a difference in other people's lives, through the advocacy programs that I've started or (that I am) involved in. I get to chat with others from all over the world who also have transverse myelitis, and we are all able to support each other. The other best thing about my day is my wife, Liz. My disability has also affected her and has changed both of our lives and I just feel lucky to have her in my life. She has been amazing through this entire ordeal.
4. What's one thing people would never guess about you?
That I am having pretty intense neuralgic pain each and every day, 24/7. I try to keep a good attitude and almost always will try to have a smile on my face, regardless of how I happen to be feeling that day.
5. What would you change if given the chance?
I would change two things. One, is the fact that most people, and I was included in this prior to transverse myelitis, take things for granted. You take for granted your life, your family, your job, your health and so on, and I am here to tell you that all of it can be turned upside down in a matter of minutes. Be thankful each and every day for what you have. The other thing I would change is that all the little children who are out there that are afflicted with transverse myelitis would not have to suffer with this debilitating disorder. I hope for a cure within their lifetime.