I was disabled in 1998 by four failed back surgeries causing nerve damage and constant pain, along with a neuromuscular disease called myasthenia gravis. Between those two things, I can never tell in what shape of strength or pain level I will get up with on a given day. I can never count on getting a full night's sleep either. With the diagnosis of Antiphospholipid Antibody Syndrome (APS) after I had my DVT in 2001, it explained many of the symptoms we had previously attributed to the MG - double vision, etc. When you take all that combined with my short term memory problems from APS, any way you slice it I'm not predictable enough to work. I had a great career and I loved every minute of it (well, almost!) but that part of my life is OVER.

I went through the usual grieving process after I became disabled - I had to learn that the person I was before existed no more. I was still me, but in a changed body. One I didn't like very much. I had to learn that I am who I AM, not what I DO. Once I got my head around that, I learned to appreciate a different way of life and find happiness in it despite a lot of bad times. There are a lot of tradeoffs, good for bad; for example, I am in constant pain but I have time now to do many things that I always wanted to and never had time for before.

A good thing to do when you become disabled is to make some survival ground rules for yourself. They can be anything that works for YOU. The only key is that they must be totally achievable at least 95% of the time, and very realistic.

The rules I made were: 1) I have to take a shower every day and dress; 2) I have to put on makeup; 3) No sitting watching TV during the daytime; and 4) I have to do a minimum of one "productive thing" every day. Now, a lot of days obviously I accomplish a lot more than just one thing. Other days, it is pushing it to find something I can call a "productive thing!" If something big's going on, I may have CNN on in the background all day. But just having the rules in the back of my head has kept me from just shutting down totally on many bad days and kept me from going into a "couch potato" routine.

In addition to the daily rules, I made myself some general guidelines. They are: 1) It is okay to invest in pets, crafts, hobbies, reading, music, any distraction that will keep my mind active and detract focus from pain. 2) It is good to give something back to the universe - sort of a "pay it forward" philosophy. 3) I must keep all doctor appointments and keep prescriptions current, etc. My health is a priority.

Written by Sheila Talley © 2005