D-Day. Diagnosis Day. For me, it was fourteen years ago. I had been diagnosed with Guillain Barre Syndrome when I was a child, and I had grown up with the residual effects that I had learned to accommodate. I was in no way prepared for a different diagnosis, and I remember watching the neurologist’s lips moving as the words came out of his mouth, but not really hearing what he was saying. I believe it was something like, “unusual for someone your age…slowly progressive….will require some lifestyle adjustments…etc.” When his lips quit moving and he sat gentIy smiling at me, I thanked him, grabbed my prescription to go have molds casted for my AFOs (fancy new acronym for leg braces), and drove directly to my library to find everything published about my diagnosis.
I read everything I could find, even the scientific publications that I didn’t understand very well, and learned that I have axonal nerve damage. So, if we compare our nerves to electrical wires or extension cords in our home, the rubber coating is like the myelin sheath and the axon is like the actual wire inside. I found out that I have dead and misfiring wires in my legs, hands, feet, and back. Okay, I could understand that analogy and why my legs were starting to atrophy, but what I just couldn’t accept was the motto for people with my condition: “Use it and you WILL lose it.”
I went into a funk. And, I mean a full-blown, don’t want to face the world funk. Being healthy and active were a major part of my personal identity: I was a nationally certified fitness instructor, I ran 5K and 10K races, I went on 25-100 mile bike rides with my cycling group, and I ate clean and juiced before they were trends. Over the years I noticed that there were things that I couldn’t do that others could, such as stand on my toes or rock back on my feet, and my calves never developed like you would expect for a cyclist, but I chalked all that up to the Guillain Barre Syndrome…no big deal! Those danged “lifestyle changes” my doctor told me about were going to rob me of a big part of my personal identity as well as a lot of my recreational activities. So, I spent a couple of months mourning my previous life and pretty much feeling sorry for myself.
I don’t necessarily believe that it is bad to allow ourselves time to be sad as we process negative news or when bad things happen to us, and I don’t think we need to feel guilty when we do. But, eventually we have to move on. I gradually picked myself up, brushed off my knees, pulled up my big girl pants, made adjustments, and found other activities I enjoy. Do I ever miss aerobic classes and cycling? Of course! Am I happy and fulfilled doing other things? You bet!
If you find yourself in a funk and/or you just have bad days, allow yourself time to have those feelings, but don’t stay in that sad place for too long. Find something or someone to help you work through your feelings. I used a combination of prayer and guided relaxation and meditation tapes, while other people find support groups, private counseling, spiritual counseling, or journalling to be the most helpful. Whatever you do, stay with it and you will find that the adjustments we all eventually have to make in life are much easier to do.
P.S. My diagnosis was post-polio syndrome. I guess I had childhood polio and not Guillain Barre Syndrome…WEIRD!