Roll with the Punches

The symptoms of multiple sclerosis can vary greatly from person to person; but there is one universal truth for all MS patients: you wake up in the morning never knowing what to expect! I once read one man's account of how he dealt with it, he said that every morning when he woke he would sit up in bed and do an "MS inventory" before getting up for the day. I know exactly what he means... what is my fatigue level, will I be able to stand on my own, walk on my own? Are my hands working today, etc. etc.

Yesterday I suddenly noticed while getting ready for work in the morning that something was missing. It was that familiar sound of my right foot dragging behind me! To my amazement I discovered that I was able to walk almost completely normally; I was able to make both feet clear the floor as I walked - no more foot drop! I was so excited. I was even able to walk freely around the building where my office is - no walker, no cane. Normally I would not have been able to walk to the Ladies Room, even with my walker. I was giddy with joy as I showed off to my friends and colleagues. One of them even commented that I "looked like a queen" walking down the hall. Yet, I had this nagging feeling that none of them fully shared in my excitement. When I shared my ability to walk with my students, they applauded! THERE was the mirrored emotion I was looking for! I told myself that the subdued excitement from the others was most likely due to the fact that this phenomenon had happened twice before over the last two years; but I really believed this time was different. This newfound freedom even lasted the entire day, not like the other times that were once about 20 minutes, and the other, a couple of hours. This was the real thing. (I hoped.) Of course I overdid myself - walking as much as I was able. It just felt so good. I fell into bed last night, exhausted, but very happy and content.

I awoke about 4:30 this morning very tired but still able to pick my feet up and walk (albeit VERY slowly!) I went back to bed happy with the thought that after a few more hours of sleep I would be able to walk just like the day before. When I finally woke up to face the day I found that I was having difficultly moving my arms and hands, even more than usual. When I got out of bed I was saddened to discover that the foot drop was back and I was having to pull my feet across the floor again. It was as if yesterday had never happened.

While I enjoy these moments of normalcy immensely, and it's so good to know that given ample "juice" my body is still able to function as it should, I almost feel like I am being mocked. A fresh reminder of what has been stolen from me.

Late last year my physical therapist introduced me to an electrical stimulation (E-stim) product called Bioness. It took a bit of tweaking to hit the right nerves and find the right amperage, but with the E-stim I was able to walk without the foot drop. It was very exciting. We worked with the Bioness units for a few weeks, and I was convinced that the best Christmas gift I would receive that year would be the ability to walk normally again. Unfortunately, two days before Christmas Bioness called and I was told that the E-stim units were not covered in my "corporate policy" with Blue Cross. It can be very frustrating to have glimmers of hope that are then snatched away.

I think that one of the best ways to deal with any disappoint in life is to take that event and then put two extra "spins" on it. First, try to find some sort of silver lining or at least a lesson learned; and second add a dash of humor. I would say that the silver lining in being periodically baited with the hope of walking again is that word "hope". At least there is some hope. It may not work out, but at least I can believe the possibility exists. As far as the humor... well, I'll have to think hard about that one! Hmmmm... Can't think of one for me personally, but here is a cute joke. I got it from this website (incidently dedicated to MS patients) that has many good jokes about disabilities http://www.shof.msrcsites.co.uk/disa.html

So, there are these three disabled guys (one is an amputee, one is blind, and one has MS and is in a wheelchair). They are returning home from the Paralympic games in the Middle East and are flying over the Sahara Desert. The plane crashes into the desert, and they are the sole survivors.
After waiting quite a while to be rescued, they finally begin to start working their way across the desert in search of water. The amputee leads the way, and the blind guy pushes the man in the wheelchair. Suddenly they come upon an oasis of water.

The amputee goes into the water first, cools himself down, drinks some water, and then walks out the other side with, lo and behold, a NEW LEG!!!! He is so excited and encourages his friends to do the same.

The blind man offers to help the guy in the wheelchair get into the oasis, but the guy refuses. He stubbornly insists he can push himself; so the blind guy rushes into the oasis, cools off, drinks some water, walks out the other side, and lo and behold, HE CAN SEE!!!

The guy in the wheelchair is now REALLY excited! He pushes with all of his might and wheels himself into the oasis. He cools off, drinks the water, and wheels out the other side. Lo and behold, he has FOUR NEW TIRES!!

Which reminds me, there is something wonderful that is happening today. My mother is taking me to get new batteries for my powerchair! This will help me immensely (see next post for why!) I am very grateful to have family in the area that are able to help me do the things that I cannot.