Loss of oneself…

August 25, 2007 at 1:17 am

Thanks so much for the beautiful post, or excerpt. Although I have CIDP, I declined very rapidly from a healthy, athletic 48 year old, to a quad in a power chair. It all began on March 27th of 2002, & by April 27th I had lost the ability to walk & also the use of my hands & arms. I would remain in this condition for almost 3 years. I often thought that it would have been easier to handle it if I had had more time to accept my disability, as in the case of most people with CIDP or other autoimmune illnesses such as MS.

How often I would beg my grown children to remember me the way I had always been. I wanted to be remembered as the mother who had taught them to skate, downhill ski, play tennis, etc. After 5 years, I am sure that they do remember all of that, but see me now as I really am. By that I mean that I am still strong, I still run the family, even though I have physical limitations. They still come to me with their problems, or ask my opinions on their life’s decisions. I still have a role to play, it is just different now.

But I still feel useful & needed, especially by my husband. He has now had two back surgeries that limit him physically as well. This is not quite the retirement we imagined as such young ages, but it is still good. We cannot downhill ski, but we can snowmobile. I cannot water-ski, but I can go tubing behind the boat. We will never be able to try golfing, but can still take vacations in the winter where we can swim. It is very similar to when our 3rd child was born disabled & we had to grieve for the healthy child we never got. It was different than raising our other two, but it was still good…