playing pretend

Maybe I should start a new blog: Guide to one handed care-giving.  Or maybe Typing in a splint.  Of course I'm not even really quite just one handed. My right thumb and pinky are free, and the other 3 fingers' tips extend over the top of the splint and emerge from the wrapping. But they aren't real useful. For instance there's no way I can put my hair in a ponytail, cut anything, drive stick shift, push (or in our case, pull given the broken front wheel) a wheelchair, clean fingernails (mine or anyone else's), or give shots. Some things I can do but it takes way longer, like buttering toast, cut pills in half, dispense pills, change sheets, clean up after a nosebleed, and don't even ask about helping with colostomy care (not that anyone ever does ask). Some things I asked for help with at first but discovered I can do myself. For instance snapping my jeans because even after 30+ years of marriage I did not need to hear my husband ask- "Are you sure they fit you?" What I find is hardest to be UNable to do is keep my running list of what to do next. I was pretty well paralyzed for a day or 2 without my list. And the camera -no focus control as you can see.
Mostly, truthfully, it is somewhat entertaining to figure out how to use only the left hand with just a little help from the mummy hand. I can, after all, take the darn thing off once a day (for bathing) and I know it's not forever. It probably isn't even for many more days Plus I do get a little sympathy- although naturally not at home. It's like pretend.

True story: When our eldest was 11 an orthopedic surgeon became convinced that the CP was twisting his legs such that unless she did a (follow me closely here) double derotational osteotomy - that would be cutting both femurs and "derotating" them before they were put back together -he would lose all ability to walk even with crutches. The surgery would be every bit as awful as it sounds and require 6 months in a wheel chair with casts and another 6 months "intense" physical therapy (he already had therapy twice a week and we did work with him most days). We went for other opinions. Dorsal rhizotomy anyone (randomly* snipping nerves in the spine)? And one day in the midst of this we walked into our (old, but not because of this) church and there were 3 boys, our son's age and younger, goofing off in the lobby in wheelchairs. It was part of a disability "awareness" program. They were "learning" what it was like to be handicapped. They were doing wheelies. My son had not been asked to participate or told about it -he said, "It's not right".  We went out for a Sunday brunch. Later we were sent a letter of apology -they were very sorry we didn't understand how truly sensitive they all were - and next time we should be sure to address our concerns to the appropriate committee because we had made that committee feel very unappreciated when we went to the pastor and told him how we felt. We knew whoever planned this meant well. We just thought they'd like to know how the only actual physically handicapped member of the church felt.  Silly us.

 We have nothing against pretending. The wisteria may have covered the castle but it's still there, you just have to push the branches aside to peer out.



* it's not done randomly now -but it was then.