Friday, August 10, 2012

Was It Worth It? Ode to Uncle Bill

I went camping! Or, more accurately, my alter ego, Uncle Bill, as well as my extended family escaped to the Oregon High Cascades for five days to family reune (this should so be a word) and celebrate my brothers 50th. What a week, I never thought I would be able enough to pull off such a feet. And, it is clear that I no longer am. Without the army of folks who cleaned and shopped and packed; the attentive family members who waited on me hand and foot; my right hand hubbie; and my own pig headed stubbornness—it never would have happened.
When the hubbie and I were first together some 26 years ago we camped from a 1969 MGB convertible with a pup tent and a 6-pack cooler. Several years later, he and I and our then 4-year old son took almost a month to camp our way from Alaska to the lower 48 in an old Dodge van; a trip of a lifetime. Now, I need a flotilla of gear just for medical equipment and supplies. A gimps gotta have her commode and substitute hospital bed as well as catheter and copaxone and on and on and on! Little hiccups like keeping meds cold and the chair charged and this and that sterile. A tremendous pile of work.
Was it worth it?
I have to introduce my other MSers to Uncle Bill and give them permission to use him. To explain that some back history is needed. Probably from birth, I am someone who has excelled at and enjoyed planning, organizing, and executing things: from tea parties with friends, science conferences for work,  to 80th birthday parties for my gramps. It was a big part of the career I once had and the role I played in the family. Not in some sort of Martha Stewart matchy matchy way, but more in a desire to bring people together and create notable experiences. It is also something MS has stolen from me. So, I created myself the alter ego of Uncle Bill. He is that kindly bachelor uncle who is good for a laugh, loves to play games, enjoys the kids...but often nods off and naps, is never expected to cook or plan anything and really can't be trusted to pick things at the store. No gathering would be complete without Uncle Bill. Now, when my family gathers, I put on my Uncle Bill hat and consciously set aside my old organizer, planner extraordinaire persona. It's a great way to let others know what I can and can't do and a gentle way for them to remind me when I slip back into my old role. 
At the same time, laying on the chaise lounge, while others flip the flapjacks, cast the line, and hike the trail to see the rare orchid, I have moments of envy and jealousy that burn through me like lightening bolts.
Was it worth it?
Thursday, four days after we came home an MS attack hit with all of the ferociousness it could muster. I have Occipital Neuralgia that pulsess from the back of my head with a white hot band of pain and stabs into my eye. My left arm lost a big chunk of use and my nerve pain ratcheted up to an almost unbearable level. Most scary of all was the precipitous drop in my right lower leg and outside of that foot. The foot is curling under and, to my eyes, it looks something like a preying mantis . Eleven days later and my body seems to have short-circuited and doesn't seem to know how to stop. Of course this episode could be from anything. It could have happened whether I went camping or not. I'll never know.
Was it worth it?
My answer varies from moment to moment and day to day. Our house is still a disaster zone and my body is a mess. But my heart is full of the love from my family and the chance to get back into the mountains and camping that were once such a part of my life. Will I try it again? I do know that just the two of us will probably stick closer to home. I am a lot of show for one man to take on the road.
But if Camping 2012 is to be my wilderness swan song. Then, yes, it was more than worth it.


Judy at Peace Be With You said...

I am here to testiy about the awe I hold for you, for your willingness, for your tenacity, for your spirit which manages to shine despite being tested. You are, indeed, awesome.

Muffie said...

I'll have to adopt your Uncle Bill -- sounds like my kind of guy!

I never camped -- okay one disastrous time. I like Camp Hilton the best!


Kim @ Stuff could... said...

Yes I would say it was worth it! I hope you get some rest