Thursday, January 31, 2008

If you believe in Fairies, clap your hands.

Kathy, Edith and Mac are heroes. They sat through four hours at the ALS clinic with me (plus blood tests and 2 hours of driving ). A full day! My dear friends took meticulous notes, wrote down everyone’s names while Mac and I endeavored to supply the much-needed jokes.

Upshot: Dr. Miller, who has seen over 1000 ALS patients believes “in his heart of hearts” that the other neurologists are correct and I do have ALS. He is still running me through a battery of tests – lyme etc – which I’ve had twice before but these tests are apparently more involved. I’ll get those results back in 3 weeks or less and still hold out some hope.

The meeting was overall very positive – I’m the ideal patient – young ( no really!), positive ( no really!) huge support network, limb onset rather than symptoms affecting breathing, speaking and swallowing and also early diagnosis which means earlier ingestion of the Rilutek which could buy me as much as 20 months. And my lung capacity is at 108% of normal people! Big ups to singing and yoga!

I will be assessed for orthotics to help me walk and it’s recommended that I start using a walking stick ( I want one like Gandalf but it’d be a hassle to schlep around). I’m also being assessed to see if I can drive again with hand controls instead of foot pedals. This poses a difficult ( for me) question about my Miata: do I spend a ton of money to convert a car that I may have to chuck shortly if the disease progresses rapidly and I am in a wheelchair sooner rather than later? Is it worth the money or do I get a practical car now and adapt it.

Now before I get started on practical cars (cough cough), let me just say that with rare exceptions, the minivan drivers I have met are awesome, inspiring women who are generous and nurturing to a fault – like Wendy Darling from Peter Pan was with the Lost Boys. Taking care of everyone and cheerfully departing from Never-never Land to face the real world. I want to be as thoughtful and wise as them if I grow up.

But I am not Wendy Darling. I am Tinkerbell – a fiercely loyal, sometimes misbehaving brat who needs a small car and room to fly. I like Never-never land because we drive sporty convertibles there and not minivans. Hell, my last apartment was the size of a minivan!

Isn’t it funny how the little things – the car you drive, the shoes you wear – eclipse the gigantic things – like when it’s time to leave the real world for Never-never Land or destinations unknown. I guess it’s because we don’t get to pick when we get there or how we get there, but damn it, if I’m walking there I want it to be in cute shoes and if I’m driving there I want it to be in a sexy convertible.

One thing I do know is that I know how to find Never-never Land. Second star to the right, and straight on until morning. ...

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