April 16, 2010

Reality Check

Posted in Various Reasons ALS Sucks at 6:20 pm by jensalsjourney

So this week I had a visit with my neurologist. I heart him for many reasons, not least of which is that after a year and a half of anxiety and visits with other specialists who had no answers, on my first visit with Dr. K____ he told me right away what he thought was wrong with me. Granted, it was not the answer I wanted — you know when you’re hoping it’s MS that you are in some serious trouble — but at least I finally knew.

He’s a dollface with a wonderful bedside manner, and although he can’t do anything to make me better, he pats my hand, talks kindly to me and tries to make sure I am prepared for everything that’s ahead.

But either he’s really, really proactive or there’s something going on I don’t know about because this week he referred me to Hospice.

Let me say right away that the Hospice nurse wasn’t in the house five minutes before she could see that I was nowhere near ready for their care. But the whole thing was a bit of a wake up call. Because although I honestly believe I’ve accepted my diagnosis, I still live as if my future is unlimited. As much as I’d like to “make every moment count” and all that syrupy nonsense, the truth is that life is still just life, filled with the usual routines, petty annoyances and Monday blahs. Maybe I do sweat the small stuff less, and the good moments are a little sweeter. But living with a terminal illness hasn’t really changed my life — except in the practical sense, in that my body limits me from doing all the things I used to do.

Yet, every once in a while reality pays a call: today, in the form of a lovely nurse who told me to get back in touch when someone tells me I have nine to 12 months to live. That’s when I remember what is at the end of this journey.

The nurse was really nice but I hope I won’t have to call her for a long, long time.

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