Ups and Downs

It's been an interesting month. Yes, it has been a month since I went to the hospital to find out why my legs were failing me. Four weeks ago was my last day of freedom. Since then I have been living with ALS. In the last month, I have been diagnosed, tested, pricked, poked and prodded. It has been a month, and in that month my ALS score has dropped by 1. That's how it works.

I scored a 38 when I completed my FRS profile. The junior neurologist scored me at a 42. The senior neurologist said reality was likely somewhere in the middle of those two scores. A typical ALS patient loses one point per month. Zero is zero. The arithmetic is what it looks like.

I, however, am not a typical ALS patient. You see there is no typical with ALS. I may lose one point a month for a few months and then lose nothing for six months. Or I may lose 2 points a month. Noboby really knows for sure, except they are fairly certain (to about 95%) that I will not see age 65. And even then, they are not sure about that.

So screw them all! I am going to live my life on my own terms. I am going to be who I am, do what I do, go where I go and simply be a force of nature. I will rage against the wind, relish the sunset, shiver in the cold and bask in the warmth. I will say what I think, feel what I feel, and do it all in the way that makes me happy.

Hold it. Doesn't that sound like me just being me?

Over the last month, pretty much everyone has had an opinion on what I should do and how I should manage my feelings and physical needs. Almost everyone has had an opinion on alternative therapies and the possibilities of medical error. Almost everyone has an opinion on some portion, part or parcel of my being. That's tough to deal with.

It's tough to deal with helping everyone else cope with the loss and stress of this disease. I have spent most of the last month comforting others, making others feel safe around me, helping others process this news, helping others cope with their emotions. That's a lot of work and it leads to an awful lot of ups and downs.

Well grow up, folks. This is MY reality. While it may impact you, some terribly and some lightly, I am tired of the ups and downs. Get over it! I have ALS and it is terminal. Now can we simply get back to living, loving, and laughing.

A few, a very few, people in my life ARE helping me process this. Through their love and care, they are listening as I wander through these emotional ups and downs, as I process, verbally as I always do, the feelings, fears and future. The best of these are those who simply listen and say "I understand" or "I get it".

If you want to express true support and love, just be there when I want to talk (or sometimes when I need a hand). Don't advise. Don't suggest. Don't respond. If you really want to help me, listen to me ramble on and when I am done just say "I understand". I will know you really don't, because this is not happening to, just as I cannot understand the true pain of the tragedies in your life. But I can try and you can lie.

I hate the ups and downs. I need all my energy to manage them. I want a smoother ride.