“Suggestions for ALS patients and their loved ones:
Without a doubt, an ALS diagnosis is rotten – but so is any diagnosis of a disease that can/will kill you. Rather than dwelling on the negative, however, I have chosen to focus on the positive and I find that I am experiencing a surprisingly happy period of my life. Let me explain.
First, I’ve approached this diagnosis the same way I’ve lived my life: according to the precept that says, ‘There’s nothing either good or bad but thinking makes it so.’ Anything can be seen as good or bad, it’s simply up to you to place a value judgment on it. I decided, for example, to treat myself to a very special trip, something I never would have done without this diagnosis. The trip was wonderful – truly one of the highlights of my life. Thank you, ALS.
I think one of the hardest things about getting any type of dreadful disease is the loss of control one feels. I can’t control the ALS, but I can control how I choose to respond to it. And I choose to be positive.
Second, I don’t waste my energy searching for other diagnoses or some silver bullet that’s going to magically make things better. ALS is a terminal disease and for the time being that’s all there is to it. Dying sucks, but it’s not like it’s a surprise. We’re all born, we all live, we all die. Why should I expect to be any different? I let go of the ‘it’s not fair’ routine. Life isn’t fair and deep down, we all know it.
I choose to use what energy I have on doing things that I enjoy: reading, having lunch with friends, taking short trips (I poop out too quickly now to do anything more than a short jaunt). All my life, I’ve worked very hard and denied myself the chance to do these simple things. Now it’s my time to be good to myself.
I truly do now take time to stop and smell the roses. Well, maybe not the roses, but the sunrises I see from my living room window, the birds hopping around my backyard, and the antics of my cat when she finds a bug in the house. Of course, all these things were taking place before my diagnosis, but I never stopped to pay attention – I was too busy. Now, I sometimes just stand in the window for several minutes in the morning, and give thanks that I’m able to witness such beautiful, shifting colors as the sun comes up.
Third, I’ve been open and honest with my friends about my diagnosis and I’ve been astonished by the support and love that has come back to me. In part, I’m guessing people are responding so positively because I’m not dwelling on the negative and so it’s not hard (yet) to be around me. The payoff, though, is that everyone is being incredibly nice to me. They take me out to lunch. They tell me how great I am, inspirational, etc…
Everyone has to find their own way in life. I can’t advise anyone on what to do, all I can do is say what has worked for me. And for me, I’m finding this stage of the ALS chapter of my life to be a time when I can do what I want and find lots of encouragement from those who care about me. It’s not all bad.
Written by Tamara, Patient diagnosed with ALS
February 2015
