Wednesday 9 October 2013

Don't Give Up On My Behalf

I am sick and tired of the negative people, the ones who talk about what I cannot do today, or what I will not be able to do tomorrow. I'm sick and tired of those people who see my life through the lens of disability, future losses and death. I'm sick and tired of those people who would limit what I can do simply because they would not be able to do it in my place.

I am a fully capable, free and strong man with a future. That future is as long as it will be, and will be as full as I can make it. That future will have personal success, financial success, and, with any luck, relationship success. That future will be whatever time my life gives to me, be it long or short. In other words I am a living, breathing, functioning man with a future.

But you have ALS, you say! You're right; I have a diagnosis that clouds and potentially shortens my life. Now look next to you, on either side, as you sit for your coffee. At least one of those people will get diagnosed with cancer in their life, sooner or later. Now look at the other person, the one who won't get cancer. Ask yourself how he or she will die. We talk about living long lives but a friend of mine recently had a relative who died from cancer at age 71. That's not old in modern metrics, but it's only a decade short of the average life span.

What about my friend Juanita who died in February 2011 from pancreatic cancer? What predictor would you have for her death at 56? Yet who would have limited her life? Up until diagnosis, one would never of thought of her as sick or living with a threat over her life. Like her, I have a diagnosis. Like her, I will die. Unlike her I have the pleasure and pain of knowing for many years what my diagnosis is. Like her, I have no idea of what will ultimately end my life.

Don't limit my life simply because you are afraid for your own. Right now I will give you your diagnosis. You are most likely to die from either cancer or heart disease, but in the end something will get you, sooner than you want to go. If you are young, it may happen in the near term or long term. But with each passing day, illness and infirmity move from probable to likely.

Don't give up on my behalf. Just because you don't think you can handle what I can handle, just because you don't want to face what I face daily, just because you don't want to admit to your own infirmity or finality, that does not give you the right or freedom to say what my future looks like. My future is mine; bright, clear, and filled with possibility. Can you say the same? Can you say it with a diagnosis?

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