I cannot begin to fathom what it must be like to tell someone that they have ALS. I don't know about other terminal patients but I have a special place in my heart for the man who gave me my terminal diagnosis.
Today, I'm going to talk about my visits with my neurologist, Dr Butros. On my first visit, I went in for my electromyogram (emg). The test is basically torture. The neurologist takes a hypodermic needle with electrical wires hooked to it and stabs every muscle in both of my arms. This test indicates how well the nerves conduct electricity. Unfortunately, due to having a crappy HMO (Health Net), he couldn't discuss his findings with me since an office visit was not authorized at that time. During the first, visit he asked several question and after every answer that I gave he would have a scowl on his face. I would innocently ask if my answer meant something bad (knowing full well it did). He would reply with an answer to calm me. I knew right then that I had to invite this guy to my next poker game (no poker face, I'll get rich)! A month later I go back for the findings. Dr. Butros does a thorough exam and starts to talk to me. "I have thought about you every day since your tests. Has your primary physician discussed your test results with you?" I say no. He sighs and starts to talk about the numbers and he just. can't bring himself to look me in the eye. So I lean toward him, he looks at me and stops talking. I say 'I have ALS!" He slumps, sadly looks at me and says "Yes, you have ALS!" The poem in the picture at the top is about this conversation. It is a very special moment to me since it was the first step to my, for lack of a better term, "illumination." That moment in time will stick with me for the rest of my life. This man broke his steely doctor demeanor and let his guard down to make himself as vulnerable as I was at that moment. I actually found myself comforting him a bit. He then said "If you have ever wanted to do something and were putting it off to a later date, that date is now! Jump out of a plane, travel, become a nude model photographer, anything just do it now!" That hit me like a ton of bricks. I may have three to five years to live but my leg, arm and trunk muscles have far less time. Eleven months later the right arm is gone, the left is very week and I have trouble standing up now. I type on my iPhones notepad app with my thumb.
I cannot begin to fathom what it must be like to tell someone that they have ALS. I don't know about other terminal patients but I have a special place in my heart for the man who gave me my terminal diagnosis.
4 Comments
Larry Gilstrap
4/4/2013 06:40:11 am
Mind if I share?
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Mary Blaustone
4/6/2013 03:02:17 pm
I'm sharing it! Keep writing
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Linda
4/7/2013 03:34:49 pm
Thanks for sharing your story!
Krisanne
4/8/2013 05:47:01 am
Don...
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