Still a Man

My day typically starts with an assistant getting me sitting up and straight in bed. I have to sleep sitting fairly upright or I start to aspirate my copious drool. It's not the easiest way to sleep but I've adjusted. During the night I slide down a little making the adjustment necessary. The next tasks are getting me fed and clean. Not being able to swallow, I take all my nutrition through a tube directly into my stomach through a hole in my abdomen. Breakfast out of the way we let my meal settle for 30 minutes or so then it's off to the shower, a 100% assisted affair requiring lifts slings and a special shower wheelchair. That is just my morning. I am quite lucky in that I the people who take care of me are kind and patient. Regardless of how good the care is you start to feel like a piece of finicky equipment needing constant attention. It's easy, even for me to forget that no matter how weak I get or how much help I need to get through a day under the patient I am still a man.

A few weeks ago my Mountain bike friends had something of a tribute for me. The big local race series runs from late March to mid June and for the last race of the season they traditionally do a costume contest. One of my friends dug up an old photo of me (complete with my circa 2010 mutton chops) blew it up and made a mask out of it. He borrowed it one of my old Mad Cat jerseys and did the race as me. The race promoter said some very kind words about me to
everyone . A high school team I used to coach gave me an award and said more kind words.  It was a great night and I really enjoyed it. I had complete strangers introducing themselves to me. Like I said, it was a great night. Even in the midst of this I couldn't help feeling like a patient, a victim of a dread disease. A symbol of courage facing the unthinkable as well as someone to feel sorry for. I have to remind myself that behind all that is still a man.

I don't mean to be ungrateful in the least. My friends and caregivers are just plain amazing and I appreciate all that they have done and continue to do. I just feel like I get a little lost in all the stuff this disease brings with it, the real me. The man. As awful as it is this disease really only affects my voluntary muscles. All the things which drove me before are still there screaming to be let out. I am a man, all the flaws, fears, desires, needs, emotions, strength, weakness, the whole package. I am critically sick and need help and compassion but I still reject pity. Be my friend because you like the man I am not because you are trying to be nice to the sick guy. (I'm not saying that has been a problem.) My life is getting pretty "real" lately and I need real friends to match I think I've been relatively lucky in that regard up to now. Above all don't forget this lump of human is still a man,  I'll try to do the same