Friday, May 3, 2019

My balancing act

   I have gone to the hospital four times in the first four months of this year.  Three of these visits were only to the emergency room, and one, when it turned out I had sepis stemming from an urinary tract infection, resulted in a week-long stay.  Two had to do with my g-tube, and two were occasioned when my urine wasn’t draining through my catheter. 
   No matter how you parse the numbers, this is a sobering, even dubious, record, a lot of visits in not a lot of time.  Indeed, it averages once a month.  I have joked to friends that there should be a room reserved for me in the E.R. 
   It makes sense, then, that I’m struggling more and more with balancing what I call my “medical life” and my “social life.” My medical life include these visits to the hospital as well as various doctor appointments, therapy sessions, having to be turned every 2-3 hours when I’m in bed and to be given water and medications through my g-tube at certain times throughout the day and night and other such things directly pertaining to my body and health.  My social life includes just about everything else and pertains, one might say, to or more to my mind and likely my soul. 
   As I get more and more active, staying up longer in my chair and going out more and doing more things like posting here after 2 years, my medical life feels more and more of a bother, intruding on my social life.  Increasingly, I feel I’m balancing these 2 lives I have, and, increasingly, it’s a real trick. 


  1. I hear and share you frustration, anger, and grief. You've worked very hard for many years to make a life, overcoming numerous obstacles. And you did it! Now, it's as though the unfairness has been turned up to SUPER unfair. You are smart, strong, sensitive, and gifted. And sometimes it seems that's not enough. I don't know how you've been so brave for so long, truly!

  2. I can only say to you John, like I said when we talked and when I told my dad after his back surgery, that if you are in pain you know you are alive. All joking aside, I think the thing to concentrate on is where you are now, a fighter that doesn't give in to prescriptions and worthless opinions of doctors who don't know what to do anyway. I admire your courage and hope you continue in your improving the social aspect of living. I want to get some of the positive life experiences you offer rub off on me and less of the medical detriments although you are struggling as a friend, I think the balancing act you are expressing can be a tightrope without a fall. You are an inspiration to me and the world.