I read with interest “The slippery slope of assisted dying” (Aug. 21) by Charles Lane. It seems there is always someone who thinks they are a better judge of how other people should live their lives than the people themselves. I take great exception to that, if only for myself.
I have had Crohn’s disease for over 50 years. I was 19 when I first got sick with what I thought was the flu. The next 18 months could be described as a living hell. I went from 120 pounds to fewer than 85. I looked like I was seven or eight months pregnant and couldn’t stand anything touching my abdomen. I was in so much pain, I couldn’t sleep. When I needed to rest I put classical music on the stereo, sat on the couch with pillows behind my back, put my feet up and focused on the music to help me handle the pain.
Knowing that Crohn’s is one of those diseases we don’t talk about, I will only tell you that I was in the bathroom up to 45 times a day and that I had Crohn’s arthritis in my hands, back, knees and hips. My body had consumed all of my fat and was now consuming muscle just to keep me alive.
I had surgery at the Mayo Clinic; all of my large bowel and 2 feet of my small bowel were removed. I was given a Brooke ileostomy. The Crohn’s didn’t go away; I continue to live with it even today. I have had 29 major abdominal surgeries at Mayo and too many minor surgeries to count. The Crohn’s is even in my mouth and throat. I also have glaucoma, kidney disease, liver disease, osteoporosis, and peripheral neuropathy in my hands and feet from a medication I took for my Crohn’s.
I have been on total parenteral nutrition (TPN) for almost 30 years because of short bowel syndrome from all my surgeries. I am fed intravenously through a catheter in my chest. When I started, I was doing it 10 hours each night. For the last nine years, I have done it for 24 hours a day.
But my illness isn’t the whole story of my life. I have been married (twice), have a grown son and three grandchildren, and have worked, traveled and had lots of fun. I have wonderful friends and family. I have had my own stress management business and traveled all over the U.S., England, Wales, Switzerland, Austria, the Netherlands, Italy, Germany and the Bahamas (all while on TPN). I continue to work, play and travel.
I wake up every morning happy to still be alive, and I do as much as I can to contribute something of value to the world around me. A friend and I have just started SBS Cure Project to help fund research into short bowel syndrome.
Obviously, I have fought hard to stay alive. But if the Crohn’s were to become as bad as it was in the beginning and nothing we tried helped — or if I were to be diagnosed with a stage-four cancer — I would not want someone else to tell me what I must do with my life.
I am already being kept alive through artificial means, so I know what it is to fight for the quality of life that many simply take for granted. I also know the cost of that fight for my family. And I don’t just mean financially.
I have a health care directive and confidence that it will be respected. What I fear most is a stroke or coma, after which the TPN can technically keep me alive but even a semblance of normal life is not possible.
I would like to think that I will be allowed to judge for myself when my health problems have become just too much for me to bear. If that time ever comes, I want to decide for myself when to gather my family and friends around me, turn off the TPN, and leave this world on my terms.
I believe I have earned that right.
Elizabeth Tucker, of Lakeville, is president of SBS Cure Project.