Tim Joyce, HPN Consumer
Every year the American Society for Parenteral and Enteral Nutrition (ASPEN) holds a Clinical Conference. This year the conference was held in my hometown, Chicago. During the conference, Oley conducts a session in which they introduce clinicians to the patient’s and family’s point of view. It was here that I finally put into words an idea that has been on my mind for some years.
One of the Oley panelists, Ann Weaver, is the mother of a six-year-old boy on homePN due to Hirschsprung’s Disease. His doctors had given up on him at birth, and Ann gave up on the doctors. He now leads a relatively normal life, while she is probably a typical soccer mom. This was one of the points Ann found intriguing: “Why would they want me to give a speech about my normal life? Later on, Kathleen McInnes, an HEN consumer on the panel, also touched on this point.
Perhaps you are now asking yourself, “What do they mean by ‘normal’?” As consumers, we all know the problems we face day in, day out. We know we have to take time out of each day, maybe several times a day, to mix and hang or TPN or enteral formulas. The endless visits to the doctor, the catheter care and strange sleeping arrangements all make our lives very different from that of ‘normal’ people.
For those of you who are caregivers, you see and share in what we go through every day. Add to that the constant worry about your loved one’s health. We know there are days when your ability to empathize has been used up and for two cents you could chuck it all. What could possibly be normal about this situation?
When the speakers broached the topic, I was reminded of a philosophy I’ve been thinking about for some time. I thought that here was an audience who might benefit by hearing it. I hope this meant something to those present and I hope it does to you.
I will, at a moment’s notice, talk to anyone, anywhere, in whatever detail they can handle, about my various afflictions. I am not ashamed of my catheter. Should someone ask about it, I’ll tell them what it is and why I have it. When somebody asks me, “How ya’ doin’?” I may tell them about my sore back or that I’m feeling tired. But I will never tell them that I suffer from Crohn’s disease, aseptic necrosis, arthritis, pseudo-obstruction or any of the other maladies that afflict me. I no more suffer from these than I suffer from thinning hair.
These things are simply conditions I live with. These disorders, all of them, and the challenges they present, have become common place for me. They are the background of my life. I didn’t reach this conclusion overnight. It took six years from the time they sent me home with my first permanent line before I became fully at peace with my lot. Now I’ve learned to live my life around them.
After all, everybody has conditions they live with or, if you will, suffer from. So called normal people suffer from hunger and have to stop three times a day — interrupting whatever they are doing — in order to eat. I don’t have to, although I can. We all suffer from the condition of sleep in which we must stop all activity and lose one third or more of our lives to unconsciousness. Normal people have to stop their lives to go to work. I don’t have to work, although I can and sometimes do. The point is: eating, sleeping and working are all normal activities around which we have created rituals — just as I have rituals for changing my dressing or hanging my bag.
If you’re a patient, my sincere hope is that you are not feeling sorry for yourself. You need to get over it, and get on with living, loving and laughing. If you’re a caregiver, doctor or whatever, don’t see me as “suffering.” I don’t need nor want your pity. A little concern, however, along with a modicum of care and a friendly ear when I need it, will go a long way toward helping me meet the challenges of chronic illness.
So yes! I lead a normal life. In some ways my life is better than many other normal people. It is just a matter of perspective and experience.
Tim Joyce is a Regional Coordinator in Chicago, Illinois, who has 20 years experience with homePN.