By Bill Peckham
I was driving, listening to the radio when the conversation touched on (at the 19 minute mark) freedom and the writings of Howard Thurman. I've been thinking about freedom lately. Freedom in the context of dialysis, in the context of home dialysis. Does home dialysis provide freedom? And how so? I think it does, but not in the way it is usually presented.
Often it is the flexibility of managing your own schedule that is said to provide freedom. The freedom to have the room warm and the TV loud while you dialyze. The freedom to set your rules in place of the dialysis unit's rules. Those are not profound freedoms. Thurman spoke of profound freedoms.
The freedom of innocence, the freedom of resignation and the freedom of struggle. Driving along, listening to the radio, I realized these three freedoms sum up my kidney experience. Initially, with working kidneys you have the freedom of innocence. You don't know what you have, you take your kidneys for granted and go about your life. This freedom is illusory, but people, indeed most people, can live long lives enjoying this freedom.
This is the freedom that people with severe kidney disease, with CKD5 miss. When you tell someone on incenter dialysis that you'll get your freedom back with a high dose of dialysis provided at home this is what they hope you mean (someone with a transplant can cover freedom from the transplantor point of view). It is imagined that at home things will be as they were, that they will get back to a freedom of innocence. A high dose dialysis provided at home is a great form of renal replacement but it is still a treatment, it will not let you reclaim your renal innocence.
On dialysis it is the freedom of resignation that is most commonly experienced. Making the best of a bad situation. Thurman quotes a spiritual, "I've been down so long that being down don't bother me." It's acceptance. The acceptance of nausea. The acceptance of low energy; of fuzzy, uremic thinking. There is a freedom in this, indeed I called myself a dialysis success story because I had accepted being on incenter dialysis. I felt liberated by this resignation, free to travel but also free to be self absorbed, free to be disengaged.
Incenter dialysis only took me so far, acceptance could only take me so far. Incenter dialysis left chronic kidney disease draped around me like a wet blanket, smothering dreams and ambition. For a while I sang being down don't bother me because I didn't know I didn't know I wasn't getting enough CKD5 medicine. I didn't know I wasn't getting enough dialysis. I didn't know things could be different. Because I didn't know, I didn't seek out change.
By chance I started dialyzing at home more frequently in September 2001, I started getting a higher dose of dialysis. Since January of this year I have been using the NxStage System One to dialyze over night, sleeping through a process that use to fill my evenings. It is now that I say NxStage has given me my freedom. On this day I give thanks for this freedom.
It is not the freedom of innocence: I'm kept alive by a machine, my innocence is gone. It is not the freedom of acceptance: mere acceptance is no longer acceptable. It is the freedom of struggle. The freedom to struggle. The freedom to take on life. The freedom to work for change. The freedom to carve out a niche in an indifferent world. I like this struggle, the freedom of this struggle. Over night treatments on the System One reduces dialysis to one of life's details, leaving me to engage in the struggle. I am profoundly thankful.
Ok, I saw Howard Thurman, but my brain thought I saw James Thurber and then nothing afterwards made sense, oddly.
Posted by: Tracy Lynn | November 27, 2008 at 10:54 PM
Wonderful post, Bill. I couldn't agree more... and wish I could have said it as well. Hope you had a very healthy and happy Thanskgiving...
Posted by: Kathe LeBeau | November 28, 2008 at 07:44 AM