Suffering

My sister is my only sibling. We were never particularly close as kids. I think illness separates you in that way. One child wishing she was healthy like the carefree one... while the healthy one wishes she was getting all the attention the sick one is receiving. Neither sib wins in a relationship like this.

When my sister was seven years old her pediatrician gave her too large of a dosage of medicine which killed her kidneys. She had seizures, fevers and lost most of her body weight. I still remember the time my parents snuck me in the hospital to see her and all I could see was a skeleton of skin and bones. I shook on the inside from fear, rattling every internal organ to the core. I wanted to shake on the outside but couldn't let my sister see the effect that she had on me. I was only eight but I knew that the fear I was feeling was just something I had to hide from everyone, especially myself. And so I did as if my life depended on it and I never looked back until many years later. By then it was too late. Our relationship would never be what it could have been. Lies/fear stunt its growth.

I also remember the shunt that stuck out of my sisters arm like a curving snake slithering into her arm and disappearing within the two holes that looked red, raw and perpetually oozy. It was her lifeline to a washing machine sized dialysis unit that kept her alive. Back then I gather that it was a somewhat hazardous process. In fact, I remember listening to my parents whisper about someone who had died while connected. I know I went and saw my sister once when she was undergoing treatment and once again I was shook to my core. When I was older I blamed my parents from not being honest about what was happening, from shielding me from all the unpleasantness which created an unpleasant scariness of its own. But now I wonder what they saw when they were looking at me looking at her. Perhaps they were doing me a favor after all.

Anyway, when my sister was eight my mother donated a kidney to my sister. To this day I still don't know if it was her left or her right. I just remember seeing her with stitches going from her front to her back and wondered if she would have been willing to be in all that pain for me for by then I felt so outside of the loop of what we call family. Guilt, fear and pain melded together to create a child who was there on the outside but was long gone on the inside. Always comparing and always coming up short. Funny thing the same thing was going on with my sister yet we really never knew until we were older how much this effected our lives. Time passed. My mother did too. Her gift still living within my sister for a total of 28 years. Then it was my turn to donate something I wanted to do in hopes of somehow evening out our lives and what had become of them. A hope of salvation and redemption for both of us. My husband wasn't so sure. My sister was having mental health issues at the time and he was afraid that she may decided to stop the drugs that would keep her alive. As it turned out a few years later she did just that. When I found out there was only one thing I could say "I gave you a gift and only you can decide what to do with that gift and whatever you decide I will support you." That one sentence spoken from the heart evened out the playing field in my sisters mind. The indebtedness to someone she felt so conflicted about disappeared and we slowly began to repair our relationship. Now ten years later her kidney is once again failing and there is no family to look towards for donation. She refuses to ask her children after spending years worrying about my health and the guilt she would feel if I were to get ill. She is adamant about keeping loved ones out of the process. And so we sit and wait...the clock slowly ticking... to see how long it will take before she needs to go back on dialysis...if she ever chooses to.

Recently, it has come to my attention that my sister may want to forego further medical intervention. For it has come up here and there that heading down that path which leads to a dangerous and confusing medical precipious might not be the one she will decide to take. My father and I were discussing the ramifications of this the other day. My father said that he would support her right to make this choice and would do whatever it took to make sure this choice remained open to her by zealots who might try and implement their religious ideals upon her. However, he said that as much as he would help make sure that these options remained open to her as his daughter it was very painful to think about her deciding that she did not want to walk the path along the dialysis line. And as he said it I replied, "Why because she hadn't suffered enough?"

Why is it, I wondered, that for most of us it appears that there is a certain amount of time that we feel someone must suffer before we can let them go? It's one thing if a freak accident of nature renders our loved one brain dead. For these types of situations most of us can let go saying with all sincerity "they didn't want to live that way. They didn't want to suffer." But let a person decide on their own that they want to opt out of life preserving treatment and for some reason it becomes more difficult to view it in that manner. Somehow when a person makes the decision to die by forgoing treatment it becomes in our minds something akin to suicide and we just can't tolerate that. Instead, we ask that they suffer. Suffer the pain and humility of treatments that render them helpless, hopeless and often in incredible pain. Then and only then do we see their suffering as worthy of death.

I am not sure where we Americans picked up the notion that suffering is admirable, enlightening or an event that provides an opportunity for one to discover a virtue that may have been hidden throughout ones life only to rise up at the end like a butterfly emerging from its cocoon. Why is it so unpalatable to just say no to prolonging the inevitable? At what point does suffering cease to have any meaning? Is it when a person is so drugged up on morphine that they can no longer contemplate their fate or revisit the good and the bad they have caused and its implications? Or does suffering have any true meaning at all? Is it all for show or does it in fact provide the wisdom necessary to complete one's journey?

TO BE CONTINUED