I think that it's only natural that people feel a need to biologically reproduce. Speaking for myself, I had such a close and meaningful relationship with my own mother that I would have loved to have the opportunity to find it again. I think Nick and I would have made a beautiful child. The hard reality is that that chances of this are physically unlikely.
I had one doctor a few years ago who mapped out the steps that would be taken for pregnancy to have any sort of a chance, which included bed rest from day one with the expectation of scary-early delivery. She seemed to be missing the bigger picture of it all, that as a result of autosomal dominant disease I will have chronic pain for the rest of my life. Autosomal dominant—even if I went through the expenses (time, money, physical) of trying to override nature, how can I in good ethics pass this on to an innocent child?
It's not like all my problems started when I was 24. I've had quirky things wrong with me all my life, and it wasn't until I was 24 that they linked them all together. When I switched HMOs at the beginning of the year, I not only had access to
excellent secondary care (plus a university hospital that has published papers about Currarino Triad based on my mother and myself) and a new doctor to help me understand my reproductive malformations.
My first appointment with her, she came into the room with a notebook, telling me that usually she prints out the files of new patients, but my file was too large so she took notes for the initial visit. She talked to me. She didn't give me the spiel that she thought I wanted to hear. She was interested in Currarino Triad (this is one big difference that I have noticed between the providers in these two HMOs: one set of doctors wants to learn about my disorder while the other prefers to ignore it and proceed as if I were normal) and how if affects me in my day-to-day life.
After three years of a lot of pain, I know that my genetics should not be passed on, and I accept that my body was not meant to bear children. Atop that, I am sick of feeling drugged. Anti-inflammatories, muscle relaxers, narcotics, and hormone therapy—I'm telling you, it gets old. The decision for sterilization sounds simple, but there is a certain finality to it that makes this a very emotional choice. I had my pre-op appointment on Thursday, and I wanted to back out. Even though I see one choice as ethical and the other as selfish, that "selfish", instinctive hold is strong.
Even though Nick, who has already been through so much with me (bless him), has been working long hours at work, he showed up at the clinic when the time for my appointment came. Again, my doctor did not try to talk me into or out of anything, understanding that we have thought this through from every angle and that there is no easy answer.
From the time I started becoming a regular at hospitals and clinics, all of the nurses who knew Mom kept saying, "Thank God your mother didn't live to see this happen to you. She would have blamed herself." I kept thinking, "That's silly. She didn't know she had anything genetic wrong with her when she started her family!" But with me…I would know.
It was a comfort having Nick there, Nick who has agonized with me through the past 3+ years. There is no rationalizing why things happen the way that they do, why one life seems easy while another seems hard. For the longest time, I just thought that I had been lucky for too long and several years of bad luck was my penance. Now I think everyone has something hard in their lives. Maybe they are trying to figure out who they are or where they are going. Maybe they don't have confidence in their own abilities or their ability to learn. Maybe they struggle to show their emotions or allow themselves to feel.
No one is better or worse off, and everyone has difficult decisions. I am fortunate to be pretty okay with me, open with expression, and supported by my loved ones. I am also fortunate to finally have doctors who I trust and who treat me as an individual rather than an average of the patient population. So yes, this is an incredibly hard choice, but I have to remember that I have a lot going for me, and that things have a way of working out for the best.