I’ve been crying on and off since my appointment with my reluctant surgeon a couple days ago.
My friend J went with me to the appointment – she usually does to make sure I ask and get answers to all my questions – and even though she had to go back to work, she was kind enough to sit with me for a while afterward to help me process what had happened over a cup of coffee. She was as confused as I still am, and she was sympathetic because she has gone through this with me since the beginning. I’m not sure how I would be coping with all of this without her support. She called later in the day to see how I was doing. She shared some of her thoughts with me and helped me solidify my plan for moving forward.
J isn’t the only person I’ve spoken with since my appointment. Whenever I have an appointment there is a list of people who, if they can’t go with me, I have to talk with about what happened. Everyone was as confused as J and I were. The responses ranged from angered disbelief to calm measured instruction about what I should do next. And the consensus was – as it has been for some time – that the response to my illness has been poor and that my reluctant surgeon may not be the right surgeon for me.
In between these conversations I cried. I’ve been so overwhelmed and distraught that I asked myself an irrational question that pops up when I lose sight of hope: WHY AM I BEING PUNISHED? I know I’ve done nothing to deserve this illness. But at times like this I can’t keep from shouting out to whoever or whatever might be listening out in the universe and asking what I did wrong and how I can fix it. Sadly, no answer ever comes.
No answer ever comes about why there has been so little movement toward making me better and it scares me. It scares me to think that none of the doctors I have seen have enough interest in working to get me better. No answers ever come about whether my reluctant surgeon is right that if I have the surgery it will cause me more harm than good and I will never be pain-free and it scares me. It scares me to think that she is not considering the pain I have now and how it has increased significantly in two years, and how much more it might increase if she does nothing. No answers ever come about why I keep encountering doctors who are so single-minded and unwilling to hear me when I tell them what is happening in my body. It scares me because if I’m in such close proximity to my doctors and they don’t listen to me then why in the world would the universe.
If the universe is listening maybe that’s why I received a call this afternoon from the office of the gynecologist who figured out I was misdiagnosed. He is also the one who has managed my referrals to other doctors and clinics for treatments. His staff heard my distress and squeezed me into a spot to see him next week. My hope is that he will listen to me and help me figure out the next step in untangling the painful mess that is my life.
The Beatles – Across the Universe