Wednesday, June 29, 2016

Empathy is not always EZ.

I participate in a Facebook-based support group for prostate cancer sufferers, patients, survivors, and their supporting family, friends, and lovers. There have been many discussions of the symptoms and impact on the body of the cancer and the effectiveness and side effects of the various treatments. Side effects that often include urinary incontinence and erectile dysfunction (ED) formerly known as impotence. Everyone's journey through this often fatal landscape is wildly unique and different. Today one of the partners of a cancer sufferer posted a note that ED just didn't matter and implied that forum members should just be glad to be still alive and shut up about that issue. A couple of men (both suffering extreme cancer-related life-threatening problems) posted that, in their dire situation, sex simply no longer mattered to them. The original poster (OP in today's language) then congratulated those two for "being comfortable in your own skin and for having good self esteem and for knowing what a REAL MAN is." I found her words to be insensitive and hurtful, and did not immediately have the words to respond. 

A couple of other cancer-suffering men did chime in and post to the effect that she simply did not understand. One man went so far as to call her patronizing. I'm not sure I'd have used that word. Anyway, after some time pondering, below is what I posted in reply to her REAL MAN comment:

Thank you, Robert and Henry. I wanted to respond to Patsy but needed some time to think so that I could, hopefully, respond in a way that does neither diminish those with greater problems and suffering nor hurt Patsy for her lack of understanding and empathy while making it plain that her words were hurtful.

My dear wife and I have remained committed and faithful for over 48 years. We have raised a great family who are doing well and enjoying life. I am thankful for her and our children and grandchildren, for my life, remaining health, and capabilities, and I have great sadness for those, like [name withheld here] and many others, whose situation is really much more dire and difficult. My PC was originally diagnosed as stage 2 with a Gleason of 4+3 with “excursions to 5.” Twelve of fourteen biopsy cores were positive for cancer although my PSA had never been over 4 and all of my DREs had been unremarkable. The biopsy was recommended because my PSA went from 2 to 4 in a three-month period (followed because I did have BPH, and the PSA increase was verified with a follow up and a second lab). The RP surgery proved the cancer had spread outside the prostate capsule so my diagnosis was changed to stage 3. I have, and continue, to receive what, to the best of my ability to judge, is excellent medical care and I have excellent insurance. My oncologist, supported by post-surgery pathology, believes that all the cancer was removed. At six-months post-surgery, my PSA is ND. I do recognize that in many, many ways, I’ve been exceedingly blessed.

I have no idea how to communicate the loss that my wife and I both feel, other than to say that it hurts. Our hurt in no way diminishes anyone else’s pain. But it is real. We have benefited from joint counselling post-surgery. Depression meds (for both of us) have helped.

I am as “comfortable in my own skin” as I know how to be, take responsibility for my health where I can, and continue to work full-time now that I’m past my initial recuperative period. I provide for my family and provide emotional, intellectual, loving support for my family. I ride my motorcycle regularly. My youngest daughter and I rode our bicycles in a 20-mile fund-raising event for the American Diabetes Association. I’m training for my first 5K running event in support of funding for PrCa research. I try to be supportive to others through this forum and our local chapter of Us Too. I meditate daily and do yoga on non-running days. I share the housework and read to my vision-impaired wife. She and I do enjoy intimacy and I’ve tried to be a sensitive and giving lover within my current capabilities. But our loss still hurts. It hurts her and that hurts me. And, deep down, there are the fears voiced by Henry (Explanatory note here -- Henry voiced fears on Facebook that his wife would leave him for a more capable lover) —and I do not mean to slight my wife nor disrespect her in any way when I voice this. I believe that if you have not suffered the loss of something that, for your adult life, has been part of your being and part of what you could offer in a loving relationship you probably don’t really understand. And for that, you must be forgiven.


So, Patsy, what is a real man?  And how can anyone define that for any other person?

I await her reply.

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