A week after my husband completed thirty-five rounds of radiation for Stage III Prostate cancer, and a year to the date that I learned surgery to remove cancerous tissues from my breast was successful, Ric fell down a flight of steps rupturing his quad tendon. Ten weeks after surgery, he would fall again, causing further damage and requiring a second surgery. This time infection would set in and a series of operations would follow until he was finally cleared. In the meantime, my health was failing, the final blow a bout of pneumonia that seemed to wipe out my system, from which I never really recovered: diagnosis, ME/CFS.
The result has been that our marriage, formerly defined by intimacy, and mutual love of golf, fine dining, dancing and travel, has been overridden by the need to play caregiver for one another. Ric’s recent heart attack and subsequent surgery has plunged us into dependence on outside care for the time being. Both of us struggle with keeping depression at bay – he describes a rage for which there is no outlet, and together we feel like we are walking on eggshells.
Throughout all of this, no one in the medical field has talked about the aftermath of life-altering medical issues. Each of us has consulted a psychologist in recognition of the challenge, but I feel that somehow the medical professionals dropped the ball. It seems that there might have been some strategies put in place to help us with this shift in quality of life (more like loss of).
When my routine mammogram showed something amiss, the doctor told me action was imperative, right away. I am thankful for her quick actions and that she follows up with routine exams regularly. Ric receives the same kind of care at the Cancer Center, where every six months they ask him to rate his pain and if he has any change in symptoms. For ME/CFS there is no traditional follow-up, although my doctor checks in when the disability forms are due.
Only as a result of Ric’s heart condition is a program in place to address lifestyle changes and counselling.
I feel like we are swimming in waters over our head and I am tired of trying to keep afloat.
I remember going to a walk-in clinic at the time of Ric’s cancer diagnosis and mentioning to the doctor there about what we were facing. He shook his head and said: “You do realize that your quality of life will change immensely?” I didn’t know how to respond. I could not have defined what was meant by quality of life at the time.
Now I know all too well.
Like many our age, we spent lots of time imagining what we would do once the kids left home, writing out our bucket list; we even talked frequently about what we would do if we won the lottery. Neither of us foresaw the twists that life has taken.
I am pretty sure that we are not alone. There must be thousands like us, who within the confines of their closed-door existence, are struggling to survive – while their dreams are smashed, one after another.
I give thanks daily for the fact that I am married to a man of character, and that despite the hardships we have the blessing of family and friends.
I still wish there was some sort of manual that would help us navigate these choppy waters – of course, I said that about child rearing too. I guess, as in many things in life, we just have to trust that we are made of the right stuff to see it through.
A little warning might have been nice. Even a few questions to take home and ponder: What will you do when one or neither of you can no longer do the simplest of tasks? How will you care for each other’s needs? Are you prepared to rewrite your dreams? Knowing that you are about to lose many aspects of your life, what are the things that you will try to hold onto? How will you grieve?
We are much more than just physical bodies that have broken down. Is it asking too much to have that acknowledged during the medical process.?
(top image from: http://www.shapes.se, bottom image from wherewegonow.com)
Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.