Go head, read the title again then pick your mouth up off the floor. You read right. I'm talking about the positives of being terminally ill, the upside of going down.
What makes me such an expert on this topic you may wonder? The answer is simple. After two failed stem cell transplants for Hodgkin's lymphoma where the treatment almost killed me, I opted to stop trying to cure my cancer, deciding instead to live with it as a chronic, but terminal, disease at the age of 26.
Shocking to make that decision, I know. I once was part of the healthy population. I once told myself that I wouldn't stop fighting until I was killed or cured, but then I found out it didn't have to be do or die anymore. There's a cancer loophole: using therapy to keep the cancer at bay while still living a relatively healthy, active life. However, opting for option number three landed me directly into the dying category.
Soon after making the choice to fight my disease on my own terms, an amazing transformation happened. I felt freed to cope with dying openly, face to face.
All the years before in active, curative treatment when I brought up the possibility of dying I was met with a barrage of "think positives" or "mind over matter" that sent me crawling back into a lonely dark corner to deal silently with my feelings, normal feelings, and fears every patient has.
Accepting the reality of my disease trajectory and working within those limits took the burden of faking confidence off my shoulders. I could finally cry. I could admit my fears and have people just listen and support without attempting to fix an unfixable my situation.
By accepting my disease as part of my life, my friends and family followed my lead and began to accept it as well. My disease was no longer the elephant in the room. Talking about cancer wasn't the equivalent of bringing up politics or religion with a stranger anymore. Nobody had to tiptoe around the subject. We finally opened up communication for everybody about their ideas, thoughts, and fears. My cancer could finally be a kitchen table topic that didn't end in tears or even a big joke at the family Christmas party.
With the adults surrounding me now changing their attitude towards my cancer, and truly believing my disease is something I can live with while sustaining quality life for a significant amount of time, the tension and anxiety of tests, appointments and treatments eased. With the new relaxed environment and way of facing cancer head on, fighting for a long life and happiness instead of a cure the feelings of security trickled down to the children in my life.
My 8-year-old son, X, who has grown up riddled with depression and anxiety from the idea that I could die any time, quickly caught on that the fight had changed for the better. We'd turned a corner in taking control of my disease by accepting it as part of our life, and then, so could he. X embraced the new found openness. He began to discuss his feelings with his cousins and friends, all the other children in our life who had never had anybody directly address my disease with them before. They, in response, began to confide in him about the stressors in their life causing a metamorphosis in communication. These boys weren't working out their feelings with grunts on the basketball court, they were sitting down with tears in their eyes and talking about their mom's miscarriage or how their mom abandoned them alongside X's cancer tales. I have never before seen or even imagined how emotionally aware and supportive young boys could be to each other
By accepting the cards and playing the cards I'd been dealt I no longer felt like I was fighting the emotional battle alone, and soon after, neither did anybody else. Family, friends and myself were able to move forward planning for what will inevitably happen to all of us, together. I no longer felt alone or had to sneak around planning my funeral, buying a cemetery plot, or writing a will. I had support. If the process became too difficult, and I wanted to take time to cry, I picked a shoulder and cried often having the person join me, which is more refreshing and validating than I'd ever imagined.
Accepting my cancer and my prognosis brought back more normalcy than I ever thought would return to my life. Allowing myself to live with my disease and buying time, I'm doing the opposite of giving up or being pessimistic. I'm being realistic and taking the best route available. Even though I have the label "terminally ill," I know my chances and my time is what I make it. Medical knowledge has been doubling every 10 years and maybe, just maybe, I'll be here when my cure comes.