by Ruben Rucoba
In 2004, at the age of 40, I underwent a stem cell transplant for something called myelodysplastic syndrome, a blood disorder that turns cancerous. The transplant saved my life, for which I am truly grateful. But the transplant also taught me something that many patients with life-threatening illness realize: living with the “cure” is sometimes almost as hard as living with the disease.
I often tell people that a transplant is just a deal you make–you are trading one horrible, deadly disease for a small number of non-fatal diseases that are manageable. That’s the Faustian bargain I made, and I have to live with it. But it hasn’t been easy. In fact, it’s been a very rough road. And that’s how I’ve pictured my life since the transplant—as a journey along a very rocky, mostly uphill road with leaden legs.
As a result of the transplant’s complications, I’ve had a textbook full of medical problems: knee and hip replacements, diabetes, a small stroke, a seizure, glaucoma, and cataracts, just to name a few. Every day I take dozens of pills, inhalers, eye drops, injections, and ointments. Every day, something hurts: my eyes burn, my knee throbs, my hip stings, this muscle spasms or that ligament aches.
The best way to describe my life right now is that I have a diminished capacity for nearly everything. It’s difficult to laugh deeply, as I start to cough uncontrollably due to some lung damage. I am fatigued frequently. It’s hard to find the energy to be as active as I used to be. I can’t roughhouse or play with my kids like I want to. I have a diminished capacity for travel, for adventure, for new friendships, for intimacy, for taking chances, for everything.
Believe me, I’m grateful to be here. Unlike others I’ve known, I’m privileged to watch my kids grow up, to grow old with my wife, to enjoy life. On many levels, I’m still functional: I work 8 to 10 hour days, three or four days a week in a busy pediatric office. I play golf and exercise regularly. I read and write a lot. Despite my physical limitations, I still try to get as much as I can from the bounty that life offers.
Most healthy people experience a smoother road than mine, with maybe the usual minor detours and speed bumps along the way. And many will experience a fairly rapid decline in our abilities and health at the end of life. But my decline is happening earlier than most, and is much more obvious. And I used to rail against it. I longed to be more vital, more energetic, more like my younger self. Men my age should still be flush with vigor, “fresh from the fight” as it were, and ready to slay the proverbial dragon on their life’s journey. Forget the dragon: for me, the journey itself is exhausting, like walking uphill on uneven terrain carrying an enormous weight.
Then I had an epiphany. This arduous journey is the exact thing that’s keeping me alive, it is now my true essence. Though I once yearned for the easy life, I recognize that kind of life is too easy. Through tremendous effort and will, I’ve earned my life, my peace, my contentment, my ability to self-determine. This is my path, and it’s hard, but I’m moving forward, ever forward with each step on this broken road.
Chronic and new health problems are the steep cliffs and hairpin curves along road, full of danger that must be navigated. But the reward for the struggle to get to this point is that the vistas are more beautiful, the air tastes sweeter, the colors more vibrant. The sheer effort required to get to this point on the path is worth celebrating.
I’m fortunate in many ways, not least of all because I’ve taken this journey. In his book, It’s Not About The Bike, Lance Armstrong mentions receiving a letter from a cancer survivor stating, “We’re the lucky ones.” Newly diagnosed with cancer at the time, he thought the writer was crazy. He was thinking about chemotherapy and his own mortality, not how lucky he was. But it’s true: living with this chronic illness is difficult, but it has given me an opportunity to test myself, to see what it is about life that is worth fighting so ferociously for. Enduring this difficult road is my defining spirit and nature, and it’s keeping me alive. I’m up for whatever is around the next bend.