(By Kristin Rowe-Meche)
I used to think enlightenment was like illumination – rays of clear reason showering down on the cold dark ages of ignorance. I was raised on depictions of god descending from heaven on beams of blinding golden sunshine, heralded by angels, while man cowers in awe. In that Christian worldview, faith and redemption are the gifts of enlightenment, bestowed on us from above. But leukemia gave me a more personal, empowering outlook on enlightenment – one that brought me comfort during my son’s illness and treatment. I believe it will also help me to find meaning and purpose in the future, when our lives are not so clearly and inevitable defined by the roles of patient, caregiver, survivor, healer.
That new understanding goes all the way back to D-day. No, not the allied invasion of occupied Europe on June 6th, 1944. For me, D-day is and always will be June 2, 2006. That’s diagnosis-day – the day Alexander was diagnosed with ALL. In my life, that day is like a big red arrow on a map that says “you are here.” That day made everything clear: you are not a happy, healthy family; your child is not well; you are not going home tonight; you are fighting cancer. That day, I felt a tremendous weight fall down on me. I’m not speaking metaphorically here, I actually felt a heavy, physical burden which made it hard to move and left a constant, dull ache in my belly, like a hard punch to the solar plexus. I was struck and amazed by the lasting physical pain of that burden.
…your child is not well; you are not going home tonight; you are fighting cancer.
I was also struck by the calm I felt, once I was able to move… once a few decisions were made… once we arrived at MassGeneral Hospital… once we had a plan. You see, when you’re faced with a difficult task, like slaying a beast – or three and a half years of cancer treatment – you can become easily overwhelmed the enormity of the undertaking. Unless you have a plan. And that’s what we got at MassGeneral. Like a good story, our plan had a beginning, a middle, and an end. Our plan broke our treatment down into discrete, 90-day phases. Our plan had a job for each family member. Our plan identified risks, hazards, and red flags to watch for. Our plan took our focus off where we were and placed it on what we had to do. Our plan made our priorities crystal clear. And it’s the absolute nature of those priorities, the clarity of that vision, which brought me to my new enlightenment.
…when you’re faced with a difficult task, like slaying a beast – or three and a half years of cancer treatment – you can become easily overwhelmed the enormity of the undertaking. Unless you have a plan. And that’s what we got at MassGeneral.
When you’re involved in a potentially life-threatening battle, a lot of things become suddenly less important. If it doesn’t fit in the plan, it’s expendable. It’s okay if we don’t sign up for soccer this year. We don’t need to take a family vacation. It doesn’t matter if I send out Christmas cards. The lawn looks fine all overgrown like that. And getting a manicure is totally irrelevant. Many, many things that once mattered in my life became completely immaterial. And as I let those little stresses go, as I let the minor priorities fall by the wayside, I felt freer… less restricted… lighter. And I realized that what I was experiencing was enlightenment. My burden was lightened, lessened, not because some understanding dawned on me from above, but because I myself was lifting off and discarding my misunderstanding, my confusion, my distraction with silly things.
And as I let those little stresses go, as I let the minor priorities fall by the wayside, I felt freer…And I realized that what I was experiencing was enlightenment.
And just as they were there with the plan, the folks at MassGeneral were instrumental in my enlightenment. By focusing clearly and constantly on what’s best for my son, they helped me keep my priorities straight. At the clinic, we never had to explain why we wore a wig – or why we now refuse to cut our full head of hair. It’s o.k. to be cranky, to be sore, to be scared. It’s o.k. to overreact to a cough, a bruise, a fever. If cartoons make the infusion go quicker, then crank up the volume. If the medicine goes down easier in a spoonful of chocolate sauce, then pour it on. If there’s a way to make kids feel comfortable, feel special, feel happy while getting well, it is embraced by them. By always providing patience, compassion, a smile, they remind us that when we talk about Cancer Care for Kids, we’re talking about Care for Kids.
If the medicine goes down easier in a spoonful of chocolate sauce, then pour it on.
Now that Alexander’s treatment is complete, I feel I can look back on the enormity of our undertaking. Now that we have killed the beast, I can finally look around at our current situation to say “you are here.” And I do so with humble encouragement for those still engaged in battle, and with thanks for those who helped along the way. My gratitude includes not only the fine medical providers, but the caring of many family members, friends, and strangers who helped us along the way: the Yawkey Building security guard who located a lost Gameboy after hours; the ladies who knit hats for chilly little heads in the winter; music and art therapists who make clinic visits more fun and exciting; thousands of donors who give without any hope of seeing the smiles that result; and brave marathon runners who train all through the winter just to take on 26.2 grueling miles of punishment in the spring. These folks and so many others lightened my burden, and helped Alexander survive. And my meager advice for runners and caregivers alike is this: focus on your plan, and lighten your burden. Stretch your muscles, clear your head, and stay your own pace. Water up and get fuel when you need it and where you find it. Cry when you have to. Smile when you can. If there’s something you don’t need, leave it behind. And don’t think about Heartbreak Hill while you’re still in Hopkinton. It looks a whole lot better when seen from the finish line.