91: Dark Victory

91: Dark Victory

From Chicken Soup for the Soul: The Power of Positive

Dark Victory

The world breaks everyone, and afterward many are strong at the broken places.

~Ernest Hemingway

I was twenty-three and pursuing a career in a city a thousand miles from home. I began to have disturbing health issues. I went from doctor’s office to doctor’s office, and my new friends thought I was a hypochondriac as weeks, and then months went by and no diagnosis was made. Finally, things came to a head. I was hospitalized for shock and released. The next day I made my way back to the doctor. I’ll never forget sitting before the polished desk in his office, retching into a specimen cup he shoved in front of me. “I have a brain tumor,” I mumbled into the Dixie cup. “It’s a neurological problem . . . I have a constant headache; my handwriting’s going; I’m beginning to walk sideways . . . .” He cut me off.

“Seventy percent of my female patients are psychosomatic,” he said briskly.

“I’m not one of them,” I replied. “I need a scan.”

“If you see a psychiatrist, I’ll give you one,” he said, ushering me out the door.

The next day, the psychiatrist said I seemed well adjusted. He watched as I staggered towards the front door, weaving down a long hallway. “Are you aware you’re walking sideways?”

“Oh yeah, I have been for weeks now,” I replied. By the time I got home, it was mid-afternoon. I seldom turned the television on during the day but for some reason I felt compelled to. Dark Victory was playing on Turner Classic Movies. Bette Davis was battling a brain tumor, and had all the symptoms I had been describing. I called my boss to take a leave of absence, packed a bag, and called a taxi to take me to the ER. An intern looked into my eyes and ordered a CT scan, which confirmed my suspicions. I didn’t feel vindicated so much as grateful to have found a doctor willing to listen. Sometimes that’s half the battle.

Since that fateful day thirty years ago, I have had fourteen major surgeries, either involving the brain, spine, pancreas, spleen, eyes, or kidneys, and will soon have a kidney transplant. In the intervening years I have learned — always the hard way — that no one knows my body as well as I do, and I must take control of my health. Because my cancer is a rare one, VHL (von Hippel-Lindau), and has so many varied symptoms, it is hard to diagnose. Medical knowledge is better than it was decades ago, but even today, too many doctors don’t know much about it.

Everyone lives a complicated life, even without the variables of chronic illness. Those living with a very rare disease, however, have times when we envy those with a well-known and well-researched one. This multi-symptom cancer has no middle, just a beginning and an end. Symptoms come in spurts. Sometimes they crop up after years of inactivity. Sometimes they appear several times within a year. People die when their bodies become overwhelmed by disparate tumors and problems associated with the disease.

I survive episodes of illness, surgery, and recovery by remaining stubbornly fixed on the goal of getting back some semblance of a normal life. Throughout the years, it has been up to me to redefine “normal.” I’ve learned what I can about the disease, joined an information and support group, and interviewed dozens of doctors to form a medical team. In the process, I’ve discovered fundamental truths about myself: I can stand up to doctors, technicians, and medical staff when I need to. When I take myself seriously, I gain more self-assurance, no matter what the trial. And I am incapable of using a bedpan, even if it means waiting ten hours before going to the bathroom!

I’ve lost friends and a first marriage to the cracking up — sorting out — coming-to-terms baggage that accompanies anyone who lives with chronic illness. Gone are the certainty of bearing a healthy child (with a 50-50% chance of passing VHL on, and not wanting a child to contend with a sick mom, I opted to have none) . . . the ability to continue the athletic pursuits I love . . . the ability to work full-time . . . independence and privacy . . . at times, personal dignity and modesty . . . and the luxury of what I call “false positives” — such as people taking for granted the fact they will wake each day and their bodies will work effortlessly. It’s hard weathering things most people normally confront in old age — or, if they are lucky, not at all.

But self-pity to me is a bore. Even if I have to pretend a little, I force myself to re-engage in life and find things I can do. Soon I re-appreciate all I have and am able to do, and the activities and hobbies that keep me engaged fulfill me again. I resolve feelings of meaningless and loss and move on. I reach out to others who are hurting or in emotional pain, and almost always feel empowered and relieved to get my mind off my own troubles.

Sometimes when too many surgeries (and too much pain) catch me up short, I still lose a sense of balance (it’s called being human), and I become distraught and frightened. Sometimes I get caught up in my daily obligations and forget to nurture my embattled body. I do so want to be “normal” and keep up with the usual business of the world. But illness and fatigue intervene. And I realize that I have to put my own health first.

When I was first diagnosed with my chronic illness, the hope that sprang from within me was born of courage and determination — not just to survive, but also to prevail. I have prevailed and I have gained perspective over the years. My second marriage is a long and fulfilling one. My relationships with my family and friends are more authentic. I don’t hold on to toxic people; I don’t have time for them. I walk through fire, and am purified and humbled by the experience.

I know my willpower and inner strength are ironclad when I must call upon them. My spirituality grows ever stronger. I’m constantly learning to appreciate, develop, and nurture this gift. And because the lessons are not learned easily, they are all the more precious. This disease has not only defined my life, it has refined it as well.

~Amy Gray Light

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