by Linda
"I have only one regret. I wish I had taken more photos when I was paralyzed. When someone tells me that they receive a 'never, never prognosis', I like to show them the pictures of me 13 years ago, and then show them what the present looks like now." - Linda Kendall
"Believe in yourself and in your plan, Say not-I cannot-but, I can. The prize of life we fail to win because we doubt the power within." - Anonymous
It started with a headache that never went away. Then, my foot started to feel numb. I didn't think the two were related and neither did my primary care physician. She said it was probably stress related. "The headaches may be stress related, but the numbness in my foot?" I questioned.
A few months later while watering my yard my legs turned rubbery and couldn't support my weight. I fell. My physician sent me to a neurologist who performed a CAT Scan. I was unprepared for the results.
The scan showed something, but a MRI was needed for more clarity. The MRI confirmed that I had a brain tumor. The tumor, I was told, was the size of a pea, and operable. "It must be removed," my doctor crisply informed me.
I sat for a moment thinking that he was surely talking about someone else. I think I was in a state of shock, and when that wore off, I was in a state of fear. I was 32 years old and up against the most difficult situation in my life. I remember the feeling when the neurologist referred me to a neurosurgeon. I said to myself, "a neurosurgeon - that doctor is going to operate on my brain inside my head." I left the office shaking, telling the doctor I wanted a second opinion. I got one, and the diagnosis was the same.
After having my private pity party, which I was certainly entitled to, I told my family, close companion and friends about my tumor. I felt blessed to have loving and supportive people around me. It made all the difference in the world. I was not alone in dealing with this life altering condition.
The neurosurgeon scheduled my surgery for March 26, 1986, a month after my diagnosis of a non-malignant, hemangioblastoma. The tumor was lodged in my neck at the tip of my spine. I checked into the hospital three days prior to my surgery for tests. My pre-existing high blood pressure needed monitoring and my blood sugar levels had rocketed to 300. I was put on insulin. I had never been diagnosed with diabetes in the past. Still, even with the apparent onset of diabetes, I didn't anticipate any problems. The surgeon said I had a 50% chance of things going smoothly. I guess I didn't hear that the other 50% meant things might go awry. I have a deep faith in God, and I had faith that everything would be fine. It never occurred to me otherwise.
Well, so much for technology. My tumor was not the size of a pea, but of a large grape. I went into surgery fully mobile, and woke up paralyzed from the neck down. I couldn't talk or move. I couldn't believe this was happening to me. I was alive, but unable to function. Life froze, but only momentarily. To facilitate breathing, they put me on a breathing respirator for several weeks. It paralyzed my left vocal chord. I had clots in my legs and a fever so high they packed me in ice. I had never had a major illness prior to my brain tumor diagnosis. One minute I was a young woman in the prime of life, the next minute I couldn't move or even tell anyone what I felt inside.
Now, as I sit writing this, I recall the emotions and heartache that accompanies a brain tumor diagnosis. It's like being dropped from an airplane without a parachute. I was frightened and scared. "Why me?" That was the question I asked myself repeatedly. I had gone from an independent woman to completely depending on my family. Yet, in many ways I was lucky. I'm the oldest of seven brothers and sisters and had tremendous support. I had to move back into my parent's house because I required around the clock care. People could help me, but it was up to me to change my situation. I counted on my faith and ability to defy the horrible prognosis.
As you know, physical changes can be shocking. It was bad enough that I couldn't move, yet, even though I didn't have radiation or chemotherapy, I lost all my long beautiful hair due to the anesthesia and the antibiotics. I got over it, and coiled my head in a turban. People at the rehab center called me "turban lady". The loss of hair was a minor stroke of bad luck compared to my rehabilitation evaluation.
I had been transferred to a rehabilitation hospital where I was poked, stretched and prodded. After a gaggle of well-meaning specialists - a speech therapist, occupational therapist and physical therapist along with the orthopedic doctors - evaluated me thoroughly and then gave me more bad news. "Linda, you're a prime candidate for limited rehabilitation. In our professional opinion, you'll never walk without metal braces, your incontinence will probably not improve, and your voice will never waiver above a whisper. Your stay in the hospital and rehab program will be for 6 weeks."
Stunned, I couldn't thoroughly digest the devastating news. Not long after the evaluation, I began the first of several internal conversations with myself, my internal fireside chats. The conversation began with- why me? Over time it evolved to-why not me? The ability to move ahead with my life came with the acceptance conversation-Yes, IT IS ME! I had to dig deep inside myself to come up with a solution to the dreadful diagnosis. I began saying to myself "I don't think so Linda, I don't think so. All this never, never negative stuff the doctors are telling me just doesn't feel right. It doesn't make sense."
I chose hope and faith over doctors saying, "you'll never do this or that again Linda." Faith and hope became my intimate partners in my quest to get back on my feet. I did not picture myself in a wheelchair for the rest of my life; I did not picture a life of inactivity or wearing a diaper. I pictured myself walking, working and being independent. It wasn't always easy. I had lousy days, and better days, but I decided to take each day as it came. The first thing was to get out of the hospital and set some goals.
After four months in the rehab hospital, far past the estimated 6 weeks, I was sent home in a wheelchair wearing metal braces. I needed 24-hour care, was incontinent and required numerous medical prescriptions and equipment.
Often I recited the quote by Loretta Claiborne. "Forget about the disability and think about the abilities." I did just that. The first to go was the wheelchair. I graduated to a walker, a cane and eventually nothing. I walked independently. I began to practice talking and I worked with my voice. I had no intention of talking in a whisper the rest of my life. While my voice did not return to full capacity, it's horsy today, it is decibels above what it was after the whisper diagnosis. Today, I talk on the phone to friends and co-workers without difficulty. It took four long years from the day rehab gave me the bad news to stand on my own two feet. Thirteen years later, I'm still walking and talking, living a fairly independent life. I work from home as an independent medical transcriber, and I drive in Los Angeles where I live.
Frankly, my doctors were happy with my outcome, yet I believe they were stunned to see me walk into their offices. One doctor told me that their prognosis had been merely a medical one. I think my determination to move past the medical prognosis allowed all of us to see that fighting a brain tumor has as much to do with one's inner courage and determination as it does with a dismal diagnosis. I have great respect for the doctors that I have come to know through my illness. However, it wasn't the doctors that beat the odds, it was me. If I had accepted their prognosis, I would still be in a wheelchair. I believe that my inner faith, hope and tenacity turned a demoralizing medical opinion into a positive outcome.
Life isn't a bed of roses. I live with the right side of my entire body feeling different from my left side. There's a constant presence of numbness and tingling, and the fatigue can be great at times. But I am a survivor. I say the word and savor it. I'M A LONG TIME SURVIVOR. Throughout this ordeal my spirituality was revealing to me, Linda, you simply can't have a testimony without a real test.
Today, I'm in the process of forming my own non profit foundation STAND (Special Testimonies Assemble New Directions) which will seek and bring together long time brain tumor survivors of the African-American and other minority communities, who will reach out to assist those with whom we have a common experience. Survivors can share their experience and coping successes so that other patients and family members will see that they are not alone.
