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By Jean Swenson, October 27, 2005
"I'd rather be dead than disabled."
I consciously harbored that thought two distinct times. First, it trickled through my mind several months before I was severely disabled in a car accident. Then, several months after that accident, it relentlessly flooded my entire being.
In 1980, before the accident, I had taken a group of teenage girls to hear Joni Eareckson (Tada), a young quadriplegic who sang and painted beautifully by holding a paintbrush in her mouth. We all were inspired by her talent and courage, but I remember telling the girls, "God must know what we can handle, because I could never live as a quadriplegic!"
Several months later those words would be tested when my neck was broken and I, too, became a quadriplegic, completely dependent upon people and equipment to survive. About four months post-accident, reality hit and I sank into a depression that felt like a black hole with no way out. I thought my life was over and I wanted to die. At that point, I felt I'd much rather be dead than disabled.
Fast-forward twenty-five years. I am still paralyzed and dependent on a wheelchair. And I can honestly say I am grateful to be alive.
That's why I'm so concerned about the attitude portrayed in movies like Million Dollar Baby and by many in our society. We seem to be moving toward a "quality of life" ethic that suggests people with certain disabilities or illnesses would not want to live, or worse, should not want to live.
If people around me had taken seriously the statement before my accident that I could never live as a quadriplegic, or my cries after the accident that my life was over and I wanted to die, I might not be sitting here today, living a full, rich, though sometimes challenging life.
I can also understand how caring people might think people with serious disabilities are better off dead, because I once thought the same about myself. Many think they would never want to be dependent on others, but we all age and are susceptible to illness or disability; no one is guaranteed a life without difficulties. We often fear the unknown, but when we're actually in a new situation we rise to the occasion and learn to adjust.
Although I once thought I could never live with a severe disability, I now believe life-even life with extreme limitations-is to be chosen over what some would call "death with dignity." There is nothing dignified about deciding someone's life is not worth living.
However, I'm not advocating the use of extreme life supporting technologies to keep all people alive in all circumstances. The Bible clearly states there is a time for each of us to die. Ecclesiastes 3:1,2 says: "For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die..." Both of my widowed grandmothers died peacefully at home with family, with no attempts to artificially prolong their lives. It was their time to die.
Nor am I suggesting we go against the wishes of those who have clearly stated their desires regarding end-of-life treatment.
But we must not assume others would choose death rather than life if given sufficient support and time. Perhaps if Maggie, the boxer who became a quadriplegic in Million Dollar Baby, had received aggressive physical rehabilitation and psychological/spiritual support, she would not have seen death as her only option. How much better to provide compassionate and appropriate care, including effective pain management. Our goal should be to eliminate the problem, not the patient.
Thankfully, that's my story. I'm so grateful for parents, family and friends who've supported me over the years, personal care attendants who've become my hands and feet, medical professionals who've helped me live as a quadriplegic, my insurance company and others who've aided financially, and the Spinal Cord Society whose quest for a cure brings hope to many. Some severely disabled people may do fine in this life without God, but I'm not one of them. Jesus Christ is my source of joy and strength.
Do I still experience times of frustration? Yes. Do I still require ongoing medical support? Certainly. Do I still value the past 25 years of my life and look forward to many more?
Absolutely.
Swenson obtained an MA in Counseling Psychology after her accident, and actively supports spinal cord research. jswenson@usfamily.net
