Death has been a constant companion in my life. As a morbidly sick kid most of my peers in various neurological wards did not survive. Thanks to phenomenal advances in pediatric neurology over the last 40 years my experience is firmly part of medical history. Most children with the sort of devastating neurological conditions I witnessed now survive. Neurological wards of 16 sick children are a thing of the past. Limited visiting hours for parents and loved ones are also history. Hospitals are far more humane and civilized institutions. This sort of change is revolutionary. Yet revolutionary change has not taken place with end of life issues. We Americans routinely die poorly. 60% of Americans die in the hospital. 20% die in nursing homes. Only 20% of Americans die at home--the stated preference of most people. The difference between preference and reality is stark. In this void it has become accepted that the preferred manner of death is controlled. By control, I mean we control the circumstances under which we die--the ideal being assisted suicide. The notion we have a right to die has become an accepted belief. I shake my head in wonder at the idea. Death is a biological inevitability not a right. The reality is for most close family will be making the final hard decisions at the end of life. Given this, we owe it to ourselves and loved ones to have hard and on going discussions about end of life.
I don't like talking about end of life but have done so with my son since he was a child. He knows what my wishes are and how they have evolved. I have come close to death more than once in my lifetime. This has given me a unique perspective as has my disability. For better or worse, many people think death is preferable to life with a disability. This sentiment has been expressed in a myriad of ways by physicians and strangers alike. I get it loud and clear. My life has less value in the eyes of many. Ableism abounds. And like end of life, it is far easier not to acknowledge ableism is built into the fabric of society. When it comes to disability, platitudes abound as do simple stories of overcoming.
Growing up, my son would tell me that if I laughed my face would crack and fall apart. There is a grain of truth here--I tend to be serious to a fault. Yet sometimes you need to blow off some steam. Last summer I had the opportunity to meet the famed Tipsy Tullivan. If you have not seen her brilliant videos on You Tube I urge you to watch each and everyone of them. According to You Tube Tipsy Tullivan is:
Tipsy Tullivan is a writer from Asswallascallacauga, Alabama. She has thrice been nominated for a Pushcart Prize and has published very many books. Her favorite writer of all time is Gary Hannah. When she's not writing, she enjoys dirty martinis, spontaneous travel and hanging out with her best friend Shady Sullivan. Tipsy presents advice she's learned from decades of attending The Association of Writers and Writing Programs Conference, The Smoky Mountain Writers Conference, and Many Retreats Across the Vast Nation.
Tipsy and I had a chance to talk about assisted suicide. We had fun. We shared some laughs. Our time together reminded me just how much I value life. It made me wonder why are so many in a rush to die? Why are people eager to control the circumstances of their death? Why are doctors willing to help people die? Why are people pushing assisted suicide legislation? I want to live as long as humanly possible. I am not foolish. I get some diseases are terminal. I understand medical futility. What I don't get is why people don't want to get the absolute most out of the limited time we have. I want to use every last ounce of energy in my body. I want to slip to death knowing I went as far as I could. As a contrarian, I suppose I am a Dylan Thomas kind of person. The Welsh poet is famous for his poetry and his singularly famous line "Do not go gentle into that good night". To me, Thomas was writing about life in this poem. It was not death but rather life and the tenacity of the human spirit. Spirit I have. Tenacity I have. This makes me quite ordinary. Scores of people are drawn to Thomas words because they are redemptive. The poem itself was written at the height of Thomas popularity and near the end of his life--an end of life that was messy and influenced by a haze of alcohol. For more about Thomas and his famous poem I suggest one read Paul Muldoon's introduction to the 2010 The Collected Poems of Dylan Thomas. I do not own many books of poetry but this is one volume I continually fall back upon when troubled.
I have thought much about Dylan Thomas since Tipsy Tullivan posted the humorous video of us discussing assisted suicide. Life is full of laughs and tears, serious fun and great heart ache. The two videos below clearly demonstrate the range of human experience and remind me what a gift life is. First Tipsy and then Thomas.