Sometimes a letter strikes a chord, reminding me of my work, my life – and my future.
Such was the case with an e-mail from a woman who thought she had a handle on her lupus after more than 10 years but recently learned that the numbness she had been experiencing in both arms and legs might be MS, and that she probably will be in a wheelchair soon. “My anxiety and frustration comes from not knowing how to fight this battle,” wrote Christine, adding that she “will not lay down and die.” She asked if I had any tips.
My first column for this section, in 1992, was on this exact topic, and my response focused on the alienation that goes with disability. Looking back on that letter now, I can’t tell whether alienation was even an issue for the reader. But it clearly was for me. Similarly, the advice I will offer in this column – my last for The Inquirer – really reflects my view of my life right now, although I hope I am speaking to Christine and to others as well.
Anxiety, frustration, powerlessness – all are about fear. Most people with chronic or debilitating disease talk about “fighting this battle.” Most of us battle things like this not because we are pursuing a vision of victory, but because we are terrified of what will happen if we don’t fight. And what is our ultimate fear? Death.
All things living one day stop living. But we may be the only species that knows we will die. How we deal with that piece of information day to day can determine the quality of our lives. Some people spend the years being cautious, hoping to postpone death as long as possible. Others clutch familiar ideologies that promise life after death; look at the billions of dollars spent in an effort to avoid aging and death. Still others deny the reality of death by racing through their lives ignoring the needs of their bodies/mind/spirit. And when death visits, we battle.
All fear is about the future. And when confronted with the fragility of life, it’s hard not to think about the future. When we do, however, we are at risk for living in the future. That is the real tragedy, because living in the future takes us away from the life we have today.
I have faced death many times. I feel my body growing tired. I hope I live another decade or more, but I also know this summer could be my last. Not that I have a rapidly deteriorating medical condition; I am just fortunate enough to be aware of the fragility of my life. As a result I have discovered that my fear of death wasn’t because I didn’t want to die. It was because I didn’t want to stop living a life I cherish – all the people I love, the changing seasons, the smell of fresh-cut grass, the sound of the ocean, and, above all, my grandson’s voice on the telephone saying “Hi, Pop.”
My life is not joyous every moment; I still feel the same neurotic anxiety I always have. But there is also a larger awareness that reminds me that this anxiety or depression or insecurity I might be feeling in any given moment is simply part of the tapestry that is my life. And new emotions and experience are waiting right around the corner.
Readers who are hoping for a list of practical “tips” of the type we so often see in the news media may be disappointed. I can only offer one big one: Don’t spend so much of your energy pursuing the life you want or avoiding the life you fear. Have the faith to live the life you have – and live it fully, with great love and gratitude.
This is the secret of Andrea Collins Smith, the terminally ill mother of five young children I wrote about six weeks ago.
And of Hannah, a patient I treated several years ago. It was the final days of her life and her family was gathered at her house when she passed by her laundry room on her way to the bathroom and noticed that someone had folded the laundry. “I am such a lucky person, somebody folded my laundry without being asked,” she told me. She died the following week.
And of my father, a world-class cynic, who looked back near the end and said, “I would give this life an A.”
My deep appreciation for the fragility of life is also the main reason that I have decided to stop writing this column as it is now constituted. I plan to take the summer off and perhaps return to these pages periodically, or maybe in another format such as a blog. I will also continue my radio show, which – in combination with this column – has allowed me the honor of opening my mind and heart to so many wonderful people over all these years. These columns may have provoked some thoughts and emotions in your lives. Your readership certainly has contributed to the meaning of mine.