[BobbyB]

The intricate balancing of denial and hope
by Tom Swift
published February 3, 2008 12:15 am

Every three months I go to a clinic that specializes in the diagnosis and treatment of ALS. My breathing, weight, muscle strength and other functions are evaluated. A team of professionals that includes a pulmonologist, a gastroenterologist, speech therapists, social workers, occupational and recreational therapists, nutritionists and other medical personnel offer advice and provide equipment to help me live a full life.

As helpful as it is, I dread going to the clinic because it deprives me of the comfort of denial.

I can forget, sometimes, how sick I am. When I am driving or reading or eating with friends, I forget my illness. When I am deep in conversation with a hospice patient or family, thoughts of ALS do not intrude. When my mind is fully occupied and I am not asking my body to do something it cannot do, I feel pretty healthy.

There are even times during the day I believe I am well. Did I just get out of that chair without a struggle? Hey, I walked from my garage to my house pretty easily! I still have energy at 9 p.m.! Maybe I am getting better after all. Maybe I was misdiagnosed.

I avoid looking into the future. I have seen hospice patients with ALS confined to wheelchairs, unable to communicate and dependent upon a machine for their next breath. It is painful to imagine myself in a nursing home and needing a stranger to feed me my meals and help me go to the bathroom.

Forgetting, make-believe and refusing to face the future are examples of denial, at least to some degree. The problem with denial is that it is a refusal to deal with reality. If I persist in denial, I may drive my car past the point it is safe to do so and put others or myself at risk of injury. I may refuse treatment in a misguided attempt not to “give in” to the illness. Future problems may be more difficult to handle because I have refused to prepare for them.

Denial is not always a bad thing. Elisabeth Kübler-Ross wrote that it is nearly impossible for us to acknowledge that we will die. Down deep we believe we are immortal. Denial helps us hold the painful truth of our mortality at a distance until we can begin to face it. Some people never face the fact that they are dying. Hospice patients have told me to the end of their lives that they are getting better.

In the past, I believed I could recognize denial when I saw it. Now that I am living with a fatal illness, I am not so certain. Am I in denial when I pray for healing? Am I refusing to accept reality when I go to physical therapy? Am I delusional when I hold off getting a wheelchair as long as I can? Maybe I am in denial. Or maybe I am maintaining hope.

Tom Swift, D. Min., is a chaplain with CarePartners Hospice & Palliative Care Services. A monthly ALS support group for patients and caregivers meets in Asheville. The next meeting will be Feb. 10. Contact facilitator Pamela Brown at 252-1097 for more details.

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