I find it hard to let go of pieces of presumed wisdom I learned as a child, even if they're only phrases or adages. A friend of mine confesses he frequently hears his mother's admonitions--and she has been deceased for years. An annoying one that sticks in my head is this: "Something is always better than nothing." I don't recall who said it to me but it must have been said often because it drums in my head even into my middle age. It might well have had a useful hidden message--for example, "try to be satisfied with where you are in your life and with what you have."

I interpreted it differently--as a warning about intimate connections--"You better take whatever you are offered in a relationship--never ask for more--keep your expectations low--be grateful for something - rather than nothing!"

Even if I can't remember who said the original words, I know how I arrived at the belief that something always trumps nothing in relationships. For me it's because I have permanent resident status on the planet of chronic illness. Frankly, I've been amazed when relationships work, anticipate endings before they happen - even learned to avoid shedding tears. During talks and speeches around the country, I've met many women, and yes, men too, who have had similar experiences. We don't feel we're entitled to expect a companion, spouse or partner to be selfless 24x7, and sacrifice their lives to our diseases. However, what I see so often is the unwell partner is too willing to accept less from a relationship than would be the case if disease were not a constant presence.

Some years ago I knew a man who had a late diagnosis of M.S. (by late I mean his early 40s). Rather quickly he went from being an athletic, active, successful, vital man to someone starting to become dependent and struggling to maintain a profession and physical strength. His essence was still present, and he did not seek pity nor did he choose to talk about his deteriorating medical situation. Seemingly without warning one day, his wife left him. I happened upon him as the moving van pulled away from their apartment building. I witnessed the fleeing wife jump into a taxicab following behind the van. He was still mobile then, needing only one cane to function. He stood in front of the building watching his personal drama unfold, in full public view. I quietly asked him what was happening. He said his wife had decided she had to leave before it got too bad -- that she didn't want to see him totally diminished. His wife would not and could not face what he would be like when the full ravages of the disease were upon him. I was shaken and angry for him. I've not forgotten what he said. He understood her limitations and she had already begun to neglect the commitment to the marriage, to the vows, to loving him in a way that made him feel whole or comforted. And then he said, "Sometimes nothing really is better than something. What she offers me, even if she had chosen to stay, isn't enough."

Wow! I thought. That old phrase got turned on its head and in doing that I learned my friend believed he deserved a full life and a full relationship, as well he did. After many years he did decline and finally died. He had many close and dear friends who cared about him and stayed in his life until the end. He did not, however, find another spouse or companion, but he had a remarkable and obvious inner peace. Although his body betrayed him, he retained an internal image of the man he had been and in many ways, still was. He had the ability to define his wife's decision as a weakness that was her issue and not his failing because he got sick. Despite what must have been sorrow and grief, he wasn't bitter and did not speak ill of her. Eventually, he stopped talking about her or his past. His life became ever harder, but he maintained a dignity I've rarely seen. Somehow he combined that with natural warmth and a continued willingness to connect with friends and acquaintances.

When I become ill with another autoimmune flare I force myself to think about this man. I remind myself that although it is good to be satisfied in life - it is not healthy to convince myself a tossed crumb of love or friendship will suffice because I am unable to control my disease. I can't lose my disease, but I don't need to relinquish my core identity by allowing myself to feel unworthy of being loved or cherished. Through it all, I have maintained inner strength, my friendships, and I do try to keep an open heart. However when someone I care about is meager with love or attention --- I hear my old neighbor whispering in my ear:

--"Is this a situation when nothing would be better than something?"--

Finding this balance is a difficult task for all of us with chronic illness or other challenges, especially when we feel vulnerable and isolated by disease or limitations. To help in our healing, it is important to remember being worthy of love and affection should not be linked to physical well-being.

About the Author

Alida Brill

Alida Brill is an award-winning writer, social critic, and women's advocate. Her most recent book is Dancing at the River's Edge: A Patient and her Doctor Negotiate Life with Chronic Illness.

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