For some of us, disease is our constant companion. We suffer, we adapt. We educate ourselves and try to understand. We strive to appreciate the good days and make it through the bad ones. Always, however, in our hearts and in the back of our minds, is the fear factor. We fear many things. I'm not certain what your fears may be, although I think I could guess many of them; therefore, I will tell you what I fear, in the hope that you will relate to some of them.



I fear my inability to cope with the daily pain and discomfort. I fear many of the complications of my particular disease. I fear the constant change - this change and misery which has brought on a loss of my vocation, income and provoked a necessary change of lifestyle. I fear the effect this change in me and my life has on those I love. I fear the change in my appearance. Vanity, thy name is woman, and I am not ashamed of the fact.

Even though I am a nurse, I am most often now a patient. I still fear going to a new doctor. I fear the indifferent one. I fear that glazed-over look in his eyes when I reel off my list of symptoms. It is such a blow to one's self-esteem to have something which has devastated my life so completely, treated lightly by a fellow member of the medical profession. I fear the possible side effects of any new drug. I fear many medical procedures, maybe because I know too much about them. I fear the constant deterioration of this shell I live in, my body. I often feel I am in a race, a race for my life. TICK TOCK, TICK TOCK. Many days, I know I am losing. But other days, I do well just to (metaphorically) run in place.

I fear the further loss of my dreams and my hopes, for that is what life is made of, isn't it? What is the scariest fear of all? No, not death, because I believe that to be a peaceful place. I would have to say the scariest dread of all is the fear of uselessness. To be useful to one's self and to others, that is the substance of life.

The sense of accomplishment that comes with the most simple activities of day-to-day life: cleaning house, folding laundry, grocery shopping. I fear dependence on others for those chores. I want to choose my own groceries, keep my home clean enough for my frustration level to survive, provide a pleasant environment for my husband as well as myself. Perhaps, I can't garden and care for a whole yard full of flowers as I once did, but I can nurture and coax along a potted tree, a porch full of flowering scented geraniums and a hanging flower basket or two. These things give me pleasure and they keep the fear away from my heart. I want to feel well enough, always, to perform little acts of affection and love toward my children and grandchildren, such as baking a batch of cookies with them, taking a walk along the river or baking a special birthday cake.

Living with chronic pain and illness takes a truckload of courage. It takes courage, some days, just to get out of bed, get cleaned up and face the coming day. It takes courage to shut up about it and keep many things to myself and not dump them onto a loved one or friend, simply for 30 seconds of sympathy. I have come to see this whole area of talking about my health differently than I did 15 years ago. To me, to tell a relative or friend the details of my suffering is to ask them to carry a heavy load. It is to say, ?Here, put this pile of weights on your back and tote it around for awhile.? Is that an act of love? I don't think so. A prayer that I have loved and remembered for many years is from the actress Rosalind Russell who suffered from rheumatoid arthritis. She said, ?Keep my mind free from the recital of endless details; give me wings to get to the point. Seal my lips on aches and pains. They are increasing, and love of rehearsing them is becoming sweeter as the years go by.?

It is often an act of will to keep this ?thing? from taking over every aspect of my life and my husband's life. It takes courage to continue to seek help. I takes courage to keep on keeping on. When I exercise, lift a light weight, watch what I eat, it isn't because I'm such a ?good girl,? it's done because I'm afraid. Fear of immobility and dependency drives me on.

It also takes courage in dealing with friends and acquaintances. Many of them have no idea that I have been to another place, perhaps a place they have not visited. My life is unusual. It is a complete departure from the rat race, the competition for more and better which dominates our society. Some of that simply doesn't matter to me anymore. That may make me an anomaly, I realize. It doesn't make me better or worse, just different. My angle of vision has changed.

Where does one find courage? I guess it's different for everyone. Some find it in a deep religious faith. ?I will lift up mine eyes unto the hills.? Others find it in the arms of a loving family and their mutual need to give and partake in family love. For others, it is a matter of personal courage. I guess I embrace all three. If I have one life to live, I choose to do it with as much dignity as I can muster, as much pleasantness as humanly possible under some unpleasant circumstances and with enough personal honor to still like myself.

Remember, courage is not the absence of fear. It is facing the challenge anyway, head high, eyes straight ahead to do battle as a soldier in this army of life. Fear? It doesn't matter. Take it along with you. It's going to trail along anyway and having courage to face all that lies ahead gives us control over our own lives. Courage my friends, courage.