My Family Has No Clue, Thank Goodness, by E. Mitchel

Do you really want other people to understand what is happening to you?


I have come to realize how much I miss because of depression. For a very long time, a response to troublesome situations has just not been there. My doctors have not been able to do much for the pain, but I owe them a great deal for helping me understand what depression is doing to me. A little bit of painful exercise does more for it than a bucket of pills. I just carry the bucket along for good measure.

When I do exercise, the pain is much greater but the depression is much less. I know I could do much more of it if I could have someone massage the muscles, but we cannot afford that kind of therapy. Maybe someday the third party payers will recognize that even massage is essential care for those with muscle CP.

Central Pain turned me from someone who took action and addressed every needful problem, into one who hides from intimations of trouble and must force a response to anything, even the day beginning, after the nights I must endure. Problems in life mount up rapidly. or is it that I react slowly.

Something happened along the way to dealing with this agonizing pain. The act of movement is just terribly painful. With time pain has retrained the muscles until they spontaneously avoid movement. There are times at night, when the pulling and fasciculating is doing its thing, that I just lie awake wishing desperately for someone to massage my muscles to try to relieve some of the cramping and soreness. The soreness drains my resolve and punctures the plan to do anything that requires movement.

The practical result is that my muscles are expert at avoiding any movement. It is amazing how smart muscles are. The brain forgets, but the muscles never do. I form a determination to do something, start to do it and just fall back before the pain.

Just as you learn to ride a bicycle, and never forget how (just a figure of speech, since cord injury prevents it), the muscles never forget how to maneuver through life while carefully avoiding movement, and they get better and better at it, even as my mind is planning ways to get things done.

Things pile up and there is no way to formulate a plan to get the solutions going again. The pain barrier is just too much. As the efficiency at avoiding pain grows, there is a corresponding shrinking in what gets done. Don’t worry, what does get done is enough that others think there is little or no pain. What is missing is growth, everything is a holding action. What is avoided makes people think it is due to “laziness”, not pain. This causes some resentment by those I must live with. A lot of resentment.

After all these years, if the cold on my trunk forces me to don a jacket or even a coat, over the objections of my burning extremities, which hate touch, my closest family and associates miss few chances to question how it is I can tolerate the contact. A watch punishes me in warm weather, but if one should be donned in cold weather, there are again the doubting comments.

This used to drive me crazy, as it seemed their imagination should be able to conceive of a burn patient, hating touch, who nevertheless might seek protection from bitter cold. My insides still hate the cold, and any blast of cold air is unbearably painful, causing of all things, more burning on the skin.

Central pain was bizarre in the past, is bizarre now, and will be bizarre in the future (until they find something to kill the red eyed devil). However, as reflection on the matter continued, it seemed best that no one understood, even if it made me feel very alone.

This change in my attitude came when reading about the severe depression suffered by C.S. Lewis, a very optimistic man, when his wife died. He couldn’t shake his sense of loss, detachment, and inability to work. When I came to this point in the reading, it was clear we had experienced similar experiences. Finally, C.S. Lewis discovered that his mind improved simply by sitting in the house of one of his children and letting the grandchildren run around him, living normal happy lives. What the doctors could not reach, the vitality of children improved.

I thought how similar my own experience was; and indeed, I was nowhere happier than among children who were oblivious to the frying agony, which was my skin. And so it became clear that if I drug anyone down by explaining why I was such a deadhead, such a petrified nobody, their own vigor would be reduced. In the end, I would be no better and they would be worse.

And so, the terrible isolation. The failure of anyone to recognize that I was in agony and could not be asked to think or act as a normal person, had seemed bitter indeed. It still does. But I had no right to impair anyone’s happiness. Complaining, longing, and sobbing, did me no good and everyone else harm. The detached air of my doctor always seemed like a slap in my face. Yet, I came to think that she too needed some distance to take care of people like me.

And so, in this sea of indifference, I keep my boat afloat, no small task, without swamping others. The result of course, is that by not explaining the gory details, I risk the occasional remark that I am just trying to get attention when I refuse to do something. This is infinitely better than depressing others, who are no better for the experience, and would avoid me further. At least I can sit in their midst, and try to remember what it was like to be alive. Im this strange way, I owe my life to people who are annoyed by my failure to act alive myself.

If you are what you eat, I should soon turn into a pill. My medications include enough antidepressants to choke a horse. I haven’t salivated for years! My psychiatrist says that depression is not always neurotic. It can be a normal response to terrible situations. I must admit to a little jealousy when I read that after a year or so, C.S. Lewis recovered to write some of his marvelous works. That has not happened to me, because I am still in pain.

I have learned to lower my expectations, so that things do not mount up that need doing. Life itself accumulates burdens and I am sad to watch the impact of my inaction, but I am alive, and can still do little things that I observe need doing. Small acknowledgments can bring big results. I would like to make the big display, but from where I sit, the emotionsl widow’s mite, comes at some cost. Pain is not only painful, it is exhausting. I must not enable the reach of its long arms to encircle others, even by showing ugly snapshots of it to those not in pain.

Pain is thus hedged. It would like to detroy everything in its path. It seems so clearly evil. Somehow the evil is contained by keeping it inside me. God grant that I have the strength to accept, analyze, and plan for my allocation of diminished energy. I cannot look at this as failure, but rather the need for very careful budgeting, without squandering my resources, in order to return the favor toward those who rescue me every day.