The great thing about being young for the fortunate among us, was that there was nothing wrong with us that couldn’t be fixed. Teeth could be straightened by braces, eczema solved by salve, infected tonsils removed. Fairytales were plans. Flaws of personality or appearance would be solved simply by growing up.
If we lacked control over our lives it was because of adults. Left alone, we knew that we would be successful, purposeful and strong. Our talents, our beauty, our vision of the world would be recognized as special. We were magic. We were, most of us, exempt from disease, from aging, from failure.
When did we each get our first hint that reality wasn’t ours to invent? When we flunked a course at school, failed to make the team, lost a relative to death? Or was it later, after a promising career, when we failed to advance.? Or when a child, reared so carefully by us, became troubled?
If not earlier, there is no escaping our lack of control over ourselves when we begin to age. No amount of will can enable us to read without glasses, morph our bodies back to teen-aged tautness, our memories back to acute. True, our new, middle-aging generation is exercising, dieting, lasiking and plastic-surgicking itself in an attempt to maintain the illusion of youth. Keeping control over mind and body can a fulltime job.
So what about those of us who have been afflicted with a chronic disease? Isn’t the issue for us, as well, the lack of control over our bodies and our lives? Being young, being attractive and being healthy are rarely matters of choice. Surely there must be some way to maintain a sense of autonomy and worth despite the limitations of mind/body/age/disease.
In fact, in some ways our limitations may heighten our sense of self and enable us to become more who we are. (Here I need to come down from the high horse of the third person, and talk about myself.)
What I used to be: pretty (some said), charming, bright, gregarious.
What I am now: moon-faced (from prednisone), moody (ditto), blistered (from my chrocnic illness,pemphigus), still bright enough,when I have the energy and too tired to spend time with people I don’t want to.Gain: I don’t worry so much about how I look, let go of vanity (well, sort of: I can answer the door without make-up!) And I don’t waste my time with people I don’t want to.
I used to be: A people-pleaser, always ready to show how helpful and supportive I could be.
Now: I assume that others can take care of themselves at least as well as I can take care of myself. And let them.
Gain: I’ve stopped taking responsibility for everyone else’s welfare.
I used to be: ashamed to ask for help.
Now: if I need something that is not unreasonable, I ask for it.
Gain: I no longer build up resentment towards those who fail to “guess” my needs or to offer to take care of them. Big plus: my friends and family are relieved to know how they can help and enjoy playing a larger part in my life.
I used to: take responsibility for putting on family gatherings, to the point that I couldn’t enjoy them myself.
Now: I’ve faced the fact that I was never Martha Stewart, hate to cook and am frantic about “presenting” meals.
Gain: My family does a beautiful job of cooking, serving and cleaning up, and I get to do what I enjoy most: talk and listen.
These are some of the ways I’m coping. And along the way, I’ve been liberated from attitudes and behaviors that served me poorly even when I was well!
But, as a psychotherapist, I’m not surprised to notice that there are myriad coping styles, Let me count the ways. (Feel free to chime in):
Intellectualization: Anyone reading this is doing that. Check this website. Read the books, reasearch latest treatment protocol. Control through knowlege! You too? Why not! Your brain is way ahead of your body at this point. Use it!
Rage: How dare the gods do this to me?! What genetic genius arranged this undeserved biochemical botch? Here In the greater(?) Washington area there used to be what were known as Beltway screamers. They were mad as hell at anything you can imagine, and to deal with it, they’d close their car windows, circle around the belway, screaming, unheard. It was later decided that moaning, from the gut, was even more effective. Beltway moaners, they became. Doesn’t do it for me, but:
Discharging anger in ways that spare the people around me does. (Do you think that women who beat rugs and thrash laundry do so for sanitation?) A former client of my got release from beating her mattress with her best tennis raquet.For most of us, unfortunately, unexpelled anger fuels resentment. Let it out! (Upper body exertion seems best for this.).
Pleasing, appeasing: If we’ve earned our wings by caring for others and expressing our own needs indirectly (if at all) how can we now enlist help? If we fret about NOT getting what we need, we’ve lost it. (Obviously, I’m talking mostly about women here. Most men don’t need this!)
First, do it yourself. Fix a scrumptuous breakfast, serve it on your nicest tray, add a flower if you have one, gather up papers and magazines, whatever, and go back to bed. Stay as long as you can. Exult. If you can stand it for one hour you’ve done well! Gold star.
Don’t do it at all. “I’ve really had it today; please take care of your own meals.” “And find something for me while you’re at it.” “Find some one else to take to the concert.” “Go to the show alone; I’m too tired.” “Sorry you don’t have company. Why don’t you call some one?” (Don’t respond to, “You just never did like Tosca, did you?” unless you say, damned right.)
Use outside support. With the exception of Tosca, all the above can be supplied by online grocery services, take-out taxis, restaurant delivery services. These are health essentials and they don’t talk back. Along this line, find a local drug store that delivers. They can supply meds and other supplies, saving your energy for more important things.
And what ARE more important things?
Friends. They are part of who we are. Some may now be isolated too and be buoyed to hear from us. All it takes, as for most of this, is a telephone, a pen, or this modern marvel, the computer (and how satisfying it is to master it!).
Family. Sisters, brothers, aunts, uncles, children, grandchildren, forebears alive and dead. This time of life is, for many of us, Erickson’s stage of generativity vs. despair. Our immortality and humanity (I believe) comes from our connection with relatives preceding and succeeding us. The more we involve ourselves in their history and future, the more we weave ourselves into the fabric of family and humanity.
Self: The discovery and development of who were really are. I like to call it being “self-full” in contrast to “selfish” (discounting the selfhood of others) or “selfless” (discounting one’s own self.)
Fellowships, crusaders against disease, (like the Pemphigus Foundation) another provide Journals, support groups, networks. research of all kinds, keep us in touch, informed and connected.
Chronic disease is a condition of being human. Coping with it may be a way to discover our humanity.