Getting On With The Rest Of Our Lives
©1999 Melissa Kaplan, The Carousel Network News, September 1999
common factor in many people suffering with chronic fatigue immune dysfunction
(CFIDS), fibromyalgia (FM), multiple chemical sensitivities (MCS), environmental
illness (EI), Lyme disease, and other serious and seriously debilitating
illness, is the loss of self-esteem and depression that follows as a natural
result of our losing our lives. Loss of life isn't just the cessation of
the basic life-sustaining functions. Loss of life is the loss of the day-to-day
activities, responsibilities and joys that form the fabric of a relatively
normal, healthy, active life in whatever society in which we live.
For most of us, that fabric was woven by our work and the challenges and rewards of our jobs, our families, our friends, our hobbies, our commitment to our communities, and the different ways we sought and attained spiritual fulfillment. When the warp and weft of that fabric is irreparably torn, our joy in life falls through the rips and gaps in the fabric. So, too, does our self-respect, and too often the respect others had for us. From being an active and contributing member of the many communities that touched our lives when we were healthy, we find ourselves outcast, no longer a meaningful part of all that we once were.
Instead, our lives become circumscribed by our illness, by the betrayal of our bodies, by the disorganization of our neurocognitive functions. We spend so much time educating ourselves about our illness and trying to decode the complex and confusing messages our bodies are sending us so that we can (all too often) educate the doctors and other health professionals. The result is that the boundaries of our lives fall in upon us, muffling us, deadening us even more than do the brainfog and blankets of pain that become a part of us. We find ourselves forced to spend time and precious energy justifying and proving our lack of ability and persistence to family, friends, and society as a whole. We spend so much time dwelling on and mulling over the physical failures and the incapacities, limitations and dysfunctions that we become those failures, incapacities, limitations and dysfunctions.
Enough, damn it.
I may never again be what I once was, as defined by a challenging and financially rewarding job, my community activism, circle of friends, hobbies, interests and other activities, continuing educational pursuits, vacations, and volunteer work, but I am still the essential me, the intrinsic me, the soul of the me that was. True, that me is a bit more tempered in some ways, more fragile in others, and overall more frayed around the edges. My soul has been transmuted by what life has dealt it into something a little different than it probably would have been had CFIDS and MCS not destroyed the life that was. But it is still a soul that responds to challenges, that seeks to learn, to help, to do and to give. It is a soul that has become more creative in how it finds fulfillment.
On one side of us, we have a social service support structure that apparently thinks those living off its largess should crawl into a sensorily and spiritually deprived hole for as long as we are its beneficiaries. On the other side, we have society castigating us for wimping out, for not being productive members of society. Already feeling guilty for not being able to support ourselves through our own efforts, many of us meekly crawl into that hole, afraid that if we don't, someone will yank what little financial support we are getting right out from under us. Others who are well enough to do something do nothing because they can't do what they once did and doing anything less than that is unacceptable to them. Well, wake up! That's just kicking yourself when you're already down. Everyone else is doing such a good job of that already, there is really no need for us to do it to ourselves, too!
I may never be an active community activist again. I may never head into the field doing biological research again. I may never design an office from the slab up for 300 people again, nor manage those people in servicing major accounts. I may never paint or draw again. I may never do finely detailed crafts again. For all I know, I will never find someone with whom to share significant parts of my life again. But that doesn't mean that I can't do other things. I can still write (though not as well and certainly not as technically accurately!). Through my writing, I can still give of my time, share knowledge, and continue some forms of activism on those days when the body and mind aren't quite so badly impaired. With knitting, I can still produce something useful and decorative with my hands. I can still do some things that keep me interested and occupied enough to keep from going totally crazy from the forced inactivity. Writing and knitting have become my links back to the world, ways in which I can again contribute, give something back, a way to justify taking up room here on Spaceship Earth.
Those links, links that strengthen and reinforce my soul, are just as important to nourish and tend as the need - the necessity - to tend my body and to keep educating myself about the disorders afflicting my mind and body. Forging such links is something that most of us can do, and probably should do. We need things in our lives that are not centered around our illness.
As with some other pursuits, writing and knitting (or any other needle or fabric art) don't require one to be out in the world or exposure to (too many) toxic chemicals to do them. Instead, the written word or finished fabric can be sent off into the world once it is complete. But being a part of a community of others with the same interests, working in the same or similar craft, can be enriching, rewarding, and mutually strengthening.
Many with our neurocognitive dysfunction may be too nervous or lacking in self-confidence to even think of joining a group of non-impaired people, but may be more inclined to do so when they know that everyone else shares the same odd, annoying and frustrating lapses and difficulties. There may even be some who, when healthy, never thought of engaging in such an activity, but who are now interested in trying it out as they seek new forms of self-expression. While these individuals might feel too unsure of themselves to join a group of non-impaired practitioners of their craft, they may be willing to take that bold step knowing that everyone else is experiencing the same problems.
So, along with the support and discussion groups dedicated to learning more about the illnesses, and the research and politics that now rule our lives, let's look into creating interest groups to feed and support the other needs in our lives.
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