Having a sense of purpose is innate to the human experience. It gives us direction, satisfaction, and motivation in the present as we build for our future. Purpose drives innovation, invigorates passion, and stirs the embers of better days ahead. Just as it breathes life into every day, a lack of purpose stagnates hope and squelches the ability to reach beyond ourselves into something bigger than what we imagine — a legacy that will last long after we are gone.
Myasthenia gravis is a quiet, determined thief. It has a knack for finding a way into our lives in the most unexpected ways. We wait for medications and the skill to tame it, and we fight relentlessly to repeatedly sculpt and rebuild a new life despite the relentless changes. But myasthenia gravis returns and rearranges the new life that we have made, seeking to subdue our breathless wonder of tomorrow.
Each day is like a quiet echo of itself, brimming with the hope of purpose while grieving a lack of it. Days spill into each other, passing in the shadow of what once was and what we wish them to be once again.
I listen to the sounds of life and laughter surrounding me, which clash with the quiet frustration of restless rest. I struggle mightily against the endless days relegated to unavoidable rest, my bed a close companion, and I am thrilled when I’m able to accomplish something again, even if just for a little while. It feels so good to the human spirit to be able to accomplish and do things; to find purpose in our days, which is as vital a medication as any we could ever consume.
MG has taught me that my body is master to none. We listen to the counsel of others as they discuss how we must find our new normals, but they don’t speak to the longevity of lives that must be continually remade. No one talks about the ever-present, albeit silent, the standard of maintaining a productive and full life in spite of our diseases, or how our lack of productivity can become a sense of sorrowful purposelessness. We are, after all, taught to value and esteem the busy and fruitful individual, inherently making busyness and purpose mutually inclusive, and in the process, we forget the very nature of human value along the way.
What gives us value? What makes us feel as though we have accomplished something, done well, and been good, contributing members of society — members who are esteemed and considered worthy? And why do we struggle so mightily under the weight of self and familial or social recrimination over the changes in our purpose, caused by MG?
For me (and I suspect for many others), it’s a clash between the very human and normal call to find purpose within our passions, work, relationships, ability to earn, raise families, and care for our homes, and the very real need to refocus how we think about our purpose and where that purpose can now be found. MG changes every dynamic of how we relate to the world, and those transformations can be infinitesimal or wholly life-changing. It also alters where and how we find our purpose.
A very dear and wise friend shared with me recently how her daughter reminded her anew that her value and purpose were not tied to her accomplishments or contributions. She related how her child was fully dependent on her for everything while contributing very little to the lion’s share of adult responsibilities in daily living. Yet, her daughter’s life and presence held irreplaceable value and purpose simply by being who she is. And so, too, do our lives retain unconditional purpose and value, regardless of the changes wrought by MG.