In my forties I was moving forward fulfilling my drive to be a community organizer/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren was a part of growing old that I welcomed along with coloring books, card games and baking sessions where I’d let them lick the spoon.
Getting older was to be a time when laughter would come more easily as I learned to not take myself so seriously, to go with the flow, to explore new ways of enjoying life. I dreamed of finally pitching my screenplay to an interested and able producer, I dreamed of taking my grand-kids out for ice cream and engaging in general silliness that parents don’t always have time to indulge. Taking road trips, mini-vacations, going to lunch with friends, having folks over for potluck dinners, visiting museums in the city, witnessing graduations; all that seemed pretty tame and within reach during my golden years. The only extravagant item on my bucket list was to spend a week in New York and see a few Broadway plays. OK, a really extravagant dream was to visit Harry Potter World. Apparently, one can get old and remain a nerd!
Illness has been a big part of my daily life for nearly two decades and at 64 years old, I have had to let go of the dreams I had for myself. The journey of reconciliation with life in a body that aged way before its time is not an easy one. After experiencing the known stages of grief over several years, I came out the other side feeling weaker and more physically fragile than I could have imagined.
The most difficult part of aging with ME is that loved ones become accustomed to my not feeling well. This of course, because they have no idea just how desperately ill I really am. It is my doing, I know, because they never see me when I’m actually bed bound. Having to be “my own doctor” is another reality that becomes harsher as I age. This, because actual doctors with diplomas on their office walls have no idea of how desperately ill I am! NOT my doing but what can I do but go on as best I can? I endlessly research and participate in raising awareness in the hope that more people will put pressure on governments to allocate funds for medical research aimed at finding a cure (or even adequate treatments) for this Dragon.
Getting older when one is ill requires increasing help from family, friends and the community. Isolation makes getting help for daily needs more difficult in this day and age. It’s easy to let fear point to a not so distant future where I will be unable to care for myself—at all. I don’t want to look that far ahead, so I work everyday to look at this present day alone. No further.
me, aging with ME means to simply, in the words of the Beatles: Let It Be. I’ve let go of expectations from myself and
from others. The best person to care for my heart and soul is me, and I believe
that choosing to let things and people “be” is a good way to feel at
peace with what is. After all, what is the point of getting old if one doesn’t
allow wisdom to grow, to make us stronger in the face of adversity and to
serenely welcome the uncertainty that is life? Isn’t it fascinating that most
of us seniors have discovered that we don’t have all the answers, unlike when
we were younger adults?
As I age with ME, I feel free to not know who I am or what role I am supposed to fill. I’m content to just be the best version of myself. When I can.
See you on the path of healing and beyond,