People have always told me that I look youthful for my age. For the last decade, those comments have comforted me – because somehow I thought that looking young meant aging would be easier than for most. After all, I’ve had high-impact pain and fatigue for nearly forty years. If aging isn’t for sissies, it sure as hell isn’t for this woman in pain.
On New Year’s Eve I turned 58. I’ve never had an issue with age. In fact, when I fill out forms or do interviews, I often accidentally indicate that I’m older than I am. But this year I’m not making that mistake. I’m seeing clearly that I’m much closer to the end of my life than the beginning – and I’ve got a lot to figure out due to significant illness and disability. Long story short, I’ve come to realize that I may be here for the long haul.
But it wasn’t always that way.
When I turned 30 and had been living with body-wide, undiagnosed CRPS for nearly a decade, I vowed to myself that if I was still being tortured without answers five years later, I’d take my life. That gave me an odd comfort because I knew my suffering would end before I got decrepit. Someone somewhere must have heard me because I was diagnosed just before my 35th revolution around the sun.
So, granted, I had more years of life, but I was still certain I wouldn’t live long due to my illness. In my mind, something was going to end me from within long before old age hit. But, lo and behold, here I am still standing (ok, mostly sitting) on the brink of 60.
Looks like I might live to be as old as the hills – and in some ways I find this to be an inconvenient truth. I can relate with those early AIDS folk who planned for a death sentence and lived their lives accordingly. Then when AZT and its like began extending lives, some of these people were devastated because they were psychologically and financially ready for their exit.
Like them, this sticking-around thing is new and I’m trying to figure out what I need to have in place for quality of life going forward. A couple of things come to mind. Best possible mental and physical health leading into old age and loved ones that will offer care and companionship. Right now, I’m short on both. My ace in the hole is my longtime partner and caregiver, John, and I have a circle of close, loving friends. But like them, John will get old – and while he double-swears he’ll outlive me, I’m often told that caregivers die before their care recipients. Losing the love of my life is unthinkable.
Another challenge I see is that getting old would eventually mean losing my nonprofit work which gives my life meaning. That in turn would lead to depression and isolation while still being plagued with high-impact pain. This picture terrorizes me. I’m often labeled fearless, but that’s not my vibe these days. Truth be told, nearly forty years of catastrophic living has hardly provided a solid foundation for my “golden years.” Sure, like everyone, I’d like to live well to a ripe old age – pursuing my passions, spending quality time with grand kids and being surrounded by loved ones when the end comes. Sadly, that scenario is off the table.
That being said, starting today, I’m going to stack the deck for the best possible years ahead. Hell, maybe even the best ever. I’m already on my way – and it starts with attitude.
A dozen years back a friend, who’s been a paraplegic most of his life, warned me that when we’re disabled long-term our bodies fall apart at 50. His words spooked me silly, but the threshold came and went and in many ways I’m healthier than ever. I don’t get caught up in the drama of western doctors telling me that my eye floaters, optical flashes and receding gums are “just another unfortunate sign of aging.” One recently advised that I go off clonazepam because at my age I could take a tumble. When I share with close ones that I’m slammed and fatigued from fibromyalgia and CFS, they dismissively remind me that I’m not as young as I used to be. I wink and move on.
Even the wisdom shared by many woman that menopause would bring me to my knees was dead wrong. On the contrary, it was a breeze. I swore to myself that I wouldn’t take hormones or put on weight. Sure, I have some hot-flashes, but they’re nothing compared to what I’ve dealt with forever. Like each of us, this woman in pain knows how to adapt.
And I’m stepping up my physical and mental wellness. I exercise six days a week, eat a plant-based diet, meditate and practice gratitude daily, live my creative passions and involve myself with meaningful, stimulating endeavors. I work with a therapist to re-frame my thinking about toxic people and to let them go. I’m finally finding balance in my life by taking time off and “un-plugging.” And I’m face-to-face connecting with more people who are special to me. I’ve become a one-stop, hold-no-prisoners diva to quality days ahead.
A few years ago I didn’t think I’d be here to write these words, but here I am prepping for my third act. I don’t know what the future holds for this girl, but I’m guessing… golden.