This is the post about fibromyalgia and chronic pain (and depression and PTSD) that I wish I had written! It’s a marvelous description of the tricky balancing act we spoonies go through as we struggle with acceptance of our condition(s) and refusing to let said condition(s) rule our lives and define who we are. A fantabulous read!
“Fibromyalgia is kind of like my logical nature, there’s no point wishing I was different regarding either!” So went my thoughts one day, that landed me in a long reverie about what it meant to me that I had absorbed my diagnosis like so. I had written before about what acceptance meant to me on a practical level. But now I wondered, what does acceptance, as a philosophy, mean to those of us with a chronic illness?
I think of acceptanceas lying on a continuum between denial and resignation:
In a nutshell: The chronic illness does not tell me who I am or what I can do!
On one end, there is extreme denialthat a chronic illness even exists. Often, this results in massive overexertion, leading to increased pain and fatigue…
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More blossoms…because nature is good for the soul. And the body, too!
Fresh flowers are definitely at the top of the list in my Fibromyalgia Toolkit–especially when they smell as heavenly as lilacs!
Hey, thanks for stopping by! While you’re here, please check out my new, revamped “About” page. It will give you a clearer idea of why I slave over this blog and who I am targeting to receive the fruits of my labors. And when you’re done, I hope you will enjoy the photos of our crabapple tree exploding with blossoms–I wait all year for this!
The summer after my mom died ten year ago, I discovered a cache of letters, poems, and old photos I had never seen before, many of which dated back to her high school and college years. It was disconcerting, to say the least, to discover that my mother–my mother!–had once been as immature and silly as I remember myself being during those years. Well, almost. There were other surprises awaiting me as well.
I think I was somewhere in my twenties when I realized that my parents had actually been people before I came into their lives. Interesting, intelligent, fun people, growing and experiencing young adulthood just as I was at the time. My head almost exploded at the thought. “Well, of course,” my mom said mildly, barely looking up from her mystery novel when I shared my discovery with her. My dad just looked at me. “When I was your age, I was fighting a war, ” was all he said, while I stood there with my mouth hanging open and my world tilted on its axis a bit more. Ever since, I’ve been hungry to learn more about them, the young woman and man who became my parents.
My mother’s letters and poems have helped me understand how she dealt (actually, she didn’t really deal) with the sudden loss of her father in a farming accident when she was 20. Reading her prose makes me sad that she never followed up on her youthful ambition to be a writer, and makes me more determined than ever to somehow, someway, realize my dream of becoming one, chronic migraines be damned! Looking through her papers I am continually reminded that although I may not be her flesh and blood, I am so much like her I might just as well be…The passionate love poem she wrote to my dad shortly before their wedding, well, I just have to keep putting that one aside because I can’t wrap my mind around that one, nor am I entire certain I want to!
But most astounding and overwhelming letters that I found were the ones I had no inkling existed, the letters she wrote to God when she converted to the Catholic Church in her early twenties. My mom was a real Christian; she lived the Beatitudes and was warm, generous, joyful, and loving, forgiving, nonjudgmental and kindness itself. But these letters reveal a depth of love so overwhelming that it is shocking, in the the same way some of the more mystical writings of the saints are shocking. It’s a good reminder that not all saints are canonized, that even those we love most have hidden depths, and that, indeed, we are all called to holiness.
Do you ever find yourself in a rut?
I know I do, frequently. My addled fibro-fog prone brain doesn’t help matters, either. When I was in graduate school i had the toughest time finishing papers because my mind would just get stuck, and I couldn’t come up with any more ideas; it was as though my brain was a hamster on its little exercise wheel, running, running, running, and getting nowhere–except frustrated and angry. Or even with my photography, as much as I enjoy it, I still sometimes find myself, camera in hand, looking at a bunch of peonies and thinking, “Dammit, how am I supposed to make these look interesting?”
Some wise mentors/friends of mine gave me great advice, which I try to remember to follow, and sometimes actually do recall: Change things up. Get off the hamster wheel. Study for a different class, take a nap (YES!), go for a walk, meditate for a while, play with the pupster, have some ice cream (the last two are my ideas, of course)…whatever. Just get off that darn squeaky wheel.
Apparently burnout/hamster-wheel-syndrome is common amongst creative people too, as photography books and photographer friends of mine have also given me a number of ideas to help me leap off the wheel. One is to experiment, learn something new, like macro photography…or do only flatlays for thirty days…or shoot the same spot outdoors everyday for a month at different times and observe how the light changes, how it looks at different angles, etc. One of my favorites is a group project a talented friend of mine, Susan Licht (Licht Years blog and Licht Years Photography in Boston), does a couple of times a year on Facebook, called a #weekofdiptychs. Diptychs, according to Merriam-Webster, are
So this past week a number of us did spring-themed diptychs and posted them on Facebook. and I have to admit that it rekindled my passion for photography and my creativity, and most of all, despite a nasty fibro flare, I had fun! Our yard is simply glorious at the moment, blossoms exploding all over the place, the scent of lilac everywhere…
Anyway, here are some of my diptychs. If you like photography, I hope you’ll try doing some of your own! (I use the Moldiv app on my iPhone and you can also create templates in the Lightroom print module, as well as in Photoshop.)
The little peanut in the photograph below from 1928 would be 89 years old today, and was lucky (?) enough to have been my mom. Mildred Elaine Baach (later Resch) was born to Fern and Edward Baach in Austin, MN on May 10, 1928; this is her tenth birthday since she’s been gone, and I have to admit that I still haven’t gotten to the point where the happy memories outweigh the pain of missing her. Maybe if she hadn’t been so wonderful–warm, generous, funny–or if we hadn’t been so close, it might be easier…or if I didn’t have the chronic illness and depression stuff to deal with all of the time…or if we had kids, and I could feel as though the cycle of life was continuing…but then again, maybe, most likely, none of that would make any difference at all.
I think part of the reason I am posting this is that if you are moving through grief I want you to know that there is no set time limit, no arbitrary rules that say, oh, by one year (or whatever) you need to be HERE emotionally and if you aren’t then you are maudlin and creepy and just wallowing in negativity. Or, ome people might say to you, hey, you should be happy, your loved one is in heaven with Jesus, so you shouldn’t be so sad. Baloney. Even Jesus cried when Lazarus died; you can be glad your loved one is partying up in heaven, but still miss them dreadfully and feel that you’d give anything for just one more hug. Grief is an incredibly complex, difficult state of being, affects every person differently, and no one has the right to criticize you for it. (The only caveat I’d add is that if if you feel your grief slipping into clinical depression, it’s a good idea to seek professional help.)
The reality is that you will grieve forever. you will not “get over” the loss of a loved one you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same, nor should you want to.
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