Putting it into Perspective

Living in a Body

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Putting it into Perspective

Episode 60 -- Rhododendrons in Full Bloom

Jun 03, 2023

Hi. Welcome to Living in a Body. Please click the PLAY button above to hear the podcast version with original music. (12 min) But first, consider helping a friend in need by reading below. Thank you! Hal

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Supporting Nevra

I recently became familiar with the story of a woman named Nevra who is living with severe ME/CFS and who desperately needs our help. I just donated $20 and I wonder if you’d consider doing the same.

Nevra Needs Our Help

Nevra Liz is a 27 year old woman in Karachi, Pakistan, who has been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and related comorbidities since childhood. Her health has taken a dramatic downturn in recent years with the onset of severe Premenstrual Dysphoric Disorder (PMDD). Before becoming dangerously ill, she studied many languages and later used her translation skills to help out disabled patients all over the world and to advocate for disability rights. She is no longer able to do any of these things.

Nevra's average day is about enduring extreme pain and trying to manage her care. All of this is far too much to manage with her challenging symptoms. Often during her PMDD attacks, she has speech problems and cannot communicate with her mother, which impacts her daily care further. The GoFundMe is to help Nevra cover her urgent medical care as well as her ongoing basic needs.

Putting it into Perspective

It's 11 am on a Spring day in Ohio and my shades are pulled dark. The elementary students just walked by my house on their annual field trip to Fred Fuller Park. I could hear the crowd of young voices coming from a distance and then I heard it fade as they headed down the hill toward the river. These are the echoes of children on the glorious last days of school before summer. This is my annual reminder that June has arrived. It’s a whole new generation of students with another generation of teachers and I'm grieving the passage of time. As I lie here in this bed of chronic illness, it's hard to believe that it's been almost 20 years since Hallie was that age. I'm 57 now, retired from my work in the schools and feeling a bit left behind. The combination of aging and chronic illness is certainly not for the weak of heart and unfortunately, I think I may have a weak heart.

My symptoms are severe this morning. I'm grateful that they usually ease up in the afternoon, but for now, it's rough. The ringing in my ears is louder than usual and the tired ache in my legs is profound. I've barely left the bed, so there's no reason to be this exhausted, but that's the grueling reality of this illness. My body seems to have forgotten how to produce energy. Even after a good night’s sleep, my legs feel like the legs of someone who’s been working all day while wearing shoes that don't fit. I've got that raw, out-of-breath sensation in my lungs and my brain feels sensitive and numb. The shades are pulled because I'm hoping to fall asleep again for a few more minutes. During these rough morning hours, sleep is my refuge.

Even though it's just on the other side of this wall, the life-filled beauty of Spring feels like it's a million miles away. My head can’t fall deep enough into the pillow and my dozing dreams are strange and distorted. Somehow though, I'm getting used to the pattern of this illness and I'm fairly certain that this too shall pass. I notice that I haven't cried yet today, but with just the turn of a single thought, I could easily go down that path. This morning though, I avoid despair and I choose a more subtle version of sadness, more like disappointment. There are so many things that I'd rather be doing with this Spring morning than staring down the throat of my limitations in a dark room with ME/CFS.

I'd rather be practicing the recorder. Yesterday, I picked up my tenor recorder and I made a beautiful little melody in a minor key. With a bit of added vibrato, I brought that wooden flute to life. I was reminded of my long standing wish to be a great recorder player. On top of everything else -- a writer, a podcaster, a gardener and all the rest of it -- I want to be a recorder player. I want to spend my days practicing the fingering and I want to become a master of the breath. Whether I'm playing the soprano, the alto, the tenor or the bass, I want to play in a recorder ensemble that rehearses two times a week. I'm longing for that experience of togetherness with other musicians. I love the silent nods back and forth that say, "here's the tempo and… begin." I love the unison breaths, the syncopated phrases and the commitment to blend that keeps us connected. I used to play in a recorder ensemble at the UU Church of Kent. We called ourselves the "The Peace Pipers." At the moment, I'm feeling inspired to get that group back together again, except, of course, for the fact that I'm short on breath and lying in a dark room with barely enough stamina to pull myself off this pillow.

I'd rather be practicing the handpan, the metal drum in my living room that looks a heck of a lot like a UFO. I love the heavenly mellow sound of flesh on steel resonating in a hollow chamber. I love the clinks and the gongs, the dings and the dongs. I love the full body sport that is handpan playing -- supple arms reaching for every corner of the dome shaped surface. I watch those videos on YouTube of the great players and I want so badly to be one of them. I've got a handpan with a D Kurd scale and I'm pretty good at it, but I'm not great. I'm stuck on this one particular alternating left-right pattern and I'm having a hard time breaking free of it. I know the one thing that would change that though. It's practice -- aerobic practice of the paradiddles, a term that the drummers among you will recognize. I'm not actually sure what a paradiddle is but I know if I practiced them, I'd be a much better handpan player. I want to spend the day practicing the handpan. I'm done staring in the dark at this "healing is possible" painting on my wall.

While I'm on the subject, I'd rather be making plans to go to the "Steel Mountain Handpan Festival" in Colorado. I have a feeling that I'd fit in real well there. I imagine me and a bunch of long haired spiritual types jamming together on our musical domes. Whether we're high right now or we used to get high back in the 90's, it's the music that would lift us off the ground. It's the repetitive rhythms and the drones, the slaps and the overtones that would lift us together into the sky. Heck with all this talk, I'm ready to book a flight right now for the August 24th festival, except, of course, for the fact that I'm mostly housebound. And due to the risk of post-exhertional malaise, I can't really play the handpan for more than a few minutes a day. Damn this illness.

It’s late afternoon now on this first day of June and I’m spending some time with the rhododendrons. The previous owners planted these shrubs many years ago and today, their pink blossoms are exploding in the sunshine. I’ve spent the last several hours breathing fresh air and writing this fresh episode of “Living in a Body.” As expected, my symptoms eased up a bit after lunch and I’ve been able to enjoy the flow of the creative process out here on the porch. I’m interested in the change of thinking that comes with the changing severity of my symptoms. With more ease in my breath and less pain in my legs, I’m much more able to enjoy my life. I’m much more able to put it all into perspective.

As I craft these words, I’m thinking of all the people with this illness who are fully bed-bound. I’m thinking of those who can’t work, can’t eat and can’t even speak. I’m thinking of my friend who spends all day, every day with silencing headphones on in a darkened room. I’m thinking of those who don’t have the creative outlets that I enjoy so bountifully. I’m thinking of those that need full time care but don’t have the ability to pay for it. And I’m thinking of people like Nevra (see above) who lives with a severe version of this illness in Pakistan. Apparently, because of the health care system, the male dominated culture, and abuse in her household, she’s had a very difficult time getting any help. There are millions of stories of people like Nevra with ME/CFS who have are much worse off than I am. With that perspective in mind, as I enjoy the late afternoon sun, my complaints are fewer.

Truthfully, I’ve got it pretty good. At this point, except for a couple part-time helpers, I’m fully independent. Thanks to a hit song and an incredibly successful GoFundMe campaign last year, I have money in the bank. I got to play the recorder today. I created a new song on the handpan today. I even got to sit on my porch and entertain 6000 people who were viewing my TikTok live at one point. I have a beautiful front porch and some very comfortable porch furniture. I’m so grateful to have this publication that gives me a deadline to meet each week. My day has been full of crafting words for your reading and listening enjoyment. The rhododendrons are in full bloom, the June sun is shining and reality is all in your perspective. It’s all in how you look at it. Enjoy.

Thank you so much for reading this. Thank you for listening. As I say every week, enjoy living in that body of yours. It’s not gonna be around forever and time seems to be moving faster than any of us ever expected. All the best to you this week. I’m sending love. See you next time. ❤️ Hal