 Photo by Donald Giannatti on Unsplash
I have Parkinson’s, a terrible disease. Pardon my venting on the page, but it's important for people to know the havoc this particular disease wreaks on the afflicted. My legs—from my toes to my knees—feel frozen with rigidity, numb and painful. It is becoming difficult to walk. I’m afraid I will end up in a wheelchair or worse, bedridden. Stiffness is a standard side dish when Parkinson's is on.the menu. I don't swallow the way I used to. This is also related to Parkinson's. I may end up unable to swallow—ever. Which is to say that I'm pre-grieving being unable to swallow donuts. I’m constipated, another a delightful Parkinson's symptom. Did I mention that I am also burdened with acid reflux and nausea? I have insomnia every damn night, waking up at two a.m. if I am lucky. It's a surprise to no one when I nod off intermittently throughout the day without warning and sometimes mid-sentence! I have no social life. I have no earthly idea how I'm going to feel from one day, one hour, one moment to the next. Mostly, I'm preternaturally weary. My life in the twilight zone is also a direct result of Parkinson’s. I’m in pain most of the time and sick of going to specialists who most definitely won't heed my requests for something stronger for said pain. They are protecting me from myself, of course, but when I'm deep in the pain cycle, I want answers: When will the time come when my pain and sleep problems will be acknowledged, addressed, ameliorated? How much more do I have to suffer? More specifically, how much more do I have to suffer in pain and sleeplessness? When is enough, enough? My father also had Parkinson’s, so I likely have him to thank for my winning chromosomal lottery ticket. In the end, he chose to have a feeding tube. That would not, will not, be my choice. On a brighter note, my handwriting has improved considerably. I CAN STILL WRITE. During my gratitude meditations (which admittedly have become shorter of late), I try to remember this mitzvah—I can still share my sentiments on the page. I also take solace in knowing that I am surrounded by people who love me. I will not die alone and for that, I am deeply grateful. I will not be traversing this path, forging this journey, unattended. I am a lucky person with a very Lucky dog who gives me comfort on my unlucky days. If there is a God, Lucky was a gift, as was Whender, Dana, Ann and all the people who assist me. To them, I have a message: I could not endure this journey without you. I want you to know that I love you. Thank you. To Parkinson's, I have a different dispatch: F' you. You haven't stopped me yet and despite your debilitating mix of symptoms, I plan to persist for quite some time. I've got tools and people and I've endured worse. I'm a strong woman with a potato* of my choosing, thank you very much. * ... which here is intended as a metaphor for life—namely mine.
0 Comments
 Photo by Flash Dantz on Unsplash
August 19, 2024 3 a.m. journal entry: Today I feel like I've had enough. I'm so weary from being sick. My mood meme would be: Tired of living but scared to die. Dear God, I know I’m not supposed to ask for myself, but I’d like to string a few good days together. For the past couple of months, I’ve been nauseous all the time. Sure it might be a fast way to lose weight and nominally better than Jenny Craig, whose food tastes like cardboard. And sometimes cardboard with chocolate sauce. And certainly it's more cost-efficient than Weight Watchers. But what's worse is that not only am I nauseous, I also have acid reflux. I could start my own orchestra with the sounds that come out of me. My friends say I could conduct my own concert. I’m uncomfortable a good deal of the time. My thoughts naturally yearn for yesteryear when my once strong, beautiful legs propelled me through countless practices on a Masters swim team and held me, unflinching, in down dog. Today, those same legs, from my supple knees down to my cute little toes, are covered with bumps. I don’t know what they are nor do the medical professionals. One doctor I consulted about the mystery bumps and my generalized malaise prefers to diagnose me over Zoom. Let’s call her Dr. Zoom, board-certified Dr. Z. She refuses to see me in person. Yay for modern technology. Something is going to get me, but I can’t predict what, I try to tell her with my anxious expression, squinting at the computer. Neither can she, especially through our remote "connection." Telehealth, it's called, although it likely tells her very little about how I am really doing. I turn 80 next year, if I make it. If Dr. Z could see me in person, we could explore—even co-create—the Octogenarian World I'm about to enter, anticipating and embracing all it's inexplicable contradictions. Like why on some days am I determined to push through—to make every day count with the friends I love. And why, on other days, I ask God to let me die in my sleep. My simple cosmic ask is unrealistic, as God would know, since I don't sleep. I would be bracingly honest with Dr. Z, sharing that I want a quick death. I'd reveal that I’m terrified of losing my memory even as there are hints it's slipping away already. I'd state with conviction that I'd rather nod off forever then have hands that shake or legs that can't carry me. I don't do wheelchairs, I'd explain (masking fear with my signature mirth), because they don't make designer wheelchairs. She would draw me out, beyond the topics of lumpy legs, relentless insomnia and the expensive comfort dog that snores. I'd reject, again, her suggestion to try the dignity-stripping CPAP machine. My sleep is hard enough as it is without trying to do so with a mask-contraption over my face. She would validate me implicitly whilst nodding with soft eyes. She might even probe for pain in the direction of root causes by asking me about my childhood, to which I'd respond: I remember the first day of kindergarten like yesterday. I, unironically, had separation anxiety from my mother. She picked me up early from school, brought me home and fed me Oreo cookies. She told me she made them herself. I took the gooey middles out and put them back together in the cookie jar for my brother to find. My only sibling, two years older than me, was the golden child, blond curly hair, bronze skin and a beautiful smile. He could do no wrong. I was jealous so when he wasn’t looking, I broke all of his toys. He never forgave me. He went on to become a successful neuropsychologist. I went on to have legs covered with bumps and an exercise regime comprised of making it to the bathroom successfully. Dr. Z would pretend to empathize, maybe even reach over and put a hand on my shoulder while asking something like: "Did you and your brother mend fences over time?" Not so much. He got back at me by putting my baby finger in a bike chain, ripping it off my hand and then somehow managing to blame me...to this day. I think fondly of him each time I look down at my deformed finger. (I would hold it up, dramatic and theatric, to show her.) He continued to walk on water until he married an Asian woman and my father disowned him. The fallen, once chosen one, eventually forgave my father for destroying him but never forgave me for taking the middle out of the Oreos. So you see, Dr. Z, it hasn’t been an easy life and my looming 80s are sure to be just as dreadful as kindergarten. But all is not lost, because my parents, in a spasm of thoughtful preplanning, bought a plot for me in a mausoleum. I’ll be next to, but still apart from, my mother for infinity. I wonder if I’ll experience separation anxiety when I’m dead. At this, the good doctor, shifting her gaze back to her computer, would pivot to a new topic: my follow-up appointment by Zoom.  Photo by Gene Devine on Unsplash
Nightfall, for me, augurs anxiety. Here it comes, people. The struggle to sleep—to finally fucking rest. Tonight, like every night, will be typical. I will toss and turn, a la a human rotisserie. The phone dings softly at nine o’clock (to remind me to wind down for bedtime), and I am at the starting gate of the anxiety races. There she goes folks, number seven, she’s off and running at Churchill Downs. She’s shooting for a low number—something like 120/80. I put the cuff around my arm and count to five. Breathe in five…breathe out five. That should get me to a low, average, normal number. I sit quietly, sweat dripping from my thinning hair over my forehead rivulets and into my rheumy eyes. My heart pounds under my Johnny Was t-shirt. I can feel it behind my eyes. My foot taps reflexively…one heart-attacky, two heart-attacky. My pulse is 108. Yikes. The more I obsess about dreadful things, the higher it spikes. My death certificate will read: Death by Anxiety. Please note that I would like deep red roses on my coffin. Yes, I am the Queen of Anxiety. It’s what I do to myself when my life gets too good. When I have solid friendships, a solid tummy, a solid day of 1200 calories. When I've held the sugar, held the fries, the mayo, the syrup, the gravy. Hold, hold, hold, HOLD me. I’m needy even when I'm not asking for something. You can read it in my eyes, my body language. When I get needy, I get lonely and when I get lonely, I eat. I know I'm not alone. Why have a slice of salami when you can have the whole salami (followed by nausea, acid reflux, vomiting)? Why self-sabotage at every good turn? These are questions for therapists, philosophers, my HP. The answer may be that I have no STOP button. I am a bottomless pit. My middle name is MORE. I want more, more and actually MORE, thanks. More this, more that. More all of the above. As I write this sentence, I can feel the urge form in the hole in my heart ... or my stomach ... or my soul ... on repeat, the anti-Scheherazade, I want more—more of the same. Why?  My introduction to the world of eating disorders was my mother's restrictive eating when I was in her womb. She gained a whopping seven pounds in her 40-week pregnancy and was proud of it. She told anyone who would listen about her newly-minted skill: disordered eating whilst gestating.
By definition, then, I was anorexic from conception. Once expelled from her womb, I yearned for breastmilk but she would have none of that. And as a result, I would have none of that. It was bottled Similac and nothing else for this un-thriving infant. To my mother’s way of thinking, breastfeeding—all that slurping—was untidy and inconvenient. I somehow managed to have an unremarkable elementary-school epoch. I ate, played, made a mess and got in trouble, on repeat. Cut to me at age twelve, though, entering the brave new world of debilitating middle-school depression. I flipped the switch overnight, from lively, bright and outgoing preteen to sullen, somnambulist adolescent whose most honed skill was avoiding eye contact. At some point, eating actual food became optional—and the one thing I could control. I vividly recall sitting alone on a bench at my new high school in Culver City looking into a bag of popcorn when it struck me: I could eat one bag of popcorn for lunch, and nothing else, until my senior year. Despite its wholesale lack of nutritional content, popcorn became my only nourishment, day-in, day-out. I essentially swapped out friends for popcorn. Well, that’s not exactly true; popcorn was not my only friend. I had two besties: Evy and Gay. They were cheerleaders, on the student council and in elite social clubs. Social clubs were a thing in the sixties. I was in a social club as well, but it was decidedly not “elite." Evy and Gay struggled with their weight. I'm sure it had nothing to do with the our options that ranged from Chef Boyardee to SpaghettiOs to the wonders of Jell-O, not to mention whole milk with all the hormones, thanks, and frozen TV dinners. I stayed away from Hungry Man and Stouffers. Evy managed her weight by taking amphetamines. I thought that was a nifty thing to do, so I periodically filched uppers from her backpack. I should have noted at that point that popping pills was far too easy for me. Instead I catalogued my new habit as one of survival. I was also keenly harboring a secret under my loose-fitting clothes: my weight teetered between 100 and 105 pounds, and I couldn’t get thin enough. I gave up my popcorn diet when I entered college at UC Berkeley and turned to drugs to keep my despondence at bay. Pop, pop, pop—stolen, prescribed (mine or someone else's), street—I was not particular. Seminally, my lovely internist steered me to Percodan, an opioid, to relieve my cramps. It didn’t help the menstrual cramps I didn’t have, but it sure helped my depression. It also tamped down my appetite. I was light years ahead of Ozempic, just sayin'. Some days, I'd limit myself to one slice of Kraft American cheese. What was left of me, having winnowed myself down to 96 pounds by the end of freshman year, was often loathe to leave my residence hall for fear of others thinking: Look how fat she is. I could count the ribs on my back which resembled a xylophone. Ding. Ding. Dead inside. The mind, once weaponized, can wreak havoc on decision making. Mine was no exception. Over time, I leaned into my drug of choice, Valium, rationalizing that it was better to sleep than perpetually bounce around, unfocused. Never mind the addiction properties of my legit script! Opioids were not hard to come by back in the day and were practically state-sponsored. We've all seen Mad Men. The print ads were legion. It was easier to keep us medicated than to deal with us, after all. My parents wanted me to be a teacher, a nurse or a secretary, none of which interested me. My interests, however, took a backseat to my parents' expectations, so (un)naturally I became a teacher. Deep down, I wanted to be a journalist. Without warning them, I enrolled in USC's journalism school. Upon arrival to USC, I had effectively swapped out three square meals a day for Valium. Too much Valium, hordes in fact. Crutch had a new name. I always had my yellow and blue buddies with me, along with the illusion that they would get me through anything. But that was a misguided falsehood. I was so terrified of life. I floated in an anorexic haze for 20 years before breaking the spell in 1983 when driving by a McDonald’s. I wonder what that would taste like in my mouth. I ordered a Big Mac, fries and a Diet Coke—of course a Diet Coke. The Diet Coke was the vestige of my anorexia; the Big Mac was the harbinger to my new eating disorder. Apparently, it was crucial to carry out the dye that was cast in my DNA. While I can't blame my mother entirely, I can cast aspersions. She made me. The New Me, at age 34, loved food without limit. I packed on the pounds. There was a new Char in town ... .  (Please know this is tongue-in-cheek; I'm nothing is not self-aware at age 78.) I live in Marin County, California, otherwise known as the place white privileged people go to flex, procreate and cultivate ostensibly perfect selves and families. It's a county shot-full with the promise of never having to do something for your actual, capital-S Self because others (sometimes related, most other times paid help) have taken care of it in advance, thank you. There was no getting around the fact that the road had been paved for most of us at birth. So it was much to my surprise when I arrived at my first stint of rehab, at Olympia House, only to learn that room service was not a thing. What do you mean there's no room service? This is Marin County! Don’t you know who I am? In point of fact, I was the emerging Coloring Diva, my then-as-yet-launched identity of choice. Curated, Altruistic. Intentional. I aspired to help others help themselves while being calm, present and artistic. In the meantime, though, I was Charlene, the addict, and that part they knew. Upon arrival, I also queried as to whether the amenities at the grossly-overpriced program included valet services and/or car rental. Mine were reasonable inquiries in my estimation given the price tag. I was new to this alt-reality. The intake coordinator was not amused. Nyet, nyet and nyet, Helga responded with her eyes. Helga turned out to be a ray of sunshine at the tragically mis-coined Olympia House. I somehow survived eight weeks of group, group meals, group circles, group activities, group reflections. I was removed from the human race, yet immersed with participants with whom I had nothing in common, other than our addiction. On Day 57, I was ushered out the door, thankfully. Because I was riding high on being good, I rented a mid-sized car that took me directly to my next stop: an SLE called Full Circle. I had the same questions for the stoic, battle-tested customer host. Who was going to make my bed, make my meals and wash my clothes and otherwise handle the domestic drudgeries of life? My host had no response behind her dead eyes. This was a long time ago, so a couple hours later, having unpacked my one bag in my 10 x 12 room, I was able to page with purpose through the yellow pages directory that lived on a table in a common room. It was scored in Sharpie: "DO NOT TAKE". The only listing under "maid service" was Merry Maids. This would not do. Then it struck me. Maybe my Los Angeles housekeeper would be willing to move up north? She wasn’t merry, but she could fold clothes like no other. I called her that night from our shared phone. "Hi Rosa, it's me Char. I've relocated to a place in Marin that doesn't offer amenities. Any chance you want to relocate for a few months? All expenses paid!" She didn't miss a beat. "Of course, Miss Char." I was delighted. My dilemma was over, problem solved. I was delighted. She arrived the next day. We were two peas in a pod: one room for Rosa, one room for me. Dum de dum dum … drum roll. The residents at Full Circle were taken aback that someone would hire a housekeeper. I avoided eye contact. Over time, they accepted my eccentricities and me. I’ve since checked around, and most SLE tenants don’t bring their own housekeepers. Things went pretty well with Rosa and me, but a few cracks in the wall appeared. She was not quite as merry as I’d hoped and who could blame her? After three months of living in Full Circle, I itched to get out and away from such close quarters and decided to live in a 2700-square-foot, single-family dwelling on the water with adorable quacking ducks. This was truly a mini-mansion unlike any home the "Apartment Gal" had ever known. I was, in the blink of an eye, free at last. Six months prior, I was checking into rehab. Could I handle freedom? A home? Would it swallow me up? Did I deserve it? Would I fade into the background as I had done so many times before? The answers soon became self-evident.  Photo by Levi Stute on Unsplash
God, I offer myself to thee to build with me and do with me as thou will. Relieve me of the bondage self so that I may do thy will. As mentioned, I have the Third Step Prayer on repeat in my mind, and yet ... I self-sabotage. Why can't I just relax? I know enough to know that acceptance is the solution to all our problems. For example, if I could just accept that I'm 78 and need caretakers, most of whom are kind when they aren't betraying me. I won't name names. Okay I will: it was Jaime (not his real name; he knows who he is). He betrayed me but he betrayed himself first. Cliff, my weekly massage therapist who thankfully makes house calls, recently proclaimed that my fascia, especially in my feet and calves, is very tight. This tracks because my feet are often numb. Numb fun in old age does not require drugs. The body takes care of it! It may be my body's way of signaling that I need space. I’m maxed out and all set with Lucky, my superhero dog, and my right-hand man, Whender. I love them both. At 78, I'm proud of the fact that while I walk like an oldster, I don't yet need a cane. I despise canes. Too on-the-nose symbolic of a crutch. As in, I can't make it through this life, from room to room or place to place, and I need a damn crutch to lean my heavy heart on. No thank you. I do have to concede that my memory is fading (Charlene who?), which is in part why I'm trying to get it all on the page. A life memorialized. Old-age indignities are legion. The gift that keeps on giving. Have I mentioned that my neck is stiff? What does that mean, what does that represent? It hurts when I bend it to write. I'm at odds with myself most of the time, especially while trying to be productive. What would Freud say about that? He would have a field day with my anxiety. I know when my blood pressure spikes because my neck locks up. I become a corpse with an unlikely beating heart. Motionless, depressed and shot through with pain. From age 50 to 65, I dodged aches and pains with antipsychotic medication that I took every morning. I genuflected to the pharmaceutical companies. It was a time-limited relationship—one that would succumb to reality. -  Some days, I wonder if my wonderful Lucky doesn’t like me very much. I must be challenging, what with my unpredictable and inconvenient mood swings. Yet when I’m acutely stressed, he will not leave my side. He leans in. Whether on my lap in the car or under my feet at the table, he's there, without fail. A divine, constant presence. I can't pinpoint what’s intriguing about that, but he’s a dog. I don’t have to know. I just have to receive.
Sometimes Lucky lying next to me is all that I need, I love him so much. Who knew?  In AA, we learn the Third Step Prayer: God, I offer myself to thee to build with me and do with me as thou will relieve me of a bondage of self that I may better do thy will. Take away my difficulties that victory over them may bear witness to those I would help of thy power, thy love and thy way of life. May I do thy will always. The accompanying third step is "made a decision to turn our will and our lives over to the care of God as we understood him." The step, and the accompanying prayer, are an invitation to gratitude, a dash of panic and a recursive, internal dialogue with my Higher Power ("HP"), which is what I call God. Per usual, I try to deflect meaning with levity. The loop usually goes something like this: HP to me: So you want to be a stand-up comedian? Sorry too late, that train has left the station. Now, what do you really want? Me to HP: Dear God, I feel terrified and need your help now. Yes, little Char needs your help. Help help help is what I want. HP to me: What would you do next? Face the music? Tired of living inauthentically? Me to HP: I at least want a nibble out of life. I won’t hurt anyone, but myself. I promise. HP to me: And so it shall be. Get out of your own way. Go through the gates of releasing and unleashing ... and get a dog. In 2021, mid-pandemic, I heeded my HP's edict and got an eight-month old Cavalier King Charles Spaniel. At $40,000, he was a bargain. A regal breed for a Jewish princess. I named him Lucky, but I was the lucky one. He taught me how to love again. |
CharleneThe truth hurts. Archives
December 2024
Categories |
RSS Feed
