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When my parents were elderly, their mantra was: Find me a good doctor. Now that I’m elderly, I know what they were talking about. It is not easy finding a new doctor who also happens to be compassionate and understanding. A few years ago, I found her though. Dr. Dean was a dream. I liked her immediately. I was convinced she was my medical soulmate. I was in love! She returned my calls posthaste and made home visits. When I was admitted to the hospital, she took the time to visit me. I may be the easiest patient (okay, that may be an understatement), but as a concierge doctor, I'm paying her a hefty annual fee to go above and beyond. As concierge doctors go, she is somewhat "affordable" at $10,000 dollars per year. I say that because concierge doctors in Los Angeles cost $40,000 per year. I know because I forked it over. What did I get for $40,000 a year? Not much. It turns out that recovering addicts are not treated altogether kindly by medical professionals, even grossly overpaid personal doctors. Dr. Dean was different—I was sure of it. Until, that is, my most recent dilemma. We've been over this, I know, but it bears repeating. Parkinson's and sleeplessness go hand in hand. Not sleeping is not my fault and neither is Parkinson's, which I won in the genetic lottery. Thanks again, Dad! Naturally, I turned to my go-to, Dr. Dean, to request sleep medication. She she was understandably hesitant to prescribe anything that may be addictive. I reassured her: I have a proven record of being clean and sober. I have been sober for 40 years with one relapse seven years ago. I've got this. I'm sorry, but no, she said, looking at her laptop, rather than into my eyes, heart and soul. My now unconcerned soulmate was joining the rank and file in punishing me for my addiction. She knows the unrelenting sleep disturbance is destroying my life and yet...no compassion. She continued, Well, so what? You don’t sleep for a couple of days and then you will eventually fall asleep. Not true, I countered, and what about my depression? I'm at my wit's end. She kindly suggested that I go home, stop eating and off myself. I may have misheard her, sure. But in the meantime, I will prioritize my search for a new, good doctor, channeling my parents, having come full circle.
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This post is not meant to be a pity party. It's meant to help me process grief. I have struggled to accept that I have Parkinson’s, which is bad enough. But a friend recently stepped out of my life because of it, which is worse. For three years, Carol (not her real name) was an integral part of my life as my mobility trainer, garden consultant and friend. But not necessarily in that order. Or so I thought. Carol was referred to me by my therapist. My therapist is a connector who seemingly knows everyone on the planet. When Carol initially called me, I was slow to warm, unimpressed. (Being unimpressed may be a defensive strategy on my part; I see that now. If I don't let people in, I can't get hurt.) After several months pondering the situation, I decided to give her a whirl. Over the course of several visits, Carol's role in my life blossomed and grew, like the vines on my trellis. She helped me move and feel better. She gave me new appreciation for tending to my beloved garden. Her green thumb, keen listening skills and vulnerability led to genuine connection. We multitasked, tending to my disease, my backyard and our friendship, all at one go, a couple times a week. Talking about everything under the sun (pun intended) while nurturing roses filled my cup. I felt like I really knew her and could be myself, neuroses and all. When my disease (Parkinson's, not addiction) took a turn for the worse, it became difficult for me to do the mobility regimen without pain. I struggled to sleep and became more depressed. Sometimes I couldn’t help but fall asleep mid-mobility exercise…one, two, three, conk. I’d be out cold. Carol's visits naturally became more social and less structured. I depended on her support. I see now that was a mistake. Parkinson's is a progressive disease that (unfortunately) doesn't kill you. The main cause of death for people afflicted with Parkinson's is asphyxiation pneumonia, which I've beaten once. I'm not sure I could overcome it again. My nine lives seem to be dwindling. My point being that I didn't intend or decide to become less mobile, or unable to stay awake during my sessions with Carol. It was not personal. Nonetheless, in all of her compassionate wisdom, Carol eventually shared she didn’t want to work with me anymore. Since I really wasn’t up for mobility, she had no reason to continue to see me. That was a shocker. I was under the illusion that we were friends and that our relationship was less transactional than based on love and trust. It feels like she bailed on me (and the flowers) when we needed her most. Granted, I didn't beg her to stay and may have wanted her to read my mind and then change her mind. But I was back in my shell at that point, guarded and girded. As my disease progresses, it will only get worse, not better. My fear is that people will leave me because I am too much of a burden. Do I miss Carol? Of course. Do I blame her? I’m not sure. I just know it is a terrible loss. She was an important part of my support team, and now she is gone. Goodbye Carol. As I write, Lucky, my dog regards me with his unconditionally loving eyes. Depressed, immobile, growing or not, Lucky has my back. I'm grateful for that...and my tender roses.  Photo by Aaron Burden on Unsplash
December 2019 Female friends come into my life and then they leave. When they do, it feels like a break-up. Take Debby for example. I was excited to go wedding dress shopping with her. Her nuptials were right around the corner (eleven months later), so time was of the essence. And yet—she kept canceling our plans. "Sick," "tired," "double-booked," etc. I finally got the message. I vented to others about it but couldn't let it go. When I texted her, What is going on with us?, her response (a day later) cut to my core. We are just not as close as we used to be. She was stating the obvious and undeniable truth, but it didn't make it easier. I took it for what it was: a total rejection. Debby-adjacent friends also subtly inserted distance, especially at her raucous Bingo parties. I was a square peg in a round hole at those gatherings to begin with, but I went anyway because I wanted friends, connection, community. When Debby dusted me, it was not unlike a divorce, and our formerly mutual friends made it clear over time that they were on Team Debby. And why wouldn't they be? She sings opera, has a big personality and throws loud parties with prizes. Next to Debby Do-Gooder, I'm itty-bitty invisible Char Char stuffed with feelings. Feelings (okay, like jealousy) that have nowhere to go. Feelings that sap my energy. The addict-obsessive in me wants to fix my friendship with Debby, to be back in her league. The recovering addict-obsessive in me knows I need to go where I feel loved with people who love the highly-imperfect me...which is proving challenging this holiday season. Ho, ho, home alone, unless we count my cat, Bruno, who appears bored with all aspects of his life, including his owner. I'll take his boredom over her rejection any day of the week.  Me, age four, in my favorite dress for obvious reasons
This dispatch from the intersection of terrified and tired of trying. What really happens when you get sober? You get life (whatever that entails). In my case, that meant that I got the layers of me. During the first decade of my sobriety, I was severely depressed and I couldn’t function. It was suggested by the medical cognoscenti that I deal with my depression without prescribed drugs. I spent years sitting in my apartment in LA with my cats, vegetating. To their credit, the cats were really good listeners. To keep it somewhat interesting (for them), I added crippling anxiety to my woes. Staring at the four walls and sharing with the felines felt safe, so that's what I did. For years on end. Beneath my anxiety and depression ("A&D" in my medical records) miasma and my substance abuse (including but not limited to pills, booze and food), I was the poster woman for a mental health PSA: What not to do. Captive and desperate, I tried to ride out the pain every day. It didn't become me but it governed me, just like the previous substances I used to keep it at bay. Of all the obstacles I've faced or co-created, depression is the killer. It wants you dead or at least thinking about dying. I still get depressed, and when I do it feels like a knife tearing my insides apart. It's visceral. Comprehensively debilitating. The glass is not half empty. It's not even empty. There. Is. No. Glass. The new-ish layer of me is what I'm referring to as my Aging with Parkinson’s Epoch. A distinct and repetitive vision of the future foretold includes scenes of me in a wheelchair, then bedridden, then unable to swallow or eat. The upside is that in the movie, I have no memory of my inability to eat or walk, so I don't miss either. Until I do. And then I forget again, trapped in a loop as I grasp for my memory, which is already going, going, gone. They say in AA God doesn’t give you more than you can handle. Well I’m here to tell you the author of that saying never had major depressive disorder. OR Parkinson’s. If she had, she would have said God doesn't give you more than you can handle unless God decided you deserved to suffer in which case God gives you a shit ton of shit to deal with. Some days I want OUT. The pain, the depression, the Parkinson’s are all too much and I PRAY to end it all. All I want is to not be in pain or depressed. The collective response of my medical team? What's a little pain? Better to die sober. Being drug free and sober will get you into Heaven. I’d have them know that I'm willing to take drugs and go to Hell because I’m already squarely situated in HELL. Is life really a test to see who can hurt the most and survive? Memo to my team (who clearly had a meeting without me to stay on message): Please just give me some drug to kill the pain and the depression. Is that asking too much? Call me a coward. I hate pain. I want some modicum of relief. They have slow-rolled my requests so far, which was likely designed to make me do some brutally honest, bootstrap reflection. ------------ Alright then ... upon brutally honest, bootstrap reflection, I may know a path forward that doesn't require me to relapse. Before I was diagnosed with Parkinson’s, I was the Coloring Diva. A coloring what, you say? My life in Los Angeles was not stellar. Sure, I was sober for 30 years, but I had a litany of physical and mental issues that led to a life less than ... my intended, divine life. So I pulled up stakes and moved to Northern California. (Author reaches around to pat herself on the back.) It was the best decision ever. Once here, the real me began to emerge. Every day was still a challenge—just trying to make 24 hours sober—but after several years of immersing myself in AA, I decided I heed the clarion call to do something to help others. Being in service of others was my saving grace. Peer-reviewed research confirms this and I was now a poster-woman for something positive. I’m at my best when I am helping others. It makes me feel good ands replaces all of my substances (except chocolate) thanks to dopamine. The notion of the Coloring Diva came to me over time. Art always helped me relax. People (like me) need to decompress. I decided to create a program to help people in need by giving them the tools to color. No wrong answers. No judgment. Just creating and committing to the page. I put together pictures, along with colored pencils, to reduce stress and anxiety while having fun. The program was a big hit, and occupied a lot of my time, until I was diagnosed with Parkinson’s which put a monkey wrench in the Coloring Diva's good intentions. I have not colored since my diagnosis. I’m turning 80 on Valentine’s Day. in the meantime, I am writing a book and reviving the Coloring Diva. My time is running out. I don’t have a clue what my final journey will entail, but part of me knows it's mine to make—equal parts pain, determination, depression and colored pencils.* * The kind the girl in the favorite dress would have used.  I was never comfortable in the same room with my father. In middle school, during my first major depressive dip, he called me fat and lazy and said repeatedly, with authority, that I would have to be a teacher because I was not smart or industrious enough to be a journalist. He should know because he knew everything. If only he had uttered one kind word to make me feel seen, better, loved. Instead, he doused my dreams at every turn. When I got older and spent time with him out of some futile sense of obligation, I couldn’t wait to leave.
When dad's denouement was upon us, he laid in bed, day after day. He could no longer walk, go to the bathroom, eat or swallow. He could listen to talk radio. That was his final act, the only thing his Parkinson's permitted. I was appalled at the sight of this previously larger-then-life man, diminished to passive listener. He went from meeting presidents to being fed through a tube, while listening to the radio. His gaze was indirect; he was already gone from our world, but he didn't want to leave altogether. Visiting him in the hospital during his final days was not unlike visiting a complete stranger. Who was this man? He'd been on the planet 77 years and I hardly knew him. We were so different. He held onto every last breath before finally succumbing in a hospital bed, alone. Pneumonia got him in the end. I’d like to say I grieved for my father, but there was no relationship to grieve, no love lost. He was a superb business man, and a terrible father. Narcissistic, egocentric and always right, he had countless ways to make this only daughter feel unworthy and invisible. For these and countless other reasons, I wasn't able to empathize with my father's old-age agony—until I got Parkinson’s. I’ve been in physical and emotional pain most of my life. As death draws closer with each passing day (dramatic, but true), I should hope I would have the choice to be pain-free, relieved. That hope is at cross-purposes, however, with my reality. I am a recovering drug addict and alcoholic. My bouts of depression have lasted years. I’ve always thought I’d hang around to see how it ends. Some days, it feels like I am in too much pain to see it through. My father would not approve of that attitude. I still hear him--No throwing in the towel! Buck up! Handle it! If I had a chance to have one more conversation with him, I would want him to know that I tried. I wanted to be somebody. Somebody successful. Somebody loved by her father. That was not meant to be. I'd remind him that if children don't feel important to their parents, it is impossible for them to feel important in the world. I know how that conversation would end, though. He would disregard my words, talk over me and remind me that father knows best.  Photo by Lance Reis on Unsplash
Let's talk about opioids. Who said they hurt people? I’m an opioid addict, and I never hurt anyone. Well okay, anyone other than myself. Sure, I landed in the emergency room five times after overdosing on them. I don’t necessarily call that hurting myself. It was like playing some iteration of solitaire, only with my friends Vicodin, Codeine and Morphine. Valium was my initial numbing drug of choice. When opioids merrily came along, they were more efficient (an upgrade if you will) in my path to feeling nothing so I shifted gears, gobbling those pills for years on end. Yet, somehow, I’ve been on the straight and narrow for four decades. Still, my history follows me wherever I go. In my mid-to-late 70s, I made myriad visits to the hospital for inexplicable reasons. Each time, upon entry, the stern hospital triage nurse queried about my drug history. "It's complicated; how much time do you have?" is how I usually responded. You know, to break the ice. Their days are long, but mine are longer. The slogan “once a drug addict always a drug addict” is true. I know that in my bones. And yet ... . When people know you are a former drug addict or alcoholic, they make assumptions about you that are not always true. Some of my best friends are sober, some are not. When does the labeling stop? We are not let off the hook for past digressions. Ever. My current dilemma is this: as an addict suffering from a chronic illness, namely Parkinson's disease* (but for argument's sake, consider cancer, ALS, etc.), should I be denied relief in the form of painkillers? When does the patient get to say to the doctor: ”Enough is enough! Bring on the pain relief measures, including but not limited to opioids!" As of this writing, I am suffering from Parkinson’s and diabetes. It's the opposite of wonder-twin powers activate which is to say it's hell on earth all day, but mostly at night. Who decides who gets pain medicine and who doesn’t? God? Doctors? Me? The correct answer, in these times, is draconian doctors. Since I was diagnosed with Parkinson's in 2022, believe me when I tell you that I've bargained. "What if the drugs are kept under lock and key and only administered through my health team?" "Nope, it may lead to active addiction," Dr. Jane Doe said, depriving me of a dignified, pain-free death yet again. Bullcrap! I wake up every morning in pain (if I was fortunate enough to sleep for a few hours the night before). Insomnia is my cross to bear. Dr. Jane Doe also refuses to give me meds to sleep because, she says, I could become a fall risk. As if I’m not already. Better I should be perpetually tormented by sleeplessness. I should send her video of me pacing throughout my home, startling the dog, at 2 a.m. on the regular. I should share episodes of me falling asleep in the middle of conversations. Insomnia does not bring restorative powers to my system. We all need a strong immune system and insomniacs don’t have one. Now that I am infirm, all I want to do is boost my immunity by getting a good night's sleep while not screaming in pain in the wee hours (to one one, in vain) when my back hurts. I'm a recovering alcoholic who does not want to die in pain. Mea culpa. More power to the people on this planet who have not taken aspirin for pain—who grin and bear it. I’m no better or worse than you despite my labels. For today, I’m a recovering alcoholic/addict who is tired of being in pain and happens to believe that my God approves of pharmaceutical interventions. * a chronic brain disorder that affects movement, mental health, and other systems in the body. er that affects movement, mental health, and other systems in the body  Photo by Yuri Figueiredo on Unsplash
I was shy, scared and forty when I walked into my first AA meeting in search of a safety net. Suffice it to say I did not jump in with both feet. Everything frightened me…people, spiders, Arby’s hamburgers. Yet I persisted with the program that first year, invisible by design. I strategically snuck in late and early out of the hushed rooms. People came to know that the corner chair in the last row was for me. I understood the assignment, as it were, and the fact we got karmic points for participation. Yet I maintained a stone-like detachment, never sharing my experiences, much less my emotions. Not surprisingly, no one threw me that net. Change came for me nonetheless, like it comes for everyone who goes to AA meetings long enough. Wendy, my soon-to-be best friend, made eye-contact while I was studiously avoiding eye contact but also leaning in ever so slightly to convey engagement with the raw, gut-wrenching material. Her spidey-sense registered how frightened and lonely I was. "Hi," she started, "any interest in blowing this pop-stand in favor of a small, women-only meeting at my friend's apartment in West Hollywood?" Sounds terrifying, I thought. "Sure," I said. We drove together the following Wednesday. And every Wednesday thereafter for ten years. The elderly woman who whipped open the door was reminiscent of my mother. The occasion felt formal as evidenced by my stiff spine and quivering upper lip. I resisted the urge to salute our host. “I am Eleanor,” she said, below piercing blue eyes and a shock of gray, majestic waves. Very put together. "Char," I murmured. When she hugged me hello, my carefully-constructed exoskeleton evaporated. I would follow this woman anywhere. Her apartment was nondescript. The people therein were not. Wednesdays became a ritual, a new addiction. I held on for dear life. Eleanor embraced me physically, emotionally and spiritually, unlike a certain mother of mine. I couldn’t wait for Wednesday nights to roll around, so I could get my hugs. I became a first-rate hugger thanks to her. Periodically, she would send me actual letters in the mail (handwritten—on stationary!) telling me how much she loved me. It occurred to me while ripping one open: This is how people love. One of my many fond memories of Eleanor was the fact that despite her world-class hugging, she was no gourmand. Thus, we ate at a nearby restaurant together before each Wednesday meeting. Eleanor love her condiments, drenching her food without exception. When she died, I stopped eating all sauces in solidarity. I didn't want to feel the nagging, stabbing sense of loss each time I indulged in Sriracha. Hindsight is great because you get a new lens. I now understand that Eleanor was my surrogate mother, gifting me two things I never had in my family of origin: belonging and a voice. In my first family, I was the little girl with the big bow in my hair who didn’t know how to open her mouth (having not been encouraged to do so). In my chosen family, I could say it loud and clear and be loved unconditionally. I have Wendy to thank for the introduction to Eleanor, and Eleanor to thank for instilling me with the knowledge that I'm worthy of hugs, love, redemption...and extra sauce.  Photo by Jon Tyson on Unsplash
When you're sick, inside and out, your life is governed by more questions than answers. I'm permanently perplexed. Why me? Why am I anxious, without fail, when the clock strikes six p.m.? Why am I afraid to give myself permission to feel okay for just one damn minute? When will my ruminating, futurecasting, catastrophizing give way to gratitude, serenity, inner peace? What’s going on with me? My handwriting is tiny and getting tinier. It's Lilliputian, for garden gnomes and wood nymphs. It's also a hallmark of Parkinson’s. I command my hand to write bigger letters, but it won't. The synapses are not synapting (not a word, but I like the rhythm of the sentence). More questions. What the hell is happening to my handwriting? What would cure me, of course, is a whole bottle of something other than Tylenol. I'm so over the placebo directive from my phalanx of medical professionals: Take two Tylenol and call me in the morning. It's as if my doctors can't hear the words behind my words. Words like: I want to be loved. I want to be healthy. I want to live. It's been 35 years since I've been laid. They say use it or lose it and I'm afraid I've lost it. Three and half decades is a long time and yet, I'm not altogether lonely. I have people and for that, I'm fortunate. Romance is decidedly overrated and anxiety-inducing for septuagenarians, but secretly I know it would be fun to try. I would be all-in and dress the part, from my Chanel shoes to my Johnny Was tunic, before sharing certain things about myself. The sartorial splendor would perhaps distract my would-be prince from certain inquiries -- like, how's your mental health? How's your physical health? Your brain chemistry? Do you have any mommy issues? Daddy issues? So there it is. I've figured out one thing as least. While being in an intimate relationship would provide a welcome distraction, the would-be suitor's questions would inevitably compound my questions, resulting in a life rife with endless inquiries. It's safer to stay right here, reciting The Serenity Prayer, trying to forget my family-of-origin story while focusing on my chosen family here and now.  Photo by Drew Dempsey on Unsplash
I'm shaking. Out of control. I can barely write. The pen is not doing what my brain wants it to do. I pivot to Lucky during these nocturnal panic episodes. I wonder if he beholds a monster in front of him. I am unrecognizable to myself; he hopefully does not see the me that I see. I long to see the me that was once a young girl with the wide world in front of her. A family with means (if no beating heart). A kingdom for the taking. She swung for the stars and landed on her ass, in rehab. Not once, not twice, but three times (the third not being the charm but rather the bridge to a lesser, more narrow, contained and controlled life sans additives or pill-fueled days). In this particular episode of Nights with Char Char, the nausea precipitates the sweating which, in turn, perpetuates the shaking. A trifecta of attractive attributes. I know the waves will pass but when I'm in it, it feels like I'm drowning, helpless. I consider getting down on my knees (but they don't bend that far) to pray. I would say something like: Forgive me, God, and please help me. Help me relax, relaX, relAX, reLAX, rELAX, RELAX. Help me be more patient with everyone and my dog ... and myself. Help me feel less trapped, suffocated. I'm keenly aware of Step 1: I am powerless and my life has become unmanageable. Spinning in place, I consider riding my stationary bike knowing that I would be tempted to turn on the TV in front of it. I'd stare into the middle distance absorbing news of the outside world which is an unmitigated dumpster fire on every level. That potent reminder would, of course, make me more anxious. God would undoubtedly send me a coded message by way of reply. Something like: Focus on the fact that your blood pressure is okay right now. You're welcome. Please give peace a chance. You're blessed; act like it. The attitude of gratitude is not my natural default, needless to say, so I would appreciate the reminder and promise to try. To do better. To accept the things I cannot change, blah blah. At 4:12 a.m., it dawns on me that my mental illness will utterly defeat me. With that epiphany, I want to crawl into Lucky's crate with him. But my walls are my crate, my container. Why don't I feel safe within them ... in my skin, body, home? I strived for so long to make everything in my house perfect. From the silk curtains to the top-tier dog to the Chanel shoes. In the end it turned out that the only imperfect fixture in my tableau—shaking, sweating and nauseous—was me. God, grant me the serenity to accept the things i cannot change, the courage to change the things I can and the wisdom to know the difference.  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. |
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