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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. |
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