Parkinson’s Disease: My Journey to Create Beauty from Pain

Parkinson’s Disease: My Journey to Create Beauty from Pain

A story about making the most of something I never wanted.

Having a body is weird. We find ourselves in these meaty suits that enable us to navigate and experience the physical world. They’re how other people and animals recognize us, and they’re monumental parts of how we experience and understand ourselves. It’s unsurprising that our bodies become such huge parts of our identities and so dramatically shape our lives.

One of my earliest memories is of being three years old and knowing what I was on this planet to experience. I was here to be a musician, and when I got bigger I was going to fall in love with the most amazing woman I’d ever met. We’d be married, and happily ever after into the sunset we’d go. 

The life that little Ryan saw for himself was going to be so amazing, even unicorns would be jealous.

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But when I was born, there was an insanity growing in my parents that would push me far off my desired path. (If you’ve read my essays about my mother’s mental health, my father’s child molestation crimes, and the religious cult they raised me in, you’ll begin to understand what I mean.) As I got older and began noticing how deeply their abuse and neglect were affecting me, I made a pact with myself: I am not going to be like these people. 

What I was seeing around me felt very wrong. I had no idea what the healthy alternative looked like, but I was determined to figure it out. Then I would be safe. Then I could have the life I wanted. Then I’d be happy.

The autobiographical stories that I’ve written and shared on this site over the past eighteen months have been exceedingly difficult and painful to write. I’ve dug back into some of the darkest parts of my life trying to find a thread of sense and meaning in it all so that I could share something meaningful with you. It’s been very scary to open up in this way, but I realized that if I don’t arrive at a place where I’m comfortable with it all being seen and heard I can’t escape its hold on me. 

The last big step in this coming-out-of-the-closet party is a story about developing young-onset Parkinson’s disease when I was twenty-six.

Throughout my attempts to understand all I’ve experienced, I’ve found myself continually going back to the time I was living in Washington. This period was such a huge demarcation point in my life. It represents the first time I had been safely removed from my family. It marks the first time I had breathing room to begin uncovering and discovering the person inside of me. And it was the first time I was able to start identifying all of the damage that had been done. 

As my time in Seattle came to a close, a door opened back in Los Angeles. I do not have warm feelings for California, but returning there felt like a weird certificate of accomplishment. The anguish, fear, and hatred that I carried from there to Washington was no longer with me. I felt hopeful, and I believed I had finally turned the corner and broken through the barriers of my past. 

This was not just a corner I had turned; it was THE corner. I was finally going to become the person I’d always felt was inside of me, but was never able to embody. I was going to step into the world in a big way as the really real me. And I thought I was closer than ever to the love and success that had always inspired me to stay alive and continue fighting. 

But frequently, the things that we think or believe reveal themselves to not reflect reality. 

Within a few days of being back in California, I noticed that a spot on the left side of my chest had gone numb. It was about the size of a golfball. I very distinctly remember looking down and poking at it in an amused way, thinking, “That’s weird… what’s that about?”

Over the next few days, the patch of numbness got a lot bigger, and then it started to hurt. I wondered how something could be numb and hurt at the same time. It felt like a vice was crushing my ribs. Then the patch spread from my chest through to my back, and then began working its way down into my leg. I watched this thing happening to me, but had no idea what it was. Walking started to become very difficult. Within a matter of weeks, each step I took required every ounce of my attention so that I didn’t trip over my increasingly deadened leg and fall. Before this, I was an able-bodied twenty-something. Suddenly, paralysis was replacing the effortless control I’d always known, and it was happening very fast. 

I lay in bed alone one night, crying out of frustration and fear. The toes on my left foot felt as though they’d been sewn together, and it was really uncomfortable. I lay there using all of my strength trying to just move them slightly to relieve the discomfort, but there was nothing. It was like trying to lift a dead elephant, and I had frustrated and exhausted myself to the point of tears. 

I was so scared of what was happening to me, but even more afraid of letting people know what I was experiencing. I believed that, if they knew, they’d see me as fundamentally broken and useless, and they’d abandon me. I couldn’t bear the idea of losing the few people I had around me, so I kept what was happening a secret. 

This secret was fairly easy to keep, because this spreading illness was mostly invisible. No one could see that when I reached into my pocket to find my keys, I couldn’t tell if I was touching them—even though I could hear them jangle—because I had no feeling in my hand; I hadn’t lost the motor skills in my hands, but I’d lost my sense of touch. No one could see that I had gone completely deaf in my right ear, or how much this scared me because it had taken 50% of music away from me. They couldn’t see that I was constantly nauseous because the world felt as if it were spinning in circles around me. They couldn’t see that my vision was often doubled or that I was having trouble reading because my eyes were gently shaking back and forth uncontrollably. At work, sitting at my desk, people couldn’t see how limited my mobility had become. 

These symptoms would go on for weeks, and then some of them would just mysteriously disappear. Frequently, other symptoms would arrive and remove another part of me. But my walking posed the greatest threat to my secret. My left leg felt as though it had been coated with lead and injected with novocain. Each step I took through the office required every ounce of my focus. “Don’t fall down. Don’t fall down. Don’t fall down.” Some version of that was repeated in my head with every step. I managed this well enough, but then I started to have trouble speaking. 

The first time this ever happened, I was talking to a coworker, and I noticed that everything inside of me was starting to lock up and constrict. I couldn’t move any of the parts that allowed me to speak—it was as though I had touched an exposed electrical wire. After several moments it would release me and I would be able to communicate, but inevitably the invisible wire would find me again. I had to time my speaking and pauses to coincide with these moments of speechlessness so that they seemed like deliberate breaks in what I was saying. 

I did tell a few friends and people in my family what was happening to me, but they either made it about themselves or just didn’t understand or care. I was struggling as I walked down the street with my big brother one afternoon and tried to find some understanding and comfort in him. At the time he was obsessed with The Secret and his beliefs about "The Law of Attraction,” and took the opportunity to tell me that I was basically creating this for myself. He said that I just had to “find the thought” in my mind that was creating all of this, and it would go away.

My mother was also part of the small group that I confided in. She blamed her husband’s presence in our lives for having “done this” to me, and saw it as confirmation of her belief that life was unfair and that we were somehow cursed. She told me that if she ever was able to prove who did this to me, she’d kill them. I didn’t say this to her out loud, but I immediately thought, “If this is somehow linked to abuse from anyone, that person is you.”

I stopped telling people about it after this. It wasn’t until I published the story about my father ten years later that I realized another huge aspect of why I decided to hide this from everyone. Packaged with my parents’ abusive treatment when I was younger was a denial that anything was happening. If I ever expressed hurt or anger in response to their treatment, they’d deny it, and the abuse would intensify. It convinced me that what I was seeing somehow wasn’t happening, and that no one really cared about me. I became very good at shutting up, hiding, and covering over and even doubting my reality. 

I spent three years in California trying to quietly identify what was happening to me and reverse it, but my symptoms and experiences just kept getting worse. Navigating this terrible illness while also living in a place I hated was becoming too much, so I decided to leave. The day I left Los Angeles for Portland, Oregon, I could barely walk. 

A picture of Pinkertons McGraw in our moving truck, somewhere in Northern California.

A picture of Pinkertons McGraw in our moving truck, somewhere in Northern California.

When I arrived in Portland, the movers I had hired filled my new apartment with all of the boxes I’d brought with me. As I was unpacking one night, I dropped something, and as I leaned down to pick it up I noticed all of my strength leaving my body. I slowly collapsed to the floor, unable to stop my descent or pick myself back up. I just lay there with my face on the hardwood, staring at the bottom of boxes and thinking, “Uhh… now what do I do?”

For several months, walking the fifteen feet from my living room to the bathroom left me feeling as though I’d just finished a day of grueling manual labor. I’d drag myself across those few feet to use the bathroom, and then be completely depleted of all strength and energy. I’d struggle to make it another few feet to my bed so I could lie down, and I’d fall into a sort of pain-filled coma as my body tried to regain some strength. 

Every day I’d sit at the desk in my living room, trying to decide how I’d spend my meager daily ration of energy, but it became harder and harder to care. It wasn’t just because I was tired and felt as though poison were seeping through my whole body; it was because my emotions were fading away. The illness had begun to affect my hormones in a way that left me unable to understand my motivation for anything I used to love doing. It was like I was looking at a favorite meal, but had an overstuffed stomach and no desire to eat. Somewhere in the background, I could recognize that it was something I used to love, but I felt no pull in me toward anything. Just an all-consuming gray emptiness where my passions, ambitions, and desires used to live. 

I’d occasionally try to play guitar to see if I could reconnect with something that was important to me. Music has always been one of my deepest sources of joy, and when I was younger I wrote and played guitar for several bands. But now, within minutes of playing, my left hand would become so weak that my fingers would lose all strength and just curl inward like a dead spider. 

My body was literally taking away my ability to play music. This insult to injury was incomprehensible to me.

 
Me, performing in Hollywood, CA. This was shortly after I first began experiencing Parkinson’s disease. Photo by Emilie Elizabeth (2006)

Me, performing in Hollywood, CA. This was shortly after I first began experiencing Parkinson’s disease. Photo by Emilie Elizabeth (2006)

 

I watched people and the world around me change and grow. Marriages happened, children were born, adventures were taken—but there was nothing like that for me. I was too sick to participate, but alive enough to watch opportunities and life pass by me. The only emotions I could feel for a long time were fear and a seething resentment for what was happening. 

I had dreams. I wanted a fulfilling career. I wanted a family. I wanted a romantic partner to explore life with and shower with love. I wanted to adventure through the world with her and be free of what I had inherited from my parents. But I was far too sick to participate in any of this. Instead I was struggling to just survive, barely able to walk or see, and terrified to let anyone know.

My mind felt venomous. I was filled with rage at life and the world. I was furious at my parents for being such monstrous failures to the extent that they rendered me alone with no one to turn to during this nightmare. I was furious at the girl I had dated during this dark period who repeatedly let me know how inconvenient and broken she found me. I was furious that I had been so desperate for companionship that I allowed myself to be exposed to and so deeply wounded by her abuse. I was furious at the able-bodied people around me who didn’t realize how great they had it. I was furious because all of my hard work to overcome my early life experiences hadn’t paid off and brought me happiness.

I was a shell of who I’d fought so hard to become, and I felt a deep, biting sense of betrayal. Life had cheated me, and I wanted to burn everything down. But underneath my fear and fury there was still a small, persistent voice I’ve never understood. At my core was a refusal to give up or be beaten by any of this. 

“Why am I still trying? Why can’t I just give up?” I’ve asked myself those questions for years now, but it was only recently that I was able to find an answer. As I was thumbing through the photo albums my mother made for me, trying to piece things together for my story about her, I came across a picture of myself from when I was about three years old. I’m wearing my father’s socks with a pillowcase tied around my neck like a little super hero. I thought, “I wonder what his super power was,” and it struck me. His super power is an ability to create beauty out of ugliness.

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I realized that my entire life has been propelled by a desire to create and experience beauty, even if the ingredients I had to work with were tainted by senseless ugliness. I remembered that I had promised myself when I was a tiny kid that the craziness of my parents would not dictate what my life could be. My circumstances would not determine who I could become. And I never stopped fighting to keep that promise. 

I started wondering what I would say to that little kid in the picture if I could travel back in time. Would I tell him that his dreams were never going to come true? Would I tell him that life is cruel and senseless? Would I tell him that there’s no point going on because nothing ever really works out? 

No. I would make sure he knew how strong he is. I would tell him that he matters. I would tell him that life is complex and it can be really hard sometimes, but that doesn’t mean that he should ever give up. I would tell him that his choices are what makes him who he is, not his family or what happens to him. I would tell him that even if his parents couldn’t truly love him, I love him. That I believe in him, and that he could always count on me being there to support him. Even when things became darkest. 

And because all of that is true, there’s no way I could ever abandon myself and devalue all the hard work that little kid put into addressing what was ahead of him.

The honest truth for me is that I have not enjoyed much of my life. I do not have a family. I did not have a happy childhood or fond memories of relationships that I’ve looked back on for encouragement and hope in times of pain and hardship. But I am still alive, and as long as I am, I’m never going to give up. 

I look back now on what I accomplished despite the horrors of Parkinson’s disease, and I’m astounded by how powerful intention and focus can be. During the worst of this all, I moved to a new state, alone. I taught myself photography and continued improving my craft of graphic design. I created my first children’s product line, launched an ambitious KickStarter campaign, attracted investors, and had the opportunity to manufacture 30,000 stuffed animals. I’ve worked full-time for two different companies in a marketing and design capacity, and most days gave so much of my energy there that I was barely able to make it back home. I launched this website and dug into the darkest, most painful things in my life with the intention of sharing them because I wanted to connect with others and be seen for who I am. I’ve worked to identify who this person is that I find myself being, and who I might become going forward. I’ve worked very hard to reconnect with and pursue my dreams. And I’ve made the types of friendships that finally have filled in the gaping holes in the love and support I was so starving for during the majority of my life. 

These eleven years living with Parkinson’s have been truly terrible, but I have consistently worked to recover from this crippling disability and I’ve made great gains. I’ve learned a tremendous amount about the human body and it’s relationship to the mind, and I’ve recovered to a degree—psychologically and physiologically—that has been described by professionals as virtually “miraculous.” All without ever taking Parkinson’s drugs or other medications that would only mask the symptoms. 

It’s not my intention to throw a celebratory parade in my honor, but there are other people like me in the world who need to be aware of what others have been able to accomplish through hard work and unrelenting intention. Without seeing that something is possible, it can remain inaccessible to many. It’s not unlike the four minute mile.

I am not entirely recovered yet, but my improvement is dramatic. The initial mountain that had to be deconstructed and removed rock-by-rock from my path was physiological. The one that I’m clearing now is psychogenic, largely stemming from the terrorizing and abuse of my childhood. My writing and sharing of these stories with you has been an unbelievably powerful tool for self-acceptance, understanding, and moving on. 

Parkinson’s isn’t just an inconvenience; it’s something that steals you from yourself. One of the hardest things I’ve ever faced is learning to accept this person I never wanted to be and this life I never wanted to live, but we all face hardships. My life is what it is, and it’s mine. This is my slice of the human experience. It’s what was in the existential playbook I was handed at birth, and it’s my turd; I can either roll around in it and get all stinky, or I can use it as fertilizer to feed the growth of something beautiful.

I spent my life fighting tooth and nail for things that didn’t happen when I hoped they would, and I can’t change that. But what I can do is never give up, and keep looking for what I can create now. Perpetually. For as long as I’m alive. And that’s what I’m going to do. Because I was a super hero once, and I don’t want to lose that.

Until next time, be kind to yourself, to each other, and venture fearlessly into the awesomeness that is your life.