I have a disability.
I say that not for you the reader, but really for myself. You see, I am 54 and a half years old, and really haven’t dealt with the fact that I have cerebral palsy.
To be fair, I wasn’t diagnosed until I was 38 years old, when I had to have foot surgery. The surgeon was afraid to cut into the foot without knowing what he was dealing with, so he sent me off to a neurologist, who came back with this finding.
It’s not like I didn’t have issues before I was 38. My parents say they took me to twenty-seven different doctors, which resulted in heel cord surgery when I was extremely young, with the idea that I would walk better. Many doctors wanted to do further surgeries, but, gratefully, my parents passed… I was put on medication, which I had a terrible reaction to, to stop leg spasms. I had at least one doctor tell me I’d end up in a wheelchair by the time I was an adult. I believe that’s when I decided to stop seeing doctors. I think I was in my late teens.
When I first started walking, I had shoes (that I still have) that were altered with a long wooden piece to raise the height. I wore braces for a little while as a child. When I was in elementary school, they wanted to put me in special education classes, though I later was put in gifted classes. I wore lifts in my shoes all the way through high school. Speaking of high school, I was incredibly shy and awkward, and never knew if I was denied dates by girls due to my disability or not. It was an extremely difficult and painful period.
I was told by countless doctors and orthopedic surgeons that I had one leg that was shorter than the other, or that my right hip was higher than the other, which caused me to walk with a pronounced limp. As well, the right side of my body has much less muscle tone than the left, more obvious from the calf muscle as you go up to the bicep. As you can imagine, the diagnosis of cerebral palsy came as quite a shock.
I knew absolutely nothing about it. As I did research on the internet, I learned that, while I had been treated for a structural condition my entire life, CP was a neurological condition. I also learned that there was little to no information about the condition for adults. It was as if you were completely on your own after you reached adolescence. After getting frustrated by the lack of information, I moved on with my life, not really thinking much about my condition and not dealing with the fact that I have a disability.
A few years later, I was diagnosed with osteopenia, a loss of bone mineral density. I found this extremely strange. One, being a male, and two being an ethical vegan for twelve-plus years. Most studies show that osteopenia and, more specifically, osteoporosis are linked to eating animal products. Doing some research on this condition, I discovered that both conditions were indeed linked to CP.
Again, I moved on with my life without giving much thought to the CP.
About six years ago, I was having issues with urinating. I visited a urologist, who, upon doing tests, came back with a diagnosis of a neurogenic bladder. He explained that the condition keeps the bladder from fully being able to empty. He also explained that this was the result of cerebral palsy. When I got home and did some research online, I confirmed that this was tied to the CP.
I know that I will have to have both hips replaced due to the wear and tear of walking with a limp. I have arthritis in both hips. But osteopenia? Neurogenic bladder? What else was I in for?
I had known that my walking was going to continue to deteriorate. It had been already over the past few years, to the point where I really should be using a cane. But: vanity. I wouldn’t get a disabled placard for my car for years, and whenever I use it, I get out of my car and question whether people are wondering if I’m “disabled enough” to deserve the placard. And only maybe a year or two ago did I accept a wheelchair ride at the airport to get through what would have been a long and exhausting walk to the gate.
I found out that UCLA had a program called the UCLA Center for Cerebral Palsy. I found a doctor at UCLA on their website and left her a phone message. She called me back right away and was kind enough to answer my questions. She confirmed that osteoporosis was indeed more common in patients with CP. That signs of aging happen faster than in the population. Organs age more rapidly. Patients have urologic issues. We have more pain and fatigue.
She told me CP patients have post-impairment syndrome symptoms, which are weakness of muscles, arthritis, increased pain, swallowing disorders—symptoms can be coughing after eating and drinking, food stuck in mouth, or recurring pneumonia.
Twenty-five percent of people who could walk as children lose mobility as they age. We may have increased pain, difficulty walking, stiffness in muscles, increased risk of falls, dental health problems, or depression. Our heart and lungs have to work harder, and it can be three to five times harder to complete a task.
In other words, I was fucked.
This phone conversation did not go over well with me. Rather than feeling like I had a good sense of what was to come, I wanted to pull the sheets over my head and go to sleep forever.
For the next three years or so, I was pretty depressed about this potential future.
That brings me to the five-day silent Theravada Buddhist meditation retreat that I completed on August 17, 2019. I went into the retreat with no expectations. I had hoped for some insights, of course, but put no pressure on myself. The retreat was in a beautiful setting, Big Bear City, California, amongst thousands of 1,000-year-old sugar pine trees that literally smelled like cupcakes. Vegan cupcakes, of course.
When we received the schedule for the five-day retreat, I saw that there would be eight thirty-minute meditation sits per day for the three full days and multiple walking meditations. Walking! My nemesis! I had decisions to make. The first was, would I sit on a cushion for the sits? Could my back and hips endure that many sits in a day? I had gone on a five-day retreat three months earlier that was put on for those who work in the animal welfare community. At that retreat I exclusively sat in a chair, and did not even attempt the walking meditation periods. Walking is difficult enough for me. It’s extremely laborious, and balancing is not easy these days. In a walking meditation, the idea is to walk very consciously and slowly. You pay attention to each step and keep your attention looking forward. Walking while practicing inner peace? That’s like the old saying about walking and chewing gum.
I was assigned Cabin A, which was closest to the meditation hall, because of my CP, which I was very appreciative of. The hall was still a bit of a walk down a relatively steep slope. Our cabin was farthest from the dining hall.
I made the decision that I would try to sit on the cushion for the meditation periods. Worse case, I would switch over to a chair if it became too strenuous. There were three teachers on the retreat and only twenty-three retreatants participating, so it was quite intimate. Right away, I felt insecure about my disability. I felt like I stood out and wondered if people were watching me, wondering what my condition was, or if I was OK. I had a rough time balancing my body each time I would go to sit on the cushion and had an extremely difficult time getting up from the cushion. After each sit I had to do a lot of stretching. (To be fair, after so many long sits, so did everyone else.)
When I sit, I am unable to place my hips and knees on the mat. One of the teachers approached and helped me by placing cushions under each of my hips and having me hold an additional cushion while meditating. This helped me to keep my back straight, which kept me from straining. The next day she added a meditation chair contraption, which further aided me.
After the first sit on day two, the moment of truth arrived: walking meditation. Would I skip it, or at least give it a go? I made the decision to try it. I was here, and I was going to be present with every experience, whether it was positive, negative, or neutral.
I found a spot that was free and began to walk. It was a mess. I would lose my balance after a couple of steps, and get really frustrated with myself. But I would just start over again. I would go from moments of shame and anger to feeling proud of myself for trying, while looking around to see if anyone was watching me. It was quite the exercise emotionally and spiritually.
Breakfast, lunch, and dinner all came after sits in the meditation hall. Either the caretaker or the retreat manager would provide golf cart rides up to the dining hall. At first, I was a bit hesitant to take a ride. I don’t know if it was a “pride thing” or something else.
As the days went by, I gladly accepted the golf cart rides.
I believe it was day three, though it’s hard to recall when you rise at 5 a.m. for a fifteen-and-a-half-hour day, when I was resting in bed, on my back, and had a moment. It’s not easy to explain, but I had a realization that I have been at war with my body since I have been conscious that I have a body. I have hated my body. Between the cerebral palsy, migraines, depression, osteopenia, neurogenic bladder, arthritic hips, and many more conditions, plus what’s to come, I have had nothing but disgust for my body. I have lived my life in denial of my body and my disability. I’ve wanted nothing to do with my body. It’s as if I have been living outside of my body.
And in that moment, I came to peace with my body. I decided to end the war. Or it was decided for me. As I said, it was complicated. I decided that I was done. I was finished hating my body. Being at war with my body had caused me so much suffering. I had been hurting myself for so many years. Needlessly.
I decided right there and then, even if my body rebels, if migraines hit, if I fall while I’m walking, if, or more likely, as additional conditions arise from the CP, it’s OK. This is me. I own this body. I own this disability. It’s part of who I am. I may not be able to control or stop pain from entering my body or my life, but I can at least minimize the suffering that I allow. And I realized that whether or not anyone is looking at my body, judging or curious, ultimately it doesn’t matter. It’s really about how I feel.
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