About the Arts
Bill DeYoung’s blog
There are frequently many or a few strokes associated with the recovery phase from a subarachnoid hemorrhage. It is due to these strokes that Bill still has persistent ataxia, tremor, some rigidity of extremities, personality changes and some behavior problems. His youth and determination should help him overcome many of these problems.
Whether or not he will ever recover completely without any residual deficit is very uncertain … There is no known drug or form of therapy which seems to speed up the recovery and there has been no proven drug which will really diminish the damaging effect of a subarachnoid hemorrhage.
Whenever any improvement is apparent it should be pointed out. He is very frightened and apprehensive and will need a lot of encouragement. As he begins to see some improvement himself hopefully much of his depression will clear.
R. Hurston Babcock, M.D., P.A.
Letter to E.L. DeYoung (my father)
Oct. 3, 1978
Back at the house, they walked me up the short hallway to Mom and Dad’s room, where I was to spend the first few weeks of recovery. There was a queen bed there, the better to accommodate my lanky six-foot-two-inches. I suppose my parents each took one of the other bedrooms.
After so long lying prone, muscles atrophy, meaning they’ve been neglected and so don’t work too terribly well. They’re rubbery. So standing up, walking across the room, even using the bathroom, they were all out of the question. Someone, usually Mom, would have to come in and support me through all of it.
She would stand me up, and my head would spin. It was like going from stone sober to dead drunk in a heartbeat. A helpless feeling compounded with another helpless feeling.
My friend Chris, who lived not too far away, was recruited to help me into the shower every other day. It was terribly awkward for him, I know, but he’d wear a bathing suit, hold me up under the water, and we’d get through it. I was embarrassed, but by then I’d become used to being dependent.
Somebody came over and cut my long hair to a manageable length.
One day a physical therapist arrived. They’d hired him through the hospital. He was tall, and had blonde hair, and that’s all I remember about him – except that he came into my room, on that first day, with a worn paperback copy of a book called Joni – the story of a quadriplegic teenager who’d leaned to adapt. On the cover, she held a paintbrush in her teeth and was smiling at the camera.
Clearly, the guy didn’t know what he’d find when he met me, and brought the book as inspiring evidence that people with catastrophic injuries can still lead productive lives.
The cover of that book is burned into my mind, because it was the first time I was forced to really think about where I was headed, whether I’d heal up and get back into my own skin – continue with life as I knew it – or wind up in a wheelchair with a paintbrush clamped between my teeth.
But the physical therapy guy was great. Every day, he got me out of that bed, stood me up and held onto me until I began to regain my balance. He talked to me. We laughed. He had me sit on a big inflated rubber ball with a handle – it was called a kangaroo ball, I remember – and roll back and forth, balancing with my legs. I’d walk stiff-legged up and down the hall, over and over, with my arms on his shoulders.
On a day he wasn’t there, after a few weeks of therapy, I hauled myself out of the bed, walked slowly down the narrow hall, balancing with my hands on the walls, walked through the kitchen and dining room holding onto furniture, and presented myself to Mom, who was in her usual chair, watching TV in the Florida Room. I stood there smiling silently. When she saw me, we both exploded with tears of joy.
So I was more or less ambulatory after that, crashing from one room to the next, getting to the bathroom, the kitchen and wherever else I needed to be. Soon I was back in my own bedroom, sleeping in my own bed. My girlfriend was there a lot – in fact, I think she might even have lived in the house for a while – and her presence was calming. She looked after me, and tried very hard to make me feel normal. Best of all, whenever I sank into depression, feeling sorry for myself, she talked me down.
Progress was slow, but every few days I’d reach what Dr. Babcock called a plateau – as if I was climbing a mountain, attempting to reach the pinnacle – i.e., who I was before this had happened. A plateau was a new height reached on the way up.
One morning I called my dad in. I could hear him getting ready for work in their room. He entered, stood by the side of my bed and smiled. I said ‘Watch this,’ and held up my left hand, which had been frozen in a claw since the early hospital days.
As he looked on, I dramatically opened my hand. All five fingers flexed fully open, shut again and re-opened.
This was a plateau.
Still, I lived with the fear of an unknown future. Every minor headache, every ache, pain or throb that passed through my body for the slightest second, was the onset of the next hemorrhage, I was sure of it. In my darkest moments, I knew I was going to have another one, and I wouldn’t survive it.
The question on everyone’s mind, especially mine, was how much of him will come back? I was fortunate that the hemorrhage had only affected the part of my brain that controls motor activity, which meant that my mental acuity (such as it was) was undamaged.
The residual damage was all on the left side of my body. My arm and leg seemed to be carrying extra weight – they swung like clubs, without any kind of fine-motor movement and without the coordination I desperately willed into them – and the now un-stuck fingers of my left hand shook with slight tremors. Sometimes they kicked like the legs of a walloped spider, in its spastic death throes on a hardwood floor.
I was a guitar player. It was all I knew. I wasn’t a great musician, but I never stopped learning and I knew that I possessed a pretty keen sense of how music was put together, how harmonies were structured, how changings keys, or the tuning on the guitar, gave you endless possibilities. Most of all, I loved it. I loved to play, and I loved to sing.
Making music was my talent. It was my passion. And at 19 years old, I had never thought of a future, any future at all, that did not involve my playing, singing and writing music.
Dr. Babcock assured me that, while he couldn’t say with 100 percent certainty that my left hand – my guitar-fretting hand – would fully recover, practicing certainly couldn’t hurt. After all, he said, the muscles in my fingers had atrophied, too. Should the dexterity return, another plateau, those muscles would need to be ready.
So I practiced, as soon as I could sit up and hold a guitar. As soon as my head stopped spinning. As soon as the double vision subsided enough that I only saw one instrument in my lap, not two.
It was hard. My fingers at first were like blocks of wood on a puppet hand, or inanimate fleshy things that did not receive the current of messages from my brain. They twitched. I still knew every chord, every lick, every bass run – as I said, the cognitive part of my brain was undamaged – but I could not make my fingers do as they were told. It didn’t help that my arm refused to gently glide my wrist and hand up and down the guitar neck; instead it moved in jerky movements, a few inches at a leap, never landing in exactly the same place twice no matter where I directed it.
Muscle memory means nothing without muscle control. It was frustrating beyond belief to pick up my instrument, go to play something I knew like the back of my hand, and have nothing but the discordant noise of buzzing, half-fretted strings come back to me.
I was left with an awkward, stumbling gait. I was left with peripheral vision that blurred and doubled every time I moved my head only slightly to the left or right. And the tightening in my stomach told me that music – at least the way I knew music – was not going to be an option any more.
For a while, I wore a black patch over my right eye. The idea was to make the left eye, the damaged one, work harder. In those first few months, the double vision was intense. I crashed into walls. I tripped over furniture. I fell down. My depth perception was all screwed up.
Over time, things improved. The patch was discontinued.
After three months at home, I was walking – slowly – with the help of a cane. I couldn’t turn my head quickly or risk dizziness and a possible fall.
Christmas came and went, and I was mobile enough to where my parents – in consultation with Dr. Babcock – agreed to let me go back to work. I dearly loved my job in a mall record store, and even though everybody I worked with had come to visit since I’d left the hospital, I still missed their company. I missed the camaraderie and the joking around and the endless, enthusiastic conversations about the music that consumed our lives.
Most of all, I missed feeling normal.
It was tough at first. I remember being behind the counter one afternoon when an old white-haired lady came up, buying something or other with a kid I imagined was her grandson. I spoke to her, then turned around to get a bag for her, using my cane as support. As I faced her again, the old lady said “You’re all crippled up, ain’t ya?”
That hurt. Forty years later, I can still see her, and hear her, as if it were yesterday.
Mom took me to see an expert in biorhythms, which was some sort of psychological craze in the late 1970s. Perhaps she’d read about it in Readers’ Digest. I didn’t know what it was all about – and today, after researching biorhythms, I still don’t.
The woman placed tiny sensors all around my head, attached with little adhesive pads, and talked to me. I was depressed, I told her, because everything in my life had been turned upside down. I’m sure I went into the whole spiel about no more guitar. My girlfriend, who’d been so great throughout the recovery period, had left me.
I went to the biorhythm center a couple of times. One day, the “therapist,” or whatever she was, told me she understood my depression – and then asked me if I’d ever spent Christmas alone, which she had done and would certainly be doing again, and that it filled her with unspeakable sadness … her eyes welled up with tears.
I did not go back.
Looking back, 40 years later, I realize that I’ve lived a lot longer with this thing – and I live with it every day – than I did without it. The dexterity in the fingers of my left hand never fully returned, so guitar playing – the only thing I was any good at – was reduced to something a bit less musical, a lot less fun, and way more frustrating than such a joyous exercise ought to be.
Still, I soldiered on, and still do, dreaming every so often that I’m Eric Clapton onstage at the Albert Hall, playing fluid lead lines with a killer band. Then I’ll wake up and remember that I have little to no fine motor coordination in those fingers. The weird thing is that my brain can still take a song apart – I can hear the chord progressions, the melody and the harmony, I know where my fingers need to go – but my body simply can’t translate it.
I guess I reached the final plateau when I was in my early 20s. Physical therapy stopped helping. From there, it was all about forging an entirely new life.
I’m 59 years old at this writing, and my equilibrium remains shaky. I have no balance, and can’t take more than a single step in a straight line before I wobble off the path. Sometimes, when I’m walking, I’ll involuntarily take a half step to the left or right, or half-spin in a different direction. I don’t have any control over it. I don’t know when it’s coming. Sometimes I’ll crash into a wall.
I still get the occasional tremor in the fingers of my left hand.
I have not run in 40 years. Not once. My left leg slams down hard, like a club, and I cannot find any body rhythm at all.
I have not jumped in 40 years. If I try a little hop, straight up in the air, my legs never meet the ground at the same time. I can’t even hop down from a box or a chair. It’s like my legs are in two different bodies.
Dancing? Not a chance. I’m Lurch from The Addams Family.
When I turn my head slightly, the double vision is still there. My depth perception is poor at best. One of the great sorrows of my life was while my beautiful son was growing up, obsessed with sports, and I was unable to throw or catch a baseball, or a football, with him. I couldn’t see it coming until it was a foot away from my face. After a dozen tries, you get to be fearful of the thing coming in, and you’re no good at all.
Of course I realize that I was lucky in one very significant way. So many people live their lives in pain, or some sort of agony, or extremely difficult adjustment, and I’m still alive, thinking and breathing and walking and talking. And I’ve had a pretty great life, all told. My son and daughter are healthy, bright and compassionate people, and I could not be more proud of them both.
Being 100 percent honest, however, not a day has passed that I haven’t thought about August 29, 1978, at least for a brief moment. Once I got over feeling sorry for myself – and, to be honest, that took a very, very long time – I started to examine the event in terms of how it affected me emotionally, and in terms of my relationships with family, friends and co-workers.
I was bitter. Man, was I bitter. What did I do to deserve a kick in the head?
A group of soldiers stands in formation. “I need a volunteer,” the captain says, “for a dangerous mission. You might not survive.”
Everyone in the line, except me, takes a step backward. I’m the involuntary volunteer.
The first thing that happens: You think everybody is looking at you, and they can tell that you’re not right (remember the old lady in the record shop?) So you develop a kind of armor, a protective mechanism that renders you impervious to criticism. Bite them before they bite you.
As a reaction to depression and denial – twin snakes eating each other’s tail – you develop a thick skin to disguise your thin skin.
Behind this is a deep, deep sense of self-consciousness. I have not felt like an entirely normal human being in 40 years, not since my “new mormal” was introduced. Despite my successes – I raised a family, had a pretty good career in journalism, wrote a couple of books and ultimately married my best friend – something way down in there has always told me I lost my essence at 19. That I am an impostor in Bill DeYoung’s skin.
Another defense mechanism that developed: Whenever I would drop something (which happened a lot) I would say “Of course.” This was a reference to the Murphy’s Law that I believed my life had become. Something broke – of course. I knocked something off a counter – of course. Couldn’t get a door, or a drawer, open – of course.
The truth, I’ve since deduced, is that I’m just clumsy. For a long time, I guess, it was easier to get pissed off at God, or whatever it was that threw this anvil at me.
It became my mantra, “of course,” so much so that those around me began to believe I was just reacting negatively to everything around me. For a long, long time, I found it very difficult to be happy.
The downside to this is a guilty feeling I’ve never been able to shake – that I gave less than I should have to those who’ve loved me over the years, because I simply couldn’t get over a life that no longer existed. None of this has been fair to them.
It’s been 40 years, and I’m still here. Love and gratitude are key for me these days. Even though I’m reminded constantly of the limitations of my body, I can say this now without crossing my fingers behind my back: I’m over it. You know, forgive but never forget. And enjoy another day.
Read Part 1 here