My neck was came darned near being broken in the car wreck. I have always struggled with neck pain: back in high school, I was trying to show off how extremely cutesy and agile I was, and I tried to do a back flip in our gym without a pad. I had never done one successfully before, even with a pad. The resulting damage left me in a soft brace for six months, which my mother tried to dress up by covering with attractive fabrics to coordinate with my, of course,deeply trendy outfits. Embarrassing epic fail.
Anyway, because of that old high school stupidity I have had degenerative arthritis in my neck for years. Then when I began playing piano for hours at a time a few years ago, it began hurting terribly, so my doctor ordered a course of physical therapy. During the PT, we found out that I needed bifocals, of all things, I was holding my head at such a weird angle trying to read the music and look at the students, back and forth, that that was triggering this latest episode.
So I didn’t start with the greatest neck history.
The impact of a heavy truck, hitting my little car, when he drove through what should have been a stop sign at over 70 miles per hour and hit the side of my car, was….very harmful. Let’s just say he made a very, very bad decision. But back to my neck. Never strong at the best of times, it was slammed back over my headrest so that most of my brain damage was to the back of my brain. My neck condition, was for months, critical. There was virtually no chance that, if I ever got the brace off, I could avoid an extremely invasive neck “fusion” surgery. I only vaguely understand this, but as I do comprehend it I would have lost a couple of inches of my neck, and much of the functions the neck performs beyond simply holding up your head and being a conduit for food. Turning your head, looking around, looking up and down…not so much, apparently.
And one of my vestibular problems, BPPV, was so drastic that I was simply throwing up anytime they would change my position. Move me. Try to sit me up. Turn me over. Roll me over. Instant spew. Again, thank God for the coma because I don’t remember any of this, but my family and the nurses certainly do. To all of you, I’m so sorry.
Then right when I began awakening from the coma, I was moved to On With Life. Enter Amy, the vestibular specialist. She watched my eyes, saw me doing all this spewing business and ventured a preliminary diagnosis of BPPV. But she couldn’t be sure, and she couldn’t treat it. The diagnosis AND the treatment both required some pretty fast movements involving my neck, which were clearly impossible with the neck brace on.
The neck brace came off just before I was released from On With Life in early January. Until that time, I had been taking motion sickness pills to dampen my vestibular symptoms and make them less noticeable. The week it came off, I was scheduled for a diagnosis and first treatment. They put these cool huge goggles on me, brought a trash can over, you know, just in case. Then you do a whole complicated series of movements, rolls, sitting up, laying down, and all the time people are watching your eyes on a screen to see the fine movements that the nystagmus causes. I asked Amy one time what exactly they were watching for, and she asked “Do you remember Cookie Monster’s eyes when he would see a cookie?” “Well, it’s a lot like that.” Interesting.
At first without the neck brace there was a LOT of neck pain. Because of all the trauma to my neck, and because it had been immobilized for months, my neck was simply unable to support my head. Its ligaments were basically noodles. By evening it would be aching really, really badly. I slept in my old neck brace for months.
All the time I had been in the brace, I had had to sleep flat on my back. My normal sleeping position was on my stomach. After the brace came off, I couldn’t lift my head high enough to get it on a normal pillow. We found the coolest travel pillow, very bendy, with the center cut out of it. I slept on that, flat on my back, for another year. Now I sleep on a low pillow on my side, but I still spend at least half the night on my back.
People were praying for my neck to heal: Thousands of people, through my Caring Bridge, were praying, and for this surgery to not be necessary.
Three months after the accident, I went for my first set of neck X-rays. It was guardedly optimistic. Much better than expected, certainly, but far too soon to tell if the weight of my skull would still drive my head down into my neck, making the surgery necessary. Come back on the one year anniversary.
We came back at one year. More X-Rays. The doctor came into the room. Very, very good. Almost less than one millimeter of my head settling down into my neck during the first year, which was the danger point before my ligaments were strong yet. Still too early to be absolutely sure, but if the two year anniversary was just as good, he said I would never need to come back again and NOT NEED THE SURGERY.
Two year appointment. No fear at all in my heart. In the last appointment I had asked him for neck strengthening isometric exercises he could show me, and I had been doing them regularly with no pain. I was turning my head so much farther, looking around me so much more normally. I felt total peace whatever he said. I knew God had it.
After I had the X-rays taken downstairs, we went up and waited a little for him to read them. Finally he called me back into his off. He started out, as my husband said he always did, with a history lesson. I could wait. I knew it was going to be all right. Then he got to the point. He said “There’s virtually no more settling of your head into your neck.” “You never have to come back and see me.” And then he kept looking at them, and looking at me. “It’s odd. The only explanation for why you avoided injuring your neck more, and didn’t need the surgery, was your coma. If it had been even a week shorter, I think we would be looking at a very different set of circumstances with your neck.”
Sometimes God says “Yes.” Sometimes He says “No.” Sometimes He says “Wait.”
My husband says that he still wishes when all those panicked prayers were going up to Him….because every single day and hour that you don’t wake up increases the likelihood THAT YOU NEVER WILL! He’s the Creator of the Universe. Would just a text message have been too much? Just an “I got this one” or something? And I gotta say, that’s a question we’ll ask when we get there. But not right away. We’ll be too busy thanking and praising Him for stuff. Amen.
I don’t know where to begin here. So…feet up? I prefer ending with the face.
Every time I take off my shoes, my attention is drawn to the fact that my right ankle and foot are slightly larger and more purple than the left. This is the side that the truck hit, and my injuries were most severe here. There’s still a lot of pain and tenderness in my right foot, ankle, shin, and knee. For a long time after I came home, this area was always extra cold. But, unfortunately, it also misinterpreted “heat” as “cold”, leading to some very near mishaps with bad burn situations. Close vigilance in the way of actually reaching down and touching my supposed “freezing” foot, only to find out it was burning hot, prevented some pretty bad situations.This is a little better now, but still continues to be a problem. I’m sure the reason I don’t notice it so much anymore is a combination of gradual improvement, I’ve gotten used to it, and I’ve found adaptations. Seems you can basically pretty much get used to anything, unless it’s constant disabling pain. Thank goodness I don’t have that anymore!
More about my temperature: a common result of brain injury is the body’s inability to control its own internal temperature. During the fall/winter/spring, or simply anytime I’m indoors, away from the sun and in air conditioning, I’m cold. Freezing cold. Sometimes it gets so bad that my body starts shaking uncontrollably and can’t stop. This is embarrassing for me, and bewildering for strangers. Fortunately it only happens infrequently, but still…
To counteract this I wear gloves simply all of the time, even indoors. Except in the heat of summer, I carry a blanket around to throw over my legs while I’m sitting. I always wear two pair of pants, and often three shirts. Big change for a girl who always called herself hotblooded and used to wear sandals in the depth of winter.
Next comes the scar from the feeding tube. This is what left me with my “second belly button.” The feeding tube completely saved my life the seven weeks I was in a coma. I had the feeding tube in until long after I learned to swallow again. The doctors had to determine me to be getting enough nutrition from food to not need it anymore. Getting it out was not fun. Let’s just leave it at that, shall we?
My entire midsection is a network of scars. I use lots of lotion to keep them soft, but even so some of them are raised and hard. Whenever I am tempted to call them ugly, my husband sweetly corrects me and tells me they are the most beautiful things in the world to him. Because of those scars, I am alive. I go along with him, but I secretly still think they are ugly.
Sometimes they itch madly. Occasionally, for no reason, my neck flushes bright red–a side effect of one of my medication. When this happens, the tracheostomy scar in the front of my neck seems to positively glow white in contrast to the crimson of my neck. I can feel the heat rising up from my neck, and it quickly transfers to my embarrassed cheeks. Is there a word for infinite embarrassment? That would possibly be me at these times. But such a trivial thing!
Sometimes I manage (after getting dressed in the morning) to forget about most of my scars for hours. Then I change my clothes, or take a bath,and am startled to see they are still there. My short term memory loss continually gives me the gift of forgetting–and rediscovering–over and over again.
For a few weeks, when I first came home, I flirted with the idea of trying to hide my tracheostomy scar with a scarf. After all, it’s not very pretty. Aren’t women supposed to be all about trying to look attractive, hide our flaws? Aren’t we taught to dress to minimize our imperfections, not flaunt them?
And then I started thinking about that scar, what it said about me, my life, my experience, what I had been through. Of all my scars from the wreck, it was by far the most visible. By trying to hide it with a scarf, wasn’t I saying “No, no, it wasn’t ME that was in that accident! You must have heard wrong! That was someone else entirely!” Wasn’t that sort of pretending that the most significant experience of my entire life was somehow shameful, incidental, something to be quickly forgotten and covered up and brushed aside?
I decided otherwise. It was hard for me. I’m pretty vain. I don’t ever try to purposefully flaunt that scar because I still find it very unattractive, but it is a key part of me and what I’ve come through. Just like my silver hair, and my lined face. I came by this silver hair and these lines honestly, and I wouldn’t trade a single day. So what was I saying about the scar by trying to hide that? After all, I survived what my scars represent. By not hiding them, especially the visible ones, I hope I’m sending the message to people who see them that they can survive too. Because, unfortunately, bad things are coming to us all. We have to stick together, scars and all.
It all began with music.Language was next, and because I grew up in America English was what we spoke. I always have had a knack for languages, but music definitely came first.
Because of this I never considered a life outside of music. I started formal piano lessons at age 4 because I was playing all of my older brother’s piano pieces note for note by ear. I majored in piano in college, and for several years was a staff accompanist at a respected university. It was as natural as breathing or talking, and I think anyone who knows me will agree that talking has always come very easily to me. It all was just so darned simple …I practiced and played for hours every day, but it was always pure joy and release from tension. I seemed to think in musical terms…I was constantly imagining musical phrases in my fingers. Add to this the fact that I had near-perfect pitch, and my life was filled with music. Fortunately I married a musician too, and our children were also musical, so life was rich and filled with flowers, art, books, laughter, and–most of all–music.
Then came the accident. Or as I prefer to say, “a truck hit me.” Everything stopped. The music stopped. My life came within moments of stopping. And it has been excruciatingly s–l–o–w in starting up again. Some days I am more successful than others at coming to grips with this new reality.
All my life has been some wonderful combination of teaching vocal music, leading worship, teaching piano, or simply participating in music. At church, school or home, I sang and was at the piano most of the time. After the accident all that came to a screeching halt. The part of my brain that processes the information coming in from my eyes and ears was badly damaged, so I could see and I could hear, but I couldn’t make much sense out of the signals I was receiving.
Besides this, I had major physical injuries to deal with as well as my damaged brain. The things that directly affected my singing were: my diaphragm was torn and had to be repaired surgically, several ribs were broken which still causes me pain when I try to draw deep breaths, I had a tracheostomy in my neck for weeks. There didn’t seem to be much hope that I would ever sing again.
At first, when we went to church, I couldn’t even match pitch, or sing more than two or three notes without having to take a breath. For several months, just getting there, and being there, was adventure enough for me.
I couldn’t make sense of the faces, the music, I was worried about things like where we would sit and having to get to the bathroom. My main emotion was paralyzing fear, but I was determined to get better. That’s pretty strong motivation for getting out and about again, and I knew I needed God, and church, more than ever before. So I made myself keep going.
After several months of listening I started trying to figure out the time signatures of the songs. I would try tapping along, and periodically ask a member of my family what I was thinking it was, and ask if that was correct. Sometimes it was, sometimes it wasn’t. Gradually I improved. Then I got somewhat more adventurous. I decided I would try to match a pitch.
I knew this would be quite an important endeavor for me. I remembered from my years of teaching that listening was vital to matching pitch, so I thought starting with humming would be best. One morning they were singing a piece I particularly loved, I so I finally got my courage up. I tried to breathe as deeply as I could, I hummed along for a few notes, but couldn’t hear myself at all so I decided to vocalize along with just a few notes.
Total train wreck. Not even close. My only consolation was that absolutely no one noticed, because my voice was so weak that it was practically inaudible. I was so shattered that I stood, blinking back tears, for the rest of the singing time.
That was another rough stretch. It was difficult to collect the broken pieces of my identity one more time and create another action plan. Hadn’t I done enough starting over?
I did a lot of thinking and self-reflection about my life, and realized that this had always been a core piece of my identity, something that I never wanted to lose. The idea of “music” is so much deeper to my identity than any nonsense about having a beautiful singing voice, or playing piano well. It is the lens through which I see the world It very much brings everything into focus for me. I knew that if I was going to find any joy in the remaining years of my life, it was absolutely essential for me to get music back. I just had to find a way to not let memories of what HAD been destroy my joy in what WOULD be. I resolutely pointed my face towards the future, and desperately tried not to glance back over my shoulder.
As a teacher I had always greatly enjoyed working with adolescent voices (there’s some speculation that may be because of my somewhat immature sense of humor) but that’s beside the point. Anyway, now I had to bring all those lesson home to myself. I was among the worst singers I had ever worked with, but I was also my favorite kind of student. A pretty quick study, very motivated, and there’s a big difference between learning for the first time, and remembering skills and theory that you’ve taught others all your life. All I had to do was think. Note names and their places on the staff, note durations, music theory, vocal pedagogy….all of that was in there. I just had to unlock it,
It all starts with breath, both in voice and in piano. Deep, rhythmic, relaxed breathing. How many times had I said that to my students? Breathe in tempo BEFORE you begin the music and then join in. It’s very much like children in a game of jump rope on the playground; if another child wants to jump into the game already in motion, you teach them to watch for a while, count along, then breathe in time and “join in with the rope.” Don’t over think it, just relax, breathe in tempo, and jump in.
I decided it would be most time-effective to combine practicing singing with practicing piano. So I formulated a plan for daily practice of both.
That Christmas my family bought me a stationary recumbent bike to strengthen my legs. When I finished my piano practice, I would climb on my stationery bike and start pedaling and singing. This, I reasoned, was not only strengthening my singing voice and breath support, but my memory. During that Christmas season I would sing every Christmas carol I knew, and all the verses. Especially Good King Wenceslaus. My oldest daughter and I, when she was in high school, challenged each other by memorizing ALL the verses to that carol. Every Christmas since we (somewhat teasingly) test each other on the words. That was one thing I was simply desperate to get back.
I had taught general music for years, so I knew lots of folk songs. Those all came in very handy during our child raising years as lullabies, and they came back into use now. Again, all the verses. I thought of it as “double” or “triple teaming” my therapies.
My singing voice now no one would describe as “beautiful.” Not anyone who didn’t know about the accident. But at least I can contribute to singing in church now, and I can pretty much make it through a complete phrase. That was a necessity for my inner musician. Now that’s all I ask. But I’m still working. Still pedaling away madly on my bike doing vocal warmups.
Now for piano. This was definitely the most painful blow. I was never an operatic vocal soloist, but I was a very serious pianist. The accident threatened to steal all that me. I forgot everything. Except that, once upon a time, I had been very good. Now I couldn’t see the notes…they didn’t stay still on the page. I couldn’t remember what they meant. My cerebellum was damaged, which greatly affects one’s coordination, so my fingers wouldn’t work right, and my hands wouldn’t work at all together.
My music therapist at OWL was wonderful. My family had told her how vital music had always been to me, so they all thought music would be a great way to reach me. So they started taking me in to sit in front of the piano, and putting my hands on the keyboard. I was wearing a heavy neck brace, so I couldn’t keep my head upright for very long. Multiple times a day my husband went through this pain. Then, one day, a miracle. My hands played a major chord. Then, a few seconds later, another one. Then slowly, back to the first one. Back and forth this went on, for quite a while. Then my hands fell to my lap, and my head fell forward. After the first chord, he had begun videoing, and when it was finished, he sent it to our children, They happened to be all together, on a rare afternoon off-duty, off for a walk. They watched in disbelief, and then hugged each other. They told me afterward that even though I still hadn’t spoken, or recognized anyone, they knew in that moment it would be all right. That I would be back. That I was still in there.
Fast forward several months: when I first came home, I was able to pick out single melodies again by ear, and could vaguely remember how to read music, but the notes still wouldn’t hold still at all, and I couldn’t tell the notes apart on the page. Fortunately my whole family reads music, so someone was always available to help me out. My cerebellum injury left me with very little sense of tempo, so I’m reliant upon a metronome. I had to start over with the simplest exercises, one hand at a time, then work up to scales. At first I tired extremely quickly, so I could only practice a few minutes a day.
When, eventually, it became clear to me that I would never hold a full-time job again, or possibly ever drive myself again, I sank into a deep, dark depression and thought “why practice? I’m never going to use it again!” Then, one day while (hopelessly) praying about it and the thought stole into my mind “you’re never going to be ready for ANYTHING if you don’t get your butt over onto the piano bench and start practicing!” After all, it took me years of practicing the first time when it was all so easy. Now it seemed it was going to be much more complex. Better not waste another minute. It seems as if I can’t even succeed at giving up. Believe me, I’ve given it quite a few tries.
As of writing this, I’m mid way through the Grade 4 Alfred books. I’m tempted always to compare it to how I was before, but I simply cannot do this. It’s just much more difficult for me this time around. I laugh that I’m not only like most “ordinary” piano students, I’m like the most challenged ones now. The ones that I always watched in wonder. The ones that I sometimes thought “How I wish I could just climb into their heads to see what it’s like!” Well, how I got my wish. Except it’s more than a visit. Now I live here.
Just about two weeks ago, we finally got a letter that I have been approved to receive a support mobility dog. It has been a very, very long process of prayer, hope, dreams, depression, and longing.
First I had to get a glimmer of a dream of a possible future for me. It seems impossible sometimes to avoid looking around at all I’ve lost, to see any kind of a future. When I let myself remember how very full my life was before, and how barren it seems now, it’s like looking at a wall. A dead end. I try to make myself picture a window that I can see through to look at what my life will become now. Perhaps one day I will be able to picture a door that I can walk through, into a new, lovely life. I won’t lie to you, it’s a tough process, and sometimes I’ve definitely been more successful than others. But God has been down here with me. and I’ve learned a lot about trusting and listening to Him. He’s very good at that…He’s had lots of practice.
I first had the vision maybe two years ago, not long after I came home from the facility. If I was going to struggle with walking independently for quite some time, and possibly forever, why not apply for one of these mobility dogs that I was reading about?
So that launched the first wave of effort. My oldest daughter, who had been home with us during the 9 months after my accident, took on the project. She did lots of computer research and made dozens of calls. It seemed most places we found wouldn’t allow their dogs to go out of state, only trained dogs for children and veterans, or were prohibitively expensive. She finally settled on a man here, in our city, who trained dogs He said he had several breeders he regularly used, and he would be willing to go with us to pick out the puppy. We would do the basic obedience training, and he would do the specialized part of the training.
I did further research on mobility dogs. Unlike other support dogs, they have to be fully mature…approximate two years old. Just the frame that they wear around their neck is pretty heavy, and in case the person stumbles and puts their full weight on the dog, their bone structure has to be mature enough to handle it.
And there is a very high risk that a puppy won’t turn out to have the correct temperament. After 18 months of training and love and waiting, we would definitely have a pet. But maybe not a mobility dog. Pretty scary stuff. But I said “Ok”, because this seemed the only option available. And a puppy is, after all, very very lovable!
And then came months of waiting, without a call back. When we eventually managed to make contact, it was only to find that this man had tragically died of an premature heart attack a few months before.
Of course this was a much, much more extreme tragedy for the man’s family than for us! Even so, it seemed like another setback on my journey to find a dog.
Back to the facility in St. Louis that my daughter had initially called, who had refused to give her an idea of any waiting period until we paid the application fee. As I pointed out, it had already been more than a year since we had initially started the process. The usual wait time we were finding for a dog was 2 to 3 years, so if we had applied at the time …..
My husband quickly agreed. He called them. The initial contact was indeed most unhelpful, which must have been what turned my daughter off. They were mostly concerned with telling you what the dogs could NOT do. They were NOT seeing eye dogs, they were NOT trained for PTSD, yadda yadda yadda. He persevered, thank goodness. She agreed to send him an application. Game on.
My lifelong best friend lives just a few miles away from this particular place, and she is the one who hand-delivered the initial application packet, and the follow-up packet. She and her husband also paid the application fee for us. They, along with several other friends, started doing some heavy duty praying.
Support Dogs Inc., where my dog is coming from, is, as I said previously, in the St. Louis area. I can’t say enough about the great work this organization does! We visited there a few weeks ago, and it just made my heart leap up to see those dogs, so proud and tall, all there for their “specialized” training. They are all born there, then at 8 weeks they go, either first to a family or to prison to live with a prisoner (they will eventually all do both) for their socialization and basic obedience training. Then when they are 18 months old, they come back for the specialized training. We saw 2 litters of puppies, and about a dozen of the older returning dogs. My dog is more than likely right now in a prison or a home.
Can you tell I am excited? This is me trying to hold it down. This application process has already been very extensive, and more than a year. They say the wait will be less than two more years, most probably around a year. I am content to wait now that I know for sure that somewhere out there there’s a dog for me.
Hello out there, my doggy pal! I’m praying for you, and your trainers.
This is hard to write. I didn’t even realize it was a problem.
It has been nearly 2 1/2 years since the accident, and I thought my attitude was mostly pretty positive. Actually pretty miraculous, considering everything, would be the consensus of most people who know me.
My husband gave me a lovely, lovely Valentine card. It was so beautiful it made my eyes tear up as I read it…he left it on the table for me when I came down for breakfast, because it was a work day for him. I was alone when I opened it. It said something about still being a beautiful woman. I mean physically beautiful. That shocked me to my core. I used to be pretty, or at least I thought so. I always had plenty of dates in high school and college, so that didn’t seem to be a problem, but every since the accident I look so much older, and initially I was so thin, and haggard and stooped, that I hated to see pictures of myself. And several people, several times, would ask me if my husband was my son, or if my friends–who were always in my age group–were my daughters. I was very well aware of how much the accident had aged me, and just didn’t enjoy looking at myself in mirrors anymore.
So I didn’t. Without realizing it, for a couple of years I had only looked at bits and pieces of myself in mirrors to check for gunk in my eyes, if my hair needed combing, or if my outfit looked all right. I had ceased to care much about my appearance. I was telling myself “It doesn’t matter! It only matters what’s inside you!” I had no concept of myself as even attractive anymore.
Then the card. I sat staring at it, thinking, for a long time. Then I slowly carried it into the downstairs bathroom, where I go to comb my hair, and set the card down on the counter beside the sink. I lifted my eyes up to look at my face in the mirror. Couldn’t do it. No matter how hard I tried–and I tried over and over for 20 minutes–I couldn’t look at my entire face. Could not make myself. I could only force myself to glance at bits of my face for a second before my gaze would slip away, no matter how I tried. I started to sob ,hard. I hadn’t realized this was even a problem, let alone such a desperate one.
It was totally shocking. Just another piece of crap I would have to fight through. I get so tired of fighting all the time. Of being positive. Of smiling. But I can’t give up, because I just don’t know how. One time, years ago, within a few months I had been let go from one job that I really loved for reasons that I’m still confused about, and then I got a temporary teaching job. When I interviewed for the permanent teaching job, I didn’t get it. Under, shall we say, pretty dirty circumstances, Those two experiences made me decide to be a more tough-skinned, less vulnerable, not smiling at everyone I meet, sort of person for the rest of my life! I managed to keep that resolution for….I’d say, about 1/2 hour? It’s not like I’m naturally good, I just don’t know how to be negative. I always choose the positive.
My hair is silver. It’s been naturally silver for several years now. Before the accident, my face was pretty tan and my movements were quick and youthful, so people hardly ever mistook my age, but now…I look worried all the time, I’m stopped over, I have to be helped everywhere, I’m a little thinner than I used to be, I have several scars that I didn’t used to have, and my eyes must look older. I move much more slowly, awkwardly, cautiously. No wonder they mistake me for the elderly mother.
I don’t feel I look beautiful anymore. I don’t feel even remotely pretty anymore. So how can I enjoy looking at myself in a mirror? How do I fix this? It’s no use that my friends and husband rush in and say “you look younger!” when, almost immediately, a clerk, or another stranger, will mistake me for the elderly mother. So I know better. I know they’re just lying to save my feelings, because they love me. Or maybe my husband still sees me through the eyes of love. I don’t know. I just know my eternal fountain of creativity is baffled this time. I always thought that my husband and I would grow old together. Not that I would suddenly leapfrog ahead of him. That people would mistake me for my own children’s grandmother. I KNOW it’s just my stupid pride, that I could have a terrible facial disfigurement or something like that. But it’s still a problem. Just because it could be worse doesn’t change the fact that it’s still a problem, and you still have to deal with it. It just helps you keep it in the proper perspective, I guess.
All through the physical therapy, I was so thrilled to be standing, then out of a wheelchair and walking again, it was unbelievable. Throughout outpatient therapy I would get on a treadmill and walk as quickly as I could for 10, and then 15 minutes. But I always had to have a belt on and a therapist standing beside me holding on, or I might fall down. Everything I was doing involved a gait belt and careful supervision. I had two remaining vestibular problems (I didn’t know what those were at first…let’s just say they have to do with the inner ear and they can mess you up pretty badly!) Daily exercises keeps one mostly at bay, but there is some permanent loss with the other one.The vestibular damage causes dizziness and vertigo, sometimes worse. Very like being in a mild, constant personal earthquake, with occasional violent upsets that send my stomach into a frenzy and make me feel as if I am falling. It can be sort of unsettling.
Couple that with the fact that most of my brain damage was to the back of my brain, the cerebellum, ,which controls coordination and balance, and I’m pretty much a mess when I walk. I can walk short distances by myself, but I’m very conscious that I have my feet wide apart so that I don’t fall down, and I walk with an oddly hurried gait once I get started. Very much of an out-of-control toddler sort of an affair.
I’ve been trying to think how to describe how this feels inside my head to people for about a year. Yesterday I got the most wonderful insight. See if you can picture this: It’s almost as if my entire head and torso were a peach, and my legs were toothpicks stuck inside the peach. My brain, which is supposed to be running this entire shebang, is like an offsite remote control run by another person. It doesn’t respond instantly, and every time the person running it has to get comfortable again with exactly how the controller works.
For instance–every morning I slide out of bed slowly. I get my weight situated evenly on both my legs, test if they’ll hold, and then stabilize myself against the side of the bed for a couple of seconds. This is when I start “turning on my brain,” Once it’s firing on all cylinders, I tell my legs to “walk”, and after a second or two delay, they usually obey me. All this breaks down under extremely frigid temperatures. When my legs get too cold, they just refuse to obey me. My brain says “walk”, but they won’t. My brain start raising its internal voice, but they won’t listen, I sometimes get so desperate that I start yelling at them out loud, but they still won’t move. I have to physically pick them up and lift them in the car, or wherever we are to get them out of the way. It’s like they don’t even belong to me.
Back to the fascinating peach on toothpicks picture: this is what walking feels like all the time. Very out of balance, very out of control. Always like I’m about to fall down. I have to constantly make myself lower my arms because they have a tendency to always be out in front of me, out of my constant fear of falling. I need to remind myself all the time to relax, because I am usually somewhat stiff and knotted from fear; I can’t see spatially very well, which causes confusion about exactly where curbs, or stairs, or things in front of me are located; quite an adventure!!!
Added to that , the delay in brain communication adds a delicious dollop to the entire thing. For instance, I really haven’t yet figured out the left-right thing which adds some extra confusion to me trying to direct my movements. The order of operations goes something like this:
Me, feeling thirsty, decide I want a drink. I make a decision to go into the kitchen. The operation begins.
2. Get glass from counter. Tell self to turn head and body towards refrigerator. Start walking. Stop when I reach refrigerator drink dispenser. Push glass toward first ice dispenser, then water dispenser. I squint to see more clearly if the water is actually going into the glass, and then how full it is getting. I’m much improved at this.
3. Full enough. Tell self to lift glass to lips. Concentrate on swallowing. This still requires a lot of work. I need to focus or or disaster will quickly follow. Success! Tell self to walk back to counter and set water glass down, and then you can go back to the couch. Sometimes I have to hold onto the counter a few seconds before I start walking again. If there’s anything in my path, this is a big issue. I can’t easily bend over because of bouts of vertigo. Back to the couch, my thirst satisfied. I turn around, put my rear end toward the couch seat, and let go a little. Always relieved when the seat catches me. I’m terrified in case a chair isn’t behind me, or it breaks, or something dire happens. I don’t know what I would do. Fortunately it never has. All this exactly like someone running the entire operation via a remote control. You have to figure out EVERY SINGLE OPERATION separately! That’s exactly how it is with me now. I don’t do anything automatically. At least now I can just go and get a drink and sort of play it by ear on the way…a few months ago I still had to plan the whole operation before I even started. Something as simple as getting a drink. Unbelievable. I still can’t believe it myself. I feel as if I’m being overdramatic just writing this!!
I was always quick and impulsive. Sometimes I would act first, think later. Too often this got me in trouble. It is impossible now. Nothing is at all quick, thus I cannot be impulsive. I have impulses all the time now, but I simply can’t act on them. So I wait. I wait. And I wait some more. I know everyone says they aren’t good at waiting, but I think everyone who knows me would agree that I was always much worse than most. God is definitely using this to teach me a very valuable lesson…and I still mostly hate it. But I love the image I came up with yesterday, of a peach perched on two toothpicks, being run by a remote control. I think that’s a perfect picture. And I know God is perfect, darn it all. And I really am learning, God. I guess. But I’m still not happy about it.