I faithfully sit at the piano several times a week, reach up, turn on the metronome, and dig in. It started out in complete frustration. My inability to remember anything, make sense of everything, when I knew vaguely that it had all, at one time, been the source of so much joy and meaning, both for me and for everyone that came in contact with me, was just crushing. And then, bit by bit, it started coming back. I could see that my diligence not only made me happy, but it brought my family joy. It seemed everyone that had ever known me before asked “how’s the practicing coming?” and just lit up when I told them how I was progressing.
But the last few weeks it’s been harder and harder, and today was horrible. Seems my coordination is slowly and steadily coming back, at least keeping up with the beginning level classical pieces I’m starting to be able to play again.
The giant problem is my dyslexia. I just can’t read music at all. Notes seem to be playing practical tricks on me now. It’s like my brain is an oversized junior high boy, with a not-very sophisticated sense of humor. “Your leg is cold.” “No, it’s not.” “Yes, it is. (snicker, snicker).”
And with music notes…”That’s an F.” Next time “That’s an A.” I can never be sure if it’s my dumb brain trying to fool me, or if it’s actually telling me the truth.
I don’t know if, or when, this will change. No one knows. I’m on my own here. So I have to, one more time, come up with a Plan Q. A different way of existing in the world where piano may, or may not, ever be my “thing.” But as Scarlett O’Hara said in Gone With the Wind, that terribly flawed depiction of the strength of the human spirit, “Tomorrow is another day.” So I won’t think about it today.
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.
The Chair From The Depths Of Hades.
It is called the Rotational Chair Test. Here is the online definition:
The chair test measures dizziness while the subject is being turned slowly in a motorized chair
The rotary chair test is used to help determine if your symptoms are due to a disorder of your inner ear or a disorder of the brain. Eye movements are recorded with small electrodes similar to those used during the ENG test. Not all individuals need a rotary chair test to assist with diagnosis and many health care facilities do not have access to a computerized rotary chair. The rotary chair test allows measurement of responses to movements of the head that are closer to speeds encountered in daily activities. During this test, the patient sits in a computerized chair that moves. The rotary chair test is very useful in determining if an individual has a problem with both sides of the vestibular system (bilateral vestibular loss.
I feel my overwrought hysteria about this test perhaps needs a bit more explanation. Allow me…
First: Pre-accident my vision was so exceedingly poor that I was totally dependent on my glasses. Almost any physical punishment was preferable to my glasses being broken. I couldn’t even find my glasses without them on my face.I was very near the “legally blind” parameters. Because of the goggles they have you wear for the test, you can’t wear glasses. I am lost without my glasses. Totally vulnerable and afraid to move. Childishly near tears immediately. My husband had to help me to step up into the “dark room”, which was a very menacing chair placed on a platform (I know my husband will say it was “just a chair” but I’m sticking with my story) inside a totally closed capsule. God help anyone with the slightest hint of claustrophobia, because there were no warnings of that at anytime before the testing.
I now see double without my glasses because of the brain trauma. Did I mention that the test was SANS GLASSES? Oh yeah, I think I did.
Second: The accident left me with PTSD. I was on anti-anxiety drugs, anti-depression medication, sleeping medications. For this test to be successful, they had stipulated that I was to be drug free for 48 hours before the test. So, basically, I hadn’t slept AT ALL for 2 nights except for brief naps from total exhaustion. And just wait until you hear what comes next.
Third: The test was scheduled for Tuesday. That Saturday morning, our much- beloved family dog, a yellow labrador retriever named Remo, who was over 12 years old, finally was unable to get up off his fleece in the kitchen. My husband and our son carried him into the yard and helped him stand so he could go to the bathroom, and then carried him back up on our deck and laid him on a blanket. The entire rest of the weekend he kept slipping in and out of consciousness. It was unspeakably difficult to watch. Monday morning my husband called the vet and they made an appointment for a couple of hours later. Remo had been our family dog with all that entails. The laughter, faithfulness, joy, stories, parties, camping trips, kayaking, singing along with my voice lessons The morning he was being put to sleep was the first morning I was scheduled to be off of all my medications. We had waited months for this appointment, my husband had scheduled the entire day off already. We needed some answers. We were going. Come hell or high water, and this was pretty darned close.
Back to the capsule. I hear the woman’s voice coming through a speaker somewhere in the darkness. I try to concentrate on the directions, but I am so extremely afraid I am having real trouble keeping it together. I am determined not to break down after we’ve come through all this. I’m finally here! I finally am just praying one word with tears running down my face. Please. Please. Please.
Fourth: Immediately after the accident I lost all concept of right or left. The first part of the test was showing a tiny red laser light on the wall, which of course I couldn’t see at all, and I was supposed to tell if it was moving right or left. The woman was given NO IDEA at all of what my medical history had been, she was just to administer the test. My husband was out there trying to explain, and I was inside having a total meltdown. Finally he opened the capsule, put my anxiety stone in my right hand, closed my fist over it, and had me repeat after him “right. Right. Rock right.” Finally I had it. He closed the door again. Back to the dreadful, terrible, awful, stifling darkness.
And somehow we held it together. I wasn’t alone in that dreadful place. Someone was there with me. Jesus was with me in my childish fear and isolation.
We had been waiting in this particular doctor’s office for several hours. First one waiting room, then an interview with an assistant, then another waiting room, and so on and so on. Now it was hours later, both of us were starving and I was scared out of my wits and my husband was worried to death for me, and the doctor had just rushed into the r00m, asked if we had had this particular test yet. When we replied “No,” he had sent us down to this lab. The sheet from the morning had said “don’t eat the morning of the test.” Luckily I had eaten a granola bar because now it was after 2:00 with no end in sight.
There were several tests. The chair kept stopping, turning, the voice kept issuing directions that I would desperately try to follow. My husband said it was maybe 30 minutes. It seemed to me like an eternity of pain and chaos. Tears kept streaming down my cheeks. The lady kept asking if I needed to stop, and sometimes I would for a bit. Sometimes my husband would open the door for a while and reach in and hold my hand for a while. They were both so unbelievably kind and gentle. The lady was simply appalled that they had sent me down without giving her any warning at all about my situation. I was just so grateful for the knowledge that both of them were keeping watch out there.
By the end I was just a broken, sobbing wreck. Praying for Jesus to please hold me. Which He clearly was. The lady’s sweet voice would ask me a question, I would breathe and ask Jesus to help me, and He would whisper peace to me. We got through it.
Then back to the doctor’s office to await the results of the test. Which was definitely the worst thing ever. Ever. Ever. We had been sustaining ourselves throughout this entire ordeal with the hope of finally getting some answers if only I could just hold on and make it through the test. And finally I had DONE IT!!!! Triumph!!!
Back to that last blasted office. He rushed in again followed by an assistant or two, And delivered this verdict. That he wasn’t sure why On With Life had recommended he see me. That he could only find a small amount of residual vestibule damage. What he had found (not him, of course. One of his assistants.) was significant cerebellum damage which accounted for my balance issues. He seemed surprised that none of my doctors had figured out that the cerebellum damage was responsible for my balance problems. He seemed to think that, because he could find very little evidence of vestibular damage now, that must never have been my problem.
When I inquired about exercises for the remaining vestibular problems, and the cerebellum damage, he stated that he wasn’t aware of any. When I asked again, trying to pursue possible places that did physical therapy, or exercises for balance that I could do at home, he just shrugged and would not, or did not, comment. The unspoken message in the room was that I would never get better than I was. It obviously wasn’t his issue. He was in the business of diagnosing problems, not solutions. “Hope” was not his MO. We’ve run into several doctors like him, and I have come to despise this philosophy. Medical doctors by no means are required to be experts in rehabilitation but they DO NEED TO BELIEVE IT IS POSSIBLE and be willing to point their patients in those directions We’ve run into these situations over and over and over again. You would think when they see and hear my story, they would change their tune, but apparently not. Apparently not.
That trip was a major setback. I was sick from the test itself, sick from losing our loved pet, sick from being off my meds for so long, severely depressed. I lay on the couch for days. Finally our daughter, who was back in New York, got so worried that she called the vestibular specialist at On With Life. Amy called me back.
She announced what we had heard from that doctor, about my vestibular problems being almost nonexistent now, was great news. I said “How is it great news?!” She said, “It means that our initial treatment worked really well, and also that you have been doing a great job at home with your therapy! This is really great intel! Now we know that your problem must be combination of anxiety and cerebellum damage, and there are definitely exercises we can do for that!” The way she said ‘WE” suddenly filled me with hope. Along with the “get on with it” tone in her voice. I sat up on the couch, and asked what the first step was. She explained, and my doctor certified me for another 3 months of out patient therapy at On With Life. We got me back seeing a therapist weekly for my anxiety. I had mourned, and rested, long enough. Time to get back work.
Back on track. Back moving forward. Back getting On With Life. They have a magical way of seeing a diagnosis not as a stopping place, but as just ruling something out, so that you can start exploring other possibilities. When the doctor told us he found very little sign of any vestibular damage, Amy knew how severe mine had been. I had been throwing up constantly every time they moved my head, until Amy had diagnosed it. I HAD been doing my exercises multiple times a day! Amy heard success where I had only heard echoing disappointment.
I understand this test is the gold standard of vestibular tests. We’re definitely fortunate to have a facility in our state that has this test available. I don’t mean to frighten people away at all. I know that my circumstances were, hopefully, very, very unique. I’m just being brutally honest about my perception of this test and its echoing repercussions. People have this test all the time. I’m sure the sweet lady was as traumatized as I was. They should have given her at least some warning. There’s a an extremely large chasm between me and someone who is experiencing bouts of puzzling dizziness, which was everyone else we seemed to be seeing in the waiting rooms. The majority of them had driven themselves, or at least were walking by themselves.
Thank goodness the doctor decided not to do the water test, whatever THAT was. Apparently my results weren’t bad enough for that….we’ve often debated what that would be. I sometimes wonder if it is in anyway connected with how they used to test for witches. I am just am certain I don’t want to find out, so please don’t tell me if you do know.
Talking. Like Anne of Green Gables, I have been told too many times, too roughly, that I talk too much. And I know I do. I am a verbal processor to the extreme. I hear, or think, or read the barest germ of a thought, and immediately have to talk it through WITH SOMEONE ELSE to start bringing it to life. My husband is the total opposite. He can dream something up, and plan every nuanced detail before he springs it on the world in all its glorious fruition. Not me.
I have to exhaustively find person after person to talk phase one, phase two, phase three, phase forty, phase one hundred,, of a plan that might not ever happen. My husband used to marvel at how I could expose myself like this. But I simply had no choice: it was the only way I could ever achieve anything.
My mind was always bubbling, always excited, always full of ideas. And between children, church, and school, I had the perfect places to release all that energy. It was a lovely laboratory of ideas and excitement building on ideas and excitement. But the last few years it had reached a crisis point of stress, and I knew something had to give. So I was enrolling in a Masters of Music Education to get a job at a university as a mentor to student teachers, which increasingly had become my passion.
And then…the accident.
Now I have been totally off Zoloft, my anti depressant, for several months. I have been off my anti anxiety medication for a long time because that drug, along with a couple of my other medications, set off a terrible drug interaction which caused such severe dizziness it left me almost unable to walk or move. So..
I’m feeling excitement again, my brain is sparking all the time, I’m excited about ideas. Because I have dyslexia now, I can’t read books, but I can listen to podcasts and listen to audio books, and I can think about them. And I love it. And, along with that, I feel sadness. And it’s my sadness. And I love that too . I don’t want to lose that again.
But I’m deeply, terribly, afraid I might have to. Right now I don’t have a neurologist, but my doctor has requested an appointment with one that I liked the sound of. I really loved the previous one, but after only two visits, we received a letter saying he was joining a non-neurological practice and, in more polite terms, his patients would just have to fend for themselves. So since them I haven’t had a neurologist.
I have almost nightly meltdowns now. This is due to a lot of things, but a whole huge chunk of it is my desperate need to talk with people who I know, and who LIKE me! I so miss that! Writing is just not the same. It’s not collaborative, not a team effort. And talking is so hard now. I get so confused, story lines are difficult, time lines are impossible, my speech is still slurred when I get excited. I dread talking on the phone still, , and I almost hate meeting new people and having to talk to them.
When my husband is home, he’s always working on something out in the yard where I can’t follow, or it involves equipment which makes sudden very loud noises. Anyway, he carries such a huge load of guilt and worry about me all the time. He really only seems to truly come alive when he’s working out in the yard or remodeling our house. He hates to sit and talk. I used to dislike it, too. But that was before the accident. when I could walk and talk at the same time.
Friends have to come to me now. We live in a pretty isolated area. Everyone who used to come to our house would always exclaim “What lovely privacy!” And that’s exactly how it is. Very private. How lovely…..except now, when I really kind of need more neighbors.
Maybe the doctor, on hearing this, will put me back on the Zoloft, Maybe that’s for the best. If I have no one to run all these exciting ideas by verbally, maybe it’s best if I just never think them. Maybe. Because this really is a kind of torture. I keep telling myself to put on my big girl panties. Stop being a whiner. No one is mean to me at all. So what if no one wants to hear my exciting ideas about _________ just this minute? Is that really the end of the world? And then I scream (silently, of course) yeah, to me, it kind of is. It kind of is.
Ooof. I wrote this whole thing last night in a total orgy of self pity, and then I went upstairs trying to flee from the whole world downstairs. I put on the television to public television and there was a documentary about the history of some genres of folk music. The particular segment that I settled on was set in West Virginia, and was narrated by a couple of men whose fathers had spent their entire adult lives working down in the coal mines. I watched those terrible scenes before me, and immediately felt bathed in shame.
I thought I would just erase this whole thing today. But then I decided not. I am not who I used to be. I am not nearly as clever or able to process things mentally well at all. I get confused frequently, and I get angry. That slows my thinking down to a virtual crawl. This frustrates me EXTREMELY. I am in some ways, vastly more selfish now. But in other ways, I know and recognize suffering as I never did before. I know I am in no way experiencing the limits of human suffering, or even anything close, but at least now I can maybe catch a dim glimpse of desperation? Maybe? I have no idea. I just know I couldn’t erase what I wrote last night, but I had to write an addendum. Please forgive me for whining.
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.