Body Grief, Part 2: Spinal Cord Injury

When I was born, I was born with a narrow spinal canal, which I wouldn't know about until middle school when something happened that bruised my spinal cord. My fingers itch to tell you that it's not a big deal. I'm totally fine and it could have been so much worse. I could have been paralyzed or something. It's a non-thing. 

But, my grief has something to say about it. She's actually got a lot to say.

I was born with a narrow spinal canal. Because of that, I bruised my spinal cord at the age of 13 by dancing hard or maybe it was when I fell that one time. I'm not sure, but it happened when most kids are working on perfecting daring jumps and pool dives. Instead of talking about puberty and figuring out what it means to be a woman, I was in and out of doctor's offices for two years to have them tell me that my numb fingers and tingling body was maybe growing pains, or in my head. Maybe it was Lyme's disease. Maybe it was something wrong with my brain. Let's take another MRI of your brain to be sure... I would stump the doctors who repeatedly said that they never saw anything like this in someone as young as me. When they finally took an MRI of my neck, they realized that I was suffering from a spinal cord injury.

"Someone your age shouldn't...." is not a phrase you want to hear.

In the pivotal moment of learning about my body and its changes, I learned that I couldn't trust my body and that changes were bad. I learned that my youth had not saved me. I learned not about my mortality, but about my frailty, at 13 years old. Weirdly, that seemed worse.

I learned at 15, before my first surgery (after they finally figured out what was wrong with me), that I was a "walking time bomb" and that if I had so much as a whiplash, I could easily be paralyzed from the neck down. After that information was shared, they scheduled my surgery for a few weeks later.

What was wrong with me? I was born with a narrow spinal canal (congenital spinal stenosis), and had bruised my spinal cord, which I only recently made the realization is categorized as a "spinal cord injury." The doctors always talked about my spinal cord as being bruised, but I think that was their way of making it feel less scary to me. Note to self (and any of you): call the condition what it is, because it helps in the future. It is a spinal cord injury to my C4-5 area, and my symptoms are consistent with that term.

My first spinal surgery was a brutal one. Military surgeons are not the best of the best, and that actually does make a difference when you're getting spinal surgery.

I remember going in to the pre-op room, along with others in their hospital beds, we were lined up and waiting our turn with the anesthesiologist. As a 15 year old, I had never broken a bone or been to the ER; hospitals and surgeries were new to me. I was worried, how could I be sure that I wouldn't feel anything? The man next to me was waiting his turn to go in for knee surgery. He was a giant man, with a hearty smile and comforting words for me. I don't remember what he said, but I do remember watching him fall quickly and deeply to sleep within seconds of the anesthesiologist walking to his side. I thought, well, if they can put that guy out that quickly, I should be good. And I don't remember anything after that until I woke up post-surgery. 

The surgeon did a laminectomy of C3-C6, which means the back of my neck was rendered boneless for three notches, my long neck like a stack of horse-shoes, with no other support but my neck muscles (which had all been cut through).

After my first surgery, I was homeschooled during recovery with the help of a public school aid who visited once every week or two. I did work from my couch, although I don't remember it being that much. I remember that I failed a test that was given right before my surgery, which alerted me to how nervous I was (I was a very good student). My "homebound" teacher told me not to worry about it, and the test disappeared off my record.

I came up with clever ways to maintain some independence. I used a compact mirror to see around me since I couldn't turn my head. I had a whole station at my side of all that I needed: the remote, a drink with a straw, my mirror, and some books. My Mom was always there if I needed anything. My older sister was a little annoyed that I wasn't required to help clean up. She had no understanding of what spinal surgery entailed or what the recovery was like. All she knew was that I was lying on my butt, asking for things and getting them. 

I remember the day my mother helped me take my first post-surgical bath. We took my soft neck brace off to clean my imprisoned neck, and when my mother wet my hair to help me wash it, the mere weight of my hair pushing down on my neck caused me to cry in pain. We had no idea hair weighed so much, or that my neck was so weak.

There was no physical therapy. No follow up, except the surgeon (who was kind) who told me he could see my spinal cord breathe when he removed the bones from the back of my tight spinal column. The surgery was not a corrective surgery, the spinal cord damage had already been done. This surgery was to prevent future injury or risk of paralysis. The surgeon mentioned in passing that I might get a thing called "swan's neck" when I was old and grey. I, with my "I'm fine" attitude, said "who cares if my neck bends when I'm 80; I won't care what I look like."

No one corrected my understanding of what "swan's neck" was.

When describing my symptoms, which usually followed a curious friend's question about my scar on the back of my neck (very Frankenstein-esque), I would try to tell my story as succinctly as possible. There was no elevator pitch story about my neck, and I grew tired of telling it and trying to make sense and be accurate. I used to tell people my symptoms were like wearing a thin glove over my hands at all times. I stopped telling people about any of it because it was so hard to explain, and took too long. I could tell people lost interest pretty quickly, and I was basically over it myself.

Besides, it wasn't a big deal. It was in the past.

Five years later, I was 20 and in college. I'd fully recovered from surgery, but the numbness from my bruised spinal cord had become my new normal. I couldn't put earrings on unless I could see them clearly in the mirror because my fingers couldn't feel the tiny backings. It was a lot of work, so I decided that I would only wear the earrings that hook on. Eventually I gave up even on that and decided not to wear earrings at all. My ear piercings have closed up. Any jewelry with tiny clasps are out. Playing the guitar is not a real possibility. Anything that requires dexterity is off the books for me. 

By 20 years old, I had given up tiny things, lots of little tiny things.

Then, I started to feel even more numb, my pinky fingers became like extra appendages that I had no control over. I was more tingly. My typing was slower, because my hands weren't responding as well, they were more clumsy. I struggled to tie my shoes because my hands just wouldn't work efficiently. I struggled to walk with my normal stride because something wasn't quite right. My brain felt like it was not in clear communication with my body and it was weird and frightening. But I ignored it. 

My sister, who was with me at the same college and saw me struggle, ratted me out to our mother. I said that it was nothing. It was so subtle and slow that I couldn't even tell you what was different. I'd completely forgotten what normal felt like. I knew it was getting worse, but I was afraid of what that meant.

With the new symptoms, my surgery wasn't in the past anymore.

I found myself in the office of yet another neurosurgeon. It was in this office that I started to understand just how bad my first surgery was, and just how complex my problems really were. Every 20 year old wants to hear: "Wow, you're young to have this problem. Your last surgery was a hack job. You need another surgery." I thought, "this is a bigger deal than I thought it was." I hoped that whatever this surgeon did would officially close the chapter on my neck problems.

This happened the summer between my sophomore and junior year of college, when I was trying to figure out what I wanted to do with my life, what dreams I wanted to follow. With my whole life ahead of me, I got this reminder: You are not strong and young, you are fragile. You thought that surgery was a one-and-done, but you were wrong. You can't hide from your body, it will fight you and fail you again and again. You are not like the rest of your friends. You were already different, and now you're even more different. 

You are fragile, so so fragile. 

This surgeon was one of those fancy south Florida surgeons that makes the medical journals. The surgeon got to do something new and fancy, just for me: a medical anomaly. With my hearing, I had my sister to commiserate with. With this, I don't even know where I would look for someone with. common experience. 

I remember medical residents coming in to see the doctor demonstrate my over-active reflexes. I was a teaching moment, a fun weird thing for them to see. I gave permission, but I wondered why my reflexes di that. No one ever told me.

I had my second spinal surgery fairly soon after my appointment with the fancy surgeon. The reason I needed the surgery, the reason my symptoms were increasing, was because my neck was bending; that swan's neck thing was happening way before I was 80. The missing bones in my neck were the culprit. My neck muscles couldn't do all the work of holding my head up without the literal "back bones" of my cervical spine. So slowly my neck had been slouching, bending, sighing down under the weight of my head (I promise my head is a normal size). My spinal cord was squished against bones that were straining to hold my neck straight like a superhero under a giant rock, saving my spinal cord from doom. The bones needed help. 

For folks who need a visual, put your hand out, palm up and flat. Imagine a pencil (or get one) lying straight on that hand: eraser at your middle finger, lead tip at your wrist. Now start to curl your hand up, like a cup or how you'd hold a little trinket in your hand. Imagine that pencil isn't supposed to move (and also doesn't). The parts of your hand that curve are pushing on to the pencil, especially at the top and bottom. Your hand is my neck (lying down) and the pencil is my spinal cord (getting squished).

What I needed was a little straightening out and extra support. The surgeon went in through the front of my neck this time, which would significantly decrease the post-surgical pain, compared to what I had experienced from the last surgery which cut through all the muscles in the back of my neck. This new surgeon straighten my neck by fusing the existing bones to a straight cadaver bone (no idea where it came from) with fancy flexible screws he invented, straightening out my C-3-C-6. My cervical horseshoes were now welded together in a straight stack.

I remember in the recovery room right after my surgery, I was given a phone. They told me it was my Dad, so I said "Hi, Dad!" I heard my Dad say "Hi" back, but his voice was squeaky and strained. I'm not sure I have ever seen my Dad cry, but I have heard emotion in his voice, and this was the first time I heard it so clearly. It hit me then that perhaps I should have been more worried going in to this thing. If my Dad had been scared, it was a big deal. 

I treated my surgeries as "this thing to get over." I didn't really process what I was feeling, I worked hard not to feel anything, to skip to the end, to recovery.

The first day in the hospital I was visited by both the occupational and physical therapists. I was severely nauseated by the mixture of powerful pain medication and limited food. It was a vicious cycle, not feeling like eating because I was nauseous, and being nauseous because I hadn't eaten. When the OT came in and wheeled me to their therapy room while I had a wet rag to my head, I may or may not have told them their vocation was a huge waste of time. They wanted me to use tweezers to pick up beads and put them in a cup. I told them I couldn't do this task before the surgery and had no interest in spending time doing it now. Then I threw up, so they took me back to my room. The PT was a little more helpful, she taught me how to get out of bed without putting too much strain on my neck, a method I still use out of habit today. 

I also received a phone call to my hospital room from the insurance department telling me my surgery had been refused coverage by my insurance company. Luckily I was still under my parent's insurance and did not have to bear the burden of that news, only the confusion and frustration of them calling me mere hours post-surgery to tell me that. (Long story short, the insurance did cover it.)

I was discharged and rode in the back of my Mom's minivan home for the two hour drive from Miami to my parent's home in south Florida. I laid flat in the middle seat, with my Mom supporting my head and my older sister driving. Every bump was agony. I tried to put on a brave face. I realized how traumatizing that must have been for my sister, so I texted her and she has no memory of it! So funny.

I wore a hard neck brace this time, with strict instructions to keep it on and not move my neck. The bone needed to fuse over time, basically like a slow welding inside my neck. My mother and I had learned our lesson and this time took hair-washing much slower. 

I did make the rookie mistake of taking it off while lying outside in the sun, airing my neck out and trying to catch a tan. I now have a nice reddish scar on the front of my neck that glows a little if I've had too much to drink. 

My neck brace stayed on the duration of the summer. At one point I was healed enough to travel and visited my grandparents for what was the last time I would see my Grandfather (Opa) alive. He had Alzheimers, but he remembered us. and did not seem thrown off by the fact that I had a neck brace on. One afternoon we sat on a bench waiting for my parents to pick us up, two invalids. It was a sweet, sweet moment with just the two of us. We sat there on this mild summer day, watching the trees swaying in the wind, as the birds chirped and the sun shone down on us, and Opa gestured towards all of it, saying "I'm so lucky to be here, isn't it so beautiful?" I'm so grateful for that moment, even with the neck brace. It's my last memory of Opa.

My recovery was much easier after this surgery, but it was still a long haul. When it was time to go back to college, I was hesitant, feeling like I had only just healed. My sorority at the time was hesitant to give me a pass on "Rush" week. I barely participated and felt guilty like I was using my neck surgery as an excuse not to do anything (even though I hated Rush in the first place). Looking back - what the actual hell was I thinking? Of course I shouldn't have done any of that! I had just had SPINAL surgery! 

After each surgery I felt fragile, like I would never be whole again. And yes, I did heal, but I think I fooled myself when I said I was 100% back to normal. No I wasn't. I had missing bones, a fused spinal column, screws in my neck that I was terrified would set off the airport security checks. (They didn't.) And my muscles were still tired. My hands were still numb, even more so than before, the damage again was done, and the surgery was again preventative, not corrective.

I told that surgeon: "Thank you, and I never want to see the likes of you again." The surgeon seemed confident I was never to return. Which was true, I would never return to him again because life goes on and you find a new neurosurgeon in your current town the next time something happens. Which apparently, there is always a next time once you start messing with the spinal column. 

No one told me that.

Fast forward over ten years, I'm a wife and a mother with a master's degree. 

I woke up in the middle of the night with excruciating pain in my right arm. No warning, just shooting pain. I couldn't adjust anything, crack anything, take anything to make the pain go away. At first I thought: wow, this is the next level of sleeping on your neck wrong. Then I started to realize: shit, no, this is something more dangerous. My right hand had become significantly less functional. This was my neck doing its thing again. I had allowed time and my two healthy pregnancies temporarily blind me to the frailty of my body. 

Off to the neurosurgeon I went. This time on my own insurance, with two children, and a husband who had never seen a person close to him go through major surgery. 

I was smart, got two opinions. Neither of them suggested anything other than surgery. The only difference was the type of surgery. This time was different. This time I had pain. Apparently I was "lucky" that hadn't happened before. I had a disc at the bottom of my neck pressing on my spinal cord, popped out by the pressure of holding up my head without any help from the discs that had disappeared so many years ago. Once I settled on the surgeon, he said, we need to move quickly, you may lose the use of your right hand if you go too long. So on a Monday, I scheduled my spinal surgery for that Friday. 

A discectomy with a fusion of C6-7 going through the front again. Two scars, almost perfectly lined up on the front of my neck. 

I got to the hospital that Friday morning and said "I'm here to get cut up." The receptionist was notably shocked and said she'd never had anyone say that to her. I felt like saying, well you've never had me, so here I am with my morbid humor, trying to make my way through my third spinal surgery. Also, really, no one had said that? 

My Mom was there, as she had been for every surgery, it would be a strange bond we would have. This time she was there more as a support to my husband, and to be with the kids. I went in for surgery. I didn't allow myself time to think about things or feel things. I was focused on the pain and the hope that the surgery would relieve it.

When I woke up, I saw my husband, Jason, and my Mom walk into my hospital room with looks of anticipation, and concern? I said "Hi!" And they both laughed and smiled and visibly relaxed. Apparently, while I was in the recovery room, the surgeon had told them I wasn't talking yet, and he noted that he had to really move things around in my neck, so there was a slight chance my voice would be different, or maybe perhaps, gone. You know, small side effect. My speaking was a relief to them. I had no idea that was even a risk I had taken. Of course, the other risks like paralysis were more prominent on the list of mentionables.

I had been told earlier that I may have to wear the kind of neck brace with screws in my head. I was.... not looking forward to this possibility. I didn't end up having to do that, although the surgeon never really indicated why. He did say my bones were like butter, and not in a good way. Everything was very fragile in there. But as all neurosurgeons say when they're finished: "I fixed it and you're good to go!" 

The nerve pain did not go away immediately. The surgeon said it may take some time, but it "should" go away. I had spent a few weeks incapacitated by the pain, and now in recovery, I was still in pain with some extra incisions. I was terrified that this could be my new normal, and that the relief would never come.

One morning, about a week after surgery, I woke up, and the shooting pain was gone. I was afraid to even sit up, because I was afraid it would break the spell. I knew that the morning was a good time to judge if the pain had gone because usually the pain relievers had started to wear off by this point. I sat up, and the magic remained. No nerve pain. I started crying, calling my mom and my husband in to tell them the good news. 

The next time I cried, it was after my sweet boys had danced around me, but very careful not to touch mommy, because if they jumped on me or tried to hug me in their usual rough way, my fusion might be jeopardized. So they were trained to be gentle with me. I cried because I missed them. They were there, but at arms length. They had to be so careful, we had to be so careful, that I felt like I had some invisible bubble around me. I was so tired of being fragile. SO tired of it. I didn't get to fully participate in the life right in front of me.

In due time, I healed, and my surgery became another memory I would tuck away and put behind me. I asked this surgeon: "I should be done now, right?" He said I should, and that it wasn't common for the discs below the sternum (past the cervical spine) to buckle under pressure. Essentially, now that my entire neck was essentially fused, there wasn't anything left to pop out. The next set of discs were supported by a larger system than just neck muscles.

About a year or two later, after working full time as a hospice chaplain, my hands started doing something weird. If I leaned to one side and put weight on my elbow, they would go numb or twitch. I went back to my neurosurgeon who told me the medical equivalent of "stop doing that." He said I basically had a wonky nerve now, it had been messed with to the point where now all the signals were a little crossed and electrified. Any slight pressure on the nerve would be translated exponentially into some sensation, be it numbness, twitchiness, or pain. He said if the wonkiness turned to pain, there are procedures that could be done to remove the nerve from the elbow where it was getting tight. I was like, seriously, I'll just "stop doing that." I still have to be mindful of the positions of my hands and arms, I even have to switch my hands often while driving, because I mindlessly rest my elbows on the door or armrest, making my hands weird.

I definitely can't lie sideways like the French girls, I'll get numb hands. Super sexy.

I moved to a new town, and so far I have not had to have any new surgeries. *knock on wood* However I have had a few MRIs, where they found a herniated disk in my lumbar (lower back) that gives me mild pain on good days, and the week of Thanksgiving when I was hosting my family: major pain. Fun.

Strangely enough, the first time I really came to grips with all that I have lost to this narrow spinal canal, was when I was painting our family room a few years ago. I am cheap and stubborn. So when I wanted to change the color of my family room, I decided I could do it all by myself, thankyouverymuch. 

So I did, but what would take a normal person a day or two at most, took me a week. I was so angry at myself. I got so tired so quickly. I couldn't keep my head up long enough to paint the top trim. Like, I literally couldn't hold my head up. I had to hold the back of my head with one hand while painting with the other, and then switch when my hand got tired.

Then, and only then, did I stop and think about why that might be the case. And why this wasn't normal.

When I finally got down and took stock, I realized, holy shit, I've had to hold my head up with my hands for hours to look at what I'm painting because I have had three spinal surgeries. My neck can't look up for long periods of time. It just can't. My back was aching because it's jacked up. I've "thrown it out" at least three or four times and I'm not 40 yet. 

And that's when I realized that I should not physically be painting a family room. 

I need you to know that I literally had not considered this. I was so in denial of my body's history that I did not understand why I had to hold my head up. I was fighting myself because I was so worried that I was just being lazy. Instead of listening to my body who was saying "STOP DOING THAT!" I just pushed forward until all I could physically do was lie exhausted on my back in the middle of a half-painted room. And I felt guilty! Lazy! Why couldn't I paint a damn room?! 

I think my denial was partially a result of my continued adjustment. I have become a master of adjusting. I'm so good at it that I don't even realize I'm doing it, or why. With my hearing loss, I have been over-performing physically every day of my life in order to be as close to normal as I can be. So of course the normal warning signs like exhaustion and weariness were lost on me.

Here is what my grief has to say about that: I'm *so* tired of adjusting. 

I've adjusted everything to be able to hear people and engage in conversation. I have adjusted everything to be able to physically move and function without things being too difficult or cumbersome, and without needing any help. I'm constantly adjusting down, adjusting to function at increasingly lower levels. I'm so tired of it. I'm tired of needing to hold my head at the end of the day because my neck muscles are tired. This happens at the end of every day and I didn't even notice until the painting incident. I'm tired of lying flat on my back at night and feeling the pain radiate down my spine. I'm tired of knowing that I can't do certain things but still feeling lazy about it because I can't say something obvious like: I have "spine-weak-muscle-inconsistent-nerve-weirdness-ism." But that's not a thing, and my thing isn't a word I can say. So I continue to navigate whether I can do something, or whether I shouldn't, or whether I am lazy, or whether I'm wise for not trying. I still don't know those boundaries. 

I watch these dancers on the TV and my soul aches, my body just sighs. I will never be able to move my body like that. That makes me sad. I wish I could still do a back bend. I used to be able to do a backwards dive into the pool.

Now I have stopped doing all of that. And I miss it. More than I realized.