"I'd be lying if I told you I'd never paralyzed someone."
- brain surgeon (not the one who paralyzed my arm)
Paralysis gets its own page for a few reasons:
1) It has had a huge impact on me
2) It is absolutely fascinating
3) It was a total surprise to me (yet apparently, it isn't uncommon)
As I said before, my neurosurgeon nicked my healthy brain during my surgery. There are a couple of reasons why:
1) My tumor looked and felt just like my healthy brain (read more here)
2) He wanted to get as much of the tumor as possible out of my brain. We don't want tumor in our brains!
This little error severed the pathway that my brain used to communicate with my left arm and hand. Because of this, I could neither move nor feel this extremity.
*Remember, the right side of your brain controls the left side of your body (and therefore the left side of your brain controls the right side of your body)
*Also remember that this is one of the many reasons some brain tumors are inoperable! Some are so deep that a surgeon would have to cut through too much healthy stuff to reach it, and some are too tangled up in areas of the brain where you have good stuff going on. Arm function is of minimal importance when compared with other things your brain handles.
When I awoke from brain surgery, I felt a painful pins and needles sensation from my shoulder down and my arm seemed heavy (even though I was lying in bed). I couldn’t move a finger and I couldn’t feel touch.
The pins and needles feeling subsided within a few days, at which point I felt nothing at all. The neurosurgeon sort of shrugged and indicated that it probably wasn’t permanently paralyzed - that I had a window of time, maybe 18 months, where I could regain some function if I worked at it. He could not say exactly how much I would regain or how much time I had.
I was granted a week long stay in the hospital’s rehab unit. Rehab is where people go when they need a bit of time to safely transition out of the hospital. During this hospital stay, I learned how to do two handed things with one hand. I also started to try to get my brain to "find" my arm again.
And this is where brains get good. Like motivational speaker you-can-do-anything-you-set-your-mind-to good. (You can't, but brains are incredible). Anyway, my subconscious brain was just as shocked as my conscious brain - it desperately wanted to find my arm! An arm is not something that brains are accustomed to losing. Occupational therapy was the tool to facilitate that process.
In OT, I learned that in order for my brain to find my arm, it had to create new neural pathways. A neural pathway is the highway your brain uses to do its business. Imagine a footpath in the woods that you travel daily. Suddenly a huge tree has fallen across that path and you need to create another path to reach your destination. There are a lot of dense woods around that you must clear but it is possible to create another path.
(This is not my metaphor, but my therapist’s when she was telling me about neuroplasticity. We were working on my anxiety disorder, but I imagine this is exactly what happened with my arm). For whatever reason, however, unlike anxiety, there was a limited window of time for my arm.
So how does one go about making a new path in their brain to find a severed appendage?
It seems like a Magic Schoolbus themed computer game that was designed in the early 90s, I know. Hold onto your hats, the reality is wild:
1) Propioceptive feedback.
This stuff is great. Propioception is essentially our bodies' way of orienting itself in space - of sensing where it begins and ends.
From my understanding, proprioceptive feedback is basically the lost thing sending out a distress signal, shouting "I'm here!" Because my nerves were intact, but the primary communication line had been cut, both sides (my arm lost at sea, and my brain the coast guard) were trying to create a feedback loop. That communication was the first step in the rescue mission.
So if someone rubbed my left hand, my nerves were sending out faint signals that the depths of my brain might pick up on in time.
Because my muscles weren’t engaged at all, my arm was practically hanging from the socket. On day 1 of rehab, I was fitted for a sling, designed to prevent my arm from just dangling around. This magical strap had the added benefit of providing my brain constant proprioceptic feedback.
My palm rested at the bottom of it (unlike a typical, broken arm type sling that cradles your arm in front of you). The weight of my arm in my palm perpetually sent information to my brain - I’m here!
I didn't even need to do anything or think about it. This is my favorite type of exercise (though the only one of its type that seems to work).
This is one of the reasons why it is arguably better to have a leg paralyzed. It is difficult for the leg not to get constant feedback. The other thing is that there aren't so many minute muscles in a leg and foot - there are reasons we don't often chop vegetables or play xylophones with our feet.
Your brain is trying to feel your arm but it also wants visual feedback. My OTs suggested that I do my homework in front of a mirror because it would bulk up my brain’s understanding of what was happening (my unconscious brain learned from failed movements in ways that my conscious brain cannot comprehend or explain).
I said above that I didn’t have to think about my arm in the sling for my brain to benefit from its existence. So imagine how much more impactful it was when I thought about my arm in that sling.
Take the first scenario described above: my dad holds my hand. I can’t feel it, but it is quietly helping my brain even if I am sleeping. Now if I am awake and aware that he is holding my hand, it is exponentially beneficial. You see, my brain knows what it feels like to have my hand held so it scans for that feeling.
Need more help? When you try on new pants, you immediately feel how comfortable they are. You can look down at them to see how they look from your perspective. You can look in a mirror to get more information on how they look. You can even look in one of those fancy department store triptych mirrors to see how they look from the sides.
Similarly, awareness and vision help with lost limbs, and mirrors add another member to your search party.
To help your brain make sense of what you are asking it to do, you do it on both sides. So when I sat in front of the mirror, I told myself "shrug your shoulders." As I strained to shrug my shoulders, I watched my right side obey. My brain was receiving feedback about the command and the desired response.
The next day, perhaps, I performed the same exercise, my right shoulder goes up to my ear, and the left twitches. Progress! Later in the week, the left might be able to shrug an inch. There was not always steady progress, and frequently there was no discernable progress at all, which is why time and multiple approaches are important.
I have done a lot of physical therapy in my life. I'm sure somewhere out there is a pretty little Venn diagram that illustrates the similarities and differences between PT and OT, but there is one moment that stands out as my eureka. Obviously going to these visits, I was looking at my arm and hand. I was thinking about my arm and hand. In all this looking and thinking, it was easy to forget that there wasn't a problem with either my arm or hand - the problem was in my ding dang brain.
On this one visit, my OT put both of my hands palms up on the table. Of course I was sitting in front of the mirror. She told me to turn my hands over so that they were palms down on the table. I tried and tried. I watched my right hand oblige with each request as I intensely focused on the left. My right hand turned so gently and easily and I watched my face grimace, my left foot move, my left butt cheek clench, my shoulder lift as I tried to turn the left. I was frustrated and exhausted. I couldn't figure it out. The OT saw I was losing steam. She said, "Imagine there is a basketball resting in your left hand and you want to dribble it on the floor." My left hand immediately turned over. A miracle, the alchemist!
Ding Dang Sidenote: I tried to do it again and couldn’t. Aw geez, just like that I lost it! The OT said, it’s ok, your brain is exhausted, don’t be discouraged, this shows that the pathway is there. Sure enough, I could turn my hand over easily and repeatedly the very next day.
5) Say it like Oprah - technology!
At a session, my OT put a super-bionic-looking-cast-like-thing on my forearm. This machine - Bioness - sent electric pulses down my arm to activate the muscles of my hand (remedial anatomy lesson to follow). When it was on (and adjusted correctly so the nodes hit the correct muscles), my hand would open. This is absolutely amazing if you haven't seen your hand move in several weeks, and really weird to have it move without you telling it to. The Bioness machine would pulse on - hand opens - and stop, hand closes. I got to wear it for maybe 20 to 45 minutes at a time (or 5 minutes? I honestly don't remember). My instructions were to watch my hand and think about it opening before the pulse (which came at a steady interval).
I was also allowed to borrow the Bioness's much cheaper ancestor to use on my shoulder at home. This was essentially a battery pack with four (I think?) long wires with sticky nodes at the end. When attached, it would lift my shoulder up and roll it back. (These things are amazing and should be available in classrooms to help children develop a natural interest in electricity and circuits).
Image from Bioness website, showcasing their nifty exoskeleton
That quick anatomy lesson:
1) A lot of motions that we think originate in one body part actually come from muscles farther away. For example, making a fist. It seems like you make a fist with your hand (well, you do, geez) but some of those major muscles are up in your forearm. Similarly, in my eureka story above, I would have thought that the motion of turning my hand over involved, well, my hand or wrist. But that motion comes from your elbow. It seems obvious when you think about it, but my ding dang brain had never put two and two together.
2) So how do I know this now? This is really fascinating stuff! I know this because if you are paralyzed due to my type of brain injury AND you are regaining function, your brain works from the top down. My shoulder was the first thing I was able to move, followed by turning over my hand, then bending my elbow, and opening my hand. I worked for a long time on my wrist and hand, and have done well, but the hand has a lot of little muscles. I will never regain all the dexterity and fine motor skills that my hand once had, but, what's a girl to do?
3) Sensation returns in a different way altogether. Instead of activating from shoulder to fingertip as my muscles had done, my ability to feel/nerves returned in a patchwork way. It sounds nuts, it is nuts, but I could feel certain areas before others. The last area to regain sensation was the area by my triceps (and I still feel like the sensation there is a little muddied).
4) Certain muscles of the body are naturally stronger than others. Specifically, flexors are stronger than their extensor counterparts. (This means that the biceps are stronger than the triceps). This makes sense - our bodies are naturally inclined to curl in. I bring this up because machines like the Bioness helped open my hand, extend my fingers. When the electric pulse stopped, my hand relaxed. While it didn't tighten into a clenched fist, I didn't have the muscles for that, its relaxed position is more like a fist - those muscles are easier to find and exercise than those extensors.
While I was experiencing the wonders of my brain, I struggled at home. It's not just a matter of living without the aid of your left hand, it's also living in spite of it. I carried it around with my right hand when it wasn't in my sling. I sat on it unintentionally and regularly, only realizing it when my butt or leg became uncomfortable.
Imagine a simple daily activity, say putting on deodorant. To uncap it, I would hold the stick between my legs and remove the cap with my right hand. I then set the deodorant down on the counter, picked up my left hand with my right and placed my left hand on the sink. From there I'd squat so my left arm was lifted and apply. I'd just monkey arm the right side (I still do this).
This cutie demonstrating how I apply deodorant to my right armpit with my right arm (photo swiped from #kczoo twitter page)
This becomes normal very quickly. It's amazing how adaptable we are.
Another problem started, however, when the therapists and doctors told me to start integrating my arm and hand into everyday activities. One neuro oncologist told me to start brushing my teeth with my left hand, which was laughable. (Psst: A lot of these guys have NO IDEA what they are saying. He was trying to be helpful, but he was waaay off the mark). There was no way, there is no way (and I'm an optimist). I did decide, however, that I could probably try to open my toothpaste with both hands.
But how? Why does someone need two hands to open toothpaste? My brain - the adaptable creature - had created a new set of problems for me. How do I use my left hand anyway? I still struggle with this sometimes. I watch people for ideas but it is like watching ballerinas effortlessly and silently leap across the stage. You see it, you think, "I can do that, maybe not that well, but something like it," and you try. And it goes just as horribly as your sober brain knew it would.
All of my occupational therapy stopped within a year of surgery. I tried to get more later on, but didn’t have any luck (a story for another time). Most of my gains were made in that first year.
It is really difficult for me to estimate how much of my arm and hand abilities I’ve regained. Maybe 80%? Regardless, I’ve done well. I’m lightyears from where I started in rehab.
I’m no longer threading my arm into my shirt with the help of my teeth. In fact, I put on shirts the same way that I always did. My muscles work easily and fluidly in this exercise, without hiccup.
Many other actions come effortlessly, like gesturing while I speak. My grip is great, I can carry grocery bags and hold the dog’s leash. I'm strong(ish). I can move furniture.
Though I haven't surveyed people I've met post-paralysis, I'd be willing to bet that most don't notice my struggles. My arm is a really good prop, and performs a lot of gross functions with ease.
I have trained a lot of daily activities so that I use two hands without thinking. I take the toothbrush from the stand with my right hand, give it to my left, which holds it as I squeeze toothpaste onto it with my right. Switch the toothbrush to my right and brush. Seamless. I hold the carrot to the cutting board with my left hand while I chop with my right. I use my left hand to trigger the turn signal while driving. I even press the A and the S keys with my left hand when I type (most of the time).
Looks can be deceptive.
Language does not exist that can effectively describe the gaps, the lags, the deficits. My left arm is much slower, my shoulder and elbows have a limited range of motion. My wrist is weak so I have trouble holding things steady or straight. I can’t isolate muscles in my hand well - I can’t give someone the finger (not that I ever have). I can’t operate my phone at all with my left hand - can’t answer a call, end a call, start a podcast.
I can’t manipulate small objects. If I were to focus, I could lean over and pick a penny up off the ground with my left hand. It might look slow and awkward to an onlooker, but I could do it. I couldn’t slip that penny into my palm or into my pocket, couldn’t turn it over in my hand.
I think about how to use my left hand every day, all these years later. Though I use it constantly and without thinking, there are times when I have to remind myself "use your left hand, it could help you with this project."
There are also times when I know I should incorporate my left into the job, but I can't rally the energy - I can load the washer faster with one hand so I just do it.
Every so often, I feel stymied by my left hand. I know I should be using it but I can't even generate ideas for how I would use it. It's like I'm in a twisted game show where contestants are told that it is imperative to use a casserole dish to apply their makeup. Huh? That doesn't even make sense. How would I? How could I? Why? Is this necessary?
Every time I visit my neuro oncologist, I perform a handful of exercises for him:
I squeeze his fingers (like a baby). I have good grip.
I hold my hand flat out in front of me, fingers spread open, and he squeezes them together (I try to resist).
He holds up a finger. I touch his finger and touch my nose, touch his finger, touch my nose. My arm is always unsteady - my hand wavers and jerks, it doesn’t smoothly move through the air - but I can successfully do the exercise (in about twice the time I can do it with my right finger)
He runs his fingers down my forearms - it feels pretty much the same on both sides
He tests my reflexes. I’m always hyperreflexive on the left (indicative of lower muscle tone)
These exercises don’t change. My performance seems to be the same every time. They don’t measure much.
Though I can chop vegetables, I cannot use a fork and knife to cut food on my plate. One needs wrist stability to hold that fork upright. I can hold it for an excruciating moment while I contort my body and face before my wrist goes limp and my elbow tucks in.
Nobody cares about these shifty little nuances, not even me most of the time. But in certain situations I feel them x1000.
I can carry neither a plate of food nor a drink with my left hand, I cannot pick up my best friend's baby. If someone hands me something, I must receive it with my right and feed it to my left.
There are two dog bowls at my house. One I pick up off the floor with my left hand without thinking twice a day. The other I'd be unable to pry from the floor if you gave me $100. They look similar, but dexterity is a fickle thing that you cannot fully appreciate until it's gone.
The brain is so sensitive! A little cut, a few millimeters off target, and you can lose a limb. The brain is also so resilient! It can create new pathways, it can learn new tricks! You can create new habits and drop old ones. The delicacy and the fortitude - if there is a dingdangbrain theme, this is it.