Don’t sweat the sweat

For the first time since my injury, I broke an actual sweat a couple days ago. My arms were moist, my chest, neck and upper back were a little wet and I could actually wipe off some sweat off the top of my head that was slipping out under the acupuncture needles that were buried into my scalp.

Why am I pointing this out you may wonder?

One of the many less noticed but still significant aspects of my Spinal Cord Injury is the effect on body temperature, specifically the lack of ability to sweat. It’s not something that people think about very often, but sweating is extremely important in maintaining body temperature and cooling the body down when it starts to heat up. The nerves that control the ability to sweat are affected by the damage to the spinal cord, particularly in an injury like mine, high up in the spine in the cervical vertebrae.

I first noticed the challenges of not sweating just three months after my accident. On an unseasonably hot day in early October, I was enjoying a rare outdoor lunch, sitting in the sun in a beautiful park when after only a few minutes I started feeling very hot. I touched my head and face to check for perspiration but to my surprise, my skin felt as dry as leather. Not one bead of sweat. I stayed a bit longer only to find that I was unbearably hot.

I have to take a quick break from the story to explain how unusual this was. Before my accident, I LOVED being in the sun. Thanks to my ethnic heritage and my quick tanning skin, I’ve been able to avoid getting sunburned for most of my life. I would lay on the beach in direct sun for hours and hours, I was the guy at the restaurant who didn’t want the table in the shade, and I suffered immensely when I had an office job and had to accept being inside on a bright, beautiful sunny day. So to be overheating after only a few minutes of sunshine was an entirely new experience for me…

I cut the lunch party short and moved to the shade to escape the sun, with the hopes that I would cool down and continue my outdoor picnic. While it definitely felt better in the shade, I found that I just couldn’t bring my body temperature down. I started getting more and more uncomfortable and eventually decided that it was time to go. Sitting in the car as we drove down the hill, I checked myself for any sign of sweat again. Nothing. It only took me a few minutes to realize that I had to do something. We stopped the car and I poured two full liters of water over my head and body, right there in the passenger seat of the car effectively drenching the car seat and dashboard. Ahhhhh relief, finally. Luckily, my body temperature did come down but I learned that the lack of ability to sweat was something I had to be aware of in future situations.

In the months since this incident, I’ve had many intense workouts. I’ve challenged myself physically in novel ways and have pushed my limits on numerous occasions. Yet, despite these exhausting workouts, I’ve only had a few little drops of sweat making a cameo on my body before they disappear again. So to finally have a moment where I actually broke a sweat that lasted more than a few seconds certainly felt like a small triumph. The problem certainly isn’t solved and I’m not sure how soon I’ll get back to being my previous comfortably-sweating-during-physical-activity-yet-not-embarassingly-so self but at least it’s a start. I hope to be drenching many a exercise mat quite soon with my perspired goodness. Yup, that just got said.

Spurts and plateaus or a slow and steady climb?

How do you measure progress? How do you know how much better something is than it was one day before? There are many things that can be measured and captured quantitatively but when it comes to matters of health or the body, how do you know if you improved more this month or two months ago?

I’m constantly being asked:  “How are you doing? You noticing any improvements? What’s new with the recovery Arash?” These reasonable and seemingly straightforward questions can be nearly impossible for me to answer. On a basic level, I would assume I’m doing better that day than the previous day, but on a deeper level it’s sometimes really difficult to understand if and how much I’m improving. This is one of the most frustrating elements of dealing with such a devastating injury that has damaged me in so many ways.

One of the earliest posts I wrote on this blog was about being on A Crowded Battlefield and how overwhelming it can feel to deal with so many parts of my body being damaged and the challenges of focusing on one thing and being presented with another challenge. In the same way, when I get asked those questions, I have to do a quick analysis of about 37 different body parts and functions and assess if and how much each of those has improved and if that’s more of an improvement than the last time I checked (probably just a few hours before).

In my head, it may go something like this: “How am I doing? Well, let’s start with the obvious: still can’t move my legs. My feet dangle as limp as they have since I began the hospital adventure seven months ago. I still can’t use a fork and knife because I don’t have enough strength in my core to sit up and use both of my hands freely. Speaking of hands, funny you should ask… yes I can type and hold a glass of water and push myself around in my wheelchair (have I mentioned how much I hate my wheelchair??!!) but I can barely squeeze the shampoo out of the bottle and forget about unscrewing an unopened jar or holding anything heavier than a book in my hand. Ahh but the toe, yes alas I can still wiggle my pinky toe. But wait wasn’t that a while ago that I started to wiggle my toe and thought that it was going to snowball into other major improvements, and oh yeah, that hasn’t happened quite yet…” It goes on and on but you get the picture.

All of this brings me back to my original motivation behind this post, how do I measure progress in this post-injury/still unfamiliar body of mine? Maybe the hardest question for me to answer is whether my recovery goes in spurts and plateaus or if it’s a painfully slow and incremental process. There are moments (like today and a majority of the last couple weeks) where I do feel like I’ve undoubtedly plateaued. Some of the exercises I did today don’t feel much stronger than they did last week, or even last month. My hands are so incredibly slow to improve and there’s little I can do to expedite their growth. Standing and walking on my own seem as far away as they ever have been.

But just when it seems like I’m unimaginably stuck on this plateau, I think about one thing: my body is constantly changing. Whether I feel stronger today than I did yesterday is hard to determine but I might feel ever so slightly different than I did previously. And maybe that’s the answer, maybe improvement isn’t always obvious or clear to me, but maybe I have to accept that change is the substitute for progress. After all, if my body was actually stuck and didn’t want to get any better, why would there be so many changes, so many tingles and burns and spasms and unfamiliar sensations and sore muscles? In that case, then maybe my recovery is more of an incremental climb, a barely upward sloped line glacially moving towards the top and signifying a very slow but consistent progressive process. I suppose I still can’t make up my mind on how to measure or explain my progress so just bear with me if I stumble or mumble a bit the next time you ask me how I’m doing.

Being short is no fun

There are MANY things I hate about being in a wheelchair. I won’t even begin to list them now… But let me share just one frustration that I’ve noticed more recently: being short.

Since I’m sitting down all the time, everyone becomes a towering, basketball player-like presence literally (not metaphorically) looking down at me. I’m sure there are plenty of shorter people out there thinking, “thanks for pointing out the obvious genius, but this is what I’ve been going through my whole life”. I admit, I’ve never really understood the plight of shortness and to be honest, I’m not exactly tall either, 5’11” to be exact. So while I’ve never exactly been an imposing presence due to my height, the shortness of sitting down is a particularly humbling experience. I must be four foot something sitting in this damn chair, a height I haven’t been since elementary school.

It sucks having to look up at people all the time. It’s no fun having to crane my neck – yes the same neck I broke two vertebra in that still doesn’t have the same range in motion – and train my eyes to look towards the clouds in order to catch the passing glance of a growing child who just hit five feet as he walks past me. Every time I greet a friend or give a hug, it bothers me so much that they have to bend down and almost fall over just to get closer to me. Having a bunch of people standing around me talking reminds me of being a little kid, thinking that the towering adults could have secret “tall” conversations that I couldn’t hear and wishing I could be part of the club.

One of the many ways in which mental strength can help in recovery from SCI is the visualization of healing and sending visual images that confirm one’s objectives to the brain. Whenever I do standing or walking exercises, the therapists are quick to bring a mirror in my view. Seeing myself standing is a positive response and will help my body remember (and recover) the sensation of being on my own two feet. You can imagine how much I enjoy the few but coveted minutes of standing I get not only for the sensation of stretching my body and bearing weight on my legs, but because it reminds me of what it feels like to stand tall, look people at eye level and rid myself of craning my neck up towards people and feeling like I’m four feet tall.

The nerves they burn burn burn

Less than 10 days after my injury, upon admission to inpatient rehab in a new hospital, I was on my way to get X-rays when the technician started chatting with me. Although I was running a consistent 101 degree fever and still very heavily medicated, I was able to describe him the basics of my injury. “Do you have any burning yet?” he asked me, to which I told him no with a befuddled look. He followed up and said, “I’ve had nerve damage dude, it will heal over time but wait ’til you get the burning. That’s a trip.” A few weeks later, in mid-August, I realized what he meant and started to feel the burning in my forearms.

The vertebra I had broken in my accident were in charge of the nerves that run down the forearms and through the fingertips. As a result, the first signs of those nerves healing was an intense burning sensation through my arms and fingers. It’s difficult to describe exactly, but I would say it feels like a string that’s on fire running through the length of my forearm which then branches off into my fingers. The intense burning feels like it’s just below the surface of my skin, almost like an itch, so I naturally scratch that area thinking that it will help it somehow, but it never really does much. It occurs randomly, lasts for a few minutes but sometimes much longer and since there’s little I can do about it, I have no choice but to accept it. It definitely hurts but more than anything, it’s a very strange sensation, unlike anything I’ve ever experienced.

Doctors told me this is normal and an indication that those nerves are healing and regenerating. I’ve had the burning in my arms and fingers for the last four months or so, but it occurs less frequently than it used to. Now I’ve started to feel a similar burning sensation (but not as itchy) in my abs and low back, which makes sense if you think my spinal cord is healing from the top down and now reaching those levels in my mid-body where I have about 60-70% sensation. While it’s an odd feeling, I do somewhat appreciate the burning since it’s an indication of healing. Now I try to embrace this burning and imagine that the fires burning in each millimeter of my body are happy fires that are bringing my body back to normal.

A Crowded Battlefield (Part 2)

Continuing on from my previous post about the military battlefield analogy I used to describe dealing with SCI, I want to highlight more specifically what I meant.

I think that for many people I talk to or meet who learn of my condition, their thought is that my inability to use my lower body is the absolute thing I’m concerned with. I tell them about my intensive therapy and exercise that I’m doing six days a week and their rightful assumption is that it’s all intended for me to be able to reengage my legs. In my military analogy from my last post, the battle to regain function of my legs is the army facing me straight ahead. It’s obviously the most significant challenge for me and the one for which I’ve most prepared.

While that is a mostly correct assumption, one of the most frustrating aspects of this injury, and its ensuing recovery, is that my legs are one of MANY challenges I struggle with everyday. Because the level of my injury was so high up on my spine (C5 and C6 vertebra in my neck), there are many functions that are controlled by nerves further down my spine, that I do not have full control of yet.

Here are examples of just three:

Hands – This is probably my biggest day-to-day frustration. My fingers and hands have regained a lot of function and improved considerably but they’re still at about 50% of what they should be. My grip is still weak and I can’t hold certain things in one hand (i.e. laptop, heavy book, plate of food). My fingers are stiff and not dextrous so simple things like buttoning up a shirt or tying my shoes is a massive struggle. This also prevents me from cooking, playing guitar and doing other hobbies that are so important to me.

Core/trunk – This has improved tremendously and is the area I’m exercising the most in all of my therapy, but it’s still weak. Other than a flabby, soft stomach (which isn’t great for my ego…), it means that basic mobility and moving around in a seated position is very difficult. Dropping something on the ground or reaching for something becomes a risk of falling out of my chair. Cutting food with a fork and knife is still impossible because that would involve  both my hands and I don’t have the strength yet to sit and use both arms unsupported. So I can only still use one hand to eat, and the other to stabilize myself.

Shoulders – To be clear, my shoulders are working 100%, and they’re stronger than ever but that’s where the challenge comes in. I use my arms for EVERYTHING. Aside from moving around in the wheelchair, throughout the day I have to lift up my legs and move them with my arms. Ok so I do have thin legs but they still weigh a lot! Every time I transition from my wheelchair to the car or to bed or to the couch, it means supporting my entire body weight in my shoulders and arms. The bottom line is, my shoulders are exhausted all the time. I have massive knots and tight spots throughout my back, shoulders and neck. Massage anyone??

Aside from these three functions I’ve described, there are many more that aren’t 100% but I think this gives a more complete sense of what dealing with a SCI is like. It’s not just the legs. One day or one hour, it’s one challenge, the next it’s another. I may think I’m improving one thing but as soon as I want to celebrate that accomplishment, I realize four other things that aren’t working. Every day gets split up into segments of dealing with one body part at a time and trying to measure that progress becomes lost in the attempt to improve other body parts. Back to my battlefield analogy, it’s a feeling of being attacked on so many fronts, from so many places. Some days, I don’t know where to focus my efforts because it’s all so overwhelming.

I know that as I improve and as those functions come back, I can focus more energy in less places and feel less overwhelmed. But for now, the battlefield remains crowded…

A Crowded Battlefield (Part 1)

I’m not usually big on military or war analogies but the following is the most effective and accurate way I can describe the frustrating and overwhelming complexity of dealing with a Spinal Cord Injury (SCI) on a daily basis:

Imagine you’re on a battlefield, looking straight ahead to the line of enemy troops facing you, readying their imminent attack. Your army is significantly weakened from a recent massive battle that took some of your best troops, yet your will is still strong. There is no retreat. You have no choice but to undertake this fight, for any chance of victory or freedom lies on the other side of the army facing you. Haste as they may be, your battle strategies have been drawn, your contingency plans have been made, and for better or worse, you’re ready to engage. You give the signal to your troops to attack and you begin your advance towards the enemy.

Just seconds before you reach the troops facing you, you notice a massive army coming at you from the left. You urgently notify your soldiers and as soon as you’re getting ready to face the two imposing forces, you can’t help but notice an even larger army aggressively stampeding towards you from the right side. You barely have time to process this next challenge before you notice that somehow, a horde of fresh enemy troops is advancing upon you from behind. You are now being attacked from all sides and your battered army is facing almost certain defeat. You have seconds to shout out orders to your loyal soldiers who are surrounded and badly outnumbered, when you realize that in the sky above you, there are planes dropping bombs with the utmost intention to cause as many casualties as possible. Help at last! 

You weren’t expecting any allies, yet you hope more than anything that somehow, these planes are on your side, that they will help you fight the four armies you face in this now crowded battlefield. Immediately though, you notice that with pinpoint accuracy, the bombs are falling on your troops. You have no allies.

You’re overwhelmed, frightened beyond words, and know that adrenaline and pure shock are the only emotions that will allow you to fight to your apparently inescapable death. It can’t get worse, right? It does. The ground beneath you violently shakes and knocks half of your army on their asses. The earth you stand on is trembling and cracking, mimicking the most violent earthquake you could imagine. You are literally fighting 360 degrees around you. You can almost taste the metallic sting of your own blood. You close your eyes, wanting this nightmare to end; to wake up and see that this hellish scenario was all too overwhelming to be real…

(To be continued…)