When the Pain Began | Dealing with Disability

In many ways, I was thriving.

As a college freshman, I felt like I had it all figured out. Sure, I failed calculus my first semester, but that was a whole new world of mathematics that didn’t make sense—and I couldn’t see the need for it. I was in the process of switching my major over to Mass Communications. I wasn’t entirely sure what the heck to do with a Mass Comm degree, but I figured I had 4 years to figure it out.

I had a great group of friends, most of whom I graduated with. I had started plugging into a new church that seemed like a great fit and everything seemed to be on a good track. I had a job I loved, as far as fast-food jobs go. The culture was great, they paid well, and they valued me.

I was a little exhausted, as most college students are in perpetuity. I was a full-time student, I worked 30 hours a week, and I had a full-time social life. Sleep is for the old, man.

When I woke up one morning in January with a little bit of neck pain, it was easy to write it off as a consequence of my go-go-go lifestyle. (Little did I know that waking up with a stiff neck is a staple of 30-something, but I digress.) I shook it off, went to my 8 am statistics class (because I’m a masochist) and kept on keepin’ on.

As the second semester of my freshman year carried on, the pain didn’t go anywhere. In fact, it got worse. And worse. And within a few weeks, I found numb places on my arm. Did I mention the pain got worse?

Fortunately, this was all in my left arm. I’m right handed, so I just tried to use my left arm even less, and I kept with the program. Full-time student. Almost-full-time worker. Absolutely full-time social life.

It started getting real when I lost mobility. At this point, I began to remember the weird thing that happened to me when I was 7 and my arm hurt a lot and I wore a cast for a day or two and that made it way worse and I couldn’t use my hand or arm for about 3 months, and then it all got better and I rarely thought about it again.

As the numbness progressed into my left hand and I struggled to put socks on and button my shirts, I was thinking about that incident a whole lot. It’s hard to describe the sensation, it really is. It’s not quite like when your hand falls asleep, though similar.

A friend asked what was going on, and I said to imagine sticking your hands in ice water for about 10 minutes, putting a rubber band around your fingers, and then trying to button up your shirt. He actually tried it, and immediately texted me something like, “Oh man, I’m so sorry. That was awful.” Keep in mind, this was back when you still had to pay for each text so the words meant a lot.

I had begun to lose the function of my hand as the nerve endings that fired the muscles died. In addition to lack of sensation, my motor skills were being systematically wiped out.

My job was accommodating: they moved me to a position that I could do with one hand and I only messed up a few orders here and there. At least, that’s how I’m choosing to remember it.

Aside from the pain, I was managing pretty well.

The pain though.

If you’ve ever suffered nerve pain or nerve damage, you know exactly what I mean.

It’s fire and lightning and razor blades all at once. There’s a good mental image for you: imagine a flaming razor blade made of pure lightning that traces each and every nerve from end to end with meticulous detail. This zealous little razor blade doesn’t stop at just one pass though—no, it must explore each and every conduit as many times as it can. And just as quickly as it came, it’ll recede into the shadows, just waiting for another inopportune moment to torture and torment.

Yeah, it’s about like that.

Now we’ll throw a few other wrenches into your daily life: as your muscles degenerate, they ache and ache. Amyotrophy (which is what it’s called when muscles atrophy from nerve damage) is a slow and painful death for your muscles as they no longer receive the necessary impulses from your brain to do their thing. Side note, if the intricate workings of kinesiology aren’t a beautiful and detailed signature of a Creator, I don’t know what is.

Anyway, as the muscles literally waste away from lack of instruction and leadership from your brain (there’s a sermon illustration there) they ache and they hurt and it’s a dull roar that undertones the nerve pain mentioned above.

As if that isn’t enough for you, there’s a third facet of this stupid thing. Fun fact about bodies: we always think our bones are the main load-bearing structures in our body and they provide a role in that for sure, but the biggest powerhouses are our muscular system. The bones just provide a stable place for the muscles to do the work. If something happens to your muscles, your bones lose their support system. And that doesn’t feel great either. It’s a whole different type of pain. I went through 18 years of life before I even knew there were different types of pain. Turns out there are, and I learned all about them the hard way.

One particular night, right after Spring Break, I’d been up writhing in pain for hours, not sleeping a wink and keeping my roommate wide awake. He’d just moved back into the dorm a week or two prior and here I was, acting like a maniac and whimpering like a dog having a bad dream. He knew I was hurting a lot and why. My doctors at the time weren’t interested in giving me any more pain meds (invisible disabilities are awesome like that) so all I had was handfuls of Advil and Tylenol to go on. My roommate suggested a “street pharmacy” and I was pretty close to taking him up on it. He had connections and I could’ve had something within the hour.

I elected to go the route of integrity and drove up to the ER for help. I sat in that empty ER waiting room for six hours, rocking in my chair in a sweating, moaning fit of blinding pain before they finally brought me back to a room, a doctor gave me a lecture about how I’m too young to be addicted to pills and how it’s not worth it. Pretty sure he gave me a half-strength Norco and a sugar pill and sent me on my way.

What caused so much pain on this fitful night? Pain in my other arm—my right arm was beginning to go.

A few days later, my parents and I decided I should quit school and move up to Tulsa where they had moved. The decision proved to be the right one, as a few weeks later, my arms were completely incapacitated. Within a month, I had no feeling and no movement in either of my arms.

It was one of the most humiliating experiences imaginable. An 18-19 year old college student with what seemed to be a thriving life, suddenly helpless as an infant. In fact, my kids were all pretty much more useful by 3 or 4 months than I was in the summer of 2008. I thought I had my trajectory all figured out. But God had different plans.

I wish I could say that I always had that perspective. While my core belief in God never wavered, as far as I can remember, my trust in Him absolutely did.

It was hard for me to trust that He was good. I didn’t want to trust His plan if it led to this. There were plenty of moments of crying out “why?” through teary eyes.

I wanted to want to trust His faithfulness. But in those moments, I was unhealthy not only physically, but spiritually and mentally as well. On some deep intellectual level, I knew God has a plan and always has a plan and it’s better than mine. But when you’re in the shadowy valley, All you can see are shadows and insurmountable peaks on all sides. You can’t bring yourself to care if there’s a promised land over there—you don’t even know if you can climb the mountain yet.

Is that a dark image? Absolutely.

Depression and disability take you to a dark place. Here at A Frank Voice, our name isn’t just because my last name is Frank. We want to have candid and real discussions about how difficult life can be, in all its rawness and reality. you’ve seen that consistent vision from us.

The next few weeks will feature posts about invisible disabilities, chronic pain, and what faith looks like when the challenges are truly blinding. You’ll get to hear more of my story, as well as stories from others who have been through these moments. You’ll see that it’s not always, “Well fiddlesticks, at least I have hope!”

My goal is to illustrate the reality of what it means to not look sick, but feel terrible on the inside. How do you minister to someone who looks fine? How do you serve and love when it’s easy to forget there’s anything wrong at all.

If you struggle with an invisible disability or chronic pain, how do you find faith in the dull, throbbing, and hopeless moments?

I don’t claim to have all the answers, but maybe we can get closer together.