Thursday, February 16, 2017

What It's Like to be a Stroke Survivor

Looking back over my feed, I've noticed that today is the first time I'll have posted in over a week.

The past week has been pretty crazy in my home. My daughter sprained her ankle last week, only to later develop bronchitis. One of my sons has both an eye infection and influenza.

As a result, I've been home with both kids the past two days. Because they've been in bed resting, that means that I've had a lot of time to sit and think.

And if you know me at all, you know that's probably not a good thing.

You see, certain things trigger my memories. Certain memories that I'd like to forget. It's something I've been really working on lately, but not something that is easy to heal from.

Many people seem to think that I use this life-changing event as a crutch, that I perpetuate it, or make it a bigger deal than it needs to be. That I see myself as a victim and like to almost brag about it. And for awhile, I felt that way too, which meant that I didn't like to discuss it. I didn't want it to define me.

But recently, after some personal struggles, I did some research and found the Joe Nierko Foundation and have joined a support group on Facebook only to realize that I'm not an oddball with the quirks and psychological things I'm dealing with, but rather in the norm.

Yes, I shouldn't let this define me, but it is a part of me, and I'm convinced that only by acknowledging it, will I truly move through and get over it.

So what does this tangent have anything to do with sitting at home with my kids the past three days?
You see, the last time I took time off work and was sitting at home by myself, I was out of work for three months.

On September 1, 2015, at around 10:40 in the morning, I was teaching my second block World History class. Class had just started, and I was sitting in my desk chair, taking attendance on the computer. My students were working on their bell ringer assignment. I stood up to address the class, and felt something in the back of my head. It felt as though someone flicked me on the back left side of my head, just below my left ear. It was a dull pain, so I reached up and put pressure on it. Almost immediately, my vision began to flicker and swim and I became dizzy. I asked a student to run down the hall to the assistant principal's office, as I sat back down. The kids stared at me, but I calmly told them to keep working, that I was fine. I called down to the front office on my phone, asking them to send a first responder up to my room, because I knew something was not quite right. Within a few minutes, the dull pain became an intense pressure, as though the left side of my head was in a vice. I slowly began to lose the sense of hearing in my left ear. I sat down in my chair as one of my friends and coworkers came into my classroom. She crouched down in front of me and took my pulse. It took one look at my eyes for her to realize something was not right. She picked up my phone and called the front office, asking our secretary to call for EMS. After determining I was too dizzy to walk, I humorously scooted myself in my rolly desk chair into the hall as my kids silently watched. I assured them I'd be okay and encouraged them to keep working, that I would be back in a few minutes.

Little did I know I would not see them until after Thanksgiving.

Over the course of the next fifteen minutes, my coworker and I were joined in the hallway outside my classroom by three Assistant Principals, our School Resource Officer, our Dean of Students, and other  Social Studies department members. The elevator down the hall dinged and out poured a number of firefighters. They came to me, asking me if I knew what day it was, who the president was, what time it was, and what happened. I answered all the questions correctly, telling them that I thought maybe I'd had an aneurysm. It was then that it hit me. I quietly squeezed my friend's hand and told her I didn't want to die, that I didn't want to leave my wife and kids behind, that at 26, I was too young for this. She told me that I wasn't going to die and that I'd be okay. I quietly began to speak the name of Jesus over and over again.

One of the firefighters asked me to pull my hand away from the back of my head, and after a brief inspection, noticed it was red and a little swollen. Soon, the EMS showed up, piling out of the elevator, pulling a stretcher behind them. After some brief tests, such as taking my blood pressure, blood sugar, and looking in my eyes, they loaded me onto the stretcher and wheeled me down the hall to the elevator. I couldn't see much, as my vision continued to flicker back and forth like an old television stuck between channels. As we loaded into the elevator, I began to feel sick. The EMS pulled out a sickness bag and I began to retch into it, but fortunately/unfortunately, nothing came out.

As they loaded me into a waiting ambulance, they told me that a student on the first floor of the building was having an asthma attack, and as a result, they had to ensure he was okay before we left. I told them to do what they needed to do for the student. Ten minutes later, we were leaving school, sirens blaring, as we quickly drove down US-29 toward I-40 and to the hospital. I don't remember much about the ride, but what I do remember was cracking jokes with the EMS in the ambulance with me. At one point, he was flabbergasted by what my eyes were doing. I just thought it was my vision being wonky, but it turns out that my eyes were not acting normal. He requested my permission to tape my eyes on his phone so he could show the ER doctors what they were doing, and I assented. I made some lame joke as he taped my eyes, something akin to "See you soon, doc!" Turns out, the flickering of my eyes back and forth was called a nystagmus (look it up on YouTube...pretty weird and creepy stuff).

Upon arriving at the ER, they slapped a bracelet on me and admitted me, wheeling me into an empty room. Thankfully, there isn't much going on in a hospital on a Tuesday morning. After numerous tests, such as blood pressure, O2 levels, weight, height, and injecting me with an IV, the ER doctors and CNPs diagnosed me with vertigo. It was around this time that between my feet, I saw my wife enter the doorway. The pressure in my head had since subsided with another pop, but my eyes were still nystagmatizing (I just made that word up). The doctor didn't feel quite right about sending me home, and instead ordered a CT scan.

I really don't remember much about this scan at all, except being terrified. Was there something going on in my head?

After fifteen minutes, I was back in the ER room, where the doctor met me shortly thereafter.

It's never a good sign when the ER doctor comes in and sits down, leaning his head back against the wall. He explained that he'd want to do more tests to be absolutely sure, but he was pretty sure that I'd had a blood vessel explode in my brain.

Watching movies and television shows, they always show people getting bad medical news as zoning out or the doctor's details becoming white noise as they process the newest tragedy.

I simply said, "Huh. Okay." My wife gasped. Frankly, based on what I'd felt happen inside my noggin at 10:40, it didn't really surprise me.

After a few minutes of discussing details, he officially admitted me as a patient, and sent me up to the Neurological Intensive Care Unit. My wife and I spent the next hour or so watching Gilligan's Island on the television while hey got my room ready. Evidently the crew of the Minnow had gotten exposed to some atomic radiation and Gilligan had gotten super strength and was carrying the Skipper and large rocks and logs around the island. At least that's what I gathered with the one eye that wasn't bouncing around.

The rest of the afternoon was a lot of poking and prodding with needles and such after they stripped me of my dress clothes and tied me up in a white hospital gown with gray polka dots. I was hooked up to all sorts of blood pressure monitors and pulse meters and IV drips in a high tech hospital bed. I met a neurosurgeon (who I am convinced saved my life in the long run) and a neurologist (whom I haven't seen since). I met the nurses who would be taking care of me and would become friends over the next four days. And I met the robotic security camera up in the corner that would be spying on me when the doctors and nurses weren't in my room.

Because I'd had what would be diagnosed as a "hemorrhagic cerebellar stroke" (or a ruptured blood vessel in my cerebellum at the rear base of my brain), I was in the neuro ICU. The weird nystagmus was as a result of where the rupture was in my brain; the vessel had been obliterated (which is probably the second pop I felt), but the pressure of the blood was exerted on the optic nerve for my eyes, causing them to move by themselves and not work together in sync. Over the next few days, many of the nurses in the ward hung out with me, mainly because, I'm convinced, I was the youngest and most alert one in the unit. Many of the other patients were stroke victims and were older. I remember being woken up each night by the sounds of someone coding out or crash carts trying to bring someone back to life. I'm also convinced that at least one person died near me in the middle of one of the nights.

On day 2 of being in the Neuro ICU, my neurosurgeon ordered an MRI to be absolutely sure what was going on, confirming that I'd had a hemorrhagic stroke. But he wanted to be sure that it wasn't still bleeding, so he ordered an angiogram, which would be conducted on Thursday, day 3.

In the meantime, my wonderful wife had called my parents, who'd immediately gotten a flight from Michigan down to North Carolina the evening I'd been admitted to the hospital. They spent quite a bit of time with my wife and I up at the hospital over the course of those days, as well as helping out with my daughter and two sons in the evenings. My awesome daughter handled the entire situation quite well, coming up to visit with me one evening, as well as FaceTiming with my dirty and unshaven face.

Most of my late nights were spent alone, watching AdultSwim on the hospital TV. I was too scared to sleep, as I didn't know what would come of all this. Josh, one of the nurses in the ICU, who happened to be about my age, spent quite a bit of time in my room, assuring me that everything would be okay and walking me through the procedures of my MRI and angiogram. He also brought me numerous Diet Cokes over the course of those four days and unplugged me from all the machines so I could then...ahem...expel said Diet Cokes every few hours. He also regularly visited me to conduct cranial nerve exams, making me fight against him as he pushed and pulled my arms and feet and made me alternate touching his moving finger and nose.

The angiogram went was a procedure where the doctor fed a catheter in my arteries up into my brain, while I laid there conscious, to inject dye into my brain while looking at a live X-Ray to see if my blood vessels were still leaking or not. Everything went fine. I did, however, at one point feel the catheter in my neck, poking against the inside of my skin. Pretty freaky stuff.

After four days in the hospital, I was finally discharged on Friday. My wife picked me up and drove me home, where my parents were watching the boys and hanging out with my daughter. Over the next few days, I ended up with a walker due to my double vision. I also started physical therapy, working specifically on reteaching my body to coordinate walking with my vision and depth perception.

My awesome parents sat down with me a few days after coming back home. They had decided to lengthen their trip to help take care of me and the kids. My mom decided to stay an additional week and fly home a week later than my dad. It was decided that my wife's mother would come down to help out the following week. All of which I am eternally grateful for.

Over the course of the next few months, I spent a lot of time at home alone, recuperating. I worked a ton on Volume 2 of my book series, A Historical Tour of Walt Disney World. But I spent a lot of time thinking, too. Why me? Why did this happen to me? I was 26, not 66 or 76. I was later diagnosed with high blood pressure, which could have caused the blood vessel to burst. The cause of the high blood pressure was later linked to a diagnosis of stage 3 kidney disease. This fueled my anger and frustration. What did I do to deserve this? We had no family history of kidney disease or stroke. It wasn't fair. I was angry. No, I was livid.

I rejected God. I refused to go to church. And when I did go, I crossed my arms and blocked my heart from receiving anything He had for me. During worship time, I intentionally would change the words to curse God and reject the truths on the songs that God was a healer, that He was awesome, that He was worthy of my praise. I just couldn't accept that a loving God would allow something like this to happen to me, someone who tithed and went above and beyond in my giving, who had done all He had ever asked me to do (like moving 900 miles to a new place for a job or adopting three kids who are all awesome, by the way). Why would He treat me this way???

I still wrestle with a lot of these thoughts. I am not the person I was on August 31st, 2015. And I'm not sure I ever will be.

I still flash back to that day, to that moment, my life changed. I still see myself lying in the stretcher being wheeled into the underbelly of Moses Cone Hospital toward the MRI chamber. I still remember all the cranial nerve examinations I had to perform. I still remember the feeling of the pop in my head or the nystagmus I experienced. I still remember my wife leaving me to go home on the evening of September 1st, the first time in over five years of marriage we would ever spend a night apart.

And would I make it out of this? Will this come back? Will it happen again?

I find that I don't function the way that I used to, either. I could be at Walmart, checking out my groceries on a Saturday afternoon. All of a sudden, the noises of the checkout lanes, the lady across the way smacking her gum as she scans my groceries, one of my boys pulling my hand while making comments about the candy bars on the shelf, the greeter walking by pushing a row of carts, other guests standing in the checkout lines, and my brain becomes fried. I can't move. I can't think. I can't talk. I'm frozen. It's like I'm a PC whose hard drive becomes frozen and CTL+ALT+Delete doesn't work.

Or how about how it takes me extra time to process things, especially when there is a multi-step problem that needs to be solved? I'm not talking an extra 30 seconds, I'm talking an extra five minutes just to wrap my head around how to solve the problem.

Or how about when I'm still getting double vision when sitting or lying down or how I hardly have any balance anymore? Or I forget simple things or how time seems to simply stand still?

Life with PTSD is not easy (which my amazingly strong daughter has recently written about herself, inspiring me to write this post myself). Life as a stroke survivor is not easy. I still fight with my anger every day. It's like the little red character from Disney's Inside Out is at the controls of my mind.

I'm not asking for your pity or your sympathy, because frankly, unless you've been there, you really won't understand.

Empathy, though? An attempt to understand? Or to recognize that "people like me" who have been through something life-altering just need the extra time, extra support, and extra patience rather than simply assuming we are using our experience as a crutch.

As my amazing wife, who has saved my life and gave me a will to survive this, likes to say,

"Everyone has something. It might not be the same as your something, but everyone goes through something."

I'll get there. It'll just take time.

ps-Even if no one reads this or even makes it this far, that's okay. I didn't write it for anyone else...I wrote it to help myself heal. :)

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