The TV plays in the background. My friend says something I don’t understand. The words come out in a jumbled mess, too quiet for my struggling ears to understand. I turned my head. Oops. A little too fast.  My vision tunneled to her face and my heart lodged itself in my throat. The blood flow turns to  a standstill, not enough energy to push the blood to my head, so my eyes get lost in the darkness focusing on where she was  two seconds ago. My heart picks up the pace in a frantic attempt to keep up with the demand. I tried to swallow, take a deep breath, but it won’t come. My lungs won’t expand. It sends me into panic mode as my breath catches before I can desperately suck air in. Arching my back I try to loosen the bonds as I pull in once more. Laying my head back on the chair as I close my eyes, the air comes in slowly as I fight the pain. My heart starts to fight the lack of oxygen by pounding faster and faster. The chair rocks and tilts without moving make me pull myself up quickly. Too quickly. My vision darkens again. My hands reach for my head as my feet and the chair spin all over again. It’s worse the second time around. My hands start to shake. I urge my body to breathe, then breathe again.

Twenty minutes later and the feelings of panic are gone and I can focus on the movie once again. This was the third time this had happened this week and it was only Sunday. I knew my heart problem had somehow gotten out of control even though  the medication I was on should have prevented this. That night was my breaking point. There was no more “maybe if it gets worse I might tell my parents”. I was going to have to go see a doctor and get this fixed. My medication was definitely not working anymore. That was very clear. What was also clear was that living without the medication that moderated the effects of my heart condition was also not possible.

*

I discovered my heart problem in my sophomore year in high school even though I had been living with it my entire life.  I was in school when I discovered that anytime I tried to move that my heart beat faster and faster while I was forced to walk slower and slower because I felt like I was about to collapse to the floor. My heart beat furiously against my ribs. I got nervous and agitated. I barely slept that night. My chest tightened up, making it hard to breathe. After two days of nonstop pounding I landed myself in the hospital for four days.

I got back from the hospital on a Friday and by Monday morning I did not feel any better than I had when I had went into the hospital, but not going to school was not an option in my mind. I could barely walk, but I had to go to school. Later that would change. It took a few days of trying to struggle through classes. I was so week and exhausted while I waited for the medication to kick in and fix everything, except they didn’t. It took me a week before I just wanted to give up. Nothing had changed, even though I was told it would.

*

Getting ready in the morning became an almost impossible task. After my alarm woke me up I would blindly reach over to my nightstand and swallow the pills before I would sit up in my bed. The room would spin and my head leaned back against the headboard as the dizziness overwhelmed me. I was forced to close my eyes for a few seconds before I could swing my feet to the floor. Standing up was followed by another wave of dizziness, followed by my room dimming as my heart pounded faster. I found myself leaning against the bookshelf for support before I could feel safe taking a few steps muttering swear words as I bowed my head again as the room spun.

Previously I had started each morning with a shower, but that quickly turned into a bath when I discovered that by the time I made it from my room to the bathroom and got undressed I was too weak and unsteady on my feet for that to be a good idea.

 After a quick bath I would slowly make my way back to my room, making a pit stop on my bed, laying down and pulling the blankets over me while I laid there for a few minutes, staring at my clothes deciding what to wear for the day. It was more for a lack of energy than indecision that would land me back in my bed each morning.

 I would get dressed, again a very slow process, that usually involved a lot of dizziness and leaning against the wall or my dresser as I got my clothes on. All the while my heart rate had sped past 150 beats per minute. Normally in these circumstances it should be around 60. This discrepancy left me tired and weak to the point that when I was done getting dressed I would have to lay back down on my bed before walking upstairs. Once upstairs I would collapse on the couch, get breakfast, collapse back on the couch and hopefully have enough time to lay down again before having to get up to go out the door. After two weeks of existing like this I was utterly miserable. I was so far behind in my classes and I could barely keep up with them, let alone catch up with all of the work I missed.

It was my sophomore year in high school when losing time and forgetting things took on whole new meanings. Not once. Not twice, but entire days, entire weeks, entire months of time that are gone, forgotten or barely remembered. I was left with fragments of time, bits and pieces that don’t always make sense. I have memories of conversations between people that I am not sure even happened because back then I felt too stupid and embarrassed to ask if they did or not. Especially because I tried my hardest to pretend that nothing was wrong and that I was fine. It didn’t work, but I tried anyway. I never fooled anyone, but I tried.

Medication dosages were doubled, then doubled again, new medications were added and I still had trouble walking around without my heart rate spiking to dangerous levels. It took almost three months before my heart rate and blood pressure calmed down to a somewhat normal range. 

I still couldn’t focus well or remember much of anything. I pushed through, or at least I tried. I could get around a lot easier. I didn’t have to lay down and rest so often, but I was still miserable most of the time, but at least I could function. That’s what I told myself anyway. The truth was that I was hopelessly depressed. It had slowly seeped into my life while I waited for the medication to work, so that I could return to my life. But it never happened. I slowly pulled away and retreated into a fog. 

In my freshman year of college, I discovered that the depression that I had been dealing with for the past two years was the result of the beta blocker I had been taking since I was sixteen. All beta blockers work by decreasing in the norepinephrine system in the brain to lower the heart rate.  Depression is caused by deficits in the norepinephrine and dopamine systems in the brain. At this point in my life, I had lost all faith and trust in doctors, so I decreased the dosage of the beta blocker on my own and discovered that by doing this I alleviated my own depression and it was still enough to keep my heart problem in check, most of the time.

*

With the failure of my medication that kept my heart problem under control, in the fall of my senior year of college, it took a week before coming close to passing out became a common occurrence.  At first I found in kind of amusing. Especially when it made me high from the lack of blood flow to my brain. After a while it’s wasn’t so fun anymore.

I could be sitting at the lunch table, a desk in class, or in my bed. It didn’t matter where I was when I stood up. But when I did the world would dim and darken to blackness. I had to wait for everything to come back in focus as I dropped  my head. Leaving my hand firmly on the chair, table, or whatever hard surface I could find in the darkness, just in case. As the lightheadedness would fade I would be able to shake it off as the room around me reappears and I can pick up where I left off. Slowly at first, just in case my blood pressure drops again as my heart speeds faster and faster.

I’ve dealt with the blackouts all my life. As a kid I didn’t know what it was and didn’t think much of it. I just paused for a few seconds, swayed slightly, before my vision returned and I continued walking as if nothing happened. Occasionally I would have a bad day and there would be several of them, but for the most part it didn’t happen very often until October of my senior year of college when I started having multiple blackouts in a single day, every day for weeks.

I started keeping a tally in my head each day of how many times my blood pressure would drop to the point where I couldn’t see, but the problem was that I kept forgetting what number I was on. So I could never be sure of how many times in any given day that it actually happened.

Sleeping became a foreign concept. As time went on I stopped trying. I know its college and as students it’s expected that we don’t sleep, but this was different. Getting six hours of sleep was a rare occasion and a good one at that. For almost two months I rarely got more than four hours of sleep each night. Not only that, but those hours of sleep were rarely continuous. When I didn’t crash after the first night, or the second, or the rest of that week I stopped going to bed at a reasonable hour.

Over fall break I found myself in another doctors office with a man who claimed he didn’t know everything about my heart condition. But what he did know and what he did tell me was not promising. According to him, my heart condition is notoriously hard to treat and almost impossible to cure. He hoped that he could improve my level of functioning by about 60%. He picked a new medication that had a very low likelihood of making me depressed and sent me on my way with the assumption that we would have increase the dosage or add other medications to make it work better.

Going on or off of medication always makes me feel so much better. But it is only a matter of time before my heart problem decides to be uncooperative. And lately that time before my heart starts acting up has gotten much shorter than what it was in high school. Now it is only brief two or three days of clarity and productivity before things all go to hell again.

It has become apparent that my body is very sensitive to medications and I have been known to have extreme reactions to almost all of the medications I have been put on.  It is like a very unbalanced teeter totter. With my heart medication I seem to bounce between having no control over my heart problem or being extremely depressed. Neither of the two options allows for any sort of productivity, but every time my doctor decides to change something it always appears to work for the first week or two. It allows me to be cautiously optimistic before the situation flips back to one of the two extremes.

A few weeks ago when I was having one of those rare clear headed days I found myself looking back through notebooks remembering taking notes, but not remembering the context of any of the notes. If they weren’t written in my handwriting I would question if I had even written them. I know I went to class, but what we talked about could only be deciphered through my minimal notes and the random thoughts jotted on random pages throughout all of my notebooks. I found entire pages filled with stars, scribbles or an intricate pattern composed entirely of circles. Pages and pages of poetry that will never see the light of day and one page with only two words: “I’m scared.”

It was two weeks after I had started the new medication and I found myself all alone in my room when the fear crept in. My friends were all gone for the night. I wouldn’t see them until late the next day. I just couldn’t do it anymore. As long as I kept myself busy it was fine, but now I was all alone in my room. It looked like these new meds weren’t working. What if I was stuck? What if no medication worked for me without pushing me into a depression? What was I supposed to do? I couldn’t get my homework done. It was only a matter of time before I couldn’t stand up without ending up on the floor. I needed to function. I needed normalcy. I didn’t have either one and I had no idea when or even if that was a possibility anymore.

This will never work. No medication will ever work. This is how you will spend the rest of your life. Doomed to never be able to function like a normal human being again. Curse those doctors who said this would work. That this new medication wouldn’t make you depressed even though it clearly has. That hope dashed. Those couple of good days where everything worked. It all felt right. It all felt normal. I longed for those pseudo normal days. Getting things done and having fun now seemed so far away even though it can’t have been more than two days ago.    

I needed a distraction and if that didn’t work I needed to sleep. I found my bottle of sleeping pills, swallowed two and found a book. I hadn’t read in weeks, but I needed to try. Needed something to do. I found myself without my glasses, curled on the couch of the lounge covered in my tie die blanket. As I turned the pages by brain began to slow, to calm down and focus on the characters and their problems, instead of my own. The sleeping pills started to take effect and I knew either I was going to fall asleep in the lounge or I needed to relocate back to my room. I decided that my room was the better of the two options.

Once back in my room the thought possessed me that I needed to sleep under a tent. I don’t know if it was the pills, or what, but build a tent I did. My bed was high enough that I could get under it comfortably, so for the next half hour I took all of the blankets, towels and random pieces of clothing that I could find to drape over the bed frame, to completely enclose it in darkness. Once I was finished I turned out the light and crawled into my creation. By the time that I was done I didn’t want to read anymore. I cried for over an hour, not using any Kleenexes, but just letting the tears stream down my face onto the pillow before the pills or the exhaustion carried me off to sleep somewhere around 11 PM.  I didn’t wake up until after 11 then next morning. It was the first night in close to a month that I had slept more than four hours.

Waking up I knew that the new medication was not going to work. I also knew that the depression had set in harder and much faster than it ever had previously. I spent the rest of the day laying under my bed, surrounded by darkness, crying, unable to stop long enough to leave the safety of my tent to go get food, so I ate what food I had in my room.

I knew that there was a chance that I would never be able to get my heart problem under control again. I had three years where everything was good and now it wasn’t. Most people with my heart condition have a hard time going to school or work and most end up on disability because the condition is so debilitating that they can’t hold down a job. Laying under my tent I was gripped with the thought that it would never get better and this is what my life would be like. Bouncing between incapacitating bouts of depression or dealing with a fluctuating heart rate and blood pressure. And knowing that it was not what I wanted to be. Not who I wanted to be defined by as a person.

That’s not saying that the new medication didn’t work. It did. For the first time in almost two months my heart problem was under control. My heart wasn’t beating erratically. My blood pressure wasn’t dropping to dangerous levels at any given moment, but if I was going to be forced to be depressed I knew that the benefits of the medication did not outweigh the cost. So I laid in my homemade blanket tent waiting for the medication causing these feeling to ease its way out of my blood stream. 

*

There were times when all I wished for was to be normal, to not have to struggle as hard as I do. There are people in my life who encouraged me and helped me through, but I didn’t want that. I didn’t want to have to fall back on someone else to pick me back up again.

So in a way everything is the same. I will always have my struggles. I will have my good days. I will have my bad days. I will try and push through even when I can’t, but in the end this is who I am. Everyone has their own struggles. It’s all exercises in desperation, trying to change things that you can’t. But in the end, everything is the same.