I was 13 the First Time I Had to Learn to be Alone

Until then I had lived with my family and been around people always. I was almost never by myself. When I ended up in the hospital, I was suddenly alone a lot. Sure, I had my parents taking shifts to spend time with me, my visitors, and my nurses. But when my parents weren’t there, I was alone. I always wanted them to stay longer. Dad had the evening shift while my mom went home to cook me food to try to help get my weight up. He would stay just after 9 p.m. when visiting hours ended to watch TV with me in the family room. We were quiet and didn’t disrupt anyone, so I got to keep him around a bit longer. At 9:30 he’d head home too, and I would be alone for at least 12 more hours until visiting hours started the next day. I would stay up to watch another movie or a couple more TV shows. This went on for five months. I’d stay in my room by myself. The nurse would check in a couple of times. I’d call home at least once. And eventually I’d dim the light to try to sleep.

Sleeping wasn’t easy. I was never that good at it. It was even harder with the machine hanging from my stomach. If I slept on my side, which I normally do, it would hang down in a painful way. Once I had it propped up enough so it wouldn’t hang, the loud tack tack tack noise it made would keep me up. I pretty much only slept when I couldn’t stay awake any longer. It seemed like only minutes before it was time for the morning blood draw. Every morning between 5 a.m. and 6 a.m. someone would come in to draw blood. They got to know me well enough that some of them would try not to disturb me too much. As long as they knew that I knew what was happening, they’d let me close my eyes again. But that was only the beginning. Then came the breakfast tray bright and early around 7. Once that was over, I’d get a bit more sleep. My morning nurse’s shift started at 7 and I’m pretty sure they’d make sure I was the last one on their list for rounds just so I could sleep a bit longer.

I didn’t like mornings, not only because they were hectic but because I was alone for a long time. The hospital woke up far before visiting hours would start. So, there was always a chance something would happen before my mom got there. I was always a nervous wreck in the morning waiting for something to go down. One day they wanted to draw blood but refused to use my pick line. Another day I got a nurse that wanted to do things differently. I was always afraid a visitor would show up unannounced before my mom had the chance to get there. There was always something scary that could happen.

Flash forward to this week. I had to go to the hospital to do my annual medical tests on my own for the first time in 20 years. Being alone throughout the pandemic is one thing. It’s scary in its own way. I see my family way less than when they’d visit me 20 years ago. I have to constantly take care of myself, so I don’t drop mentally. I’ve been working out a lot, eating healthy, trying to be creative as much as possible, and getting outside. I don’t like being alone. I’m quiet and shy but I love being around people. It’s been hard. But getting those tests done alone this week was harder. I don’t know if I should say this, but the weeks leading up to my tests I feel like I’m dying. It’s not on purpose. I feel like I have every possible negative heart symptom a person could have. It’s become obvious to me that it has something to do with being stressed about the upcoming tests. I don’t sleep. I can barely function. My heart feels like it’s flip flopping all over the place. Phantom chest pains become a thing. I’ll try a workout and huff and puff as if I had just climbed Everest. Everything sucks for weeks, and I have to try not to screw up everything I do. Somehow, this year didn’t seem so bad. I was ready. I still had all the issues I just mentioned, but instead of weeks, it was only the one leading up to the tests.

My mom picked me up at my place to drop me off at the place. The place. That’s what I always called it. Normally someone would come with me but not this year. Covid wouldn’t allow it. Just turning onto the street the place is on had my heart flip flopping around (not really, don’t worry). I don’t like that street. I don’t like that place. There’s this little voice screaming in my head, “what if they don’t let you leave this time.” We’re at the doorway. It’s all brand new. I don’t like it. I don’t like that it’s all new and different. It’s hard to heal when you can’t go back.

I walk in and it’s like nothing I’ve experienced before. They’ve greatly upped the covid precautions since I went for blood tests in June. A guy opens the door for me which I enjoy a little too much. He then leads me to a number on the floor to stand on while he asks me questions. I’m overstimulated by the bright lights and noise and PPE floating around the room. There are people that opted not to do as they were asked and stood not at all distanced from each other. My “what if they don’t let you leave” fear turns into “what if any of these people lied during the screening and what if the screening isn’t good enough and should I not have sat in this chair even though they asked me to.” I stifle that voice and wait for my number to be called, a new part of the process. I had to trust I was going to be OK. So, I did.

I had five tests to do. Three are walk-ins and the others are booked. I knew exactly how to efficiently do the first three in time for my first booked test. I got there early just so I could. Being anywhere early is a big deal for me. I went up, grabbed another number, and waited in the designated and distanced seat. An hour goes by. “Number 73?” “That’s me!” “Are you seeing a doctor today?” “No.” I knew the routine; I’d seen it five times before it was my turn. “I’ll need your health card to look you up.” He walked off with my health card. He’s only a few minutes before he comes back. I’m rearing to go. Everything about me has been planned for utmost efficiency; what I’m carrying, what I’m wearing, when I left, everything. This is the only time I plan anything. He comes back. “You’re in the wrong place.” “No.” The word came out before a thought could enter my mind. “Respectfully sir, that’s impossible,” I wanted to say. I don’t exactly remember what I said but I started asking questions and he got impatient. He claimed the requisition in the computer was too old. So, I gave up.

From there, I got up, flew over to the next station picked a number and did something I never do. I had had no food or water for 12 hours but there is just enough there for a fire to flare up inside of me. I called the transplant clinic to complain. I was worried that my three walk-in tests were not in the computer. I was worried I’d have to come back. I was worried I had been there for 1.5 hours already for nothing. Do they not understand how hard I work on coming here in the first place? Then I realized I could actually check the computer myself. Patients have access to everything now. I never liked this feature until now. After four unsuccessful stressed-out password attempts, I finally got in. The test was there. My phone rings at the same time. The call was coming from inside the hospital. The tests were all there. It was there all along. The guy screwed up. I decided to make a deal with the transplant receptionist on the phone saying I would do it when I see the doctor in two weeks. It’s a quick test and they print off the results right away. OK, on to the next one. Everything is going to be OK.

And it was. Except that I was freezing all day. Hospital gowns are not warm. Every person I encountered offered me a warm blanket. “No thanks, I’m OK” and they’d get one anyway. Eventually I stopped saying no and started saying, “I’d really like that.” Growth, I think. Finally, it was time for the big test. The real scary one. They all suck but this one really sucks. It requires an IV and it’s long and painful. I recognized the people from last time. The lady that held my hand, the IV guy that I’ll never like purely because he’s the IV guy. It was somewhat comforting. Unfortunately, this year IV guy tried to prove me wrong about my left arm veins being useless. “There’s one there, it’s small but it’s there.” Oh no. He tried to assure me with his overconfidence. He failed. He opted to use a smaller needle in my right arm. He used the vein I suggested in the first place. I’ll never understand why they do this. At least I got another warm blanket.

I finally finished the test. It was bad but somehow not as bad as usual. When they were stressing my heart with medication, I thought I was going to throw up. I accidentally distracted myself with the problematic logistics of throwing up in the PET scan machine. “Where would I throw up? What would I throw up, I haven’t eaten for like 16 hours? Would it break the machine? They’d have to like to shut down. All those poor people with IVs in already waiting. Wait, am I dying?” and the scariest of all “Will I have to redo this test”? That was enough to stop me. Not that I would have really thrown up. It was all in my head just like the flip flops in my chest. Finally, the test ended and that was it. I got to leave. Hours of waiting and then boom, out the door I go. They not only let me leave. They wanted me to. They never want to keep anyone. I just still get scared sometimes. Hey, I did it. I did it all by myself.

My dad pulled up as I was walking out. He had the second shift just like long ago. I was so happy but tried not to react. I never want people to think I’m happy about being there or that I’m OK with being there. I was just happy to go home and order my pancakes. “Where to first?” my dad said. “I’d like to go home,” I said. Followed by “Ooh can we go to Starbucks?” “We can go wherever you want,” he said. We then pulled away from the place for another year and headed home (via Starbucks).

Normally I’d still feel those flip flops in my chest for another couple of weeks until I see the doctor. With the new computer system, though it has its flaws, I get my results as they are entered. I started getting them while I was still there. I just got the last results from the big test. Turns out I’m not dying. I mostly knew that. In fact, compared to February 14, 2020, there has been improvement. All the work I had done to take care of myself paid off. After 20 years I’m even healthier than I was. As I read the results, I thought of the heart in my chest. I promised Her I’d take care of us. Since the pandemic hit, I haven’t always known if I’d be able to. Not just because of the deadly new disease that’s even deadlier for transplant patients that I now have to avoid, but because I was worried about getting too depressed being alone and that I would fail at taking care of us. But I worked really hard, and I did it. I did it by myself. Though, I will never truly be alone. Thinking of Her, the little girl I never met, and our healthy heart now beating totally normally in my chest, all I can think is “Happy anniversary little one.”

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