Trigger Warning: Suicide, illness
Growing up, I was in the hospital A LOT. I had severe respiratory illnesses all throughout my childhood multiple times a year, and every time I would get sick, my parents would be by my side as often as they could be. I was pretty much never alone in the hospital and I remember more than once my mom arguing with the hospital administration over visiting hours. As a child, I was very grateful for this because I was in an unfamiliar place and I was sick. All I wanted was my mom and the comfort that she could bring. Once I became a teenager, I realized how much it took from my parents and the people around me whenever I was sick. I was high maintenance. I wasn’t a super-kid who never got scared and was completely independent, nor would anyone have been when they were my age. But most kids don’t have to ask for help as much as I did and most parents were not as physically and emotionally taxed as mine.
Luckily, when I was 11, my repeated illnesses abruptly stopped. We had theories as to why—better maintenance of respiratory issues and my own ability to vocalize when I felt like I started getting symptoms—but we never knew for sure. Then, my string of luck ran out. In the summer of 2014, when I was 25, I got really sick basically overnight. I had a sore throat one day and the next morning I had a cough and couldn’t sit up straight. By the afternoon, I had a 103 degree temperature. I was rushed to the ICU and all the memories that I had buried of being hospitalized came to the surface. It was the worst I had ever felt in my entire life, inside and out. I was jumping when machinery around me would beep and my heart rate didn’t go below about 100 beats per minute pretty much the entire time I was in the hospital. I ended up having strep throat, strep pneumonia, and severe sepsis which was due to, from my understanding, strep bacteria getting into my throat, then my lungs, then my bloodstream. So my body was pretty much under attack from all sides.
One of the most difficult things about this illness was that I, as a pseudo-independent adult, had to depend on my family in a way that I always associated with being a child. The weekend that I was in the hospital was the weekend of my brother’s high school graduation and I felt horrible for not being a good sister and sucking it up enough to go. I felt horrible because my parents were having to neglect their work lives to spend time with me. I felt horrible because my ex-boyfriend (boyfriend at the time) would not come visit me in the hospital. And this is on top of my body basically trying to kill me. I was in pain everywhere, I was exhausted, I was afraid to fall asleep for fear of not waking up, and I could not breathe very well on my own. My anxiety level was so high that I was obsessing about air getting into my IV line and giving me an air embolism and I literally could not stop thinking about it, even when the nurse would show me that there was no air in the line.
So yeah, it was a pretty bad few days.
Another one of the super fun aspects of this hospital visit was that I had to do breathing treatments multiple times during the night so I couldn’t get a full night’s sleep. However, the respiratory therapist was really nice and she could understand me even if I was only whispering, which was all I could do sometimes (in hindsight, I’m sure she was used to communicating with people with poor respiratory issues). She had a lovely air about her and I loved that she treated me like a human being and not just like a slab of meat. That was the one I upside of my hospital trip. I really liked the CNAs, nurses, and other personnel that came in and out of my room. They were the bright spots.
One thing that I didn’t share with them, or with my parents, was that I was honestly expecting to die in that hospital and if I didn’t, I was planning on dying when I got home. I was just too tired to keep going. I knew they were worried about me, as was my brother. My getting that sick that quickly was something none of us were accustomed to and between that and the fact that it had been so long since I was really sick, all bets were off on if, when, and how I was going to heal. More importantly, I was disappointed in my own body for the first time in a long time for not being able to stay healthy. It felt like I lost a war I didn’t know I was still fighting. I didn’t even know where I got strep in the first place, so I settled on the fact that God or the universe or something else was punishing me for something. So I punished myself for good measure.
It was really hard to sleep at night because a lot of the lights had to stay on and I couldn’t breathe easily anyway, so falling asleep had to be done at a measured pace so that I wouldn’t konk out and stop breathing (yes, I know it probably doesn’t work that way but I wasn’t exactly thinking logically at the time). My mom spent the nights with me when I was in the hospital, just in case I needed anything and to make sure that nothing crazy happened with my health in the middle of the night. I remember on about the third night, I just laid there for hours looking at the ceiling until my tired eyes eventually drifted over to my mom sleeping. I remember thinking that I wasn’t sure if I had ever actually watched my mom sleep. I’m sure she watched me at some point. I was thinking about what it must have been like to her, raising a daughter like me. It couldn’t have been easy. I thought that maybe if I was dead, she could finally stop worrying.
The respiratory therapist came in right as I was starting to drift off and saw that I had been crying. She came over quietly, held my hand, and wiped my eyes. I don’t know how she did it but she connected all the dots about how I’d been acting and it was like she could read my mind. She told me that everything was going to be ok and that my mom was there because she loved me, not because she had to be. I barely got a sentence out because everything she said made me cry, but it was a different kind of crying than I had been doing. I felt like she understood me and took the time to absorb some of my emotions that had been out of control since I was admitted.
Believe it or not, after that night I started to get better. I know it wasn’t magic and I’m sure there’s a logical explanation but I think my motivation to get better had something to do with it. Now, that’s not to say that modern medicine is unimportant. In fact, the opposite. If I had only gone to the hospital a few hours later than I did, I likely would have died. Medical intervention without a doubt saved my life. But I think that respiratory therapist saved my mind. That night was the last night she was working, so I never saw her again to thank her, and I never knew her name.
I know I’m not the only person with a disability to feel like a burden to friends and family. Some of this has to do with the way we’ve been conditioned to act. People with disabilities are supposed to be constantly grateful for the hand we’ve been dealt and are supposed to be even more grateful for the people around us who are trying to help. But we are all human. Sometimes, the gratitude just isn’t there. I think another thing that contributes to the misconception of feeling like a burden is that, for most of my needs for example, I say “thank you” when someone helps me. This might seem like a small thing but when you have to constantly be polite and remember your pleases and thank yous, it feels like there is an imbalance of power and goodwill in a relationship. It can become a relationship where one side gives service and the other accepts it, rather than a healthy, reciprocal relationship. But all relationships must be reciprocal or they couldn’t be maintained. The things I offer in relationships are of equal value to the physical help I ask for, but are mostly intangible. I listen. I emotionally support. I give advice. All of these things are important in relationships but it feels imbalanced because I’m socialized to say “thank you” when someone provides me physical help but we may not all be socialized to say thank you for advice or listening.
These imbalances (whether perceived or real) can be the death of relationships. Admittedly, it took me a long time to learn that I had value that I could bring to my personal relationships. The idea that people actually want to be friends with me is still kind of surprising, to be honest. But I think that ugly voice in the back of my mind that tells me I’m a burden in my friendships is the same voice that told me I was going to die in the hospital. It’s the voice of an asshole that I don’t have to listen to. It helped me to separate that voice from my regular inner voice. It’s like one of those self-esteem lessons they teach you when you’re younger: If you wouldn’t say this out loud to a friend, don’t say it to yourself. That’s been a hard lesson to apply to my life, but a valuable one.
I hope this blog post is valuable to people reading it. Whether you have a disability or not, I think that being kind to yourself and not viewing your own life as a burden is an important lesson for everyone to learn. Because whether you need help doing everything or you are completely independent, the thought that you are a burden to friends and family is likely not a logical one. But self confidence is hard. I get that. Especially when society sends signals that you need “too much” help. That’s a different problem to solve. I encourage clear communication and relationships because, aside from being valuable in every other way, it can help clarify expectations and assumptions, which is especially important when someone has a disability. I should have a vocalized that I felt like a burden earlier in my hospital stay. It likely would have made for a lot less stress and depression. But that is a lesson learned.
Learning to stop apologizing for existing was one of the hardest things I’ve ever had to do in my life. I’m sure part of it was my depression (probably a big part), but I don’t think that feeling like a burden is strictly a symptom of depression. Sometimes, media messages hit us hard, regardless of our disability or lack thereof. “You’re not good enough if…” is I think a pretty common tactic in advertising in particular, which we are inundated with in America. It’s my hope for all of us is that we can stop holding ourselves up to impossible standards and start living and loving each other with our full selves.