Many people with chronic conditions spend years undiagnosed, searching for an answer. It's not uncommon to have false alarms-- for me, I've had several terminal diagnoses thrown at me over the years and it's really changed how feel about mortality.
I do think I have always been a bit different from the norm in that respect. I am autistic, and one of my earliest encounters with death was the passing of my great grandmother. I had visited her a few times, my mom would take us down to Oregon to see her family and help clean up. Hoarding runs in my family, and it was especially so at their home because my great grandmother had lived through the Great Depression. She saved everything, from bits of packaging string to drying out and reusing paper towels. My great grandmother was a woman of many talents-- she had one of the most gorgeous gardens I had ever seen and everyone in the family was clamoring for one of her cakes each time there was a wedding. As she aged, she lost the ability to keep a steady hand, but my most vivid image of her was when she sat in her chair by the TV cutting newspapers for collages.
When the call came that she had passed away, my family huddled together on the floor of my parents bedroom, holding each other and crying. I don't know why, but I was standing in the doorway, like an outsider, watching their grief but unable to touch it. I don't think I was any less close to my great grandmother than my sisters, but I processed her death much differently than other people. It almost didn't feel real, or maybe it was more real for me than for them. To this day I'm not sure.
A few years earlier, my sister and I had found a bird laying by the front door. It had smacked into the glass window of our home, and very likely broke its spine. I remember, at that age, tears flowed freely and I did my best to make the bird as comfortable as possible before my dad came up from the backyard to help bury it.
Why was I more affected by the death of an animal who was a stranger to me than the death of my own relative? I'm not sure. When I was young I had a cat named Kibakichi, which means Lucky Fang. She joined our family when I was in middle school and studying Japanese. After leaving for college, I left her at home because the dorms didn't accept pets. When I moved out, I didn't take her because I felt it would be unfair to rip her from her lifelong home for my own selfishness. We can't communicate exactly with cats, so any time they have to travel or experience permanent changes I'm sure that it's terrifying and confusing.
It's always phone calls that precipitate grieving, though not for any arcane reason-- it's simply that phones are the most accessible method of communication and most people feel it is too callous to give news of death over text. For Kibakichi it was several calls, because her health started deteriorating before she died. An infection in her teeth caused her to stop eating, and she did a bit better after having them removed but still passed within the year. At least she was more comfortable.
I felt hollow when she died, but I didn't cry. I accepted it as fact and thought I had moved on, but months later my mother called me and I asked how she was doing. I had forgotten that she had died. I think sometimes when feelings are too much for me, I disassociate from them. I don't think about it and then it isn't real for a while. I'm sure it's shocking to the people around me, and I suppose it is concerning myself to be so young while having such extreme discrepancies in my memories.
Perhaps something similar was happening when my great grandmother died. Maybe I can't handle the emotions, so instead the whole system just shuts down. I react very calmly, because the emotional part of my brain isn't fully functioning, and everything seems rational. However, I always felt immense guilt over how I handled death, and always had a sense that I should react more like everyone else. That death was this huge deal and I was deficient and callous.
In high school, I think I had a greater sense of fear regarding death. I started having heart palpitations and almost fainting at the library where I worked, so my mother took me to see a doctor. We almost never went, so it was a big deal. They first told me that I might have Marfan's Syndrom, a heart condition which can cause sudden death before the age of 30. I was extremely thin, weighing barely 100lbs at 5'7", and there's a particular gaunt look common to the condition. I ended up not having it-- it they diagnosed me with anxiety, but in actuality, I was suffering from PTSD after being sexually abused. My abuser had started asking around to find out where I worked and I started having panic attacks, but my parents didn't know about it at the time.
Being told I may only live another 15 years was extremely scary, and it caused me to have a lifelong caution for anything that affected my heart rate. I never drank coffee, ate ginseng, or used energy drinks despite severe chronic insomnia. Death was still a scary thing for me, and the idea that my life could be cut so short terrified me.
In the time before I was diagnosed with POTS, I was also investigated for heart defects. I always knew I had a heart murmur-- they had discovered it in high school when investigating Marfan's-- but it turned out my heart was a bit more deformed than I thought. I had to wear a tangle of cables for a month while they evaluated its beating, and I ended up with one very unfortunate voice mail that insinuated I was terminal. After calling back, I was able to resolve the misunderstanding, but it was upsetting to say the least. I don't think I felt the terror of the first time, but still, it had some emotional impact.
I had gone from being able to hike 15 miles in a day, loving rock climbing, and being able to throw a man more than twice my weight across a room to being unable to sit up in bed in a short few years. For someone in their early 20s, that kind of drastic change is unexpected and concerning. While I laid in bed, feeling as if every cell in my body was dying, I wondered how long I had to live. I became slowly comfortable with the idea that I wouldn't last long, and started thinking of the practical things. I didn't have much money, having spent it on medical fees, and my immediate family was all but estranged after I left college. I didn't have many friends, since I got sick right before graduating and everyone had left the state to rejoin their families, or alternatively didn't contact me when I couldn't give them rides anymore.
But I was concerned for my husband and my cats. He immigrated to the US as a teen and has never had many friends. Besides his mother, he has no family here, and he doesn't get alone well with others. I was his first serious relationship, he moved straight out of his mother's home and into my apartment-- he never learned to take care of himself. Before getting sick, I did all the chores around the house, though I wasn't happy about it. After a year of my being bedridden, the trailer that we lived in was filled with four feet of trash in every direction. It looked worst than the hoarder home of my great grandmother all those years ago. I couldn't take care of the cat litter, and I could see they had started getting ammonia burns on the pads of their paws when they jumped up asking for pets.
My own body was not faring any better. I couldn't even sit up to drink, and even if I could, drinking meant I would need to go to the restroom. Without my husband to carry me to the toilet, my only option would be to wet the bed-- something my guilt couldn't handle when my spouse was already working 10-hour graveyard shifts to keep us fed and housed. Those years before I got diagnosed and was thus unable to apply for disability were dark times. I didn't leave the house for over two years, except for doctor appointments which I had to be carried to. I went to two to four doctors every week, I still don't know how we managed to make it work, either financially or time-wise.
Most recently, I had been investigated for COPD, which has an average lifespan of 4 years after diagnoses. Those numbers wouldn't necessarily be accurate, as most individuals who have it are older and have a plethora of other conditions which affect their health. But somehow, at that point, I wasn't worried at all about death. Even the year before, when I was investigated for vascular EDS, with an average lifespan of 50 and death from intestinal rupture, I didn't really feel anything. (I ended up being diagnosed with hypermobility EDS, which does not have the same life-threatening complications.)
Somewhere along the way, I started to see death as less of a looming terror and more of a natural part of life. I think one conversation with my mother really affected me. We had started to become closer after I became disabled, and she started driving down to visit every few weeks. When I was told I may be terminal, I felt obligated to tell her about it and she told me "Life expectancy isn't the be-all-end-all of living. I'm a nurse and I have seen lots of people live for years in horrible suffering, while others have fulfilling lives that are suddenly cut short. The truth is, no one knows how many years they have on this earth. What is important is not how much time you have, but what you do with it."
Ever since I got sick, I had gotten used to people treating me like a fragile existence, something pitiful. Somehow, those words from my mother, the woman who brought me into this world, had a profound sense of respect and wisdom. When thinking of a mother hearing her child may die soon, all I could think of was TV mothers weeping over their children in stories. Lines from shows saying a child should never be buried before their parents. That grief was displayed to the viewers as a symbol of the ultimate, unconditional love. As much as these women were ruined, that is how much of themselves that they gave to their children.
To me, however, my mother's simple words and acceptance of my life, no matter the length, held much more meaning than inconsolable weeping ever could. I realized that I'm tired of people grieving for me while I'm still alive, and being seen for who I am, and having my life respected as normal, as a part of the human condition, is what I wanted all along. I don't need people to pity me, who spends most of my days laying in bed. I don't need people to feel sad if I might die in a few years. I don't need to be healthy or have a long life for my existence to have meaning.
The truth is, I am not unique or tragic. There are millions of people who are as sick if not sicker than myself, and we keep living every day. And there are healthy people, who expected to live to 90, that die in accidents. And both of those things aren't rare. They happen every day, and it's normal. There isn't any reason to be uncomfortable at the idea that people live differently than you, or that people die. No one in this world is immortal, and time isn't the same as quality.
I don't feel guilty about how I look at death anymore. I know it's not the same as the neurotypical experience, but I feel at peace with it. And I don't think that makes me callous. Death is a part of life. I've lived closer to death in a lot of ways than the average person, but rather than making me morbid I feel that I appreciate life even more. Because of the months I spend in bed, I really treasure the time I can spend outside, time with loved ones, and planning adventures.
Chronic illness and death don't have to be dramatic or sad. It's different, and there are ups and downs, but at the same time, it's not unique. When society can accept this, I think we will be able to see less disabled people stowed away in back rooms and more accommodations in public, allowing us to engage in common spaces even when we aren't able to perform health.