I write this from the parking lot of a hospital. Don’t worry, everything is fine now. My sister, Faith, was having stomach aches and needed a ride so I took her. She has gone through all of the tests and everything is clear. Just another day in the strange life of someone with lupus.
Hospital trips are sadly a normal occurrence for my sister. She has been in for headaches, stomach aches, arm aches, among other illnesses and general not-feeling-well-ness. The main thing with lupus is that is makes the nervous system think that her body is a foreign entity, so everyday, her body tries to destroy itself thinking it is protecting her. As such, she has had numerous diseases come up because her immune system was too weak; a few years back, she even had thyroid cancer.
Another strange problem that comes with it is that her body doesn’t accept pain meds like almost everyone else. Even some of the strongest drugs have failed to work on many occasions, meaning that she has no good way to cope with the pain. She often just has to endure it and hope that it goes away.
She lives most of her life in pain. While she used to be able to do things like play volleyball and practice dancing, her decaying bones have prevented her from continuing doing those things she loves. She gets tired easily but the pain often keeps her from sleeping long hours, so she needs the rest but can’t seem to get it. I’ve never seen anyone fight through so much just to make it through a normal day.
My understanding of the world has changed because of Faith. I’ve realized that disabilities are not always obvious and that the world has created a system that does not take those disabilities into account. I’ve realized how many buildings in our society are not handicap accessible, including many of our churches. The way that companies treat their employees is also problematic, since most offer limited paid leave and little to no healthcare coverage. Many companies, specifically major corporations, treat their employees as cogs in a machine, and the first cogs to break down are those with disabilities. It doesn’t matter that my sister works harder than everyone else at her job – she is physically unable to perform tasks due to her condition, and her employer often fails to take that into account.
Because of Faith, I’ve also become an earnest supporter of Medicare for All policies. Her condition requires many medications in order to help her get through a normal work day, most of which cost a fortune due to bloated costs from corrupt pharmaceutical companies. On top that, she has needed many surgeries to help limit pain and regain some strength that her body has taken away. Those surgeries aren’t cheap and I often think about what her life would be like if she did not have medicaid; I’m not sure she would still be here today. Given this reality, I realize how important it is that everyone have access to the care they need regardless of how much money they have. People should not profit on the health, or lack thereof, of others.
Faith has also taught me to appreciate every moment I have. Every time I get a text or a call from my mom letting me know that Faith is going to the hospital, I wonder if this is it. I wonder if this is the last time I’ll be able to be with my sister. Honestly, as I drove to pick her up tonight, a million thoughts raced through my head. I didn’t want her going to the hospital because of the virus – as I’ve mentioned before, the virus is incredibly dangerous to someone with lupus – but I realized that it was a necessity because if she did have something serious, it needed to be addressed right away. Dropping her off at the hospital today scared me.
But dang, my sister is one of the toughest people in the world. How is it that someone can live through pain as much as she does and still keep going? How can someone tolerate as many hospital visits? As many sleepless nights? As much stress as she endures trying to avoid things that people without an auto-immune disease don’t have to be concerned about? She just pushes through, somehow someway. She will be the first to admit that she doesn’t do it perfectly. She has her good days and her really bad days. But I know that if I were in her shoes, I would not be handling it nearly as well as she does. I truly admire her perseverance and strength.
So don’t worry, everything is fine now. It may not be in a few days, or in a few weeks, or in a few months, but no matter what happens, I know my sister will handle it like she always does. I’m glad I get the chance to stand alongside her through all of it.