In Light of Disability Pride Month
In one word, frustration. In many words, exhausting, isolated, distanced, and maybe even a little depressed at times. I have Primary Immune Deficiency, specifically I have low levels of IgG in my body. IgG is one of the first lines of defense for a person’s immune system, so you can imagine that I was susceptible to catching illnesses, especially sinus infections, bronchitis, and pneumonia. Last year before I graduated high school, I caught a sinus infection that eventually turned into pneumonia. I don’t remember how many times I went back to the doctor, but I remember my family doctor telling me that I would have been admitted to the hospital if it weren’t for two factors; 1) my breathing was never labored and 2) my mom is an extremely great nurse, which he knew. After missing two weeks of school, I went back when I probably should’ve stayed home, but I knew I couldn’t miss anymore school. Regardless of this (and the rest of my absences due to other illnesses), I still ended up graduating second in my class with a 3.975 GPA. However, all the absences were draining, so I knew it was time to talk to my immunologist about treatments.
He had given me a pamphlet a few months prior about a treatment that you do at home once a month. I opened the pamphlet and my hopes had dropped-it required me to insert a needle into the fat tissue of my belly and infuse blood products into the fat that would be absorbed over a few days. There’s a side effect that comes with it called “pancake belly”, where your belly swells up from the excess fluid. I had problems gaining weight up until I was sixteen. Many of my classmates either asked if I had an eating disorder (which I did not) or said how jealous they were of my underweight figure (I’m not even getting into the wrongly desired physic of society). To give you a good idea of how thin I was, my allergist/immunologist put “malnourished” in his notes of me when I met him for the first time at 15. This “pancake belly” was quite a bummer because I had just started feeling good about my body and the thought of ruining that with a mildly painful and swollen belly didn’t appease me. So, I just said that I didn’t think I was there yet and shoved the pamphlet away until after graduation, when the “pancake belly” seemed small in comparison to getting pneumonia like that again.
So, we had the conversation with my immunologist. I set up a time for a nurse to come by and basically train me on this procedure, known as an immunotherapy infusion. My doctor ended up going with five smaller doses every two weeks instead of the big dose once a month, which meant less fluid each time and less pancake-ness, but more pancake days and more needles. I ended up with five, together leaving a swollen dinner plate-sized area on my belly. The next day, I could pass for two months pregnant. I have a small wardrobe of larger clothes that fit me during my pancake days. Most of the time, I wear dresses or leggings when I can, because I can’t fit back into my jeans until four days after the infusion, sometimes three if I’m lucky. It hurts, too. Obviously sticking five needles into yourself isn’t fun when your instincts are trying to stop you from deliberately hurting yourself, then it stings the whole day afterward and hurts the next day when I bounce around. It feels like you have Jell-O under your skin, although my mom says that’s what pregnancy feels like.
With time, my immunity got better, but the treatments get tricky sometimes. My skin has gotten thicker (literally) on my belly because of all the needle pokes, so they started to hurt a little more. I started developing “knots”, which are little hard spots under the skin from the infusions. But I handle it. I move on with my life, I don’t complain, and I try to keep the treatments from impeding my life as much as possible; they were helping me, after all. I was finally on a road to normalcy with the treatments and with my life.
I was supposed to be doing treatments for about a year, then I was going to get tested again to see if my immune system kicked itself in gear. My timeline was derailed when COVID-19 hit. March 10, 2020 was the last time I was around people outside my household, spare getting bloodwork and an important doctor’s appointment with precautions taken. I will be on treatments until after the pandemic is over because now that I can’t come in contact with other people, my natural immune system has lowered its defenses (it doesn’t need them since I’m not around anything).
Because of the pandemic, there were shortages on some of the supplies I have to keep stocked for my biweekly infusions, like alcohol pads. The blood product I take has to come from humans and when the donations went down, we were notified there was a shortage. For me, that wasn’t catastrophic since my mom could work from home and my dad took family medical leave from his work, so we did everything we could to stay distanced from everyone and sanitize everything according to CDC standards. Like I said, my mom is an excellent nurse, she knew the hospital protocols for sanitization, and she kept up to date reading all the latest (credible) research she could get. On a side note-I’m not just saying she’s an excellent nurse because she’s my mom, she has been editing nursing textbooks for a couple years and was even offered a job from the National League for Nursing to be an accreditor for them.
I have a one-and-a-half-year-old nephew that lives with my brother and sister-in-law in another state. They’re expecting another baby boy in September. I have two grandmothers who are 79 and 80 and both live alone, one has dementia. I haven’t seen most of my family-who I am very close to- since Christmas. Because of my immunodeficiency, I’m considered high risk. I’m missing my nephew grow up. I’m missing the precious time I have left with my aging grandmothers, one of whom doesn’t remember her own great-grandsons’ names all the time. I missed out on my cousin’s graduation. Not to mention, I haven’t seen any of my friends since March, some even before then.
I can’t come in contact with anyone outside of my household until there’s a handle on this virus, or a vaccine that a large majority of people get, or a widely-available treatment that lessens the severity of getting the virus. I am stuck here while everyone else’s lives go on. But it’s not just me.
The purpose of writing this is not for pity or sympathy. The purpose is to evoke empathy and to educate. I believe that most of the problem with this pandemic and the squabbles over it is a lack of empathy. When I was little, I discovered that I could only feel and measure my own pain; I couldn’t feel or measure anyone else’s pain except by their reaction to it, if they had one. People with disabilities often don’t react to pain because this is our norm, this is how we live. Since we don’t react to pain, people don’t know we’re in pain, because to us, this is normal.
Right now, on the surface I appear fine. I crack jokes about all the times my family has annoyed me, how my dog has become clingier, etc. But in reality, I am struggling. I miss my extended family and all my friends so much. I am a social butterfly; I love talking and being with the people I love. The closest thing I’m getting to social interaction is virtual interactions. Sometimes I get to sit in my grandmothers’ driveways while they sit 30 feet away and talk to me. But outside my family, that’s it. Like I said, though, it’s not just me.
There’s people out there with cancer, autoimmune disorders, heart conditions, diabetes, others with immunodeficiencies that are probably worse than mine; there are so many people who are hurting and you don’t even know it. You can help them and it’s very easy.
Number one, wear the mask! Yes, it’s uncomfortable and hard to breathe, but I once had anaphylaxis and an anxiety attack with one on for two hours and I was fine. Oh, and I have asthma. If everyone wears a mask, we could have this virus under control in a few months! And for the people with political reasons-wouldn’t you rather have your rights “infringed” (which is false) instead of being responsible for someone like me being sick, in the hospital, on a ventilator, or dead? Either wear it or stay home.
Two, donate blood! Bonus: Red Cross gives free COVID-19 antibody tests with each donation! Your blood can help me and so many others. There were people pre-pandemic who needed blood, imagine how bad the need for blood is now.
Three, donate money if you can. So many places are suffering financially, including our very own Mount Union. Professional musicians and singers are practically out of paying jobs right now, many high schools lost money from sporting events that never got to happen, research centers working on COVID-19 vaccines are risking literally billions to come up with a vaccine as soon as possible (please get it, by the way!) Churches, local businesses, small businesses-everyone except computer companies can benefit from a donation right now.
So please, think about your actions and how they will affect others. Think about the others that you’re affecting. Think of the little kids in hospitals, the people who have lost family from this, the people who are stuck, and the people who have to go and face it every single day with the uncertainty of the safety of their own. Please think.