and I want to do a photo shoot— with my medical pump. That is, if The Annual Arcanea is interested.”
Vara gave a pshing noise. “Are you kidding me? They offered a huge payment for an article that was ready for tomorrow’s paper.”
“I don’t need the money. I just need someone to tell my story,” I said.
Vara sat across from me. She took out a pencil and a notebook from her bag, setting it in front of her and placing her glasses over her silver eyes. “If you’re ready, we can begin now. Can you start by giving me a quick summary of your disability?”
This was an easy one. “Common variable immune deficiency disorder is an antibody deficiency that leaves the immune system incapable of fighting off against bacteria and viruses. It’s very rare, and is treated with antibiotics, as well as an infusion of human plasma, which contains antibodies that people like me need.”
Vara looked up. “Just to be clear— because I know stupid people are going to ask this— you aren’t stealing people’s blood through dark magic, correct? The plasma is donated through centers by volunteers, where it’s taken to a processing center and made into medicine.”
“Yes. There’s nothing magical about it. It’s all medical, and volunteers make the choice to donate their own plasma. They aren’t forced.” I wasn’t offended by Vara’s question. If anything, I appreciated she was thinking of all angles, to make my story fair.
“And it’s not contagious, I’m assuming.”
“No. From what I’ve read, it’s mostly hereditary, though sometimes people can develop it without it being in their family line,” I said. “I probably have a relative in my ancestry who has a history of CVID that I don’t know about. The problem is in my DNA, some sort of genetic mutation— I can’t give something like that to people.”
Vara nodded. “It’s different from diseases like AIDS, correct?”
“Yes. AIDS is an acquired immunodeficiency syndrome that’s caused by a virus. CVID is a primary immune disease, which means it’s a deficiency within the immune system. It’s not an autoimmune condition, where the body attacks itself, though people with CVID can develop autoimmune issues.”
Vara wrote something down on her notepad. “So, personally, what precautions in your daily life do you have to take that most people don’t even think twice about?”
That was a loaded question. I didn’t know how to summarize. “There’s so much. I have to be careful with how much I do in a day. I only have so much energy. If I push myself too hard, I’ll be in bed the next day and be unable to get up. I have to evaluate how far a walk is, and if I can make it that day. I have to be very aware with my food intake, and check everything that goes into my meals so it doesn’t make me sick. I have to make sure I have my medicine with me at all times, and take it at regular intervals. And I have to be extremely cautious when I go into public places. Anyone could be carrying a virus that might kill me. I stay away from crowds, and sanitize as much as possible. Sometimes, I’ll wear a mask if I have to go somewhere that’s really busy, so my risk of getting infected goes down. Being at a university makes staying well tough, but I deal with it by washing my hands a lot, and by exercising whenever I can.”
That was just a taste, but I felt if I kept going, we’d be here all day. Vara nodded and said, “So do you have to take precautions with certain things, like being careful around smoke?”
“I haven’t developed asthma yet, though it is common for CVID patients. We have chronic lung issues. I do have a sensitivity to smoke, and I can’t tolerate extreme temperatures, especially extremely hot days. I get very sick if I’m in the sun for too long. I also have a lot of digestive issues. Since the immune system is based in the gut, I have to tailor my diet so I don’t get really ill, and end up puking back up what I ate— sorry, that’s too much info.”
“Not at all.” Vara scribbled on her notepad. “Have you developed any secondary conditions?”
“Nothing that’s diagnosed yet, but I’m sure I have some,” I said. “I have a lot of pain when I move, and when I sleep. My muscles get very tender and stiff. I have to take pain relievers