The second trip to Miami went alright. The specialist believes that the lupus is causing heavy inflammation, which is why the scar tissue is growing back so quickly. My vision has actually been getting worse. But I can still see to get around just fine, and we’ve started a new eye drop and medication regimen. Honestly, I was pretty nervous when we started the new medications. One is an immunosuppressant and the other is a chemotherapy drug. Side effects include nausea, vomiting, abdominal pain, gastrointestinal issues, swelling of the calves, alopecia (losing your hair), etc. Some more severe (but rarer) side effects include mouth blisters, rash (SJS again?), bladder cancer, sterility, etc. I wasn’t exactly excited to read the pamphlets.
Toward the end of my stay in the hospital in 2008, when we were actively doing physical therapy to readjust my muscles to being out of bed, I became severely exhausted. We thought, of course, that it might just be the strain from everything, but when we did a blood count, it turned out my hemoglobinlevel was severely low. Recommendation: blood transfusion. Now, the probability of getting any type of contagious disease, especially something as life-threatening as HIV, is extremely rare. However, the way my mind saw it at the time, I had already gotten something extremely rare. I wasn’t keen on the idea of taking any risks, even if it meant I would start feeling better immediately.
I was sluggish at best. I could barely eat and was constantly fussy because the nurses kept waking me up to put in eye drops, take medications, and eat, eat, EAT! I couldn’t eat. It made me frustrated to even think of chewing. Even though the feeding tube had been awkward and annoying, I often wished they’d put it back in simply so I wouldn’t have to worry with solid foods. I could barely keep my eyes open because of the light sensitivity, and all I really wanted to do was sleep. Yet, the nurses kept pushing, the doctors kept pushing, my mother kept pushing. I had several hours to think about the blood transfusion, but my mind was made up. I didn’t care how awful I felt. I was sick of having foreign substances messing up my body. I just wanted it all to be over. But it was far from over, and my condition wasworsening.
Then, Cute Doctor stopped by to see how I was doing. Cute Doctor was obviously adorable and very attentive to my case. He was a first-year resident and very excited to be working on such a rare syndrome. A few days later he would have to remove a staple from my bum because it was inverted and the nurse was scared to do it, but at the time I wasn’t terrible embarrassed to be around him. (***Warning: Mildly uncomfortable but mostly humorous material*** Apparently I’d already forgotten him having to reinsert the catheter a week earlier when about five nurses were standing around bewildered as to where it might go because of the severe swelling. I had been awoken from a lovely nap to the sound of muffled voices. Before I could even realize what was going on, Cute Doctor had happened by the room and offered to help. Being a man, he apparently didn’t have such a squeamish demeanor when it came to inserting the catheter into said swelled area. Needless to say, I was definitely fully awake a moment later.) Despite various and sundry occurrences, I liked having Cute Doctor around. He was pleasant, usually smiling, and he had been there every step of the way.
At this point, everyone had to dress in gowns and use masks in my room because my PICC line had been exposed to an infection. A few days later they would finish running tests to determine that I never had any infection, but for a while it was rather annoying to visit me. There was the poufy yellow gown, the funny blue slippers, and it was even recommended to wear the ridiculous blue poufy cap! While most visitors declined the silly garb, all the nurses had to adhere. It was a chore coming in and out of my room. But Cute Doctor stopped by a few times a day anyway, much to my happiness. On the day in question, he listened to my breathing and my heartbeat, then began flipping through my chart.
“What have you eaten today?” he began like normal.
He liked to tell me about the various flavors of ice cream in the cafeteria. I still wasn’t eating much, so I would try to make it sound like I’d eaten enough when usually I hadn’t. My mom was there in that final week, so she’d typically pipe in going down the list of how many bites I’d taken of which food item. Honestly I don’t think he paid much attention, but it kept my mom’s mind active while he looked over the charts. We ended up going home with a stack of copied pages somewhere between two and three inches thick. It was ridiculous how many tests could be documented in the span of a month. Finally, Cute Doctor got around to the real reason he’d stopped by.
“So have you decided whether or not to take the blood transfusion?”
He listened patiently to my concerns as I weighed the options out loud and gave my conclusion that it just didn’t seem like the best idea. He told me he understood my concerns but was worried my condition wouldn’t improve without it. He explained that my body was trying desperately to heal but was very much hindered by my low hemoglobin level. After all, the odds of me catching something from a blood transfusion were very low. I forget the statistic he gave, but I do remember it was a higher risk than my chances of getting SJS. I wasn’t exactly convinced, but then he changed his tactic.
“Would you stop getting into cars even if you had a bad accident?”
I hadn’t really thought of it that way. It was so simple a concept, but it was difficult to actually make the leap. Every second we are alive, we take similar risks. The probability of crazy things like my allergic reaction happening are very slim, but they do happen. Does this mean we stop living? Smoking causes lung cancer, but do we walk around downtown wearing gas masks? In fact, I had been in a car accident, though not severe, and I had driven the very next day. It begs the question: why do some risks seem so much more difficult to take?
Naturally, most of us are risk-averse. We don’t feel comfortable stepping outside our little bubbles, even when it means gaining something wonderful. Sure, I was almost guaranteed to feel better after receiving the transfusion, but the worry of even a tiny chance of having something else horrible happen made me reject the idea entirely. At least, it made me reject it at first.
The past three years since getting out of the hospital have been strange. I feel like I’m constantly pulled between the frantic desire to live each moment as if it were my last and trying to plan for a better, brighter future being careful not to make huge mistakes that might put me in the hospital again. I’ve always been a planner. I love organizing my day and jotting down notes in my agenda. But I have an impulsive streak a mile long. In therapy, I’ve been discovering where this comes from and how to counter it, but it has definitely led me to take some rather interesting risks along the way. On the flip side, I have a lot of trouble taking other risks. I worry about every medication I take but am perfectly fine to decide on a whim to audition for the Renaissance Festival or drive Lord knows where just for the hell of it. This back and forth has kept my mind and my mouth constantly struggling against one another. Do I say what I feel? Do I feel what I think I feel? Do I really think what I’m saying? It’s been a constant battle. My therapist has be working to meld my “emotional mind” with my “logical mind” rather than jumping back and forth between the two. This means thinking about my emotions and giving them time to fully process before I speak or act on them. It means considering how I feel about something before I make a difficult decision. Risks, however, are often quick decisions. I’m not sure we’ll ever know which ones are the responsible ones to take.
There’s a song I was introduced to a couple years ago called “A Talk with George” by Jonathan Coulton. It’s about a man who has spent his life going outside of his comfort zone merely to have the experience. It’s final message is:
“Don’t live another day unless you make it count
There’s someone else that you’re supposed to be
Something deep inside of you that still wants out
And shame on you if you don’t set it free.”
It’s nice to be reminded what we can gain by taking some risks. I did accept the blood transfusion, and I did immediately begin to feel better. I did join the Renaissance Festival and meet an amazing set of friends that I never want to be without. There are risks every day: to get out of bed, to eat strange foods, to try on a new career, or to fall in love. Things don’t always turn out the way you expect them to (sometimes you take a medication to get better and end up a whole lot worse), but many times those risks lead us to amazing life experiences we wouldn’t be the same without.
I stand by the risks I’ve taken in life. I was worried about the medications I just started, but I have hope that they will help. I might regret things I’ve said and done, but big risks like attending theatre school in Ohio, accepting a date with a guy with long hair, or even starting this blog are not things I regret. Usually, it’s the big risks we take that offer the sweetest rewards. I’m not saying skydiving is for everyone, and I’m certainly not advocating anything against the law, but I am saying “enjoy yourself, do the things that matter, ’cause there isn’t time and space to do it all.”
***A special kudos to the women in Saudi Arabia who are speaking up for their right to drive!***