Thursday, June 30, 2016

Problem Child

      As many of you know, I recently returned from an AP Literature trip to England. When we first arrived in Manchester after a long flight from the United States, we met up with our tour guide for the week, who was patiently waiting for us in the airport. After a couple of brief conversations with him, in which we covered my arthritis, veganism, and delayed luggage, I suddenly realized that I was the "problem child" of the group. There I was, not even five minutes into the trip, and already I had a host of issues that would require repeated efforts to accommodate. I felt terrible, but there was little I could do, and so I focused on making myself as flexible as possible.

     Luckily, my arthritis did not flare at all during the majority of the trip, and it was only slightly aggravated during the last two days in London. I tried to keep this under wraps, but our tour guide totally did not believe me when I answered his inquiry about how I was feeling with a overly positive response (sometimes I'm a good liar, sometimes not so much), so I ended up reluctantly confessing that my knees were a bit swollen. I insisted, however, on fully participating in all that the day had to offer and on keeping up with the rest of the group. Really the issue was the fatigue, but I just plowed through for 10 days, fell asleep before anyone else every night, napped on bus rides, and allowed myself to collapse once I got home. I even earned the nickname "Grandma" for how early I retired to my bed, which I embraced because everyone tells me I'm an old soul anyway and I'd rather be thought of as a grandma than be thought of as sick.

     The feeling of being a "problem child" has been an unwelcome yet familiar one for me ever since my diagnosis. Even within the rheumatology world, I was well aware from a young age that I was a complex case disliked by my doctors. No one likes to feel like they can't help someone, or like they are not good enough at their job, and I suspect that sometimes the mysteriousness of my case served as a let-down to the savior complex present within many medical professionals. Even when I was surrounded by people experiencing my same illness, I was still the "problem child." Of course, I had no idea what to do about this. I couldn't just make my body simpler or provide any answers for them. It became a strange learning experience in which I began to accept that I am often the odd one out and make light of it through humor.

In the olden days they thought that drinking from this bath would
cure illnesses. Being the excellent patient that I am, I tried it out
for myself even though the water was warm and disgusting, but it
turns out I still have arthritis. Oh well, at least I tried!
     Last night my joints finally retaliated to the very active trip, particularly my knees, hips, and ankles. When I woke up this morning I decided, "I have too much to do, I don't have time for a flare," and I popped up out of bed to get to work cleaning my room and finishing up this post. But as I took my first few steps, which were embarrassingly wobbly, it became apparent that my hasty declaration was less empowering than I expected and more painful. So much for that. But even though I am not feeling particularly strong or courageous or energetic today, I am going to do the things I need to do and be grateful that although I am a "problem child," I still get stuff done.

       It is true that I sometimes need more from people than my peers do. It is true that feeling like a "problem child" places a terrible burden on me that I sometimes struggle to carry. But it is also true that despite these things, there are people that I love and people that love me. There are things we cannot change about ourselves, no matter how hard we try or how much water we drink from a Roman bath. Nine times out of ten, we become closer to rather than further from the people who offer their help to us. The ten percent of the time in which receiving help sort of backfires and we are treated differently by the person who helped us is always the first to come to mind, but it is not the norm and we cannot allow ourselves to be jaded by people who are unable to see past arthritis or treat us like we are anything more than a walking illness. It hurts tremendously, but it is no reason to forego assistance when we need it the most

     Last summer, when I experienced a painful day of arthritis fury at Governor's School, one of my teachers sat with me for a bit in preparation for a long journey down the stairs in a building with no elevator. I was upset and frustrated about the whole situation, and I repeatedly assured him that I would be fine going down on my own, because the only feeling worse than being held back is holding other people back. He was quiet for a minute, and then responded by saying, "A world where people don't help other people, where that's a burden to them... That's not a world I want to live in." That has stuck with me a lot. I don't want to live in that world either, and part of creating an ideal world where help is freely given is having the grace to say, "Yes, I'm sort of a problem child, yes, I need help right now, thank you for helping me."

     Any situation that forces or allows us to become closer to people and to expand our vision of what humanity can be is an opportunity rather than a curse. Maybe being a "problem child" isn't the worst thing to be.

Saturday, June 11, 2016

The Frustrations of Post-Graduation Fatigue

       Life is quite a big thing, and sometimes I feel incredibly overwhelmed by its vastness and complexities, and this is just one of those weeks.

Faith and I took some graduation photos living out one of
our shared passions: eating vegan chocolate ice cream.
PC: Jurnee Paylor
      I have been out until around midnight, give or take an hour, for the past two nights, and the same may be true for tonight. I have been busier than I ever thought possible, which is crazy because I have already graduated and school is not even a thing right now. On Friday, I was so busy setting up for Faith and I's graduation party that when my oral surgeon made me schedule an urgent appointment with my pediatrician I almost lost it. I did not have time for the appointment, but after protesting against it on the phone with my mother, who showed me a lot of grace even though I was being pretty jerky, I went anyway, which was probably a good thing because every time I go to the doctor we seem to discover more problems but at least the problems we found yesterday were treatable. When my pediatrician entered my exam room she said, "You don't have time to be sick," which was the truest thing I have ever heard in my 17 years of existence, and even in the midst of my hurriedness I found myself grateful for providers who understand that being in medical clinics all of the time is not the way I want to live my life.

      On this past Thursday, my mom asked me to tell her my schedule over the next couple of days. I explained the millions of things I needed to accomplish on Friday, from saying goodbye to a teacher to driving my sister to picking up balloons, before moving onto Saturday. When I mentioned that I did not have anything planned between 12:00 and 2:30 today, my mother quickly and very seriously responded, "Good. Don't plan anything there. You need to take care of your health."

      I know she is right. She is an experienced pharmacist, a responsible mother, and an incredible woman. If she says I need to take time for my health, then I believe her. And the truth is, I do need to be a little more thoughtful about how I care for myself, because when I ignore the health aspect of my life everything slips out of hand. I contract temporary illnesses, my arthritis flares, and my pain levels increase. I forget to take my medications and I suffer the consequences. The nausea (which recently disappeared but then relapsed) becomes miserable, and I spend the wee hours of the morning praying that there is no more food in my stomach to throw up. My energy levels drop sharply, and I go from being a regular teenage girl to feeling like a frail elderly woman.

PC: Jurnee Paylor

        My mother sees that all of the events following graduation are wearing me out. Fatigue hits so hard, and I think it must be challenging to understand from the outside looking in, because it is drastically different from tiredness. Yet even though my mother is the picture of health and does not have personal experience with fatigue, she seems to get it. We have spent six years figuring all of this crazy medical stuff out, and while there have been several overhauls of the members of my medical team since the sixth grade my mother has always been there.

       The worst moments of my fatigue over this past year led me to sleep at a Christmas party, in a teacher's classroom before school even started (which is horribly embarrassing because everyone probably thinks I am just an irresponsible teenager who stays up late watching Netflix and procrastinating homework), and during phone calls with friends. It is difficult to manage because my level of fatigue does not correlate at all with how interested I am in something or how entertained I am. I could be talking to Hillary Clinton herself on the phone and the fatigue would still knock me right out.

     Another factor in this whole situation is that I have a very limited amount of time left at home. The reality of moving away is hitting me like a freight train, and my weak health is not helping. I want to be with people as much as possible. I want to see all my friends and family, and I want to be fully present. I want to live in the moment. I love people and I want everyone to feel appreciated. But fatigue tells me that I am not enough. I am not good enough to be around all of these healthy people who want to say their goodbyes to me, because I cannot knock the fog out of my brain. I want to say things that are genuine and kind, but sometimes I feel too exhausted to get the words out. So far my health has not stopped me from attending any of these post-graduation functions, but I still have to make it through today, and that is a daunting feeling. My body is begging me to crawl into bed for a solid fifteen hours, but that is at least seven hours wasted sleeping when I could be loving people. I was very frustrated with my health during my drive home last night and found myself with watery eyes trying to drown my thoughts with the blaring of the radio. I decided to handle this feeling responsibly and talk to a friend about it over the phone, but by the time I got home and picked up the phone I was literally too tired to discuss the subject so I just pretended like everything was okay. Fatigue so extreme that it prevents a person from talking about fatigue is a serious matter.

      Part of my problem is that I live very intensely, and not always in a good way. Taking care of my health means skipping other things sometimes, but I automatically assume that I am a terrible person if I do because it means I care more about sleeping than making sure someone else feels important and cared for. Though I am still in the process of figuring all of this out, I know this assessment does not quite align with reality. I know that I am not at my best when I am battling fatigue, but I value being present even for the little things so much that I always end up going and dreading the physical consequences. But I have been having a lot of fun this week; it has not been miserable at all, it has just been exhausting.

     Before this post reaches its conclusion, I want to thank my extraordinary friend Faith. Faith and I have been through quite a lot together since the eighth grade, not so much in terms of friendship troubles but in terms of life experiences. It has been such an honor to grow up with someone so incredible. Arthritis often causes me to draw inward and to become very private, and Faith manages to respect that while gently pulling it all out of me and refusing to allow me to isolate myself. I am 100% confident that she would treat me the exact same way if I was 100% healthy, and there are not many people I can assuredly say this about. She has shown me so much compassion over the past five years, and I genuinely cannot imagine life without her. We have shared our families, homes, joy, and suffering with each other in a way that can only be described as holy. Once when we were in the car together she casually noted that she learns more about my disease and how I am feeling from reading my blog than she does from conversations that we have. I was not surprised by this, as I can be ridiculously avoidant of the topic in discussions I have, especially with my friends, and I like that with my blog at least people get to choose whether to read it or not. As she was gathering her belongings to get out of the car,  Faith followed up her comment with, "If you want to talk about it, call me." And she meant it. Sometimes I call, sometimes she calls, sometimes I am unable to remember who did the calling and who did the answering. It was her Christmas party that I fell asleep at, and when I apologized profusely for my awkward mid-party nap she gently and very patiently assured me that everything was totally fine and made me feel like a human being again rather than a walking case of juvenile rheumatoid arthritis.

PC: Jurnee Paylor

     I will make it through today, but I have not been very smart in managing my health over the past week and I need to get back on track. Unfortunately the next two weeks are really not an ideal time to do so, but I am confident that everything will work out in the end. It always does. Luckily, my joints have not been severely affected by this dip in my health, and I am having very little trouble walking, which is a real blessing. Plus, when I am surrounded by people as incredible as my mother, my pediatrician, Faith, everyone who came to our graduation party, and the young nurse who dealt so kindly with me yesterday, I have no doubt that I can make it through the rougher days, weeks, months, or even years.