Josh Blue

I am registered with Disability Services at the University. Admitting to a University official that there was something I couldn’t do was no easy task, because up until this point in my life I have been an extremely dedicated over-achiever (see my first blog post – i.e. I graduated with honors from an Ivy League University, never had a C on a transcript in my life, etc.) But I had to do it. I may be able to withstand the pain and cramping in my fingers for twenty minutes while I type this blog post, but there is literally no possible way that I could type for three hours in a row right now.

However, typing for three hours straight is exactly what a law exam requires you to do. And even in my “healthy” past experience I have needed just about every minute of the allotted three hours to even attempt to properly address the questions. Not to mention that a law exam is an extremely high-pressure typing situation because the exam is your entire grade for the course. So no matter how carefully you have done the reading, how well you have paid attention in class, and how thoroughly you have outlined the subject in your notes, if you mess up on the exam it shows up on your transcript. Period.

After my diagnosis I literally had nightmares about law exams. I would be halfway through explaining the fundamental rule of pacta sunt servanda when my fingers would become so cramped and twisted that I would start hitting the wrong keys. Suddenly my well-reasoned answer was gibberish on the page. But before I could go back and fix it, time would run out. And since those nightmares are now legitimately possible, I realized that I had to register with Disability Services to see if they could provide me with some accommodations for my physical limitations, at least until we identify a treatment that makes the pain more bearable. So, I submitted paperwork from my doctor confirming my physical disability and I admitted, out loud, that there are some things I simply can’t do right now.

In the end, I’m really glad I did. And not just because it will help me get through exams this semester. On Monday, Disability Services sent out an email offering free tickets to a comedy performance. APL and I both love stand up comedy, so I responded immediately and was awarded two free tickets to see Josh Blue. I had never heard of him, and it’s been a really rough week, so I didn’t get a chance to look him up on YouTube before we went to the performance last night. I was just looking forward to an evening that I hoped would take me away from my own troubles and let me laugh a little bit.

So I have to admit that I was a little surprised to find out that Josh Blue has cerebral palsy, a condition that affects body movement and muscle coordination. It’s caused by damage to the brain, usually occurring during fetal development. A lot of his jokes were about living with his disability, how he deals with it, and how other people view him. And let me tell you, Josh Blue is hilarious. One thing you’ll miss out on if you watch the links I posted is the interaction he had with the interpreters who were there for the deaf folks in the audience last night, which were so funny the whole audience was practically rolling on the floor laughing. I honestly can’t remember the last time I laughed so hard.

I don’t think it makes sense to compare Josh Blue’s physical disabilities with mine, as they are obviously very different. And just because his disability may be “worse” than mine doesn’t make it wrong that I’m having so much trouble dealing with the new pain in my life. I think everyone is dealing with their own disabilities, in their own ways. But I am happy to say that Josh Blue’s performance last night really helped me in dealing with mine; it was exactly the lift in spirits I needed. I certainly don’t mean to be condescending, but I thought he was pretty inspirational.

Gaijin

I’ve always been fascinated by Japan. I started taking Japanese as an eighth grader and studied a total of three years in high school. When I was fifteen, I went to Japan for a summer with the Rotary Club. On that trip I visited Kyoto, Tokyo, and Hiroshima and stayed with four different host families in the Tochigi Prefecture. Then I studied Japanese for two more years in college, and spent another summer living with a Japanese family in a small fishing village outside of Ishikawa.

I’m sort of ashamed to admit, with no chance to practice over the last five or six years, I have forgotten a lot of the language. But, even though the words and the kanji (characters) may be fading from my memory, my love for Japanese food is as strong as ever. I’ve never found a single Japanese restaurant with food as good as my host mom’s in Ishikawa, but pretty much any Japanese meal will bring a smile to my face. Miso soup. Ginger. Maki. Katsu. Perfectly steamed rice. But now there’s a problem: chopsticks.

This afternoon, in an effort to cheer me up, APL took me to get Japanese food for lunch. And though I still really enjoyed the food, I have to admit that I was pretty disappointed by my inability to work the chopsticks. My fingers just cramped up too much for me to move them properly. Where I used to be able to manipulate chopsticks perfectly, making movements tiny enough to pick up a single grain of rice, today I was reduced to eating sushi with my fingers. I never felt like such a gaijin in my life.

Gaijin is a Japanese word made up of two kanji: gai which means “outside,” and jin which means “person.” So the word literally means “foreigner” or “non-Japanese.” So, technically, it would be a proper thing to call me. However, a lot of Japanese people consider the word to have taken on a negative or derogatory connotation – something closer to “stupid white person.” The term has become politically incorrect and is generally avoided by television and radio broadcasters in Japan.

Not that it really matters what some strangers in a restaurant think, but no one looking at me today would ever have guessed that I have spent months of my life eating every meal with chopsticks while conversing with my host family in Japanese. They would have seen a stupid white person eating sushi with their fingers. And, worse, that’s what I saw too. And trying not to think about before didn't really help. Even if I never had used chopsticks before in my life, it would still be frustrating that I couldn't physically do it today.

Remicade

This entire week has been extremely difficult to get through. I did somehow manage to make it through the Scholarship Reception on Wednesday, and I think I even managed to make a decent impression on my donor, but then I came home and absolutely crashed. And I wasn’t at all ready to deal with Thursday by the time it came around. And I still feel horrible. My rheumatologist seems like an ok guy – he’s very optimistic about my prognosis and keeps insisting that we will find something that will make me feel a lot better – but the process of finding a treatment is frustratingly slow, and there are way too many hoops I have to jump through. And feeling horrible while jumping through hoops is no fun at all.

For example, two weeks ago today I went to the rheumatologist to tell him that the treatment we are trying right now clearly isn’t making me feel any better. He decided, two weeks ago, that I should start a treatment called Remicade. Remicade is a newer treatment that is supposed to be more aggressive. It is administered by IV, so you have to spend two or three hours sitting in your doctor’s office to get each infusion. Eventually you only have to get infusions every eight weeks, but during the first eight weeks you have to get three infusions. But the good news is that Remicade can supposedly have you feeling better in as little as two weeks. Two weeks have passed since we decided to start the Remicade, so why am I not feeling better? Because I still haven’t even had the first infusion.

First, I had to get a PPT test – which is a test to make sure you don’t have TB. It’s the one where they prick your forearm and then two days later you have to go back to the doctor’s office and they make sure no little bumps have formed on your arm. Even though they could have done the test at the rheumatologist’s office, my labs are only covered by my insurance if I get them done at the student health center. So the rheumatologist wrote me a script to have the test done and two Mondays ago I went to the student health center to get the test.

They wouldn’t do it that Monday. Why not? I needed to have an appointment. Are you serious? I need an appointment for someone to take 30 seconds to stick a needle in my forearm? Apparently I do. Are there any appointments available today? No, there aren’t. Are you sure there isn’t a nurse who could just place it quickly right now? No, apparently there wasn’t. Fine. Give me an appointment.

Last Tuesday I went back to the student health center for my appointment. I checked in, they called my name, we walked back to the nurse’s center, the nurse filled out some paperwork on the computer, she poked my forearm with a needle, she told me when to come back to have it checked, and she sent me on my way. The whole process took literally less than three minutes. Last Thursday I had to go back to the student health again so that they could check my arm. They checked it and decided I didn’t have TB. They faxed the results to my rheumatologist. Great, I thought, now I can start the Remicade right away.

Wrong. I have to get the rest of the paperwork in order. Because Remicade is really expensive: as in my 20% co-insurance is going to be about $600 per infusion. And I have to get three infusions in the first eight weeks. Luckily, there’s this program called RemiSTART that can help refund up to $400 of my out-of-pocket expenses for each infusion. So I have to fill out the paperwork for RemiSTART to help get through the payments. But then I have to ask the nurse at the rheumatologist’s office a question about the paperwork and she doesn’t work on Fridays. So I have to wait until Monday.

This past Monday I got the paperwork in order and finally called to schedule my first infusion. They tell me you can get your infusions on Monday afternoon, Wednesday afternoon, or Thursday morning. Apparently it is completely impossible to get this treatment if you have anything remotely resembling a real 9-5 job. So I ask, how about this afternoon? No, there aren’t any openings today. In fact, there aren’t any openings for the rest of this week. So I have to wait until next week. What about Monday afternoon? I have class until 2:15pm and I can be there at 2:30pm. No, that’s too late. The infusions take 2-3 hours and so they won’t let you start any later than 1:00pm. So that makes Wednesday afternoon out of the question too. So next Thursday morning at 9:00am it is, even though I’m not so good at mornings these days.

So now I have to wait another whole week before I even get my first infusion. And it will be another two weeks after that before I “may” start feeling better, assuming the Remicade works for me at all. So what I want to know is this: how on earth am I supposed to get through all of that? One day at a time, I guess. But with how horrible I have been feeling these days, each day has become more of a struggle.

A Flaw in My Plan

So far, my master plan for dealing with my life right now has been to take one day at a time. But this morning I realized that there is a flaw in the plan: what if a single day seems too overwhelming to deal with? It’s 8:35am and I’m already worried I might not make it through the rest of the day.

Last night I tossed and turned and couldn’t get comfortable. It felt like my hands and feet were throbbing to the point where it was audible, and the noise was keeping me awake. Needless to say, I didn’t sleep much or well last night. Which made it particularly unpleasant that I had to get up early this morning to meet the painters at our house between 7:00am and 8:00am.

The painters are re-painting the outside of our townhouse to the correct color. If you want to know why our townhouse is the “wrong” color, well, that’s a saga of months of fighting with our HOA and dealing with extremely sketchy contractors that is so tremendously frustrating that I can’t even bear to think about it right now. Suffice to say that in the next day or two, $875 for a re-paint job should finally put the whole ugly matter to rest.

But getting up early these days is no easy task. In fact, getting up at all is pretty difficult. Every day I wake up stiff and painful; like someone broke half the bones in my body by beating me repeatedly with a baseball bat last night and I have been laying in the same position ever since. APL is an enormous help when it comes to getting up. He wakes me gently, giving me time to snooze. Even though he has a rule that the puppy isn’t allowed to sleep in our bed with us, he’s been bringing her upstairs in the morning to snuggle with me and make me smile as I try to get up. On days where I have to get up earlier than usual, APL will make me a cup of tea and put it on the bedside table before he goes to work. Some days I think I wouldn’t bother to get out of bed at all without his help.

But today, while he was putting on his socks, APL accidentally sat on my left foot. The toes on my left foot are probably the most consistently painful part of my whole body. The way they got compressed this morning was so painful that I was instantly in sobbing tears. APL felt awful about it. And I’m sure he felt worse when the time forced him to leave for work while I was still curled up on the bed, sniffling.

I did finally manage to get up in time to talk with the painters before they started this morning. But after that I just sat back down in bed, totally overwhelmed and exhausted at 8:30am in the morning. The list of things I have to do today seems really daunting. This morning I have to finish reading for the classes I have this afternoon. The reading includes a couple of cases and a few statutes, which you really have to be able to concentrate on to figure out what on earth they are about. Today is also my “long” day of classes, though I put “long” in quotation marks because it only seems long to me now – last semester I wouldn’t have blinked an eye at this schedule. My first class today goes from 1:00pm to 2:20pm, and is then immediately followed by a class from 2:30pm to 4:10pm. By the time I get to the end of the second class I am generally really stiff from sitting so long, my hands hurt too much to take appropriate notes, and my ability to concentrate has been almost totally lost. So it doesn’t help that I am behind in the reading in that class, so I haven’t been doing a good job following the last two lectures.

But I think if my day ended there I wouldn’t feel quite so overwhelmed. I can slog through those things, more or less. The problem is that I am expected to attend a Scholarship Recognition Reception this evening from 6:00pm to 8:00pm, to thank the Dean and the donor of my scholarship in person for funding me this year. Not only do I have to be there, but I also need to look presentable and interact with these people so that they believe they have made the right decision in awarding me the scholarship. I have to be at my best this afternoon, appearing the grateful and diligent student, at a time where I will almost certainly be feeling close to my worst.

I have no idea how I'm supposed to get through this day.

Changes

The good: This weekend APL (the boyfriend) and I took a totally spontaneous camping trip to Rocky Mountain National Park to see if the aspens had changed color yet. And we were not disappointed! The aspens were all honey golden and absolutely glowed in the sunlight. From afar, the aspen groves made the pine covered hillsides look like they were aflame. On Sunday morning, since I’m not currently able to hike, we drove up a single-track dirt road to the Alpine Visitor Center at 11,796 feet. The view was spectacular. And while we breathed the crisp, clean mountain air and stood in the wind-whipped sunshine, we watched a rainstorm drenching Denver far below us.

We were also lucky enough to see several herds of elk. And because the elk are in their mating season, we also got to hear them “bugle.” If you’ve never heard an elk bugle it’s a really difficult thing to describe. The male bugle is sort of like a cross between a high-pitched scream and a squeaky swing set. And the female’s response sounds like some sort of jungle bird. And they just open their mouths and scream out these weird sounds as loud as they can. Made me wish I could do the same thing – I bet it feels great! All in all, we really enjoyed ourselves.

The bad: Unfortunately, about twenty minutes into the ride home on Sunday afternoon, I realized that my body had run out of gas several hours before. I had been running on fumes, and there were no more fumes. I had totally gone past my tolerance for activity without even realizing it. Exhaustion hit me like a ton of bricks. And without glowing trees or gorgeous scenery to distract me the swelling, cramping, curling, aching, and throbbing in my joints magnified. It didn’t help that in our serious spontaneity I had forgotten to pack my prednisone, a medication that I am taking to help with the pain while we search for a treatment that works. I missed two doses this weekend, a mistake I obviously can’t afford to repeat in the future.

By the time we got home I felt physically destroyed and I dropped like a stone into bed. And, though I am honestly trying my best not to think about before, it turns out to be easier said than done. I lay there in bed, joints throbbing, head throbbing, fatigue smothering me, and I felt like “destroyed” might also be a good word to describe the changes in my abilities. I used to play several water polo games on the same day. I’ve been surf kayaking in Belize. I’ve hiked the half dome in Yosemite National Park. I survived being a 1L, or first year law student, and even managed to do well at it. But this weekend, two afternoons of driving around looking at pretty trees was too much for me to handle. It was a low feeling. A really low feeling.

The ok: This will probably sound a little hokey and hippie-tastic, but I joined this “Mindfulness Based Stress Reduction” group, and something our instructor said in class came to mind while I was lying there. She told us about seven “attitudinal foundations” that we should keep in mind to help us benefit from the group. One of them struck me the same way “try not to think about before” did; as really good advice that would probably be difficult to implement. The attitude was “non-judging.” The instructor encouraged us to become aware of the way we constantly judge ourselves and to try to step back from it.

I realized that I was judging myself for the physical limitations of my body, over which I have absolutely no control. So I tried to step back from it. Honestly, I can’t say that I was entirely successful. I still felt pretty frustrated and upset by how horrible I was feeling and how little it took to make me feel that way. But I did manage to calm myself down enough to remembered that I am supposed to be taking this one day at a time. And I do want to try to not judge myself for the changes that are happening to me. Though, I expect that it will also be easier said than done.

Still on the Staff

I went to a staff meeting today for the first time since my diagnosis, and I’m really glad that I did. I can’t say that I felt like my old self again, because that isn’t true and because I’m really trying not to think about before. But something about the meeting made me feel quite content. I joked and laughed and brainstormed with my co-workers. I provided insight on their projects and updates on mine. I may have considerably fewer responsibilities than I used to, but I realized today that I am still an important part of the research staff. I still have valuable talents to offer. I am still needed. And for the first time in what feels like forever, I felt like I recognized myself. I’m still in there, somewhere. I just have to figure out exactly where. But even that small realization was enough to make me feel like I found something today.

Try Not To Think About Before

If someone told you to try not to think about your life before this moment, would you know yourself?

It would mean you couldn’t base your identity on places you have lived or schools you have attended. You couldn’t figure out who you are based on things you have enjoyed doing. Past jobs, whether you loved or hated them, would have no weight. Talents you developed would have no meaning. Your relationships with people couldn’t shape you. Even goals you had set for yourself, ambitions you might have had, would be outside the scope of consideration. Would you know yourself? Without looking back, would you know how to go forward?

Try not to think about before.

I think those words are probably the most daunting advice I have ever been given. Not to mention potentially the most terrifying. And yet, at this point in my life, those words may also be the best advice.

I was recently diagnosed with rheumatoid arthritis (RA). RA is a chronic and systemic autoimmune disease. Basically, it means that my immune system has decided my own joints are the enemy and has started to attack them. Joints all over my body are inflamed and painful – from my fingers to my knees to my toes. RA is a chronic disease because it continues indefinitely and the symptoms may never go away. It’s a systemic disease because it can affect multiple parts and organs of my body. It’s also a progressive disease, meaning it keeps getting worse and can potentially cause total joint destruction and functional disability.

Apparently, RA is relatively common. Depending on the source anywhere from 1.3 million to 2.1 million people in the United States have RA. While it can affect anyone, including children, apparently the disease has a preference for women, as 70% of people with RA are women. Onset ordinarily occurs between 30 and 50 years of age, so at 25 I guess my body just thought it would get a head start. And RA is more than just a little joint pain. It can result in stiffness, muscle pain, joint destruction, and a substantial loss of functioning and mobility. People with RA often suffer from fatigue, weakness, loss of appetite, and depression.

To fully understand the impact that RA has had on my life, things that happened before this moment are relevant. I have always had an extremely active and busy life. In high school I made the varsity water polo team as a freshman and was the league MVP by senior year. I attended an Ivy League University, studied abroad in Japan and Australia, and graduated with honors. I’ve traveled to all fifty of the United States. And for the past two years I’ve been enrolled in a dual degree graduate program, pursuing a law degree and a masters in environmental policy. I’ve earned straight A’s in the graduate school and I’m in the top third of my law class. I’ve never had a C on a transcript in my life.

Last semester alone I did about three hundred things at the same time. I took 15 credits, which consisted of three law classes and two graduate classes. As a member of the law journal, I cite-checked and proofread several articles. I researched and wrote a 46-page award-winning student note that will be published in an upcoming edition of the journal. I also worked part time for an environmental research center, where I put out three editions of our bi-monthly e-newsletter: generating content, proofing articles, setting up the layout, and doing web design. I also worked as the events coordinator for the research center and organized three events last semester, each attended by more than 300 people. One of the events was a debate between Colorado’s congressional candidates. Then, just for fun, I became the only graduate student on the University’s women’s club water polo team.

This semester is a totally different story. It takes a great deal of effort just to get out of bed in the morning, and some days I feel like I’d rather not bother. I spent the first month of the semester totally avoiding people because I couldn’t handle answering the inevitable “how was your summer?” question. I’m only taking 10 credits but I already feel like I’m drowning. I’m so exhausted and the pain is so distracting that I’m having trouble keeping up with the reading or even paying attention through an entire class period. On Wednesdays I have 3.5 hours of class in a row and I have to go home and take a nap afterward. I quit the law journal. I gave up my job as events coordinator at the research center. I’m still working as the newsletter editor, but I’m only doing one issue this semester and I’m getting considerably more help with it.

The three blocks between my house and the bus stop often feel like too much for me to walk. My hands are already hurting from typing this post. My boyfriend and I have been wearing matching rings since 2005, but mine doesn’t fit on my swollen finger anymore so I have to wear it on a chain around my neck. One of my friends is helping out by hiking with my 1.5 year old puppy, because I can’t give the puppy the exercise she needs, but I can’t help feeling a twinge of regret every time the puppy seems happier to see my friend than me.

There is no known cure for RA. Treatments exist to slow the destruction of my joints and lessen my pain, but my rheumatologist says it may take months to identify the right one. And there isn’t an instruction manual for how on earth you are supposed to function in the meantime. So while I know my condition won’t always be as bad as it is this semester, I’ve also come to realize that RA is going to require me to substantially change the way I have been living my life.

However, that seems easier said than done. At least in part, the pieces of my life up to this moment have seemed to define me: the schools I attended, the grades I got, the things I was good at, the activities I enjoyed, and the goals and ambitions I had based on all of that. But no matter how hard I wish not to be true, a lot of those things just aren’t possible any more. At least, not in the way I thought they would be. I have to reevaluate all my choices. I have to find a new way. But if I keep thinking about all the things I feel like I have lost, I may literally drive myself crazy.

So, I’m going to try to take my life one day at a time. I’m going to try to figure out, step by step, what I really want and what is actually possible. I know that RA isn’t the end of the world. It isn’t life threatening and it could be a lot worse. But it could also be a lot better. And I have to figure out how to make it better. Even if my hands end up hurting from typing this blog, I think it might help me figure out how I’m supposed to get through all this.

I’m going to try not to think about before. From this point. Forward.