Sunday, July 24, 2016


     One of the most difficult parts of flaring is the lack of understanding that surrounds JRA and being sick in general. Of course, these misunderstandings are not typically laced with malice; most people genuinely do not understand the toll living with chronic pain takes on one's body and one's mind, and while this innocent ignorance is enormously frustrating, it is also unavoidable. Figuring out the complexities of chronic illness takes up a whole lot of energy, and everyone ends up exhausted. I'm tired, my friends are tired, and I'm sure when my rheumatologist hears about this he will be tired as well. None of us know what to do with my knees or my elbows or my heartache, and we just keep trying different drugs and words but none of them seem to permeate the pain. Some people stay close by, some people distance themselves and put up walls. While I always advocate for the former, I fall into the latter category at an embarrassingly frequent rate, which only leads to further isolation. I wish I could distance myself from myself, but unfortunately that is not how all of this works. 

      A concept I have pondered relentlessly since my diagnosis is that of "tomorrow." It can be such an intimidating word, but it can also be brimming over with hope, like hot chocolate on a chilly day that refuses to be confined by the ceramic walls of a mug. Sometimes when I flare, all I can think about is the next day. Will it be better? Will it be worse? Will I be able to move around? Will I have to cancel my plans? Will my friends understand or be frustrated or both? Will my parents wish that they still had yesterday's kid? 

     When you're living with a chronic illness, "tomorrow" is one of the most intimidating words in the English language. It stalks its victims throughout the day, creating fear and worry. I would like to assure you that I have completely escaped from its chains and have come out the other side a hero, but that simply would not be true. I spend a significant portion of my time during flare days thinking about tomorrow until I am inevitably distracted by something way more interesting and productive. 

     Needless to say, I occasionally find myself desperate for some encouragement in the dark pit that might await me the next day. So I decided a few months ago that when "tomorrow" creeps up behind me, I will respond with a question stronger than any of the questions above. 

How can I love people more tomorrow than I did today?

   (Disclaimer: This form of the question works best at night. In the morning the question, "How can I love people more today than I did yesterday?" is a better fit. Two versions, same thing.) 

     I have extremely limited control over whether I will feel better tomorrow. The most I can do is sleep and strap some ice packs to my body. Even as I am writing this, I have no clue how I will feel when I wake up tomorrow. It is terrifying. Living like this is frightening and it seems like no one really gets it. But I know that no matter how big or how small the challenges of tomorrow turn out to be, there can still be love. 

     Even when I kind of felt like the world was falling apart earlier this week in the midst of all of the pain, a Southwest flight attendant and a Disney cast member assured me that there are still plenty of people committed to a lifestyle of conscious tomorrows. There are still people who actively seek to understand rather than to judge and who believe the experiences of sick people without needing a thousand doctor's notes or medical forms. These strangers loved me as I vomited in the back of a plane and requested a ride modification for an invisible condition. These strangers saw me only at my worst, yet instead of shunning me they drew me in and made me feel at home. These strangers are people I want to be like. These women are people who are committed to loving others more tomorrow than they did today. Sometimes during flares strangers feel like friends and friends feel like strangers. Maybe they are all one in the same. 

      Tomorrow seems awful at the moment, because I do not foresee a fast turnaround as far as the condition of my joints and I already know that my day will consist of doctors and shots and packing. But I also have plans to tell people that I love them, in words and in actions, even if it must be done from a distance. I'm sure there will be tears at the allergist's office and tears at home and tears while I'm watching Grey's Anatomy for the bazillionth time. Flares are hard. But flares are no excuse to waste time. Who knows how many tomorrows any of us have left to love each other? Who knows whose life will be changed by a pinch of generosity? Who knows how many tomorrows we will someday regret? Tomorrow is a new day. It can be full of the status quo, or it can be a hot chocolate mug of love and hope. How will you love people more tomorrow than you did today?

     Don't throw tomorrow away. 

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