Category: dear arthur

Day 6: Dear Arthur #HAWMC

Posted on by Grayson

[In case you’re not familiar with my blog, I’ve had a rare form of juvenile arthritis since age 5. Arthur has been my nickname for him ever since the diagnosis.]

Hey Arthur,

Last time I wrote to you, it was ‘celebrating’ your birthday. I was thankful to you for the people you allowed me to meet and befriend, and proud of myself for all I’ve accomplished in spite of you. A month later, you managed to murder, with the help of idiot doctors, one of the most beautiful, kindest women I have ever had the chance to know. You robbed her of her wedding day, the love of her life, and the friends and family who loved her so.

How dare you.

How dare you take her away from us. She provided support and understanding that no one else I know can. She loved unconditionally, cared even if someone’s pain may have been lesser than her own, and was always there for each person she knew. How dare you force Matt and his sweet family to handle her death when they should be picking out flowers and a venue for the wedding.

We were in the same place in life – sick, engaged, blogging, and pondering the children issue. She was the twin I never met, in every sense. Planning a wedding together was our goal. We were going to share ideas and help each other not freak out. When I bought my dress, a time when any girl would be emotional, I cried not because of the joy of finding the dress but the sadness that I could not share that moment with her. My instinct was to send her a picture right away, but I know I can’t and it just breaks my heart. I can’t even think of getting ready for my wedding without her to talk to.

It has been four months now since you took her from us. I find myself even more than before struggling with the idea of a life after death, not because I suddenly believe in a god but because I don’t want to believe that she’s not around anymore and I don’t want to believe that I would be permanently gone from my fiance either should something happen. I’ve always thought many religions were a way to explain what we don’t understand or don’t want to think is true, and it’s very hard for me to want to go against all my reason to believe Laura is still around somewhere waiting to welcome us to a land with no pain.

Arthur, you are so lucky you’re not a real person because the hurt I want to inflict on you is indescribable. I know so many little kids with this, and I can’t help but thinking how scared I am for them now having known someone so wonderful lost because of you and idiot doctors. There are a lot of idiot doctors, especially when it comes to you.

One of the things that Laura taught me was how to come to really understand my body and not push it further into a flare-up. She encouraged me to get in the pool with my PT ladies and take back my body. Because of her, I am able to run now – not even close to a mile a day, but it’s getting there. I run because it makes me happy, because it challenges you, because she would be proud of every step.

I thought I was determined back in November to beat you, but there is no way to put into words how much fight I have in me now. You will not win. You will not take me from my family and friends. You sure as hell aren’t going to make me take anything you dish out lying down anymore. I refuse.

Happy birthday Arthur!

Posted on by Grayson
Dear Arthur,
Can your birthday really be happy?
19 years ago today, you gave me my first sick day. You popped up with rash, with fatigue, with swelling. I didn’t even know it was you at first. You’re good at disguises. I thought you were someone else, someone acutely frightening but no less scary in reality than you.
Over the last 19 years, you have made me miss numerous things from most of elementary school due to having to be homeschooled to stopping grad school early to my niece’s blessing… though to be fair, I’m not sure if that was you or Phoebe Fibro. I’m pretty sure you invited her though and you’re responsible for your house guests.
You have caused me immense pain that I can’t even explain. You’ve attacked my eyes, my lungs, my heart. You’ve forced me to buy a cane and to have more ace bandages than a middle school nurse’s office. I don’t wear shoes that support my feet well often, because you swell up and make it impossible. I fall asleep at random times. I have gained weight because of being on steroids for two years and not really being able to work out because, again, of you. I’ve gone severely depressed and contemplated suicide from a very young age because I knew the things you would do, you could do to my body. You have forced me to stop eating due to tummy pains, to limit what food I can eat, and to altogether literally get sick all over like you did Monday. You make me writhe in pain, not be able to sleep, and wish that I was anyone else but me.
But you know what Arthur?
Despite all the things you have done to me, I graduated high school with honors and with an international baccalaureate degree. I started college as a sophomore and there I met the love of my life. I went from being afraid to go and be a part of the world to late night visits to diners with friends, hiking, and going on vacations hundreds and thousands of miles away. I have learned to live in spite of you, to prove a point to you that you seem too daft to get – you are Arthur. You are a part of my body, but you are NOT a part of me. You will NEVER be. I refuse to let you limit me more than you clearly have the power to. I will not live my life focusing on the things you are capable of, because life is both too short and too long to live like that. I refuse to do that, to put my future husband or my sister or my niece through that. I will take care of myself, but I will not allow you to run my life.
So happy birthday you bastard.
PS: If I had a dick, this is where I’d tell you to suck it.

A Letter to Arthur on World Arthritis Day

Posted on by Grayson

Dear Arthur,

There was one point in my life where I was fine to have you. For some reason, I thought that other kids didn’t have to deal with you, that our relationship was exclusive. I thought this despite my sister also knowing you very well because she doesn’t complain a lot and I hope that means she’s not as sick. Still, just for the pain I’ve watched her go through because of you… if you were a person, you’d be dead meat you bastard.

As I grew up though, I learned that you have hit 300,000 children in the United States. I also learned that specifically 10% of those are kids like I was, sick systemically. I now know toddlers who are dealing with you, practically babies. How dare you. They are so much more vulnerable to depression issues, disfigurement, even death. Again, if you were a person, I’d seriously fuck you up.

You’ve legitimately scared the shit out of me and my family on several occasions. Remember when you had me so sick they thought I had leukemia and was going to die within six weeks? Remember getting blood drawn every fucking day to try to figure out who you were? I remember too, trust me.

But I have also seen the miracles that drugs can do in the fight to end you. I have seen parents of little girls scared so badly that their daughters would lose their sight to you cry. But I have seen them beat you, to take back their eyesight just like I once had to do.

In the last year, I have watched you ruin relationships between people who really do love each other but can’t take you as a damn third wheel. I have watched you break up families and cause people to just stop talking about their pain because no one understands that it isn’t all in patient’s heads.

But I have also seen the dedication that my sweet fiance has to me in spite of you or because of you. I have been crying myself to sleep because of you and the havoc you reek on my body, only to be comforted by him. I’m stuck with you for the rest of my life, but I choose him.

The last year has been incredibly tough because of you. I failed a few medications and had nasty reactions to others. I had several infections, one of which is like the top killer of people in the hospital. I have had to stop graduate school – something that as a high school valedictorian type just infuriates me. I have been so depressed that I thought many times about ending my life. You have caused me so much pain I didn’t want to breathe anymore. For months, I had a hard time even walking the little bit one must. I had to give in and buy a cane. I had to admit that you, you fucking asshole, were really here and not ever going away. And seemingly like my rash you are just always there. UGH.

But I’ve also done amazing things. I performed two weddings as an officiant, one of them being my sweet sister’s. I walked one 5k and failed to finish another. I have restarted relationships that were tough for me because of you and I’ve cut unnecessary people out of my life. I have climbed around civil war battlefields and towers and hiked around on rocks. I have spoken up about pain you cause and pain you don’t cause to try to get it taken care of. I have become so much more of an advocate than I ever thought I would. I have seen one of my favorite bands play in person, and heard Hugh Laurie’s beautiful voice belt out old blues songs. I made friends because of you and your pain. And best of all, I said yes to marrying my best friend… and consequently spend the bulk of my computer time on pinterest looking at wedding ideas.

The point of this letter is to tell you that I hate your fucking guts, but that I also hate you so much that instead of wallowing in my hate I am going to go for the critical strike points. That’s right Arthur, it’s time for a blow to the balls.

And that is what World Arthritis Day is about – raising awareness and supporting research for a cure to end you. And we aren’t going to stop, we aren’t going to rest until you are over. Just remember that next time you try to fuck up my day.

Arthur, the boyfriend nobody wants

Posted on by Grayson

I have a habit of calling my disease “Arthur” and though I’m not sure how exactly it started, I know I’m not alone. Several of us use the same term to describe our life partner, the ever-asshole-ish RAD/AA.

Here are some of the least favorite things about Arthur:

  • He’s not sexy
  • Always sleeps in late
  • Doesn’t listen
  • He’s needy
  • Ruins the best times
  • Doesn’t let you have any fun
  • He feeds you fat food
  • He always wants to cause a scene
  • Plays with your emotions
  • Controlling
  • Hates your other boyfriend
  • Is way too attached to that couch
  • Always looking for ways to get you into bed

Feel free to share your least favorite things about your boyfriend, Arthur!

Some of us even feel so strongly about our painful lover that we can’t even put it into words. I will say this though, if he existed, I would have gunned him down mafia-style YEARS ago.

Essentially, living with autoimmune arthritis is like starring in your own Lifetime special. Your abusive boyfriend won’t let you do anything without hurting you, and you’re trying to slowly kill him with a medical cocktail you’re putting in all the food – poisoning yourself while you’re at it. If you’re lucky, you’ll have built up an immunity to things like iocane powder… and if you’re not so lucky, the poison will get you too.
I know one thing though – this girl is ready to beat the crap out of Arthur. Who’s with me?