Trapped In A Box, No Longer

Last night, I had one of my longest cries in a long time.

On Monday of this week, I called my doctor because my rheumatoid arthritis continues to worsen, even though two weeks ago we upped all of my medications and added a one-month Prednisone boost. One of the worst feelings in the world–even though I know that these meds often taken a while to produce the improvements that I’m looking for–is realizing that they are in fact not providing the help that they once used to. But this is not why I was crying.

As I wrote on Facebook last evening, I’m so far ahead of the game, on so many issues related to my rheumatoid arthritis. There is one thing that I’m still playing catch-up to, though, which is that fact that I am increasingly losing the use of my hands. My hands are in pure agony when they’re sitting still; wrapping them around the curvature of my computer mouse or trying to lift a cup of tea are becoming more and more of a challenge. I know that I need to start looking into more adaptive and assistive devices, both for my computer and for everyday tasks around the house. I also know that I am quite capable of making these adjustments, no matter how scary they may appear at the moment. Once again, though, this is not why I was crying.

My left leg is again randomly pulling itself into a huge knot. (This once happened while I was at PT, and my physical therapist flipped out…she had never seen anything like it!) In order to sleep I have to wrap a heating pad around it, in a last-ditch attempt to try to loosen some of the muscles. Of course, this doesn’t stop me from still waking up screaming, because–you’ve got it–my left leg decides it wants to look like a tangled-up slinky toy. (Just like “pain” doesn’t accurately describe what we live with, neither does “cramp” even begin to describe what is going on in my limbs at the moment.) Even as I was simultaneously experiencing all of these issues last night, and as it felt like my entire musculoskeletal system was crumbling to dust, I continued to ask myself why I was crying. All of the pain, spasms, cramps (whatever you want to call them) were still not the reason why I was crying.

I continued to look for an answer. Why exactly was I crying so much?

And then it came to me. I was crying because, at a certain point, the pain and the disability just feel like a box that is being erected around me, isolating me not only from the rest of the world, but also trying to isolate me from my own thoughts and my own body…and while for anyone else this box may be completely imaginary, for me there are many times when it becomes all to real. It is my mind’s way of trying to understand what is means to have no control over what is happening to my body; it is for the hundredth-, if not thousandth-, time once again experiencing the shock of not being able to move all or part of my body.

I reminded myself, though, that even if I feel like I’m trapped inside of a box, there is still a lot that I can do. I can–and must–punch holes in this box; doing so not only allows the light in, but is also lets everyone else see what is happening to me.

I’m not a victim, and I don’t want sympathy…but I *do* want people to see what it means to live with rheumatoid arthritis.

When I was a graduate architecture student at Harvard–almost a decade before RA entered into my life–I was completely fascinated with the concept of accessible design; where things such as ramps are an integral part of a building’s design and not just items that are added in order to meet accessibility requirements. I was so interested in this idea that I decided to make it the basis of my graduate thesis, and applied it to the design of a museum for prosthetic devices. I was excited by the thought of displaying these objects of beauty and design–both historical and modern–in the context of an “art” museum. (Eyeglasses, hearing aids, wheelchairs, artifical limbs, crutches, and the list went on and on…)

My excitement, however, left me completely unprepared for some of the comments I received during my thesis review, along the lines of I was showing things that were “supposed” to be hidden. I forgot some of the exact words that were used to describe my project, but I do know that they were not encouraging…and while much of the feedback had nothing to do with the actual design and execution of my project, it had everything to do with my basic concept. According to some on the panel, what I was doing was just plain wrong.

These words have stuck with me ever since, even more so now that I am disabled. (Who would have guessed that this entire issue would become much more personal than I could have ever imagined?) As I’ve gone through the many years of living with chronic pain and disability, though, I’ve made it more of a point than ever to not hide what is happening to my body.

I am not hiding it from others. Most importantly, I am not hiding it from myself. I am punching holes in the omnipresent box that surrounds me.

Which leads me to the present. Show Us Your Hands!, an international awareness movement that serves to unite and inspire people who live with inflammatory arthritis. Over the past few months, as this project has moved from its initial community collage to the nonprofit charity organization that it will soon become, I’ve heard some of the same echoes that I heard many years ago, back when I was a design student. “You’re not supposed to be showing things like this.” (Our hands.) “This is an aspect of our diseases that should remain hidden.” (Shame and stigma.)

Luckily, I am not alone in this challenge. We are all punching holes in the boxes that surround us. We are showing the world our lives, and we are showing the world our hands. We no longer hide.

As someone so eloquently stated in response to the Show Us Your Hands! Community Survey, “Show Us Your Hands! has created a unifying voice for those suffering from inflammatory arthritis, and provided a way for each of us to become advocates and to spread awareness. I am inspired to see that others are able to cope and remain positive.”

Or, “Normally I would not show my hands, in fact the opposite, I tend to hide them away as I sometimes get an adverse reaction from some people. This is an opportunity to say….This is me! I have to live with these hands! My hands show a journey of pain and survival!”

Let’s work together to continue to punch holes in the boxes that surround us, so that one day, such boxes will no longer even exist in the first place. Where instead of feeling trapped and isolated by our diseases, we can instead share our lives and share our challenges in order to unite and inspire one another.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

21 Comments
21 comments
  1. Tabatha Loving-Yager says:

    Again…so eloquently written. I am so sorry that you feel you are in a box, but I do understand. I feel I am placing myself in a box, unintentionally of course, but still doing it. I don’t want this disease, I don’t want FMS, I don’t want everything that goes with both…but damnit I have them! I just have to try to stop placing myself in that box and keep moving forward. Because that IS what it is all about, right? Keep moving forward… or just keep moving at all…

  2. Patty Molinaro says:

    I think you could send this blog post to the professors who reviewed your dissertation! (just for their education)

  3. Linda P. says:

    One thing that many people may not understand about RA is that we don’t make a single accommodation mentally and physically to our illness: it’s a series of accommodations that may be forced upon us at any time. We may have come to terms with the reality of our illness only to have the ground shift under our feet again. I wish this illness had let up for you, let you breathe into the new reality for a while before you were slammed again. Know that you’re making a tremendous difference in removing that shame, in building a community that removes some of the isolation.

  4. Linda P. says:

    Oh, and in case my previous comment sounded impossibly bleak, we know from examples and personal experience that the illness can shift in the other direction, too. I’m personally experiencing a revival of sorts after a change in medication and the arrival of a cooler season here in torrid Central Texas. I know it may not be forever, but I’ve learned from this illness to enjoy the now, whether that now temporarily returns the ability to rise up from my bed and take walks, work on my novel, and play games with my grandchildren, or whether it means I lie in bed becoming more knowledgeable about foreign film than I ever thought I’d have time to do.

  5. Lana says:

    For a long I have wondered whether the issue resolves around us hiding our disabilities, or the world not accepting disabilities and chronic illness. Over time, it seems like we are trying to live in a politically correct world, one that fears ridicule for recognizing disability. You would think that in 2012 when people are making strides to overcome disability that society could get pass the stigma or feeling the need to be politically correct. I think your thesis idea was an amazing idea and I kind of feel that the negative feedback had to do more with society’s expectations rather than it being a bad idea. Why should it be left up to people who are struggling daily to prove their case? But at the same token, if we do not speak out and punch those holes, no one is going to hear us. When I was diagnosed over four years, I was told to prepare myself for disability and I keep fighting everyday to delay the inevitable. That is all any of us can. You inspire so many and when it seems like you have nothing left in you, you still keep going. You have been MY inspiration from day one and I am proud to read your reads and I proud that I meet you (although not in real life). Discovering your blog and reading your posts reminds me daily that my life is not over unless I say it is over. You have dealt with so much and you continue to inspire daily – you are stronger and wiser than any real life or made of superhero out there. You are the real deal.

  6. Carla says:

    I am so sorry for the progression of the disease and its effects on you. I continue to be amazed at your abiliy to share these thoughts and feelings with the rest of us. Sending you warm wishes for both some relief from your symptoms and the continued success of the “Hands” project.

  7. fridawrites says:

    Hugs! Painless and pressureless hugs.

    Throwing out a few ideas in case any make you say, “Yes, I need that!”:
    -For hands–Dragon software if you’re not using it. Can take a while to train it. Typing is the bane of my existence.
    -Can use very small half-size mugs like these; much easier on hands and can leave them in reach on counter: http://www.worldmarket.com/product/multicolor-stacking-mugs-or-espresso-cups-sets-of-6.do?camp=ppc:GooglePLA:none:goobase_filler&gclid=CMDXpdzusLMCFUeRP
    -If you find a mouse solution, I want to know! Using a travel-sized wireless mouse helps me, but not enough.
    -Microwaveable lavender hand mitts or “hot hands” (for camping) that fit in gloves

  8. fridawrites says:

    As I just started a prednisone regimen, I just remembered that prednisone also makes people more teary. Not that you wouldn’t feel upset anyway–it just magnifies a issue or brings it to immediate attention so that it doesn’t just simmer on the back burner.

  9. Ms. Rants says:

    By writing about your experiences, I think you’re punching some holes in the box. At least, that’s how I feel when I write about my experiences. Like you said, even within the community people try to hide. I feel that opening up the discussion, including all of the good, bad, and whatever else, really can make a difference for all of us. Thanks for your contribution to the box-hole-punching :)

  10. Annette says:

    I use a child size mouse that I bought online. Much easier and lighter for my hands. And I hate to admit it but 10 years ago I ended up with a plastic thermal mug from a long term care home. It is lighter than regular mugs.

    My hands are not represented on “Show Us Your Hands” though my friend Gilly’s are. I don’t go out of my way to show them to newly diagnosed people so it doesn’t make them anxious. With better treatments now it is less common to have the obvious hand problems. I have a “classic” swan neck but my silver ring splint lessens it.

    I hope that your medications take effect soon.

  11. Cheri says:

    Thank you so much for sharing your experience and feelings. You express yourself beautifully. I too have been greeted and enveloped by the mysterious and monsterous RA. You have my love and prayers as all of us are connected and isn’t it strange that we share the same isolation. Thanks again for reaching out in the midst of your pain.

  12. Linda says:

    I hope that you will someday RE-present your Thesis to those people for re-consideration as I bet it would be approved this time around. Not sure what was going on in their minds back then but hopefully they have become enlightened over the years. I rather liked your idea!

    Your site on Facebook and your blog are an inspiration for us all! You are providing information and an education to the ones who don’t understand.

    I have R.A. and while knowing the path before me is unpredictable, I am ready and willing to continue on this journey and I remain ever hopeful that a cure will be found for this disease!

  13. Alice C. Jones says:

    You are definitely not alone. Either in your experience of your CI or your professors. Obviously your professors at Harvard are not as enlightened as they would consider themselves to be. Your idea is a magnificient one and at some time in the future “your” museum will be a reality. I have made as graceful an exit from the world of “pretend” as I possibly can. Much to the chagrin of my family members and others who prefer to look away from “reality”. So…I tend to challenge others all the time with my reality. I make it clear I am reporting not complaining. They sometimes just look at me because they don’t know what to say. We are blessed in some ways. We force people to consider the healing power of kindness. I am not good at “chit chat”. I prefer, always, to discuss the reality of my everyday life and the reality of yours. Thank you for sharing. You help me keep my life in perspective…as does Annette. :)

  14. Connie says:

    I just recently started following your blog. I also just recently decided I was tired of hiding my pain from others, especially those who “care” about me. I wanted to tell you I appreciate your thoughts and courage. It makes a difference to people like me.

    Connie

  15. Kathleen says:

    Thank you for your insight. Bless you, me and all others who have these challenges. You speak so well. Not just for yourself, but for me as well.

  16. Libby Schou-Kristensen says:

    Your letter touched my heart and reminded me of how I have described myself. At the end of my book,’Seeing the Unseen’, I concluded with this poem:

    A little bird I am,
    Shut from the fields of air,
    And in my cage I sit and sing
    To Him who placed me there;
    Well pleased a prisoner to be,
    Because My God,
    It pleases thee.

    My cage confines me round,
    Freely I cannot fly,
    But though my wings
    are closely bound,
    My soul is at liberty;
    For prison walls cannot control
    the flight or freedom of the soul.

    I ended my book with these words:
    One of these days I will be as free as an eagle! It may happen today or it may happen on the day that my earthly ‘tent’is discarded. Whichever way, it is in the Lord’s capable hands.

    “But those who wait on the Lord, shall renew their strength;
    They shall mount up with wings like eagles…” (Isaiah 40:31a)

    Those of us who feel trapped in boxes and cages have one huge advantage. The restrictions and inactivity give us the opportunity many busy people never discover – the opportunity to look BEYOND the physical, seen word to the spiritual, unseen world. This life is sooo short, a mere dot, when compared with eternity. My encouragement to all who suffer is to look up. God may seem distant but that is not true. He is as close to you as your next breath. Jesus is the best friend you will ever have. He understands suffering like no other. He died so that you might have abundant life.

    In a week or two both my books,’Seeing the Unseen’ and ‘Water for the Soul’ will be available as e-books on Amazon. I hope they will be life-changing for those who download them.

    Hang in there, RA Guy, the pain will pass. I am praying for your healing.

    Blessings from Libby

  17. abcsofra says:

    (((HUGS))). Everyone has pretty much said what I was thinking. Pregnisone will make you very emotional, try Dragon Speak but it does take some time to “Train your Dragon” :-) and the muscle cramps can be caused by alot of things. Do check into your meds and medicine net has pretty good coverage on muscle cramps and causes. Vitamin deficiency can also be a cause. They can be horrific to deal with. I am just so sorry to hear you are being trapped in that terrible box we all know so well. Just so very sorry…

  18. Jaana Vähäsalo says:

    Hi! First of all,thank you <3
    Thank you so much for sharing your experience and feelings. You express yourself beautifully.
    As you sed Ra is a " friend" that makes your life so small, and it makes you feel like you are in the box.I have thoughs similary as you and I do understan what you go trough.My seropositive RA makes my life difficult and is it not my only illness.Im 55 years old and I have to say, you are somethin,very beautiful brave young woman <3 Lots of greetings and loving wishes from Finland <3

  19. Loretta Tweed says:

    I loved this!
    It’s like we wear a “Mask”…
    I don’t want to do that anymore.
    I hurt, and sometimes I Cry…actually “Bawl”…like a Baby!
    I am Strong, and Courageous, but I am Human, you are, we ALL are!
    Love your honesty and candour.
    If it’s not my feet it’s my hands.
    I explain it like having something that just does not want to co-operate usually at the most inopportune times.
    Functioning becomes like running a marathon and I ONLY WANTED TO GET TO THE BATHROOM, OF COURSE IT SEEMS LIKE IT IS HALF-WAY ACROSS THE WORLD INSTEAD OF ACROSS THE HALL.
    Sorry about the caps wasn’t intentional!…;)…See mind of their own!!!
    I am having trouble closing mine.
    My dad wants me to write to him, I can barely sign my name!

  20. Della says:

    My husband has recently been diagnosed with RA. It seems to have come on with a vengeance. His ankles and wrists are the worst joints, but his stomach hurts so bad he has went to ER 3 times in April (before he learned in early May that he has RA) and 2 times since. There is nothing they can do, yet I take him because I can’t do anything about his RA myself – but pray. He also has acid reflux and won’t listen to the Drs about not laying down right after eating. What can I do but pray! Your statements were wonderfully written. Thank you. Della

  21. vickie greenhill says:

    My hands are pretty knarlly, but iam making plans to add my hands to picture and for the cause. I never think about my hands unless they are hurting or someone mentions them. We RA people are tough. We hhave to be.

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