When I come out of full-crisis mode, especially one that lasted longer than usual, it’s always strange to make that transition from the few square meters that my life had been physically reduced to, back to the full outside world. (It’s even stranger to realize that even though my house is not very large, some parts of it actually fall too far out of reach during my worst flares.)
The hard part used to be the challenges associated with transitioning from walking without any mobility device whatsoever, to using a cane, to struggling to get around with crutches, to barely even being able to move at all. I’ve gotten used to this, though, and all of the strategizing that it entails. Two hands free, one hand free, no hands free…but at a certain point, it doesn’t even matter–because when my hands are unencumbered from supporting each and every one of my steps, they too have stopped working.
This past week I went through this whole process once again, just in reverse. Having a free hand to carry an umbrella as I walk along the sidewalk during a rain shower. Going to the grocery store and being able to purchase more than just what fits into my small, one zipper backpack. No longer having to look for a resting place for my cane or crutches, but having that nagging feeling that I’ve left something behind whenever I leave a building or step out of a taxi…these are just some of the different thoughts that I’ve dealt with over the past few days.
There is nothing quite so surreal, however, as once again experiencing that “first day”–the first day that I leave the house without a cane or a crutch. The knowledge that I am ready to do so, that shifting more weight back onto my left leg will actually make it stronger and will not result in more pain or damage…but also acknowledging the fear and hesitation associated with making this final leap. Thinking that my limp has finally become permanent, and then seeing it slowly fade away, and then yesterday (for the first time in more than two months) realizing that I am walking sans cane, crutch, or limp.
As the limits of my physical self continue to expand, I realize that during this past flare I was somehow able to prevent my emotional self from falling victim to this overwhelming shrinking effect that seemed to be taking over my entire world. As I recover from this most recent flare, my emotional self is not playing catch-up as it would have been doing in the past…instead, my emotional self is standing one step ahead, guiding my physical body as it once again continues to familiarize itself with its movements and its sensations.
I was such an active participant during the final two weeks of my flare, that I think I’ve kicked back and become more of a peaceful observer this past week. Left to its own devices, a body is an incredibly strong and intelligent thing. I took good care of my body over the past few weeks…now I’m letting it take good care of me.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“Let go of the tendency which we all have to want things to be different from how they are right now, and allow things to be exactly as you find them. Allow yourself to be exactly as you are.”
-Jon Kabat-Zinn, Guided Mindfulness Meditation
Quite often, when I am in a flare, I began to distance myself from the things that I really enjoy doing. When getting out of bed, grooming myself, and getting dressed sometimes equal “doing too much”, it’s easy to start crossing off items from my list of daily activities. Even some things that don’t require too much physical activity, such as reading, listening to music, and watching television, can sometimes require more concentration than I might have during the worst days of a flare.
But once I finally do start getting better, as I have been doing over the past few days (even though I am still only at the beginning of what will sure be a long recovery), I love to (oh so cautiously) add activities back into the fold. It’s a double-edge sword that must be approached carefully. I know that doing just a little bit more allows and encourages my body and mind to get closer to a place where it needs to be, but I’m also aware that doing too much too quickly will only increase my chances of relapse. (If this were Cirque du Soleil, I’d be limping along on the tightrope!)
Towards the end of this past December, when my rheumatoid arthritis started to have a larger-than-usual effect on how I was able to teach my college courses, I consoled myself with the knowledge that a six-week vacation was just around the corner. During the past few weeks, as my pain and disability continued to worsen, one of the aspects that I took comfort in was the fact that I did not have any professional responsibilities until the first week of February. The timing of this latest flare was working in my favor and I was enjoying my break, so I couldn’t complain too much…but I did start to miss the joys associated with teaching, learning from, and interacting with my students. As I began to emerge from my flare just a few days ago, even though I knew the coming weeks will continue to present certain challenges, I was once again looking forward to going back to work.
My return to the academic world actually arrived one week sooner than expected, and I couldn’t be happier!
This past Thursday, which was just my second day into a very slight improvement of my overall condition, I received a phone call from my university. The dean wanted to meet with me to discuss the possibility of me taking on some additional responsibilities in the coming academic year. (Oh, and the meeting had to be that same evening!) The first thought that passed through my head was that there was no way I could do so in the state that I found myself…but I asked for a few minutes to think things over.
I consulted with my physical therapist (who was actually at my house giving me ultrasound treatments at the time) and my husband. Both of them encouraged me to attend the meeting; they thought that it would be good for me to put my mind on something other than my illness, and that even though I needed to be careful it would be good for me to get out of the house. (The meeting place was not going to be on campus, but at a more accessible coffee shop closer to my house…the culture where I live is one where important discussions are often conducted outside of a formal business environment.) I called back and confirmed my attendance.
A few hours later I sat in the coffee shop, elated, as the dean described his plan for me to become more involved with a special graduate degree program that the university offers. My vision of the future was once again full of excitement and academic curiosity, and my feelings of hesitation and concern about my rheumatoid arthritis quickly began to fade away. He had been informed of my health situation, so we had a brief discussion about my rheumatoid arthritis and how I continue to learn to manage the limitations of my illness with my willingness and ability to teach. We finished our meeting with an agreement to move forward with the proposal. The timing of my new courses has not yet been formalized, but just this morning I did participate in the orientation/welcome meeting for the new graduate students.
I continue to give myself plenty of time to rest, and will continue to do so in the coming weeks, even after I return to work. I continue to give myself extra time to get ready in the morning, and pad my travel times between Point A and Point B. I move forward with a new found confidence in asking for special accommodations when I need them. I am not placing a deadline on this current period of healing. If my current state is actually my new normal, I’ll just continue to figure out how to incorporate it into my life.
I’m pulling myself forward, but I’m not pushing myself too hard. Even though I continue to experience considerable levels of pain, for the first time in the past few weeks (months?) I can finally say that I really do feel good…and I continue to learn that feeling good is about so much more than just the presence or absence of pain. Even though my rheumatoid arthritis will always be a big part of my life, there will always be room for so much more. Being reminded of this is such a wonderful feeling.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A Personal Story of Investigation and Hope for Those With Inflammation and Joint Pain
This blog is dedicated to my personal story and attempt to solve an undiagnosed and mysterious condition I have experienced over the last few years. I would like to welcome you to my nemesis: severe and chronic inflammation in one specific area of the body – the knees. My goal is to reach out to those who may also have similar conditions and provide them with information that I find or clues to an unsolved mystery. After numerous doctors, labs, tests and medicines, I’m convinced there must be a solution to this problem.
It’s a tightrope that Adam Mars-Jones, in his second novel narrated by John Cromer, clearly relishes walking. Pilcrow, the first instalment, brought us John as a small child, struck down by Still’s disease, a form of rheumatoid arthritis, and consequently confined to bed or wheelchair for vast swathes of time, kept company by his thoughts, his books and his mother. Cedilla, which is set in the late 1960s and early 70s, sees the teenage John escape from the bedroom, from the cosy stagnation of suburban Buckinghamshire and from the twin strangleholds of almost constant medical supervision and equally ubiquitous maternal attention. But that physical escape – variously attempted in his chair, on crutches or in his specially adapted Mini – must also vie with a determination to attain spiritual release, via a Hindu-inspired form of self-effacement at perilous odds with John’s wonderfully depicted narcissism.