Earlier this year, I was in complete crisis mode. Not only was my physical condition rapidly deteriorating–so much so that I started having serious vision problems in addition to my chronic pain and mobility issues–but my emotional state was almost a complete wreck. (I say “almost,” because I would later learn that I would fall more than I ever thought imaginable.)
I decided to ask for help. Even though I was uninsured and unemployed, as I have been for years, I decided to take control of my situation, and to look for a way to gain access to some of the newer–and very expensive–biological therapy treatments for rheumatoid arthritis. I asked readers of this blog to submit reference letters (thanks again to all who did!), I asked medical institutions for financial assistance, I asked family members for money, and I asked friends if they would open up their apartments to me, so that I could stay in New York City for a few months to explore options. Against all odds, I arrived at the lower tip of Manhattan in the middle of March, on a frigid winter morning.
Things were looking up.
Within the next couple of weeks, however, everything started to spin out of control–not only with my body and mind, but also with my life. The doctor who was assigned my case made it clear from day one that he had no interest in helping me (going so far as to, on a follow-up visit, walk out on me and my friend). My long-term Prednisone use had already made me lose the ability to control my thoughts (and was without a doubt heightening my depression), but every attempt to lower my dose–even in very small amounts–made my body go haywire. To make matters even worse, I woke up one day to find that all of the money in my bank account was gone. (With the help of family members, I had budgeted what I’d need to cover my personal expenses…but as soon as this money was transferred into my account, it was taken back out–garnished by the State of California for back taxes.)
The next day, I told my best friend from college–who stood by my side so many times during those months that I was in New York City–that I could not do it anymore. I told her that I was afraid that I was going to kill myself. She tried using her trademark humor (one of the things I love most about her) to cheer me up, but I wasn’t having any of it. I was done. Finito.
She did ultimately convince me, though, to keep on trying. I haven’t worked through all of the challenges I’ve worked through in the past to give up now, I told myself. I had to keep moving forward.
I decided that I would start walking every day, even if it was just for a few minutes. I told myself that I would get to know the city (and the buildings, and the grid, and the urban design) that I fell in love with twenty years ago, when I was a young college student at Columbia University. Even though the crowded sidewalks were absolutely frightening (and the subway system even more so) for a person like myself, who could barely move with the aid of crutches, I made a point to start moving more. I would get through this…I didn’t know how just yet, but at least I was–once again–moving in the right direction.
My physical condition continued to worsen. I was growing pallid. I was constantly shaking. I was sweating through multiple layers of clothes, 24/7. The ‘experts,’ who previously denied that my medicines (methotrexate and prednisone) could be causing such problems, were now accusing me of taking illegal drugs. (You know your world has turned upside down when complete strangers in New York City show more concern than the doctors; right around this time, a guy who I didn’t even know turned to me, as I struggled to walk down the sidewalk, and told me: Hang in there, buddy–everything is going to be okay.)
I had already stepped away from my blog, and from my volunteer work with Show Us Your Hands!, to focus solely on myself…but things still continued to deteriorate. There was very little food that my body could handle, I started developing extreme sensitivities to smells and anything that came in contact with my skin, and the frequency and length of my episodes of blurred vision continued to increase.
One weekend, concerned family members suggested that I travel to California, so that I could take a break from the hustle and bustle of NYC, and from my constant medical appointments that seemed to be leading me further from, and not closer to, the truth. I agreed that I would get on a flight the next day–right after my morning medical appointment, that was.
The next day, I texted friends and family members to let them know that I would not be going to San Francisco, as planned.
What I *didn’t* tell them was that when I woke up that morning, I felt like I no longer had anything left inside of me. I was empty. I was finished. As I had told my best friend a few weeks earlier, I could in fact no longer do this. I was going to find my out, and I was going to find it that very same day.
As I walked to the subway station, thinking about specific details of how to do something that I hope to never have to think about again, I felt my phone vibrating. It was my husband. He had just received my text, and wanted to know why I was cancelling my trip. I’ll go another day, I told him. And even though I didn’t tell him what was on my mind, I think he knew, because he told me that I needed to immediately go to the airport and catch the next flight out.
I ended up listening to what he told me, instead of listening to what I was telling myself. I sat in seat 37F (last row middle seat) for the next few hours, and started to marvel at the beauty of being alive, even with the constant challenges that I face. The next day I walked on the beach and breathed in the fresh Pacific air. I told myself that I had reached rock bottom, and needed to declare as much. I knew that I still had a long uphill climb in front of me, but I also knew that everything was going to be okay.
I was right.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Earlier this week, I met my former yoga instructor (now friend) for coffee. She asked me if I was still practicing yoga, and I said yes–but that I was doing it on my own, not in a group, and that I was not following any formal routines or strict series of poses. Instead, I now pay attention to what my body needs at any given moment, and use that as the basis for my ‘spontaneous’ workouts. If my body can do something, I do it. If my body can’t do something, I don’t do it (because I know that attempting to do so will only bring physical harm). I have fun with what I do, and I love the fact that every one of my ‘workouts’ is unique.
What I was describing, she told me, was the true essence of yoga–and she was very happy that I not only found it for myself, but that I continue to use it to improve my life and to keep on moving, despite the ever-present pain and disability.
When I talk about the fact that I now exercise on a regular basis, through alternate days of walking and yoga, I often receive angry messages from readers. These people tell me that it is not possible for someone with severe RA to exercise the way I do, hence I must either have non-severe RA (whatever that means, I don’t know) or that I must not have RA at all. Some go even further, and accuse me of being irresponsible for communicating my message that yes I am a person who lives with rheumatoid arthritis, and that yes I still continue to exercise!
But maybe this last piece is the part they understand the least. You see, I really don’t see what I’m doing as exercise. I see it as moving. And I see it as continuing to do everything within my control to keep on moving–because I know exactly what it feels like to not be able to move.
Case in point: I have been living with severe muscle contractures in my back for the past few years. This means that my back muscles are in a constant state of tension, i.e. they are both losing their elasticity and starting to shorten. Last year both my rheumatologist and my physical therapist told me that there was no pill or injection that could counteract what was going on in my back, and that the only way for me to be able to keep on moving was to, well, figure out a way to keep on moving. More specifically, I had to start doing range of motion and strengthening exercises for my back.
And yes, the thought of moving something that hurt so much seemed–at the time–completely illogical. My back screams out in excruciating pain when I move it, and you’re telling me that the only answer is to move it more? I have since found out for myself that yes, moving it more is indeed the right answer. (And this, from someone who had to undergo months of physical therapy treatments where electrical currents were used to perform the initial stretching of my back muscles–to call these sessions torture is not an understatement–so that I could then try to maintain such flexibility on my own.)
After months and years of working on this one specific part of my body, I have reached a point where I am now able to move my back with much more ease…but the trick is, I have to continue to do my range of motion and strengthening exercises…all…the…time…so much so that if I go more than 48 hours without working on my back, it starts to seize up. (Hence, my alternating days of yoga practice that I mention above.)
What about my walking? I’ve made no secret of the fact that over the past half year, I’ve started walking long distances on a very regular basis. Again, some people take this as a sign that I don’t have RA, or that I am in remission (both statements are untrue). I still continue to have significant pain in my toes, ankles, knees, and hips–this remains unchanged. But I have also considerably strengthened my legs, and this counts for a lot. Most importantly, it allows me to not have to use my cane and crutches as frequently as I once did, which in turn greatly reduces the load that my continually-weakening hands have to bear. (The eternal Catch 22 of RA: you need crutches in order to walk, but you need strength in your hands/arms in order to be able to use crutches.)
Twice already I have come back from the verge of being almost completely crippled, to regaining my mobility. This doesn’t mean that my pain has gone away, or that it doesn’t hurt to move. It only means that I know where my body is on a day-to-day basis, and I also know that if I don’t continue moving each and every day–as much as I possibly can–that this disease will very quickly get the best of me.
For me, it has nothing to do with exercise, and everything to do with movement (if that makes any sense). So much so, that I regard both my walking and my yoga as moving meditations. I light a candle and some incense if I am indoors, or listen to some relaxing music if I am outdoors. Most importantly, I focus on each and every breath, and on each and every movement. I prove to myself that even though my brain is continually sending me signals to not move (it’s own built-in reaction to receiving continual pain signals), that I am indeed finding a way to still do so.
So is it possible for a person like me to move the way I do? Absolutely. It’s not easy, but with determination and the right mindset, it is possible…and as with everything else in life, what is right for my body is different from what is right for other’s bodies.
Every step I take, and every yoga posture I hold, serve to remind me that I, and not my RA, am in control of my body.
I wouldn’t have it any other way.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“Disabled people do not all share a single experience, even of the same impairment; likewise, designers in the same discipline do not follow a single approach or hold the same values. Exciting new directions will arise from individual designers working with disabled individuals on particular briefs. This will produce different responses each time, complementary and even contradictory directions, but this richness is needed.” — Graham Pullin, Design Meets Disability