Moving Forward

RA Guy Adventures of RA Guy

“After all that I’d been through, after all that I’d learned and all that I’d been given, I was going to do what I had been doing every day for the last few years now: just show up and do the best that I could do with whatever lay in front of me.”
― Michael J. Fox, Lucky Man: A Memoir

The past two weeks have been quite an emotional roller coaster, full of highs and lows.

First, came the news that my request for financial assistance at the Hospital for Special Surgery in New York City had been approved. Not only am I uninsured and unable to work, not only have I been in the disability benefits queue for years, but over the past half year my RA has come out of the gates swinging and has not slowed down one bit, oblivious even to all of the Prednisone that’s been tossed in its path.

Which has caused me on more than one occasion to start thinking about what the near future might hold, not as an exercise of fear but as an exercise of preparation. More specifically, what happens if I need to start using a wheelchair, on occasion? The part of the answer that I have difficulty with is not the actual wheelchair, but the fact that I live in one of the most physically-inaccessible cities in the world. Think: one million people, the narrow streets of Medieval Italian villages, and hills that by comparison make San Francisco look relatively flat…definitely beautiful to look at, but not great to be in when living with impaired mobility.

Back to receiving the good news, though. I was just turning in for the day when I got an email from my sister. It had no subject, an attachment, and the words: “thought you might like this.”

As I read the words, I was in utter disbelief. Yes, at the start of the new year I was determined to open new doors in regards to gaining access to new treatment options (and once again would like to thank everyone who wrote a reference letter of support on my behalf), but I never expected it to happen so quickly. The first thought that came to mind was that I might just be able to keep moving a little longer than expected; I might just be able to keep using my hands into the future.

And tears of joy started to flow, unabated.

Within a few days, however, my excitement started to turn into anxiety. Nervousness about having to make such a long international trip on my own (not helped any by the fact that when I made this same trip a few months ago, it turned into a four-day ordeal), but also nervousness about once again putting my local life on hold, packing my suitcase, and heading off the my home country of the U.S. for an undetermined amount of time.

I continued to focus on the positive though: this is an amazing opportunity that I have been waiting for for years. I am reaching the end of the effectiveness of treatment options that are currently available to me. Working to improve my health and my mobility are my top priorities at this moment in time, and in the coming months…even if it does mean that this will be the first time in twelve years that I spend a birthday away from my partner…and my 40th at that! (I’m still holding on to a sliver of hope that there may be funds for him to travel to NYC mid-April, but nothing is guaranteed yet.)

Then came the list of all the things I needed to do, even as my RA continued to progress and–for the first time ever–I lost the use of my hands for almost an entire day. I have to get some new eyeglasses, stock up on my meds, take care of an immigration/residency issue, and so on and so on. The pain itself was overwhelming; the thought of packing up and going to the U.S. in a few weeks was even more overwhelming. Throw in that I had to increase and not decrease my Prednisone after the first week, up to 25mg (my highest dose to date), and it was all just too much to deal with. I broke emotionally, and shared as much on my Facebook page.

I wasn’t the least bit ashamed…because the truth is, getting through each and every day, each and every hour, is trying enough. I sat up one night and told myself that I once again have to rebuild my life. Sure, I’m approaching this challenge from a position of hope and peace–unlike what I had to do years ago when I was stuck in a pit of darkness, depression, and suicidal thoughts–but I am, nonetheless, having to figure all of this stuff out: how to type, how to be able to carry things I need when I leave the house, how to cook when I can at times barely lift a fork to my mouth, etc.

I know I can do it, and I know I will do it. The thought of doing so, however, makes me feel already tired, and already overwhelmed. I use this as a reminder, though, that larger goals are made up of smaller goals, which in turn are made up on even smaller goals. So while it’s definitely good to set my sites on the larger picture, it’s probably even more important–and more effective–to focus on whatever little piece of the puzzle is in front of my, at any given moment in time.

It’s all about continuing to move forward, one step at a time.

It’s all about having hope for the future, without setting unrealistic expectations.

It’s all about living and loving life for what it is, even if–especially if–life takes us on a journey we never could have expected.

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

P.S. I purchase my airfare last night. The good excitement has started to settle in, and the nervousness has started to fade away. Plus, it’ll be nice to be back in New York City, a place that hold so many good memories from when I was an architecture student at Columbia University.