Moving Forward

“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.

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Is Less Really More?

Yesterday morning as the week started, I woke up with a mental list of emails that I needed to send out. When lunch time rolled around, and I still had not worked through my list of emails, I was somewhat startled. It’s taking me this long to do something that in the past wouldn’t even have registered on my list of thing to do?

Looking back at my morning, I wasn’t too surprised: after each message that I typed, I was tired, and needed a break. (On the plus side, I was giving myself these breaks.) While I recently installed Dragon NaturallySpeaking on my computer and have taken it for a couple of test drives, I still haven’t started using it on a regular basis.

A couple of months ago my good friend, fellow blogger, and Show Us Your Hands! co-director Lene Andersen gave me a great tip, in response to some comments I had made about how I always feel rushed when I leave the house. She told me to give myself “ridiculous” amounts of time to get ready whenever I needed to go out (and we’re not talking a matter of minutes, but of hours).

So right after yesterday’s lunch, I found myself preparing my shoulder bag by gathering all of the things I needed in one corner of my bedroom. I was starting to get ready, even though my physical therapy appointment was still three hours away. This ended up being a smart move on my part, because half an hour before I was scheduled to leave, my body started to shut down. Luckily, my shoulder bag was completely prepared with wallet, keys, cell phone, emergency meds, natural stress relievers, Nexus 7 tablet, and the list goes on an on. All I had to do was figure out how I to get my body from my house to my physical therapist’s office.

While I sat in the back of the taxi cab on the way to my PT session, I started to think about not only my day up to that point, but also about all of my days over the previous few weeks. I’ve noticed–how could I not?–that what I am able to do on any given day continues to decrease. Doing some of the simplest tasks takes twice as long as they once used to. Leaving the house requires a level of planning just below that which is required to have a U.S. President visit a local bookstore. Not only have I had to double the amount of time it takes to do something, I’ve also had to double the amount of time that is required to recover from doing something.

And no matter what thoughts I have in my mind, no matter the optimistic attitude that I continue to maintain during the roughest times, deep down inside, this truth sometimes feel like it is eating away at the essence of the person who I am.

Having admitted as much to myself–while still sitting in the back of the taxi (which is actually the location of some of my biggest breakthroughs)–I also told myself that it was okay to accept these feelings, but that I also needed to counter them…because if I didn’t, the weight of these emotions, of doing “less,” would become too much to bear.

So I started my search for the silver lining. What good could I possibly find from such a situation? I am typing less. I am leaving the house less. I am cooking in the kitchen less. I am even reading less, as the fatigue often seems to take over every time I lay down with a book. Less. Less. Less.

Then it hit me, as I thought not about the quantity of the things that I am doing, but about the quality of the things that I am doing.

Yes, I am doing less. But the “less” that I am now doing has so much more meaning that the “more” that I once used to be able to do. Every email counts, whether related to personal stuff, RA Guy, or Show Us Your Hands! counts. Every day’s exercise session–even though they may sometimes last no more than five or ten minutes–count, and I know as much because these stretches have already done wonders for my shoulders and my back. Every trip outside of my house counts, especially since I am usually going to see a doctor or my physical therapist. Every meal that I make, even though they are less frequent than ever before, counts, because I am doing what I love.

Everything that I am doing counts.

And what matters the most is not how much (or how little) I am doing. What matters the most is how I am doing it.

And I am realizing that when I really, truly love every tiny little aspect of what I am doing, all day long, that I am actually in a place that is so far ahead of what I was forced to leave behind.

Once the taxi stopped in front of my physical therapist’s office, I stepped out. I was in more pain than ever, and I had just accepted a whole new level of “limitations” that have entered my life, but I was smiling.

Most importantly, I was happy.

Because there is a beauty to be found in doing less…and I had just found it!

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

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A Day In The Life Of Coping With Chronic Illness

It’s been a rough week, but somehow I am still moving forward.

Even though the list of things that aren’t working quite like I might want them to continues to grow (my hips are locking up, my eyes constantly burn, my left knee is grinding, my hands are increasingly being pulled out of shape, my thigh muscles are a mess, and the list goes on and on), I find myself turning to what has helped me so much during previous crisis moments: focus on what is going right in my life. And just as easily, I find myself building another mental list; a list that motivates me to keep moving forward, no matter what is happening to my body.

For example, I have lost five pounds in the past two weeks. I continue to do fifteen minutes of gentle stretching and range-of-motion exercises, exercises that have already shown great results when it comes to problems in my shoulders, upper arms, and back. I am surrounded by supportive and caring people, both in my real life and in my online activities. I, along with a great team of directors, are in the midst of strategic planning for Show Us Your Hands!…and given the opportunity and the time, I could continue to add an infinite number of items to this list of things that are going right.

That said, dealing with a flare of this nature is still very challenging; so much so that even though I have no doubt that I will continue to get through each new day, I am feeling worn down. Like those of us who live with this know all too well, there is a certain point where no amount of rest will fully re-charge our batteries…we just have to learn to continue to make the best with what we’re given at any moment in time, whether is comes to the amount of energy we have or how much we are (or are not) able to move our bodies.

Yesterday afternoon, I started feeling somewhat startled. Over the past couple of years I’m never had much of an issue when it comes to connecting to the inspiration that resides within me. Now that I continue to face challenges that are both known (in what they are) and unknown (in their severity), I’m starting to find the exact opposite to be true…and while I know I need to allow myself the opportunity to experience this wide range of emotions, I also know that I cannot allow myself to enter into a backward slide towards the darkness, and towards the depression.

I found myself returning to my trusty three-point plan; a plan whose power belies its simplicity.

1. Accept everything exactly as it is right now.
2. Figure out where I want to be, and what I want to change.
3. Do *everything* possible within my control to get there.

And yesterday, at least, step three meant finding an outside story of support and inspiration that I could use to re-build some of those internal feeling that were starting to slip away.

One friend recommended Flying Without Wings: Personal Reflections on Being Disabled by Arnold Beisser. (Unfortunately this book is only available in print format, which means it will be some time before I can get my hands on it.) Another friend recommended Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen. My search soon led me to another book by Mr. Cohen, Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. I decided I would start there. (As an added bonus, this book is available in audio format!)

One of the most frequently received comments that I receive from readers of this blog is this: “When I read your words it feels like I am reading my own thoughts.” As I started listening to “Blindsided” yesterday afternoon, while sitting in the back of a taxi on my way to physical therapy, I could not help from thinking the exact same thing.

“I am not just a collection of muscles and nerves, the wiring that has short-circuited my dreams. Who I am, my very identity rests in my head. It is from that fortress, my command post, that my being takes shape. Citizens of sickness, those who suffer from their own assaults on body and spirit, know disappointment. Ours is a common siege. The battle to control our heads is every bit as important as combating the attacks on our bodies.

The psychological war with illness is fought on two fronts, on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. The positive impulse must struggle to survive in a troubled mind. I skirmish with myself, in an effort to shield my eyes from the harsh sight of the diminished person I believe I see looking from the mirror.

Self-pity is poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.”

In light of a disconcerting trend that I have noticed over the past few months, where some individuals feel the need to attack others (including myself) for choosing coping methods that are different from the ones they themselves use–an attitude that was clearly demonstrated in a message that I shared on my Facebook page last night–I found the next paragraph to be particularly poignant.

“…this book is not about sickness, but about the search for emotional health. This is not the answer, but only an answer. Coping is a personal art. There is no element of science in coping, no formula or objective standard for measuring proficiency. Coping is measured against only how you want to live and what you think works.”

Here’s hoping for the best of success for each and every one of us, when it comes to coping with the challenges that chronic illnesses introduces into our lives. Here’s hoping that we all continue to learn and grow, not only as individuals, but also as the wonderfully supportive community that we are.

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

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