Once there was a young warrior. Her teacher told her that she had to do battle with fear. She didn’t want to do that. It seemed too aggressive; it was scary; it seemed unfriendly. But the teacher said she had to do it and gave her instructions for the battle. The day arrived. The student warrior stood on one side, and fear stood on the other. The warrior was feeling very small, and fear was looking big and wrathful. They both had their weapons. The young warrior roused herself and went toward fear, prostrated three times, and asked, “May I have permission to go into battle with you?” Fear said, “Thank you for showing me so much respect that you ask permission.” Then the young warrior said, “How can I defeat you?” Fear replied, “My weapons are that I talk fast, and I get very close to your face. Then you get completely unnerved, and you do whatever I say. If you don’t do what I tell you, I have no power. You can listen to me, and you can have respect for me. You can even be convinced by me. But if you don’t do what I say, I have no power.” In that way, the student warrior learned how to defeat fear.
There is a fundamental opportunity for happiness right within our reach, yet we usually miss it–ironically, while we are caught up in attempts to escape pain and suffering. Drawn from traditional Buddhist wisdom, Pema Chodron’s radical and compassionate advice for what to do when things fall apart in our lives goes against the grain of our usual habits and expectations. There is only one approach to suffering that is of lasting benefit, Pema teaches, and that approach involves moving toward painful situations with friendliness and curiosity, relaxing into the essential groundlessness of our entire situation. In the midst of chaos, we can discover the truth and love that are indestructible. Included in the book are:
ways to use painful emotions to cultivate wisdom, compassion, and courage
ways to communicate that lead to openness and true intimacy with others
practices for reversing our negative habitual patterns
methods for working with chaotic situations
ways to cultivate compassionate, energetic social action
Having been in New York City for a little over a week now, I’ve reached that point where I feel like I’m finally getting settled in–partly due to the fact that my stress about my long international travel day is now a thing of the past, and partly due to the amazing support network that has mobilized around me.
It’s common to hear how a chronic illness like rheumatoid arthritis can weaken certain relationships. This is undoubtedly true, and I have experienced as much more than once during my RA “career.” I’ve also learned that there are often many other underlying issues that can attribute to such a thing happening, and that it is rarely ever completely the fault of this illness with which I live, and to the (sometimes) corresponding lack of understanding on the behalf of others.
One of the ways living with rheumatoid arthritis really rocks, however, is in learning who *is* there for you, ready to provide you support whether you ask for it or not. (Because, as is often the case, we usually need the most help when we’re the least inclined to accept it.) It is also in learning that this support can not only come from places you least expect…but it may also come from a wide multitude of sources. Recognizing this support network that surrounds me, and allowing them to step in and help in so many different way, has quite honestly been one of the few things that has allowed me to remain so optimistic over the past month.
Because while I know that good things will (and have already) come from this current adventure, and while I also know that nothing is guaranteed in terms of finding a way to slow down the progression of my RA, I also know that between the choice of focusing on what is going wrong or focusing on what is going right, I continue to make the only choice that I consider to be viable: find a way to make the most out my situation, no matter what that situation might be.
Even if it means throwing up blinders to certain situations in my life, in order to focus on what is absolutely required to not only keep moving in a physical sense, but also to keep moving forward in an emotional sense. While some people may interpret this as selfishness, those of us who live with this on a minute to minute basis know how it often comes down to a sense of survival; a way to not plunge into the darkness. (I’ve been there before, and never want to go back.) And while some people might interpret this as my advocating for thoughts of avoidance and denial, I am actually saying quite the opposite: don’t focus on everything…focus only on what matter the most.
One of the most difficult aspects of living with rheumatoid arthritis has been learning how to not only ask for help, but to graciously accept it when it is offered. While I got on a crosstown bus this afternoon, a lady offered me her seat. I thanked her, and immediately accommodated myself. A few minutes later, the lady next to me offered her seat to another person who had just gotten on the bus. This time around, though, the attempt to help was not so well received. “Do I look that old?” the new passenger asked, “because I really don’t like for people to offer me their seats.”
And I sat there chuckling to myself, trying to figure out how someone would not want to sit down and give their knees a break…and then I reminded myself that everyone is not so, let’s just say, “privileged” to have a pair of knees like mine.
Learning when and how to receive support is absolutely essential to figuring out how to cope with this disease. I know how isolating it can feel at times, how it can seem that very few people might be able to understand what is going on…but part of our role, as people who live with a chronic illness like rheumatoid arthritis, it to let other people know what we are living. (Of course, not only do they have to be willing to listen…but we also need to figure out a way to make them want to listen. It’s not always easy to find that right balance, but it is possible.)
As with so many other aspects of living with this disease, the answers we need are not always front and center. We have to look for them. Most importantly, we have to *want* to look for them. I have learned, firsthand, that as long as I continue to follow this philosophy, I will always continue to find the answers I need.
Because if we don’t continue looking for answers, what else is there to do?
In closing, I would like to thank each and every person who has offered a caring gesture of support over the past few weeks; I had originally planned on describing each generous act but the list has grown way to long. Please know, your support has forever been registered into my memory, and etched into my heart. I will never forget this recent period where I once again came oh-so-close to getting lost, but (fortunately) allowed myself to grab on to the helping hands that so many people around have and continue to extend. I may not be flying yet, but I have no doubt that I will soon be back to my normal superhero ways.
Stay tuned…for the next adventure of Rheumatoid Arthritis 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.
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!