Stained Glass

Painting On Life’s Canvas

RA Guy Adventures of RA Guy

Three years ago, right around this time of year, I came extremely close to ending my own life. Not only was my movement extremely limited, but I was also having extended periods of blurred vision. My RA was raging out of control, and the thought of finding a way through the pain and confusion seemed way too daunting, and way too scary.

I was right about one thing at the time, though: I was extremely empty inside. (I felt like my entire identity/self had completely disappeared.) I would eventually realize, however, that even these feelings were an opportunity. They were an opportunity to rebuild myself and my life; a blank canvas upon which I could paint away with my soul’s content.

And that’s exactly what I’ve done over the past few years, and it’s exactly what I’ll continue to do in the foreseeable future. Yes, my rheumatoid arthritis is still there each and every hour of each and every day…but instead of being the focus of my existence, it’s become a constant shadow, relegated to the sidelines. Life goes on…and each and every day, I am grateful to be able to see just how beautiful it can be.

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


Different Worlds

RA Guy Adventures of RA Guy

I live in two different worlds.

I go from the rigid grid of avenues and streets in Manhattan, to the steep sinuous roads that carve through the valleys of a dense metropolitan area up in the Andes Mountains of South America. I go from sea level to miles up in the sky, where the air is thin. I go from rectilinear, modern sykscrapers, to rough, jagged mountainscapes. I go from a land of rush and constant over-work, to a place of laid-backness and slow living. I go from having to plan social outings weeks in advance, to being able to call up a friend and say, hey let’s meet for coffee in an hour! I go from summer to winter, and from winter back to summer, all in the very same day.

Many things remain constant, however, no matter where I am…

Every morning is a lottery.

Some days I can move, and other days I can’t.

When I can move, I start off my day slowly. I play with my dogs. I draw open the curtains. I pull the broom out from the kitchen corner, and sweep the hardwood floors. I don’t see these as chores, or as tasks that “have” to be done. I see them as a way to slowly stretch, and warm up, my body.

I notice the subtle difference in ambient air temperature. I appreciate the constantly-changing angle of the sunlight that floods the house. I listen to the chirping of a hummingbird in the garden…and, if I pay careful attention, I feel the buzzing of its wings.

On the days I can’t move, I relax, and enjoy the warmth of my bed and the multiple layers of blankets that cover me. I listen to music. I think. Most importantly, I don’t stress out. There is nothing that needed to be done in the next couple of hours that can’t be done later, I remind myself.

I connect with the overwhelming pain in my hands, a pain that feels like each and every bone has been broken. Even though it feels like I will never be able to move again, I know I will. I drift back to sleep. I dream.

Someone very close to me was diagnosed with a chronic, autoimmune disease this past year. I can see this person trying to hide her struggle; I don’t know if she’s trying to hide it from herself, or from the rest of the world. Having been in that very same place for so many years, I know exactly what she is going through. I know she has some unfathomable hurdles coming up in her future, but I also know that she is and will continue to be okay.

I don’t call her “hiding” out, nor do I cast undue attention on what she is facing. I do check in on her regularly, and let her go through what she has to go through.

While all of us who live with these types of disease stand to learn a lot from others who are going through the same thing, the most important steps forward are usually of a very personal, individual nature.

We can’t do it alone, yet we have to do it on our own. (Just one of the many paradoxes that becomes a daily reality when our bodies no longer move on command, and when our minds race in the confusion of knowing, yet not knowing, what is going on…)

I don’t deny my pain, but I do build a mental block. Something…anything…to give myself a respite from the emergency alerts that my body continually sends to my brain. I take a deep breath, and start my day all over again. I feel the crunching of my joints, and the instability of my limbs. I slowly let the pain filter through, past the numbness. I connect with it.

I no longer label my day a “bad” one, because the pain “is still there.” I broke that chain of thought many years ago, and I am all the better for having done so.

This is my body.

This is my life.

I refuse to stop moving. I know that if I stop moving, even if for just a few days, the delicate balance inside that I spend so much time and effort maintaining will go out of whack.

And when it does eventually go out of whack, as it always does, I take a deep breath, I smile, and I say: let’s do this (find that balance) again.

I’m always just a few steps ahead of the pain and inflammation. This thought used to stress me out, knowing that this marathon never ends. I have since gotten used to it, though, and tell myself that all will be well.

And I no longer feel like I’m kidding myself, as I once did in the past.

Everything is indeed okay.

All is well.

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


Easier Said Than Done

RA Guy Adventures of RA Guy

A few years ago, I made a very concerted and intentional effort to change the focus of each and every new day. Instead of focusing on my pain and limitations, I would instead focus on what I *could* do.

I would focus on life.

As I adopted this new way of living—a way that has and continues to serve me quite well—I found myself emotionally unprepared for many of the reactions and comments that I received.

“Stop showing off,” or “you make me feel inadequate.”

“You’ve forgotten what it’s like to have RA”, or “I doubt you ever really had RA in the first place.”

“It’s irresponsible for you to talk about your decision to get off all medications,” or “you *can’t* get better…the only thing that keeps me going is knowing that I’m not as bad off as you are.”

I hold no anger or resentment to people who sent me such messages; in fact, my feelings are the exact opposite: I wish everyone well. And I hope that anyone who feels stuck behind this disease finds his or her way forward.

I *know* how hard it is to live with this disease, and I know just how completely overwhelming the pain and depression can be. I also know what it’s like to, on multiple occasions, have decided that it was time to end things, once and for all.

People often tell me that much of what I talk about nowadays is easier said than done, to which I would say: abso-effin-lutely. Finding a way to live well with this disease isn’t easy. But it IS possible.

And that is the thought that we always need to hold on to, no matter how rough things get.

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


When Others Don’t Understand

RA Guy Adventures of RA Guy

Rarely a day goes by on social media when I don’t see a post and corresponding long thread of comments related to a)other people not understanding rheumatoid arthritis, b)what you should say to someone living with RA, and c)what you shouldn’t say to someone living with RA.

Now don’t get me wrong, I understand firsthand the frustration that results from people not knowing the reality of what it’s like to live with this disease, and I’m not saying these conversations shouldn’t be taking place. I know how much it can hurt when love ones don’t provide the support we might be seeking. And I know how much it can sting when other people miss the mark during their attempts to try to offer advice and suggestions.

I know it’s important to release and work through these feelings. For years I too banged my head against the wall when it came to reacting to all of the above. But at a certain point, I realized that is exactly what I was doing.

I was banging my head against the wall.

I wasn’t working through these feelings. I was just repeating them, and feeding my anger and frustration. And in so doing, I was giving these non-productive feelings precious time and energy; time and energy that I could have be dedicating to something else. I wasn’t helping myself any, and I more than likely wasn’t encouraging others to try to come around and gain the understanding that I so desired. (I don’t know about you, but I know of very few people who decide to “jump on board” after being berated, whether they were in the right or in the wrong…)

Once I stopped to analyze my reactions, and not the actions of others, I started to learn a lot about myself. In a blog post that I wrote at the time, I thought out loud: “I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.”

I also started to realize that more often than not, our loved ones are just as scared of this disease as we are, and don’t always know what to say or how to react. I started to realize that even though the advice of strangers so often missed the mark, it was usually well-intentioned. And I also realized that in the big scheme of themes, it doesn’t really matter if others understood what I am going through or not.

What matters the most is that I do what needs to be done to take care of myself, confident in the knowledge that I understand what is going on…and as long as that is the case, everything will be okay.

A few days ago I shared a U.S. News and World Report article on Life with “Invisible” Illness, which states:

You have nothing to prove. “People are going to judge you. People are going to give you a hard time,” Smith says. “Educate them as much as you can. But at the end of the day, it’s not your job to prove that you’re sick.”

To which Phyllis responded: “I feel like I have to prove it every day. It makes me feel guilty at times because I don’t do something.”

As I read Phyllis’ words, my first thought was one of wishing that I could reach out through the screen, and give her a huge hug…because those words took me back to my own mind many years ago, when I myself operated by the same premise.

(Let me be clear, I am *not* passing judgment on what Phyllis had to say, nor am I trying to say that what she is doing is “wrong” and what I am doing is “right.” What I am trying to do is to use her honest and open words to illustrate the journey that I myself have undergone—from a point of feeling like I needed to prove what was going on and needed to have everyone else understand as much, to a point where I no longer have any desire to prove that I do indeed live with this day in and day out, and while I think it’s important to educate others and raise awareness in general, I am no longer bothered when I come across someone who doesn’t have a clue, or a family member, friend, or stranger who might share tips or ideas that really don’t help.)

Based upon the many comments and messages I have received over the years, this journey is one that I think most of us experience—moving from feelings of frustration, guilt, and needing to prove something to others, to realizing that what matters most is taking care of oneself.

(On a side note, I’m convinced that in a weird sort of way, once we began to prioritize our self-care above everything else, many people who didn’t previously “get it” start to comprehend just a little more the severity of the challenges that those of us who live with rheumatoid arthritis face on a daily basis.)

In regards to having nothing to prove, Doreen makes a good counterargument: “until you have to prove it to Social Security…” (Which just goes to show, there is always an exception to every rule!) What are we supposed to do in this situation? If we want to receive the services that we deserve, we of course have to prove our case, and get the other person to agree that we do indeed qualify for disability benefits.

Which begs the larger question, what about health care providers? What about doctors, who either don’t understand what is happening to our bodies and minds, or who for whatever reason doesn’t believe us? We have to prove something to them, don’t we?

In the past I would have been absolute in my response of “yes!” But as with many things, my approach has shifted over the years.

I am now at a point where I believe that, as a good friend pointed out to me, health care providers of this sort are betraying a very basic trust. It doesn’t matter is they’re doing it because of bureaucratic or financial reasons, or out of the misplaced belief that certain individuals are only out to “score” certain medications, or because they are overworked, or so on and so on. The reason for their behavior doesn’t matter; the end result remains the same: they are betraying the trust that a patient has placed in them, a trust that says that the doctor is supposed to work with the patient to find out what is going on, and to find answers in the hope that the patient can be well.

In the past I felt like I had to get these types of healthcare providers to understand, too. But I no longer feel that way, because my priority now is to take care of myself…and if a healthcare provider has shown that they are unwilling to help me attain this goal, I just move on.

What’s the beauty of doing as much? Whether we’re dealing with family and friends, strangers, or doctors, there will always be those who “get it”. And there will always those who don’t…but when we prioritize our self-care above everything else, and focus more on those who understand and less on those who don’t, we find ourselves surrounded with the (internal and external) understanding that all of us seek.

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