Writing has become like fly fishing to me. I release my line, or many lines in my case, and await my catch. To take from my heart and head, words that resonate with my soul on a particular day or moment and then commit them to paper is completely nourishing. Catch and release. The best catch of the day is always the sharing in conversation with all of you, about anything from these written pieces that resonate with you personally. This, like a full cooler of rainbow trout, or the joy of something on my line, only to let it go, is a complete treasure to me. Happy Weekend, everyone.
When I photograph, I love relying on the camera mechanism of auto-focus. It seems so easy, so clear and so tangible. On a camera, autofocus works so flawlessly and presents clear images without you having to do much more than hover your finger over the shutter.
A recent example below and above. What a difference this technology can make!
In real life, and without a lens in hand, I have work to do make autofocus work in my favor. In real life, you can’t take that kind of easy clarity for granted. You are called to move through your days manually; responding to each moment as best you can.
There are so many “autos” in our lives as of recent. Auto pilot. Auto shutter. Automatic. “Auto”, a Greek word which means “self” seems to be in the limelight quite often. Our cel-phones can call on auto-command, and Alexa, Amazon’s nifty musical device can automatically get groceries to your doorstep while you sit with your cup of tea. In this world of fast pace, automated systems, “auto” gets a really good rap.
There is one “auto” word, however, that I just haven’t found peace with, yet.
Autoimmune. I have an autoimmune disease. Which means I have a disease where my body fights itself. It takes all the things that a body naturally does to heal itself and turns those mechanisms off.
This disease is named, “Juvenile Rheumatoid Arthritis”. Nine syllables which I don’t like to utter. Ever.
When I was diagnosed right before Junior High Mascot try-out’s, my parents and I were stunned to learn of this vicious little attacker. My ankles had swelled to the size of juicy, heirloom tomatoes and as if Junior High isn’t hard enough?! Junior high with cankles?! This, just simply felt unfair.
Since this diagnosis, the disease has found its way into little vulnerabilities I have and manifested its demise upon me in a variety of ways. But Junior High was the last time I can remember Acute RA; a flare up that targets a series of joints, making them visibly inflamed and leaking joint liquid.
My disease is not usually visible. But now, I have acute RA in my left-hand and wrist. And it’s not that cute. I have fluid around my joints called synovial liquid. Synovial sounds like such a nice word. Like a fancy retreat in the Swiss Alps. How can it be so nasty?! This has caused so much pain as of recent, I frequently find myself holding my left hand with my right hand. A gesture of self-encouragement and support I suppose!
You know when you have lost weight and your face looks thinned out? And then you gain a little and wow, you just look better because those thin lines that hold some of your life stories are more filled-in? That’s my left hand!! It’s so pretty. It’s perfectly plump. My right hand, the one that is functioning as I wish it to and politely places caffeine right to my lips is veiny and paints the picture of lifting our four girls for many years. It’s weathered and looks the part of a rancher’s hand. But that left hand right now, I don’t mean to brag – but the left hand could be a hand model right now!! It looks so young and able. Never mind that I can’t even lift even a lunchbox or squeeze my wedding rings back on my ring finger.
This disease has humbled me in many ways.
Rheumatoid is like a thief. It comes when you are least expecting it and steals your energy first. It looks you straight in the eye and says, “Give me all your good feelings … or else!” And you oblige. You hold onto walls to hobble out of bed. You try to stop making the wincing face because you feel deep pain. You pretend that tomorrow will be magically better because the thief will have moved on.
But it doesn’t. You can’t will it away like that. You have fevers that come on without any warning. And overwhelming feelings of just wanting to be horizontal. So, you have to walk alongside the thief and discuss what is happening. “I don’t feel myself without energy or motivation,” you say. And you dig deep within yourself to find other parts with which you identify. “I don’t want to move or be active,” you say to the thief as he smirks back at you. “But I will get up and move anyways,” you snicker back. The thief retreats slightly.
The thief sends entire body malaise and the systemic swelling occurring on the inside makes you ache. “I despise that you took joy out of my day because you caused great pain!” I yell to the thief. “I don’t want any day to be lost with this precious life! I have a yoga practice to attend, pig-tails on a little girl to straighten, flowers to deliver to a generous neighbor and a wide-open beach that is awaiting my toes!” And the thief says, “Watch what I can do next.”
So it brings depression and exhaustion to your bedside. You fall prey. You fight the bad stories of yourself. And you grab a wall and an Advil and say to the thief, “I am in charge of this body. Only me. You take your bad cells. Your inflammation. Your old stories and your pain and you move on.”
I have covered it up. Worn sunglasses to conceal my tired and dark- circled eyes. Brushed on thick, tinted sunscreen to cover my adult acne induced by an overworked immune system. I chose outfits without zippers or buttons, because both of these tasks seem like a frivolous waste of energy! I have worked to make it not visible. But truthfully the only way it begins to move on is to allow it to be seen and then, like all persistent problems in our lives, hold it, as well as myself, accountable.
RA doesn’t ask you if this is a convenient time. It’s like jury duty. It just arrives in your mailbox and demands your attention. Your autofocused attention.
Literally, I can honestly say on a Monday I felt stellar and by Tuesday, am I am bed-bound. “I want to dance,” I say. The thief says, “No.” I say, “Watch me!” Endorphins tend to be the thief’s worst enemy.
I visit an old friend, the lap pool, but the pressure of the water is too much weight for my fingers to push through. So, I grab a kick board. “Ha ha!!” I assert. “Got you now!” And the thief shamefully climbs out of the pool embarrassed and without a cover-up.
I have tried to ignore my RA. I say, “It’s bike to school day girls! Let’s go!” So, I maneuver my bike with my elbow instead of my hand. “Ha ha! Can’t get me!” I say. I feel so gingerbread boy. Then later in the day, my elbow feels like someone slammed into it while snowboarding over my feet. My toes are tingly and numbness is overtaking them.
I slurp down turmeric and ginger. I force down sauerkraut and drink green juices. I eat all the ugly and smelly foods and rub cayenne oil over all my tender joints. These are the easy things. Honoring that I can’t do it all or that I need a lot more rest?! Not so easy for me. At all. Only nine syllables to the words Juvenile Rheumatoid Arthritis, but there are nine hundred derivations of what this disease can do to the body and mind.
It finds open windows, tiny injuries or emotional vulnerabilities and it invites itself right in.
When you and the thief have met eye-to-eye for too many conversations to count, it finds another place to go. Slowly, and with time, you recognize yourself again. Not by how you look, but by how you feel. And my God, this is a gift.
Luckily for me, in this case at least, I have hyper sensitive body. So, when that corticoid shot hits my hind end, I can generally expect to feel light-years better in 24 hours. I feel like the first image. Pretty fired up and kind-of electric! I get rosy cheeks, and a surge of energy and boom, my motivation is back!! Oh, the blessing of feeling my spirit back. It’s heaven.
I have read; in so many scientific sources, that most diseases stem from inflammation. Again, I don’t mean to be a show-off, but this disease that at times, lives rampant within me, is one of the first diseases ever to be identified within the human race. In all honesty, I wish that made me feel better.
Here we are, centuries after rheumatoid was scientifically defined and very little is still known as to its genetic reasoning for attacking the immune system in nearly 1% of the worlds’ population; mostly women. Bragging rights just keep coming!!
This disease has reminded me that so many of us carry things that are not visible to the rest of us. It’s taught me to be more empathetic with myself and with others. When the disease is active I am reminded to “Go only as fast as your slowest self,” inspired by the author Anne Lamott. Because any faster and my joints seem to recoil even more. Slowly, very slowly, I am trying to adopt this mantra throughout all my days, not only during flare-ups.
It’s taught me to listen more carefully to my body. “What do I need? How do I give my body this? How do I say, “No” to this that or the other and just retreat?”
It has taught me to uncover old wounds and heal them with time.
It has taught me that most everyone I know, carries hardships, deep seeded challenges, ailments, genetic stories that they don’t want to possess. And that most of what everyone carries of these categories are not so easy to see at first glance.
The funny thing about an autoimmune disease is that it is like a star. A toxic, misbehaving star, but a star nonetheless. It arrives in the body for an unknown period of time. Eventually, it burns out. It may burn out before you are 20, or 40 or even 50. Or, it can exist with you your entire life and only burn out when your galactic and earthly time, has too.
Over time, I have sat with this thief and wondered, “What do you want me to learn? What do you need from me? When will you leave??!!” And the thief is mute. I have much to uncover, much to understand about the power of the body to heal itself and the power of ridding the body of cells that just don’t belong. In the meantime, I will give reverence for what is and let go of what isn’t.
And right hand, thank you. You are really stepping up. And it shows.
#silverlinings #autofocus #autoimmune #rheumatoidarthritis #alwaysthinkinginphotos #photography #catchlight #parenting #mompants #flyfishing
I, by the miracle of God, landed in the Rheumatologist’s office many years ago of Dr.Guy Clark, MD. I was actually walked directly to his office, by an internist, Dr. Kupperman. “I am so sorry,” Kupperman offered. “You are still not in the right office.” I had been searching for months after graduate school, in an effort to understand more about what was happening in my body.
At the time, RA had taken on many other nasty forms unidentifiable to me. “I will walk you to my colleagues office down the street. I believe strongly this is the place that will give you support,” Kupperman shared. He was so right and I was, and still am, so thankful for his insight.
In my mind, Dr. Clark should already possess a Nobel Peace Prize in Medicine from Stockholm for his work and vigilant study of autoimmune diseases. But because he is humble and so busy serving his patients, (most of us grouchy and un-fun), he stays the course. A pilot and surgeon in Vietnam, Dr. Clark chose the study of Rheumatology because there was so little know of the disease. He wanted a stiff challenge. And he got patients with stiff knees! Funny how life is.
I cannot speak more highly of any other doctor I have met to this day. If you, or someone you know is suffering from an autoimmune disease, I highly recommend Dr. Clark. His smile alone can shake the nasty affects these inflammatory diseases can bring. I am forever grateful for his kind, effective care.