Since being diagnosed with an auto-immune disease called Polymyalgia Rheumatica, or PMR, I have had to give up almost everything I love to do in life. In this post I talk about my severely limited activity level, learning to accept my condition, and finding solutions that will help me keep doing photography.
I am awake. My first thought: “Don’t move!”
As long as I stay perfectly still, the day has potential. Maybe I will get up and be warm, sit outside and enjoy the morning with my coffee, go for a walk, and create art. But as soon as I move, that dream might pop like a balloon overfilled with too much hope. Hope is not something I am good at, so I don’t move, and I try to enjoy this moment of uncertainty.
Half an hour goes by. I start thinking about coffee.
I turn my head. Nothing. I take a deep breath and prepare. As I roll on to my side, I wince as both of my shoulders are squeezed by invisible hands. I imagine the hands have long finger nails that pierce into my skin and right through my bones until they crumble. Deep breath.
I try to push the blankets away, but my arm barely moves an inch. I use my feet to kick them off. I roll out of bed and immediately reach for the dresser for balance. I will not be able to put on a sweater today, so I wrap myself in a blanket and head to the kitchen.
This is just one of the many ways my daily routine has changed in the past few months. Not that I was ever a “jump out of bed and greet the new day with enthusiasm” type of person. But this is only the beginning.
Since being diagnosed with an auto-immune disease, I have had to accept many losses.
It’s called Polymyalgia Rheumatica – otherwise known as PMR. It’s a form of rheumatism that causes joint pain in the shoulders, neck and hips, crushing fatigue, fever, and a sick feeling similar to that of the flu. It is not a life threatening disease, but it is a debilitating life-altering disease.
But feeling sick and tolerating pain are one thing. Having to give up everything I love to do in life is quite another.
I can no longer carry my camera gear. I can only hold my smallest camera for about 10 minutes. I am not strong enough to handle the boat. I cannot go for hikes. International travel is out of the question.
Who am I now?
I have discovered through this process how much of my identity is tied up in the things I love to do. I am a photographer. I am a boater. When I can no longer do those things, who am I? Who have I become? I am a sick person. I am weak and feeble. I am worthless. I am a burden for those who love me. Already. At 51.
If there is one good thing to come of all this, perhaps it is the realization that I am none of those things. I am not the things I like to do. I am not the business I run. I am not my failing body. Those are just things that are part of my external world. I am still the same person inside.
My biggest challenge right now is to accept what is happening. People always say you have to fight it. You have to fight for survival. But when you fight you are angry, you create a tension in your body that is not conducive to healing, you are resisting the world and what happens in it.
This thing is happening, I cannot control it, and it doesn’t care how I feel about it.
Part of acceptance is to stop trying to figure out why. Why me? What did I do to cause this? Am I eating the wrong thing? Did I get bit by a strange bug while travelling? Is it the sunscreen? The fact is that no one knows what causes auto-immune diseases. And if the experts don’t know, I am probably not going to figure it out either. It just is.
The silver lining with this particular disease is that it will eventually go into remission. Most people have it for about 6 years. Some lucky folks only have it for 2, others have it for 10.
I have spent a lot of time grieving over what I have lost. But now I am trying to move on and find the good thing. I have lost so much that there is a large opening for something new to announce its arrival. Some new door must open. Some new path must reveal itself. It must, right?
I think I have made a little headway in discovering my new path. With a giant tripod and gimbal head, which Ray sets up for me, I have been able to continue photographing wildlife without having to deal with the weight of the gear. I’ve been playing with time lapse photography, which requires a great deal of patience. But if there’s ever a time to sit on a location for hours, this is it. I’ve been delving into digital art, which I have really come to love, so much so that now I am making my own textures and photoshop brushes to use in my art.
And when I cannot do any of those things, and find myself limited to books and videos, I decided to become a lay-wildlife biologist! Every week I pick a new animal and learn everything I can about it through books and video.
I don’t feel like I have found my path yet, but I continue in the hopes that whatever new thing reveals itself, it will be worth the price of admission.
In the meantime, I know how lucky I am. Whenever I wonder if it will all be okay I ask myself “am I okay RIGHT NOW?”. Yes, I am okay. I am here in the RV in a beautiful location. I am with the man I love. I am free. I have nature to enjoy. Right at this moment I am okay.
I wish I could say this was my answer every day. But I have to admit on many days I am not okay. But I am trying. And making art, on the days when I can, is helping me through it.