I have not been able to describe what I have been facing because I cannot as of yet get enough emotional distance from it. Every time I pause on the page, my eyes begin to tear up and I have to abandon the effort. It is too close, too present and much too raw.
But dearest Northlight says she wants to read about it. So I will share where I am at the moment. My hope is that my sharing will inform, validate and/or educate folks about invisible illnesses such as mine.
I need to find a place to start, and that has been a large part of the problem. So I will try and start at the beginning … no not the beginning, maybe more like a few weeks ago.
As most folks who know me are aware, for the past couple of decades, I have pretty much been in almost constant pain. However, the full extent of the pain was apparently a mystery even to me. This is the story of how I came face to face with this mystery.
So … every winter I face a really bad outbreak of my eczema. I call it the creeping crud. This winter’s version was particularly bad since I never fully recovered from the previous winter’s scourge. So I decided in a rare case of exasperation to ask my doctor for help. She prescribed a steroid pack to knock out the infection. The steroids would stem the inflammation and give my poor skin a chance to recover. I would take six pills on day one, five on day two, till I finished off the pack with a single pill on day six.
Well, you can guess what happened next.
I started the pack the morning after one of my all day classes. I was exhausted, drained and feeling like I was swimming through pea soup. I swallowed the first two pills, ate breakfast and laid down for my usual morning-after-teaching coma. And suddenly my eyesight improved and I even felt a jolt in my energy. I sat up shocked as I suddenly could think and breathe fully. I stood up and suddenly I could feel the muscles in my legs.
As the day progressed, I found that I could read and comprehend complicated text, my bra stopped feeling like it was biting into my skin, my shoulders relaxed enough to not need pillows behind me as support, and I even played with my kitten. My taste buds were able to discern the subtle flavors of the fruit, cheeses, teas and olive oil. My whole world opened up and I felt more alive than I had felt in years, decades … lifetimes.
And then reality hit me. I finally realized just how much pain I had been enduring all these years, and more importantly I finally knew how much it had cost me. As each day brought more and more revelations, I would find myself crying as I began dreading the return of what I now knew was a terrible burden in my life.
In yoga class, I finally understood how all those poses affected the muscles in my body. I had never registered how much each pose both strengthened and challenged my body. I could meditate at the drop of a hat since now I did not have to first use such a commanding will to force myself to relax – I just relaxed.
Folks kept saying how I even looked younger. I also discovered what everybody else was complaining about with tight muscles, being worn out from exercising and even … just being hungry. I ate better because I could actually feel when I was hungry. I knew when I was tired, thirsty or even just content. All my emotional, physical and mental responses were based on being able to sense my own body without all the clues being masked by pain. I danced with glee after a day filled with yoga, walking and writing.
A few days before I finished the pack, I fell into a deep awareness of just how brutal I have been with myself. All these years, I have beaten myself up for not being able to keep up with the rigors of my life all the while completely unaware of just how much of my life had been obscured by pain.
I was deeply humbled by all I had been able to accomplish in spite of the pain. I also spent a lot of time forgiving myself for all the self-abuse I had engaged in unknowingly. I also allowed myself to grieve all that I had let go of because of the pain – all the dreams, the opportunities and even my corporate career.
Then I finished the pack. And just as I feared, all the pain slowly roared back. And oh my god … it was far worse than before. Because prior to this regimen, I had been able to bury my awareness of it. But here it was, front and center – it was excruciating. By day three off the pills, even my face was on fire.
My entire body was engulfed in flames. There were some vestiges of the reprieve still present. I could still inhale deeply at times. I could concentrate and read detailed descriptions early in the day. Meditation went back to being a real struggle. But the worst was yoga class. I had lost the ability to feel anything but constant pain. Every pose, every breath and every turn elicited just more pain. I could do the poses, but nothing felt good about it. At the end, I laid down on the mat and finally just let myself weep all the tears I had fought back during the session. It was horrible.
So now I am on prednisone till my doctor can figure out what can be done to help me. Prednisone affects the emotions among other things, so the slight easing of the wall of flames comes with a fiery emotional response – oh goody!
I have gone this route many, many times before. Test after test comes back inconclusive, till I finally just give up and stop complaining. I do not want to live my life on painkillers. But I do not want to go back to that level of pain. It is infuriating. It is maddening. And it just makes me want to shout, scream and … cry.
I have no emotional distance from this reality. Normally when I can write about my life challenges, I have enough distance from it that I can see what is there for me within the difficulty. Right now … all I can see are irritations.
But there is a deeper message here and I want so desperately to share it. Suffering on its own is not redemptive; sometimes … hell most times … it suppresses the life force. It is a lot like oppression. There is nothing noble or endearing about pain or suffering. Yes, it can make you stronger, and it can teach you a lot about what you are made of … but it comes at a cost. All these years, I had been unconsciously buying into all those stories from my childhood of Catholic martyrdom. Enough.
I would very much like to experience life on its own terms without the blanket of pain, thank you very much. And if *you* are suffering in silence, stop it. There is no reason, no good reason, for any of us to miss out on what life has to offer. Right now I am missing yoga because I do not want to spend my time on the mat in tears. But as soon as the sun comes out fully and it warms up, I am going for a walk. Because dammit … I *refuse* to miss out on life … again.