I'm Learning to Love the Body I Was Afraid of Having

In the years that I’ve been sick.  My illnesses have multiplied and compounded.  

What began as a diagnosis of mono, eventually became Myalgic Encephalomyelitis and Fibromyalgia.  Later I developed a rapidly advancing muscle wasting disease called Polymyositis and the adventure of having an auto-immune cluster of rare diseases began in earnest.  I lost a large amount of muscle weight in less than three months.  Along with it, I lost the ability to rise from a seated position, to roll over in bed, to walk without assistance.  The treatment for my disease was high dose steroids and a synthesized dose of pig-pituitary hormones injected into my stomach a couple of times per week.  Inside of six months we had halted the muscle wasting and I had gained more than double what I lost from all the steroids and injections.  With less muscle available than it took to move all my new mass, and still experiencing pain and fatigue from exercise, the weight did not come off.

Two years later, I developed Pulmonary Fibrosis, a lung disease that turns your alveolar sacs (the little tissue bubbles that are the last stop in transmitting oxygen from the lungs into the bloodstream) into scar tissue.  When that happens, oxygen can’t make it into the blood.  Inside six months I’d lost 60% of my lung function.  I felt like I was panting all the time and could never catch my breath.  My doctors referred me for a double lung transplant.

Jon Kabat-Zinn says, “As long as you are breathing there is more right with you than wrong with you, no matter what is wrong.”  

Reading this quote during the height of my lung disease I felt really challenged by his assertion.  How could he say there was more right than wrong?  He didn’t know what it felt like to lay in bed and feel like he was suffocating!  His lungs weren’t turning into scar tissue!  He didn’t know just how many things were wrong.  I didn’t even list half of them in that first paragraph. There’s so much wrong!  And yet in order for there to be breath in my body, so many things have to be going right.  I must have a mouth, a nose or a trach to allow air to enter my esophagus or trachea.  My lungs, muscles, ribs, skin and brain have to work in concert for me to be able to inhale.  When I do, my heart is pumping to circulate oxygen through my vessels in my bloodstream, taken from my lungs while my lungs are extracting carbon dioxide from my blood in order to prepare for my exhale, expelling the gas I do not use.  The whole thing is a lot more detailed than this description and therefore even more remarkable.  So, in that way, a lot has to be right with me to take my next breath.

It’s been five years since I was referred for transplant.  I have not received lungs.  I have been on and off the list, depending on the urgency and severity of my lung disease. In the meantime I’ve had to lose the weight that the steroids packed on in order to get listed – an inordinately difficult task when my lungs, muscles and ME/Fibro keep me from being able to exercise off the weight.  

The body that I’ve been left with is not one that I recognize, not one that makes sense to me.  

From de-conditioned muscles, flabby and prematurely aged skin, to multiple scars from surgeries, biopsies, port placements and other disease and medication-related assaults.  It is tough at times for me to look in the mirror.  I’m likely to buy clothes that cover much more of me, hang loosely so they don’t show my shape, or wear pants instead of shorts or skirts in the summer because my legs are so dimpled and thick with edema.

With all of that said, isn’t this the body that is getting me out of bed each day?  Doesn’t this body work to keep my blood pumping, my lungs breathing, my digestion happening?  Yes, I can tell you all the things “wrong” with my body; and some days that list seems so long!  And yet, my body works hard on my behalf and I, generally, don’t give it the credit or thanks that it deserves.  

I don’t because it’s so difficult to do that when I’m attending to the pain and disappointment about what I can’t accomplish because of my physical limitations, grieving the loss of the ability I used to or wish I had, longing for a body I used to see when I looked in the mirror and tending fears about where this path leaves me.  Each of these reasons (and others I didn’t mention) are valid things that take our time and attention.  It’s helpful to have friends, family and/or professional help to manage these real and difficult parts of having a body that’s so different than we used to. And I can still learn to appreciate what I have.

I’m learning how to do this through focusing on what I can do.  You see this a bit in the opening of the last paragraph– I’m learning how to notice (not take for granted) the things my body can do. My fingers flying over the keyboard to type this missive, my eyes (with the help of glasses) reading what I’m writing.  This can start with anything.  If you’re new to it, start with the five senses.  What can you hear?  Smell? Taste?  Touch?  Set a reminder or alarm throughout the day to begin noticing what you’re doing.

Even if it’s just watching TV, that requires brain function, listening and watching– huzzah!  From there I can progress to gratitude.  I know that many people tout the benefits of gratitude.

For me it has been life giving. Much like the fact that I’ve learned that marking down information about my pain each night can help me see patterns or trends of pain that I would otherwise miss, writing down gratitude– even a word or sentence each day, requires me to look for and notice things that I would otherwise overlook or forget.  One thing each day you’re grateful your body can do: “Taste a ripe strawberry.”  “Pet my soft cat.”  “Laugh with my child about what happened at school.”  Each of these examples and more can be entry points to appreciating the skin I’m in.  Today I walked to the mailbox.  Some days that is out of reach. No, it isn’t climbing a mountain– something I used to be able to do.  That is a hard loss, but some days I can’t make it to the mailbox.  Today I did. That’s worth appreciating.  What’s going right with your body?