There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me.
This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you!
I choose, I choose, I choose.
My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
Sign here X _________________
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?
This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams were exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had physical access to.
Then, a few years ago, my health became much worse. I went from moderately mobile with chronic pain to bed bound with a variety of chronic illnesses and chronic pain conditions. Now, I’ve found myself cutting out all of the rest of life’s pleasures from the list of things I love. How can I say, “I used to love music” or “I used to enjoy singing” or “cooking used to be one of my passions” when these are all lies!
The truth is, I am still passionate about all of these things! Just because I cannot participate in them actively, does not mean the joy has not remained. In fact, when my brain condition and ongoing migraine becomes insufferable, even with no sound tolerable, getting lost into a silent song within myself has at times been my only reprieve from the unrelenting pain. My instruments now live in cases in shelves above my bed, or tucked away in closets. My voice has not echoed against the wall in song for years, but every day an instrument plays… A song cries out loudly inside of me. A different arrangement every single day, melodies no one hears but myself- and this music will not stop just because my ears cannot tolerate sound! No pain, no disability, no illness or mental destruction can take that music away from me.
Just because parts of my flesh weaken, and I am forced to make adjustments and accommodations to that- doesn’t mean that my passions and loves should crumble along with my flesh. There is nothing wrong with how much I desire. I refuse to shut parts of myself off just because I might FEEL more to live with passion.
Even though I can no longer cook, do I not still love it? I don’t need to be standing upright at a stove or walking the isles of a grocery store to envision a new recipe. I can visualize the food in front of me. I can imagine the flavors of a recipe in my mind’s eye. Is this not the passion for cooking still alive inside of me? Even when my POTS makes eating the last thing I want to do, I can still escape my pain through the simple joy of imagining myself cooking. Why would I ever say “I used to enjoy cooking” when that zeal continues to live strong inside of me?
Though pieces of my body may break, though my mind might continue to slow, though things I am able to do may drift away from my grasp, I choose not to allow that which I love break away. I choose to hold my passions that much closer to me.
And for those I let go so long ago, I would like to reclaim them. I ask that in comments, you consider reclaiming some of your own that you know you will always love forever.
-I have always loved to travel.
-Hiking is a love of mine.
-Dancing will always be one of my passions.
Thank you to artist Fensterer for allowing your artwork, “Lost Between the Sounds” to be featured. This was the only image I could imagine for this article, as his powerful work helped inspire it. Check out his other powerful images at DeviantArt.
(Trigger Warning: Addresses thoughts of death.)
Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”
When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”
Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.
Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.
Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.
All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.
The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.
I thought I saw into my future of pain, but I could never have foreseen exactly THIS.
This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.
Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.
“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.