Today is the 10 year anniversary of my chronic pain journey! What kind of gift do I get for a ten year “Spoonaversary“? A chrome wheelchair? Imported silk compression stockings?
It’s the anniversary of the day that I was invited to go shopping with my mom and sister, but I said, “Nah, I have so much laundry and chores to catch up on, and I kind of wanted to try out this new pilates video. Next time… Have fun without me!” After my workout (dancing ballet around the living room to Fiona Apple), and in the middle of cleaning, I went down the basement steps with an armload of laundry and fell. When I landed on my leg, I felt and heard an audible lightning bolt SNAP run through my entire body. I knew I had broken my ankle. My father came and took me to the ER where my husband met us. But they said it was only a sprain. Just a few months later I was diagnosed with the debilitating, incurable, PERMANENT condition called Complex Regional Pain Syndrome (RSD). It is said to be one of the most painful medical conditions a person can have. I was 22.
Lesson: Always take the invitation to go shopping over chores
Why should I look back on a sad day like that? Why remember a time that changed my life forever? Why should I even think of a day that crippled me and started a domino effect of chronic illnesses that have brought down my body since?
I celebrate October 24th because I have made it through 10 years. That is 10 years of life survived in spite of all of the pain and turmoil Complex Regional Pain Syndrome rained down. That is 3,651 days I have CHOSEN to live with this monster. Every day that I fight on, I honor the warriors whose lives have been taken from them because of this disease and for those who live daily, consumed in pain.
When I was diagnosed, I said: “No way! I cannot take this nightmare for one more second!!!” So I say to that terrified me at 22 years old: “You did it girl. It’s like some kind of miracle!”
I’m looking back on the last decade, knowing I am only alive because of the loving support of my husband, our wonderful family, online friends, and those physicians who have cared. This disease spreads, and it spreads through the whole family. They have come with me on this journey, and I am so thankful for their compassion and support. I’m not here because of my own strength by any means. People say that God doesn’t give us more than we can handle, but LIFE certainly does. And God sends us the resources to make it through life’s amazingly difficult valleys. I’m here today because His strength is sufficient when mine never is.
So what is the appropriate gift to give my body on this ten year celebration of life? We have been through so much together, body! (I don’t want to make her mad, you know…) If you have any suggestions, please share.
This blog is participating in CRPS/RSD Awareness Month for November. Please subscribe below to read inspiring stories of survivors this coming November.
Awakening: Brain meet Body
After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.
The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.
I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.
~Free My Self~
After the damage to my brain.
After disengaging from my great betrayer: my body.
After the pain went from unspeakable to so immeasurable,
I could no longer speak.
After there were doctors who were unafraid
to use uninvited hands on my body in its weakened state.
After family members had to dress and clean my flesh.
Yes, “my self” liberated from “my body.”
It had to, you see?
This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.
For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.
All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.
When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.
My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.
Thank you to Peggy Wolf Designs for allowing her Magical Fairy Image to be featured.
Please visit her enchanting shops of original prints and leather goods to purchase something beautiful for your home or gifts!
This entry has been included in The Spoonie Daily online magazine!