I want my body back.
This is all I can think about as I blink back tears in the dark and quiet of the night. I always feel a pang of guilt for admitting it out loud. But I need to take a moment and allow this longing for my old self without shame.
I’ve settled into my life in this new body and it’s a really good life! There are frustrations and sadness but, for the most part, I’ve entered into a phase of recovery where I know how to do life in this body and do it well; A phase where I am happy. But tonight? Tonight, I don’t care about any of that. Tonight, I need to give myself space to grieve my body; to miss my life; and to ask why even though I already know there isn’t an answer. No, tonight isn’t about how far I’ve come, it’s about the things I left behind – things I am yearning so deeply to have back – and it’s about all the new developments that come with SCI that I really wish would vanish.
I want the pain that continually wraps around my ribs like the most unwelcome embrace to disappear. And I want the muscle spasms to calm the hell down. I want the burning sensation that constantly engulfs my lower body to burn no more. I want to have control over my bladder and bowels and never see another catheter ever again.
I want to stand, run, dance and hike – all in a non-adapted environment. I want to drive my car with my feet and hop in and out without dragging a wheelchair behind me. And I want to see a staircase and think the only reason to panic is because I didn’t wear a supportive bra and my boobs will get too wild as I run up and down.
I want to roll over in bed without sitting up, crossing my legs and hoisting my body over the other way. I want to push myself up from laying to sitting without elbowing my husband in the face or accidentally pulling my daughter’s hair. I want to quickly run out of bed when I’ve forgotten to do something without adding another transfer to my day. I want to feel sex the way I used to.
I want to give my daughter a piggyback and I want to demonstrate the ballet exercises she keeps talking about. I want to play soccer with my soccer obsessed boys and sit with them in the top row of a movie theatre like I know they want so badly. I want to run down the beach with all of them during our upcoming trip to Hawaii. And I want to get on the floor with them for games and puzzles because that was always my favourite way to play.
I want all of the time back that I lost to this injury. I want to find myself in a parallel universe where this accident didn’t happen and see what became of the rest of that day and every minute since. I want to watch both stories unfold side-by-side, minute-by-minute, to discover where the similarities and differences lie with each. I want to know what is impossible to know – what my life would look like had my body never been taken.
This post unfolded in my head at 3:00 AM. I couldn’t sleep and the thought of getting myself in my chair to get out onto the couch felt like too much effort. Then, I spiraled and obsessed – I want my body back. After writing it out, I finally fell back asleep. I didn’t write it with the intent on sharing it, but as it usually does, a new day brought a new perspective and a renewed sense of self – just as I am. And I believe it is always worth sharing a reminder that grief comes and goes but is not a place to stay.
Reading it all back the next morning I was already arguing with myself.
Yes, you hate catheters, but imagine if they didn’t exist.
No, you cannot show her how to plie, but you are here to encourage her and cheer for her and you’re still the person she wants to show her ballet to.
The movie is the same from the front row and the back.
I could go on.
There is no shame in giving yourself space for grief when it comes (even if it is at 3AM on a Saturday night). I miss my body. Every day, at some point or another, I miss my body. But more often than not, I’m thankful for all of the things my body can still do and the life I still have. And on days like today, when my husband is out raking up leaves, I’m kind of thankful for the things it cannot do. Only kidding (kind of).
Thank you for sharing transparently! As a mom of an 18-year-old wheelchair user, I kind of understand what you are going through, but from a moms perspective. I appreciate how you acknowledge the grief, yet continue to be grateful!! Thanks again for sharing! Your words are serving a huge community!
I’m glad you liked it and can relate. Thanks for your comment!
I love your writings and how you are able to express yourself. You are a wonderful inspiration to me and I’m sure to many others.
Thank you Betty!
I say what you say … if only I had my body back life would be as I imagined it would be… not just a shadow of my life xx
God you so get me. Lol. I am a very type a person. Extremely independent and stubborn. I do everything without help but have these same thoughts. Especially at night when I have nothing immediate to focus on. Do you find yourself counting out transfers and figuring out the best way to avoid extra transfers. It’s kinda like trying to beat traffic. And yes, catheters. When I woke to the news today about there being a number of earthquakes off the north end of the island I was reminded again about how my new body is so much more challenging. I went right out and bought a spare emergency box of catheters and plan to make it a bathroom emergency box. Then I gotta figure out where to keep it all so I can access it in an emergency. My old self would not have to really worry about the bathroom stuff in an emergency situation. Anyway I’m rambling. This post is your best one yet!
Thanks Tammy! I’ve been meaning to write something about being prepared in an emergency. It’s definitely on my to do list
Thank you for your transparency even in your moments of greatest pain💔. I believe, with all I am, that one day God will redeem all that is lost. And every tear you’ve shed…and every moment you’ve been robbed of…will be, not just a distant memory, but forgotten altogether. Your precious children will never be less, nor have less of you because of your accident. They will only be richer in compassion…and love… and patience….and understanding…and that is not a little thing. They will learn more from their mom than anyone else BEcause of your “losses”…and God will use every single second of your experience in one way or another for His glory. So in the wee hours of the morning, when regret and fear and the evil one rears their ugly head…rest assured you have not lost anything. But rather, gained a perspective that will help more people than you can ever even realize with your testimony and living out loud in a tough world. I for one am inspired by reading your posts. I have MS and struggle in some similar ways. Your words help me to remember I’m not alone. So thank you. And bless you. ❤️Stephanie
Thank you for sharing this moving blog. It not only helps me understand every day life for you & others, it inspires me to do what I do – to help remove the barriers that exist which prevent you from reaching your aspirations. Flexible seating in cinemas would help for a start!
Beautifully written!!! I’m with you on the 3AM thing! The “raw” hour. I am guilty of paraenvy. Tetraplegia, 13 years in December. Being unable to use both hands to simply change a newborn’s diaper (grandchild) has been a tipping point for me. 😊
Nothing good happens at 3am! I totally understand. I love your term though – paraenvy
Thank you for your honesty Codi. You convey your thoughts and feelings so clearly and without any filters. Reading your piece is not only helpful to people with spinal cord injuries, but to all of us. So many of us take our bodies for granted, or bemoan ailments that never bothered us before. Thanks for the reminder to be grateful for simple things.
Thank you for reading and for your kind words.
I’ve read this piece twice and so appreciate your candor.
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Thank you for a such a honest post. I can relate on some level. I was diagnosed with Interstitial Cystitis (IC) in 1995. IC is also called Painful Bladder Syndrome. I am in pain every day. I like what you said about allowing yourself to have bad days. You just got to make sure you get out of the slump. I started my blog to share my story and experiences but also for anyone suffering from a chronic disease or situation. I want to help support anyone needing a kind word or someone who just listens. Again, thanks for your post.