Let it Scar
A few days ago, I saw through social media that the mother of an old friend from high school had passed away. I sent my condolences and scrolled through the feed to see “stay strong” from a few individuals. When someone passes, words, my profession, are sometimes inadequate to stitch up the wounds of someone in pain. Sometimes, we need to let the wound bleed and when the scar is there, tend to it.
The aftercare of wounds is sometimes a matter of life and death.
This week, I am writing this entry as I listen to my “Recovery” Apple playlist I made when treating my CIDP. I have linked one of the better explanations of this illness I have found, but to truly understand what CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is, listen to someone who lives with it or their caretaker or nurse. You will find some of us in remission and some of us unable to do the tasks I used to take for granted such as brushing my own teeth. Tonight, I remember I am lucky. I am moving my body again.
I continue to write. Jae Jin’s Chemo Song https://www.youtube.com/watch?v=pbWQEo25z70 shuffles through. I used to listen to this during a bout of chemotherapy drugs used when I did not respond to FDA approved treatments. I listen to it and remember playing the song with my physical therapist while she did range of motion exercises with my arms as I fixed my eyes on the ceiling. I remember crying and she said, “it’s ok to get it out.” She did not tell me to stay strong. I think of this on the eve of my third eye surgery to correct damage from Thyroid Eye Disease (TED) caused by Graves’ Disease. I know–let one autoimmune in the door and they all come in!
I listen:
“This cosmic chaos underneath
Clouds hang down beneath my heavens” (Jin. “Chemo Song”).
-The sky is beautiful. Block out the noise down here as I heal, please.
-Will I eat anything besides baby food again?
Yes. I didn’t know at the time, but yes. The drugs that scarred so harshly left me with bouts of remission and time to do things like walk by the lakefront again.
“My tears fall like menthol
Tracing coolly down my face” (Jin. “Chemo Song”).
-Be strong. Just strong enough to fight. Cry when needed.
“But I come alive as I let go
Our scars collide as only You could show” (Jin. “Chemo Song”).
-We all have scars. Physical. Emotional. Exposed. Hidden. Tomorrow is my third surgery with two goals:
Gain my depth perception again and be able to navigate this blurry life. My left eye looks downward and to the left while my right eye looks forward (if you ever catch a typo, let’s use that as my excuse. Let’s roll with that).
Capture what I used to look like.
I’ve gotten clever at squinting, head tilting, and covering my face in public. Holding off on new headshots because “this is not what I look like.” Truth be told, I’m four years older than when the TED hit and I don’t know what I look like anymore. When my mom was feeding me baby food, we joked around that at least my face was still okay. Until it wasn’t.
I began to look in the mirror less and less, hiding behind “when I get better” I’ll get headshots. When I get better, I’ll date again. When I get better, I’ll…and the list goes on and on. So tomorrow, I am lucky to be able to take a step closer toward healing and I’ll be strong at the hospital, but tonight, I feel the mystery and the weight of four years and know that whatever I do look like when the bandages come off and the muscles heal, which they will, will reveal another opportunity for me to live. A family member asked me if I still wanted the surgery and simply: I’m doing these treatments and surgeries to live, not survive.
We removed a section of bone in 2020 and I stayed strong after crying for the loss of what I knew as me. I cried when I remembered complaining that I was fat. I cried because I complained about my haircuts making me look fat (maybe I put down that fork once in a while). I cried that I complained I wasn’t a cover model (that was never an actual dream but I’m taking creative license). I cried for not realizing I was lucky. This body is a shell and no two shells look exactly alike. Wouldn’t that be boring. We all have our own scars. Now I know that we each show strength in our own ways and in our own time. I look forward to seeing the person in the mirror over the next few days as this four year wound is tended to with a scalpel and stitched up again to heal. There is no scar for this procedure, just ice and dissolving stitches in my eyes so I can see things clearly once again as I fall into clarity or confusion. Time will tell, but we cry because we are strong enough to do so as we live this life brought forth by scarring. I listen to the song and think: tend to your wounds and let them scar; there’s a story to live in there.
A blurry bar with a filled glass, but the lights are too blurred to capture clarity. This is how Isee things in public (a representation from Unsplash. Photo credit; Andrew Welch)
