I am the youngest of four fierce and opiniated daughters, and grew up with an impressive mother and formidable grandmother. The women in my adolescent life were and are, strong, independent and proud. I have continued into adulthood the imperative to nurture female friendships and mentors in my life. Women are key to my emotional support system and happiness.

I’ve always hated hearing women hate on their bodies and their appearance. I thought about this a lot in my lowest moments during chemotherapy. We are sculpted as girls and young women to find fault with our bodies; be thinner, be taller. How many times have I heard a friend state that they hate their thighs touching, the color of their hair, the shape of their face, the size of their chest? How often in life and work as women, is our appearance lauded first and our intellect second? Why is female-targeted advertising overflowing with diet culture garbage? Why are boys told to be strong and brave, and the phrase “throw like a girl” has pejorative connotation? I know we are making progress on gender bias and body shaming but more and more I realize the pervasive climate of “women should change” that despite my best familial efforts and influences, I grew up around.

Yes I’ve dyed my hair, done a cleanse and wished I was thinner. I’m not perfect, I’m human, but through my personal reflections and critiques, I liked me. I felt confident in my intelligence and wit and my appearance. I looked in the mirror and liked what I saw. I felt pretty. I was secure in the inside and outside matching; they made sense together as a cohesive whole. I had a stable sense of self.

When I was preparing to begin HSCT last year, I was terrified of my catheter insertion in my chest and I had no idea what to expect when I lost my hair. The port turned out to be a wonderful blessing that was no big deal, and losing my hair was similar. What caused immense pain and loss of self to some, was a pretty fun day of shaving my head with my dear friends. Which is why this season of my life feels so foreign and so wrong.

What comes next?

A similar theme in my writing is that I thought the transplant was the hard part… I thought the first six months was the hard part… I thought the first year of healing was the hard part. I keep, maybe naively, being absolutely blind sided and gob smacked when the next phase of this HSCT process is harder. Maybe that happens because I survived the past, and the future will forever be unknown.

I like reason and order and my alphabetized spice drawer. I am less good with chronic illness, neurodegeneration, temporary paralysis onset by chemotherapy and shingles vaccines, and an ambiguous future regarding mobility, function, and independence. I bounce between conquering the world on a good day and cowering on my pink couch in a ball, on my bad days.

“But you look good!”

Please, oh please, never say this phrase to me. However well intended, it doesn’t land as a compliment. Having suffered a largely invisible illness for years, that phrase invalidates my inner turmoil. I hid my diagnosis from the world for years because I wanted to appear normal. I hid my symptoms at great personal cost of energy and mental health. Now, with many outward signs of struggle, it is still not a compliment to be told I look fine or good, as if my disability is something that should be, or needs to be hidden away. It negates my suffering and my emotional and mental struggles. When someone says, “but you look good,” I think they are uncomfortable with my illness and disability. They want me to be ok, they need me to be fine because it makes them feel better. They care about the outward signs of health regardless of the challenges hidden inside. It has nothing to do with me, and is said because they don’t know what to say or how to acknowledge my otherness. They can’t figure out how to talk to me as a person independent of my disability. My disability has eclipsed me as a person.

I don’t feel like me

One of the problems with this (and there are many) is that I’m struggling with that very issue. I feel overtaken by my disability and have for some time. I previously wrote about the versions of me I mourn to try and articulate the facets of my personality that I miss. Additionally, my internal struggle to hearing I look fine is that right now, I don’t think I see me accurately. I am not a good judge of my own health, wellness, beauty, or me-ness. I know what I endured over the last year and that battle sure as hell is not reflected in my exterior. To me, my inside doesn’t match my outside.

Losing my hair was no big deal, but growing it back has been a challenge in self perception. I work from home, am rarely on camera, and don’t have many mirrors hanging around. When I do look in the mirror, it’s like another person stares back at me. The person I see and the person I am, are incongruous. I’m so happy to have my hair back and have a plethora of scarves and headbands to try and feel good, but ultimately, this new curly, textured hair doesn’t feel like me. Right now, I’m focusing on the beauty, the external, the feeling pretty because it’s the aspect that I seem to have the most control over.

A dear friend of mine said, “I know you Carolyn, and from my perspective, you do look like you.” She acknowledged the physical differences but also talked about vibrancy, health, and sounding like me. It was lovely reassurance from a trusted friend, but I need to feel it. I have body dysmorphia right now. I’m fixated on the changes in the last five years and specifically those from the last 12 months and my perceived defects. Maybe defect is too strong a word, but other isn’t strong enough.  

Wrap it up

I don’t have a clean takeaway or a positive inspirational button to end on. I just know that medical trauma, illness, disease, healing, wellness, trauma and transformation are processes that I’m in the thick of understanding. I’m remembering the strong women I grew up with and am still surrounded by, in order to try and focus in on the non physical aspects of me. I want to celebrate the internal and external changes rather than lament them. I’ve had more than four decades of liking me and I have to say, feeling disconnected and separated from my body is awful. Two thumbs down, do not recommend.

As always, I hope my struggles and medical musings help others to have difficult conversations with loved ones, be able to support a friend with new understanding, or maybe just feel less alone.

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