I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.

As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.

At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.

On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.

After a few minutes of slowly moving my arms and hands around, I noticed my arms felt like noodles and I was getting drained quickly. Seriously? Am I crashing from detangling my hair? I didn’t want to get help maintaining my hair. I think it’s similar to the reason that we cannot tickle ourselves. When I am pulling my own hair, I know exactly what is going on, and the overall experience, including the pain, is tolerable (that is, until I realize I can no longer lift my fingers from over working my arms). But when someone else does it, my brain wants to explode from the sensory overload. So asking for help with it wasn’t exactly a good solution for me.

As I was lying still, trying to recover from the intensive workout called detangling, I could smell my own scalp. It felt ridiculous to me that I was feeling so sick from trying to take care of the stinky mess that was my own hair. So I called it quits.


A few days after shaving. My cat joined in for the photo!

As soon as I recovered enough to talk (to ask for help), I got my hair shaved off. We already had all the tools we needed at home because I used to trim my husband’s hair at home, so why not? Shaving itself was not fun at all with all the hair pulling and moving around so soon after a crash. But it felt great to wipe off my head with a wet towel later!

It was an easy and practical decision for me. Shaving was something that I wanted to try as a teenager, but did not have the audacity to do so against the dress code. My hair grows fast (my hair dresser once joked that all the protein I ate went to my hair), so it won’t take that long to grow it back even if I miss long hair anyway. So I didn’t have any sentimental objection to losing all my hair. I was actually pretty excited!

Bundles of cut hair

My hair was long enough for donation, so we made sure to cut in ponytails before shaving.

It’s been well over a month since. I have been meaning to write about it -the ridiculous motivation for the shave off that I was feeling too sick to detangle my hair because of ME-, but of course, ME got in my way. Between the limited time that I can spend writing, and many things that I want to work on, timely posting is a big challenge (Time reference gets edited so many times! I swear I started writing this post a few days after shaving). But this also gives me a lot of time to think.

By itself, it’s just hair and I am babbling about a drastic haircut that I’ve never tried in my life before. But it is also another story about how pervasive this disease is in every aspect of my life, and how an invisible illness turns visible.

For most of my time with ME, I looked normal and healthy. Then things like a wheelchair, a walker, or a cane became necessities, and I was no longer someone with invisible disabilities. But long before my ME became an obviously visible illness to everyone else, it was making itself seen. It was seen through countless days that I wore sweat pants. I permed my hair to save time caring for it, but I didn’t have enough energy to return to the salon to get my hair dyed again, so my hair was partitioned in two colors. I have a lot of clothes that I only got to wear a handful times and a bag full of makeup that are barely used.

As I was getting more ill and leaving home less frequently, more I wanted to do things that I rarely did before, such as actually thinking about what I was putting on instead of grabbing a t-shirt and jeans, or wearing a light makeup (tinted sunscreen and eye liners). In retrospect, I think I was treating each outing as a special occasion, even if it was for a medical appointment. Or I was defying M.E. by asserting my will. In a way, it was a futile effort to mask my increasingly visible illness. I remember right before I stopped driving earlier this spring (oh my, how fast things changed), I would get exhausted from a few minutes I spent getting ready to go out, and end up going back to the bed. Still, even the very last time I went out, I wanted to make an effort to look nice.

Now I only wear my husband’s t-shirts with hair that is shorter than what I was born with. I don’t even know if my makeups were unpacked after our move. I tried resisting as long as I could, but in the end, this disease has a very strong will power and asserts itself against my will. One thing I learned past few months is that fighting is futile. I need to learn and adapt, not mourn the loss. I am not running this marathon to set a world record.

So instead of getting frustrated and crashing over and over again because of my entangled hair and itchy, stinky scalp, I decided to get rid of my hair. I had fun with it, occasionally running my hand over my short hair, which reminded me of giggling on my grandpa’s lap when I was little, rubbing against his scratchy chin. I never realized how much I looked like my dad until I saw myself with the same hair style that he had when he was in high school.

It’s grown long enough already to feel soft, and I’m wondering if it’s time to buzz it off again. I got a makeover because of M.E., but hey, I can still have fun with it, right?


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