My hair became my spectacles
This👇 is the selfie I took in June 2022. I might have taken hundreds of selfies with varying levels of failed pouts. But this one might stay special. Why? - This is the last selfie where I had my hair. Before I lost my hair to Alopecia Totalis (an auto-immune disease that affects hair follicles).
My first stint with Alopecia came two years ago. I lost a small hair patch on my head overnight. I was diagnosed with a simple form of Alopecia. I recovered from it with topical injections pretty quickly. My hair came back. Hurray!
A year later, with 2 months left for my sister's wedding. Alopecia returned with a vengeance. While taking that selfie, I knew there was a realistic chance that I might not get to take a selfie again with full natural hair. Hair that I was extremely proud of. Here's my auto-immune journey.
Race against inflammation.
I knew how James Bond might have felt about doing things on time before world destruction (if he was real, of course).
I was on a schedule. 2 months to my sister's wedding and then 5 months to my wedding.
The immediate course of medicine for such rigorous hair fall is corticosteroids. If you never heard of it, this is what you need to know: These drugs are magical. But magic comes with a price. They suppress immunity to decrease inflammation in the body. The pro is they work quickly. The con is they have quite a range of interesting side effects on your body.
One month in- steroids did slow down the hair fall. (For the sake of not ruining your good night's sleep, I will skip the side effects I faced). Here's my last traditional pic with full natural hair at my sister's engagement.
But we didn't know then that we were playing a game of chess with inflammation, and it just sacrificed a pawn to attack the queen. When steroids were being tapered, my hair loss started moonwalking back to my life (minus the subtlety of Jackson).
Here's the problem with hair and inflammation. You can stop inflammation with a magical drug in a week. But you can't magically grow your hair in a week. I lost almost 60% of my hair within two months.
When my sister's wedding happened, I used a hair patch wig. Here are three pics of mine. One of them is with a wig. Can you guess which one?
Okay, I cheated. All of them are with wigs. Wigs are magical, and with the power they bestowed on me, I got through my sister's wedding. I think- wigs are the secret keys to hair-heaven that hair-gods leaked to us. As an entrepreneur, I believe there is a huge opportunity to tap. A lot of uneducated market and luxury experiences are waiting to be created. Wait, I derailed off the topic.
We are on the clock. One wedding done. One more to go.
The stopwatch shows I have 4 months to get full hair for my wedding. I was put on corticosteroids again. This time, they did work. I got 95% hair back. Life was nice. Steroids are being tapered. Hair was short, but at least it was back. We have 2 months for hair to grow to my normal length. Hurray! It's time to go nuts at my wedding. What could go wrong?
Well. Turns out, a twist was around the corner.
With 1 month left for my wedding, I can see that my hair loss started again. Things are going wrong, and they are going wrong quickly.
So what happened to the wedding? How did I look?
Time for a sub plot.
Today, as I write this article. I am at 100% hair loss- a condition called Alopecia Totalis. Writing this article just made me sit and see my battle. I had some good ten tears. It felt good.
There is nothing I could have done to prevent Alopecia with certainty. Most patients with Alopecia are otherwise healthy (like I think I am). There is no single reason why the auto-immune gene got activated. There’s COVID vaccine. There's a family history (my relatives had simpler versions of Alopecia). Sprinkle stress and diet as seasonings if you feel like it. But at the end of the day, it happened. It sucks. I can't change it.
I was on steroids for ~7 months and then 5 months of withdrawal as of today. The post-steroidal phase was hard. Weight gain (I am blessed to put on only 5kgs) + mood swings + low mood + body weakness + fat redistribution + vitamin loss + muscle loss. Withdrawal was fuck harder than being on steroids.
Seeing my parents get crushed. Realising no medicine has 100% certainty. Looking at myself every day in the mirror was not easy. I used a good old remedy- hearty and nasty cries to ease into the pain. And I got back to the drawing board. Or rather sat on a lazy boy, accepted the cards I was dealt with and started internalising.
One of my learnings was how much we take things for granted. Simple things. Everyday things. And how much of my pride I associated with my looks. I had dense hair when many of my friends were battling male pattern baldness. Hair that I took as a given. Until one day, I was told I would lose hair quicker, faster and nastier than my friends. I had to ask myself, what am I sans hair? Should I give hair this much importance in my life and how I look at myself? The answer was obvious but internalising it took time.
Will I ever get my hair back? I removed it from my list of "things I track". I look kickass without it, anyway. Case in point-
I am glad I am no longer chasing hair growth with steroids. My energy is back. My routine is back. My mood is back in my control. Auto-immune is part of my equations now (Anti-inflammatory diet and Pranayama are few things that replaced Zomato Gold).
In my 20s, I had an item on my todo list: "Get a photoshoot done". I never got around to doing it until I finally scheduled it for my wedding. Little did I know having dreams and todos comes with a cost. The cost of expectations. The cost of battling to keep the dream alive.
So what happened to the wedding? What happened to the dream of having a kickass photoshoot? How did I look?
The dream and the dream wedding.
Well, when you put your heart into it, it looks like dreams do come true, albeit with some last-minute world-bending. With a sprinkle of cosmetics + an insane amount of love from the universe, parents, friends and my partner, here's how I looked on my wedding day:
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They say a picture speaks a thousand words. For me, pictures of that day talk about the battle I was going through (I was on steroids as I walked down the aisle). They show a wife who was a wife even before being wedded, parents who were happy to see their son finally get a woman who can bear him and my friends who call me a hero irrespective of how I look. But most of all, they remind me of a day I didn’t take for granted. (You think dancing is hard. Dancing when your legs are weak from steroids is just nuts crazy. But it was nuts fun.)
Coming back to the whole spectacles thing.
I was having one of my "How is 42 the answer to life and universe?" talks with a friend. She asked me how I was dealing with hair loss mentally. By then, wigs and caps had become a part of my wardrobe. "Mental model" might be a too fancy way to put it. But I gave her my spectacles analogy:
Let’s say you were prescribed specs (as she was).
Do you love that your eyesight is poor and you must wear spectacles? nope.
Does it suck? a little.
Do you think twice about it? nope.
For me, hair is like spectacles. You put it on, and you go through your day without realising that you have them on.
I consider every phase of our life as one book. Roughly, a book for each decade. After 6 books, I imagine I would be opening my previous books to remember and cherish how I once looked. I would have mixed emotions. I would be happy that I had such a rocking time. “I had killed it in those days”. I might also be sad how rushed I was. I would probably wish I had slowed down.
Alopecia made me look at the book that I am writing today. I smile at the previous pages, and I am mindful of what I would write the next day. There’s an ironic sweetness to the whole thing.
