Sepsis is dramatic, and septic shock even moreso as the latter carries a very real chance of dying. Once you survive, the doctors talk about recovery being a matter of time. Time to regain your strength and stamina. Time to rebuild your muscles. Time for your immune system to strengthen. Time to make psychological peace with your brush up against your own mortality.
It’s not that simple.
I’d liken it more to swimming at a beach, being grabbed by the undertow, and dragged out to sea. Once you resurface, you’re grateful to not have drowned. You can even see the beach in the distance. So you begin to swim. Along the way you are forcibly reminded that the ocean is not the same as a pool and you find yourself at the whimsy of currents, waves, and a growing fear of what might be lurking beneath the water.
You may think my analogy melodramatic. I might have thought so, too, before the events of the past two to three weeks. After all, the infected kidney that nearly killed me healed completely. I have normal kidney function. I can finally keep food down again, and I’ve recovered from a dangerous brush with disordered eating. I’m in therapy. I’m going to physical therapy. My immune system sucks, but it’s improving. Granted, I’m summarizing and minimizing almost three months (April, May, June) of heartache and anxiety, but at the start of July I had genuinely felt that the worst was behind me.
Then my hair started falling out.
One day I ran my hand through my hair and found my fingers coated with hairs. I did it again. It happened again. Over a few days I shed and I shed and I shed. I wrapped myself in denial until I stood in front of a mirror, horrified by the sight of my scalp shining through the sparse hairs.
I emailed my endocrinologist, praying he could give me an answer. His reply came back that I should come in for an exhaustive amount of blood work, but that it was probably just telogen effluvium (TE).
In a normal healthy person’s scalp about 85% of the hair follicles are actively growing hair (anagen hair) and 15% are resting hair (telogen hair). A hair follicle usually grows anagen hair for 4 years or so, then rests for about 4 months. The resting or telogen hair has a club or bulb at the tip. A new anagen hair begins to grow under the resting telogen hair and pushes it out.
Thus, it is normal to lose up to about 100 hairs a day on one’s comb, brush, in the basin or on the pillow, as a result of the normal scalp hair cycle.
If there is some shock to the system, as many as 70% of the anagen hairs can be precipitated into telogen, thus reversing the usual ratio.
The resting scalp hairs, now in the form of club hairs, remain firmly attached to the hair follicles at first. It is only about 2 months after the shock that the new hairs coming up through the scalp push out the “dead” club hairs and increased hair fall is noticed.
Thus, paradoxically, with this type of hair loss, hair fall is a sign of hair regrowth. As the new hair first comes up through the scalp and pushes out the dead hair a fine fringe of new hair is often evident along the forehead hairline. At first the fall of club hairs is profuse and a general thinning of the scalp hair may become evident but after several months a peak is reached and hair fall begins to lessen, gradually tapering back to normal over 6-9 months. As the hair fall tapers off the scalp thickens back up to normal, but recovery may be incomplete in some cases.
Sexist of me, perhaps, but I wonder if my doctors were women someone might have warned me of this in advance. No, there’s nothing I can do to rush the growth. Wigs are impractical in Singapore’s heat. Yes, it grows back, but I direct your attention to the fact that I am looking at months of super thin hair. Hair so thin that someone thought I’d shaved the sides of my head. Hair so thin I don’t want to leave the house without a baseball cap.
And if I read one my site advising me that it’s just hair and I should be happy to be alive I’m going to completely lose it. Yes. Yes I’m happy to be alive. But because I am alive I get to be goddamn shallow about my goddamn hair.
I got the blood work and found out that I have a host of other issues. None of which caused the loss, but none of which is helping it grow back, either. A low reading of a hormone paired with a low cortisol number may indicate that my adrenal gland isn’t working properly anymore. All of which provides an explanation for why I’ve been an exhausted, irritable crybaby with no sex drive.
Months of vitamin and hormonal therapy, all of which are making the symptoms worse in the short run, followed by more blood work before we can get more answers. I’m still losing hair. Not as fast as I was a few weeks ago, but “clumps” is still an accurate term. I’m clogging the shower drain. I’ve thought about shaving what’s left of my hair off, and Ravi offered to shave his head in solidarity if I wanted him to. I told him I’d divorce him if he shaved his hair off. I thought about dyeing it a host of bright colors because if it has to look weird, then I might as well up the weird factor, but it turns out that it will make it even more fragile and likely to fall out. It’s too fragile to have hair extensions put it. And wigs are just impractical in this heat. So I’m going to cling to what thin, fragile hair I’ve got left, and wear baseball caps in public.
Blame it on the hormones. Blame it on my PTSD getting triggered again. But I could easily fill the ocean from my analogy earlier in this essay with all the tears I’ve shed at this point. I am so tired of being brave, of being strong. I am exhausted physically and emotionally. And as an atheist I don’t throw around terms like this lightly, but I am exhausted to the very depths of my soul.
There are sepsis survivor communities online. I’ve looked at them, but I just don’t identify. Sepsis may be defining part of what I’m going through each day, but it’s not defining me. I refuse to let it define me or redefine me. Yes, I know they exist, but no, they aren’t a place where I would find comfort. It would feel like ceding that last bit of ground I have left to the disease.
I’m sharing this publicly because I don’t want to keep having the same conversations. Because I don’t want to go anywhere I can’t wear my baseball hat. Because if I take the hat off in front of you, I don’t want to shock you.
I know people mean well, but I’m tired of being asked the question “So, are you all better now?”
The only answer I have for you right now is to break down crying. No. No, I’m not okay. I don’t know when I will be. I don’t know how my body is going to betray me next. I don’t remember what normal feels like. Please stop asking me that.
I’m closing comments because this is all too raw and painful.