Anyone who met me previous to December 2009 may recall my brown hair, thick eyebrows, glorious optional mustache, and curiously red-tinted beard. Well, all that changed pretty suddenly for me in September 2009 when I discovered a hairless patch under my chin.
Turns out I have Alopecia Universalis – one of our human machine’s operational quirks, hallmarked by the immune system’s war against the body’s hair follicles. Fresh off the diagnosis, I join the legions of people who deal with an immune system disorder. Lucky for me, the mistaken enemy is only my hair; nothing too significant like sufferers of Multiple Sclerosis or Lupus must endure. I’m thankful for that.
My Alopecia Story: the first two years
What follows is my Alopecia story, which takes place from October 2009 until October 2011. I intend to keep writing with the Global Alopecia Mission soon in hopes to find a research to cure Alopecia. Looking at the story now, I certainly follow the 5 Stages of Grief, the well-worn track of feelings after a slam to our sad keys.
Like you might expect, getting Alopecia is tough. At no point was I in physical pain, but having my physical appearance altered was kind of shitty and surreal, but mostly just shitty. In the end, of course, it’s just hair and there are far worse things. To my friends and family who may read this: Thank You! Because it’s hard to get too far down when you have as much as I do. On with my odd odyssey to bald complacency.
The Confused Era (fall 2009)
What struck me at first was discovering how rare Alopecia is. I had never heard of it, or gave hairless people much thought. I recall mistakenly pronouncing it it Aloe-puh-see-uh, which isn’t even close to correct. I’ll never forget when I first heard it pronounced correctly, which came from friend and hair pro, who corrected me when I asked her about it, during what turned out to be my last hair cut. She learned the word in beauty school.
So begins the confused era, dominated with a a lot of “what the hell is going on” variances of thought. I figured that the hair-void in my chin and mustache must have resulted from my habit of thumbing the area while thinking. And, c’mon, what else could it be?
And: I had the worst fever of my life from October 25-31 that year, seemed like it could be related. I missed four days of work that week and had a fever of 103. Immediately after the fever broke, the hair began to fall. Those weeks, I would wake up every morning with my initial daily thought to examine my pillow, then wallow in confusion. But I had the “thumb” and “fever” theories to tell myself – it’ll go away, it’ll go away, as denial set in….
Medical treatment: At this point I called the doctor. “Yep – Alopecia.” I was prescribed a topical ointment to treat Alopecia Areata, a common form of Alopecia, where people get dime sized hairless patches that quickly hair over – 2% of the US population deals with this in their lifetime. I applied the cream to a small spot on the back of my head, and we left the face untreated.
Denial (winter 09-10)
Rough winter. It seemed to rain every day in Portland where I lived and I was leaving trails of hair behind. I started to avoid mirrors and cut down on my shower frequency to slow the fallout. I hadn’t told anybody about what I was going through, but I interacted with about 100 people every day at my jobs, and obviously something was up.
During this time, I felt like all eyes were on me and everyone had the same ‘what’s going on with Tyson’s hair’ thought that I too was having. But I didn’t want to bring it into reality by discussing it. Meanwhile, my immune system was in full attack mode against the hairy enemy and it didn’t look like I was winning.
Medical treatment: I had two doctors at this point – a Natropathetic doctor and a Dermatologist in Portland. The oddest thing to me about Alopecia to date is that dermatologists are the default physician for this thing, this still seems seriously wrong. The Natropathetic doctor’s theory was that my digestive system was to blame, so she gave me some pills to do something about that. The Dermatologist opted to give me the standard treatment of local injections of cortisone – a steroid that counteracts the work of my immune system, or “shews” it away. The dozens of cortisone shots in my skull actually worked but it was always a losing battle against my unrelenting immune system.
Anger/Resentment (first part of 2010)
One year after The Last Haircut, I was dedicating too much time to rubbing my expanding bald spots on my head and face, hoping hard to discover them filled in. Denial ended one evening when my wife took a picture of the back of my head. As she turned the camera to me, I remember slowly focusing my eyes on the screen to the survey the damage. It was real. She shaved my head that moment (my real Last Haircut) and I got on with being bald, which means shopping for a good hat and reliable sunscreen, and adopting a new level of bitterness.
At this point I was upset and frustrated. I gritted through inevitable discussions about my condition. Undeniably sincere, the act of these discussions frequently compelled the other person to share a theory, which felt like getting the same assignment in a class that you hated, over and over again. I was embarrassed and always on the defense, as I came to grips that the doctors couldn’t just fix it.
Medical treatment: I dumped the Natropathetic doctor at this point but continued the local injections. Soon after, the dermatologist recognized the losing battle, and suggested giving me a topical cream that would induce an allergic reaction on my head. This would give my immune system something to do locally and maybe it would work. It sounded cool – if we were doing it to a rat – but it had a lot of side effects and didn’t seem worth it, so I passed on that and sought a doctor with other ideas.
Depression (mid 2010)
People who know me will say that I have plenty of self-esteem in the tank. At this point I was so tired of talking about it and dreaded the re-indoctrination required with every person I know - the whole thing was just maddening. I felt like I was losing to something that now defined me and I was somehow a failure for it. Also, this era aligns with the final stages of the hair exodus, and I spent a lot of time maintaining the last survivors, notably: eyebrows and eye lashes.
But then I started to lose the eye lashes. Consider this: when you lose a quarter of your eyelashes, do you pluck the rest out? What if they grow back and you expunged the faithful survivors? Then there’s the eyebrows. When do you give up and shave the eyebrows? Awkward decisions to make for sure.
To add to the mix, new hair would emerge from the cortisone treatments, so, basically I was quite a sight and didn’t feel great about it. Overall though, I think I took it well enough, again thanks to all the awesome people and activities in my life.
Medical treatment: I left the first dermatologist for a “top” dermatologist in Portland with years of experience treating Alopecia. I was ready to do anything he said. He prescribed more Clobetasol and Monoxidal (Rogaine) twice a day (topical ointments), along with the standard cortisone injections, this time to replenish my eyebrows, which began to fade for the first time. Getting injections in the eyebrows feels exactly how you’d think.
Acceptance (late 2010 – 2011)
It took one full year to go from normal to bald, and for the the Alopecia to spread from from beard, to head, to eyebrows, to lashes. The day came where I made the call to shave my eyebrows and it was complete. No longer was I trying to maintain something that could fall out, it was all gone. I entered the ‘screw it, it’s just hair’ state of mind and at least not shaving is kind of nice.
Medical treatment: I got deep-tissue cortisone injections in my lower-back/upper-butt area to systemically reduce the work of my immune system along with the Clobetasol/Monoxidal combo for my head. The Chicago dermatologist says that this combo needed a full 6 months before we can determine if it’s working or not. It didn’t. The next step for the dermatologist community is another experiment: this time an off-label use of a drug used for Psoriasis. Pass.
Research for a Cure
So now I’m looking to help out the cause and participate in new treatment options that have no side effects and soften the plight of the next guy/gal who gets Alopecia. With the Global Alopecia Mission, I plan to help market the condition and hopefully I can help eradicate this thing for myself and my new bald friends.