“Health-i-versary!”

Today is my 6-month “Health-i-versary.”

What does that mean..?

Hello. My name is Alexandra Silber and I have an auto-immune disease.

So what does that mean..?

The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them.

In an autoimmune disease, the immune system mistakes part of your body — like your joints, thyroid, pancreas, colon or skin — as foreign or contaminated. Thus, at its simplest, an autoimmune disease is when your body's immune system (usually there to protect you from disease and infection) over-reacts and instead of attacking diseased or unhealthy cells, attack the healthy ones (including tissue and organs) by mistake. This over-reactive response is like a broken switch: once the alarm system is turned on, it difficult (and sometimes impossible) to turn off. The body releases proteins called autoantibodies that attack healthy cells ad infinutum—the attack upon the healthy tissue continues on and on until the tissue wears away and the organs start to fail.

Doctors don’t yet know what causes the immune system misfire. (which is...not...awesome...). Factors that make an individual susceptible can be based on family history, gender, ethnicity, diet, and lifestyle; but also, due to the incidence of autoimmune diseases dramatically on the rise, researchers suspect cultural and environmental factors to possibly be involved.

Initial symptoms can be sneaky and vague at first, and in today's "power through" culture, they can be very easy to ignore until it is far too late. May I recommend, from experience, to... not do that. If you have any sudden changes in your overall health (however mild, and whatever it may be) track your symptoms, ask about family history, do an internet search (or three), and get thee to a doctor! Then? Get a second opinion. (For a basic guide to more efficiently diagnosing an auto-immune disorder try this link.)

Some autoimmune diseases target only one organ (Type 1 diabetes, for example, exclusively damages the pancreas) other diseases, like lupus, affect the whole body. There are over 80 known autoimmune diseases, many with similar symptoms, which can make them difficult to diagnose and treat until the symptoms are severe. It is often a challenging trial-and-error of medications, major lifestyle changes, side-effects and possible surgeries.

2013: the start of my health journey to MORDOR.

I won't go into detail about my specific disease and the nitty-gritty of its consequences, but I will tell you that over the last few years, my health journey has brought me to:
- 11 colonoscopies
- 3 surgeries
- 2 blood transfusions
- 2 iron infusions
- 1 near-death experience
- 9 medications (including chemotherapy and the life-saving but life-ruining drug prednisone)
- 4 hospitals (including a trip to the Mayo Clinic)
- countless side effects
- and over 16 different doctors—
and today, this health-i-versary means, that, I have been healthy for 6 months in a row—for the first time since 2013.

I’ve lost time, sleep, my beloved hair, my singing voice, my dignity, my personality, so much weight, foods I loved, many friendships, important relationships familial and romantic, and some very real innocence; but I’ve gained an appreciation for being alive in ways I lack language for.

Today we often only choose to share our joys on the internet and social media. Trust me when I tell you this has been a terrifying private journey, one filled with so much uncertainty. I have not had answers to so many of my health questions, thus did not feel confident sharing the truth in its entirety until I was more confidently on the other side. (I also did not want to court anyone's rogue advice—however well-meaning!)

Today, in this joy I also admit the very real struggle, but the exhilarating triumph of a fight well won. There is no cure for an autoimmune disease, but remission is possible! Today, I’ve achieved a 6-month version of that. Now it’s about maintaining it. 

This health triumph would not be possible without my main (SUPERHERO) physician, Dr. Steven Fochios, the Mayo Clinic, Mount Sinai Hospital, my incredibly brave mother, a sense of humor, and a very small circle of friends who knew (and bore witness to) what was actually going on. Some of these people held me while I wept, helped me change my diet, stayed awake with me all night, and once, even carried me up the four flights of stairs to my apartment when I was too weak to walk after a two-show day at Fiddler on the Roof on Broadway. 

Dad.

I also felt extraordinarily close to my father during the darkest days. What I endured is likely 1-1000th of what my father had to physically and mentally go through, and I do not even have a spouse and child to leave behind should I not survive. But the uncertainty, the physical pain, the endless tests and hospitals and unknowns... I experienced an empathy for what he went through in his last years, a full immersion of understanding I feel so grateful for. What my father fought for, fought against, what he physically did and endured to remain alive in the face of unnameable uncertainty is something I now understand in my marrow.

Whoever you are, no matter how low, know this: being fully alive is worth fighting for. I had no idea how much I wanted to live until the option of not being alive was truly presented to me. "Okay Al," said Life, "You wanna be here? Act like it." So I did everything in my power to do just that. (This is my gentle reminder to... stop "powering through" and maybe go to the doctor like a damn adult.)

Don't get me wrong. I lost many things—friendships, (not-cute amounts of) weight, my precious hair, a very important relationship, dignity, inclusion in social events, money, probably some people's patience, understanding, and respect.

But I also did some extraordinary things while ill—sang at Royal Albert Hall (twice!), and San Francisco Symphony (twice!), Carnegie Hall, Caramoor, Disney Hall, did a solo show for a week in London. I rehearsed and opened a 3 hour Broadway musical and consistently did 8 shows a week. I taught time (and overtime) at Pace University (and even continued to teach during the run of Fiddler...WTF...), staged two readings of my adaptation of Antigone, recorded the Arlington cast recording, sold two books—a novel and memoir, and published one (the other soon to come), and all the while managed, somehow, to stay awake, not to die and even keep a few friends and not kill my cat. 

Show up.

 I say this to merely share this simple truth: we are limited in life only by what we believe we are capable of. I know I know, I can already see you rolling your eyes over there! But reader trust me: I had days when it hurt to breathe. When I could not physically stay awake for more than 3 hours at a time (no amount of coffee or sugar would fix this level of medical fatigue). Days when I could not stop shaking from the intensity of the pain. When the weakness and starvation I experienced were so intense I lacked the capacity to even shed tears or cry out. 

But reader? I showed up. To work. To life.

I am not remarkable. No. I am a human being just like you—capable of everything from the most deplorable of errors to the vastest glories. As are we all.

But when we stare down the black infinity of not being on earth anymore, we experience the most considerable democracy of all: the democracy of mortality. We all—no matter how wealthy, beautiful, talented, kind, willful, adveturous—die. 
We all die. 
You will, someday, die. 
And in the end, we all must face the same questions: 
Was I brave? 
Did I use my gifts? 
What did I believe in? 
What did I stand for? 
What did I stand against?
Did I do what truly mattered?  
Did I say yes to life? 
And above all, did I love enough? 

As mentioned before, there is no cure for autoimmune diseases—only remission and maintenance. But know this: though there will be setbacks, I look forward to many more healthy, fully-lived, days to come. 

Onwards, with courage and integrity.

©Emma Mead