02 February, 2018

“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

32 comments:

  1. Elizabeth Joy StuartFebruary 23, 2018

    Oh, Alexandra. Your blog writing and involvement with social media fosters a sense of intimacy beyond the YouTube or cast recordings I often solely experience with other artists, so I feel, naturally, a bit more personally invested in your life. I also deeply appreciate you sharing your story, while still maintaining privacy and boundaries with the wider world. Your story continues to touch and inspire me. Thank you for being open - and for being an active example of chasing an abundant life! May you experience health and love galore as your future continues to unfold.

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  2. Lindsey BoggsFebruary 23, 2018

    I knew you at Interlochen and not sure you remember me - Lindsey Langham is my maiden name. Thanks for sharing your story and was very inspired by your journey.

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  3. Thomas KearneyFebruary 23, 2018

    Al. I have nothing to add to your plight. I’ve been down that road myself just a few short years ago and like you continued to persevere in spite of doctors telling me I was depressed or if I didn’t shape up I’d be dead soon. You are an inspiration to all who suffer from illnesses that the medical profession does not see often and can’t seem to think outside of the box for possible solutions. Keep fighting the good fight dear friend. ❤️❤️. I’m praying for your continued remission and that of my daughter who has lupus and has gone through hell but is now in remission too!! ��

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  4. Jessica HansonFebruary 23, 2018

    Thank you for sharing this. It's difficult for other people to understand how difficult "invisible illnesses" can be. I also have an autoimmune condition (celiac disease) and am an advocate for that community. I very much admire your work, and it's inspiring to read about how much you've overcome while also thriving in the theatre community. I wish you great health.

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  5. Erica DanielleFebruary 23, 2018

    Beautiful woman! Thank you for your vulnerability! ❤️❤️❤️

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  6. Sandra Dayco-CorayFebruary 23, 2018

    So happy to know you are doing much better health-wise. Very inspiring words. You are amazing!

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  7. Julia HillearyFebruary 23, 2018

    Blessings for your continued recovery & good health, bless you for your sharing & giving & strength. ����������

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  8. Bob Sheehan SrFebruary 23, 2018

    I am so sorry. And you are remarkable.

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  9. You really are an inspiration. No eyes rolling; just an amazing person who has done more in a few years than most will in an entire life. Everyday you should feel proud and I hope you continue to improve. Organizations should have you speak to those who also struggle. Be Well!!

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  10. Congratulations! Thank you for sharing your journey. As a nurse I have seen people with a lot of auto immune diseases over the years and they think they are the only ones. By speaking out I hope many of them will realize they are not alone in fight.

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  11. Distressing to hear that you had to be carried up 4 flights after doing 2 shows of Fiddler. How did you get through the run? Hope your good health continues from now on.

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  12. My dearest Al, my heart is breaking to read this. Of all people, you did not deserve this. You are so good and talented and compassionate. I wish and pray for you continued health and happiness. Thinking of you...✨��✨

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  13. Love you, kiddo. You have shown bravery and grace through many trials, and I am SO proud of you!!

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  14. Ben MichaelsFebruary 23, 2018

    “When the Student is ready, the Teacher will appear”. And so it was..but who knew you’d keep teaching me months after the “classes” were over (thank you, FB!)? You’re one hell of a lady, Al. I’m honored that you’d shared even a bit of the story with me during our sessions; I’m humbled and inspired by your strength; and I’m hopeful our paths will cross again sooner than later. G-d bless and keep you strong and Healthy, my friend.

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  15. Obviously I had no idea, that’s the point of your post. I have a similar story with auto-immune disease, and it’s a relief to be out the other side, or least have some respite. Xxx

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  16. Love you, fellow spoonie.

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  17. I've learned to take your advice very seriously, since it has always been offered with such heartfelt and piercing insight. Plus you are invariably right. So my heart missed a beat when I read you telling us "I am not remarkable." The only way that makes sense to me is that I know you are so very humble deep inside. Yet that makes you so very remarkable. Thank you for sharing this with us. I am sad knowing that I couldn't do anything to help you though this, as much as I am now relieved and happy to hear that you are now in remission. Sending you good thoughts on wings.

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  18. Kristin Getchell EveyFebruary 23, 2018

    Ok. Now you’re super hero status in my book. I mean look at all you accomplished - and up against all of those health trials. You are so incredibly strong & inspiring. I’m so happy for you that you’re in remission! You got this Super Woman! ����

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  19. Dear lady, onwards with courage for sure! Congratulations on your remission ❤️

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  20. Frank A. JohnsonFebruary 23, 2018

    Al, saw you in Love Story at the Walnut and loved you ever since. Amazing how you have performed with all of this going on within you. Shows your grit and highlights your talent despite adversity.I hope you continue to heal, feel better every day, get strong, gain some good weight and wrap yourself in happiness. Looking forward to seeing you again someday. BTW, you look good naked, classy!

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  21. Allison Paynter HastingsFebruary 23, 2018

    My daughter will be in your master class on Saturday. She suffers from horrific migraines that have made her miss so much. She adores you and is so thrilled to have the opportunity to meet you and spend time with you this weekend. Thank you for sharing your struggles and for inspiring my sweet gir

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  22. Vic ManzellaFebruary 23, 2018

    Thank you for sharing! All the best. Sometimes- it takes another person’s “ story”, to place things in perspective

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  23. Bronwyn WoolmanFebruary 23, 2018

    And look how much you have accomplished artistically during this difficult time. Prayers Alexandra!

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  24. Alice PérezFebruary 23, 2018

    I hope to meet you one day, you are my idol, I had always admired your work, your singing now you are definitely my role model, you are a warrior, I hope to be as strong as you one day. You’re amazing!

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  25. Your journey is and has been a true inspiration to many. So proud of you and for you... ��

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  26. Jeffrey SmithFebruary 23, 2018

    Shocked. Devastated.And inspired.
    Stay Strong.Much love and admiration ❤️

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  27. Aaron GriehsFebruary 23, 2018

    That's great news. So happy to hear that. You are an amazing person. Will always will be here for you for anything no matter what luv ya.

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  28. Brian Allan HobbsFebruary 23, 2018

    You are so brave and so strong. Thank you for sharing the deepest part of your soul in your self and and your art. You are a true rock star

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  29. Robert LoBiondoFebruary 23, 2018

    Oh Dear Lord, darling. You are such an inspiration. <3

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  30. Stephen JohnsFebruary 23, 2018

    From you: SO much strength; From me: SO much respect. ❤️��

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  31. Amazing lady....sending you so much love xx

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  32. Thank you so much for sharing your story. Every time I read something you've written or hear something you've said, you become more of an inspiration to me. I've had my fair share of health issues recently, and it's so inspiring to see someone as amazing as you overcome ❤

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