Things I Miss: a List, Part 1

Jake. Gone too soon.

- Our beautiful ginger cat (who came to mom and I after Papa died), Jake. He was "The Man" of the family and an absolute sweetheart. Gone too soon at only 7. 


- Answering machines (and their answering machine messages)

    We had a particularly spectacular one in the 90s. I wrote the lyrics and sang it at the age of 10 or 11? Not sure. It was performed at 100-no-marking (obviously, some things never change) to a karaoke CASSETTE of the theme song from “The Addams Family. I then leisurely popped that masterpiece into our answering machine and used it as our answering machine message for OH, maybe nine years? Like, even when my Dad had cancer.
The lyrics went like this: 

    “You called us when we weren’t here
    but there is no need to fear 
    we’ll get right back to you, dear
    The Silber Family. 

    Oh 647-6759
    we’re sure to call you back on time
    and it won’t even cost a dime
    The Silber Family — WAIT FOR THE BEEP
        *snap snap*

    People used to hang up and call BACK to an encore. I vividly remember my Dad’s oncology nurses calling back and hearing nothing but their collective, explosive laughter. That was nice.
    It’s about as famous as I could ever feel at the time without being a creepy child actor. Because I was VOICEMAIL MESSAGE FAMOUS.


- Handshakes 

- Combing the shelves of Blockbuster and picking out videos to rent (and probably picking up some RedVines, let’s be real…)

Fetzer.

- Sometimes, my long hair 

- My friend, David Fetzer (and holding his hand which fit so perfectly in my own)

- Trick-or-treating

- Dad. Always.

- This particular version of myself:

The “HOPE-O-COASTER.”

 Here we go again. These are (just the *non hospital-administered*) medications associated with my auto immune disease: Ulcerative Colitis.

One of the leading causes of flareups is stress, and despite “doing everything right,” the stress of a global Pandemic has me flaring—and out of remission—or the first time in years.

To say that I’m heartbroken, crushed and disappointed...is putting it mildly. The excruciating physical symptoms and side effects of the drugs are *nothing* compared to the emotional “HOPE-O-COASTER.” Nothing compared to living in a constant state of health-related vigilance married with hope... followed by what feels like crushing “failure” when a proposed solution doesn’t work out.

But I am not a failure! And I share this today because if YOU are living with chronic illness and experiencing setbacks—NEITHER ARE YOU. These were challenging times even before the Coronavirus pandemic, and no solution is one size fits all. The human body is a miracle, and can also be a great big jerk! It’s both. It’s all.

Normally I would keep this information private, but I realized years ago that when I shared my #autoimmunewarrior journey, SO many of you out there were/are suffering in silence all alone (just like I used to!) —out of shame, embarrassment, and fear of being misunderstood or losing friends or work opportunities. I am here to de-stigmatize.

I’m here to tell you: YOU ARE NOT ALONE. I am not ashamed of what my body does against my will. I am still loved, I can still adore and support my friends; AND, not only can I still work, but (if I may say so!) I am crushing it! I have discovered unknown strengths and grace! 💪🏼 I don’t think my current colleagues would know a thing was wrong with me if I didn’t inform them because Chrons and colitis is manageable and can even illuminate untold levels of integrity and capacity.

I am HERE. I am ALIVE. I am THRIVING inside this. 

And so can you dear fellow warriors. 

I love you.

Finally, auto-immunity compromises the immune system. That makes me (and all others like me with all auto-immune diseases) in the high risk group for COVID. Please think of me when you wear a mask.

 

Things I want to remember about this week 8/10 - 8/17, 2020: A List

 - Leaving a Pittsfield Mass Walgreen and seeing a man with a baby stroller buying 27 cans of Fruit Punch flavored Arizona ice tea… and in the baby stroller was not a baby? But a CAGED SQUIRREL

- Talking with Alec about expanding buying a car! (An adorable vintage 1985 BMW 528e we are named Brunhilde thankyouverymuch)

- Hearing the story of Alexandra and Etai getting engaged (eeeeee)

- The appointment of Kamala Harris as Joe Biden's 2020 running-mate. (HERSTORY!)

- SINGING IN A REHEARSAL ROOM FOR THE FIRST TIME SINCE MARCH 13 2020 and having absolutely zero words to describe the 10,000 sensations. 

One second it’s:

“OH MY GOD THE THEATRE!!!!”

The next:

“This isn’t the same... will it EVER be the same?”

The next:

“But I’m HERE!”

The next:

“Will I DIE?! Is this safe?"

- COVID-negative approved HUGS

- The extremely grouchy man at the wonderful Round Tuit

- Face-timing with Katie and Alan and Tom 

- Drinks and deep talks with Alysha and Storm (defining the very special joys of out-of-town theatre)

- Socially-distant visits with friends I haven't seen in what feels like years! 

- Making art. However cautiously. 

- Bringing my vocal chords together to make music. Incredibly emotionally.

- Parting from Alec for the first time in 145 days (and when we parted, weeping like a toddler being dropped off on the first ever day of school)

Truly: WTF.