|Daisy; like an invisible illness don’t let her fool you
Just taking a toddler nap
One of the immeasurable losses of having Myalgic Encephalomyelitis is imaging all the people I would have met without this illness. I miss knowing the person at the local coffee shop, I miss the bartenders that always seem to grab me extra food from the places I frequented. I miss the grocery clerks the hairdressers the friend of a friend you may have run into at those places. I miss being missed.
The age I have been down and out has spanned a time where most of my friends communities have expanded. They expand through a marriage, a career, neighbors and children. Yet my world has closed in on me. I am receiving high school graduation notices from my previous life inner circle and these children I barely know. Some I have never met except before they can remember. I am a mirage. I feel often as I exist merely in an abstract way the way unfortunately often the elderly are looked upon; as this life of solitude defines their existence. What is most upsetting is I would have known these children now nearing adulthood because I would have traveled. I would have shown up. I would have loved to be present. It’s not that I didn’t try; I could only try so much.
This leads me to the situation at hand; Instagram. I left Facebook a few months ago for good. I finally walked away from the empty promise of we will be better next time. I received some hateful messenger because I dared to use a Tom Hanks quote and don’t follow QANON to know he’s a known child abuser. Also, I found it just too painful. I got the jist people want to like happy things but anything that seems to matter to me went silent. So I was a bit shocked to find I enjoyed Instagram. One of my helpers ( lol one that quit because well; I was too difficult ) had asked if she could set up an account for Daisy. She was caring for her a lot and spending the nights when Daisy was a puppy. And as a 21 year old she wanted to share this little darling puppy. So I said sure; in my head thinking it was absurd and probably an eye roll...I wonder why she quit...
Then I realized it was kind of like the new version of People magazine. I don’t follow a ton of people by Instagram standards is my guess and most I don’t know. But oddly some I came to know and in a much more meaningful way than I had ever expected.
I also ended up finding one fierce and bold ME/CFS or MAST cell or fill in the blank chronic illness community. Unlike FB where people discussed treatments or advice these were chronic illness influencers and they weren’t messing around. I learned words like ableism and dynamic disability and don’t you ever tell me to do yoga or suggest treatments because it’s harmful - we live this support don’t doubt. One of my recent favorite quotes was “if you can change your diet consider it a privilege” I was blown away - ugh these were my people. They weren’t having any of this being treated less than. Be better; learn. And here I was learning from this younger oddly often European “Kids” that I myself was an ableist. I was discriminating against myself and I had taken way more emotional harm than I deserved. I didn’t know any better. I was learning an entirely new way to be within this diagnosis. At times I cry because I don’t want to viscerally understand their stories, their messages. It still is a double edge sword but it has done way more good than harm. And I am so thankful for their community. And begrudgingly had to admit I know them all I needed was the mirror.
Simultaneously it has been a crazy time; a confluence of events were happening the world was living our world. Shut down. Told no. Physical discomfort ( if we really can call a mask a hardship). Those everyday interactions gone. The isolation concerns about it and all of a sudden the world found a way to open up in a way it hadn’t ever before. So your world got smaller and I finally could “attend” more events more concerts more gradations than I have in the last decade.
So this brings me to Tally Sessions. Some of you may have gotten an email, text or message from me asking if you would donate to his GoFund Me page to help save his mother’s home. I “met” Tally because I happen to follow Selma Blair on Instagram; one because she exudes that born cool and also to follow her coping and living with Multiple Sclerosis. I believe it was there I saw her like or share a post from Amanda Kloots. Amanda’s husband Nick Cordero an actor and musician was fighting for his life due to COVID19. You can read her story hereLive Your Life; Loving and Losing Nick Cordero. Amanda met Nick on Bullets over Broadway and started this rallying song at 3pm singing Nick’s song Live Your Life. I will say I often watched but I am no fan of the selfie let alone self singing but hundreds would join in; the most ardent cheerleader fellow Broadway actor Tally Sessions and David Josefberg. The two of them would sing and dance often over zoom their hearts out hoping their dear friend Nick would wake up. I began following them both. Tally more often as he was always so full of joy and life. Life; something this past year has seemed elusive. My health declining combined with the stresses of covid for everyone his page always seemed to make me smile.
And all of a sudden I felt like I had a little community again; many of these individuals I have never met most never will. I had stumbled on to a very obvious way to expand my network. To have interactions with a world bigger than my own. As I followed Tally his journey took a turn I hadn’t known prior; his mother was battling stage 4 cancer. He took her to her appointments and didn’t over share just used social media in the best way possible to spread some love make some laughs and make a clearly difficult situation have a bit of levity. I adore Tally Sessions. I began looking at some of his Broadway clips and his voice blew me away. I wondered was there anyway I could adopt an adult son that someday would care for me the way he cared for his mother the way he rallied for his friend? Clearly a Broadway Actor would be hit extremely hard economically during COVID. Which leads me to about a week ago when his mother’s chemotherapy needed to end and hospice to begin he did what was clearly painful for him; he asked for help.
It is really hard to ask for help. But in typical Tally fashion he did it with such Grace and Humility and at the core to give his mother some peace; to save their family home. And you know what he is almost there...a $150,000 loan that will be due upon her passing is under $5,000 away from the goal.
I hope after I finish this and check again like waiting for an exam grade to be posted outside your college room door that the goal will be reached.
Tally’s mother passed this morning. She was peaceful surrounded by her beloved sons. She will rise up if there is another land with Tally’s father who he lost when he was just 20 years old. I cried.
Perhaps pre pandemic this would all sound strange to you all. But I’m guessing you have a bit of a better understanding to what it feels like to have your world shrunk in size. I have pushed away the idea of an online community for a very long time because it felt like I had thrown in the towel. I had no interest in getting to know others with my illness I don’t want to be in their club; but I have found a lot of badass well dressed don’t mess with me allies.
While most days I grieve my old life with pain I can’t put into words. As time goes on I get less comfortable and more exhausted by the longevity of these circumstances. However today I am grateful. Today I will find the silver lining that without this online medium I wouldn’t come to know this amazing human with a big voice and deep heart; who is grieving something else completely. A grief that I am so blessed to not yet encountered; being on this earth without my parents. Today I am grateful for the friends I wouldn’t have met most likely without this illness and they are weren’t my idea of what friendship and community looked like I’ve dipped my toe and the water is refreshing.
Rest in Peace Bert. You raised one amazing son.
|This just happened
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