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12/14/2021

the first gift my Patrons gave to me

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🎶 on the first day of christmas,
my patrons gave to me
an electric wheelchair and a day that was guilt-freeeeee 
🎶

I have incredible, immense guilt about being disabled and the burden it puts on my family (re:Gage, specifically).

I'm gonna unpack this briefly, it could be (and I'm sure at some point, will be) a post on it's own.

There's many facets of being chronically ill; there's no respite. Not for the person who is ill, 
nor for the caregiver. Neither one of us can help or change the fact that I am sick. No one is to blame. There is no reason for it other than faulty genetics and no option other than to live with it as best as we can. So we do.

But that does not mean it is not exhausting, and draining.

Draining: mentally, physically, emotionally, financially draining, to be ill, to take care of someone who is ill. It's no one's fault and we roll with it.
"The gift that my Patrons gave me is freedom and relief.  Freedom from the anguish of my financial strain.  Relief from an expense that was not planned for, is not regular, but is very real.  This month, a wheelchair rental.  Perhaps next month, [...] my chiropractor."
The personal aspects of this: mental, physical, emotional work that goes in, I can roll with. Gage can roll with. We do it together, we grow and we stumble and fall and tug each other out of the mud, wipe the dirt from the other's face, and keep trudging. We do the work. We talk together.  We go to therapy: apart and grow as individuals, then reconvene to share our growth with one another.  I get real weird and introspective and wordvomit all over him, and on the off-chance i shut the hell up for two seconds, he provides his own insight. We can get through those aspects together: mental, physical, emotional exhaustion and rebuilding and time off.  We can roll with it. I can roll with it (mostly).
I cannot roll with the financial factor. It breaks my brain.
Mmm, internalized late-stage capitalism, the healthy way to start your day!
Again, this is getting to a point where I... it's so much larger than this.
​
the cost of terminal illness. That's it's own Thing, it's growing in my mind, honestly so much so I'm terrified i don't know how to harness it with words.
​But I'll figure it out.
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This electric wheelchair.  My Patrons, they paid for it for me.  They made the smile on my face possible; y'all that is genuine relief and gratefulness.
Because when Gage and a park employee found me where I was resting, waiting for the wheelchair, and I signed the rental forms, it was the first time I'd ever rented an electric wheelchair.  We did Busch Gardens two months ago, during Howl-o-Scream.  We brought my personal wheelchair, which is not electric.  .... there's a lot of hills and walking.  It's a lot of pushing.  We're going to rent an electric one next time, we decided.  (Physical exhaustion, emotional guilt, mental gymnastics everywhere).
PictureCake snapped this picture while waiting for Gage to come find us. There are also several pictures of sheep's butts; you can see the shadow of their fence behind her.
And I don't know why or how, but somehow the idea was given to us that it was only like, $25-30 for a rental??
it is not.  it is eighty dollars.
... is this a lot?  I feel like this is a lot.  Part of me feels like, yeah that sounds about right, but mostly I feel like this is just asinine I am already strugglefucking to be here, I just really want to be able to have a good day with my family but the shows are all over the damn park and now it costs me an additional eighty dollars just to be able to move functionally. This is no one's fault.  The park provides a service, it costs a fee.  I understand all this.
But it is financially and mentally exhaustive.

Let me bring it back to the goodness, the light, the beautiful sheer excitement that brought that smile on my face.  Because when Gage told me it was eighty dollars, and this was just the beginning of the day, we haven't bought the snacks and the souvenirs and what-have-yous, I gasped.  I cost us an additional eighty dollars.
​

The day before, I'd had two new Patrons make pledges.  And my payout at the end of this month, currently, will be at just over eighty dollars.

​"My Patrons paid for my wheelchair," I say outloud,
and the wave of relief that I felt rush through me...
My Patrons paid for my wheelchair.
Thank you.


(like yeah  if you want to get into like the sematics about it, did they specifically pay for the wheelchair, nah not technically.  That went onto gage's card, whereas i won't receive my patreon payout until the end of the month, so the money technically doesn't exist to me yet, and when it does, it will first go into the accounts of the creators I am pledged to, and then it will go into my account, not the one that gage used to pay for the wheelchair.  ​but meh like i said, sublantics.)
The gift that my Patrons gave me is freedom and relief.  Freedom from the anguish of my financial strain.  Relief from an expense that was not planned for, is not regular, but is very real.  This month, a wheelchair rental.  Perhaps next month, I'll return to my chiropractor for the first time since COVID first hit two years ago how-- and maybe he can get rid of the unnerving jolting sensations I have been experiencing nonstop, wave after wave of electrical buzzes in my body.
This month a wheelchair rental, next month the chiropractor, the next, continuance of care with the chiropractor.  Or massage therapist.  Or a lightbox for the crippling seasonal depression.  The daily vitamins that seem to really help, but are more expensive because they're the gummies.  But they work.  But money.  It's okay Erin pay the ADHD tax.
do you guys know this term?  i love it, it's helped a lot with the mental gymnastics.
My patrons are gifting me the ability to stomach the ADHD tax.  Because it's a real financial drain.
All the things that I could do that could help me in my fragile body, they have a financial cost. 

But so does food, so does my daughter's extra curriculars, so does ordering delivery when I am too sick after grocery shopping to cook, and too tired the rest of the week still, and the pets need food and litter---
my house is a mess but i cannot physically clean.  i could hire a house keeper, i could hire a cleaning service.  that would be beneficial, and that would be another financial drain.

the gift that my patrons are giving me is freedom and relief.
thank you for your patronage.

thank you for seeing me raise my hand for help and grabbing ahold and squeezing me tightly.
thank you for hearing me point out the flaws in the system, and instead of saying "oh damn, that sucks," you said "here, let me help you with that."

and even if you aren't a Patron.  this is a post to thank my Patrons, but it is not to make anyone feel guilty because they haven't pledged or whatever.
If you are here reading this, sharing this, feeling my words and experiencing the journey alongside of me, I need you here alongside me just as much, and I am just as grateful for you.  Thank you, my reader, my friend.  ​

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What is Patreon, Why support?
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    Erin is a 31-year-old bi-racial queer woman living with stage iv neuroendocrine cancer; she has been with her husband for sixteen years, and they have a seven-year old daughter together.  She approaches the world through a sociological lens, and writes about her experiences in terminal illness, parenting, love, and friendship; she strives to speak to the connectivity we share in the day-to-day wading through of everyday life.

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