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Why I’ve been away from Vocal

by Cereal Oatmeal about a month ago in family
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An update on my life and the lives of those I care about.

A picture of me and my grandma lying side by side on her hospital bed the day she was released from the hospital after surviving a stroke. She is smiling comically with her eyes wide. I am also smiling but have a face mask on.

Hey everyone. I’ve been trying to write this for a while now, but wasn’t sure how to.

When I first found Vocal I was excited and couldn’t wait to write for every challenge that struck my fancy, to be creative and join the community. And I tried to, I wanted to try and make an effort to attempt any and every challenge, just to reawaken the love I’ve always had for writing.

Last year, September 26th, 2021, my grandma had a stroke. She survived it and for a while was doing a lot better than any stroke survivor usually would. For a while I thought and hoped she’d have a miraculous recovery and would be totally back to normal. But these recent past few months (starting in particular around March I suppose) she’s gotten worse and worse. I have become her caretaker over these past months.

I am Autistic and I was basically raised by my grandma. She’s been my protector and my best friend my whole life. She raised me with so much kindness and caring and understanding… She accepted that I was different and actively encouraged me to be entirely and truly myself every step of the way. She is the reason that I’m proud to be who I am today.

She actually, for many reasons, legally and officially adopted me months before the stroke, so technically she is my mom. For the sake of being understood though I’m still going to refer to her as my grandma. I’ve always called her Mawmaw and I always will.

I’ve struggled since I was about 5 with death anxiety, and I’ve always worried about losing her. I was finally getting better, thanks to therapy, just before she had the stroke.

I have been caring for her with all the love and attention she has always given me for my 26 years alive and that’s why I haven’t been on Vocal in a while.

I see the challenges and I think about continuing Svalbard’s story all the time.

But I haven’t had the time or energy to even attempt to.

I applied, at her request when she first started needing extra help around the house, to be her caregiver officially, like as a job with income and benefits back in December.

I applied to something called Structured Family Caregiving, which she’s qualified for under Medicare.

It’s been months since I was approved and submitted my paperwork and I still am not getting any pay or anything. They are apparently working on it and all I can really do is trust them and continue caring for her to the best of my ability but I do want you all to know where it is that I stand financially right now.

And why I’ve been so overwhelmed and overworked.

I have been her caretaker almost entirely on my own for about 8 months now. With very little help (some from my mom and some from my very wonderful and awesome friends when possible but for the most of it I have been alone.)

Unfortunately as life seems to tend towards chaos rather than order, a lot of other horrible things have happened in the interim.

A few weeks after my grandma got out of the hospital, sometime in October, my older brother who had gotten Covid, died.

And a few months later in January, my other brother died from liver failure.

I was adopted before by my grandma’s daughter, who is the person I refer to as mom, as an infant and her sons were significantly older than me so I wasn’t as close to them as most are to their siblings but it still hurts… It is still a loss that blindsided me and my family. I will be posting separate stories and or poems to… commemorate their places in my life at a later date.

April 27th of this year our cat of 5 years died to complications with lung cancer and FIV. He was this perfect being in our lives and losing him was really hard for my grandma and me both…

I’ve lost and lost and continue to lose.

I also… I don’t want to go into too many details about this both because it is family drama and for my own safety, but there are in my family extended family members who have always disliked me, who have been jealous of me or have had prejudices against me even when I was just a child.

Two of whom in particular who have made threats on my life and who have harmed me both verbally and physically in the past….

They have been… very actively angry at me lately. Blaming me for my grandma’s stroke, telling me that I’m not doing enough for her, etc.

Luckily I don’t live with them but they do feel like it’s their right to just come over to our house whenever they want, to threaten me and yell at me and push me around with no care at all for how it could negatively impact my grandma.

They’ve also been harassing and threatening my mom (my grandma’s daughter) simply because she stood up for me against their onslaught of abuse. My mom and I haven’t always had the best relationship but she by no means deserves any of that. None of us do.

It’s been… an added complication to an already stressful situation.

My life has become an endurance test. An agility course of anxiety and sorrow, and I am trying to clear the hurdles and still come out with myself and my loved ones intact.

So… that’s where I’ve been. That’s what my life has become. I know I have followers on here, people who genuinely like my writing and who I assume would like to see more of it. I will be uploading a few things, possibly tonight. They will likely mostly be sad poems, which isn’t exactly my usual writing style as I try to be a very happy and hopeful person but I also process my emotions best with my writing.

I hope you all can get a glimpse into my life, see my love and caring for those who are or were precious to me, understand life from my perspective and perhaps for those who are dealing with similar situations, find solace and comradery.

My grandma is still here with me, in fact I am writing this on my phone from her room, while I watch over her and she rests, occasionally waking up and asking me for water. But grief doesn’t just come from the loss of a life, but the loss of our shared experiences. She hasn’t been herself lately, her ability to talk and communicate has been hindered by the stroke.

The one thing I miss more than anything is talking to her. Like the little boy in Artificial Intelligence, I’d trade every single second of the rest of my life just to have one day to talk to her like we used to.

We’d talk for hours about life and death and everything and nothing, back before the stroke. Even after the stroke for a while there we’d still talk.

She’s who I’ve always gone to, to seek council. And now…Well, I still talk to her, and I know and can tell that she still understands me, but she has marked difficulty responding. Her responses rarely make much sense, even though we have built up our own language, even though I can generally understand what she means more so than anyone else, I still miss being able to ask her for advice and getting a solid answer.

I’m sorry this update is as sad as it is, and as late as it is, but at least it’s an update and an explanation for where I have been.

I don’t usually do this but I am genuinely concerned about my financial situation, I have no income whatsoever right now, and very little saved up, under $100.

We have been surviving off of the small amount my grandma gets from social security. And by surviving I mean it’s been just enough to pay our utility bills and mortgage.

I luckily qualified for EBT, so our groceries are covered for now, but we aren’t able to buy everything with ebt. (Diapers and wet wipes in particular)

I’m not able to get a job while caring for her. I wouldn’t be able to care for her and work a job anyway and if I had a job I wouldn’t qualify for SFC. Technically caring for her is meant to be my job but like I said, I haven’t gotten anything from SFC.

So tips and shares would mean so so much to me right now.

Even if it’s not this story you share, sharing any of my stories would help. I haven’t gotten many views on any of them lately since I’ve been inactive for so long.

I didn’t write this all down to be some fundraiser, I just wanted to give an explanation for my absence and a heads up before I started posting a lot of sad poetry and stories.

Despite our financial struggles I’ve (mostly with the help of my friends) kept my Vocal+ subscription because I believe in my writing and I adore my stories, and want to keep being a part of this community.

Anyway, thank you to all who read this.

family

About the author

Cereal Oatmeal

Autistic, Pan, Trans

I use all pronouns including neopronouns!

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