Alright, I’m going to start off the trend of “2023 memoirs” as people do at the end of the year.
I still have an my dreams. I want to create an animal sanctuary/rescue in the country called Quokka Community, and my plans just keep getting bigger and better. They even include hiring people with disabilities who would have a hard time finding jobs elsewhere. I want to have unlimited amounts of fur babies rubbing up against my legs and meowing at our licking or nudging my face every morning. I am working on becoming a Nationally Certified Teacher of Music. I still would love to work at that Minneapolis Public School in Special Ed. That was my dream job, along with teaching piano lessons on the side. I want to hand out Subway gift cards to people without homes so they can eat good food. I want to write books and perform Piano pieces I love and practice everyday to give me life.
I want to change the world.
Those are my dreams.
But they aren’t my realities, and lately I’ve been pondering the differences among contentment, letting go, and giving up.
… Because right now, I don’t think most of those can ever be my realities again.
(There are a couple I still have but are very minimal, like Piano teaching and NCTM certification.)
Let me tell you about my year. It started out with me writhing in unbearable pain from endometriosis. The cramps, the bleeding, the pain, the fatigue were inexplicable because they were so horrible. So I had a surgery to remove the scar tissue and a hysterectomy and appendectomy.
Got rid of that stuff. Check.
4 days later a seizure and a hospital stay.
1 month later my rabbit died and my friend died.
And all this time I can’t work because of the pain and then the surgery recovery.
So I started teaching piano just a tiny bit again.
It wasn’t enough to pay rent. It wasn’t enough to buy food for my pets. My energy never bounced back, so I couldn’t clean my apartment or care for my pets properly.
I was certified disabled and got my CADI waiver FINALLY, which qualified me for long-awaited PCA services and funding for survival.
I knew I had to move. But I had nowhere permanent to live for 2 months. After literally over 100 phone calls, countless tours and mistakes from so many employees saying they had the kind of housing I needed but didn’t, I finally found housing that provided supports.
The best thing that happened to me this year was finding the housing community I found, where I get the equivalent of PCA services everyday, most of my rent paid for, plus with my other benefits I don’t pay for food, I get homemade meals delivered, I go to places that give free clothes and items and pet food and cat litter, I get free cell phone service, I get free rides, including to medical appointments.
I’m finally stable. 🥲 DO YOU KNOW HOW AMAZING THAT FEELS after you’ve been wondering if you might be sleeping under a bridge in a couple of weeks? Do you know how thankful I am, after thinking I might have to give all my pets up?–and I can’t even explain how much they are my family, what I get out of bed for, why I smile when I’m sad. Do you know how glad I am, after trying to sell anything I could, even if it was precious, because I was trying to keep my furry family together for one more month of rent? And it might get even better if I get Social Security Disability, which I’m working on.
So, my basic needs are met. Finally. Thank you God.
And still, my energy never recovered. We’re not talking being sleepy here and there. We’re talking, if I go out for coffee with you, I have to rest afterwards. If something really stressful happens, I might have a crash. A crash means I have to sleep for hours to recover, and I might not even recover that day. If I take my dog on a walk, I definitely have a crash. If I do something for 6 hours without a break, I’ll for sure crash and probably get sick. I did a craft fair in November and was recovering for weeks.
So I got diagnosed with Chronic Fatigue Syndrome. It’s not curable. You have it FOREVER.
Forever… Like, I’ll probably never have the energy to work at my dream job again. I’ll probably never have the energy (let alone the money, since I can’t work) to open Quokka Community. I can’t have all the friends I want because I don’t have the energy for them. I can’t volunteer at church very much because I might be sick the week I promised to do something. I can’t hand out Subway gift cards to homeless people because I don’t have enough money for my needs, let alone theirs. I can’t get fit at the gym because you’re literally not supposed to exercise with CFS. I can’t have all the pets I want because I live in a 2 bedroom apartment.
I told my friend that life feels like a stupid crane game sometimes. It’s like I have more dreams than 10 people combined normally have, and the crane claw can touch them but can’t ever quite pick one up to realize it’s potential.
It’s a lot to process. If you got this far, I appreciate it. I know it’s a longer post.
Here’s to a more stable, possibly happier 2024. 🫂
If any of you need some of the help I mentioned please reach out. I love it when my pain helps you because it feels like it’s worth it.