I want to write something beautiful about life, disability, my wheelchair, how watching television and being on the internet seeing people talk about the end of pandemic life makes me feel a certain kind of way and how nothing on television relates to my life anymore but writing itself has become hard for me because my fingers start out feeling almost normal but before something beautiful can come out of them they go all tingly and annoying so I’m forced to resort to phone writing which doesn’t really feel like writing at all.

I want to write something beautiful about how straight up crazy I am, always was probably, but currently feel like I’m living on the edge of insanity where things don’t make sense but sunny days somehow make me happy now whereas in before times they made me feel oppressed by their insistence on my optimism.

My house is full of big, bright windows now that allow me to see the outside without any effort at all and that somehow changed my DNA to make the sun my friend again. Rainy days are still ok by me but they don’t feel as peaceful as they used to when my relatively healthy body allowed me to loll about in my big puffy bed covered in cats, lots of cats all in shades of black and white but in totally different shapes and sizes, who all took their places on top of me, beside me, adjacent to me while I listened to the rain fall outside of my 150 year old former home’s tiny windows, without any worry about how I’d feed them or take care of so many cats because I just did it. I no longer have even one cat, not black nor white nor both – nor is my bed big and puffy anymore.

Truth be told I don’t actually have a bed right now because my fancy Sleep Number bed with the adjustable base became a thing I hated and I banished it to a guest room because those fuckers wouldn’t let me return it. Maybe it was because I fell late at night that one time right next to that bed and every time I looked at it after that it gave me a feeling of strange unwelcome funky mojo.

Or maybe it was because I hated all of those gizmos and apps and just wanted a bed close enough to the floor that I could get in and out of it without needing to use seventeen handi-tools. I have a new bed on the way. It will have a low profile box spring and even after adding a new regular old mattress that requires no apps to control it won’t be puffy at all. It will be modest and low. I’ve never slept in a modest, low bed. It feels like the end of yet another era. Truth be told, I just hope I’m able to get in and out of it and maybe also like laying in it a little bit? Bed shouldn’t be complicated.

I am no longer the girl in the puffy bed. I am no longer the crazy cat lady. I’m no longer the mysterious neighbor lady with friends and boys coming and going at all hours. I’m also no longer the sad crippled woman sitting in the inaccessible doorway in her wheelchair looking at the kids running back and forth on the sun dappled sidewalk under the giant ageless maple tree, wishing she could be outside on the porch at least feeling the empty space around her instead of the walls of the house pushing at her from every treacherous angle. I am no longer the woman without a real job on medical leave that seemed to go on and on into a time frame that eventually lost meaning. That was my life. It wasn’t real but it was mine.

I am also no longer the girl who drives the convertible on sunny days because I can’t drive with my feet anymore and I haven’t yet learned how to drive without my feet. I’m dying to make that happen – to take the lessons, buy the car, find that perfect used Thunderbird convertible I have driving around in my brain but at the same time taking on even one more new thing right now feels as impossible as the real end of winter or getting up and taking a simple little walk across the room.

I want to write something beautiful about being not one thing but not quite another. How people do indeed have limits, as it turns out, on how much stress from the events of life they can bear all at the same time without losing it a little. Long hospital stays. New house. New job. Pandemic isolation from my family and most of my friends. Unplanned illness among those you love. Beloved pets that are just gone. Instagram posts about people walking with rollators and crutches haunt your nights but also somehow keep you going. Everything in life being halfway done – not quite finished, only almost.

Like me. I feel halfway done, not quite finished. Unformed.

I get up every day and fake it (like we all do, likely) just to convince myself (and maybe you) that I am JUST FINE. I have so many things to be grateful for. I am a thousand times safer in this new home than I ever was before, back when this whole dark and twisty road took its rando turn into a world I never wanted to be part of. I am full of light and space and have the wheels to make up for the legs that just won’t. I should be JUST FINE. I can’t stop writing about how grateful I am and it feels fake, like I’m so afraid you might judge me for being so afraid when I shouldn’t be, so maybe if I say how grateful I am a thousand times you won’t feel the need to point it out to me.

Some transitions happen so fast you look around you one day and realize that nothing is the same. Other transitions take so long and are so never ending that you sit up at night wondering if you have the years left in your broken body to see how this crazy movie ends. I mean, you kind of have to because that’s what life is…a never ending transition without instructions or even reliable guideposts. And while you’re experiencing all of that, you have to get up every day and get dressed (sort of) and join a million video calls because that’s what people do now (and also because if you didn’t have that distraction the mind reels at how off the rails one could suddenly find ones self). But there is sunshine outside the giant windows. And breezes that come through windows that are suddenly OK to open.

I want to write something beautiful about acceptance and how sometimes, late at night I wake up to pee and it’s quiet and dark and I am alone and I wheel around the house from room to room in a giant loop because I can. I’m not afraid to be alone in this new place.I think I’m actually longing for it and working so very hard to try and make myself well enough for this aloneness that I crave to work for years and years to come. That’s what I want more than anything else.

My next door neighbor stopped by yesterday. Adam and his wife Jill and me share a wall. Our houses are identical. Now that the weather is nice, Adam popped by to ask me about my contractor because he wanted some work done and my guy is amazing. We chatted about the changes I’m making to the house to make it even more accessible.

“Jill and I are doing the same in our own way. I’m legally blind and partially deaf. The world out there isn’t quite built for me. We’re trying to create an oasis where we can just be. That probably sounds weird.”

No it actually sounds familiar. Odd how we ended up sharing a wall.

Outside is ever more outside the realm of my abilities. Sure I have the chair and it is a lifesaver. I couldn’t exist without it. And yet in the outside world, most places in this old city are still not accessible to me and my chair. I can’t get inside of any of my family’s homes. They all have steps. Sidewalks and curb cuts are dicey. Don’t get me started on the availability of accessible bathrooms.

Every time I go out into the world, it hits me how unsuitable it is for me. I don’t fit there and I don’t find it pleasant. It’s not fun for fun to be a struggle. It’s not enjoyable to me to stress about what I can and can’t access in the outside world. So I’m choosing to build an inside world (with outside access) that suits my particular needs. I’m choosing to see my home as my sanctuary where the things I need are where I need them and where I don’t struggle to fit spaces not built for me. This might be the best idea I’ve ever had or maybe the worst. It can get lonely sometimes, during a pandemic, to just have me and this place. But it also feels exactly right for where I am in this life. Living through perhaps my fourth mid-life crisis, trying to figure out who I am and what I like and what makes me happy – what might lead me to that ever elusive thing people call joy.

Everything is in flux and my anxiety is through the roof.

I wanted to write something beautiful but instead I wrote this because I had to. It’s what came out when I sat down at the keyboard. It’s what’s coming out of my thumbs now that my hands have gone numb. It’s not very beautiful. It might be a little dramatic and a twinge tragic and a lot all over the place.

That’s just where I am. I wonder how long I’ll be here? I wonder what comes next.