I’m not really sure what I want to write about. This is unusual for me. I usually have at least three or four posts swimming around in my brain at any given time but this time, right now, I’m grasping at straws, trying to come up with a spin that will help me see my way through this mess, this maze I’m in. I’m trying to see some hope or anything that doesn’t look like another dead end, another door that refuses to open. I find myself looking at this life I’m trying so desperately to hold my arms around and wondering how I ever thought I could do any of this.

How did I think this would end any other way?

I’ve been thinking a lot lately about how difficult it is for me to see myself as disabled, as a person with a disability. When I use the word, when I think about navigating life as a disabled person, I tend to go very, very dark. I struggle to see myself as anything but the powerful, strong, independent woman who made a life for herself when everywhere she looked, there was darkness and solitude. I grew a life out of solitude that I truly loved, that I was taught would be sad and empty but was so full it overflowed on the regular. I gloried in the fact that I did everything myself. If I had it, I bought it. If I did it, I made it happen. If there was a problem, I solved it. (I just teetered on the edge of becoming Vanilla Ice…that was truly frightening). Sometimes it was harder than other times to make this happen but I figured it out in the end. I looked at my life after 42 years or so and was amazed at what I’d done. My life didn’t look anything like I thought it would when I saw myself all grown up as a little girl but it looked pretty freaking fantastic just the same and I was proud of myself. Happy. I’d made it – wherever and whatever it was – I made it.

Lately when I look at this life I’m trying so desperately to hold together it looks much less appealing. I realize I’ve spent a good deal of time building something I thought mattered but from this place I find myself in today, it looks a lot less desirable. This life I created for myself assumed one really basic fact: that I would be able. I would be able to do what I needed to do to keep this life on the right path. A path that made me happy, made other people happy, that seemed to be right and good and worthy. I’m not sure if I feel that way anymore. It’s funny when you find yourself at the ripe old age of 52 and you look around yourself and it hits you like a ton of bricks. This life I created that I worked so hard to maintain? It’s a life suited for someone much more able than I am.

Not many people in this life I have know what to do with me now that I’m not THAT girl anymore. I can’t do so many, many things. Basic things. Things I always assumed I would be able to do even as I got older, living alone, being independent as I’ve been for the last 20+ years, taking care of things for other people. Being in charge. Solving problems. Making shit happen. Becoming ever more upwardly mobile…Take my ability out of the equation and much of it just doesn’t work anymore. My life kind of doesn’t need me anymore. I’ve had that fact hit me in the face over and over again in this last year. If I can’t be the me I’d always been, this life I worked so hard to create didn’t really even have a place for me in it anymore. Imagine the irony.

I realized something recently that I’ve had proven to me over and over again as my legs stopped working like legs should. That something is that I tend to walk worse, trip, stutter step and slow down when there are people around to watch me. If I’m hobbling around with my goddamn walker (call it a fancy name, this rollator thing I rely on now for basic forward mobility, it’s still a fucking walker), as soon as I see people in my path, my body starts to act funny. I trip, my feet drag, I find myself moving so slowly as to appear to not be moving at all – all of this gets worse when there are people in my path. When I get to my office and it comes to be time to gather my disability gear to get out of the car and into the world where the “normals” walk around so carefree and obtuse (just like I used to be! God, I remember that feeling!), everything slows down and my body begins functioning even more oddly than it was when I was making my way around my living room where nobody can see me struggle.

I tell myself I don’t give the first shit about what anyone thinks of me – of the way I look, the way I walk, the jerky movements, the slow drag-step thing I do that I still insist on calling walking even when it looks nothing like actual walking. I consciously do not care what it looks like. I consciously don’t care that I am lesser-abled, more gimpy, anything but graceful blah blah blah but my body starts behaving even worse as soon as I see the valet come toward my door to help me out of the car. They do that now when they see me coming. They all jump to be ready to help me get myself out of the car with all of my handi-gear and into the building where I work.

I don’t even pretend not to need their help anymore – I accept the assistance gratefully and thank the Universe that there are mostly good people out there in our world who don’t mind that I walk really, really slowly and I may or may not be clean. But my body? My body stops operating even half as well as it did when I was inside my living room. Or maybe it’s always that bad and it just doesn’t matter to me when nobody can see me crawling up the stairs to pee for the hundredth time in a day on my hands and knees, resting every third step and holding on for dear life.

I just know that my body works less well when I’m out in the world of the able and I think it’s because I’m just so damn uncomfortable with my own otherness. I used to be one of you! I’m not anymore. I used to pretend this was a temporary setback and I’d be back among the able doing my thing to make shit happen. I couldn’t even consider any other option! Now I feel like the world is kind of laughing at me. Laughing at my hubris. My self-assured notion that I could do anything I wanted to do, whenever I wanted to do it.

I have come to realize over the last few years what it feels like to be the other.

My place of relative privilege in the world meant that I hardly ever felt other. Sure, I faced sexism lots of times in my life coming up the corporate ladder in my job in advertising. It wasn’t easy to get where I got in my career as a young woman. It meant I had to be tougher, more resilient, smarter and more stubborn than I ever thought I could be but even facing basic sexism was nothing. I was capable. I assumed I’d always be capable. I never considered being other in any real, meaningful way. I was a member of the favored few who worked really hard for everything I had (probably twice as hard as many men who I reported to over the years – sure). But I made a life that looked enviable to anyone on the outside looking in.

I do not like being other. There. I said it.

I am basically uncomfortable with being disabled. Or a person with a disability. I remember working on an account about 12 years ago where we were helping The Children’s Institute with their branding. The Children’s Institute (TCI) is a rehabilitation hospital, school and adoption agency for children with special needs in Pittsburgh. In the early years working on TCI, we had that language drilled into our heads. We didn’t talk about an autistic kid, we learned to put the child or person first. We spoke of a child with autism. A special needs family was a family with special needs. A special needs child, a child with special needs. Now that the language applies to me, I’m not sure if I care that I’m a disabled person or a person with a disability all I know is I hate everything about it. I’m stuck in an able-ist culture that I’ve created for myself inside my own brain. I don’t hold your disability against you, but I sure hold mine against myself.

For all of these reasons, I’ve been trying really hard to get more comfortable with my new life where I take up a bit more space as a person with a disability.

Acknowledging how uncomfortable I am with the notion of getting through the world in any remotely abnormal way is really hard for me. I have to admit that it makes me feel bad for taking up extra space, needing help, being less than physically able to get through a regular day like I did before. I dislike it. I dislike it a lot. Seeing others master their world, live largely and fully despite disability would help me feel differently, I surmised. I have to teach myself to think differently. I searched for places, people, stories that would help me learn. Not at all surprising really to learn that the world is full of amazing people doing amazing things without the ability the rest of the world tends to take for granted.

This search for comfort about being “other abled” led me to the world of This Little Miggy.

When I get lost in my own sadness and regret it always helps me to look outside of myself – lift up someone else, forget about my stupid situation and remember the world outside. If I can tell a story of hope even if I don’t feel hopeful myself, if I could stop being so fucking self-centered all the damn time, it had to help! I found so many of these stories on Instagram of all places. But they were out there. I just had to look for them.

Miggy is a housewife, artist, mom and writer who does an amazing job of shining a light on what the world is like for the “other” abled, as I’ve come to call us. Miggy has a daughter born with a condition called microgastria and limb reduction complex. What started out as a lifestyle blog has turned into something really special. A place where Miggy educates all of us about what it means to be different. She started a segment on her blog called Special Needs Spotlight where she has interviewed and told the stories of more than 200 individuals dealing with disability.

Now, if you go check out Miggy on her blog or on Insta, you might be surprised to find someone so ridiculously upbeat and full of sunshine because if you know me at all by now, dear readers, you know I’m a bit too dark and twisty inside to allow the shiny happy people to tell me how to look at the world through rose colored glasses. Miggy is so totally upbeat and energetic in her Insta stories sometimes just watching her wears me out, but Miggy got her light through to this prone-to-darkness soul. She just might be magical.

Recently she wrote a book about helping children and parents know how to approach a special needs child out in the world where kids often say the darnedest things when they come face to face with another kid who’s a little different than they are. Her book is called “When Charley Met Emma.”  She also does some amazing Instagram stories where she dances it out (she claims she does this to horrify her father-in-law and that kind of makes me love her even more). Watching Miggy dance can sometimes make me feel better no matter what kind of shit day I’m dealing with out here in the world of Beth. Miggy makes me see the “other” in a whole new way. She doesn’t know it, but she’s helping me get more comfortable with my own disability. She’s teaching me things I didn’t know I needed to be taught.

When you’re stuck in the deep dark maze where every turn is a new obstacle you have to remind yourself to look up. Look up for the love of god! Look up and see that the sky is still there, there are fluffy white clouds floating against an impossibly blue water-color background, there might even be a nice breeze. I am trying to remind myself to keep passing the open windows, to look up, to stop hating myself for being other.

I am the other now. I am the other version of me I never wanted to be. I’m fatter, I’m slower, I’m far less physically able and I cry so much more than I ever thought I could. But I will remember to look up, even when I’m not sure if I can live this refractory life of mine, I will remember to look up. Go read some of Miggy’s writing. Buy her book. Watch her dance. Maybe it will remind you to look up too?

Hell. I don’t know. I’m so bad at this being disabled thing it’s rather hilarious. I can’t decide if I want to fit in or stick out, stay home and hide or attempt to stumble my way out into the world in some new way I haven’t figured out yet.

I don’t know how to do any of this. But I will remember to look up. It might hurt when I do it – but it will be worth it.