When I first moved into my current house, about a year or so after my husband died when we were both 30, I found myself in a strange spot. I was living in a new neighborhood full of people who had no idea what my story was, but they seemed to really, really want to know. I’m not sure I blamed them, to be honest, because it all looked pretty glamorous from the outside.

At 32 years old, I was learning how to live independently and in a big old house that I renovated to my specific wishes and was all mine. I was also running around like a fool trying to avoid dealing with the reality of young widowhood by challenging myself to be the most fabulous barfly in the tri-state area. I was out and about, hooking up and being brazen about it, looking fabulous in a newly thinned out body, with my bright white platinum blonde pixie haircut and my stand-by four-inch platform designer shoes. I wore matching underwear every day picked out with great care to match my outfit of the day, because you just never knew what any day would bring. I accessorized my daily costumes with coordinated jewelry and changed my usually ridiculously expensive designer handbag almost daily to match my outfit. I drove a convertible.

For anyone who didn’t know better, I looked to be living my very best single-girl life. I was good at putting on this show. I was running so fast from the reality of starting my life over from scratch in my early thirties that it exhausted the people around me. I went through best friends like fancy thong underwear. Most of them couldn’t keep up. I could barely keep up.

I was to learn later that my neighbors all had their theories about my story. Some assumed I was a lesbian with commitment problems because of the rotation of female temporary roommates in and out of my home. My house was the place to shelter for friends who had left their husbands or live-in boyfriends, moved to town without a place to live or were just in between leases. It could have looked like I was a crazy promiscuous lesbian but alas, I was too busy hooking up with rando hot boy bartenders for that to be the case. Or some thought I was a wild divorcee who had gotten a huge settlement from her rich old man husband and was now living off the fat of his wallet.

Nobody guessed that I was a young widow who was recently been unceremoniously, publicly and brutally dumped by her first big relationship after marriage in a way that almost destroyed me. Nobody guessed that I was blowing through what little savings I had on fancy designer clothing, shoes and bags because I didn’t think I deserved the security that money in the bank would give me. They had no idea I was suddenly so thin because I was taking fist fulls of dangerous diet pills and living on alcohol and happy hour appetizers.

One of my neighbors, in particular, became a bit too obsessed with figuring out my story and made it her practice to visit me on my porch at night when I’d sit on my porch swing, under my giant old maple shade tree in my front yard, drinking expensive Chardonnay, smoking Marlboro Ultra-light menthol cigarettes (a passing phase) whilst waiting for the bar to close and my latest bartender “friend” to pop by for a conjugal visit. She was an awkward girl. She had frizzy reddish hair and wore frumpy shapeless house dress looking sacks with little white Keds sneakers. She wore huge unfashionable glasses with round lenses the color of weak tea. I guessed that she was about my age or maybe a little younger. She lived in the first-floor apartment in the big red house across the street from me.

I’d try my best to send her telepathic messages to stay on her porch as I noticed her sitting on her own steps with what looked like a cup of tea, but I humored myself into believing she was secretly drinking brown liquor out of a floral china teacup. But I knew she’d eventually make her way across the street to chat. This is that kind of neighborhood. I had a feeling she’d have no hesitance in asking me the very questions that other neighbors were too polite to ask. I was ok with their politeness. Telling virtual strangers about my status as young widow and the inevitable hundred questions that would follow about how my husband suddenly died blah blah blah was not at the top of my list of favorite things to do. It usually had the effect of dropping a bomb on the asker and most times resulted in me consoling a crying stranger.

I had already decided to drop my truth bomb on this poor woman.

I told myself it would be for her own good, really. She was clearly romanticizing her idea of my awesome life and I thought it was my duty to let her in on the truth that people are rarely what they seem from across the street. I would help her understand that having visions of a perfect life with a husband and children might seem like the ideal life goal to some, but it was probably important to have a life of your own, too, because sometimes despite your best efforts, shit happens and throws your perfect life plan out the window. Then you might get dumped horribly by a man you thought was saving your life and things would look even worse. Being happy alone was a good first step to being happy in a relationship, I firmly believed from my pompous perch of surviving young widowhood, and I felt lofty in my desire to help her see, to help her really understand, that her vision of my life, of any ideal life really, was fiction. This would be a kindness I would do for this girl who clearly thought her best life was yet to come.

Yep. I was totally full of shit.

I was justifying my desire to drop the bomb on her and make her feel terrible for being such a nosy asshole and making me feel uncomfortable on my own porch. But, hey, at least I can admit that now almost twenty years later? It was after I told her the whole dreadful saga over the course of a few nights on the porch where I told her the entire story in all of its gory detail that I discovered she was in fact drinking herbal tea in that cup but she was also happy to fill it with my pricey Napa chardonnay. She listened to me blather on in rapt attention, almost as if she was planning to write it all down the minute she got home. Around the fifth night of this, she came over bursting at the seams with a question she’d been dying to ask me. I could see it in her face. I braced myself.

“So, people always say it’s better to have loved and lost than to never have loved at all. Do you think that’s true?” she asked with her pale green eyes gleaming behind those giant corrective lenses.

Holy shit. You’ve got to be kidding me!

THIS is what she took from my painstakingly honest nightly story telling? She missed the entire point! It wasn’t supposed to sound romantic or good or any of those things. She was supposed to walk away more confident that her life was fine just as it was and hoping for some chance at a fairytale was probably not the secret to true happiness. But no! She was throwing fortune cookie philosophy at me and asking me to validate it. I never answered that question. To be honest, I spent the rest of that summer and fall avoiding my front porch. She pissed me off. I was angry with her for being so…shallow. I was also ashamed of myself for what I’d done. I wasn’t being friendly; I was being mean. I wanted her to regret invading the sanctity of my front porch at nighttime and I probably succeeded in my goal. She moved out eventually and someone bought that big old red house and knocked the whole house down to plant the world’s gaudiest English garden – but that’s a different story about stupid things rich people do just because they can.

I bring up this seemingly random story to let you know how I felt after finishing Rebekah Taussig’s book, Sitting Pretty. I know. It’s a leap but stay with me, OK?

I, in this case, am the annoyingly naïve neighbor peering into Rebekah’s Instagram posts wanting to ask her if she thinks it’s better to have been in a wheelchair one’s entire life or is it better to have lived a mostly “normal” life for 50 years or so and THEN find oneself rolling around one’s life? Thank Jesus Roosevelt Christ I never got up the nerve to actually ask Rebekah this question. I’ve nearly done it a thousand times! Of her, and of others. I also have the perverse urge to ask people who’ve lived this chronic illness life from a much younger age if they are better off never having known what adult life is without chronic illness or do they feel cheated of all of the things I now sometimes wish I never had the chance to miss?

This book was a revelation to me on so many levels. The pages are dog eared throughout the book where I had my biggest aha moments.

When Rebekah tries to teach a class of 14-year-olds about the medical and social models of disability, I cringe because I’m 53 but I’m also one of those 14-year-olds but I have half a damn century of living as a “normal” to cement my most ableist internal beliefs. When Rebekah talks about trying to avoid people seeing her transfer to and from her chair because it makes them so uncomfortable and doesn’t help her feel any more included than just sitting in the chair does. I do this! It’s why I beg people not to show up for a visit to my house early. I never want anyone to see what happens to my body when there is another human present when I attempt to do something so normal (for me anyway) as hoisting myself from my chair, using my walker to get to the wheelchair to then get myself on the stairlift to begin my ridiculous journey toward taking a pee. I much prefer to just sit as normally as possible in a chair so nobody, including me, has to experience what a hot mess I look like getting from point A to point B.

The chapter, “Feminist Pool Party” blew my mind almost every other page. Rebekah shares a story about attending discussion with a bunch of young women who had achieved a certain level of success in their fields and how they responded to a question about achieving work-life balance.  None of the panelists had much to say because most of them saw their work as their life. In Rebekah’s gorgeous words:

“I sat in the audience stunned that these were the only responses provided. Really? Is that it? Let’s all just giggle about the impossibility of having both a career and a body with limits? Nearly two years later, I still think about that conversation. Each woman on that panel presented themselves as living in bodies with endless resources, and they were there to model success from that position. How many women listening had bodies that could replicate that model? How many can sustain that approach for another ten years?” – from Sitting Pretty, The View From My Ordinary Resilient Disabled Body by Rebekah Taussig

There are so many sentences in this book that blew my mind, it would be illegal for me to share them all. Just go buy the book. Pay special attention to pages 161-163 where Taussig writes about our tendency as human beings to hold independence up as the best way to live life…her ideas about the beauty of dependence and experiencing (mutual) dependence with her partner Micah brought me to tears. I never allow myself the luxury of seeing dependence as anything but failure. Never. It felt like reading another language that suddenly made sense to me after taking no language courses at all and trying so very hard to allow myself the help I so often require without being able to read the damn manual.

The most important thing this beautiful book left me with is the there is no right way to be disabled. No expert training on how to make it easier, no spirit guide, no instruction booklet. I struggle with this most of all. I just want someone to tell me how to do this already! Why can’t I be better at being in this disabled body? Why do I suck at life now? When will this constantly devolving situation ever get easier?

No. Rebekah doesn’t provide those answers I so desperately need. But she helped me learn that those answers are mine and mine alone. I will discover their answers as they reveal themselves to me. Not a minute sooner. But damn. It’s such a wonder to have this amazing voice, this gorgeous storyteller to help me feel so much less crazy.

Read this book. You won’t regret it. I plan to read it again and again until I learn how to give myself the grace I so desperately need as I learn to navigate life in this disabled body in an ableist world built for anyone but me. Or you. Or us.