An excerpt from A Life Derailed: My Journey with ALS:
I’ve met a few women in the last couple of months. For a very long time, a friend has been trying to get me to “put myself out there.” I dismissed the idea as absurd. What woman could possibly want me? The last one walked out on me, and that was before I was using a chair, gave up my car, and moved in with my parents. How will I even begin to describe my circumstances? “And, by the way, I have a terminal disease; you’ll have to pick me up and sign the check.” Insane.
Nevertheless, she convinced me to try. As we discussed, “put yourself out there,” means Tinder. One afternoon, I created an account, posted a few pictures, and scribbled a quick bio. How much should I say? What should I show them? I can’t tell them everything; no one would ever respond if they knew the full truth.
I’ve switched up my profile a number of times. It said “ALS” and “wheelchair” in a couple of versions. I even posted a photo in my 370-pound monster for a while. But I decided that was too much. Maybe I should ease them in slowly.
It’s awkward to ask a date to pick you up at your house. More so when your mother answers the door, chats with your date, and shows her how to secure your wheelchair to the floor of your van. I’m equal parts compliments and apologies from the beginning.
If, at the very least, I text with and meet some interesting people, so be it. It goes against my instincts, but I’m trying to stay positive and not look too far ahead. I’m trying to embrace the idea that possibilities might just exist.
So, you’re dying to know, how’s it going? About as you might expect: mostly frustrating, spotted with periods of hope, some lasting longer than others. But I’m certainly not alone in that assessment, however unique my situation.
A man in his late thirties is looking to date in Hinesburg, Vermont; how do you think that would go? Might be difficult, right? Fortunately, he is looking for a woman; if he were gay his search would be exponentially more difficult.
Thirty-eight years old is not the ideal age for online dating, at least not in this area. Granted, it’s much easier when you’re not looking for “the one,” but just someone (more on that later). But after all sorts of swiping, I’m sure I’m about ten years too old.
And don’t think I haven’t considered it: if I were in my late twenties, healthy and fit, I feel like I’d do very well. Of course, I can’t combine the inexplicable confidence I’ve gained over the years with that younger version of myself, never quite sure about anything. Not that I’m good at this, but I’m much better than I was before all this shit started.
Admittedly, it’s much easier via text (though that’s not universal, I’m sure), but I’ve learned how to communicate what’s in my head. And that makes all the difference. Compliments: think them, say them. Conversation is easy. Actually, let me pause there: conversation isn’t always easy; sometimes it’s utterly impossible.
I enjoy conversation, that is, actual back-and-forth on meaningful topics. I enjoy the meandering nature of a conversation in which either party can move things along smoothly. As I recently heard it put, I’m a butterfly, not a jack hammer. I like to move from topic to topic (in life as well as conversation) rather than continuing to drill in on the same things. But some are unable or uninterested in discussing anything beyond what they had for dinner.
I thought, going in to this, that if I was able to open up, to be honest and vulnerable, that the woman would see that and instinctively try to match my candor. How incredibly naïve. I was very quickly made to understand that it didn’t matter what I did, the vast majority were never going to offer anything beyond superficialities. I thought the cliché is that men are closed off, but so many of these women seemed just terrified. Of being judged, criticized, and hurt, I suppose; shielding themselves from the assholes of the world. But I wasn’t one of those, only how did they know? It just seemed so childish, such a waste to give such power to those fears.
Sadly, as I describe in great detail in my memoir, I used to be one of those people. Always protecting myself and completely closed off. Unable to utter the slightest compliment for fear of ridicule or rejection. Dear women of Tinder: When I tell you you’re cute or sexy or beautiful, you can tell me I’m handsome; you already gave your approval by swiping! Please don’t just say “thanks” like you wish I’d go away.
One of the most popular words on people’s (I can really only speak for women’s; I haven’t seen many men’s) profiles is connection. Everyone is looking for connection. It’s another way of saying they want to feel something; not meaningless sex, but also without the pressure of finding “the one.” It’s a healthy and logical dating goal, I think. But you have to be willing to try.
“Connection,” in Brené Brown’s Atlas of the Heart (you’re not going to find a better definition of an emotion) is defined as “the energy that exists between people when they feel seen, heard, and valued, when they can give and receive without judgement, and when they derive sustenance and strength from the relationship.” Clearly, this is a safe feeling and place, but you can’t get there without taking that vulnerable first step. “Putting yourself out there” in a real way. Maybe I’m simply expecting too much too soon.
I’ve tried to keep an open mind in my choices. In fact, really open. I try to say to myself, “I don’t know her” before allowing a knee-jerk reaction. I’ve swiped right, i.e. said “Yes,” to a whole lot of women I’m unlikely to be interested in or attracted to. Not everyone. I thought about simply swiping right on everyone, because I’m trying to have a “Why not?” mantra, but there are a lot of pictures and profiles I just can’t wrap my head around. I’m actually not sure which one is more telling: unattractive pictures or unattractive profile. As I said, I really try to be more than charitable in my judgments.
But you can’t entirely fake attraction. Or at least I can’t, or don’t want to. And don’t think it’s all about looks; it’s about the whole package, finding the whole person attractive (enough, in some way.)
I realize that isn’t the most romantic of outlooks, but I’m not operating based the “rom-com” playbook. That is, I’m not looking for “the one.” Primarily because that’s not realistic; I can’t expect a woman to chain herself to a sinking ship. I just want someone to spend time with―including, but not limited to, romantic time―talk with, and think about. That makes it much easier (theoretically). Low expectations, low pressure, live in the now and operate on a simple principle: do I like her; do I want to spend time with her?
Of course, this is all on my end of the scale; in practice, none of these things bear much weight. Someone has to pick me as well. (Yet another frustration, if I may, is getting a glimpse of all sorts of women I’ll never see again. The twenty-something wannabe Instagram model with an incredible body, sure, but even more so the beautiful doctor or lawyer or anyone that would seem also to be intellectually stimulating. It’s almost painful not to be able to talk to these people, but I guess it’s not much different out in the world.) I said in my book that I’d changed up my pictures and profile a number of times; a year later, that number has grown―a lot. I’ve waffled between my two options: communicate very little at the outset, or show all my cards. Here’s my last two profiles, one of each:
I'm a kindhearted, easygoing, academic-minded, loves-to-laugh goofball who recently published a very well-received memoir. If you choose to be in my life (and let me into yours), I will treat you with respect, first and foremost. I'm not afraid of my feelings and am more than willing to talk about anything. I'm not looking for a serious relationship but would like to make genuine connections, emotionally, mentally, and physically. I want to flatter you and make you feel good, if you'll let me.
Here goes nothing...
I have ALS.
I use a wheelchair.
I live with my parents.
And still, I'm the best person you're going to meet on here.
Don't believe me? Give me a chance and I'll show you.
Pretty audacious with that second (and current) one, I know. Maybe a little too real with both of them! It’s hard to know which of the dozen profiles I’ve written is best because everyone’s different, and really, it’s hard to know if my words matter much at all. Maybe instead I should work on my pictures.
I think the unknowing public would be surprised at how often the match (both parties independently saying “Yes” to the other), is not the beginning, but the end of the road. What at first might seem like an exciting occurrence, slowly fades away when your carefully chosen message goes unanswered. If your matches are merely a sliver of the pie, those you will actually talk with are yet another small fraction. I’m actually more surprised when I get a response, especially a timely one.
Allow me an aside on things I’ve seen in Tinder profiles. ENM is far more common than I would have thought. Or maybe they’re just all on Tinder, seeing as how they want multiple partners. Oh yeah, that’s ethically non-monogamous, which I guess is different from polyamorous, though I don’t know how and I’m not going to Google it. Sapiosexual is one word I did Google; it means attracted to intelligence. There are all sorts of others, of course, which gets me to my next point.
There are all sorts of people on Tinder. I’ve matched with some women who have put down those they’ve seen, like, “there are so many weirdos on here.” (One actually used the term “weirdos,” which I associate with my mother, a Boomer.) I’m not going to pretend that I’m attracted to or wish to know everyone on Tinder, but I’m not the arbiter of “weird,” and neither are you. To be offended that someone exists―and is a human being, worthy of love, just like you―is ridiculous. I actually think scrolling through Tinder is a good exercise that gets users out of their bubbles and puts a certain cross-section of humanity in view.
Users indicate their intentions with pictures (suggestive or conservative), the “Relationship Goals” tool Tinder provides (short-term fun, friends, long-term partner, etc.), and in their profile (with words!). Sometimes intentions are, in fact, outside the box and less than purely Tinder-related. A profile can (seemingly) double as an advertisement: they are trying to accumulate Instagram followers, are phony accounts trying to scam you in some way (like the rest of the internet), or, as in a match I had the other day, they are technology enabled quasi-prostitutes on OnlyFans. (I probably shouldn’t use the term “prostitutes” as there isn’t any actual in-person interactions, from what I understand. It seems more like personalized pornography for a fee.) If you’re wondering if I signed up for that last one, I did not. The exchange of money kind of ruins it for me; I don’t want someone who doesn’t want me. I did however send a quick message to confirm her intentions. She is still a person!
A few other things I’ve seen in profiles (and stopped to write down, when I finally stopped laughing) are as follows:
"If your here too waist my time Please Don't!!!"
"Looking to get bent over and banged like a screen door in a hurricane."
"The difference between me and a mosquito is I don't stop sucking when you slap me."
"The ideal male body type is Danny DeVito."
I apologize if those are a bit graphic, but I can’t help myself. And that last one! The wit! I wish I had matched with the mind that wrote that. In reality, those are four of the most outlandish lines I’ve seen in hundreds if not a thousand profiles; they’re really not a proper representation of the Tinderverse.
I’ve also been surprised at the adherence to gender roles on Tinder. I don’t mean to say that the men are all lumberjacks and the women princesses―I’ve probably seen every possible “type” of woman there is, and I hope each feels free to be themselves―but rather, the man is expected to make the first move. That’s been slightly disappointing; I’d really like to be chased and complimented. And I’ve read your profiles; stop blaming shyness, it’s texting! I think you just want the validation. (But once in a while, I would like some validation! Would a “Hey handsome!” really kill you, ladies?)
Back to our math. Of the tiny percentage who both matched and responded to your message, yet another large portion will, for whatever reason, soon lose interest and disappear. Of those who stay long enough for some actual back-and-forth (during which I may or may not have to break the news that not only do I have a terminal disease that has forced me back under the same roof as my parents (!!!), but that I live on a dirt road in Hinesburg and don’t drive), fewer will exchange phone numbers, fewer yet will make plans to get together, and even fewer times will those plans be kept.
Sounds like a drag. How can anyone be left?! Somehow, sometimes it works out and I have the privilege of meeting someone in person. (I know that sounds tongue-in-cheek, but I think, for me, it is a privilege.)
Just how many times has this miracle occurred? A few in the first few months (I actually had TWO dates with the first woman I met!), and only a few since. You may be wondering what I like to do on these dates; I know because you’ve asked me. Normal stuff; talk over coffee or tea, have lunch, have dinner. I brought (I directed; they brought) a couple of dates for an afternoon at Mount Philo, picking up sandwiches on the way. (It’s a small mountain―or large hill―with hiking trails and a paved road to the top. I’ve discovered my chair has plenty of battery to get to the top.) Those were my favorites, closest to the adventures―“Let’s go hiking and stop for beers afterwards!”―requested in so many profiles. One woman invited me to hang out at her apartment, a ground floor studio with workable wheelchair access. (It could have been shockingly ideal, but I’m not sure there was a mutual attraction and I haven’t spoken with her since.) I haven’t been out drinking with a woman, and I’m not sure how much I’d want to. But for the most part, the activities are not a major stressor. As you might expect, those who agree to meet up are a consistently kindhearted bunch.
I have taken a lot of breaks from swiping for multiple reasons. Because I was feeling discouraged; because I felt like I’d made my way through just about every person in a 50-mile radius (which is already realistically much too far); and because I met someone who was helping to occupy my lonely evenings. What’s that you say?!!
Indeed. I met someone and we talked every night for several months. We still exchange messages almost daily; hopefully that will continue. I regret to inform you that we only met the one time, though we did have some fun, to use the most G-rated euphemism there is. That has been disappointing, but I try to appreciate the conversations and relationship I’ve gained rather than mourn the loss of imaginary fantasies in my mind.
And there have been a couple others who have been meaningful, and a new lady I’m excited to meet soon. I’ve learned that maybe the most attractive quality―perhaps due to its rarity―is a woman’s willingness to let me in. To not only say, “Ask me anything,” but to voluntarily share her vulnerabilities. It feels good to both be trusted and hold onto that trust.
So please don’t take this as a disparaging account of online dating; it’s not meant to be that at all. I actually think it’s probably the best way for people to meet, at least outside of the usual social circles. And of course, I’m not a 22-year-old hottie in a bikini (someone for which seemingly everyone will swipe right, if only because they can’t bring themselves not to), I can only speak from my experience.
Oh yeah, and if you prove yourself to be trustworthy, and ask, some women will send scandalous photos. I can’t go into detail; my mom reads this!