Chapter 22 - Relationships

The vast majority of the people I consider close friends live in different cities, states, or countries. Despite that distance, I’ve had a few visits from those friends. When I was fresh out of the hospital, I got a visit from my friends Hana and Carrie, who came from St. Louis and drove me up into the mountains and took me to visit The Stanley Hotel, the inspiration for the hotel from Stephen King’s The Shining. My friend Ati came to visit all the way from Japan. My friend Will came to visit from St. Louis and took me to the show at Red Rocks. My friend Jonel came to hang out, shoot the proverbial shit, and drink scotch with me. My friend Max also came from St. Louis to just hang out and catch up; Our lives have been oddly mirrored, we have both had a parent die, both suffered crazy nearly fatal accidents, etc.

Other friends have periodically checked in and made sure I was doing ok; not in a “we are worried about you” kind of way, but just in a “we care about you” way, very different vibes. I’m definitely objectively bad at keeping in touch with people, regardless of how much I care. That means that I don’t really expect anything different from my friends and it’s fairly standard to go months without talking. Responding to people can seem overwhelming given how physically difficult it can be to respond to even one person, sometimes you just want people to let you know that they are there and that they care, with no pressure of reciprocation. An entirely selfish wish, but many motivations and desires are. Thankfully, I have a number of friends [Erin, Autumn, Jonel, Christine, Ashley, Adam, Ati, KT, Tyler, Jeff, Will, etc.] who have taught me the value of just saying “Hey, no need to respond, just wanted to say I’m thinking about you,” or something along those lines, and now I try to send those messages anytime I have the time and energy. It shouldn’t have taken until my mid-thirties to have learned that little sign of respect. Like with pretty much all knowledge, with each piece I learn, it just reveals how much I don’t know… the more I learn, the dumber I feel.

A special thank you to people like my friend KT who have continued to check in despite a lack of a proper response. She is not much of a text person and prefers phone calls, I am exactly the opposite, so it’s difficult to properly catch up. Nevertheless, she keeps checking in; she leaves a voicemail and I answer by text when I can. I know it probably seems like I don’t care at points but sometimes it’s just difficult to keep up with everything and do everything I want; things in proximity tend to take priority. KT has always been there for me when I needed it. Even when my mom died, KT hosted the get together in St. Louis at her restaurant; she also hosted a goodbye party when I was moving to Japan. People who keep trying despite how difficult you are to interact with are invaluable. You can warn people and they can say they understand, but being an introvert further silenced by paralysis is straining, possibly too straining, on most relationships.  

It wasn’t my first interaction with her but one of my first memories with Autumn was seeing her at the edge of the grass field on the playground at our elementary school and figuring I’d give her a scare by throwing the football near her. I figured, “well, I’m not Joe Montana, so if I throw it at her face, it should go somewhere other than that… right!?” Before I had a chance to think that through, the ball had left my hand and made its way straight to her face; it turns out I might be Joe Montana. I immediately felt terrible about it and wished I wasn’t so stupid, but thinking back, I didn’t really learn my lesson. I hit a number of people in the face with various sports’ balls after that, never on purpose, but definitely a suspicious number of times. I hit one kid twice with a basketball, on separate occasions, after the throws curved unexpectedly.

The scene of the crime…

Back to Autumn; I met her in 3rd grade and her mom used to come in and read stories to us in a beautifully engaging and animated fashion. I have lost touch with everyone from that time aside from her. Thinking back, I didn’t fully appreciate our friendship as we were growing up. We had times when we didn’t interact much, but if one of us needed something the other one would be there to help.

After graduating high school, my appreciation for her and her presence in my life grew exponentially; and as my life went through multiple dramatic shifts as I changed countries, jobs, and lives, she was the one thing that stayed constant. As far back as I can remember, my friend groups would go through periodic wholesale changes, but since we met in 3rd grade, Autumn has been there through it all. I don’t think anyone outside my family knows more about me or my life. There were periods where we were really close, and others when we were more distant, both geographically and in terms of the actual relationship; but there was never a doubt if she cared or would be there.

Autumn came out to visit me a second time, a few months after I got out of the hospital. If I remember correctly [never a given], she was in town while my family was out of town for the first time. There was at least a little part that felt like she was coming to babysit, which she kinda was and I guess I kinda needed. Having your friend act as a caretaker is a difficult transition to deal with, especially if accepting help is already a weakness. That, in combination with my difficulties being around people over long periods meant that I gradually became more and more of an ass hole; probably, but not definitely, in a passive aggressive form. Being passive aggressive mostly comes from my desire to just crawl up into a shell and bask in solitude after all of 5 min of socializing. I try to be social, or at least tolerable, for as long as possible, but sometimes it feels a bit like trying to paint in water color in the rain; a whole lot of concerted effort for a fleeting effect. Basically, I’m an asshole and it takes effort not to be an asshole TO people, which are different concepts, and when I don’t have the energy to put into it, I just shut down. Also, I think the issue gets worse if the other person is high energy; basically, I feel like I can’t match their energy and I feel guilty, awkward, and anxious about it. Autumn is a fairly high energy and social person, which I love about her but I find difficult to match at points. The thing is, it’s not like she is asking me to match her energy or anything, but something inside me insists that it is an absolute requirement; one which I will inevitably fail to meet, of course. I really set myself up for success socially…

Beyond just friendships, there was a noticeable change in the way people interacted with me, most obvious in people who were at some point sexually interested in me. The flirty inflections were gone; it was like they were talking to a child; I could hear how fragile they thought I was. And fair point, I wasn’t exactly superman… well, only in the Christopher Reeve type of way. I was asked out or asked to be in a relationship while in the hospital a few times but everything was so chaotic that I could only think about myself, and it was hard not to feel like it was pity, regardless of if it were true or not. By the time things had settled down and I looked up, I was alone. I don’t blame them, I probably didn’t seem interested; I couldn’t text without help, meaning everything was very matter of fact and run through an autoclave [very clean]. Also, there was the tunnel vision that made thinking of things or people outside of my immediate vicinity exceedingly unlikely, no matter how infatuated I was. I guess I figured that if I asked for time to catch my bearings, and someone was interested enough, they would be there on the other side. Though, I can definitely see how that could be interpreted as a really weak method of rejection.

Even before my accident, I always had weird self-image issues and I basically assumed that no one was interested unless they made it beyond obvious. Things didn’t exactly improve after the accident. As a pretty extreme introvert, I was a lot to deal with over the long-term, and now with the paralysis and everything that comes with it, I realize that I become the limiting factor in a large number of scenarios. It’s not that I think I’m unattractive or worthless - it’s quite the opposite, not to be arrogant. I just realize that the subset of people that would be happy with me in a relationship, has become increasingly small. Obviously, the fact that I simply don’t like the vast majority of people [I wish for the best for people and deeply care about them, I just don’t want to be around them at any point], doesn’t exactly increase my chances of finding someone.  

I’ve tried online dating, but the experience was quickly soured by two women who somehow missed the fact that I’m in a wheelchair; yes, there were pictures, but no, I didn’t talk about the chair directly in my profile. One woman ghosted me after I checked that she knew I was in a wheelchair, but she had just told me she likes ambrosia salad, so, no real loss there.

Conversely, when I first got to Colorado, I met a woman named Amanda through a dating app who I instantly fell for; however, through sheer stupidity I ruined that opportunity after meeting once and most dating since has kinda felt just like going through the motions. Basically, the dating equivalent of chasing the dragon; only, instead of trying harder and harder you become increasingly apathetic… so maybe the exact opposite of chasing the dragon… Even before that, circumstances in my life have had me cross paths with people I completely fall for who actually live an ocean apart. Ok, I’m actually talking about one woman from the UK, who I met at a friend’s wedding in the woods in Japan a decade ago; super normal. They raised the bar so high that being excited about dating, both before and after my accident, has been difficult. I guess it feels a little like if it doesn’t immediately match that feeling, am I actually that interested?   

I have also flirted with people I’ve met or know, but I never want to make anyone uncomfortable so it probably just comes off as a harmless compliment, and to be fair, I also just randomly compliment people in a very similar way, so… yeah, it’s not surprising that it never seemed to have any effect. There have been a number of women from my past that have popped up momentarily to make bold claims for the future or of “taking care of me,” only to predictably disappear; predictable only because of the type of person they are. By that I mean, they are the “you can beat this” kind of person, and when that person comes to the realization that you are not beating paralysis, they disappear. I don’t need a nurse or a miracle cure [uh jk, I’d take a miracle cure]. What I’m actually looking for is a friend and partner.

Tyler, who I had ‘dated’ before my accident and was there all throughout my stay in the ICU, started coming less frequently once I was at Craig, which I mean in no way in a negative fashion; this is in large part because my family was there to take care of things, Craig was quite the drive from Boulder, other visitors  started taking up more of that time and space, and after starting rehab I didn’t have much time or energy left in the day. I think a combination of Autumn, my sister, and my own actions, started making her feel less needed, or maybe even less welcome. By the time I had reoriented myself and caught up to life, she was in a relationship; pretty sure she dodged a bullet there...

There are support groups for people who are dating or are married to people with spinal cord injuries, which is totally understandable, but also indicates the extra burden they feel in the relationship. On one of the groups’ Instagram accounts, you see lots of “I’m proud to be a wife/ girlfriend of a SCI” posts with comments dolling out praise and adulation for them. Let me break down how that comes off to me, but take it with a brick of salt. First, referring to a person as “a SCI” is really reductive, there isn’t even any reference to them being a person, they are just a type of injury. Spinal cord injuries are not sentient. Second, why are you proud to be with them? It seems like it’s because of their injury… if we were to replace the spinal cord injury with some other random characteristic, say, being short, or Black, or Asian, etc. Imagine saying you are proud you are in a relationship with a _____. Finally, would people swoon over those couples if their partner wasn’t paralyzed? Think about how ridiculous it would be to do this for an interracial couple. There is also no room for either of the people [pardon me, the woman and the spinal cord injury] to be anything other than ‘good.’ As I clearly demonstrate, people in wheelchairs can be assholes, too; and the significant others of people in wheelchairs can have shady ulterior motives. That is obviously a small percentage but the assumption that we are all saints seems patronizing, condescending, or just naïve.   

That said, I’m still hopeful and optimistic about meeting someone. A lot of what I said above just feels like realism about my situation. I know the odds are stacked against me in some ways and things will be difficult, but as with anything difficult or uncomfortable, I just keep rolling in hopes of a better day. I’ll continue being my awkward self while working to improve and hopefully someone will find it charming enough to overcome the very visible baggage I roll around on. And to the women I have seen asking how you approach someone in a wheelchair if you are attracted to them… exactly the same as if they weren’t in the chair. In general, I’d say if you like someone, shoot your shot; pretty much any time I see someone I am attracted to, I’d love to say something but always figure it’s best to leave them in peace, and not be “that guy.” I don’t think I know any women who haven’t had even the most mundane tasks made measurably worse because some guy just couldn’t imagine that his attention might not be a long-awaited gift. Vulgarity, persistence, and entitlement seem to be the big red flags. So, to any guys out there reading this, take no for what it is, a hard stop to whatever you are doing, regardless of situation. In the middle of sex and she says she doesn’t want to continue? Your dick should do its best Houdini and disappear. And maybe you aren’t the one out there crossing the line, fine, but you’ve definitely seen it and have an obligation to call it out. Also, keep in mind that a lot of women might be hesitant to directly say no because there are a lot of guys who are super aggressive and fragile, and who will verbally or physically attack the person rejecting them.

Moving on to the topic of sex, I’ll start by saying that sexual function and drive are highly dependent on the person and their particular injury, as with pretty much everything I’m talking about. For me, the information highway going from my brain to my genitals had a few lanes shut down for construction, meaning that no matter what is going on in my brain, it’s not going to cause an erection. However, I still have the ability to get an erection, I just don’t have all that much control of when it happens; it’s always due to some physical stimulus or is drug induced (sildenafil aka Viagra). When it does happen, I can still “feel” what is happening, but it’s definitely different; less specific and more general and tingly. It’s not the full feeling I had before, but I’m happy any of that signal is making it to my brain.

One thing about not being able to control when I get an erection, especially when I was in the hospital or had caretakers doing everything for me – including washing my genitals, is that it typically happens at really inopportune times. Also, I’ve got weird self-image issues when it comes to my dick; I feel like it’s a bit of an inspector gadget/ Mary Poppins situation, where, when flaccid it’s like a hippo penis and just retracts into my body, but when erect is well above average and it’s always a bit like, “fuckin, Marry Poppins over here pulling a floor lamp out of her handbag…” There are obviously a few inaccuracies with this analogy... Being flaccid the majority of the time, it’s super unimpressive and a bit embarrassing, not that getting an erection was any less embarrassing, just for different reasons, but I really don’t have any control over either end of that. You do, generally, get used to exposing yourself to strangers when in the hospital, but they continually push it a bit further, adding more awkward moments; new people, multiple people, long times, teaching your family to do a catheter, having to ask “hey, can you remember to wash my xx” etc.

As I write this, it has been 10+ years without an orgasm, though I haven’t really put in a concerted effort, mostly due to costs. Part of me thinks that I am not bothered because there isn’t much I can do about the situation, another part thinks that the fact that I was a periodic whore [no negative connotation] in my 20’s makes up for it; I had a few serious girlfriends, interspersed with periods of alcohol emboldened promiscuity; mostly fueled by insecurity and my everlasting quest for recognition or validation, even if I had done nothing to earn it.

Fast forwarding to today, I still have the same sex drive I had prior to the accident, but very little of that has to do with me having an orgasm, it’s almost entirely focused on the other person. To be clear, I’m pretty sure that it is still selfish in motivation; how good the other person felt or how many orgasms they had, the better it meant I was doing and the more it spoke to my “prowess or ability.” Given that my dick only responds when it feels like it, I’m not overly concerned with my end of things. If it’s important to the other person, either for sex or reproduction [both are still possible] there are ways of persuading or borderline demanding it to function. There are drugs like Sildenafil (Viagra) and Tadalafil (Cialis) that can help with a bit of a boost in the right direction, but insurance doesn’t necessarily cover those and they are not cheap, 15 doses is about $1,000. Caveat, I realize that women inherently incur higher healthcare costs, especially when it comes to sexual health and wellness, based on insurance companies deeming a wild variety of things unimportant. If a slightly stronger hand is required, no pun intended, there are things like penis pumps and cock rings (I’m sure there are more formal terms but it’s just not worth the google search at this point). And if a virtual donkey kick is required, there are injectable medications, but the injection has to be… direct, and as a person with poor hand function and who is prone to spasms, sticking a needle in my dick does not seem like it would be super appealing. However, people say it definitely works, so who knows, might have to give it a shot…

None of those actually help achieve orgasm necessarily; for that, the go to seems to be a specific medical vibrator that is particularly strong. The big drawback here is that there is no guarantee that it will work, and at $800+, it’s an expensive gamble. Also, having not tried it myself, I have heard from a few people that somewhat ironically, that amount of stimulation basically killed their erections, but if the vibration was maintained, they eventually came to orgasm while flaccid, which is a pretty strange idea. They can also try to have you ejaculate in a medical setting with help from a doctor or nurse, or try extracting it directly; both are pretty expensive [seeing a theme here?] so you have to be pretty committed to the plan.

For me, function is hit or miss; sometimes it doesn’t work when needed and other times it works far too well when definitely not needed or wanted. If I were to tell you it never bothers me, I would be lying to you. I don’t know how to describe the totality of feelings involved in life just telling you, “Guess what!? From now on… No more orgasms for you!” The majority of the time, I don’t even think about it; but there are definitely times when it feels crushing and/ or embarrassing. No matter how much you explain things, a lot of people still take it personally if you lose an erection during foreplay or sex; I get it, but also, I could be thinking about the logistics of single stream recycling and be hard as a rock, but then have the sexiest person I know in front of me naked, and my dick might just sleep through the exam. It causes a fair amount of apprehension in dating. And yeah, I would obviously love it if my dick would just cooperate and function as it used to, but that’s not how the cookie crumbled.

I don’t have any sense of being “less of a man” because I have never really cared about that label, or really understood what it’s supposed to mean. But when you see disappointment on someone’s face because of it, it definitely burns. Whether that be because they wanted to be the one that makes it work consistently again, or because it was something they wanted or needed sexually, disappointing someone in bed feels mildly mortifying, even when it’s not something within your control. In the end, it’s about finding the pickle to your peanut butter; there is a wide range of sexual needs, desires, and absolute no-go’s, including people who can never have an orgasm from penetration, and those who can only orgasm from penetration. On that note, there are strap-ons that basically turn it into an opportunity to use whatever dildo has the ideal size, shape, and suit of functions for them. You can use different sizes or shapes based on positions or use cases; and the adult toy industry is pretty creative, so the world is your oyster… or dildo, whatever. Not that you couldn’t or shouldn’t do that normally, I just think some people have a stigma against using toys during sex; which is a little ridiculous. You certainly don’t have to use them, but to rule them out categorically…

6”, 8”, 9”, 11”, and a spindrift can [not sex related… thus far?]

If you are also wondering if sex with someone who is paralyzed is just them laying there, it can be, but there are different positioning devices and swings that can help change things up. There are very few sexual needs that can’t be satisfied with a little imagination and creativity but to be clear, not everything requires a novel solution; some shit just works as usual.