I wanted to show people I was still me but also show myself I was still me
|Jan 9||Public post|| 9||1|
I don’t know if I’m supposed to start this one with the falling off the roof or the feeling trapped inside of the magnetic coffin. One is my story and one is someone else’s and one certainly has a more drastic denouement but comparing them isn’t the point. It is but it isn’t.
I came across Dain Dillingham a fine writer and an even finer young man the other day when I was crying on Twitter like I often do about my injuries. I had been inside the MRI machine that day and it is so bad I can’t explain how bad it is to be in there for me. Some people say it is soothing and they fall asleep in there but some people are fucking psychopaths so who’s to say what’s right. For me it doesn’t get much worse at least it hasn’t yet. You’re shoved into the space oven and you cannot move and the ceiling is on your face and the walls are pushing in against your arms and then you listen to the worst ambient drum and bass concert you’ve ever been to for a half hour. And this is best case scenario. Do you know how hard it is to even get the insurance company to let them turn the MRI on for you they’re like your dad with the heat when you were growing up. Turn that down we’re not made of money. They are though. Not your dad the insurance companies. Maybe your dad is too in which case may I have some of the money?
Dain replied to my tweet as other people did with stories of being in the MRI and his was obviously let’s say more notable than mine to be fair because everyone has their things right.
luke o'neil@lukeoneil47Getting an MRI today I fucking love it! I love thinking about being in the space coffin listening to discarded Death Grips beats for 30 minutes silently and still.
Dain and I chatted and he seemed funny so I went to read some of his stories he posted to Medium and the weirdest thing I’ve ever done in my life happened next I found myself reading someone else’s stories on Medium. Here’s one I liked.
“Often when I meet new people and tell them the story of how I got here, after the condolences and ‘I’m so sorry’s’ the question that usually comes is ‘will you walk again?’” he wrote. “And I think I understand why that is. Most people view walking as the most important thing. The thing you think ‘I couldn’t live without.’”
People want Dain to get better sometimes he thinks because they want to know that they might be able to get better someday were it to happen to them which of course it won’t but just in case right. It’s like how when someone dies you ask how they died and the person tells you and you go oh ok that could never happen to me I’m not going to die from that I’m good for now.
“So I understand now that people want to know if I’ll walk again in hopes of reminding, or perhaps assuring themselves, that broken things can be fixed again.” he wrote.
I talked to Dain on the phone from Seattle where he lives now about the injury he suffered and how he’s made his way back to writing and I don’t want to say it was inspiring because he doesn’t always like that sort of framing of people with disabilities but I will say I really genuinely enjoyed our conversation and I’m not sure I can remember the last time that happened to me. Hopefully this will be the last time on Hell World I enjoy talking to someone because I don’t want to lose my edge.
You tweeted at me the other day and we chatted a little bit in the DMs and then I went to your Medium and read some of your stuff and I really liked it. I started to think like I told you how I’m always whining about my injuries and here’s a guy who has gone through something a lot more serious and I felt like I should shut the fuck up.
The one thing I try to tell people usually off the bat is, well, ok, first off, here’s what I went through: Five and half years ago in the summer of 2013 I had an accidental fall. I was celebrating my birthday with some friends. We were on an apartment rooftop hanging out late at night. I took a step backwards not realizing where I was at and I fell about ten feet straight onto my neck. I shattered my c5 vertebrae and I was paralyzed from the neck down immediately. My brother and friends were able to call 911 and I was real close to one of the best spinal cord hospitals here in Seattle. I was really fortunate to get there within minutes and I was in surgery by the next morning. It was my 28th birthday. Needless to say it was a big change hearing the doctors say you’re paralyzed from the chest down. Back then I wasn’t even strong enough to lift my arms.
Usually what I tell people is that my experience is toward the extreme end of trauma and health in general but when I write about myself I don’t ever want anybody else to feel like what they’re going through is minimized because of mine. We all have our hurdles. You could look at yourself and be like I can still walk I just have a bad back but a bad back can still be a huge hurtle for a lot of things.
Man did you always have such a generous spirit? Were you always like this or were you an asshole when you were younger be honest?
Haha, no I think I was pretty generous. I was talking to some friends about this the other day, some other people from the Midwest. I don’t know if some of it comes from a type of Midwest stoicism approach to life. You just grow up taking things as they come and have a keep-plugging-away mentality. I credit a lot to growing up with my mom, a single mom who raised my brother and I. My dad was in and out of our life, and he passed away pretty young from cancer. He had struggled with drugs on and off. I think him dying young actually was my first kind of trauma. Dealing with that and having a mom who was always honest with me about his struggles we would have open conversations around mental health. She’s had depression in her family, we’ve had drug addiction and alcoholism in our family. She was somebody that was always like very honest about the hard and tough things of life but was also this person that was like life can still be good. Not to be too cliché but life can still be beautiful. Nobody wants to have to learn from the hard shit but it’s just part of it. The thing in our family is it just is what it is and you kind of keep moving.
What did your mom do?
My mom spent almost thirty years of her life counseling sexual assault survivors. Her work in general revolved around a lot of trauma and processing that. I think growing up being around that and knowing what her work was and seeing her doing that helped. She did a lot implementing education in our schools for sexual harassment. I think I just grew up around trauma. I have thought at times that this happening to me, in a lot of ways, I think I was prepared for it, however unknowingly. I was maybe braced against it better than some other people would be.
You were an athlete and getting used to not having access to that part of yourself anymore was particularly difficult of course.
It was hard. I was an all-state athlete in high school in Kansas and I played basketball in college. Before my injury I was working as a winemaker. My older brother was working out here in the wine industry and got me a job in it. I was somebody who used my body every day so to suddenly have that kind of taken away from me was hard for a lot of reasons. Obviously the sheer physicality of it. Also your identity gets wrapped up in a lot of those things. You try to figure out who you are after a lot of this other stuff gets taken away.
What happened to your back?
I think just years of lifting weights weird caught up with but whatever I feel guilty even bringing that up.
Nah. Something I deal with too has just been that loss of independence and doing the things you used to do without even thinking about them. Whether it was getting in a car and going on a road trip, now you’re like I can’t do that or it takes a lot of planning. Asking for help. I had to become somebody like that. Maybe it’s going to the grocery store and needing something off the top shelf or getting dressed. If you’re just stuck home with a bad back and you gotta ask somebody to get groceries for you or something that kind of thing can be real hard. And there’s definitely an element of masculinity around it, that a man should be able to do things for himself. You start feeling like Who am I? What am I?
You have use of both your arms again now?
My diagnoses is incomplete quadriplegic. Usually that just means you have some kind of feeling below your level of injury. I have some feeling. It’s not the kind of feeling a regular person has. I don’t feel temperature. Hot and cold I don’t feel below my nipples basically. That was a problem once. I burned myself real bad with a heating pad. I have this huge scar across my stomach. Things like that were hard to get used to. You have to listen to your body in different way. I don’t have the same signals as I used to. I can use my arms basically but my triceps don’t really work. I can lift my arms and do stuff like that but when your triceps don’t work they don’t extend the same way. My left hand doesn’t move much. My right hand I’ve regained some strength.
And that’s how you write?
I type everything on my phone with my right thumb. I’ve regained the ability to write with pen and paper also which was nice it was something I missed. I tried voice programs but they’re just kind of weird. It’s weird, you know how it is, just one of those writing process things. Everyone has their own way. The talking I just couldn’t really get the same rhythm to it. But that was huge for me to be able to get that because those first two weeks especially I literally couldn’t even lift my arm. People were feeding me. My brother would check my phone for me. When I finally got the ability to be able to lift my arm and kind of aim my thumb toward the phone to tap a few things out… I remember the first Facebook post I wrote. It was maybe 250 words or something and it must’ve taken me almost an hour to type it, but it was huge for me to be able to do that. Ok. You can communicate again.
I was fortunate to not have any head trauma or brain injury. If you lose your body you’re at least still able to retain who you are so to speak. I was still able to be me. I could still have my sense of humor and ability to reflect on everything.
Being able to get back on Twitter …is that a blessing or curse?
I know right! It’s so crazy. I thought about this a lot though. In this day and age having access to social media and being disabled — and I think other people too, not just disabled — having the ability to reach out and be a part of the community is good. I think about people injured 25-30 years and the level of isolation they must have felt.
One thing that happened is almost 100% of my friends’ houses became inaccessible to me. They live in old houses without elevators or they have too many steps. So how do you continue seeing your friends? Maybe you’re not working, so how do you be social? I was a sociable guy and I am still. I love being in crowds and hanging out. That went down drastically and you really feel the effects of isolation. Being able to get on Facebook or Twitter and connect with disabled communities on Facebook helped.
Also just checking in with your friends helps. Social media can be double-edged because on the flip side you see a lot of your friends doing things you used to do or making strides in their career or family life that I feel way behind on because of this injury. I think people feel that anyway and social media can give those feelings no matter what the fuck you’re going through. But being able to have that and saying I couldn’t leave the house today it was nice to be able to talk to some people and interact…
Darren Rovell@darrenrovellShow your kids this picture. Ask them what type of life they think this man lived. Then tell them he couldn't write, but wrote a New York Times best seller. That he couldn't talk, but his voice was powerful. That he refused to let his limitations limit him. RIP, Stephen. https://t.co/Isf7yA2fek
I really liked the things of yours I read. Is writing something you’ve always been doing throughout your life?
Thank you. I definitely wrote before, but it wasn’t something I took as seriously. I always had a notebook full of poems growing up that I would write in. I’m of the generation were we had Instant Messenger and Facebook came out my freshman year of college, and I was always the guy that had funny posts and would write a little more. Then after my injury I wrote something that kind of went semi-viral and all of a sudden I had like 5000 people following me on Facebook and it was cool because when I try to think of positives with the injury I do think it gave me a chance to have a bigger platform to reach people with a message of positivity. I say honesty I guess, not necessarily positivity. I try to be positive but honest more than anything talking about the hard days and the good stuff.
Writing was something to help me process all the shit I was going through. I’ve always been pretty introspective, especially after my dad passed away. I turned inwards with a lot of the processing I was doing. I was still outgoing and popular but some of that harder stuff I think I kept on the inside for years and years. I think going through this injury and this life change I was like I needed to write because I don’t know how else to work through some of that grief and trauma.
I read something you wrote about looking into your family’s history and being descended from slaves and one of them being lynched for something he probably didn’t do? Is that something you knew about growing up?
We’ve always known that. My dad was black, my mom is white. Dad is a Dillingham. So we knew that side. Speaking of Facebook, when it first came out I remember you could search people’s name. I was like lemme put in Dillingham. I remember connecting with a lot of white Dillinghams. I connected with one and she said her mom is a big genealogy person and she tracked Dillinghams that came over from England, some of the first colonists over here in the 1600s. The family split and one group went to the south one went to the northeast. Long story short, we’re descended from them.
My friend wrote this book, The Man From the Train, and it ended up having the lynching of a Dillingham from an area I know my family was in. I was like holy shit. Unfortunately my dad was not very close with his side of the family so there’s a lot I don’t know about that side of the family and it’s something I’d like to learn more on.
In one of your pieces you talk about feeling a sort of pressure from people to improve for their sake? As if they need to see you walk again to soothe their own fears?
People want to see me get better to restore their own hope. Yeah I do feel that. The one thing I get a lot is people being like, God has a plan for you, that whole thing. We did not grow up very religious. I’m not very religious but I believe in a higher power. I’ve got some God faith in me. But it’s really hard to hear that from people when they’re kind of like God is teaching you a lesson. I like to think God didn’t need to break my neck just to teach me about being a humble person.
I have felt that from people in the past, people who want to see me walk again, or see me get better. I was fortunate to receive these kind of compliments, they were like You’re the last person this should have happened to. You don’t deserve this. So I think my injury shook a lot of people’s faith in a lot of ways. It brought up a lot of questions about why do these things happen to people. I think people want to see, not necessarily a miracle, but they do want to see me walk again because it can restore something they might have lost or answer a question they might have had. I do feel that pressure a little bit. I feel it for myself. There’s some days where I wake up, I have a person who helps me get dressed, but I wake up and have these muscle spasms that I get in bed and they can lock up my arms and legs. I’m used to them now. You wake up every morning you’re just laying in bed stuck in bed. Some mornings I don’t think about it, but some mornings I’m like Yeah, why the fuck did this happen? Is there anything that’s going to happen in life that will make me think Oh this was worth it, or That’s why this happened? Is there something that’s going to give me that kind of understanding or purpose? I look for that too.
Everyone, all of us, we’re all, at the end of the day, like, Why the fuck are we here? Why does anything happen?
Yeah totally. You don’t have to be a disabled person to wonder what your purpose is in life. What am I doing? Should I be doing more? Those are existential questions we all face, but for someone with a more prominent physical disability those are little more obvious.
Sometimes I get the impression from reading and listening to people with disabilities that people almost treat them like they’re the fucking troops or something? Thank you for your service, sir. Does that analogy make sense to you?
The way people are like Oh you’re an inspiration? Yeah… it’s another double edged sword. A lot of people say I’m an inspiration and on the one hand you’re like, when something like this happens to you you only get two options either you just lay down and die or you keep going every day as best you can. I think in general people are capable of more than they give themselves credit for. A lot of times people will be like I could never do that and it’s like, well, yeah you could. You just do. What are you going to do kill yourself because you can’t walk? Unfortunately there do seem to be these portrayals in media that disability is this end of the world thing. But if some people are disabled and do want to end their own life I think that’s a whole other discussion.
But the inspiration thing. When I write or talk to people I say if I’m an inspiration to you I hope it’s because you see my vulnerability and willingness to be honest about the things I’m going through. I don’t want to be an inspiration for… What happens a lot of time is people do this thing where they’re like You make me thankful because you make me realize my life could be worse. Which is kind of a shitty thing. I’m glad I made your day better. I get where you’re coming from you’re not trying to shit on my life, but…
Am I doing that?
No. I don’t want you to feel like that.
No! You can tell me.
No! It’s hard to explain. You didn’t do it don’t worry. There’s just times when people straight up say that. You make me grateful. But it’s hard. When I write I do write with a sense of: I’m thankful for what I have. Even though I’ve lost a lot of things I try to be thankful for what I have. I’ve got the ability to write and communicate. I think it’s good for people to remember to be thankful for the things they have and not take them for granted but I don’t enjoy my life being used as a comparison. It’s tough. It’s a thin line.
I think you probably know from reading my stuff that you could tell me to fuck off if you need to.
Yes, you strike me as the type of person I could be a straight shooter with. I don’t know if this is a Midwest thing but I really do see people’s best intentions. I know that when people say things like God has a plan nobody is setting out to say some shitty things to me. I get that comes from a well meaning place. I know that intentions aren’t everything though so I get why that can really bother some disabled people. There are some days when it’s thrown me off.
The thing that’s hardest about physical disability is people feeling entitled to know what happened to you. It’s happened on the bus or at the park. It’s sunny and I’m chilling and someone comes up and just wants to know what happened to you. I’m a pretty good looking guy. I maintain my youth. People say you don’t look like you belong in a wheelchair. First of all that’s a weird thing to say and second of all you just walked 500 feet across the park and talked to a dude with his headphones in and asked what happened to him. It may feel innocuous to you but it was the greatest trauma of my life and you want to make me relive that right now because you’re curious? I’m not a very confrontational person. I have trouble saying no to that question. There are days when it’s thrown me off. I was like, hey man, I was having a good day.
Another thing that happens is lot of times it’s ostensibly about me but really people want to talk about themselves. I’ve had people ask me and then be like Oh well I fell one time and was almost paralyzed and I’m like, yeah but you weren’t. My family always laughs. We seem to bring everybody’s stories out of them. If there’s a person at the grocery story or on the bus who wants to tell a crazy story they’re going to tell it to us.
I think I consider it more of a gift in life than a curse. I’ve heard a lot of great stories, but somedays you’re just like I’m trying to go to the store right now. I’m not here to have this existential life discussion with you.
What do you listen to on your headphones?
I listen to a ton of podcasts. All the sports ones. I listen to Bill Simmons. True crime. I listen to audio books. I’m a big history buff so I listen to all of the things on history I can get my hands on. Military history. Religious history. Greek mythology. All that kind of stuff. I’m not a very big fiction person I’m more into non-fiction.
What sort of bands do you like?
I’ve been bad about listening to music the last couple of years. I got to this point and I don’t know if it was because of podcasts, where I stopped finding music to be very engaging if that makes sense. I was more like I’d rather listen to something where it feels like I’m learning a little bit. Not that listening to a sports podcast counts as learning. Just that engagement factor. I can’t sit down and listen to an album.
I know what you mean. A couple years ago I had this shift where listening to music all alone made me feel even more alone but hearing people talk I felt like I was with someone.
Yeah it’s interesting. I will almost always go to sleep listening to an audio book or podcast. The voices kind of put me out. When I was listening to music I was listening to hip hop and indie shit. The National is one of my favorite bands I love them. I probably shouldn’t listen to them though. When you’re depressed they have that way of making depression feel good. It’s something I’ve thought about over the last year.
Have you ever thought about doing a podcast?
No! I never wanted to do one. I’m just a writer. I guess I’m a musician, too but I’m a writer I don’t want to figure out a whole other thing. This is my podcast.
People say it to me too and I’m like I dunno it’s a different beast. The one thing that does make me want to start it is writing is more difficult for me these days. I miss being able to sit down at a keyboard and type 100 words a minute. There are times when typing is physically tiring for me. I think maybe I could cover more if I did a podcast. Bob and weave a little more aimlessly.
You have a very pleasant voice and you’re a good conversationalist so there you go.
Well thanks, if I ever start one I’ll call you up.
Yes I’ll owe you the interview back. One more thing. You said there were certain tropes in writing about disabilities you try to avoid?
I think we talked about it a little bit. Probably the inspiration thing is what I try to avoid. And the thing about look how hard his shit is you all should be grateful for what you have. I don’t like to do that. Or look at how hard his shit is you shouldn’t be complaining about anything. Fuck that dude, that shit is real to you. Yeah I don’t walk but there’s someone out there who has two kids and a crazy schedule and can’t get where she needs to go. She gets to complain too. All the hurdles that we face they feel very real to us and I don’t think it’s fair or right or even productive to be like your life isn’t as hard as this other person so what am I complaining about?
I was thinking a lot about what has helped me process the trauma and I think being honest about the hurdles I have is just like being real about stuff. Life is hard for me in this way but it’s good for me in these others. Just that ability to still…I’m just glad to still be feeling. I’ve never gotten numb to the whole thing which is what I would worry about more than anything.
I remember when I was first in the hospital. I use an electric chair mostly. I was learning to to drive it, you gotta learn to drive it. I was with my physical trainer and we got to elevator and she was like see if you can press the buttons. I was trying for two minutes. I was like, I can’t press an elevator button. It hit me like a ton of bricks. When I was in the hospital I had a pretty good sense of humor about everything. Part of it was everyone around me was pretty down and I was feeling like I gotta pick everybody up. Not only that I wanted to show people I was still me but to show myself I was still me. I’m the youngest and the youngest tends to be like the peacemaker.
But I couldn’t press these buttons, man, it just hit me really hard in the moment. I started crying pretty good. I just cried and I didn’t say anything. Finally I gathered myself a little bit. I said I’m sorry. My therapist said, she said, you know I’d be more worried about you if you didn’t cry. That kind of hit me that has always stuck with me. The things we go through, the feeling can be really heavy and so hard. But I’m so glad to have them. Sometimes I feel hurt about what I’m going through but I’m glad I still feel the ups and downs. I think that everybody should feel your ups and downs. You’re allowed to do that. Try not to stay down for too long though.
Man I’m sorry, but you are an inspiration.
I don’t mean it like that!
Yeah, yeah. I mean I wrote this piece the other day and I was remembering how I like to go to church for Christmas Eve. You go church and at the end you hold the candle light up and sing. I remember the first time going after my injury I was nervous I wouldn’t be able to hold the candle up. I tied this metaphor into holding the candle to holding my life light up and being nervous I wouldn’t be able to be a light for people anymore. We may say the word inspiration but most of do want to be a lighht for people, your partner, kids, somebody… or for yourself. You want to be a light. I feel writing has been really rewarding for me to get messages from people who say I was having a tough time and I read your words and they helped me. That stuff feels good. I do want to shift people’s perspective sometimes. Maybe there is a different way they can reframe their circumstance. That is something I want to do. I know there’s a lot of disability advocates that get down on the inspiration porn of disability and I 100% see that stuff. I don’t like to push back on that but sometimes I’m like you know what shit’s allowed to be inspiration sometimes. It just is.
Don’t worry I didn’t earn any lessons.
Haha you know my number man. If you’re ever having a hard time about how to make it through you can always call.