Alison Self is a queer singer/songwriter and poet. She is from Petersburg, Virginia, has lived all over the United States, and currently resides in Oregon. Alison was diagnosed with colon cancer in late 2018.
Alison talks about her creative process, cancer experience, accessibility to health care, mental health, and addiction. Alison has a spitfire personality, is unabashedly herself, and unapologetically speaks her truth.
Cancer Queers: Tell me about your art, songwriting and poetry in particular.
Alison Self: I’ve always written poetry even before I started writing songs. I was an angsty 12 year old with a live journal. Some of those poems are god awful, but some of them are really good, which is surprising.
After that I started playing music and writing songs. I’ve always had a problem with writing songs because I’ll write a perfect chorus. And then I’ll look back at my notes from a few years ago and be like “oh yeah, I was writing that song.” When I write songs either I typically write them in one go or come back to them years later.
Years ago, I just started trying to write poetry every day because writing is like a muscle, the more you write, hopefully the more you write. In 2009 was when I first read Bukowski, and I just felt so seen. I love the line where he’s like, “Trying to be in love is like trying to carry a loaded trash bag over a rushing river of piss.” And I was like “damn you were drunk as fuck when you wrote this, weren’t you Chuck?” I've had people tell me that I’m like a female Bukowski or Bart Simpson and I’m like “Thank you, I think?“
There’s a lot to unpack there. His writing helped affirm that I can write what I want and be myself. I’ve always just been myself, for better or worse. And my last name is Self... oh my god.
CQ: Speaking of who you are, where are you from? And what were you doing before your cancer diagnosis?
Alison: I was born in Petersburg, Virginia, March 13, 1987. My mom sent me the time because I wanted to look at my astrology chart but I can’t remember. It’s probably on Costar or something. I grew up in Petersburg lived in Richmond.
In my early 20s, I lived in Roanoke for a couple months, lived in Nashville, lived in Maine working on an Apple Orchard, Denver, Austin, and now Portland. When I say lived, I mean places that I’ve stayed for more than a couple of months or paid rent.
Before my diagnosis I was living in Austin playing music, partying, and bartending. I was working almost full-time, and I was making just a little too much money to qualify for “poor people's insurance.” I was just doing what I do everywhere. Oh and I was shitting blood for a year.
CQ: That brings me to my next question, what was your accessibility to healthcare before your diagnosis?
Alison: It’s funny. Before I came here I was just rereading all of my Facebook posts and all my updates about my diagnosis. Rereading it just makes me so fucking mad.
Personally with any kind of trauma I just laugh and save it for later. People process shit in their own way. So I was like something is wrong, because almost for a year straight I was just shitting blood. I wasn’t gushing blood, I just started noticing a little bit,and then a little bit more. I was like “okay I drink a lot, maybe it’s like an ulcer or something.”
When I look back at living in Austin I’m like, “how in the fuck did I not die?” I went to the emergency room a couple times. At one point I had a come to Jesus moment – put away the internalized classism. Stop trying to ignore what the fuck is happening with your body.
I hadn’t had health insurance since I was like 19 and at the time I was 31. It’s just normalized to not go to the doctor. It’s like “oh I have this thing? I guess I better just walk it off.” So I had someone I met off of Tinder take me to the emergency room.
I hadn’t had health insurance since I was like 19 and at the time I was 31. It’s just normalized to not go to the doctor.
I finally saw a nurse and told her “I’ve been shitting blood and I’ve been taking pictures of it more recently.” She asked if it was in my stool and I said, “no it’s definitely just coming through. I’m not in pain but I definitely feel like my stomach is visibly a little more off kilter. Something just feels wrong.” She had me lay on my side and wiped my ass. And tells me “you aren’t bleeding serious enough for us to be able to do anything. Here’s a referral for a colonoscopy.”
With colonoscopies, they don’t do payment plans. It’s either you pay it or you have insurance that covers it. So I was just sitting there holding onto a piece of paper I knew I couldn’t afford, and just cried in the parking lot.
So I started the process of making phone calls and writing emails. I had a social worker, who is working for an organization that helps poor people have access to healthcare. But I was in Texas and I was making a little too much money. When I was talking to the social worker, I told them that I was just about to be technically homeless in a month, because I was leaving when I was living. So I asked “do I have to be homeless for a month to be able to access your resources.” They were quiet for a minute and were like “Yes.”
I told them that I knew that their hands were tied and I appreciate their service. I did a lot of emotional labor for people like that but at the same time, I just wanted to scream. So at that time, I was just so fucking pissed that I started drinking more and self-medicating more because I’m like somebody fucking help me.
I got in contact with an organization in Austin where doctors volunteer their time. While I was at work and I went to the bathroom and started answering his questions. I was explaining my situation that I was couch hopping and was going to be leaving on tour at the end of the month.
This mother fucker had the audacity to ask “how are you able to travel but are unable to afford seeing a doctor?” And I told him “Sir that’s straight up not your business. If your organization is here to help people, you shouldn’t be micromanaging my life. Thank you for nothing. That’s a very inappropriate question. Bye.”
I ended up coming to Portland and getting food stamps and OHP [Oregon Health Plan] within a month. I went to urgent care because I wasn’t yet assigned a primary care physician to get a referral.
CQ: Perfect, we are at my next question. How did you figure out you had cancer?
Alison: So I finally had access to healthcare. I got my colonoscopy, they found a growth, sent it to the lab. I was at Goodwill and got the call that was like “hey you have colon cancer.”
CQ: What did your treatment look like?
Alison: So I had surgery. They thought my surgery was going to be shorter but it turns out the tumor was stuck to other organs. The surgery went well. They took some lymph nodes out and the cancer didn’t seem to be spreading.
I did oral chemo and infusions. I got a port put in, I did four infusions going in once a month. My anniversary of my last chemo infusion is coming up. I want to say it was relatively painless, but it wasn’t. I had neuropathy.
CQ: How do you think your cancer diagnosis affected your relationships and sexuality?
Alison: Having cancer and staring death in the face makes sure you reevaluate who you like close to you and just reaffirms a lot of shit. I had several come to Jesus moments. Like dating this person – why am I giving this person my energy?
Cancer teached a lot about boundaries. I was queer before my diagnosis. There was a point after a break up during my treatment where I was like “do I even want to date cis men anymore?” I have always related more to women. It really made me feel like “why am I giving cis men my energy?”
CQ: Did your cancer diagnosis make you feel isolated?
Alison: I know that cancer is rising in younger people but so many times people would be like “omg you are so young.” And I would be like “thank you so much for reminding me that I’m 31 and have fucking cancer.” Please don’t project your shit on me.
Sitting in the infusion room, it had a nice view outside but you’re surrounded by people who are getting infusions who can die tomorrow. I’m sitting there, 31 years old having an existential crisis.
CQ: Let’s go back to creativity, how does creativity help you process your emotions and cancer experience?
Alison: I wasn’t given a good example of how to do anything growing up. I had no role models. All I had was examples of what not to do. So I didn’t really know how to process anything. Coping mechanisms are still something I struggle with. I had a couple people ask me if I should be drinking during my treatment. I’ve always been like if I die, I fucking die, let’s just send it.
Writing definitely has helped me be able to process things differently. Especially recently because a lot of anniversaries are coming up. Like my last chemo treatment and getting my port taken out. Trying to process feelings sometimes is like “I wish the cancer would’ve just taking me out.”
Writing definitely has helped me be able to process things differently. Especially recently because a lot of anniversaries are coming up. Like my last chemo treatment and getting my port taken out.
It’s hard processing what just happened and life after treatment. I think a lot of it is just doing what you can to get through.
CQ: How has your life changed since your cancer diagnosis?
Alison: The boundaries thing is a big one. I was talking to one of my friends before I came here to do this interview and they were like “ you are seriously one of the most emotionally mature people I’ve ever met.” And it’s like I had to be.
Boundaries and advocating for myself or things that I had to learn how to do having cancer. Not allowing people to step over my boundaries and offer me unsolicited advice. In the throes of my diagnosis, I was also diagnosed with bipolar two and reconfirmed my ADHD diagnosis . It really made me want to get into healthcare or be able to advocate for people. I’m just so fucking mad. There’s people out there who are just going to die because of the healthcare system.
CQ: How long have you been in remission?
Alison: Tuesday, May 16, 2023 will be my four year anniversary of finishing chemo. The day [after the last treatment], I got on a plane and flew to Nashville for my buddy’s wedding.
My oncologist told me after 5 years I’ll be considered “cured” and not have to go in for checkups. It’s like I’m still going to look at my shit closely. And when I have a stomach cramp, wonder if it’s back.
CQ: What is queerness to you?
Alison: I’m not gay as in happy, I am queer as in FUCK YOU.
If I’m attracted to someone and want to take it there, that’s an intentional conversation and interaction with someone. It took me a fair amount of time to feel like I was queer enough.
Queerness is inherently like, fuck your social norms, fuck your gender norms, gender fuck everything. Queerness has a rich and really sad history. It’s really complicated being queer and simultaneously trying to constantly unlearn shit and be ourselves.
CQ: Last question, do you have any words of wisdom for someone who was recently diagnosed?
Alison: Hold your boundaries.
I chose to have my cancer journey very public, posting on social media. People would come out of the woodwork offering unsolicited advice. Like no I don’t want to do fucking yoga. I’m already dealing with my shit, keep your shit to yourself.
Everyone’s cancer diagnosis is different, advocate for yourself. However you need to cope with things, don’t feel guilty. I have had a lot of guilt because I still drink or smoke or whatever. Don’t feel guilty because you have cancer and can’t magically change your life and start eating healthy or get into pilates. It’s great if you can but it’s not that way for everyone. I chose to be vulnerable but don’t need people's advice. My life is my life.
Alison’s story shows how complicated life and cancer diagnosis can be. She had to advocate and fight tooth and nail to get her diagnosis. She is a raw and complex person.
Everyone’s journey is uniquely theirs. I am grateful she shared a small piece of her journey with me during this interview.
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