Humanitou hosted a pop-up event during Arts Month as part of ArtPOP, a local-arts series supported by the Pikes Peak Arts Council and the Cultural Office of the Pikes Peak Region. Participants shared stories and were photographed during 30-minute sessions. The conversation below is one of seven in the Humanitou ArtPOP series.

Christine Savoy-Johnson is a spoken-word poet that goes by the name “Savage Intellect.” She’s a wordsmith with a big heart and significant things to say. 

When Christine sat with Humanitou, she shined light on a culture of silence around illness in black and brown communities. She talked about the obscure and incurable condition she lives with, knowing she already has outlasted her doctor’s prognosis.

She is at peace. But she is not interested in being silent.

Meet Christine Savoy-Johnson.

Humanitou: When you applied to be part of this Humanitou ArtPOP experience, you mentioned chronic illness, self-love, family, death, and how you use poetry as a healing tool or process in facing these things. What is it you’d like to share about that?

Christine: When I was 14 years old, I was diagnosed as bipolar schizo-affective. My dad was not accepting of it at all. In brown families, we don’t talk about that kind of stuff out in public. It’s something that is private, and if you talk about it in public, it’s kind of like you’re putting your business out in the street. So it’s frowned upon.

That’s why I’ve always made a special point to speak out about my mental illness as well as my physical illnesses. I feel like brown people are stifled. It’s a cultural thing, and I hate it. 

I made sure I taught my kids the opposite of that, like, “You can come to me and talk to me about any feelings that you have, how your body feels, anything.”

I dealt with the bipolar all through my teenage years. I still deal with it now. But then about 10 years ago, I got diagnosed with a really obscure illness. Sometimes it comes with diabetes. Sometimes it comes idiopathically, which means they don’t know why it comes. Mine is idiopathic.

Basically what it is is my stomach is paralyzed, so I can’t digest food. It comes with a host of horrible symptoms that are only manageable. There is no cure for this. The medication that I take to try to control it is experimental all the way from Canada.

I want to bring awareness not only to this illness but to illness, in general, because as I have gotten sicker over the years, I’ve noticed that I have been subjected to a lot of ableism. 

We’re all human beings. We need each other. So we need to reach out to each other. That’s what I want people to understand.

Because of my disability, I’m kind of pushed out of certain circles and arenas. That really hurts my feelings. People just assume, “She’s probably sick, so we’re not even going to invite her.” No. Check in with me. See how I’m doing.

So I started going to a therapist, because it was hard for me to manage all these feelings, knowing that I’m probably going to die by the time I’m 60. When I started seeing my therapist, I started journaling. That’s where the poetry came out.

I can’t seem to journal like a normal person would. My pieces always come out as poetry, which is fine with my therapist and she loves it, but that parlayed into doing slam poetry on stage. I’ve done a couple of slams. Unfortunately, I didn’t win, but I was a runner-up a few times.

As I’ve gotten sicker over the last year or so, I’ve had to drop out of the scene completely. That breaks my heart. There’s a narrative out there right now about me that is not exactly true. But since I’ve been so sick, I’ve not been able to correct it. So the way I correct it is through my poetry.

This is my book. One day, all the feelings and stuff in here is going to be an actual, hardback, published book. That’s what I’m working on. I’ve done a few smaller publications in the last year, where I’ve had my pieces in other people’s anthologies. I was featured in the 2019 Colorado Best Emerging Poets.

I just want to put a face to mental illness and physical illness in black people, especially for men. It’s really not talked about with men, either. My husband, he’s like a god. He works everyday in pain and he just doesn’t talk about it, because that’s the way that he was raised. 

I just think that’s so wrong. I just want people to know we get sick too. And it’s OK for us to talk about it, regardless of what your heritage has said and what your grandmother told you. 

No, it’s okay to talk about it. It’s okay to ask for help. It’s okay to write about it. It’s okay to recite about it. It’s okay. It doesn’t have to have that stigma anymore. I hate that stigma, “If you’re black or you’re Latina, you keep that in your family.” That’s not true. 

We’re all human beings. We need each other. So we need to reach out to each other. That’s what I want people to understand. You don’t have to be so secretive. It doesn’t have to be that way. And it’s easier when you’re not.

Humanitou: Coming from within that culture of silence, how did you get to this place of courage not only to share your story of illness and pain through poetry, to do it publicly and encourage others to speak too?

Christine: I think my mom. When I was diagnosed with bipolar, my mom went out and read every book there was, took every seminar there was, everything she could find to try to help me. My dad kind of took a step back and didn’t talk about it. My mom did everything.

Love is something that you do. It’s not just a word. It’s not just an emotion you can throw out there. You do it on a consistent basis and you do it with everybody that you can.

Then when I got diagnosed with gastroparesis, again my mom went to all the seminars and learned everything that she could, and told me, “Anytime you need help, just ask.”

All you have to do is ask. That’s what my mom taught me, and that’s what I trickled down to my two sons and my daughter.

I’m hoping that by my mom opening up for me and me opening up for my kids, that’s going to continue, that my daughter will open up with her kids and my sons will open up with their kids, and it will just continue. 

Because this is a conversation that needs to be had, and a lot of people want to shy away from it because of the race issue. And a lot of people want to shy away from it because of the ableism issue. But it’s time. We need to put it out there.

Humanitou: Will you tell me what you mean by ableism?

Christine: The nature of my illness is sometime-y. Sometimes I feel good, sometimes I don’t. People that are able-bodied don’t seem to understand that. They think I’m picking and choosing things that I want to do. 

So then they get angry and they start shunning me from things. It’s like, “You probably can’t do that, because you’re too sick,” without even asking me. Just ask me. If I’m having a good day, then I’ll do it for you. 

I find people getting angry at me, because I’m not doing what they want on their timetable. It’s hard for me to explain my body doesn’t work the same as yours does. Every body is not the same. It just doesn’t work that way. So I’m losing occasions to speak, because people just assume I’m too sick. 

If I do have an opportunity to speak and then I can’t go, and have to call and cancel, it’s like, “She’s such a problem. She’s not really even that sick.” 

Christine Savoy-Johnson | Humanitou ArtPOP Series

Because if you look at me, I look fine. I don’t look sick at all. For me to tell someone I have this illness that is going to kill me, “But I saw that you were out at the bookstore last week.” Yeah, I had a couple of good days last week, so I went to the bookstore. 

It makes me so, I don’t want to say angry, but really sad that able-bodied people aren’t more understanding and helpful. 

When I tell someone that I’m sick and they go do research on my illness, that’s everything to me. That’s so flattering. That makes me feel so good. That let’s me know that person really cares about me.

Humanitou: I see on your left forearm a tattoo that says, “Love is a doing word.”

Christine: They’re lyrics from “Teardrop” by Massive Attack. Poetry and music are what I live on. Consequently, I’m heavily tattooed and a lot of it is song lyrics that spoke to me.

Humanitou: How does that particular line — “love is a doing word” — speak to you?

Christine: You can’t just say to somebody all the time, “I love you. I love you. I love you.” OK, love me but show me. Show me how you love me. Show me why you love me.

Like my husband will say to me all the time, “I love you, I love you.” But I also hear his “I love yous” in “Call me when you get back to the house” and “Make sure you put a jacket on when you go out of the house today.”

Like my best friend all the time tells me, “I love you.” But her “I love yous” come through more firmly when she comes to see me when I’ve been stuck in the house for three weeks in bed, and she comes and lays in bed with me and just loves on me, out of her busy schedule. She’s a single mom and works full time. That’s love.

Love is something that you do. It’s not just a word. It’s not just an emotion you can throw out there. I feel like love is something that you do. You do it on a consistent basis and you do it with everybody that you can.

Everybody that I come in contact with, I automatically have love for that person. Love is what runs me.

Humanitou: You said you might only live until you’re 60. How do your thoughts on that possibility, and maybe more generally on the subject of death, influence how you’re living your life now? Most people push it away and deny that it’s there. 

Christine: I did that at first. When I was first diagnosed with gastroparesis, she gave me five years before I would be in hospice, totally not eating food and being on tube feeds. That was nine years ago.

Christine Savoy-Johnson | Humanitou ArtPOP SeriesAnd when she gave me the five years, I didn’t tell my family for two years. I just carried that secret on my heart without telling them, because I didn’t think they could handle it. 

And then finally I just blurted it out one day to my husband. He said, we need to have a family meeting, we need to talk about this.

My family is of the mind that I am going to beat this, because I’ve beat everything else. I’ve had lots of trials and tribulations in my life. But my family is like, “You’re going to beat this.” 

I hope I am that success story. I hope there’s a surgery that I can get that will send me into remission. But because of logistics and money, the surgery is really hard. 

So I really have to advocate for myself, and my family advocates for me. I have a lot of support.

If you’re asking, “Do I have any fear around death?” I don’t. I’m Catholic. I’m very Catholic. I am not afraid of dying. I’m tired at this point in my illness and, honestly, if tomorrow God decided it’s my day, I would be at peace with that. 

I think that I’ve cultivated enough love and memories with the rest of my family that if I were to go tomorrow, I think they would be okay.

Humanitou: With this acceptance of death, what to you is the meaning of life?

Christine: Live every single day to the fullest. Love as much and as many people as you can. Try to touch as many people as you can, however you can. I try to touch people by my writing. 

I’ve gotten standing ovations. I’ve come off of stage and had a young man fall on me sobbing, just on the merit of my words. And all my words are is just what is going on in my life. That’s what I want. I want to touch people. I want people to remember me. I know that there’s people I touched, and that’s what’s important to me. 

My daughter is a prolific spoken word artist, but she doesn’t write well. Her boyfriend writes like a champ, so they work together to carry on what I’ve been doing. 

I used to be a chef before I got sick. My oldest son now, he’s an executive chef. 

Everything is coming full circle for me. So I’m really at peace with my life. I think I’ve accomplished my soul’s purpose for this lifetime. When I get to the next lifetime, we’ll see what that soul’s purpose is and, hopefully, I’ll fulfill that as well.