TRUTH BE TOLD

Oya

It's about still having that fight. You know, just never giving up.

Jae

It's important to have people who look like you and people who can relate to you sharing your story.

Oya

My name's Oya Gilbert. I have multiple myeloma, and I'm here to tell my story.

Jae

My name is Jae Nichelle. I'm a spoken word artist, and I'm here to meet Oya today. And really listen to what he's been through so far. I'm ready for him to tell me what words I should use.

Oya

You have to have something, because if you don't have hope, we have nothing.

Jae

Hi, how are you?

Oya

How are you doing?

Jae

Good.

Oya

It's unfortunate that it took cancer for me to see the world the way I see it now. Once I started educating myself, not only understanding myeloma, but understanding like the disparity in healthcare with African Americans, it started making me ask different questions when I went to the doctor. So I have spent a lot of time trying to reach out to the African American community.

Oya

Having somebody to speak to that looks like you, that can really relate.

Jae

It makes all the difference.

Oya

It makes all the difference.

Oya

I'm definitely the dad that wants to see my kids be better than me. What I asked God when I got diagnosed is just let me have an opportunity to, you know, make sure they're OK.

Jae

Yeah.

Oya

Right now, I say God's got this disease in a flight pattern around the airport and he just won't let it land.

Jae

Right after we had our conversation, I went in my notebook and I just jotted down lines that stood out to me. When he started talking about his kids and appreciating the time that he can have with them, I was emotional, just kind of listening to him talk.

Jaidyn

My dad teaches me how to be like a upstanding citizen. He'll teach me how to be a man in the future. He's been doing this ever since I was born.

Jace

I think there's a lot of the things that's really special about my dad. It's like he can really make us, like, have a lot of fun.

Unknown

Keep going.

Oya

You like that joint?

Unknown

Yeah, totally.

Jae

I know that he has such a love for hip hop and music.

Jae

There were a few things that he said. They stuck out immediately, and I wrote them down because they just hit me when he said it. For Oya, I hope that he feels seen and feels like this is a representation of him.

Oya

Oh my God.

Jae

Hello.

Oya

Hey.

Jae

Come in. Come in.

Oya

Right here? Oh my goodness.

Jae

In a moment, Oya Gilbert's life changes. Turns out a multiple myeloma diagnosis is not dramatic like on TV. It's just a moment. The word incurable. A moment. You asked me what I see when you're in front of me. I see a Black man trying. A Black man living in a world where we still often only hear Black men's stories when they're dead or dying.

Jae

And living looks like a lot of things. Living looks like kayaking with sons and driving with a daughter.

Oya

This moment for me is, you know, unforgettable. It's a moment that's sketched into my brain.
Some of the most important people in my life were here to witness Jae speak from the heart about me.

Jae

Living isn't always easy. It looks like battling discrimination on top of depression, on top of disease. Like a long, long road to diagnosis because a Black man's concerns for his health were dismissed for over a year. Canceled plans, hospital trips, not knowing what to tell the kids, or what this is. Finding a reason to keep going. A reason. Living looks like still dreaming.

Jae

A refusal to let cancer suffocate you while you're still breathing. Living looks like Oya. Not a patient. Not a story. But a regular man. Living looks like keeping an eye on that plane, but hoping to God it won't land. Thank you.

Oya

It's a conclusion to something I've been talking about my whole life. I'm trying to take the gift - that God's grace that he's given me, this extra time. I want somebody to watch this piece and get some hope. Just keep pressing. That's what I hope they get. Hope it brings a little joy and a little encouragement to keep pushing.

Lee

Resilience. It just means you keep going.

Jason

Acknowledging the massive scope of a person's life is daunting.

Lee

My name is Lee May. I live in Aptos, California, and I've been living with multiple myeloma for the last 11 years.

Jason

My name's Jason Cheeseman-Meyer. I am an artist, and I'm here to make a painting of Lee that encompasses more than just his likeness, but his story and his personality.

Lee

I think I just want to express what I've been going through and what my thoughts are and tell my story.

Lee

Hi, Jason.

Jason

Hi there.

Lee

Around December of 2010, I developed this pain in my rib. Couple of months passed and I still got the pain there. I can't really lift things. At that point, I knew I was in trouble.

Lee

Recently, I've been told that I've relapsed again. It's a funny feeling when you're doing well. You don't even think of yourself as someone who's got an illness. But then when you relapse, and things come back, it all kind of comes flooding back to you. It's pretty tough on the whole family.

Jason

Would you say your love has grown stronger since your diagnosis?

Lee

Yeah. Absolutely. We've been married for close to 40 years now. Love to be able to grow old with my wife. Now it looks like I'm actually going to live long enough to see a grandkid, which, when I was first diagnosed, I didn't think was a thing.

Jason

I'm hoping to give Lee an artwork that helps him see how the rest of the world sees him.

Lee

Pleasure. Thank you so much.

Jason

Genuine pleasure.

Jason

Before I interviewed Lee, I had had this idea that I was trying to present him as the people who loved and admired him saw him. After talking with him about his life and multiple myeloma and about Shelley, I quickly decided it was more important to make a painting for him than a painting of him.

Shelley

Really appreciate every day and the days that Lee feels good. It's so bright, the sky's bluer. And then there are dark days. But the little stuff just doesn't matter as much.

Jason

Them baking together when they were just kind of swirling around each other just seemed so expressive and so true about how they come alive in each other's presence.

Lee

I don't think people realize what caregivers go through. They're there with you at all the doctor meetings, they try to be cheerleaders. They try to take care of your needs.

Jason

Well, we're going to have Lee and Shelley come in and see the painting for the first time. I really want it to feel like a gift to Lee.

Lee

Oh my God. That is incredible.

Shelley

That is so great. Thank you.

Jason

You're so welcome.

Lee

That's kind of mind blowing.

Shelley

It really is.

Lee

Trying to envision what you were going to be doing. That did not come to my mind at all. That is great.

Jason

Everything I know about your story and discussion of living with multiple myeloma, this was the truest thing I knew about you.

Lee

It's a long way after my original prognosis expired. That painting really gives me an appreciation for how lucky I've been.

Shelley

This painting represents to me being in life.

Lee

Hopefully this provides a bit of inspiration for people who are facing a challenge like this. If it could do that, I would be so thrilled and so touched by that.

Mirna

I see myself as a fighter. For the last 10 years, I've been fighting for my life.

Armando

When you're going through a situation like the sickness or disease, you feel so isolated.
Sometimes you just want to be seen.

Mirna

I was diagnosed with multiple myeloma a little bit less than a month before my 50th birthday. It took me close to a year to come to terms with it.

Armando

My name is Armando Silva Garcia. I am an artist. My job is to be here and create a painting of Mirna so that others that don't know her story would want to know more.

Mirna

I just like to bring inspiration for others to keep on fighting.

Mirna

Multiple myeloma has given me a new way to look at life. Going from someone that was working a lot to someone that had to depend on others. That was very, very frustrating for me back then.

Mirna

After I got sick, I started attending church, and that's one of the things that I felt multiple myeloma did for me. Got me closer to God. And blessed me with all these people that I have found in my life. Community is just everybody around you. I mean, it doesn't have to be a small circle. My community is everywhere. I'm living with multiple myeloma, but I am living each and every day.

Armando

I think the closer we can try to paint the picture of what it's like to feel seen, the more we can understand what a certain person is going through.

Armando

Thank you so much.

Jackie

There's an appreciation of life, family, time. All those things together. It's a bond that we all have. I love my sister. She's my only sister.

Armando

I love the way that Mirna is an artist. She's a creative. She shows up every day to create community. I hope that Mirna just feels proud of the community she's a part of and all she's done.

Alejandro

Hi.

Alejandro

So I guess you had no idea what was happening.

Mirna

No, definitely not.

Alejandro

Look who else is here.

Armando

Hello, friend.

Mirna

So good to see you back. Thank you for being here. Oh my God.

Mirna

I was not expecting any of it. I mean, I still get emotional about that.

Armando

You are the perfect example of a person that lives as their truest self.

Mirna

All I want is like my story to be a story that you can conquer. It may be a painful road, but you can get there.

Mirna

What?

Vanessa

Surprise. Oh my gosh. Look how beautiful this is.

Mirna

A diagnosis with multiple myeloma is not the end. To me, it has been the beginning. My truth is, you can live for today. Today is your day.