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#ForTinu

How do you write a memorial for a friend who touched countless lives and left an indelible mark on the world and on you personally? As I began to reflect on Tinu’s legacy, it was through many tears, breaks, and profound gratitude. Writing this feels surreal and difficult because it makes the loss real.  

My dear Tinu, I hope my words do you justice as to how much you meant to me, your family, your friends, and our community.  

On September 26, 2024, Atinuke “Tinu” Abayomi-Paul, beloved daughter, granddaughter, aunt, cousin, friend, writer, and fierce and loving social justice, disability, and chronic illness patient advocate, passed away at 52 years young. Tinu served on several Global Healthy Living Foundation (GHLF)/CreakyJoints (CJ) patient leadership councils, including CJ’s COVID-19 Patient Council. She wrote and contributed to countless articles that highlighted the experiences and perspectives of Black people living with chronic illness and disabilities. 

Being friends with Tinu felt exactly like a warm hug. Every interaction felt like a warm, welcoming place to land. Years before I began working at GHLF, Tinu encouraged and supported my journey here, speaking highly of GHLF’s dedication to patients, especially Black patients. Since that time, I’ve had the honor of working on numerous of DE&I and health equity projects with Tinu at GHLF.

She was such an admirable powerhouse of a patient and social justice advocate as well as a dear friend. Tinu was the best of us, always amplifying voices from the chronic illness community and sharing resources, advice, or financial assistance. Tinu’s impact extended beyond her close friends, as you can see by going on Twitter (X) and checking the #ForTinu hashtag. There, you can read about the many lives she has changed.  

A Fight Until the End

The last two years were incredibly difficult for Tinu. In 2022, while parts of the U.S. were still observing mask mandate in schools, Texas (where Tinu lived) lifted the mask ban, and shortly after, Tinu caught COVID-19. This led to life-threatening hospitalization, causing Tinu to fear for her life. She told me she didn’t want to die this way.  

Tinu’s COVID infection turned into COVID pneumonia, which led to a resurfacing of her cancer, and the inability to work. Tinu had always supported herself through collaborations, projects, and speaking engagements with various organizations. When her health worsened and she had to go back on cancer treatments, she had to stop work, leaving her and her family struggling to pay rent and the mounting costs of her treatment.   

Tinu’s story highlights the urgent need for better support and protections for patients. Long COVID continues to impact communities significantly, with the Centers for Disease Control and Prevention data showing disparities in death rates: 14.1 per million among American Indian and Alaska Native individuals, 6.7 for white individuals, 6.4 for Black individuals, and 4.7 for Hispanic individuals. During the early pandemic years, Black and Hispanic communities experienced higher COVID-19 fatality rates, likely contributing to these disparities.  

At the time, Tinu’s experience as a Black, immunocompromised, disabled woman, was largely ignored by media and other organizations. Horrified by this, I shared her story with GHLF, and we promptly published an article “Testing COVID-Positive: My Experience as a Black, Disabled, Immunocompromised Woman,” on her experience. It now stands as a part of Tinu’s legacy and stark reminder that we must do better.  

From her involvement on our patient councils and writing articles like “Are People Dying from COVID-19 Because They Are Black in America” to participating in #CreakyChats and helping launch the #DisabledBlackTalk chat to uplift the voices of Black people with chronic illness, Tinu’s passion for advocacy was clear in all she did.  

Here are a few more of Tinu’s articles/contributions:

Tinu’s Legacy Lives On

In her final weeks, while battling her illness and turning to crowdfunding to afford treatments, Tinu used her limited energy on social media to continue supporting the patient community. When she should have been resting, Tinu was checking in on me and my health struggles and trying to make me laugh. I can’t get over how she had the strength to inspire others while fighting for her own life. I’m blessed that I got to be one of those people, and I know others feel the same.  

Tinu was often described as “one of the anchors of the disability community,” known for her kindness, fierce advocacy, and boundless generosity. A true pillar, she worked tirelessly to build and sustain mutual aid networks, ensuring others could survive. “She was the type of person that if you gave $100 to, she would give at least $20 out of it so someone can eat and survive,” one person recalled. For many, she was a source of guidance and strength. “As a Black woman navigating the health care system, she made things feel a lot less scary,” shared another. Tinu was a symbol of resilience and grace, leaving behind gifts of wisdom and strength for all she inspired. 

While I’m devastated that Tinu is no longer here with us, I am glad she is no longer suffering. The pain and grief I feel is a reminder of that everlasting love and fuels me even more to advocate on behalf of patients, especially our historically marginalized patient communities. 

Thank you for everything you’ve done for us, Tinu. You will be deeply missed, but we will carry your legacy forward — continuing to amplify the voices of patients, especially those from historically underrepresented groups like the Black patients you fought so tirelessly to protect. We will continue to pass the mic and ensure their stories are heard. 

To register to join Tinu’s Virtual HomeGoing on October 13, click here. To learn how to support Tinu’s family during this difficult time, please visit her GoFundMe page.

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