“I am better than my challenge”: Interview with Stroke Warrior & Constant Therapy user Erin Adelekun

As part of our mission to reimagine brain therapy, we want to bring you real-world stories of how Constant Therapy has helped clinicians and patients improve their stroke and brain injury recovery outcomes. 

We were amazed when we learned about Erin Adelekun’s story. Erin is a former senior project manager who experienced a stroke nine days after giving birth and is now a devoted Constant Therapy user. On the one-year anniversary of her stroke, Erin created an Instagram page, @stroke.mama, to document her recovery and uplift others going through similar experiences. In this interview, Erin talks with us about how her life and outlook have changed since her stroke, why she turned to social media to chronicle her journey, and how Constant Therapy continues to support her as she pursues her goals and dreams. 

The following interview has been edited for concision and clarity. 

• For our readers who might not be familiar with your journey, would you mind sharing a bit about the stroke you experienced in August 2020 and what you’ve been through since?

I had a stroke 9 days after having a C-section to give birth to my baby girl. I had an excruciating headache, which was the beginning of the stroke. I was airlifted to the hospital, was in a coma for 3 weeks, and then in the hospital and rehab for 3 months. I could not walk, I had weakness in my hand because it is paralyzed, and I could not talk. I made sounds but couldn’t communicate, and my speech pathologist said that I had aphasia. She explained to me that aphasia is a loss of language because I didn’t know what it was. 

I learned how to walk again with an ankle-foot orthotic (AFO) and a cane. However, the aphasia was really hard because I am a talker— in high school, I even got the superlative “most talkative.” That was really hard for me because I could not say what I wanted to say; my mind was active but I couldn’t get the words out. I had surgery to put my skull back on my head, and that helped me remember words better. After the surgery, I still had trouble saying the alphabet but I would remember the things my speech pathologist was telling me about the alphabet that I couldn’t remember before the surgery. 

• What have been the most challenging moments in your recovery journey, and how have you overcome them?

Not being able to communicate was the hardest thing. I can communicate now, but right after the stroke, I needed pictures to tell what I wanted to say and how I felt. The pictures could not capture how I really felt. I had to apologize to my family because I would get so frustrated about not being able to say what I wanted to say, and I would just shut down when they were trying to understand what I was trying to say. I had to tell myself: “I am better than this. I am better than my challenge because I don’t want to become a person that is miserable.” The stroke isn’t the only thing about me that I want my daughter or husband to see. I needed to be more than my stroke; it would not define me. 

• What are the resources that you’ve found to be most helpful as a stroke survivor? 

I found my speech therapist to be helpful. In the hospital and during outpatient rehab, the one thing that both therapists told me to do is talk. I was insecure about talking because I didn’t sound the same; I was slow, I made a lot of noise and nothing came out, but my therapist told me, “Talk. Even if you’re insecure, talk.” So my therapist helped me with the talking, and I wanted to get a good result on my homework, so I talked, and then I combined that with Constant Therapy. 

Constant Therapy helped me a lot. I downloaded Constant Therapy’s app for my phone, so I could use it at all times—when I was bored, Constant Therapy! When I needed some lessons, Constant Therapy! When I was awake in bed at night and wanted to go to sleep but couldn’t go to sleep, Constant Therapy! 

• When did you first discover Constant Therapy, and how has it helped you as a person living with aphasia?

My friend knew about Constant Therapy and she told me, “They offer 14 days free, and if it doesn’t work, then it doesn’t work, but you should give it a try.” So I decided to, and I found it helpful from the very start of the free trial because it analyses and evaluates you: how much you know and what you can do. The modules get harder as you improve, and when I did Constant Therapy, I didn’t know how much I didn’t know after the stroke. 

For example, time-telling. Constant Therapy will say out loud “9:15,” and I’m supposed to recognize that time on the clock picture, but I didn’t. Or, as another example, spelling out words like “butterfly”— the butterfly shows up as an image in the app, and you need to spell it. I didn’t know what the word “butterfly” was; of course, I did know what a butterfly was, but I could not think of it after hearing the word. Constant Therapy helps so much because it gives you hints in the app if you want, so in the case of “butterfly” they might clue in a word like “bee,” which helps me think of what it is, and then I just needed to spell it! 

I also asked my Speech Therapist if she had heard of Constant Therapy, and she had and had an account, so we linked our accounts. She could see everything I was working on in the app.

• How did you find the motivation to continue working on your communication abilities? 

I was a project manager, and talking was what I did, so I was adamant that I needed people to understand me. That can’t be done if I’m quiet, because they might think I don’t have anything to say, so I needed for them—my husband, the pizza delivery person—to know that I know what I’m going to say. Progress can be both great and slow, but it was progress. My mom always says, “A journey of a thousand miles begins with a little step.”

• How did your Stroke Mama Instagram page come about?

One year after I had a stroke, I thought about it and decided I wanted to do Instagram or TikTok to document my recovery, for myself but also for other people. I had this saying before the stroke that “Your happiness is contingent on you.” The first day I came out of a coma, I cried and wanted to know why this happened to me. But that lasted for maybe a week. It was COVID times so nobody was allowed in the hospital to motivate or encourage me, so I had to encourage myself, and I thought: “If can’t walk, talk, or move my arms, it won’t be without trying to move my arms or walk or talk. I will try.” 

• What would you tell other people who have experienced a stroke?

“Your life has changed, but it is not all bad, and you need to think of the ‘why’—why to get better, why to do your exercises, why to try new things even if you can’t do it, because you may be able to do it.”  

To follow Erin’s journey further, please visit her page: https://www.instagram.com/stroke.mama/.

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