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Disease Progression - A Changing Identity

Transcript

Steve

I was just three weeks away from achieving my dream of getting to suit up in a college uniform to go out and play basketball and achieving this dream and the nephrologist came in and said, I'm very sorry, but there is a good chance you are not going to be able to play college basketball, you have CKD. At that moment, everything sort of shattered around me. On my way back to my dorm, I remember I just bawled my eyes out. I was that close, and it was just taken from me. So, I had a lot of anger towards my coach, towards the doctor, and towards this supposed disease that I have because it had taken everything from me, at least in regards to what an 18-year-old considers everything. And so, we did not start off on a – good terms, me and the disease.

And I was very blessed that it took 14 years for me to get to dialysis. One of the things that I really, really dislike about my time in dialysis is the fact that some of that experience is still with me today and it 100% affects me. And one of those ways is my own self-image. Coming out of dialysis where you’re pretty much made to feel that you are a patient, you’re a sick person, this is who you are, this is who you’re going to be coming out of dialysis you don’t feel a whole lot of self-worth and you definitely don't feel like you add any value to this world because that’s all you can do is dialysis. And, unfortunately, I still battle with those thoughts. Even to this day I find myself calling myself worthless, having no value to this world, and not really understanding why I exist. And that’s a very, very difficult thing that is still with me from dialysis and even through the transplant and I hate it. I hate it so much that some of those emotional scars are lingering and they haven’t gone away.

After the transplant, you’re like I'm going to be great. I feel – I'm going to feel great. Like this is amazing. And then, all of a sudden you are released from the hospital from your transplant and you’re at home and you have this feeling of, huh, well what now? Because your entire adult life you have been the sick guy. You are the kidney guy.

As a matter of fact, your disease and your journey with the disease is so extremely public that legitimately is what the public sees you as. And I struggled with that because I didn’t know who I was now. And I like to equate it to when you’re finally released from prison after 16 years. Yeah. Your life stopped. But guess what? The world didn’t. And you step back out and you’re happy. Okay. All right. I'm free. But then you get to that point you’re like, well, wait a minute. Is anybody going to want to hire me? I haven’t been working for a while. Well, what would I do? I can’t go back into my field. It’s pretty much left me behind. Who am I? And then you start going into a spiral and you go through this whole identity crisis in trying to find out who you are now.

It took me a couple years, but I think I have finally found out why I'm alive, why I'm here, and what value I can bring. And it has basically taken my mental health and just elevated it and it’s pushed out that evil depression. And it was a struggle. It wasn’t something overnight. It did take me about three, three-and-a-half years but I finally got through it. I do a lot of advocacy work. And I find so much joy in being able to talk to other patients, being able to be that person that they can listen to and be like, oh my goodness, this is great, this guy gets it. And that’s where I find my joy.

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