Tony: I did think I was going to die very much so. And you know, there’s a lot of nights, I’m sure you all experienced the same thing. You know, there’s a lot of nights you lay in the hospital and you’re just wondering, if you’re ever going home again.
So it’s a tough process. It’s a process that most people don’t really understand. Well, probably nobody understands it that hadn’t been through it. But it’s not only physical, I mean, it’s a lot physical. Yes. But it’s a lot mentally that you go through
JACKIE: Everyone was like, oh, you don’t look sick. You don’t look sick. Cause sometimes, and I’m so optimistic and upbeat. And then it was kind of almost an insult to me sometimes. Cause they’re like, you don’t look sick. And it’s like, well just because I’m smiling, my joints are actually really hurting or I can’t walk very far.
Tony: If you haven’t been through what we’ve been through, nobody understands the pain.
Jackie: I wasn’t able to plan my wedding or I didn’t even want to get married because I was still bald or my hair wasn’t that long. But I couldn’t work because I was too sick to work. Even after the adult stem cell transplant, I wasn’t allowed to work because my immune system was still immunocompromised, very low and I could get sick.
Tony: I can tell by the way you were talking about this, that was a hard time for you.
Jackie: It was so hard. It was so hard.
Tony: Yeah, I can understand. I haven’t been in y’all shoes before, but for a woman, I can
understand that was probably one of the most trying times of your life.
Jackie: Yeah. And honestly, being bald, I’m a very confident, positive woman, so being bald, I felt fine being bald. Actually, did you ever get that people are really, really nice to you when you’re bald? In public, everyone opened doors. I felt like a superstar, but then your hair starts growing back and then your hair is this long, and then it kind of changes. Society kind of finds you unattractive then.
Desiree: I felt really embarrassed about being bald, and about how I looked during that time when I was going through transplant. I didn’t even want to go out or do anything. That made me feel really bad. I’d never questioned why I had sickle cell. I didn’t feel bad for having it. I felt bad about some of the things I feel like I didn’t get to finish or accomplish, kind of like you. You see people that are further ahead and then you do feel bad about that.
Jackie: Maybe that’s it. We feel like we got held behind a little bit and we should have been a little farther ahead.