That’s a heavy question. Off the cuff, I would probably say I would name the book, “No Pain, No Gain.” The chapter I am now, I would probably title it “The Glory Years” or “The Glory Days.”

The name and title of the book would be “My Sweet Sickle Cell Journey.” I would name it this because sickle cell is a lifetime disease, you’re born with it and you’re going to die with it. The name of the chapter I’m currently in would probably be “Adulthood: Chapter 35.”

If this was a book, the title would be “She Did It.” She was strong and she persisted. Currently I would be in chapter…I would be in the middle. I would say maybe she knows…she’s going forward. “Going Forward.” Everything that I got out of this, you know how to be strong, how to be persistent, courageous, that would be me. And I hear a lot of times, but sometimes you don’t believe yourself, you don’t believe it. But I think that’s where I am now. I learned to hold my head up and just know that I’m going to be okay. I have a lot of pitch styles. Everything’s going to be alright.

As for, if this was a book, if I can just incorporate everything I’ve been through into a book, the title of that book would be “A Survivor’s Struggle,” because I feel all sickle cell patients are warriors and survivors of this really, really big diagnosis. It’s a really big ordeal, and I think it just doesn’t get enough awareness as it should. It is a deadly disease at that, so yeah, it’s very important to discuss that. If I were to create a book, it would be “A Survivor’s Struggle” and a chapter in the book, let me think, would be just starting off with the pain. The name of that chapter would be “Pain.” I would make it just title it as “Pain,” because that is the main factor of what sickle cell is surrounding. I would love to just start off the chapter right away by saying how excruciating the pain is and explaining that in full detail. Yeah. I think that’s the best way to get the message across.

I believe that the name of the book would be that “Life is a Marathon and Not a Sprint.” And the reason why I would lean towards calling the book that is because sometimes people who have this condition, the life expectancy is relatively short. And people who have this condition do not get to live a full life as the average person does. So I would name the book, “Life is a Marathon, Not a Sprint,” because that would be my wish that life would be long for my loved one, and not quick and not short. And that she would experience everything that everybody else who is born, and doesn’t have medical challenges gets to experience. The name of the chapter that we are currently in would be “The Transition.” And the reason for that is because she is 15 years of age. And I, as her parent, am beginning to look toward the time when she will be transitioning from pediatric services and support, in terms of her medical, to adult services. And as a parent, that brings concern. So the chapter would be called “The Transition” for the phase that we’re currently in.

The name of the book would be “Hell.” The chapter…I don’t mean to laugh but that’s just true. The chapter that I’m currently in will be “Blissful.”

“How to Live With Sickle Cell Disease and Keep a Positive Attitude.”

I think my title of my book would be, “How to Win With a Chronic Illness.” That would be the title. And the chapter I’m in would probably be, “How to Win With a Chronic Illness.” I think living with a chronic illness is quite challenging. Only those who have some form of chronic illness can understand the different challenges you go through. So in a way it’s very important to show… let people know how to win when they’re living with a chronic illness. The chapter I’m in right now, I probably would be labeled, “Surviving,” because… so I’d certainly be in right now.

The story of my life would be right now, would be “Unbreakable.” And I would say “Unbreakable” because there are so many fights in my life that a normal person would have wanted to give up. And the chapter I would be right now, would be called “Fighting Back.” Because right now, I’m not working, but I’m trying to grow my brand and I’m trying to grow myself. And most people that knew me when I was a child that counted me out, when they look at me now, they won’t believe it’s me.

The title of my book would be “Gratifications of Living with Sickle Cell.” Where I would be currently in the book with my daughter is a continued school journey. Of course, this school journey would consist of COVID, so that would actually be a new type of chapter in the book, “School and COVID.”

Oh, this is a pretty hard question. I hadn’t thought too much about this. I’ll have to name it “The Long Painful Journey,” and the chapter I’m in now would be, “New Beginnings.” I just moved into a new house. Me and my son. He now has his own room. So it’s just a lot of new beginnings that I’m interested in to see where it’s going to go.

I believe if I wrote a book, I have thought about writing a book, that it would have to have the word “sick” in it and maybe “Sick Insane: One Person’s Path to Navigating Sickle Cell.” And the chapter I would be writing now would be about being an adult, full grown adult and the challenges of addressing being basically marginalized in our society and how to better cope with that. What are some coping strategies for adults like support groups, ensuring that you do get social security disability if that’s something that you need and ensuring that you also have physicians that know about this disease. Like I said, the pediatric care is where they spend most of their attention, which makes sense, because children are more vulnerable, so you want to protect them. But also adult sickle cell patients are a minority group and they are a vulnerable group simply because there is a scarcity of resources allotted to them. I would definitely draw out the fact that other diseases, which have similar, more funding like cystic fibrosis, but have fewer, it’s a less rare disease, meaning more people have it, have sickle cell than cystic fibrosis, but they’re able to raise money because of the communities that these groups come from, such as the Jewish community. And Tay-Sachs has an ability to galvanize and really raise money and also put on pressure to their community doctors to help. And that has been really effective. So I’m hoping if there was a book written that I would name it, again I said “From Sickness to Sanity: One Man’s Journey With Sickle Cell Disease.” And hopefully there’ll be a chapter on triumphantly, not just surviving, but thriving.

I think the name of the book should be “The Pain You Don’t See.” And the chapter I’m in right now is… I’m on chapter 27. And so far year 27 has been kind of crazy, guys. I would definitely tell them to tune in for all the details because year 27 for me has been quite… Health wise, it’s been a really good year. I’ve been able to stay inside. And I think a lot of this has to do with what’s going on out in the world with COVID and everything. I have been able to stay inside. I’ve been able to keep myself a lot healthier. I haven’t had to make as many trips to the ER, as I would had I been taking the kids back and forth to school every day or having to work in the actual hospital and not given the chance to work from home. So, yeah, chapter 27 would be currently titled “Crazy 27.” “Crazy Year 27.” Yeah. And the title would be “The Pain You Don’t See” because I’m always in pain that they don’t see. Sickle cell isn’t a pain you see. It’s not something, I look at someone and I’m like “Oh, she has sickle cell,” or “Oh, he has sickle cell.” “The Pain You Don’t See,” that’s the title of my book.

I’d say maybe, “The Sickle Cycle,” and I think I’d be on the chapter, “Growth,” because since I’m 30 and realized that there’s a lot of stuff I could have been doing as soon as I turned 18 and I was on my own that could have improved my health. By now I could have been exercising every day and still taking vitamins, herbal teas, different things that could have kept me out of the hospital more. I should have been following the crowd trying to do what my peers were doing. But, yeah, definitely, “Growth.”

If I could name a book, I would name it “Chronically Sickle.” And if I was to name the chapter of right now, it would be “Surviving Through Pain.”