Today, we are speaking with Tristan Lee, a loving and talented model, actor, poet, and fashion designer. Despite having had a stroke early in life, Tristan has pressed forward to accomplish great things, including an almost complete recovery through therapy, dedication, and hard work, and there are many more great things yet to come! Let’s get started.
Tristan, can you tell us how old you were when you found out you had sickle cell?
I was diagnosed with Sickle Cell as a baby at six months old.
How were you able to cope with school and sickle cell?
School was always challenging for me. I was out sick from sickle cell most days. I was never a great student even early on due to being a dreamer. Then at age nine I suffered a stroke due to sickle cell and was hospitalized in the ICU of Geisinger Medical Center for six months. When I was able to return to school everything was different. I had drastically fallen behind of my peers. Had to relearn everything from school lessons to how my body worked. I had to relearn how to walk, and talk, among other things. The kids looked at me as if they didn’t know me anymore, and some made fun of me for looking different than them. School taught me many things especially how to live in this world as an individual. It was always a struggle to keep up with the other kids both psychically and mentally, but through the grace of God I did and graduated on time.
How did your childhood and your parents influence you in your choice of career?
As a child growing up with sickle cell I always felt different. Some days I had good days, some days I had bad days. When I was a child I couldn’t understand why. I couldn’t understand why I was the one with something like sickle cell that just would never let me play or be like other kids. My parents, especially my mom, was a HUGE influence and someone I adored and admired. She took care of me and taught me how to be strong and beautiful inside and out. My grandmother (Nan-Mum) was another great caregiver for me and taught me to keep God first and love. They were, and still to this day are, my two greatest loves in this world. My dad taught me how to stand up for myself and to protect what I love and to be a fighter or “Warrior”. They all influenced me to be the best me I could be and follow my dreams. They knew I was a creative individual from the start and never let me be anything but just that. They allowed me to be creative.
What do you do? What kind of experience and schooling does one need to get your job?
I am a professional model, actor, writer, poet, host of Spoken Word, and fashion designer. When I was in my teens my mom let me attend modeling school because she knew it was something I was passionate about. I also had some acting classes and did community and high-school theater. I took fashion design and retail management courses for about a year in college. However, the courses I was being signed up for were more focused on the retail side, and I wanted to focus strictly on the fashion design. So I am currently looking for another school that just focuses on fashion design. In the meantime I’ve found a wonderful design coach who helped me bring my sketches to life. I just recently produced a huge fashion show here in my hometown that featured my clothing line and some other local designers for the cause of Sickle Cell research and awareness in our area that really doesn’t know much about the disease. It went very well, and everyone loved my designs.
Describe a typical day on your job.
I spend most days between being creative and thinking of new designs for my collection. Then sketching them to see how they’ll look and talk them over with my design coach to get her thoughts. Then I do a lot of charity work advocating for the South Central PA Sickle Cell Council of Harrisburg, PA helping them raise awareness for our cause.
How do you manage SCD and still maintain a thriving career?
It’s an everyday balancing act for me. I can only do so much some days before Sickle Cell fatigue sets in. Then once I feel like my energies are spent I try to get rest and go back at it the next day. However, I allow myself two days during the workweek to relax so I’m not burning out.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
Yes. In my adult experience once someone finds out I have Sickle Cell they tend to treat me with care. The people that know me love me like we’re family so they are very understanding and thoughtful. Some even make sure I’m well hydrated and that I can sit to rest when I need to.
What advice would you give to someone wanting to join your profession that has sickle cell?
I would tell them to pace themselves. Listen to their bodies always and stay well hydrated. Take breaks when you can. Do your best just don’t over do it.
Has sickle cell limited any areas of your life?
After my stroke I didn’t really know how my life would continue. It left me completely paralyzed on the left side of my body. I couldn’t use anything, couldn’t even feel anything on that side for years. I felt helpless. Then I heard a pastor say “You will live and not die,” says the Lord, and from that day on that’s what I kept believing. I prayed for God to help me change me. Let me regain my abilities again. I went through years of physical therapy, occupational therapy that helped me rebuild the left side of my body. Psychiatrists helping me rebuild my mind and relearning how to talk. Until one day when I was like sixteen the hard work and prayers paid off. Even though I’m only 85% of what I used to be on my left side it’s a vast improvement of what I was at age nine waking up in that ICU half a person. Sickle Cell tried to stop me, but by the grace of God I am still here and doing more everyday than some healthy people I know with full use of their bodies.
When you do reach obstacles in your life, what helps you through it?
My faith in God first! I stay prayed up and believing in Him to get me through every obstacle. Then my family, my mom, my grandmother, my dad, sister, my puddin, and my best friends, who I can always count on for support, help, love, and strength. I am truly blessed to have a solid group of people to get me through. I also have great doctors that take great care of me. As the Word says, “If God be for me who dare be against me.” Obstacles can’t stop me as long as I have God and He has me.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
I get minor aches and pains here and there some days. When I feel pain coming on I try drinking water, and then if it continues I take some medication and keep it moving.
What is your daily medication regimen and what medications do you take when you are in pain?
My daily meds are Hydroxyurea, Folic Acid, Calicum 600 +Vitamin D, and a VERY strong prescription painkiller that knocks out any pain when I need it.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
Sickle Cell doesn’t really affect my personal life. As I said everyone that knows me knows my situation and gives me TLC when I need it. I am in a very loving relationship of three years and the person is amazing to me. We are happy and very blessed.
If you aren’t single and fabulous:), please tell us about your significant other. How have they helped you with sickle cell? How did your relationship evolve taking into account your sickle cell? When did you tell him/her?
My significant other from the start has known about my Sickle Cell. We’ve been together three years now and they have seen me go through crisis about four times in our timeline. When that happens they know just what to do. Getting me to the hospital and staying by my side. Once we lived in a second story building and I couldn’t walk. The crisis just made me go completely limp and crippled me from pain. So they scooped me up in their arms and carried me down the stairs into their car and got me to the hospital.
Looking at the 14-year-old version of yourself, what would you tell him or her if you could…?
I would tell him that you’re more powerful than you know and to just enjoy the journey and love everyone God has blessed you with, but the best is yet to come.
Is there anything else that you would want to tell other sickle cell warriors?
I just want to tell every warrior out there that God chose to battle this disease to stay strong and keeping pressing forward through any struggle. We may have Sickle Cell, but it will NEVER have us! God bless you fellow warriors. 😉
Tristan, thank you so much for doing this interview!!!