1. What is your name, and where are you located?
My name is Reginald Cineus, I live in Atlanta.
2. Do you know what type of Sickle Cell you have?
I have Sickle Cell SS.
3. How would you explain life with sickle cell, to someone that knows nothing about it?
From the beginning things were a little unusual, the doctors slapped you on the butt like they do for all newborns to induce crying which triggers their first breath but you didn’t cry and was immediately rushed to emergency care. Growing up with sickle cell is like watching a movie about childhood but not remembering what it was about, and like the viewer remembers the colors, the character’s tone of voice, and the ambiance of the setting you remember the pain, the hospital trips, the isolation, your supporting family, and the great health professionals that worked with you. The pain of a sickle cell crisis feels like being stabbed internally and endlessly by large needles in your joints, stomach, chest. As a youth these episodes happen frequently and seemingly randomly, you’re a child and then you’re not.
This is the pattern of your life as you grow into an adult a pain crisis here, a pain crisis there, between the good times, between the bad, pneumonia because your extra susceptible to infection, a week lost at the ER here, a week lost at the ER there when its too much to manage at home, you miss crucial moments like graduations and proms but sometimes you’re out just in time, you find out there are gallstones in your gallbladder caused by the excess bilirubin in your system, surgery, then back to life like nothing happened, then another pain crisis, this time you need the blood transfusion. Father issues? Mother issues? Sexual shame? Gender and race issues? You don’t have time for that you're trying to re-experience the childhood you lost. One more major pain crisis! You start realizing that if you don’t face these issues they trigger your pain episodes. You cycle between self love and self loathing but at the core you just hate this hand you were dealt. Sometimes you don’t feel a part of this world. What is dissociative disorder? You don’t need something extra after sickle cell? You hate being looked at as weak, but can’t deny your weakness has delivered you most of your strength, simple things are made complicated not only in the physical, you’ve felt like you’re in a race against time though they tell you people like you are living longer than ever. Some of you’re emotion you don’t show because they’ve been repressed for so long at this point who knows how intense it will be, you have an internal strength that sort of scares you because you’re not scared to die but maybe you’re scared to push your limits and that prevents real life. You’re avoidant in your relationships? You’re anxious in your relationships? why? Maybe you learned to keep people at a distance so they don’t see you in your pain and weakness. Or maybe you learned to latch on too much to relationships in fear of being in this alone and you fear being abandoned by others who’s life you perceive as moving faster. What's Priapism?!
While all this is going on did I mention your in a pain crisis again, another hospital ER visit, this time a week, last time two weeks. You get out of the ER, you tell yourself you're strong so you pick up the pieces, but who can be this strong for so long. 28 years now you have so much respect for life, for other’s pain, you find other’s with the same condition to connect with. you ebb and flow doing your best while falling into old dysfunctional patterns you developed to cope with all the pain. You’re older now make sure you pay attention to you organs, your eyes, your joints, a friend almost lost his eye sight to sickle cell. A friend died from this, he was 24, you’re 28. It felt like you almost died that last trip to the ER four years ago, that could have been you. Another crisis.
You're becoming more healthy, you want to give back, you start a blog sharing everything you’ve gathered. You think my children will never experience this, the cycle ends with me. You love yourself, You can’t believe you're actually turning it around.You changed your internal perspective from having the burden of sickle cell to you having a super sensitive body that is always sending you messages when things are not right in your life. You knew your own mortality before you knew anything about your race, gender, geography, and heritage so you have unique outlook, freedom, and way of navigating through these identity constructs. Still, another pain crisis. Who are you, why is this happening to you, are some major questions that came up early for you and you've asked them for so long and so often that you now have answers, purpose, and are grounded in who you are. You learned play strong early on because you could see how the pain you’re dealing with impacts the people around you so you can tell when another is doing the same and are highly emphatic to another's pain. You have an insatiable thirst to do something good, something great, to be beyond your genetics but you’ve also known and were conditioned by pain too early so you tend to get in your own way but you still progress. You operate on an identity construct that's very liberating, weighted with responsibility, and rare.
4. Based on the state of sickle cell treatment today, are you optimistic about the future?
Yes I’m optimistic, I don’t think I’d be able to function the way I do fifty years ago. But I’m even more optimistic about the availability of information today. So much work is being done on natural healing, emotional health, mental health, uncovering trauma, spiritual growth, natural forms of physical training. To me having very good doctors, good diet, and good resources to manage sickle cell are important but a lot of my progress in being healthy with sickle cell happened by doing work in other areas that cause emotional turmoil which eventually lands me in a pain crisis. If it wasn’t for me seeking help from professionals in all these realms, of psychology, mental health, emotional maturity, relationships, trauma, and personal development I’d be in a very depressed state. We have to deal with the physical ailments of sickle cell, but we also have to deal with the effects of that the experience has on you and how it couples with other deep wounds in your life, parental traumas, poverty, sexual shame, etc.
5. what are some things you find is the absolute worst thing to do or experience if you have Sickle Cell?
The worst is the feeling like you are less than capable than a normal person, the feeling of not belonging, of having heavy sense of disconnect, of being slowed down. For me growing up with sickle cell I was very isolated, I didn’t know anyone else with the same condition, at school kids made fun of me because of my yellow eyes and smaller body frame and it didn’t help being absent from school all the time due to the pain. I felt like I was always pretending to be ok while not knowing why everything was happening the way it was, I was confused and lost a lot of my childhood and even worst are the addictive patterns I developed to escape that reality of those feelings (not drugs but being addicted to turning off my mind and emotions through television, books, addictive foods, daydreaming, repression, codependent relationships, sex, debilitating expectations, and a constant state of not being present. A lot of these became/fed my current strengths but only after a lot of self work did these become jewels). The physical pain passes, it can be managed but the emotional anguish and copping habits can linger indefinitely if not properly addressed.
7. What do you feel personally triggers your pain?
Keeping an unhealthy space emotionally, physically, mentally, exerting to much energy, extreme cold, poor food choices, and dehydration.
8. What are some of the limitations you feel we face?
Besides the obvious physical limitations, I sense we face the limitation of feeling out of place, and anyone who feels that way tends to navigate through life in a reactionary manner doing things or reaching milestones just to create a sense of belonging, of being normal, of being strong, or of being enough and not coming from a deep purposeful self driven place. I know there are a lot of people without sickle cell who deal this circumstance but with our history we're prone to this pattern and it's even more dangerous for us because living on automatic without understanding what's going on beneath the surface of everyday routines/checkpoints leave our condition to be triggered by unresolved issues and repressions.
Also I think we face the limitation of leaning too much our health care system. With a condition like this it is absolutely essential to work with your doctors but you also have take the responsibility for doing your own self care. It’s you who’s living with this 24/7 so you have to do the work and research of understanding what’s happening in your body. You must understand your doctors’s terminology, what you’re taking, you have to self evaluate, research alternatives, and experiment.
9. There are many successful people with sickle cell living their dreams would you consider yourself one of them, What do you do?
Yes I do, sickle cell doesn't get in my way anymore, if anything it helps me bring my dreams and goals closer. I'm a fine artist/entrepreneur. My art involves my deeply personal but universal work that manifests as sculptures, paintings, installation art, performance art and my business where I offer my services in creative direction, branding, and graphic design.
10. How old are you when you started doing art?
I’ve always been drawing or if not drawing daydreaming and creating mental movies from whatever was around me,"The Secret Life of Walter Mitty" that’s me all day everyday. I started to create more in high school around 15 and decided I might be able to be an artist when I was 19-20, but only in the last couple of years beginning when I was 25 do I feel that I’m falling into being and artist and stepping out of my own way though I’ve always been an artist.
11. We love your work can you share with us some of your most passionate/popular pieces?
12. If you could share one thing with the world what would it be?
I would want to give everyone the ability to pursue their own personal education the way the they instinctually see fit and with full support. Our own personal paths and self direction calls us to inadvertibly see the real world before us even when we start off by doing it for selfish reasons, and peak experiences give us a frame of whats really important giving us the ability to make real decisions. Only then are we able to come together to tackle the issues threatening our world.
13. If you could trade having Sickle Cell with all the money in the world would you? and why
Thats a tricky one, if I was trading it for money now at my age yes I would because it feels like I’ve learned most of was needed to learned of this experiecne and it molded me into someone who could use that wealth responsibly and in a manner that everyone truly wins. However, if it’s a must that I trade being born with sickle cell with all the money in the world..I don’t know. I’ve gotten where I am by chasing all inadequacies and repressions and pain I felt has a child and learning how to correct how I perceive them or see them as irrelevant to begin with, if I didn’t have these trials in my younger years and learn to alchemize them into positive traits that make me valuable to my environment I coudn’t be trusted with wealth and life.