Tosin Coker: Published Author
Hello everyone. Today it is my pleasure to introduce you to UK’s sci-fi literary sensation Tosin Coker. A few years ago, when her first book, “The Mouth of Babes” came out with trailblazing success; I remember feeling proud that another Tosin had achieved so much notice and praise. I didn’t even realize that Ms. Coker is a sickle cell warrior ~ and a mom! I’m even more inspired reading her story and I’m sure you all will be too. Without further ado, let’s dive in. How old were you when you found out you had sickle cell?
I was 11 years old when I had my first severe crisis (I only had a few minor ones prior to that). No one told me that I had sickle cell, my parents knew, but because I’d never experienced any chronic pain episodes before then, they didn’t feel it necessary to tell me. I accidentally found my diagnosis written on an old note a month or so later. At that point, I made a conscious effort to find out for myself exactly what was ‘wrong’ with me. My parents knew the title of my affliction, but back then they had no idea what it actually meant.
How did your childhood and your parents influence you in your choice of career?
My mother had always pressed for me to utilise the talent she could see I had for writing, but as much as I enjoyed it, back then I could never have imaged that I would be doing what I do now. Personally I had dreams of becoming a pilot and I was heartbroken when I realised that because of my having sickle cell, my aspirations may have been a little too adventurous, however, I was stubborn. High school was very difficult, constant crisis through puberty finally showed me that maybe a life in the skies wasn’t to be, even so I was determined to be as close to planes as possible, even if I couldn’t make it as a pilot. Only as an adult can I really comprehend why my parents tried so hard to sway me from the pursuit of anything related to that career.
What do you do? What kind of experience and schooling does one need to get your job?
I am an author/publisher and motivational speaker. Whatever language you may express yourself in, excellent communication skills are a must. Media Studies was the path I followed in college, after which I studied various aspects of computing, from technical support to networking, data communications and web design. This route laid a strong foundation for me, but at that stage, becoming a writer was the furthest thing from my mind. By this time I had set my sights on becoming an IT trainer, and did so on and off (health dictating) for seven years. In between, I taught on alternative health and metaphysics and mentored young adults. All of these things helped to align me for a future in writing and professional speaking.
Wow, that’s quite a resume. It seems like you developed your foundation first, and then the success followed thereafter. This is a lesson that all sickle cell warriors can learn from. Describe a typical day on your job.
Wow, it can vary so much. Some days I might wake up at 5am inspired by the need to write and continue straight through until after 9pm at night. Sometimes it might be the other way around, start at 9pm, working through ’til 3am. It all depends on my vibe (and my health). Other days I may be focused on publishing side of things and all that entails, so I might spend the day either editing or creating a book trailer or pursuing any other avenue that could improve or bring focus to my books. In regards to speaking, I may be writing or practising the delivery of a workshop/seminar.
That is such an intense schedule. I know sickle cell warriors are chronic insomniacs, and I myself realize that I think better in the wee hours of the morning when the world is asleep. How were you able to cope with school and sickle cell?
With great difficulty! I often felt like I was forever playing catch up for how frequently I had to take time off. High school for me was a nightmare, college too. Due to my health I began to detest educational institutions, because I felt as if after a time, teachers merely humoured me and didn’t take me seriously. In truth I feared that having sickle cell gave me little reason to take myself seriously and felt like I was just wasting everybody’s time. It depressed me that while my friends were planning for their futures, I was struggling to feign wellness and rise above medical predictions of not living past the age of 18. I later found that part-time study worked best for me. Instead of going to university I started taking a series of intense 3 month courses in various aspects of computing, and supplemented my learning by filling in the gaps with self study at home. This worked better for me, as I could usually complete each course without ever falling behind.
I can relate with your ‘struggling to feign wellness’ paradigm, and I’m sure a lot of our readers can too. Very few people understand that challenges that sickle cell warriors face on a daily basis. We do have to get innovative to achieve our goals with school, work and life. How do you manage SCD and still maintain a thriving career?
As much as I never saw myself becoming an author, it has been the best thing that could have ever happened to me; allegedly I have become the UK’s first black female science fiction author. Even when I am in hospital I can take my net-book so that when the pain is more or less under control, I can still work. I don’t have to abide by your average 9-5, and times where I have a long running crisis, I can at least work in a provisional capacity, even if all I can do is talk into my Dictaphone ideas for plots, promotion or topics to speak about. If push comes to shove, I whip out my camera and do a video for YouTube. Staying busy and not feeling so useless when my body flips out, is as essential to me as keeping well hydrated. A culmination of all of these things have contributed to my success over all, but ultimately the best thing one can do to manage their sickle cell is to listen to your body, learn how it communicates that you are possibly heading toward having a crisis. Diet is paramount, minimizing my intake of wheats and sweets and drinking plenty has increased my quality of life overall.
Have you noticed a difference in how your co-workers treat you once they know you have SCD?
Now that I work for myself, I no longer have to deal with the issue of co-workers, but for the most part, the ones I have had in the past have been very compassionate and supportive. However at one of my first jobs, several co-workers were awful, accusing me of lying about having a legitimate reason for taking time off. In the end the snide comments and hushed whispers got so bad, I resigned. The stress of it all was adding to the frequency of my crises and it just wasn’t worth it.
Hooray to working for yourself and being your own boss! What advice would you give to someone wanting to join your profession that has sickle cell?
I would whole-heartedly say go for it! In terms of flexibility around one’s health, it’s perfect, but bear in mind that it may take a couple of years to break even and/or make a profit. If you want to do well, research and then research some more! Know that writing a book is actually the easy part, marketing and selling is where the real work comes into play. You have to be very self-motivated, extremely imaginative and highly dedicated to becoming a success and not just a one hit wonder. Truth be told, it is only upon writing my second book that I feel I have earned the right to consider myself an author at all.
The same rings true in almost every career. Dedication, determination and motivation are the keys to success. You have achieved so much with your books, motivational speaking, radio show and your publishing company. Has sickle cell limited any areas of your life?
Yes and no. Where there have been limits, new opportunities have been created, but often it takes for me to stop regarding a perceived blockage or limitation as being the be all and end all. It is then that I can see beyond the box and devise a method for working my way out of it. The journey has been enlightening and overall a blessing.
How has sickle cell affected your relationships?
Although I was told consistently throughout my adolescent to adult years that it would be highly unlikely that I could have children, I do now have a son and a daughter. Both are healthy, I made sure that my partner was clear of SCD or the trait from our first date. When I did get pregnant I was shocked. A couple weeks into the pregnancy, I was admitted to hospital with severe crisis and a female doctor pulled the curtains around my bed to coax me into opting for an abortion.
What? That is so crazy! She didn’t even know you from jump street and she was trying to get you to have an abortion? Whoa! So how is it raising kids and worrying about being sick?
Being a single mother is very difficult when in a crisis. I’m constantly trying to hide it from my children because it upsets them to see me in so much pain. When it gets so bad I need to go to hospital, they cry. Through my own tears I tell them I’m gonna be okay, but nothing hurts more than seeing the sadness in their eyes when I tell them I need to call the ambulance. However, now that they are a little older they have become proactive with regard to my health. I cannot eat chicken or eggs as my body cannot digest it well, giving rise to crisis over time if I force the issue. My son stopped eating chicken for over a year as he didn’t want me to feel alone in my dietary restrictions. He insists that if I find myself in a crisis over night, I must wake him so that he can help or at least comfort me. Of course I don’t, but the thought is very touching. My children will often ask me questions like, “have you eaten today, did you drink plenty of water?” They bring up cups of water to my room to remind me to stay hydrated. It’s quite comical at times for how we all fuss over each other, but then we are very close like that.
Awww, your kids are so cute! So what has been your experiences dating with sickle cell and children?
As a mother I had no desire to involve myself with any man while my children were still so young, but now they are a little older, ages 10 and 12, I have entertained relationship opportunities that have arised. However I found I had become very conscious of the fact that I had 2 children and sickle cell. If I had ever had a low esteem before due to my health, it became magnified now. Aside from my health and children I had always been very confident with men, so it didn’t take long for me to kick the habit of regarding those to be reasons a man wouldn’t want me. To be honest in the current climate of black men and women and relationships, those insecurities don’t even get a chance to be played on period.
For how confident I am in regards to my sexuality, and how focused I am with my career, it takes most people by surprise to know I have sickle cell and suffer greatly from the pain it brings. If anything I have been told by some that I can be intimidating due to having a way with words as well the way I carry myself with head held high. Others find it confusing how I can look and speak one way, but get down right silly and do a ‘food dance’ when in the queue at my local hangout.
Overall I think the balance is found in knowing thyself. As a man thinketh, is very apt when in regard to someone with sickle cell pursuing a relationship, as I believe many of us subconsciously fear our health to be a limiting aspect. Sure we have our moments, but I’ve yet to have a man look me over in favour of a woman who doesn’t have sickle cell. After all, she too has her own limiting features and insecurities, some being far more severe than the fact that my body flips out on me every so often.
That is so true Tosin! I think therefore I am. When you do reach obstacles in your life, what helps you through it?
Stepping back and taking a look at the bigger picture. Life may not have gone according to my plans, but in the here and now I am happy and thus successful. Many of us chase happiness all our lives and take too long to discover that peace of mind is truly all we are looking for; and that is found in acceptance of self. That means accepting the bad as well as the good and keeping it all in perspective. I have suffered hours, days, and months of painful crisis. On a few occasions I have almost lost my life to sickle cell, the first time being when at the age of 17 I had a stroke, but I look at it like this: I am currently 35 years old and though when in the midst of a painful crisis it can feel like forever, it’s usually a matter of hours or days. If I tally up all my crisis back to back towards the aim of arriving at a sum total of time spent in pain, I’d say I have been living with sickle cell not for 35 years, but say 2-3 years, 5 at the most. I choose not to mourn the loss of those years, and instead celebrate the 30-32 I have had pain free. It might make little sense to others, but it works for me to consider that each painful episode is a drop in the ocean of time and that overall I’ve had a regular life that either sucks or rocks just as much as anyone else! Better yet, a couple of months or years down the line of overcoming an obstacle, I can usually find my blessing in it somehow, even if at the time it felt like my world was falling apart. Change, pain and uncertainty are a given, but a true warrior sees their battle scars as testimony of having won more wars than they have lost, because they are still present and thus gifted/blessed to live another day.
That is a refreshing way of looking at things. It really does put life into perspective. Instead of pitying yourself and looking back over the time you have missed, when you tally it up, you see the larger half that you have enjoyed. I will have to say the same. I’ve probably been sick for 4 years and healthy for 25 years. That is a huge blessing. Moving on, do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
Currently my encounters with pain are approximately once, maybe twice a fortnight, but at the beginning of this year I was bedridden for a straight 3 months. Having a notebook and a lap-table is how I coped. At times though, I was in so much pain I couldn’t so much as bear to rest my notebook on my lap, let alone type. It was a horrendous time, but my blessing as always, was my imagination and my friends and family. I worked in short bursts during the times the pain relief kicked in, and used the phone and Internet for everything from my weekly grocery shopping, to my staying in touch with friends, family and work associates. My bedroom became my office with my bed as the desk. From it I conducted my radio show, wrote my book, blogs, and even filmed YouTube videos. By doing things in bursts, then putting them out in a timed-release fashion, I literally created the illusion that I was working daily and consistently even though most of the time my body felt like it was being torn inside out and I was barely working one day a week.
What medications do you take when you are in pain?
Oxynorm (Oxy-morphone), Diclofenac (like Ibuprofen) and paracetamol (Tylenol). I’ve come to learn that it is essential to reduce the possibility of constipation (side effect of my medication) as it will keep me in pain long after the initial crisis should have eased. I now make sure that as soon as I pop an Oxynorm (morphine based) I also take two Senna tablets and one Cyclizine (Dramamine) (anti-sickness) and drink as much as possible. I believe water to be my most essential medication.
What is your daily medication regimen?
Folic acid, Mariandina A,B and J, water, water water!
One cannot stress the importance of water! My mom used to tell me that all the time, but it wasn’t until my college years that I learned to appreciate hydration. Many a crises has been warded off by extra water! Looking at the 14 year old version of yourself, what would you tell her if you could…?
No matter how much people told me to drink water, back then I seemed to have an aversion for it. I would explain to 14 year old self exactly why it is so important, and to be sure to start and finish the day with a warm glass of it. I would also smile and tell her that my being able to talk to her this way is proof that the doctors were wrong; we have a wonderful life ahead of us.
Is there anything else that you would want to tell other sickle cell warriors?
Know that you are blessed, because no matter how hopeless times can get, where there is a will, a way will always be created. Don’t ever give up or resign yourself to believing other people’s perception of what life should mean for you. There are a great many people out there who don’t have sickle cell, but are in living in fear of rising to their own potential and so they never do. I may have never become a pilot, but I am mentally soaring the skies because I know the limitations of my body are not a determination of my capacity for productivity and success. Redefine what success means to you, and start small in your efforts toward achieving it. It may be something as simple as increasing your intake of water and thus reducing the likelihood of crisis! Better to take pigeon steps and walk a mile a year, than to sit around complaining and getting nowhere for it.
For further contact, you can visit Tosin’s website at http://www.n9neformation.com/. Check out her books on Amazon HERE. Thank you for doing this interview Tosin Coker. You are amazing, and simply inspirational. I wish you good health and much success in all your future endeavors!