Meet Tosin Ola-Weissmann, RN/BSN, the Warrior Who Coined The Term That Replaced the obnoxious word, SICKLER.
- Parents told she would not live past childhood, now approaching 40!
- School principal asked parents to stop wasting money on her education, now she is a Registered Nurse, Bachelor of Nursing and set to earn two postgraduate degrees!
- Her relationships never lasted beyond six months – as soon as suitors see her in crises, they flee! Now, her marriage has passed the 9-year land mark.
- Ex-boyfriend said she would never find a man to marry, now married to flesh of her flesh!
- Said to be ‘too high-risk’ for bearing children, now proud mom of twins!
- SCD was a closely-guarded family secret for years, now she shouts SCD from the rooftops!
WHY I CHOOSE TO CELEBRATE HAVING SICKLE CELL
I choose to celebrate the fact that I’m alive. My parents were told when I was 4 that I would not live past childhood – I’m 38 now. I celebrate because I beat those odds over and over again. In fact, I have outlived the doctor who proclaimed it. I eat cake for the birthdays that I had no cake to eat because I was admitted in the hospital, dealing with excruciating pain. There was a party happening alright, but it was inside my body, a thousand trolls smashing my bones and joints with hammers and pickaxes over and over again. Every beat of my heart caused pain. A painful sickle cell crisis can strike at any time with no warning, can last a few hours, days, weeks, even months.
My boarding school principal told my parents to take me home and stop wasting money on my education. He said I could never amount to anything academically due to my frequent absences related to SCD pain episodes; I celebrate because I graduated high school and won 8 awards, completed my RN program with Honors, and my Bachelors degree in Nursing as a Magna cum Laude. Come June 2020, I will graduate with 2 post-graduate degrees.
I choose to celebrate my independence, autonomy, and industry. I make my own money, pay my own bills, and have been so doing since I became an adult. I am a registered nurse, and have held my license unblemished for 18 years, working in so many areas – the ICU, ED, telemetry, PCU StepDown, surgical, oncology, PACU, travel nurse; I even worked as a school nurse. I’ve forged my career pathway, and in spite of my frequent hospitalizations, I excelled at my job, held many leadership roles, and was nominated the Nurse of the Year in 2011. Last year, I was invited to give the graduation speech at my alma mater, Oakwood University, in the same auditorium where I graduated as a nurse. So surreal and indescribable that moment was!
I have my own business, with the best boss ever (myself!), and can pace myself as my body feels. I would not have had the courage to start my own empire without sickle cell giving me that inner strength and willpower. Once you’ve beaten death, you can beat anything.
Failed Relationships, Blessed Marriage
Because of sickle cell, I felt I was destined to be alone and single forever. A crisis is so horrible to witness that all suitors fled shortly afterwards. The longest relationship I had was 6 months. An ex said no man will ever marry me; another chose my birthday to marry someone else. Although betrothed, he was persuaded to marry another because his family felt I could not give him children.
I celebrate because, thanks to SCD, I didn’t waste time, heart, or shed too many tears on these fools – they fell out early before they could steal my years and my heart. I celebrate that because of SCD, I found my perfect match, bone of my bone, flesh of my flesh. I choose to celebrate the amazing 14 year relationship, blessed 9 year marriage to my darling husband, love of my life, best friend, soul mate who loves me so much, and embraces my culture, country, and family as if it was his own. Our love story is better than a fairytale, because it happens every single day. Orion gets me, he was custom built for me and I for him. Even our quirks and foibles align to become strengths like yin to yang. We make each other better individuals. I’m grateful he’s my life partner. He adores me, I’m a lucky spoiled wife, treated like a princess, with my own household staff so as not to overexert myself. I choose to celebrate my blessed life.
I was told after two miscarriages that I should just give up, that I could not carry to term. I had an OBGYN remove me as her patient, saying I was too high risk to have children. I choose to celebrate because I had a smooth and easy delivery, labor felt like mild cramps compared to the pain of sickle cell. I was at home in ‘labor’ for 12 hours just chilling, thinking I was waiting for the real labor to begin.
I celebrate that I have my amazing miracle twin boys – perfection personified, angelic, loving souls, my gifts from God, who are 4.5 years old, who make me laugh every day and bring tremendous joy to my life.
I celebrate because each day that I open my eyes, I am beating the odds. According to the CDC, outside of accidents, a typical American dies by natural causes at 77-85 but my lifespan with SCD is 42-45. I’ve met older folks with SCD but they are the exception, not the norm. I’m planning major celebrations for my 40th and 80th birthday parties and God willing, I will be at both. I celebrate each hospital admission that I came home from because not every warrior comes home.
At 38, I’m an old in sickle cell years. In childhood, I had 2 ischemic strokes, several heart anomalies, a section of my lungs suffered necrosis due to acute chest syndrome. My grandma’s teeth are better than mine! I have a walker, I use a cane indoors. I have Stage 3 avascular necrosis in both hips and will require 2 hip replacements once they break. Through it all, I have so much to be thankful for.
I have faced death numerous times and lived to tell the tale. I celebrate each scar on my body as a victory won. I celebrate that I know God. I have felt His presence in my life over and over again. I am closer to Him because in my deepest, most terrifying moments, my body wracked with unimaginable pain, my sickle red blood cells clotting and clumping, my circulation sluggish, my tissues ischemic and dying, feeling like 1,000 men stabbing me with knives, I cried out and He delivered me. Every single time I should have died, even last October, I miraculously recover.
I celebrate because I can.
With a chronic medical condition like Sickle Cell Disease you have 3 choices:
- stay a victim and have a never-ending pity party
- stay in your bed, wait to die OR
- choose to be a warrior, living your very best life.
There are days where I’m in agonizing pain and I can’t get up. This last month (May 2019), I was in severe pain 25 days out of 30. I choose to celebrate that in the midst of my pain, I found strength I never knew I had.
For many families, dealing with a chronic illness like SCD is hard. On top of the financial impact, I’ve heard horror stories of those who abandon or neglect their sick kids. Some warriors are merely tolerated, their meds withheld, treated like a burden, constantly disrespected, abused and insulted, even at home. A sickle cell warrior mentee of mine in New York has to take the metro bus to the ED every time she is in crisis after 3:30pm because her dad does not want to lose his parking spot! She can’t take the train since climbing up and down stairs is too painful when she is in crisis, so she takes the bus for over an hour to get to the hospital. In severe pain. Alone.
Loving Family, Friends
I choose to celebrate my amazing family who have carried and cared for my broken body since day 1. I celebrate my parents, whose love brought me here. They prayed for 5 years to have a child, and they got me. Back then, there was 100% ignorance of the implications of sickle cell trait in West Africa. My parents turned their guilt into goodness, they instilled in me all my core values. I celebrate my parents, Pastor (Dr.) Joseph & (Dr.) Mrs Janet Ola, whose knees are hard as rock for the times they have prayed for me, for the tears they have cried for and with me, for holding me and our family together all these years through all the trials. When I’m in crisis, my dad is in the fire with me. He can’t eat, sleep, or relax until he knows I’m doing better. He holds a spiritual vigil, fasting and praying for weeks at a time. My mom intuitively knows when I’m in crisis or in the dark place even though half of the year, she is on the other side of the world. She is the one who always helps me find my fight and passion for advocacy when I get burnt out or disillusioned. She is my compass, my lodestone, and my angel.
I choose to celebrate my siblings; they are my back (Jojo), my rock, Mrs. Busayo Ola Ajayi, my brain (Dr. Kemi Ola Mudzengi), and the wind beneath my wings (Sanya). I raise a glass to my sibs, whose lives have been constantly interrupted by my countless medical emergencies, yet all are successful in their chosen careers, thriving in leadership roles, pulling 6-figures, each with a Masters degree, and one with a PhD! My darling younger sisters who flies cross country just to be there when I’m in the hospital, who becomes my voice when I’m voiceless, giving me power when I am weak and vulnerable. Each one knows my medical history better than I do at times. Each has saved my life more than once by preventing medical harm due to human error, recalling an obscure fact, acting as my advocate and helping to get my pain under control. Each has spent countless hours in the hospital, sitting on those hard chairs just to be with me, letting everyone know I’m a nurse, keeping the staff in check, cracking jokes and telling stories to distract me from the pain. Although they spoil me unconditionally when I’m down, they fluidly still give me respect, and let me switch back to their big sister when I’m well, strong and ready.
Without my family and friends, I would be nothing.
My parents were told by many of their closest friends that we should keep my sickle cell a secret in order to protect my younger sisters’ marriage potential. Beyond close family, I never talked about my SCD growing up. It was a family skeleton we ignored as much as we could until the next crisis hit. For me, it was a heavy burden to bear because I was the only one with it in my family.
In 2005, I was desperate, hospitalized and isolated. I needed to talk to someone…. I searched online for someone else with sickle cell, and back then, there was very little. There were no sickle cell blogs, no Youtubers, no apps, no social media, no Facebook groups … there was nothing.
Sickle Cell Warriors Movement Is Born
I choose to celebrate the seed that ignited a movement. The seed was planted on that lonely night in hospital when I did a search online looking for anyone talking about SCD, found no one, and became the person I was looking for. That same night, Sickle Cell Warriors, Inc., was born. I celebrate because I built a community where none existed before. My first blog post was a declaration of defiance, but as I shared my struggles with SCD, an incredible paradigm shift occurred. I shared my story, and you related. Another person commented, and another person liked. Then you shared your story. Thus, a community was born, my very own global village bonded by blood. I celebrate the fact that I am no longer alone, I found my tribe, an amazing community of warriors who understand and get my struggles. SCW is the #1 SCD patient-focused support page on Facebook, the only moderated group and the only group with internal Community Guidelines to protect our members and maintain quality. Even with the rules, we have the highest viewership (27,000+) and such a positive and empowering community. We busted open the door and now there are over 200 groups and pages dedicated to sickle cell disease.
‘Don’t Call Me A Sickler’
I realized quite early that words have power, words matter, and I stopped referring to myself as a sickler. To some, it’s just a word, but to me, it was a label I did not want attached to me.
I had heard the nurse outside my room say to the aide, ‘Tell the sickler I will bring her pain meds in 15 minutes.’
It was the way he said it…you know the way. Instantly, it triggered me, first to tears, then to anger. I called my best friend. I could barely explain why I was so upset by the S-word. She suggested I do something about it. I asked the RN for paper and a Sharpie right before his break.
When he got back 30 minutes later, I had made 2 signs; one for my door, and one right above my bed. I had also written the blog post, ‘Don’t Call Me A Sickler’ with my reasons why.
I started signing off my blog as the Sickle Cell Warrior. Unbeknownst to me, I had ignited a global movement in that moment. Google it. Tosin Ola was the first person to use the term sickle cell warrior in reference to SCD patients in any print or electronic media.
You may not have heard of me, but if you’re affected by sickle cell, you’ve probably heard the term, and used it. The term is now ingrained in our collective consciousness. I touched your life.
Doctors, nurses, Warriors, family members, sponsors, scientists, legislators, researchers, even the Rear Admiral of the NIH used it right in front of me!!! Now everyone across the world uses that term. Every time I hear that phrase, I know that I accomplished part of my destiny.
I choose to celebrate never having to ponder what my life mission was, because it was long imprinted in my DNA.
New Treatment Horizons
For the first time in over 100 years, things are lining up in our favor. We have several new laws being passed for SCD on the federal and state level, legislation pushed through against insurmountable odds. Donald Trump is in our corner! There is so much research on the horizon, and over twenty-five stage 2 and 3 clinical drugs in development for SCD!
We have 3 companies doing genetic editing research, a greater push from the federal government to cure SCD, the ASH Clinical Trials Network, the SCD Coalition, NIHs Cure SCD in 5 years objective, GBTs Access to Care Meeting and SCDTC…I could go on and on, the list is impressive and impactful. Even the FDA is fast-tracking treatments for us. I celebrate because I know that in my lifetime, quite soon, we will have so many meds to choose from for each of our symptoms. I choose to celebrate because there are so many scientific breakthroughs happening almost quarterly now in SCD research. I know we will have much more to celebrate in the coming years.
I know that in my lifetime, we will have so many meds to choose from for each of our symptoms.
I choose to celebrate because there are so many scientific breakthroughs happening regularly now in SCD research. I know I will have much more to celebrate in the coming years.
By Tosin Ola, RN/BSN, Founder, President/CEO, Sickle Cell Warriors Inc. www.SickleCellWarriors.com
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