My name is Julia Aruya, I am now 37 years old. I was born in Lagos, Nigeria. Out of 4 children, I was the only one with Sickle Cell Disease. It’s strange…people ask me all the time how I feel to be the only child with this terrible disease in my family and If I ever feel sorry for myself for being the one who “got it”. I always say NO. How can you wish this type of terrible painful life on someone else?
At a very young age, my parents were encouraged by others to let me die because I was not a perfect child, a bad apple you might say…but, my father left his job and stayed home to take care of me for about 2 years, then my mother did the same for another 2 years. Each summer, I was sent me to the United States for treatment and rest while my senior brother took great care of me. I was one of the lucky ones.
One of the things that my parents could not emphasize enough was a good college education. Education brings knowledge, and knowledge in turn is power. I had to empower myself for a difficult life’s journey and with a great career, I was ready to take on the world. Unfortunately, the world it seemed was not ready for an imperfect employee like me.
After graduating from college, I was fortunate enough to work for a major fashion retailer at their Dallas corporate office. Due to my illness and the pain crisis, I was absent from work from 30-90 days in a year. This was extensive. Promotion was out of the question. I worked hard, was able to anticipate the need for my job and worked ahead of schedule so as to avoid any extra workload for co-workers in case of my absence but, corporate policy is not something you can work around. If you are not at work 24-7, with minimal absence, you are not promotable.
After several years, I stopped hoping for a promotion with this company and opted to change my career. I decided to put my knowledge from this company to good use, I started a small home based business to be able to supplement my income until I was able to secure a better position.
While successfully running my home based business, which generated more success than I had anticipated, an ex-co-worker spoke to a fashion manufacturer about me. He was extremely impressed with my qualifications and offered me a position in his company. Though this was a multi-million dollar company, with divisions all over the world, they lacked tolerance for someone with a Sickle Cell disability. After a year of mental anguish, I decided to find another position. I could not find myself working with such intolerance and ignorance again. Luckily for me, I secured another position in a higher learning institution..
I have several episodes of pain crisis. But, I don’t let that stop me from anything. In a way, it’s mind over matter. You condition your mind and let God rule through your body. It’s that simple. Sometimes, my pain gets the better of me, but my strong spirit enables me to come through each crisis a stronger and better person. If you look hard enough, you learn to know your strength, your weaknesses and what makes your body give into the pain.
I have one child, Catherina. She also has sickle cell. With her, I find myself fighting another battle. This time, it’s with the school system. Her teacher actually said to me the other day “Catherina is such a smart child. If only she could stop lying about her stomach and back hurting all the time and concentrate on learning. She will be better off if she could…we all know sickle cell is not life threatening. She is always in pain, always sick, always going to the nurse and this is disruptive to the class…” I went home and cried. I realized what lies ahead for my daughter…like me, she will have to fight so many battles.
I want to encourage everyone with Sickle Cell to take a good look in the mirror. We are ALL God’s children. Let NO ONE make you feel like you are less of anything. Go to school, get an education, learn all you can, practice on your knowledge, put it to good use and most important…make sure you get a good enough education so you can have a career, not a job.
With my disease I am still working on getting my Masters. I run a successful business and also have a full time job. Here I am. Still, when in crisis, I cannot stop crying, not from the pain, but for myself. Life is so precious and every minute counts so much if only I did not have to waste it in the hospital.
My daughter’s favorite thing is Ice Skating. She also loves horseback riding and swimming. The sky is the limit, no limitations at all. I encourage her to do and be all she can be. She wants to be a medical doctor who finds a cure for sickle-cell. I pray she does..She is such a wonder. She was the Sickle Cell poster child in Dallas for the year 2000. I am attaching her picture.
We as people must let the world know about this disease. I’ve been asked…”what does your pain feel like”? I find myself at a loss for words…how do you put words on something so painful? We must educate the corporate world on this disease. We must take it to the highest level. In my lifetime, one of us will speak to congress about what we
live with each day. I’ve seen people speak about almost every disease, except of course, Sickle Cell. They are not big enough to endure what we endure. If you are not careful.., you can easily live on the verge of poverty and why? because you have a disease?
Thanks so much for your time.
Julia O. Aruya
DeVry Institute of Technology