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Meet Nick: Student, Husband, SC Warrior

For the second Warriors in the Spotlight interview, I have the pleasure of introducing everyone to Nick. He’s a computer software programmer living on the East Coast. Without further ado, let’s just dive into the interview…How old where you when you found out you had sickle cell?

I actually have sickle thalassemia. Oddly enough, I don’t remember the age. I had my spleen removed five days after my fifth birthday – Happy birthday to me, lol. I would say I didn’t realize I had SC until eight years old.

Yeah, that sounds like a typical SC birthday! I’m sure many of us can relate to spending our most memorable (and I say this with a hint of snark), birthdays in the hospital;) So, how did your childhood and your parents influence you in your choice of career?

The career that I felt chose me was to become an application developer. I spent a lot of time in the house for obvious reasons when I was younger, which meant I was bored 90% of the time. I found that I loved playing video games. It was my personal getaway from what I felt was an absent childhood. I was able to have friends come over and completely dominate them in any game of their choosing.

My parents were on different spectrums when it came to child development. My father was the long belt hand of the law. My mother was my shield from the long hand of the law. Guess who was my favorite? They never let me shy away from any adversity, which definitely put me on the right path. My father knew my best asset was my brain. He never stated this, but I believe he knew I didn’t have a chance at a career that was more physical than mental. He emphasized critical thinking at an early age. So now, instead of catching touchdowns, I’m catching exceptions. (Sorry, nerd joke.)

Hahaha…completely dominating your friends in video games? I wish I could relate to that. I totally suck at video games; the eye-hand coordination thing has never been my forte. Moving right along, do you have regular pain (more than 2x a week)? How do you cope with this when you are working?

Yes, I usually have pain more than twice a week. I have a pretty high tolerance to pain medication, so I usually take half a pain pill, which dulls the pain enough to get me through the day.

What medications do you take when you are in pain?

The pain medications I take are Vicodin, Percocet, Dilaudid and Oxycontin, although I rarely use Oxycontin due to its high addiction rate in users.

Sounds like a sickle cell warrior’s medicine cabinet all right. Let’s focus on your career; what exactly do you do and what kind of experience and schooling does one need to get your job?

My job consists of interacting with end users to create software application. Granted, that’s a very high level due to the fact that most people would find what I do pretty dull. However, everyone utilizes programs everyday; like Microsoft Word, Facebook, etc.

It’s much easier to become an application developer with a B.S. in information technology, computer science, computer engineering or mathematics. However, I’ve met men and women who don’t have degrees but are very good at their jobs. I think of the IT industry as similar to giving directions to the mall: there are so many ways to reach the destination. There’s the ‘easy’ but pricier way, which is college, or there’s the self-taught way, which makes it more difficult to prove your worth.

Okay, I think I understood some of thatJ. You work on the back end of software, the part that the average person could not even comprehend. I can see how it would be quite useful to the technology junkies that our generation has become. Describe a typical day on your job.

A typical day consists of reading a log history of what was accomplished on the previous day. This helps me identify the tasks I need to complete for the day. The rest of the day involves writing, testing and debugging the code. Sounds like fun, huh?

Oh yeah it sounds like something absolutely scintillating…NOT! I will admit that I know how addictive coding can be though, because working on this website has become my second job. There is a huge sense of accomplishment found in fulfilling the tasks that you set up for the day. Here’s something inquiring minds want to know: how were you able to cope with school and sickle cell?

When it came to school and sickle cell, SC usually won. It took me about four years to finish my A.S. in computer science. I usually ended up catching a cold or virus, which sent me into a tailspin and caused me to drop out for a semester. I was able to dust myself off and re-enroll in school. I’m now one semester shy of getting my bachelor’s. Granted, it took me about a decade but the important thing is that I finished. I wish I could say I did it all myself, but my wife definitely motivated me.

Wow Nick, congratulations on having 1 more semester to go!  I know your wife must be so proud!! Your tenacity and determination are to be applauded, since I know many people in your predicament that would have just given up. You kept your eye on the finish line, and now you are almost there!  How do you manage SCD and still maintain a thriving career?

The most difficult aspect for me is understanding that  I have a limit. I’m prone to push the envelope physically, which unfortunately, I just can’t do. Everyone has a limit but a person with SC has to be more careful not to physically push themselves to the maximum. I maintain my career by connecting with others in my field via blogs and community forums.

I think so many of us struggle with that. I’m usually so glad that I’m ‘not sick’ that I overdo it when I’m well, and end up kicking myself mentally after the fact. But moderation and temperance are things we must all learn.  Have you noticed a difference in how your coworkers treat you once they know you have SCD?

I wish I could say I haven’t noticed a difference when coworkers learn I have SC. I’ve seen both positive and negative responses. When I inform a coworker, I usually tell them I have sickle cell disorder – if I tell them I have a ‘disease,’ I usually receive a negative response, as if it is somehow contagious. However, some coworkers research the illness and then give me a dissertation on the cause and effect.

That’s such great advice about the distinction between disease and disorder. I never considered that, but seeing the impact that words make; I can see how that would affect the mindset of your coworkers.  What advice would you give to someone wanting to join your profession that has sickle cell?

The best advice I would give an individual who wants to join my profession is that a computer doesn’t care what illness or handicap may have. All the computer understands is ones and zeros. Everyone is on the same playing field. As with anything in life, practice makes perfect.

Yep…practice makes perfect! I think this has been the lesson of the week for me.  Has sickle cell limited any areas of your life?

One area of my life that’s been limited that isn’t discussed as much is the psychological aspect. People who understand SC know the physical toll a crisis takes on an individual, but it’s more difficult to heal the psyche. I find it difficult to open up emotionally to anyone. Once hospital visiting hours have ended and they turn off those incoming phone calls, it gets really lonely in that room.

I know…you can only sleep and watch so much TV. Thank goodness hospitals have WiFi now, so I can still stay connected.  I think that feeding the psyche is essential to one’s personal growth. There are so many avenues of connecting now, and I hope that other sickle cell warriors will take advantage of that. When you do reach obstacles in your life, what helps you through it?

One thing that helps me through is knowing that my illness hasn’t defeated me. A person with SC knows that life can push you to the breaking point, but the beauty is knowing that you’ve been down a rough path before and still succeeded.

Amen!  That is so true!  Looking at the 14 year old version of yourself, what would you tell him if you could…?

I would tell my 14-year-old self not to be fearful of being different. That’s one of the beautiful things about being alive. Everyone has a flaw. It just so happens that your flaw is a bit more noticeable. Also, love like you’ve never been hurt.

Awwww, that’s so great!  I hope other teens reading this will hearken to your advice. Thank you so much for doing this interview. Is there anything else that you would want to tell other sickle cell warriors?

I would like to tell all the other SC warriors that a proper diet and rest works wonders. The best thing I ever did for my health was to cut out most of the processed food. As much as we would like to show the world we’re not different, the truth is that we are, and the majority of food is not for us. God knows I miss McDonald’s French fries, but I feel SO much better not eating them.

The second thing I’d say is to remember you’re not alone. Thanks to individuals like Tosin, we have a voice. Our thoughts and feelings don’t fall on deaf ears. Don’t let SC dictate all the facets of your life.

I truly believe SC saved my life. A lot of my old friends are dead or in jail. If I was ‘normal,’ I might have followed them right over the cliff.

Live free.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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1 Comment

  1. Chelsea
    Chelsea December 02, 18:45

    My son was born with Sickle Cell beta + thalassemia which has made me curious to know what kind of sickle cell thalassemia Nick has. My son has been generally healthy with the exception of minor bone pain twice now. I guess I was wanting to know if they had the same kind so I could know if there is a possibility of it getting more severe like Nicks. Thanks!

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