Written by Sickle Cell Warrior on 25 October 2013
Hey everyone, this week’s warrior is James B (another James:), and he is in the middle of a 6-month long crisis. And yet, he still finds the courage to fall in love, stay strong, and share his life with the world. Let’s get started, James. How old where you when you found out you had sickle-cell (SC)?
I found out I had Sickle Cell Anemia very early in life as a young child. My parents told me the doctors checked for sickle cell at around 9 months because their firstborn, my older sister, was determined to have the disease. My mother thinks she first told me at the age of 6 maybe 7. Because I knew I had Sickle Cell as a child I had to learn to cope with it as early as Pre-school and kindergarten. I also couldn’t go outside with the other kids to recess if the weather was less than 45 degrees. So I was allowed one friend to stay inside with me. Most of these amenities went on till I was in high school. The amenities in high school were extra bathroom breaks and water breaks. I could not participate in swimming during Physical Education as the pool water was not heated.
During my years in school I had two major crises that kept me out of education for a long time. The first time was in 1998 right before the bad winter. I was in the fourth grade. I got sick and was admitted to the hospital with fever and pneumonia in my chest. I stayed in the hospital for three weeks.
My mother was a minster who worked internationally. At the time she was in Africa doing work there. My father and sister visited me every morning before school and work. It was near Christmas time and the only way I could deal with my pain was to participate in the various hospital activities. Yet I was sad because I thought that I might be spending Christmas there away from my family. There were two big things that cheered me up when I was in the hospital. 1) My mother calling from Africa to check on me and 2) my friends at Loving Care, my after school care program, made cards for me.
When I got out the hospital I had to wear a heart monitor. They discovered that I also had an enlarged heart with an irregular heartbeat. During those times my teacher would let me sleep during recess because I couldn’t keep up with everyone else. Even my teacher was looking out for me, that is, she was kind enough to let me sleep until I woke up on my own. Because of this I had gained new respect for her.
How did your childhood and your parents influence you in your choice of career?
My mother has her doctorate and serves as a pastor and my dad has his master’s in electrical engineering. Education has always been a big thing in our family. My only issue is that I am a huge people person and sickle cell has always been in conflict with the jobs and careers I wanted to pursue.
When I first got to college my major was culinary arts. I had a job working at Primo’s catering which I thoroughly enjoyed. I worked every chance that I could. The problem with culinary arts was the hours were extreme and very harsh on the body. I also had to deal with fluctuating temperatures because I had to go in and out of a freezing Ice box. The next major I was interested in was nursing. Which I never really did get into it because the program chair said they would not give me any breaks if I missed the nursing clinics because of my illness and would probably fail because of absences. Also my doctor said the hours in the hospital and encountering all sorts of disease would put my immune system at risk. The last major I pursued was Elementary Education. I haven’t had an issue with this so far. The only thing that has stopped me from finishing my major in Elementary Education has been my health. Every school year I get sick and the last year I have had a year-long crises. Since I haven’t been able to complete school I have been home contemplating on life and what to do.
What do you do? What kind of experience and schooling does one need to get your job?
Before I was sick I worked at the Indiana Convention Center in downtown Indianapolis. I was a computer system worker. I worked inside all the conventions helping people get to the right place, making sure they are not lost, and at the right event. As a computer system worker I made sure people were checked in to the convention that was going on at the time. I also printed their badge information and gave them tips about the area and told some of the hot spots to eat if they were new to the town. For this job you really didn’t need any college experience. But you need some experience with a computer. The work I did for the convention center was temporally and I only worked 2 weeks out the month
My other job was a bartender/cook; this job was very fun and exciting. I got to meet different people every night. I got heard stories from veterans about the wars they had been in, and how they viewed the world. The food I made always put a smile on people’s faces. For this job you really don’t need school experience. But you do need to know how to work with people and read them, so events don’t get rough and rowdy.
Has sickle cell limited any areas of your life?
Sickle cell has affected lots of areas of my life. As a kid I loved playing sports. I could never play sports in a major competition because of the effects it has on the body. My biggest dream as a kid was to play for a school sports team and I never could. Another area sickle cell has affected my life was in dating. I always had to keep my sickle cell a secret until I could tell the person was ready for it.
Usually when I told them what goes on in my body they would up and leave. And say “you have way too much baggage I just wanted a normal relationship.” The biggest place where sickle cell has affected my life is in education. I would miss school from being sick and I would always have to work my butt to try and catch up with the other students. Because of this I got discouraged when it came to school and didn’t feel like I should do my best because I would always end up have to catch up. This has happened through my whole education career. The last area I think it has affected my life was making friends. When I was a kid I kept my Sickle Cell a secret the best I could because I wanted them to look at me as normal as anyone else. It worked for the most part. When people started knowing I was missing school because I was sick I got looked at different and that I could get them sick.
By the time I was in high school everyone knew I had Sickle Cell and I didn’t have a group of friends in my grade. I had some friends that were younger than me because they didn’t ask or care that I had sickle cell. In college I still have to keep sickle cell to myself because people get worried that if I do something I might be over doing it. So it’s not that they don’t care but they care too much and crippled me to a point.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
Sickle Cell has made it hard to find the right person. I have had people say, “Dating you is hard because you have too much baggage or that dating is rough because I don’t know if you’re going to do well in the hospital. Since you been sick a lot all have been doing worrying and I just can’t do it anymore, it’s too much stress.”
Things have changed in the last year, a good friend of mine that I had liked and had a big crush on for a while started seeing me in a different light. At the time she and I were both going through some rough times. I was dealing with a six month long sickle cell crises, YES six months! This was my longest crises ever. She was dealing with stress from a bad relationship also stress from family. I couldn’t really do much at the time to help I was sick … the pain was high enough that I couldn’t have a normal life but wasn’t high enough for the hospital to take me in. My only choice was to deal with the pain at home.
She started coming over more and more and we joked and laugh and had a blast. I didn’t think much of it then because she had told me that “once you’re my friend you stay in the friend zone”. I figured we were only hanging out just as friends goofing off.
A couple months later I am finally able to do something outside the house. We go on a couple dates, I was going to ask her out in a couple weeks but she made her move and did it herself. I said YES, it’s been an amazing roller coaster ride like all relationships they have their ups and down. Even when things get there lowest the always come up and levels off.
To be honest the more I am with her the more I have learned about myself. She has made me want to become a better person and a better boyfriend. The biggest things she has taught me is we have to be supportive of one another 100% of the time. I have learned to trust a female 100% about my sickle cell. For the longest time I did not put my full trust in her because I figured she would be like every other woman and dump me once they found out how my life can be with sickle cell. Yet she has stuck it out with me from the beginning of my latest crises.
If you aren’t single and fabulous:), please tell us about your significant other. How have they helped you with sickle cell? How did your relationship evolve taking into account your sickle cell? When did you tell her?
I have been in a Sickle Cell Crises since August of this year. The pain has been high enough not to be able to live a normal life, low enough they won’t admit me in the hospital. I am on meds 24/7 to keep the pain down.
My girlfriend is named Irene, by the start of August she knew nothing about Sickle Cell Anemia. She has gone to doctor visits with my family, she asks questions, and has learned a lot. A month to two months ago she had to go work early in the next morning but she wanted to come over and check on me the night before. I was doing well till about 11 o’clock pm that night. Then I started having major back pains, I laid down and she put a Ben-Gay patch on my back hoping it would relieve some pain. That didn’t help at all she spent the whole night with me, rubbing my back so I would feel better. When she went home the following morning, she fed her dog then went work with her hands being extremely sore. After work she stopped by to see if I was doing any better and to make sure I was on top of my meds. If that was me straight after work I would have went home and fell asleep.
Since that event, I am still having that crises and when she does stop by she makes sure I have water near me, makes sure I take my meds on time, and at times she will rub the area of my pain. She has even bought me breakfast, lunch, and dinner. She has done so much for me and has learned so much about sickle cell in three months. Most of my friends I have known for 6 or 8 years know less about sickle cell than her. My dad tells me once in a while, Irene is a special woman a true one of a kind.
I hope after this crises is over I can take her out and thank her for all the care and support she has shown to me. I truly am a lucky guy, to have such amazing, caring, thoughtful woman in my life. I hope our relationship continues to grow, who knows maybe she will be the last woman I ever date again.
Fighting For Your Rights in the Hospital