It is a privilege to introduce all of you to Samuel: our hardworking, name-taking community care counselor here at Ekisa! Sam has become such a vital part of the Ekisa team, and has come alongside of us to help and empower families who are caring for children living with disabilities. So I am going to let Sam have the floor, and he is going to share with you about his life and why he is such a perfect fit to work along side of us here at Ekisa.
Ha ha ha …….Hey every one out there, my name is Sam and I am 30 years…PHEW!
Perhaps you are surprised at how happy I am, but this happiness was born out of the sadness and fear that has lingered in my heart all my life. Not so many years ago, I sat opposite a doctor while he confidently informed me that I was not likely to reach the age of 25. He did make sure to clarify that I might live to 25, but I would certainly not live beyond 30.
Sorry Doc. I guess God just proved you wrong! I celebrated my 30 birthday in October 2012.
Lets start from the beginning. I first found out that I had sickle cell when I was around 12 years old. This does not mean that I hadn’t suffered a crisis before this diagnosis. By age 12 I had experienced hell from my own body. The daily body aches, pains, malaria, sleepless nights, uncountable tensions plagued me most of my life. To make matters worse people around me, including health workers, lacked compassion for what I was going through. These were very trying and lonely moments for me. To this day, I can’t say how many times I doubted and wondered whether I would wake up the next morning.
I remember my mom once sending me all by my self to the Sickle Cell Clinic at Uganda’s National Referral Hospital. I remember the Doctor asking me how I felt along with other typical questions. I also remember the Doctor asking me if I had any question for him. All I remember asking him was what do you call the sickness that I am suffering from? I still hear his voice whenever I think about this particular conversation. He said it was called Sickle Cell.
I want to share a bit about my family. I am second of seven children. Three of us are boys and the other four are girls. Three of us are affected and living with Sickle Cell. I am Ugandan, from the Eastern part of the country. Growing up my parents and siblings were so good with me helping me with things when I needed it. My family always helped me make the right choices. Now that I am older, as I look back I see that they were always fighting on my side. Now that I am a councilor I at times draw from these experiences while doing my work.
I honestly can’t say I had planned to work at Ekisa. All I know is that I am extremely fortunate to work here. Working at Ekisa is like a dream come true. Before Ekisa I had worked in different organizations, but I had never felt a sense of self-worth, freedom, and fulfillment with which I feel at my work.
A typical day at work for me at Ekisa is helping clients make good choices and helping them stay safe. My clients mostly are children with disabilities and parents/caretakers of children with disabilities. I counsel most of my clients in general life aspects, but most importantly I counsel my clients to embrace disability. I help them accept disability as just part of who someone is and also help them understand that they can live life to its fullest regardless of the disabilities they or their child may have. Most of the times my workday is not the same routine - there is always something or someone new so that helps keep my career interesting. With the nature of my job, my work can bring on lots of stress and could make it quite easy for me to enter a painful crisis, but I don’t let things really get me stressed. My bosses along with my colleagues are very supportive, and are able to help me process and work through stressful situations.
At Ekisa one of the driving philosophies is that there is more to our lives than our disabilities. Focusing and believing that you can become whoever you want to be is crucial to the work we do.
My bosses, Emily and Emily, are very understanding people, and they both feel that a person’s health ought to come first before work. They have a unique desire to help people living with disabilities. On several occasions when I return for work after a crisis they both often ask if I am fine. I always reply that I feel fine but automatically I am asked again whether I am really sure I am fine - because if am not fine then I can take another day off. The nurse, Erika, at Ekisa is a true gift - I cant find the right words to describe her. To me she is what any patient would wish for in a nurse. Many of my coworkers most of the time don’t understand what a crisis is but regardless of that fact whenever I am not feeling my best everyone is really helpful.
Often during my work, I look back and still think about many of us in the third world countries where most of us die like ants due to the lack of resources, education, and funds to buy medicine. This frustrates and makes me want to cry, especially when I think of what I went through as a child. With organizations like Ekisa coming up in third world countries like Uganda there is hope for people living with disabilities.
Once my lecturer asked me whether sickle cell had limited me in any way? He asked me how I coped and reached my goals?
Sickle Cell has not limited anything in my life. Making sure I am on top of things helps when I do fall sick and go into a crisis. Which means going for all my checkups, drinking lots of water, sleeping under a treated mosquito net, having family members that support me, and above all watching movies and playing my crappy Play Station 2! All of these things all have played a major role in my health. I think having Sickle Cell has made me a stronger person. Being able to do things that family and doctors said I couldn’t do have helped build my self worth. That’s what has helped me reach my goals.
I have devoted myself entirely to helping people with Sickle Cell and those living with other forms of disabilities. I am determined to work, and if I have to do my work while I am limping in pain I will. I have had my share of pain and humiliation. I want to work my best through Ekisa to help whoever I can help.
God Bless every one out there!
