Almost two years ago around this time my eldest brother Sal was in the ICU fighting for his life, a fight he would not end up winning.
My brother wasn’t new to hospitals,he had countless nights on hospital beds, many hours hooked up to IV’s and a lifetime dealing with a disease. My brother was born with Cooley’s Anemia also known as Thalassemia. It is a blood disorder that affects the function of your red blood cells. Patients with this disorder have to get blood transfusions usually every two to three weeks. While these blood transfusions keep patients alive the frequent amount of transfusions lead to iron overload in the body which leads to a lot of complications within the body and without medication to release the iron the results can be fatal. Symptoms of the disease is delayed growth, bone problems causing facial changes, liver and gall bladder problems, enlarged spleen which has to be removed making patients more vulnerable to infections and heart problems. Medication has improved and patients generally have longer life span and also it effects patients differently depending on what type they have inherited and how it generally affects their body. But unfortunately my brother who was 39 when he died, was born in the 70’s and did not have the fortune of having the better medication till much later.
My brother had to deal with a lot of these problems, he had a lot of heart issues over the years including congested heart failures, he had hepatitis C that he got from a blood transfusion which affected his liver and is eventually what ended his life. He also had to remove his spleen resulting in him having to go to the hospital every time he got sick and countless other symptoms. He had good years where he felt great and everything was under control and others were not so great. Despite all of this he was strong, he never complained and always had a smile on his face. Anytime you asked him “how do you feel” he answer was always “I feel good” even if he didn’t. That’s something I always admired about him, his ability to always make himself happy despite the circumstances. His outlook on life is what allowed me to look at life differently. To constantly push myself to have a positive attitude about life despite what I’m going through.
Growing up with someone who has a disease also gave me a different outlook on life. My experience as a kid was very different then a lot of my peers. I knew medical terms that no one at my age knew about, I became weirdly comfortable with hospitals, as a kid I would spent long days sitting next to my brother as he got his blood transfusions. We would order lunch and watch TV and all the patients and nurses knew me as Sal’s baby sister. You really appreciate life and your health, I saw all the things my brother couldn’t do as he got older and his body got weaker and it made me appreciate my healthy, vital and energetic body. There is a lot of suffering in the world and a lot of people wishing they had your health and you should always appreciate it. Lastly it just made me a stronger person.
I don’t know where I was going with this blog post because I bring up a bunch of random points, first I wanted to talk about grief then that changed to spreading awareness and then I started talking about my experience. So whatever you get something from this post whether its awareness , learning new information, feeling grateful about your life or feeling inspired, I hope you were moved in some way.