Childhood Trauma Anyone?

I’m not going to lie. I have been struggling thinking of something to write about this week. However, I think that since I have been talking a lot about how my week has been and what I’ve been doing to find my inner peace and whatever, I am going to delve into my past a little and talk about how it affects my present.

Today we are going to go waaaaay back to my childhood, but before we do that let me talk about my older sister. She was diagnosed with Fanconi Anemia (FA) around 8 years old. It is a rare genetic disease that mainly affects the bone marrow and results in a decreased production of all blood cell types. So essentially her bone marrow wasn’t doing its job, as a result she got blood transfusions weekly when she was 12-14, and a bone marrow transplant when she was 15. She died at 32 from Squamous Cell Carcinoma in her mouth and throat. That cancer and Leukemia are typically the illness that kill Fanconi Anemia patients if they reach adulthood. Later I will probably go more into detail about her cancer and death but for now I am going to focus on how having an older sibling with a medical condition affected me as a child and continues to as an adult.

I was too young to remember her diagnosis, but I do remember other things like the frequent hospital visits, the sheer number of medications she was on, the inability to play her favorite sports because she was too “delicate”, going to camps to meet families and children with FA and not seeing them come back the next year, and the mental and physical toll it took on her as well as my parents to deal with something like this. Her life expectancy was 13 years old. She saw the odds stacked against her and she met and surpassed every one of them. She was unbelievably strong and my parents… to this day I don’t know how they did it. The bone marrow transplant, preparing for it and during it, were probably some of the toughest times for all of us. We almost moved to Germany for it because only a couple doctors knew about the disease and knew these children needed to be treated differently than others. She ended up getting her transplant in New York. During this time our family was split up, my dad was with my brother and I most days because we were in school and he worked, while my mom and younger sister, who was only 2, would stay in New York with my older sister. They lived up there for months, and sometimes my parents would switch off with who was home with us. We would go visit them on weekends and made some friends that we would run around and play with at the Ronald McDonald House.

Most of it wasn’t so bad as a 10-year-old, if you didn’t think about the fact that your big sister might die, but the main thing I remember that still really affects me is that I taught myself my worries weren’t as important as what my parents were already worrying about. I didn’t want to add my burden onto theirs. I was having trouble in spelling, and I vividly remember thinking that I didn’t want to bring it to my parent’s attention because they had more important things to worry about. This was through no fault of theirs, they always made it clear that we could come to them about anything but how was I supposed to talk to them about spelling when they were worried about whether my sister would survive to the new year? I couldn’t have them worrying about me failing spelling, so I shoved it down and studied harder. I taught myself that my needs could be put on the back burner, that my fears and worries and emotions were less important and should be kept to myself. To this day, I have trouble sharing my thoughts and emotions with my parents. They think that I am just reserved and keep everything inside when for a long time, it seemed impossible to talk about how I was feeling with anyone. I have come a very long way in my adulthood since then. Honestly, it wasn’t until my toxic relationship that I forced myself to start talking about how I felt and the things that upset me. She somehow manipulated me into talking about me feelings while simultaneously invalidating every single one of them. Somehow though, it helped. Some days it is still hard for me to discuss how I am feeling with others. The words get caught in my throat or I push them down as not being important or valid, but it happens less and less now. I have a partner who listens to me and doesn’t make me feel bad for feeling things, my brother has always been there for me and listens to me and helps me work things out. Past programing is hard to undo but with patience and active effort I have mostly unlearned those behaviors and improved my communication skills.

You, like myself, are worthy of being heard, what you say and think and feel is important. You are not a burden and anyone who treats you as such should honestly be cut out of your life. The people who love you for you are people who want to hear you and help you, so don’t feel like you can’t go to them with your problems. They’ve probably been waiting for you to ask.

With all the light and love,

Alyse

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