What it is like living with a disabled family member…
By: Emma R. Ferguson
Tags: Life Lessons, Sisters, Learning, Self Help, Disability

Obviously these experiences can vary due to different circumstances. For instance, if my mother had been disabled I would have had a much harder time than I had with my sister as my sister was not a primary caregiver. My sister however was disabled so I am going to try and put this in perspective as best I can.

My sister, 22, is a lot taller than me and weighs a lot more. As a young child I thought she was just a normal teenager, but growing up I realized that she may not be entirely normal. I had conversations with my parents about her condition and went through many traumatic experiences regarding her.

I was smaller than my sister and her mood swings were often unpredictable. I was constantly walking on eggshells and I had to stay one step ahead of the curve.

She easily became obsessed with certain things, if she had watched a movie that involved dragons she would then actually believe that dragons were real, same with dinosaurs and Vikings, and vampires. She believed in witches and wizards, and since I was still fairly young I went along with it.

Things began to escalate though she would get mad and get in my face or start screaming and crying stating that she was having a seizure. Her being about three feet taller than me at that point it was scary, to the point where I can barely remember her in my childhood.

Because of her constantly changing mood I became extremely empathetic towards my parents or anyone I came in contact with. I had gotten into the habit of doing things myself as to not bother my parents and hiding my emotions to keep them from worrying.

This led to constant stress and I needed an escape, I turned to books. I got lost in the story lines and never really cared what anyone thought of me, it didn’t matter, I had my family and myself. I have trouble moving on to different books on my own because I have such a strong connection to certain books I would hate to give them up. There is a constant and comforting predictably in a book you have read over and over again.

When your life is constantly unstable you find stability in a carefully balanced rock or a platform made of sand.

In school I was an over achiever, I got good grades and always put school work first. My sights were set on a very prestigious school that costed a lot of money, more than we could afford. To get into this school and hopefully receive a scholarship I needed top grades. Which I got at the expense of my social life which had already deteriorated from my sister.

Still I was facing battles I had not even known to brace for I had encountered the first seizure I had ever seen while my parents were not home, only my sister’s para. I called the police and an ambulance was on their way, I quickly moved to be best of use calling everyone I needed to inform and keeping tabs on the situation. That was not the only seizure so had encountered though, there was another one as soon as my family had arrived at our vacation house. Acting quickly I grabbed a note pad to time her seizure to find out if it would last longer than three minutes, if so emergency services must be called. These situations forced me to work quickly and calmly under pressure.

While good things did come out of my predicament there was also a lot of trauma. I never seemed to be able to completely calm down and always felt on edge about something. I felt as if something bad was always about to happen. I also felt a growing resentment towards my sister, something that I knew I had to get over.

It was hard, I knew that I never had a shot at a normal life, and this is one of the reasons I dislike my household. I have never had a completely happy Christmas or Thanksgiving because she always had something to freak out about which was unnerving and scary. There are so many bad memories that I feel overwhelmed especially when trying to fight depression during the pandemic.

Interactions with my sister are tough and traumatic, overall they typically end with me crying, though not many realize. Being self-reliant had become dangerous as I felt that I could not talk to my parents in fear of worrying them. I turned to self-harm; I was so desperate for some sort of control in my life that I felt this was my only option. I had also struggled with suicidal thoughts, I could not understand why I was blaming my sister when I knew it was her fault. I could not blame my parents as they already had a lot on their plate, my brother had moved out, people were constantly telling me that she can not control it and that is not her fault, who else is there to blame except myself.

I lived with my sister for thirteen years of my life. Which left me with deep scars, and years of trauma that I have barely begun to unravel. In desperate need of support and validation.

Many misunderstand me when I say that I need validation because I have many people there to tell my that I am doing well and what I do is amazing. I need validation from myself because the only thing I see when I look in the mirror is someone who is afraid of who they are and what they could do.

I need to be there for myself more than I need anyone else to be there for me. I pulled myself out of a deep dark hole without anyone’s help, I kept myself alive. My question is, how do I forgive me for putting myself there in the first place?