“It is hard to explain
So how can I help you understand
When you don’t know what I go through?
How could you?
It’s a world that is not yours
But we carry each other through it all
Until the bell tolls and we answer the final call.
If only you knew.
If only you could see the world through my eyes.
I want you to see the world through my eyes.
You don’t know what it’s like
To live the life that I do.
Let me show you the world through my eyes.”
~ Matthew Kushi – The World Through Your Eyes
What am I talking about in this lyric/poem? Would you believe me if I told you it was me? This is a reference to one of my identities – a sibling.
Many of us have siblings. Each of our family relationships are unique to us. Like many others, my family relations and my role as a sibling has helped define me. That in and of itself isn’t unique. What makes my story unique is the nature of my sibling relationship. Like some siblings, I have a sibling who has to live his life under a different set of circumstances than myself – the circumstance of disability.
Now, I have been reluctant to write a piece on this for many different reasons, including comfort level and how others receive it. So, as a disclaimer, I would like to note that I don’t perceive the story I am about to tell to be a negative. However, I feel that it would also be unreasonable to assume that the circumstances that my brother and I have gone through has not shaped us through it being a different experience. This is my story.
So, let me tell you about my big brother, Joe. Joe was born in the early 1980’s when medical technology was not what it is today. Joe was born 13 weeks premature and was quite small at birth – only 2 lbs. In order to save Joe’s life, he had to be given oxygen, which resulted in a brain bleed. As a result, Joe has had Cerebral Palsy and Intellectual/Development disabilities all of his life. However, that does not define who Joe is. I am often asked what Joe is like. Joe and I have similar temperaments. It’s just that our temperaments are expressed in different ways. You see, Joe is blind, non-ambulatory and can make vocalizations but does not speak as you and I do. He has to express himself differently. However, there is no mistaking what his intents are most of the time.
So, what is it like being a sibling? Well, in many regards, it is the same as any other sibling relationship. It is the same in that you are two humans from the same blood with distinct personalities. You fight with each other. You console each other. You have fun with each other. It is also different in many ways. In my life, growing up meant helping my folks out with Joe. It meant sometimes doing, or not doing things, differently than others. When I was younger, I would assist where I could in various small tasks. Nowadays, I help as needed in any task. This can mean lifting Joe into his chair or assisting him to the dinner table. This can mean helping with meals or helping get him situated in the bathroom.
As a sibling, you are exposed to what true love of another human is as your family tries to work out the best situation for all. You learn the values of empathy and compassion. You tend to grow up and mature faster than others, but you are the better for it.
But there is another side as well – a side that is not as storybook and that has only recently been talked about. There is a human element, as in all things, for a sibling and it can be extremely complex. There are those who judge you, your family and your sibling without meeting them. You can be bullied in school for your family being who they are. For some, it is the internal battle that is the most draining. You can feel caught between feeling things that are completely normal but that you ashamed for feeling. Suppression of feelings is common – even with the knowledge that there are SibShops out there. Sometimes, as a sibling, you don’t want to rock the boat. Sometimes, you just can’t explain what you are feeling – how you wouldn’t change a thing about someone but how you wish you could at the same time. For those who don’t understand and those you are not sure if they want to understand, it is difficult to explain the strange sense of survivor’s guilt or anger that you may feel. It is hard to explain the fear that you may feel – the fear of the future and the fear of whether your efforts will be enough. Sometimes, even if you want to talk, you are not sure how to make others understand because it is a world that is not theirs.
That lyric/poem that started this article? That was my way of expressing these thoughts. Read them again. This is an issue that I tend to talk about but not talk about as I am in this article. It is hard to explain to others because it is not their life.
So, as can be seen, much of the above applies or has applied to me. Even now, I have a strange pendulum that I balance. On one hand, I would not change a thing about my brother. This is our life. On the other, I would give anything in the world to give him the ability to walk, talk and see. I would. It is that strange world in which we live in.
So, again, is our brotherly dynamic is different due to what Joe has been through? Yes and no. All sibling relationships are unique and special. Ours just has a different scenario. Joe and I, we have our own path on which we journey due to the circumstances. In the final analysis, we are brothers and have the same bond and experiences that countless other siblings do. You see, the disability may be what people notice on the outside but it is the ability of the person as a human that defines them. You do not judge a person by their cover and by what is outwardly noticeable about them. You realize them for who they are as a person.
In Joe, I could not ask for a better brother and a better friend. I can only hope to educate, inspire and make as much of a positive difference in others’ lives as Joe has. People have told my family that they became nurses because of Joe. Was this the way that it was supposed to be? The younger brother taking care of the older brother? I don’t know but it is our life. It has been different and challenging at times. But not negative. On the contrary, I see the positive impacts. As a sibling, it is one of the defining factors in my life. This is my story.