Hi my name is…. well.. it’s a long one, but you can call me Dan. Fitting, as it goes along with my long story. Let’s start at the beginning with the birth of my older brother. A year and a half later I was born. I don’t know a world without him. During our formative years, my parents began to notice differences between my brother and most kids of his age. He was taken to multiple doctors and later was diagnosed with global academic delay. In simple terms, it means that that the typical baby milestones were taking much longer to be met (eg. rolling over, sitting up, crawling).
The early years
In elementary school, he began to fail many of his subjects, and had trouble dealing with other students in the class. As the years went on, the differences become more pronounced. As a child, I didn’t fully understand what was going on but my parents impressed upon me that I needed to stop acting like the younger sibling and start behaving like the older sibling.
My parents never sat me down to explain the situation but just kept repeating that my brother needed my help, and that I must protect him. I understood that he had needs that were more important than mine, my parents had to spend more time with him and I would get less attention, as a result. I resented it but I knew I had to find a way to accept it. It was not easy there were many times I failed to keep that resentment in check. Even to this day, I am ashamed to admit that I told my parents that they loved my brother more than me. Today as an adult, I understand why they did what they did and just how much that would have hurt them.
A fork in the road
Fast forward to middle school, my brother was transitioning from attending regular classes to special education classes. When it came time for high school, we had a choice to make. It was either attend a school specialized for individuals with special needs or the high school I would be attending the following year. After some thought, my parents decided against the specialized school as they thought it would be best to keep him around me. I look back and this is where we started failing to met my brother needs.
My parents were (and still are) huge proponents of ‘Follow the plan and everything will turn out fine.’ The plan goes something like this. Get good grades in school, then get into a good university. Get good grades in university, then get a good job. Find a good partner, buy a good house and then have a good family. Looking back, I don’t think my parents were ready to accept that my brother was different as it required letting go of this plan for him. They did not want to believe my brother was the same as the other special needs kids and desperately wanted him to follow ‘the plan’.
My brother slowly began slipping through the cracks at school. He “graduated” from high school without basic english or math skills. Then came the even more difficult question of what to do next. We knew that most traditional university and colleges were not going to accept him. Let’s not even talk about traditional employment.
The guilt, shame and denial
This is the part of my life where the emotional stuff kicked into high gear. The resentment of being saddled with the burden of my brother was unbearable to me. I didn’t ask for this! At the same time, I knew that my brother didn’t ask for this either. I was jealous of all my friends who didn’t have this “problem”. I also felt resentful towards my parents for not taking care of it all. My parents didn’t know where to turn or how to ask for support. If I don’t step up, then who will?
Even now, talking about mental disability and my brother is still a difficult topic. Back then, everyone was trying to hide mental disability from public view. This silence led to fear, hopelessness and isolation. Am I alone in this? How do I dig myself out of this hole? What if I can’t?
When I graduated high school, I had the opportunity to move away for university. I jumped at the chance. I wanted so badly to just run away from it all. For a few years, everything stayed the same. My brother stayed home not doing much other than watching tv. Eventually my parents came up with a plan to send him to school for language classes. They thought this would give him something to do, a schedule and help continue his schooling.
More curve balls
With a bit of help from my parents, the first semester seemed to have gone well. Things started to fall apart in the second semester. As a remedial language class the schedule was consistently inconsistent, timings were changed and room locations were switched. This threw my brother off balance. Maintaining a consistent schedule was extremely important for his mental health (though we didn’t know it at the time). He would go to school by himself and there was no support and the feeling of being lost really got to him.
He started to unravel slowly. He started to hear voices and began getting more aggressive. We would find out later that he had developed schizophrenia. He thought a reality TV character was telling him that he would come to my brother’s school and have my brother on the TV show. He began leaving for school at odd hours searching for this TV character. Our family was very confused by why he was doing this. Instead of trying to understand the situation or involving a professional, we tried to stop him from going outside at all. This caused even more stress and fighting at home, culminating in him leaving home in the middle of the night, while we were all asleep.
The next morning we awoke to an empty bed and were all panicked. After searching for a few hours I found him at school wandering the halls. When I approached him, he tried to run away from me. I was forced to tackle him to the ground. School security quickly got involved as this happened on school campus. They took my brother to the hospital and I was left to explain the whole incident to school officials. Meanwhile, the doctor at the hospital diagnosed him with schizophrenia.
The stand still
This incident left everyone scared and unsure of what to do next. My parents and I were terrified of pushing my brother to do anything new after witnessing that disaster. We just wanted to keep him safe and at home. It would be years before we would try to change anything in fear that something still worse would happen. I felt hopeless and helpless. Instead of facing the problem head on, I tried to distract myself. I focused on my career and social life. I procrastinated a lot when it came to his life.
Every once in a while, a thought would pop into my head on what would happen to my brother when my parents pass away. It would paralyse me. Can I really put my life on hold to try and take care of him? I felt like a selfish brat for thinking that I didn’t want to spend the rest of my life taking care of every facet of my brother’s future. But no matter how I sliced it, I love my brother and I wanted to take care of him. We grew up together and played together. Even when arguing with my parents, he would be right there supporting me. Granted he didn’t know what exactly the argument was about, he just wanted to support me.
The Now
Which brings us to the now. What do I do? I couldn’t shake the feeling that my family and I are so alone in this. Yet the statistics clearly do not support that.
According to CMHA, (Canadian Mental Health Association) nearly 1 in 5 Canadian will experience a mental health problem or illness in any given year. This covers depression, schizophrenia, bi-polar disorder and so much more.
By age 40, about 50% of Canadian population will experience a mental health issue at some point in their life.
Schizophrenia alone impacts 1% of Canadians. At the time of the study Canada had 35 million people, meaning approximately 350,000 people are suffering from schizophrenia alone. This number does not include all the families and friends of those individual who are also affected by all this. How the hell do I feel so alone when there are so many of us?
A beacon
This is my big WHY for this blog. There are so many of us out there feeling alone, myself included. I started this blog as a way to reach out to other caregivers of individuals with mental and physical disabilities. There are so many resources out there but it is really difficult to find them. And even when you do, the wait times are anywhere from months to years. There is so much we have all figured out for ourselves but all this information is in silos. By pooling our knowledge, we can figure out solutions to problems way bigger than any one of us can solve. And we won’t have to do it alone! I want to create a one stop shop where information can be gathered and stored. A safe space for families and caregivers to swap stories and share tips/hacks.
This is where I am starting my journey to finding independence for my brother. I will document as much information as I can find. I don’t know where this will lead but this is a challenge that I want to face head on.