I’ve been putting off writing this post for days, turning the words, thoughts, and feelings I want to convey over and over in my head. I finally decided to just start typing. I’m writing about a subject very near and dear to my heart, as well as a very emotional one.
My older brother by 15 months, Bill, is autistic, more specifically, he has Asperger’s Syndrome, meaning that he is on the higher functioning end of the autism spectrum. It’s been really, really hard to watch Bill, who is now 35, deteriorate in the manner in which he has.
Looking back, I see the older brother, almost my twin, to whom I looked up, followed everywhere, and wanted to do everything he did. We played all the time and were so very close as children. We especially enjoyed being outside and playing Nintendo, primarily The Legend of Zelda.
We were kids back in the day, when you didn’t have the option to save your game on the original NES. My cousins and I would sit in awe and watch as Bill played virtually any game and defeat it in a single sitting, saving be damned!
Bill has always had an uncanny memory, knowing each extended family member’s age and birth date by heart. I recall going for walks with our parents and Bill and I would walk ahead, quizzing each other regarding state and international capitals. We both had world and U.S. maps in our rooms and pored over them religiously.
If I were writing on paper at this moment, the ink would undoubtedly be smudged. I can’t help but continue to grieve the brother I never had and never will have. I love my brother so much my heart could burst into a million pieces. I have always wanted to protect him and contain him in a cocoon of love and safety.
I grieve that I will never have biological nieces and nephews; Bill is my only sibling and it’s very apparent that marriage and children are not in the cards for him. While I adore the children of my in-laws, I don’t think it will ever be quite the same.
I have always yearned for Bill to be ‘normal’. On the other hand, I couldn’t imagine him being any other way. Our cousin once asked what I would do if I had the opportunity to give Bill a magic pill that would erase his autism, make him ‘normal’. I pondered the question for a while and finally said I couldn’t do it – I couldn’t change Bill after his living in the mind God gave him for 35 years.
Bill would always say “that’s the way God made me” when he hit middle school and began to realize he was different from his peers – a lot different. I don’t think he ever fully grasped the concept of his autism when my parents attempted to explain to him just why he has always been different.
I remember telling my psychiatrist, who had seen our family, including my brother, for at least 20 years, that I felt guilty at times because I wasn’t the autistic sibling instead of Bill. My psychiatrist eased my horrible feelings by explaining to me that Bill’s world is small, it always has been; it’s all he knows. My beloved now-retired doctor assuaged my guilty feelings, thank goodness.
I have never felt capable of discussing my feelings about Bill with anyone outside my immediate family and husband. No one really dug for answers when I was younger and I rarely offered tidbits about my home life anyway. This fact has led to loneliness on my part. I wish I could talk to more people about my brother, but it hurts too much and I don’t often feel empathy from others when I do let out an emotion or two.
In a way, the featured picture I chose for this post makes me think of how Bill is in a way heading farther and farther away from me, and reality. He is riding an escalator into another world, a world that I can’t join him in. I feel him slipping away and the pace of his deterioration seems to be accelerating.
Sometimes I wonder if he has auditory and visual hallucinations. He’ll make comments here and there about someone showing up outside his window, which doesn’t open, and bringing him lunch. Perhaps the worst part of his deteriorating condition is the fact that he is becoming incontinent, in the urinary way.
Bill hasn’t always been in the shape in which he’s in now. In high school, he was much more popular than me – I was known as ‘Bill’s sister’ until I was a senior, when I no longer had a claim to fame. My beloved brother is still known as the best football team manager ever in the history of our high school. He traveled to games with the team on buses and even blew teammates’ minds by having the ability to lift much more weight than them – Bill is a big, imposing guy, although he’s really and truly a teddy bear at heart.
To further illustrate his worsening condition, when we were teenagers, Bill would hug me, our mom, and our dad and tell us each that we were the best ever. I haven’t heard those words in so many years; he also no longer initiates hugs. Bill told our dad a few weeks ago that he loved him, spontaneously, which brought my father to tears.
Bill was high functioning enough to hold a job with our town’s public maintenance department for at least 15+ years. He got along well with coworkers, was on a routine, and was proud of his job and what he’d accomplished. During his last five or so years with the department, it became obvious to his longtime coworkers that he was basically going downhill and was no longer functioning like he did. He had also become hostile and mildly violent.
After a lot of discussion, my parents decided it was time for Bill to retire from his full-time job. Because of that job, Bill earned lifetime benefits from the city, a major feat for someone who is mentally disabled. I try to remind him of the wonderful things he has accomplished, as he sometimes speaks in a delusional manner, confused about why he no longer works and why our lifelong psychiatrist retired.
You see, change is very difficult for autistic people. All I can guess is that Bill is still adjusting to some big life changes he has experienced in recent years. Our paternal grandfather passed away unexpectedly in 2011. Although he doesn’t speak of him, I know Bill misses Granddaddy a great deal – there has to be a hole in his heart. My grandfather took Bill to church every weekend, which Bill loved. And then, when Granddaddy died, Bill’s routine was completely swept like a rug from under him.
In addition, our dad moved back home full-time after pretty much retiring from his job, which was located six hours away from home. Since Dad lost his job in our hometown when I was a seventh grader, he worked all over the place, even as far away as Georgia – we’re from Tennessee. We lived with Dad only being home on the weekends for about 20 or so years, so it was a tough transition for Bill, who was used to living only with our mom. Luckily, he has gotten so much more comfortable with our father being home every day again.
My plan has always been to have Bill live with me after Mom and Dad can no longer care for him. Sometimes I think that I won’t be able to handle him – my worst nightmare would be sticking him in a nursing home or someplace similar – there is just no way I could ever dump him. I can only pray that I will be capable of caring for my brother. Luckily, my husband loves Bill and would do anything for him, to make sure he’s safe and taken care of.
While I hurtle toward the future, unknowing about what lies in wait for me, my family, and most of all, for Bill, I reminisce a lot about the great times, and there have been many, that I have had with my big brother.
I try my best not to worry about what exactly is in store for us, but it is difficult to reframe my thoughts sometimes. Writing this post has been very cathartic; I’m really glad I chose to share a glimpse into a very private part of my life with you.
Perhaps I will write more about Bill, as opposed to bottling up my feelings…
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