We often hear about the work of care givers, the hardships and sacrifices made in the process of caring for those they love, but it is rare to hear from those who need that care and the perspectives from that side.
I am 49 years old and autistic. These days, my symptoms are minimal, but that wasn’t always the case. I was developmentally delayed in many ways, in language, motor skills and intellectually. I did not speak until age four and required several years of speech therapy. Many simple physical skills also eluded me, such as tying my shoes or those requiring balance, like riding a bike or even running in a straight line. This was the 1970’s though and mild to moderate autism was seldom officially diagnosed. I was just considered ‘slow’ by adults and ‘weird’ by other children.
As a result, I had great difficulty intreacting with the world. Other children didn’t know how to deal with me and adults were often put off, but I did have one advantage.
Forrest was almost three years older than I was and took it upon himself to smooth the way for me. He was there to step in when I was picked on and would help me on those occasions when the world became too bright and noisy, leading me to quieter places.
Of course, it wasn’t always perfect. I was his little brother, after all and, like all big brothers, he had a duty to torture and tease me, but that was his right alone and he protected it jealously.
As the years progressed, I learned to adapt and needed his help less frequently. We often went our separate ways, as boys will do, but always came back together. By the time I entered high school, my symptoms began to level off and began improving. This wasn’t something that anyone had expected and it was several years before I understood what was happening.
It is now understood that a small percentage of children with autism will begin to improve during their teenage years. The syndrome never goes away, as such, but the intensity of symptoms will decrease, sometimes seeming to almost disappear entirely. I wasn’t quite that fortunate, but my sensory overloads became very rare and the sensory delays disappeared altogether. I was still socially awkward and given to freezing up when decisions needed to be made, but I could usually function in society without being given a second glance.
That said, I still needed looking after and Forrest took that upon himself, as our parents had passed away by this time. We moved in when I was 22 and he was 25 and we never looked back. While our situation was never formalized, he was my caregiver, catching me whenever I fell. Which was fairly often.
I got a job as a groundskeeper for a local televison station and he was a welder whose skills were in demand. Somehow, I ended up moving indoors at the station, running cameras and videotape and eventually directing the nightly newscasts. That job was wonderful therapy for me, as it exposed me to complex social situations and taught me to handle responsibility in a way that I had never thought I would.
Forrest still handled the day to day routine though. It seemed that I was never able to wrap my head around the paying of bills or the necessity of keeping a house clean, so I handed over most of my paychecks so he could take care of those things for us both. He was a true blessing, never taking advantage nor letting me come to harm. From an outside perspective, we were just two brothers that were perhaps a bit closer than usual, but it was far more than that. I absolutely depended on him.
Then on December 6th, 2017, at 7:45 pm, he died of a pulmonary embolism. It was just after we had eaten dinner and settled in for an evening of TV. It happened right beside me and there was nothing I could do.
Needless to say, I was crushed and did not respond well to my new situation. Disconsolate and alone, I quit my job and isolated myself. Bills went unpaid and I quickly found myself in danger of becoming homeless.
It was several months before I realized that I knew what needed to be done and set about righting the boat. Forrest had given me the needed skills without my ever having known it. It also turned out that I had far more friends than I had ever believed.
I’m still in the process of putting my life back together, but I know that I can do it, thanks to my brother and my friends. I’m still autistic, but functional and with all the skills that he taught me.
He was my caregiver and my brother. I’ll always miss him, but I can go on, knowing that he is still taking care of me.
Forrest Messer/Douglas Messer