My Dad died on June the 25th, exactly one month ago. The verb - to die - is fine. It fits in my reality. The adjective - dead - doesn’t. I’m still functioning as if he were alive, “right there”, where I could call him if he wasn’t resting.
He was 97 years old and his health had been fragile during the past months, a little longer, perhaps. The most serious problem, which eventually took him from us, was COPD. He had been constantly fatigued. He complained to me that as soon as he got up, he felt tired again and had to lay down. We talked about his oxygen saturation fluctuations and how that caused the chronic fatigue.
In the past many months, or even years, I guess, I was the family member who talked to him about serious or difficult matters. He didn’t have an easy communication with his children for most of our lives. The fact that he had such a wonderful interaction with his many students, some of which were closer to him than his biological family, started to disturb me at some point. Clearly, there was something obstructing our communication with him.
Not knowing what was the matter with his and my communication styles was confusing. Having a highly motivated and controlling neurotypical person micromanaging every single interaction we had - my mother - made it impossible to fix the problems.
My diagnosis came in steps, in several years. Different physicians questioned previous diagnoses and, colleagues that we were, asked my opinion on that. It’s hard to have an opinion on our behavior if we are inside ourselves. For a while, I assumed that I didn’t have bipolar disorder but I also assumed that there was “something” different about me, something that frequently caused suffering and miscommunication. Around 2017, when I was already living here in the United States, the first mental health professional told me he thought I was autistic, more specifically that I had Asperger’s syndrome (this is a nosological class no longer adopted in ASD diagnosis and care).
The dots started to connect themselves. His dots started to connect themselves, too. I remembered how “niceties” had little semantic content to him, for example. He was conditioned to use them but it was clear it was a ritual and it was detached from any interaction he would maintain with anyone. There was the notorious joke about his engagement party, when he was offered appetizers and responded with “my condolences”.
He was the reason I read with so much interest about the “intense world theory” of autism. It’s not a highly consensual model among specialists. However, the extreme reactions my Dad had to other people’s suffering looked a lot like the descriptions in those articles. If my mother got hurt, for example, and it was an accident, he could be so overwhelmed that for a couple of minutes he would be “off”. It could look like a dissociative episode. It wasn’t: in a short time he would snap out of it, make objective plans and decisions, and act. My Dad was intensely focused on his work, his great passion. If he was involved in a task from a project, he could forget everything else. He could also absentmindedly put on socks of different colors, leave his car at the mechanic and forget he did it, besides other examples of intense focus (and everything else fading into relative irrelevance). He definitely lacked people’s skills. He definitely hated political work decisions. He never wanted power - any power. Yes, he was a radically ethical scientist. It could be “just” ethics if there weren’t other signs. There were, many.
When I made my peace with what and who I was, something that was only possible after the diagnosis, talking to him became easy. Things just flowed naturally. Unfortunately, it took a little longer for us to be in the habit of talking frequently through video-conference calls. I think the frequent calls started in 2019.
There were frequent disturbances on his life during the last years. Most of them were related to my mother. The first time I noticed that the only actual conversations he had were with me was when I had to send my mother to the ER. They had both caught a respiratory infection, he recovered, she started to recover and then took a turn for the worse. It was obvious to me that it was a case of antibiotic resistance by the pathogenic bacteria and she needed to be medicated with the proper drug. While she was at the ER, I asked who had spoken to Dad and explained what was going on. Nobody had. When I spoke to him I noticed that he was nervous, anxious, feeling powerless. It didn’t take long for him to be satisfied and calm down.
I don’t understand the difficulty in communicating with him. Perhaps now, that he is not around, it can be hard. Not then. He was an objective and logical person. He was also highly educated.
None of his students ever complained that it was difficult to talk to him. I am sure they never had a problem, I know them.
I enjoyed talking to him. I dislike video-calls in general and they can be very taxing for me. I assume they could be taxing for him, too. After all, we were both autistic. I never felt like I had to prepare to talk to him. It also helped me understand that this is the most challenging part of any interaction: the preparation. It takes hours, sometimes days, to prepare for a voice conversation that is not strictly academic. Teaching a class is easy - meeting a stranger, even in a professional setting, is not.
During these past years, I tried to talk to him away from everybody else and that worked. When I had to talk to both - Dad and Mom - at the same time, it was difficult. Apart from the several technical problems (background noise, sound quality, camera placement, etc.), mother always tried to cut him and speak for him. I had to cut her and tell her that it was his turn.
I realized that talking to him became increasingly easy while talking to everybody else, or, rather, all other neurotypical people, became harder. The same happened in all my social circles. I made friends among autistic activists. Talking to them is easy, effortless. It’s still easy with many neurotypical friends but not all. I still don’t know what separates one group from the other.
The last time Dad and I talked, I had just scheduled my epidural injection to treat a disabling lumbar radiculopathy. Dad had been struggling with back pain and I talked to him about this treatment. Our friend, the orthopedist, thought it could be an option. I was, however, already out of the picture in the family’s medical decision-making, a result of the horrible communication I have with my siblings and with the care-takers that my mother chose. When I asked him how the physical therapy was going, he told me he wouldn’t do it anymore because he felt pain. My mother intervened, her face a mask of anger, and said: “you think you won’t! You will, you will!”. I interrupted her firmly and said that it was his decision to make, not hers, and that the physical therapist should know better than insist in exercises that caused pain.
After that I learned that the caretakers had neglected his pain medication and that he was, again, dehydrated in his following hospitalization.
We never spoke again. He died less than a month later.
I miss him enormously. I think about him as I wake up, everyday, and he is my last thought before sleeping. I would gladly give ten years of my life to have another ten years with him, knowing what I know now. I would give another ten to have him with me here, to travel and have fun with him.
He is my hero, my example to follow as a scientist and a guide to understand myself.
I think I will never stop missing him.