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Neurologic is a podcast produced by autistic Leo Jones about autism, autistic advocacy & self-advocacy, issues of importance to autistics and the autistic community, and much more.

You can reach Neurologic by email at: neurologicpodcast@gmail.com

A Time To Be Alive

Jan 12, 2019

I've tried to write this post countless times, but haven't really found a satisfying way to begin or end it. So I'm just going to lay it all out here, and hope it makes some sense at the end.

Last year finalized, at least for me, in a cacophony of heartache, depression, foggy numbness, triumph, annoyance, surprise, joy, and an overall feeling of being absolutely and utterly drained.

In September, I hit a road block. Between a lack of satisfaction with recent episode recordings and tension over a new contract at work that was long overdue to be enacted, I had to walk away for a bit. I considered starting to blog in addition to recording episodes as a way to make more meaningful content on a more frequent basis while also manipulating my time so that there was more resources for episodes to be created, recorded, edited and published. Looking towards other autistics who record and write, it seemed like a smart idea that would also adapt with my functional needs.

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October came and went in a flash; the work contract was approved, but due to a significant number of persons quitting, my schedule ended up getting temporarily changed.

I do not do well with change - in my personal life I can cope okay, even sometimes thrive; but at work, it ends up causing major difficulties that impact outside the workplace.

So, with a temporary schedule of a few nights followed by some days (I chose this as a compromise so I wouldn't be stuck on the night shift permanently), most of my activities outside work were derailed. Neurologic was put on hold until I got used to the new schedule, using whatever time I could to write down topics, rants, ideas for future episodes and try to work out how I wanted to schedule blogging and recording for better consistency.

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My regular schedule returned in November as work hired people and quickly brought them up to speed; things were looking up - I got a raise, my old schedule back, and Thanksgiving was approaching. It felt like it was going to be a better holiday season, even with the cold weather I absolutely despise. A new holiday episode started to form in my head, even as I ran out of time to write or record something about Autistics running for public office.

Then, I got the phone call.

It was my Dad - my mom had fallen down in the bathroom and he couldn't get her back up.

I left work and headed straight for the hospital, thinking about what might have happened, how long would she be out, knowing her absolute avarice towards doctors and nurses would shorten her stay regardless of any professional recommendation.

Turns out, she had suffered a major stroke - a stroke that took out her entire left side.

She could no longer talk or move about without major assistance; swallowing and even breathing was extremely difficult. I went into advocate mode, immediately telling others what to do, asking her what she wanted, having her respond by grasping my two fingers in accordance to a number - 1 being “no” and 2 being “yes”. I argued with my dad about her DNR order that she had stated many, many times throughout her life (and also had placed in her will) and dealt with the nursing staff.

I held my tongue and my rage when a nurse talked to me about my mom “going to god”, which lit up so many emotions in my brain - but I knew if I lashed out at her I would most likely get thrown out of the hospital. I'm still quite bitter about that, but the nurse that took over the next shift was much more appropriate and considerate.

Despite years of conversations about her end-of-life choices, it was still despairingly difficult to be at that hospital. But our discussions allowed me to cope better with her being there; I knew exactly what she wanted, when she wanted it, how she wanted it. No guessing games, no perpetual arguments, just clear guidelines and steps to take. My emotions were rocky and unstable, but I had that clarity I could cling to even with the torment of my grief.

My mom lasted through Thanksgiving, but unfortunately we couldn't bring her home for the holiday; we spent it in hospice - better than a hospital room but not really the way she wanted to go out. My last memories of her were telling her what I had learned, that I would take care of dad, and that I loved her very much, and that I was thankful for my life. She told me - as best she could - that she loved me too.

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I haven't really discussed my mom much with many people, but I credit her with a lot of my development as a person, and even as an Autistic. My diagnosis (only given after visiting three different psychologists, with one recommending boot camp because it worked for his son) was seen as a moment of discovery, fascination, understanding, a new frontier of exploration of who I am.

We went out for ice cream that day.

I don't think mom ever understood the neurodiversity movement, but she wasn't against it - and it was difficult to explain it when I was learning about it myself less than fifteen years ago. She did teach me to work on controlling my stims, be more social, learn how to engage in conversation, and make eye contact, all of which could be considered beneficial in surviving the socio-economic world we live in. It has paid off in some ways, but in others, I had to forge my own path, learn on my own, figure things out my way.
One of her favorite memories of me that she would always bring up when I was feeling lost or defeated was from my time at the local two-year college. At the time I was making decent grades but they began to slip; I was skipping classes to hang out on the quad and in the student union, staying out late at night with people I met. We were arguing about it one day when I finally just turned to her and burst, “Mom, I want to learn to make friends!”

She backed off, supported me, even as my academic performance suffered, and I sometimes made questionable choices regarding the friends I was making.

What she learned, she told me, was that I knew what I wanted, and I was going after it - and being able to see that certainty, that drive, was more important to her than the grades I made. There is no college for understanding relationships, platonic or otherwise, but after twelve years of feeling left out, forgotten, made fun of, and in general never truly feeling like I belonged....to my mom, my actions made sense.

I don't think my mom was wrong to push for my “normalization” as it were, mostly because she just didn't know any better, she didn't have nearly any of the information and resources that are available today. I'd also like to think my existence challenges the stereotypes that plague Autistics across the globe as being incompetent, incoherent, violent, lacking in empathy, etc, etc. Not to show that we're like everyone else, but that who we are is much more diverse than most anyone can understand, deserving in equality, accommodation, and a voice that is heard louder than those who claim to speak for us.

Would she have raised me the same way, had I been born closer to this period of time?

No, I don't think so. With the wealth of autistic authors, speakers, and professionals accessible to the public, she would have definitely taken notice and tried to learn as best she could for my benefit. She wanted to be a better parent than her own were, and I'm confident that had she the resources of today, I would still be who I am - just more aware and embracing of my Autistic self.

My mom was a complex, bright and tenacious woman, who treated others with kindness and generosity, a friendliness that was somewhat disarming and uncommon. She had a genuine passion for the arts, specifically theater, impressionist artists and a distinct taste in music. I will miss our conversations, her hugs, the food she made, and her creativity that came out in a multitude of ways. She will be deeply missed.

--

December was a bit like November, but in reverse - with the bad before the better.

My grief and lack of meaningful bereavement time (work gives only three days for an immediate family member) took its toll on me psychologically, which then turned psychosomatic in painful sensory and anxiety issues. My skin became severely oversensitive to any cloth - sweaters, pants, jeans, even the sheets on my bed; it was as though my nerves were exposed to whatever I wore. Typically warm temperatures were suddenly not enough, as I was constantly cold; I frequently drained the water heater from how high I had it set during showers. My anxiety went through the roof, and it was like I was piloting my body but no longer had control. Sometimes I would get dizzy and feel like I had a sinus infection, with a combination of pressure and vertigo that some days never seemed to relent.

I came down with an actual sinus infection shortly after attending an important sports game, trying to be around some friends and seek out some fun as a way to de-stress and relieve some of my grief. Being out sick from work, oddly enough, helped me to feel better. Though at times, when I hear, or see, or smell, or taste, or even touch something that meant a lot to my mom, these physical manifestations of my grief sometimes come back. It can be very frightening and disorienting to try to hold close the memories of someone, yet have them cause such harm.

I worked Christmas Eve and Day. Major holidays are usually quiet, pretty relaxed, and any problems are seldom numerous or minor. Also, the holiday itself just seemed less important, less meaningful, with a loss of whatever ‘spirit’ I assigned to it ever since I was a child.

Boxing Day, however, has become more to me, especially after recent events. See, back in 1914 during World War I, there was an unapproved and informal Truce held along the Western Front. Opposing soldiers exchanged gifts, food and drink, and even played some soccer with each other. They buried their dead and sang together, celebrating a holiday that was universal to all sides at the time. While it didn't last (word of the Truce eventually spread to commanders, who quickly rotated those soldiers off the front lines), it marked something unique - a brief period of time in the middle of horrific violence and death where peace, camaraderie, and humanity bloomed.
Where I live, there is an annual soccer tournament called The Truce, and it includes 3 vs. 3 matches, a buffet of breakfast foods, and English Premiere League soccer matches played on multiple TVs (and even on the main theater screen). It's fun, pressure-free, and is not constrained with postmodern messages about any reasons for a season. Attending this year was especially important, as I got to take Dad with me, along with a couple of friends who were able to get the day away from work. Creating our own tradition, I think, has and will do much to help us cope as the years continue.

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So now it's January, and I'm finally able to get around to posting something to Neurologic.

Fortunately, there's not a lack of ideas - there's a stack of episode topics, including: intentional communities and registries, media representation and stereotypes, net neutrality and online autistic culture, why autistics should run for office, advances in neurodiversity, ABA therapy, etc. All topics that Neurologic will attempt to address this year, at a hopefully more consistent rate.

2019 is definitely looking to be an interesting, if not stressful, year for autistics. Now more than ever, it's truly a time to be alive.

Thank you for reading, for listening, for sharing.

- Leo