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Welcome to Tenacious Genealogy! This is another post for the 52 Ancestors in 52 Weeks challenge that I’m participating in this year. It is a challenge hosted by Amy Johnson Crow every year and I figured I’d get in on the fun. This is the week 6 prompt (which you can already tell I’m lagging behind on) and it is: ‘Surprise’.
This week I’m going to focus on my great grand uncle, Arnold Gerbe. Someone I never knew about until recently and whose existence was a surprise to me, but the knowledge of whom, ended up giving me a lot of closure.
January 23, 2007 – The day I had my first grand mal seizure
I had just broken up with my first college boyfriend that morning, gone to classes feeling miserable, and ‘dozed’ off in Spanish class after noticing that I couldn’t focus on the teacher. When I woke up, I was on the floor, the room was empty of chairs and desks, and one of my classmates was asking me how many fingers was she holding up. Initially, I thought I was in some Spanish adobe church when I had woken up and then realized I was in a classroom. When my classmate asked me about her fingers, I was confused as to whether or not she wanted me to respond in Spanish or English. Because I couldn’t focus, I answered her in English and she seemed relieved.
That day, I went to the hospital, had a bunch of tests done to make sure my seizure wasn’t from anything more serious and was then released. Over the next few months, I learned that my seizure wasn’t a one-off, that I had some kind of seizure disorder (which type of disorder wasn’t pinned down for a while) and that it was genetic.
Talking to the many ‘head doctors’ I visited during that time (some of them neurologists, some not), I was told repeatedly that since it was genetic, someone in my family had to have had a seizure disorder.
But there was no one that I knew of in my family who had epilepsy or any other kind of seizure disorder.
There was one ancestor (a great great grandfather) who famously had a brain tumor, was sent to a ‘mental institution’ until it was removed, and then died a few years later, too embarrassed to come home.
But… When I mentioned this to the doctors and asked whether that could be the reason, they all said no. My seizures weren’t caused by any kind of brain tumor, just (in layman’s terms) ‘too much electricity’ in my brain.
Fast forward to about 2016/2017. By this point, I’ve traveled and lived overseas, graduated with both my undergraduate and graduate degrees, gotten married and had my first child. I’ve always loved genealogy and at that time, I was working on one of my maternal lines. Specifically the Gerbe family. My mother’s paternal grandmother was Ruth Evelyn Gerbe. The Gerbes were a farming family in Michigan around the turn of the 20th century and in the 1920 census, I found them with 4 children. The two middle children were my great grandmother, Ruth Evelyn, and her younger brother, Arnold.
As I was researching Arnold, I was surprised to find that he died at a relatively young age compared to his siblings. He was born in 1912 and died in 1929 when he was 17. In comparison, the next ‘shortest’ lifespan was that of his older brother William, who lived to 68.
So why did Arnold die so young?
Luckily, death records for Michigan from that time period were available on Ancestry and one popped up as a possible hint for Arnold. Looking at the record, I knew it was, at the very least, for a relative of mine. The parents for Arnold were correct and the birth date was in alignment with the 1920 census’s rough estimate of Arnold’s age.
And where did he die?
‘The Michigan Farm Colony for Epileptics’ in Indianfield, Tuscola, Michigan.
Cause of death? Epilepsy.
There was my epileptic ancestor. SURPRISE!
While his death record notes that he had been having seizures for 16 years – so he had begun having seizures around the age of one – and mine didn’t start until I was 19, almost 20 years old, it makes me wonder if there was a genetic component to his epilepsy and that genetic segment/component was carried by all or most of his siblings as well – including my great grandmother. If so, that would be a logical reason for why, out of the blue, I began having seizures. It is possible, that that line had a predisposition for seizure disorders and both Arnold and I were the ‘lucky winners’ of that genetic raffle.
A (VERY) BRIEF HISTORY OF EPILEPSY
This surprise, so to speak, has now given me more perspective on my own health and the history of epileptics in general. When Arnold was alive, there were only two known anticonvulsants – potassium bromide and phenobarbital, neither of which were specifically tested as anticonvulsants initially. (Phenobarbital, for the first fifty years of its existence, was commonly used as a sedative – and unfortunately, for euthanasia at times.)
The first AED (antiepileptic drug) was phenytoin, launched in 1938, a good 9 years after Arnold’s death. Phenytoin (AKA Dilantin) was the first drug they put me on to stop my seizures and while it was helpful, it wasn’t good for me long term. So I’m grateful for other AEDs that have been discovered over the years and the opportunities I have had because I can control my seizures with those drugs.
I’m also keenly aware of how epileptics were treated for many decades before AEDs were developed. And the stigmas that surround epilepsy and disabilities even today. In the past, epileptics were essentially cast off from society. As macabre as it seems now, Arnold being sent to farm colony was probably a better outcome than many other people in his situation had. The Michigan Farm Colony for Epileptics wasn’t too far from where his family lived. And it seems that he stayed with his family for a good portion of his childhood.
In contrast, many epileptics were sent to mental institutions or other ‘homes’ and if they had some kind of ability to work, set about do menial labor. However, if a person was deemed ‘disabled’ enough, history has shown that euthanasia was not outside the realm of possibility.
For many years, marriage certificates required applicants to note whether or not they were epileptics. In most cases, if someone was diagnosed as an epileptic, they were banned from getting married.
Even today, while many legal barriers have fallen, social stigmas abound, both here in the US and abroad. I once had a doctor act surprised that I had children and ask whether or not it was ‘safe’ for me to do so. I’ve been told by people that they were surprised to find out that not only did I have my undergraduate degree, but a graduate degree, once they knew I was epileptic.
With that knowledge in mind, part of me wonders if the reason that Arnold was never mentioned by family members was because of the stigma that surrounded having a disabled family member?
Which is a shame – because that is a ‘surprise’ in my family tree that never should have been a surprise in the first place.
Questions or comments about this post? Have any genealogy stories concerning disabled ancestors? Other surprises in the family tree? Curious about the 52 Ancestors in 52 weeks challenge? Let me know in the comments! And if you like what you’ve been seeing on Tenacious Genealogy – please subscribe to our email list. Not only will you stay up to date with the latest blog posts, but you’ll also get freebies such as ‘10 Tips For Starting your Genealogy’ and other fun ‘subscriber-only’ items.