[Guest blog] What I Learnt While Not Remembering: Technology and its use in Traumatic Brain Injury

Published May 04 2020 12:52 PM 5,121 Views
Senior Member

This post was written by community member Jeff Stokes as part of our Humans of IT Guest Blogger series. Read on to learn about his journey to recovery from a traumatic brain injury, living with memory loss and getting back on his feet. 

 

Meet Jeff Stokes.

 

Jeff Stokes shares his story about being an IT Pro living with memory loss.Jeff Stokes shares his story about being an IT Pro living with memory loss.

 

This is his story:

 

In February 2015, I was working in the IT department at a prestigious hedge fund in Connecticut, writing a book on deploying Windows, all the while being a father, husband, and active public speaker and blogger. While going to work one morning, I slipped and woke up with the back of my head resting against a concrete curb, in a puddle of now-melting ice and snow. Needless to say this incident completely changed things for me in a flash.

 

I lost my sense of taste and smell, had severe headaches, couldn't remember things (to the point I had to use a GPS to take my children to school a mile away), had trouble completing sentences, got angry for no reason at times, experienced several TIA's (micro-strokes) - the list goes on. 

 

This has a pretty significant impact on work. I had just accepted a role to move from my then-current job to come back to Microsoft in a role focused on Azure on Stream Analytics. So I started my new, remote role with a memory so bad I couldn't recall the meeting topic I was participating in at times. It was an... interesting life for a while, to say the least.

 

Some of the things I learnt while going through this are probably valuable lessons for others either going through a similar situation or supporting someone who is going through it as well. Not every solution works for everyone, but I think some of these are pretty widely applicable.

 

One axiom that is a cornerstone of all my experiences is this:

You are living in a stream of consciousness where no memory is guaranteed to survive.

 

With that in mind I'm going to cover a few principles, then we'll discuss the actual technology that can help empower that particular principle:

 

1) Always take notes

It may seem horribly obvious and basic, but when you have the potential to forget literally anything, this is something that is key. If you aren't taking notes in a meeting, chances are you won't recall the meeting, or some important detail. Having others take notes for you and sending meeting minutes may seem like a good way forward, but there'll inevitably be nuances in the meeting missed in this that will turn up later as missing for you. Recording the meeting can help here, but you must get the other attendees' permission first.

 

OneNote is my favorite notetaking software. To give an example of the power of OneNote, when I was in Microsoft's field engineering group doing slow boot/slow logon work, our engineers kept a OneNote of all OSes impacted, hotfixes relevant, how to trace/debug/troubleshoot, how to fix, how to write reports, etc. for 300+ engineers, accessible worldwide.

 

One limitation for this scenario is that it doesn't do so well with audio>text conversion. For that I'd recommend looking at the Echo Smartpen (which has OneNote integration) or even Dragon Dictate.

 

2) Make using a calendar a habit

You are less likely to forget a meeting if it's in your calendar for the day. I found it helped to have a view of my calendar on a secondary monitor along with Outlook tasks. When you create meetings, include all relevant details. What topics you'll discuss, links to backdrop information if appropriate, a few sentences that describe why the meeting is happening, are all great ways to not join a meeting and asking "What are we here to talk about, sorry, I forgot?"

 

Outlook, of course, is the gold standard for this. Google calendar is OK as well, but personally, I find some of the navigation in it clumsy at times.

 

3) Keep a log of how YOU are doing

I’ve never been a big journal/diary person, so this one was hard for me. But documenting how YOU are doing. How YOU are feeling. How YOU are coping, is very important. You will, on occasion, feel like you’ve made no progress in recovery for the last year. You will have setbacks where it feels like you’ve lost IQ points since waking in the morning. You may get emotional for no reason - angry, sad, depressed, happy etc. That said, it is important to keep yourself sane, and to know “I started back there. This is what that was like. I am headed forward, and recovery will be better than where I am coming from.” You have to be resilient in this, even if it’s hard sometimes. Especially when it's difficult. 

 

I learned back when I was a child that the trick to life isn’t necessarily luck, or experience, or expertise, or who you know, but really, the advantage you can build and use is perseverance: Try, try, try. Eventually you’ll make progress. You’ll learn from trying. You’ll get back up and try again. And you’ll learn more. Eventually, you’ll be much more likely to succeed. You can’t learn from your failed attempts if you can’t remember them, so the diary/log helps.

 

4) Have a helper

Since your memory has a higher probability of being incomplete, the next important tip is to have a helper. Preferably one without a brain injury who can help you get organized and keep you on task. They don’t have to be a personal administrative assistant. This can be a friend, a co-worker, spouse/partner, etc.

 

This is probably the single place where technology failed me personally. It does not help you to take notes, have a calendar, and all these other ideas, if at the end of the day you cannot remember to check them. If you don’t remember you are using OneNote as your note repository, you’ll end up with random OneNote notebooks, notepad.txt files, sticky notes, jotted illegible notes on notebooks in the house, snippets in Visual Studio Code (which I love, by the way), NotePad ++, emails sent to yourself, etc.

 

You need someone or something to actively help you remember things:

  • This application is your source of truth
  • That application is your note repository
  • And this application is where people communicate with you

All the popular voice assistants available to us have one thing in common: They do not bug you. If I forget I am using Cortana to organize my day, which means forgetting to place notes, schedules, reminders, etc. into it, then it has failed as a personal assistant.

 

A person with transient memory problems needs something that can notice “Hey, you haven’t checked your schedule today and it’s 1 PM now.” Personal assistant devices currently require you to start the conversation in my experience in most cases. If you don’t remember Cortana exists, how would you know to ask it where you need to be at 2:30 on Thursday?

 

Thank you for reading this. I hope that it can help those struggling with TBI as well as give some insight into what this means to those caregivers, coworkers and loved ones who are supporting people on this journey. Did you find this helpful? Please let me know, and best of luck. You got this!


#HumansofIT

#LifeStories

 

14 Comments
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