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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
Established Member

This share of yours today means a lot for me personally, Jeff.

Microsoft

Thanks for sharing your story, Jeff. I remember when this all happened and you were telling me about some of your challenges. Still, I found it amazing that you would reach out to me when things were happening in Atlanta, and you not only remembered but cared enough that my mother lived nearby, and if you could help her out in any way. Challenges with memory or not, you've always been a super considerate and caring individual, and I appreciate you and your friendship. I am also glad to learn that you're in a place where you can share your experiences and learnings in this way. Kudos to you, buddy.

 

That aside, I found #4 on the list of things there to be a great point. Where technology can be helpful in many instances, it doesn't (yet today at least) help solve all problems. I think, perhaps, that's the important bit especially for us who work in technology; to recognize that reality and also not in assuming that technology can solve all problems.

Microsoft

Agree, @T. Robert Nishi - that's truly the beauty of community and it's always awesome to see folks like @jeffstokes going above and beyond to help others out of the kindness of their hearts! Definitely an amazing #HumanofIT indeed- kudos to you Jeff!

Senior Member

@ShonaBang Thanks, I was trying to figure out the right/best way to reply to these responses :)

 

Thanks @T. Robert Nishi  for your kind words here. Very much appreciated.

 

and @David Taylor, nice catching up with you again on LinkedIn the other day!


Jeff

Microsoft

@jeffstokes You're the best.  I missing working with you and sincerely appreciate you sharing these sentiments in such a transparent way.  Wishing you all the best!  Thank you for the tips and suggestions, I'll take them to heart.

@jeffstokes  Very well said and what an incredible testimony. Your mindset and actions in the time of crisis show your passion. I am a heavy user of OneNote as well. I love the immersive reader.  One App I would also call out is Office Lens it's a great companion tool for OneNote and Outlook.  I want to say Thank You for your willingness to be transparent and authentic.  Transparency and authenticity are rare these days and they will truly make you prosperous in whatever goals you set.

Microsoft

Totally agree, @Matt - Office Lens is truly a lifesaver for many of us who don't have a printer/scanner at home too. Would highly recommend folks to check it out! It's free too.

Occasional Visitor

Thank you for sharing such intimate details of your life, Jeff.  I've been in IT since before there was a Windows or even a Microsoft.  But I've lived with a debilitating genetic disorder for even longer.  It's been hard at times to just work through it, hang on and keep pushing.  After reading your comments I now realize how small my problems are - and have always been - by comparison.  I'm ashamed for privately feeling sorry for myself at times.  After 45 years in the industry that has given me a prosperous and adventurous career you've given me a renewed sense of hope and vitality.  Please know that from now on not a single day will pass without my thinking of you and asking God's blessings on you and those you love.  You are worthy my friend.

Senior Member

@P_Standing Thank you for your comment. It really means a lot to me. I'm humbled, really.

 

Thank you,

jeff

Occasional Visitor

@jeffstokes  it looks like you are appreciated among your peers like @T. Robert Nishi , @ShonaBang and @David Taylor.  They have some great advice to add to yours.  I too rely heavily on Outlook, and Dragon Professional, and I have a helper.  His name is Ruffus.  This amazing little guy has a vocabulary of more than 40 words.  He can dial 911, get the phone, get the tablet, get the medicine, and so much more.  Now, if I can just get him to write code.  RuffusRuffus

 

 

 

Senior Member

Dog are amazing. This is Thor here. My marriage didn't survive my head trauma sadly, but I've got a partner in crime still. :)

 

I just try to give back. I didn't have an easy time, growing up, school, etc. So, I know it's not always easy for people. So I try to help them out. Wish I could do more than this post, but the positive reinforcement from you and others tells me I'm on the right track.  :)

 

Jeff

thor.jpg

Visitor

I got this web page from my dad, hoping it might help knowing others have the same issues.

I had an Amygdalohippocampectomy on my left side, 5 years ago next month. I have experienced some of the same troubles you have, I have been less than a mile from home and can't remember how to get home.

I typically can't remember my kids names for 1 or 2 minutes, the oldest is 30 and youngest 21.

There are days when I can't complete a sentence.

Up to, and thru the surgery I thought everything was going to be fixed on the other side. 5 months later performance reviews said I needed improvement.

I was the senior engineer in my department never having had troubles with keeping up. Finally when I couldn't add a 20% tip to the check at a restaurant I knew something was wrong.

I spent 8 months, 60 hours a week in rehab, 4 appointments a week, another one every other week.

The occupational therapist said I would never return to work and no chance I would ever be an engineer again, but I made it.... sort of.

I am not as good as I use to be, and those working with me the closest have to tolerate unique idiosyncrasies..

For those of you who work with people like us, Thank You for your patience and tolerance.

 

I use OneNote for everything, I continue to try and get project's I work on to incorporate OneNote but they won't, I can't figure out why? Engineer's?

One trouble I have is remembering where I put something in OneNote. I have folders and pages organized to the nth degree, I continuously reorganize them trying to figure out a better system, haven't found one yet.

I use the copy link to page, but if I rearrange pages that function can fail. 

I can work on a page, leave it for another page for 5 minutes and can't remember where it was. i usually get back to it after 2 or 3 minutes but several times a day it can take 10 minutes, once in a while I won't find it till the next day, I hate the oh! that's were I put it moments.

I recently learned about the section group function, maybe it will help.

I used a tablet in the past that converted hand writing to text, I use this on my tablet at home.

That worked pretty good for notes in a meeting.

I was just getting the hang of it when the company wouldn't allow me to make it my primary computer or connect it to it a laptop, company policy.

I have been using the "Send to OneNote" function in Outlook for meeting notes. This is just for me and not shared.

It helps, but note taking is the issue, are they clear and will I understand later?

I am confident there are several people who have wonder what is wrong with me when I stop the meeting for 2 or 3 minutes to make sure I got notes written correctly. You know what silence on a conference call for 2 or 3 minutes is like :\

I stopped that after 3 or 4 times because it was to awkward.

I set meeting reminders for 2 hours in front of meetings and then change the time each time that alarm goes off, like a count down to meetings, it has worked pretty good so far, but i don't have lots of meetings, 4 or 5 a week

I has taken me an hour and half to write this and it's getting late.

i am going to look into Office lens and Dragon Professional to see if they will help.

This is the first time, ever, I have written on a board. I apologize if i didn't follow the rules correctly.

Rex

 

 

Microsoft

Wow thank you for sharing your story as well, @LSTMND - I'm so glad to see that @jeffstokes 's article has such far-reaching impact and helped encourage you to share as well. Kudos on your bravery and persistence to keep pushing through, and leveraging tech tools to help you manage it. You've got this! Hope to see you around the Humans of IT community and you're welcome to share your thoughts, stories and ideas anytime - we'd love to learn from you as well :) 

Senior Member

@LSTMND thank you for commenting here, I continue to be humbled by the feedback and thoughts of others who are struggling with this type of issue. I hope over time technology can further innovate to help us remember when we don't.