Written by: Dave Neufeld
The day I almost died and living with disabilities [Blog]
tl;dr Some things in life have the capability of crushing you. If you are lucky, you survive and get the chance to live again. If you can, give people with disabilities the chance to show what they can do for your company. If you read this and you think you know someone that could use the encouragement, please share it on.
It was a Saturday night in January 2009. I had just finished another good week at a small software company in Victoria, BC, a smaller Canadian City on the West Coast. The weather was pleasant (by Canadian standards) and my wife and I had settled in to watch a movie in our newly renovated small house. The only bad part of this idyllic scene was that I had been sick most of the day with what I thought was the flu. What a crappy way to spend a Saturday. During the movie, I felt a bit worse and excused myself to go to the washroom.
That memory is the last that I have for much of the next two years. The rest of the story are pieces that I have tried to put together from small snatches of memory I have and based on the stories that others shared with me. That night, after I excused myself and went to the washroom, I vomited and then the room started to spin.
Then I had a full body seizure.
My wife heard the noise and rushed into the bathroom. I cannot imagine the scene that she witnessed. Her husband, who just one minute was making stupid comments about the movie was now flailing out of control. When the seizing stopped, she called 9-11 and I was taken by ambulance to the local hospital.
At the hospital, I was examined. There were no obvious signs of trauma that might have triggered the seizure and nothing that I could recollect from the day that might have hinted at the cause. There was talk of me going home given the lack of other symptoms (this was my first seizure that I had ever had), but luckily my wife insisted that I be kept in for observation. An odd twist of fate in this story is that my wife is a Physician, so that the fact that she had observed enough odd behaviour in her career helped to clarify for the other attending Physicians what she observed and a possible cause. I cannot imagine what might have happened if I had been self-admitted or if the seizure had not been witnessed by someone else. Sometimes you just get lucky.
Once admitted, I continued to have seizures. Further tests were administered and it was not long before the diagnosis was made. I was experiencing Encephalitis ( Encephalitis is an acute inflammation of the brain.Encephalitis is an acute inflammation (swelling) of the brain usually resulting from either a viral infection or due to the body's own immune system mistakenly attacking brain tissue). Via an MRI, the swelling caused by the viral infection could be seen by the Doctors and a course of treatment to fight the infection was started. For three days I moved in and out of consciousness. When I was conscious, I wasn’t necessarily lucid (but that story is for another post) but luckily medication administered aided the body in its fight against the infection in my Brain. At the five day mark, things seem to turn for the better as I stabilized. With the medicine prescribed, the body fought the infection and ultimately defeated it. I was hospitalized for nearly two weeks.
After the initial medical emergency passed, I returned home but to a life that would never be the same. I was on high doses of anti-seizure medication (seizures are a common result of brain damage). Part of my left-temporal lobe was damaged. I was not physically impacted (I maintained my ability to speak and my motor skills were not affected, my speech was the same). To the outside observer, I looked like the old Dave unless you tried to have a conversation with me.
After a relatively short time of recovery I attempted to return to work, but I was no longer able to manage my team of Software Quality Assurance analysts on our project. Even testing software (a complex skill-set requiring use of memory and intuition) was nearly impossible. My ability to control my mood or affect was difficult and I could not adapt socially into my role. When it was clear that I could no longer do my job, I was dismissed.
I didn’t work again for another 3.5 years. I spent those years trying to carve out a piece of my life again. I attended Brain rehab clinics and out-patient services. I attempted re-training (to try and re-acquire marketable skills given my disability). After 2.5 years, I started applying for work locally but the process (hard for anyone unemployed and looking for work) was made difficult by my time absence from the fast-moving technical market. My resume had a glaring hole that people wanted to ask about and given my previous experience hiring, I didn’t know how to approach.
I got my first job again in Summer of 2012 at a small tech startup as a junior QA analyst. It was hard but I gave it my best. After a while, a vacancy opened up and I had the chance to try managing again. Small successes led to more and I eventually had a chance to take on a new role for me of Development Manager. Since that time, I have had the chance to lead another QA Team in a local tech company (a team of 7 full-time and 3 coop QA analysts). I have presented at the local Agile Software Meetup, been present in a number of different software development groups and shared my experience with the CanAssist team up at the University of Victoria.
More important than all of the work, I have had the chance since the injury to become a parent and to experience the joy that children bring to a household (and mess, but hey, the good with the bad). I have had a chance to build a new life, albeit different than the one before and it is good.
This isn’t the whole story, of course, but you have to get back to work, right?
I have summarized my story here, in the venue of LinkedIn (versus Facebook) in order to encourage those in the role of hiring to reconsider how they might give those with disabilities a chance. Missing time in resumes can be there for many reasons, not necessarily nefarious. People being dismissed from jobs may have nothing to do with events under their control. For myself, I had no idea how to explain my absence from the workplace without disclosing my disability and the cause. No one taught me that in ‘resume school’. As the primary screening tool, the resume can cause a hiring team to detect ‘false negatives’, to rule out people because of missing data. Not HR’s fault, but if you have never been through a period like this in your life, you may not naturally empathize either. As someone who interviewed and hired twenty interns/coops over the last 2.5 years, that is always something that I considered as we evaluated candidates. Grades do matter and previous experience does matter but how people approach problems and their determination to overcome adversity is hard to see on a resume.
For those with disabilities, whatever they are, who are attempting to get into or back into the work force after time away, I hope that my story can offer hope. No one knows what the future holds, what you are capable of, or what opportunities will be afforded to you. My only advice (as shitty as it is) is to try and take each day as it comes. Watch for the demon Depresession. Watch a lot of ted-talks on youtube and find a local community of people who you can share your challenges with. Find ways to make today a bit better than yesterday.
If you are supporting someone with a disability, in life or in work, remember the basic human lesson that we cannot truly know what another experiences or how they perceive their struggles. Ask questions, pray for patience and encourage them through your support and love and care.
Finally, and most important, I want to thank my wife (whose name I withhold here to give her a modicum of privacy in an over-connected world). The day of my illness you helped to save my life. In the years that followed, you helped me to recover some part of my humanity and to continue to live a life of meaning. I truly cannot imagine the burden that you have carried, but I am grateful that you choose to be with me. You are an amazing person and I am lucky to have ever met you. Love you.
If you want to randomly keep reading, check out the story of these people.