From IT professional to brain injury survivor 

From IT professional to brain injury survivor 

I have worked in IT for more than 20 years of my life. After starting my career as a secretary, I soon moved into IT and learnt as much as I could, on the job. It was a field I felt drawn to. Over the years, I have successfully completed quite a few formal training courses, and received certifications along the way. I flourished and excelled in ways that surprised even me, at times. I loved it! 

Helping people has always been at the core of what I wanted to do. It still is…

Seeing the look on people’s faces, and hearing the gratitude in their voices, after fixing “simple” (to me) technical issues, brought great satisfaction. I moved from desktop and server support to various other positions, building on my skillset, and transforming myself into a good all-rounder.

At the age of 29, mid-career, I was diagnosed with Hydrocephalus, an incurable condition with brain surgery being the only available treatment option. Either a shunt is inserted into the ventricles in your brain and lead to a different body part, to drain Cerebrospinal Fluid (CSF) or, a hole is made in the 3rd ventricle in your brain (Endoscopic Third ventriculostomy – ETV), removing the reliance on a shunt. Not everyone is a candidate for ETVs. I have both.

Unfortunately, these treatment options can, and do, fail at any time. I had my first brain surgery a week after diagnosis, bounced back and carried on with life. As one does. I simply did not let it define, or stop me. 

At the time, I was thankful to have had a manager who was supportive in ways I still thank him for, to this day. (Yes, we stay connected! The good ones always do…). He was part of my journey for 4 of the surgeries I would have to go through. I have since moved between 3 different countries and he has retired. That does not mean I do not get the occasional “Hi C. How are you?motivational quote or joke.

He was the kind of manager who took time every morning to chat with each of his team members. Taking a personal interest in each of our lives and knowing our significant others, and children, by name. He and his wife checked in on me, during my recovery; be it at home, or at the hospital. Sent get well flowers and told me to put my health first, before work. Someone who took the load off when I had specialist appointments, or had no sick leave left. And he never held any of it against me or kept track of it.

The next time I needed surgery, he went above and beyond as I endured 3 ops over 3 days, while 5 and a half months pregnant. He arranged for special sick leave so that my normal leave would be untouched. It allowed me to focus on healing and recovery, no matter the length of time. And, when I returned to work, he gave me the time and understanding to get back to the hardworking team member, he knew me to be. Not focusing too heavily on any difficulties I was having, but rather recommending I “be like a duck” instead. 

Human. Empathetic. Compassionate. And just a major source of support during a truly challenging time. 

Let’s face it, you never know when life decides to hand you “lemons.” The most any employee can hope for in that situation, is to have an understanding and supportive employer, to help ease the burden.

I survived all of that, and excelled even further in my career, despite the journey thus far. 

But, I digress… 

CYBERSECURITY AWARENESS AND TRAINING

This is where I found my niche.

Using the knowledge I had working in various roles, my creative skills, along with my knack for simplifying a message, through communication and collaboration, I finally felt like I was making a difference. I never dreamed that one day it could all change. An instant, dragged out over a course of 2 years, to be exact. 

One defining brain surgery out of 7, since my diagnosis, left its mark on me. A mark that I would never have predicted, despite having signed the consent forms. A bleed during surgery #6 (cause unknown), left me with damage I would only piece together “fully”, over a 2-year period. As the full effects started manifesting itself, I felt myself slipping away. Powerless to stop any of it…

In hindsight, the damage had already been done years before, but I was resilient enough to carry on with life. Although, while life was happening, it was all unbeknownst to me.

Looking back now, I did not fair too badly, despite the “damage under the hood”. But, as far as I am concerned, the brain bleed was the cherry on the cake. Sealing my fate. 

Brain injury is inevitable (said no one ever!)

You see, what neurosurgeons do not explain, is the full impact of living with Hydrocephalus and having brain surgery. The scale of the damage blood on the brain has, is catastrophic, even in the mildest of instances. It would seem obvious but, unless someone utters those words, you simply don’t interpret it that way. I sure did not. 

Since Hydrocephalus is an incurable condition, you also do not have any choice in the matter when it comes to having brain surgery, or not. More importantly, just because you have had surgery does not mean you will not need to go through it again. No cure, remember?

My research has led me to an understanding I wish I had sooner. It would not have changed the outcome, but it certainly would have made things easier to deal with.

At the time, I thought my recovery was just going slow. I told my neurosurgeon at our 6-week post-op consult; “I’m struggling”. Left with a slight cognitive and speech impairment, due to Anomic Aphasia, words no longer came easily.

Defining exactly what that meant, was just as much of a challenge. Something that “seemed” to fall on deaf ears. I do not think he ignored me…I suppose it was simply a case of me being unable to define exactly how, or what, I was struggling with. 

I still do…

Two years after my surgery, I found myself uttering those same words to him as I asked; “Would you support my case for disability?” A decision I had not reached lightly, especially since I knew it “might” mean the end of the career I had worked so hard to build. The full meaning flooding me like a tsunami, and ironically, one I was powerless to stop. His response; “Yes, of course. But…you are so young. What would you do with all that free time…?

Not a helpful response, I admit. I think about it from time to time and wonder; Will I ever be me again? What if things improve? What if I gain back what I have lost cognitively? What if this is just a “moment” in time? Surely the strategies I’ve implemented will be enough to see me through!

So many “What ifs?”, with no answers…

THE FACT IS

Brain injury is invisible and therefore, you would never know it just by looking at someone. Also, not all brain injuries are the same. How people are affected, the deficits they are left with, are as unique to them, as they are. The one commonality they “might” share, is the way they sustained their injury.

THE REALITY OF MY SITUATION

Life has changed, and become a daily struggle, as every aspect of my life has been affected. However, I had no control over it before, and I do not now. Within an instant, I have gone from being an IT professional, to being a brain injury survivor. I made the decision to book myself off from work last year, in the hope of finding help, to navigate life with a brain injury. And, somehow, work within my new norm…

HOLDING ON TO HOPE

I am nowhere near ready to give up on myself, something I told my employer. I know my worth and I know what I have to offer as an employee. I’m hopeful that with neurodivergence becoming a buzz word in the corporate arena, I would find my place again in the working world. And, I know there are more companies showing support of, and employing, people with disabilities. Hopefully, their intentions are honourable, and it is not just lip service, a facade, or a tick box they hope to fill…

In the grand scheme of life, these things happen. It’s what you do after, that matters most.

My story is not unique. Well, only to me. However, there are countless people across the world, who are living with a brain injury. Some are more severe than others. Some are more outwardly visible. And some, look as “normal” as the person next to you.

If the threat landscape of life has taught me anything, it would be to NOT underestimate (or minimise), the likelihood of this happening to you one day…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

2 Comments

  • Anonymous

    May 14, 2024 at 7:55 am Reply

    Inspiring and moving Celeste

  • Jennifer

    May 14, 2024 at 5:04 am Reply

    Hi hope you are well. Love reading about your experiences. We normally take things for granted. Live life one day at a time. Jenny

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