Cognitive Impairment: Advice For Dealing With This Life Changing Event

My top piece of advice in this instance, NEVER give up on yourself!

I feel like I’ve been neglecting my website, that includes anyone who follows this blog. For that, I do apologise. Unfortunately, it’s not entirely within my control. 

Nevertheless, I also know it is far from the truth.

In fact, I’ve been working tirelessly behind the scenes, trying to change the look and feel of my website. Not as easy as you’d imagine given the (continued) impaired state of my brain since brain surgery #6.

Goal setting and challenges keep me going

I challenged myself to do a post a day for Hydrocephalus awareness month in September. I achieved this goal. Woohoo! 

I’m also trying to do regular posts on my social media pages: Facebook and Instagram. Feel free to follow any of these accounts, if you’d like to keep up with my journey. Or, if you’re in need of validation, advice or wanting to know what obstacles to avoid!

I will tell you this; trying to do a blog post while experiencing executive dysfunction is not an easy task. I’m not going to sugarcoat it; it has not been easy! To be completely honest, it’s been extremely painful. I have struggled physically, mentally, and cognitively. Not to mention dealing with a severe case of brain fog and insomnia.

The joys of living with a brain injury, she says sarcastically!

I truly do feel like I’ve been incarcerated

This image is no exaggeration! 

I honestly don’t know how else to explain the way my brain feels. Let’s face it; we all need our brain to function daily. There’s no getting away from it. It’s especially challenging (for me) when I do tasks that are cognitively demanding. My workaround for this; do less and pace myself.

However, I am working on improving the situation for myself (progress is already evident to me, albeit at a snails pace), and I look forward to sharing the details here.

Let’s bring you up to speed

The condensed version of what I’ve been doing to keep busy and help myself.

Context for later: I volunteered to be part of a group tasked with looking at diversity and inclusion at the company I worked for. It seemed like the perfect opportunity for me to effect change for myself, and others. But, I struggled cognitively, unsure of the reason why (at the time). Google searches sent me down a rabbit hole of discovery, landing on brain injury. So,

• Last year (April 2023), realising the seriousness of my situation, I went to see my GP to get booked off in order to focus on my recovery. I asked her for a referral to the brain injury rehabilitation unit (BIRU) at the Princess Alexandra Hospital, Brisbane, Australia. I knew I needed help dealing with the aftermath of my injury, i.e; the effects of the Haemorrhage during my repeat ETV surgery. At that stage, I’d had no formal diagnosis (yet). Unfortunately, asking for that referral proved to be a *BIG mistake!

Let’s just say their services were not for me. Disappointing as it is. And, I’m not the only one who has had a negative experience whilst undergoing brain injury rehab with them.

*I simply do not have the words in me, now, to say how truly disappointing the whole experience has been. (When it ceases to be a trigger, maybe I’ll find it within me to do a post). 

The system is broken…

The one positive I take from the whole experience: It has boosted me into DIY mode, which is SO much like my old self! More importantly, it put fire in my belly to be part of effecting change, with regards to societal understanding, and treatment and/or support of people living with brain injury. To ensure I achieve this goal, I have been part of a few research groups and continue to seek out any others where I can contribute my lived experience to date, to help others like me, and those who are yet to walk this journey. (I have no doubt there will be others).

• The day of my final consult, of my first block of therapy, I was given the task of working on increasing my capacity in front of the computer. At that stage I couldn’t do more than 2 hours. I’m up to 5 to 6 hours now. Also, I was told to look for volunteer opportunities to help with my social and communication skills, which appeared to have been impacted, to a degree. Not such an easy task! With the next block of therapy set to start in November, after putting the above into practice. Not having done brain injury rehab before, for obvious reasons, I was unaware of the process and just decided to go with it. However, it explained the reason for my not being able to return to work this year, due to the extended duration of therapy.

My approach to increasing my capacity was to treat it like going to work every day by doing the following:

1. Tackle some home/family admin. The family budget is still a major challenge for me!
2. Continue my awareness and advocacy on social media. The fact that I’m passionate about it helps. It’s getting easier…

Patience is not everyone’s virtue

On 16 April 2024, immediately after my (final) consult, I attended a meeting where I was let go “with immediate effect”. There’s nothing quite like hearing those gut-wrenching words…, especially not given the situation I was in, or after being with the company since July 2012!

There have been some good lessons learnt from this experience, which I’ll in turn use to help anyone else who might find themselves in the same situation.

DID YOU KNOW?

Many people end up losing their job following a brain injury! While here are those who have no other choice but to cease work, especially if they are a danger to themselves and/or others, there are many who could function well enough with reasonable adjustments, and/or time to recover.

There’ll be a future blog post on how I dealt with, and approached, the situation. But, this is not as high on my To-Do list, nor is it a priority.

Life carries on, NO more flying BELOW the radar.

• I decided to expand my Hydrocephalus awareness and advocacy to include brain injury as well. More importantly, following the disappointing end to my 20+ year career as an IT professional, I decided to start posting on LinkedIn. The way I see it, change is needed in the corporate arena if this is going to work. Honestly, given my experience, I firmly believe diversity and inclusion (D&I) need to be more than just buzzwords. Don’t you agree? It shouldn’t selective or opt in. but rather, a ALL OR NOTHING approach.

*The context mentioned above being one of the main reasons for posting on LinkedIn. Since I started the D&I journey, I figured I may as well continue…

“Be the change that you wish to see in the world.”

Mahatma Gandhi

• I also started exploring alternative therapies: Hyperbaric oxygen therapy (HBOT) and Red Light Therapy. [More on this in a future post]. 

Spoiler alert! I’ll be exploring this in detail and am currently waiting on an order of a medical device, which I’ll trial and test over the coming months. 

My hope: A better functioning brain (cognitively), and the “cloud of fog” lifted enough to leave me feeling like a better version of my current self. You’ll just have to wait for the end result, like me!

• I’ve also been working with a job coach and the team at Spinal Cord Injuries Australia as part of their EmployAbility program. We’ve been focused on my transferable skills and exploring my options for work going forward…(This too is a future blog post: How do you get back into the workforce?) So many things to consider!

PS. I set myself a goal while doing rehab: To get back to work in 2025. Whether this goal is realistic, or not, time will tell. Despite what anyone else thinks, or says, I’m not ready to call time on myself, just yet! Just because others have chosen to do so does not mean I have to…

“Life is not about how many times you fall down. It’s about how many times you get back up.”

― Jaime Escalante ―

Remaining hopeful

I’ve also applied for a few roles that will be coming up in the new year so no pressure to start work now. 

In fact, for the first time since leaving South Africa in February 2012, I will be going back home to see my parents and family this holiday season. A long overdue visit and, hopefully, a soothing of the soul!

As always, I aim to share my experiences and lessons learnt – watch this space! For anyone in the same boat, rest assured, there’ll be something for you to take away from it all.

Lastly, I need YOUR help: While you’re at it, please share my posts with your own networks, and help me spread awareness, especially on LinkedIn. You never know who else is “flying below the radar” like I used to. Something tells me there are a few people who might need to read what I have to say. Thank you💙

Disclaimer: Advice provided on this website should not be used for medical purposes or self-diagnosis. Always consult your doctor.