I’m put on hold while the receptionist at the language rehabilitation centre transfers me to a speech pathologist. I’m nervous, I’m not sure I can manage this conversation. I want to heal the injury to my brain but twelve months of chronic inflammation is beginning to take its toll on my speaking skills and along with it my confidence in communicating.

I think about the irony of this situation. I am enquiring about language rehabilitation on the phone. Why doesn’t this company have an email address I can contact? Or an online chat box? Don’t they realise how difficult this is?

The hold music plays in the background, irritating my frazzled brain. I turn it down to a whisper. Over the last year, my brain has become progressively worse at processing sounds. It now feels like I have a pinball machine inside my skull, every sound makes the metal ball bounce around my skull, ding ding ding, flashing lights.  

As I wait on the line, I wonder: How did this happen to me? Why is my brain shutting down? Is it going to keep getting worse?

I recall my life before that dramatic day when I had heatstroke which turned into a brain injury. I had built my livelihood around my communication skills as a marketing and public relations manager. My previous client was an international aviation company, and I released communications directly to governments and organisations around the world.

Now that seems like another life. I think back to last week, having coffee with my friends. I smile, and drink my tea as if I’m following the conversation, but really all that’s happening is the pinball machine is going ding, ding, ding. I notice Kerry’s wearing a new skirt and I attempt to join the conversation. I blurt out: SKIRT I like your KERRY. We all laugh, it’s funny. Inside, I’m embarrassed and worry there’s something seriously wrong with me.

Later at home while doing the laundry, I tell my parents, I’m gonna put my clothes in the dishwasher. My brain is not cooperating with me. I’m saying things I don’t want to say, I’m frightened I’ll say something stupid, I’m frightened I’m becoming stupid!

My thoughts are interrupted by the call being transferred and by an eloquently spoken Vanessa.

Instantly overwhelmed, I choke on my words. Hi, I have a brain injury and I can’t talk very well. I want to say more, but I can’t find the words. I’m worried I’ll say wrong words like dishwashers and skirts. I’m embarrassed and I feel as if my head is somehow locked inside.

I feel at once as if I’m back in hospital, in the neurological ward. Pounding  headache, brain going to explode, unable to speak and I remember how much that scared me. I wanted desperately to tell the neurologist how my pounding head felt. It felt as though my brain was going to explode out through my eye balls, and the left side of my brain was threatening to break my skull. All I could say to the neurologist was I have a headache and cry like a baby who can’t communicate, in pain and frustration.

The MRI scan that was performed at the hospital didn’t show any damage to my language centre, however I can’t talk and that’s a fact. I think, Does this mean I’m losing my intelligence? Will people think I’m stupid if I can’t talk and communicate properly? Am I gonna be like this forever? I need to get some help, and I need it soon before this gets any worse. I can’t imagine working as a public relations manager again. How can I get help when I can’t communicate what I’m experiencing? It’s such a trap for people with brain injury.

I don’t cry on the phone to Vanessa, I need to keep my shit together and find a way out of this deadly loop I’ve found myself in. I’ve researched this program from the work of Dr Menz and this Australian provider can give me the miracle I need to get my life back.

Vanessa, sensing my distress, intuitively slows down and explains how the program works: an hour on the computer per day to specifically retrain the language part of the brain.

Already, this is the longest phone call I’ve had since the heatstroke one year ago. I need to stop talking and rest, my sizzled brain cells are failing me. I’ve been talking for two minutes. I squeeze out one more question from my tired brain:  I find it difficult to talk on the phone – can we chat on email?

Before my brain falls over in a complete heap, I consider this program. I hope the laser treatment I had in the last six months has stabilised my brain tissue enough to have it ready to learn, rewire lost connections. If not, this program will be a waste of time. Regaining my language skills won’t cure my brain injury, yet it might be a start. I think,  Is this the beginning of getting my brain back?

***

I’m at my computer scrolling through an email trail between Vanessa and myself.  We’ve pinged back and forth more than twenty times already. I want to get started on rehabilitation, but I need to make sure this is the right program for me. I’ve got a load of questions for Vanessa but I struggle to get my brain to cooperate.

I find if I type one question at a time, then wait for Vanessa’s response, I can manage – anything more overloads my brain, and the pinball machine goes off, ding, ding, ding. So far, the information we’ve shared could be a ten minute conversation yet it’s taken two days to get through a few questions. I read again my initial questions to Vanessa about the program. She explains,This course was designed by neuroscientists in America for children with learning difficulties. It’s been successfully teaching children for over thirty years. Cautiously, I ask how it might help me recover from my brain injury.

Vanessa continues, Fast ForWord will improve your skills on how you remember verbal instructions, tasks, comprehension, reading and writing.

That covers a few of my concerns, but it’s less than what I hoped this program could do for me. I have so many other symptoms from this brain injury. I remember how earlier, after washing up, I stood with a handful of cutlery staring at the drawer for ten minutes, unable to sort the knives, forks and spoons. Every time I tried to match a fork with a fork, the pinball bounced around in my skull, ding ding ding. I tried again, but the ball bounced around louder and louder and there was nothing I could do. There was no way I could will my brain to work and in the end I dumped all the cutlery in one pile. It was such a simple task. I was frustrated with myself, with my brain.

How will I get through life if I can’t even sort my cutlery?

Looking at Vanessa’s email, I pause.  I need rehabilitation for my entire brain, not just language. I email: Does the course help with other areas of the brain? Does it address other areas of the brain such as motor control or visual memory? Sometimes my hands get crossed over, sometimes my right hand will do what my left hand wants to do.

Vanessa replies: Sarah, the program wasn’t designed for motor control and not specifically for visual memory. We have had anecdotal feedback however,  from students who couldn’t ride a bike or swing on a swing prior to the program and afterwards these skills were improved.

There’s a small possibility this may help other parts of my brain but there’s no guarantee. It certainly doesn’t cover my long list of disabilities, yet it’s a start. I’m running out of options. I recall that at the hospital they didn’t offer me any type of rehabilitation, so I have to make a decision for myself. I want to get well so badly. I read the email about the cost, and take a deep breath, as it’s about the same cost as a triathlon bike. I’ve already sold two to pay for my laser treatment and have kept my last bike for when I recover.

I continue to read Vanessa’s instructions. We’ll start you off with three months daily training on the computer and then reassess. Some students take a year of training to improve their skills. Three months is a long time to trial this type of rehabilitation.

An hour a day is a huge commitment considering my day-to-day life is such a challenge. While experiencing extreme fatigue and low blood pressure, this program will be a big undertaking for me. I wonder whether it will be worth it and whether I am ready.

Yet the ache inside reminds me of the reality of my current circumstances. My brain injury has turned me into a hermit unable to spend much time with people and unable to communicate.

I think back to my life before injury. I was constantly surrounded by people, morning bike rides and coffees and working in the local community. Social isolation has been one of the worst fall outs from this experience. I think about how important language is in how we connect with each other. It’s a way of sharing, it gives life meaning, and without it a part of my soul is missing.

It was cruel, how this all played out, how suddenly my life was ripped away from me and I ended up on the edge of my social world. Thinking like this, I know I’m feeling sorry for myself and I stop this line of thought before it gets away from me. The fact is my life changed in the moment I crossed that finish line and now there’s something I can do about it. The pinball in my brain is tired of bouncing around, it just wants to stop and sleep for eternity. Relearning my language skills will require energy that I don’t currently have. But I lie down and sleep, then nothing will change.

I manage to enrol, pay the fee and I type one more email to Vanessa,I’ve signed up for the program, would you let me know when I can start. I’m ready.

I am excited but guarded about what this next chapter might bring, and there is no guarantee – it’s a three month experiment. If I regain my language skills, I have the chance to reconnect with friends and maybe even work in my business again. Yet I can’t help but wonder, Will regaining my language skills start the healing process in other parts of my brain too? Will this be the beginning of my journey back to reality?

I dream of my life getting back to normal but then a voice in my head wonders: If this experiment fails, will I stay like this forever, locked inside my head? No one can answer any of my questions, so I’m left thinking: I can only try.


Thanks for listening

Mermaid tail

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