I’m sitting in the park watching my Labrador, Delilah sniff around in the long grass. She needed a walk so badly, letting me know by licking me on the face until I got the message.
I’m unable to go far, I’m too lightheaded so we walk a few metres up the road to the vacant lot on the corner and I let her off the lead. She’s in heaven, I feel faint.
I rest my head in my hands, my brain heavy and throbbing. I’ve been in bed for days with low blood pressure and haven’t seen friends in months, I’ve no energy for talking, with the lack of oxygen in my brain, keeping in touch is too hard.
I sit here thinking, how did my world get so small? The radius of my existence has shrunk to less than the hundred metres it takes to walk from my house to this park.
Delilah is happily exploring the park smells, hunting for discarded apple cores and pizza boxes, I watch her absently, pondering how time moves so slowly when ill, when all I want is for time to speed up and to get well quicker.
A lady beetle lands on my wrist, I haven’t seen one in months, Hello lady beetle. It’s the most exciting thing that’s happened all day. This is what my life has come to. Sitting in a vacant plot of land wishing time to pass. I want the energy to be living my old life again, I want to work, I want to see my friends again, I want to be involved in LIFE. Each day seems like I’m slipping further and further from reality.
I thought back to last week, when I’d had my final laser session with Emily at the clinic. I’d completed six months of cold laser therapy for chronic brain inflammation. My final scans showed an incredible reduction of inflammation and cerebral edema.
Read about my cold laser treatment here: It’s All In Your Head
Emily reminded me of how far I’d come. At my first consultation she and another clinician, Sharon told me, ‘We’d never seen someone as young and beautiful in such a serious condition, we were so concerned and determined to get you back’.
After months of tedious treatment, I felt ready to get back on my feet and put this chapter behind me. I joyfully thought, I’m back now…and I did a little happy dance inside. Yet when I returned home and looked in the mirror, I saw lifeless eyes staring back at me.
I don’t feel like I’m back, I’ve finished laser, that would remove the inflammation, aren’t I meant to be cured now? I felt spaced out, disconnected from the world.
I struggled to communicate, my family constantly guessing at what I’m thinking and finishing my sentences. I have no ability to drive, work or look after myself. For the first time, I actually wondered if this is what it means to be disabled.
The elation of completing laser treatment, a mountain to climb when I first started has been quickly replaced with a fear of the next chapter. I text my laser buddy Serena, I’m scared, laser is finished I don’t know what to do now, I don’t have a plan. I had grown comfortable in my daily routine of eat, laser, rest, laser, eat, sleep,
Last weekend, I made a rare trip to the beach. I was desperate for some human interaction, even if I couldn’t join in the conversation, I wanted to, at least, BE THERE – that way I can pretend I’m participating in the world.
I bumped into my friend Laney, who’s taking photos of the sunrise, seagulls and the swimmers. She’s the sort of person you’d call a ray of sunshine, effervescently positive in any circumstance, even now while she’s undergoing breast cancer treatment.
I hadn’t seen her since I started laser, we were both busy with our respective treatment plans. Laney spots me through the lens and sparks, Hey Sarah, how are you? You’re looking GREAT- you look…. hmmm… you look, less PUFFY, yes that’s what it is. I couldn’t put a finger on it, at first, but now I see it! Your face is less swollen! This is amazing! Yah I’m so happy for you!
I think about this. I take a selfie to see if Laney is right. I think yes, less puffy. I hadn’t noticed, the changes were so gradual, the last few months have been a blur. Inflammation causes fluid build up, especially around my face and neck near my brain so being less puffy is a good sign.
The lady beetle stays on my arm a little longer before flying off into the spring breeze. I shiver, since the heatstroke incident at a Gold Coast triathlon my body finds it hard to adjust to temperature changes. The sun is bright, I shield my eyes, the world seems so bright, big and loud.
I want to go back to the safety of my bedroom. I call Delilah over, she bounds back to me, grinning gives me a big lick on the face. I wonder if she’s thinking that she wants to go for a longer walk. Does she know I’m not well?
Even less puffy looking, I don’t recognise myself. My body and brain feel like a tangle of spaghetti, a mess of disconnected wires and I can’t imagine how I’ll untangle and straighten out the pieces again to make SARAH.
I doubt if I can recover from this brain injury, I don’t know what to do now, it is overwhelming and unknown to me. I want to find someone who can explain, guide me to wellness and answer my burning question: What does long term brain inflammation do to the brain? Until now, no one has told me what to expect, I’m not sure if my brain can recover.
A week later, I sit at my computer staring at my inbox. The words swim around on the screen, I don’t get on the computer much, the cognitive energy required to send a simple email hurts my brain. I’m hoping there are some replies to a bunch of emails I sent out last week.
I discovered these medical people called neuropsychologists who assess brain function after injury or trauma. I’m wondering if this test can tell me what the effect of chronic inflammation has been on my brain and even establish a baseline.
I recall what I’d read in Dr Norman Doidge, The Brain’s Way Of Healing. After an initial injury, there’s a cascade of changes in the brain, parts of the brain can become dormant from inactivity and begin to forget how to work, like an unused limb on a stroke patient who starts to use their other limb for everything and the danger being the unused limb begins a process of learnt non-use, which is how the use it or lose it concept is so important after injury.
I’m worried learnt non-use is happening to me, I spend all day in bed, only getting up sometimes to eat, walk Delilah to the corner block. There are many skills I’ve been unable to do over the past year, like using my working, walking, driving, writing and speaking.
So many thoughts running around in my head: My brain is wasting away, I’m turning into a space cadet. The inflammation is reduced, but now there’s another step needed, I don’t know what that is, but I need to do something about this. I’m worried I’ll stay like this forever, dependant on my parents for everything, spending my days sitting around in a vacant plot watching Delilah sniff around.
I’ve research this assessment – it sounds extensive, takes a whole day to assess physical, intelligence, thinking skills, concentration, attention, memory, emotions, personality, language and problem-solving skills. I like the sound of that because I struggle with every single one of those skills, I don’t feel like myself and I’m curious about what an assessment might suggest in terms of rehabilitation.
I click on the first email.
Reply 1: Unfortunately I am fully booked at the moment and will not have any appointments available until March 2019.
Ok, that’s nine months away, the learnt non-use will be even worse by then. I hit, DELETE.
Reply 2: Unfortunately, Dr so-and-so doesn’t have any availability until May.
That’s even longer wait, DELETE.
Reply 3: I do not think a Neuropsych assessment is going to lead to a diagnosis, let alone assist you in managing your symptoms.
I pause my hand on the DELETE button, re-reading the message, they don’t even want to see me, angry I hit the DELETE button harder.
Another doctor kindly replies by a phone call: your situation is really sad, I really feel for you Sarah but I don’t know if this test will help you. I’ll be honest with you, this test is really expensive, I don’t recommend going ahead – save your money.
I slam the laptop shut, frustrated, it’s taken all my energy to send out all these emails and no one has offered anything. I wonder, how do I fall into such a hole where no one wants to deal with me.
I begin to lose faith that there are medical people out there to help me. Laser therapy was a great first step and now I’m lost in this void. I begin to doubt myself, maybe I just need more rest, more time.
Yet my mind keeps returning to those words learnt non-use, I’m frightened this is happening to me, everyday the clock’s ticking. I know something’s not right, my brain’s not working, I have to keep listening to that inner knowing and keep searching for a way to get back to reality.
How do I heal a broken brain?
… continued next week
Thanks for listening