AVM (Arteriovenous malformation) is an abnormal knot of arteries and veins altering normal oxygen circulation and blood flow. It’s rare, meaning a low rate of general knowledge about the condition exists.
It’s a naturally occurring phenomenon and may cause a sudden brain injury without anticipatory planning. Unplanned effects coming from an AVM to create stroke or brain injury are common. It isn’t affected by food, exercise or toxicities in the body. It’s also unlike Brain Injury from an accident, as it isn’t caused by a sudden impact that occurs to the skull like a fall or car crash. If the AVM ruptures in the brain, it can be the trigger for a brain hemorrhage, stroke or sudden brain damage.
I was lucky enough to meet Rebecca after she messaged me through my Facebook page. She said she loved my positive approach. Those who haven’t suffered the debilitating effects of Brain Injury often assume I was actually the opposite during the worst stages after my accident, complaining too much about my condition after A. I learnt challenges too far after hospital and B. experience unexpected set backs – ‘what is he complaining about again!’ – that is the power of an invisible illness where minimal tailored and structured support exists.
I took her kind words and asked more about her circumstances. This is when I realised I knew nothing about AVM. I interviewed Rebecca to find out more.
She is also from Sydney like myself, and I’m starting to find more silent voices in the society I call home. There are many similar connections by effects to other Brain Injuries but the experiences differ too. That’s why as a writer I’m attracted to personal stories showing the value in respecting lived experiences.
Rebecca told me AVM can develop anywhere in the body, but generally occurs in the Brain or Spine. Symptoms include headaches or seizures, and without prior diagnosis a drastic sudden moment was how Rebecca discovered she had one.
One night she was on a date and started to feel and complain of headaches, so they returned to her home early. Upon returning home she apparently stated ‘oh my head!’ and collapsed on the floor into a seizure.
Her poor date called the ambulance and saved her life!
If she had been home alone, we may not have the luxury of telling her unique story. Her Brain would have swollen without any assistance as she lay on the lounge room floor unconscious. Many can imagine a more dire result.
Rebecca was rushed to emergency at Hornsby Hospital, in Sydney’s north, where they discovered the AVM and quickly transferred her to Royal North Shore Hospital, a larger hospital in the area. She initially had 6 operations to alleviate the pressure and swelling in her brain.
I asked Rebecca what her main issue has been after leaving hospital. She told me something I understand very well but few have understood when I explain it, particularly the second point. Memory and Attention to detail are her main issues and something I experienced myself.
Previously known phone numbers and bank accounts were hard to remember and her work generally requires constant review. This constant review is necessary as brain injury causes functional effects where you understand a concept in a sentence and then glide past grammatical errors on a page like they are not there. It is like your brain understands a sentence and so it uses something similar to assumption that it is written correctly as your eyes glide past. The words may be missing or you’ve made a spelling mistake, but is missed by your own ability to quickly review.
Attention to detail was something I found worse when reviewing my own work, but it made me overly analytical when reading the work of others. I noticed everyone’s continuous mistakes and yet they were often not large enough to make much difference to those who it mattered to. That’s my personal experience and others would find it difficult to complete organisational tasks, not always but just quickly on occasion.
Rebecca is now in a wheelchair but is slowly learning to walk again. Her recovery process is influenced by recovery of the motor skills in her left limbs, but with time and practice she is improving her physical abilities.
She went on to tell me words that rang true with my own experiences, ‘… everyone is different therefore your brain, body and the healing process is different…’ and she continued more truth, ‘I even have days where I have no understanding of what I am feeling myself.’ Brain Injury is learnt as people thrive through lived experiences and minimal guidance can give outsiders a license for ignorance.
The variety of causes and issues doesn’t stop the realities faced. Rebecca has four children and was working in administration while studying criminal law at the time of her accident. These areas require support with abilities to develop new memories or attention to detail – show me a lawyer who succeeds without amazing attention to detail.
Attention to detail was something I tried to explain in this video. This can be an imposing, but simply manageable issue in workplaces. Each individual has varying levels of organising and attention. They should be supported accordingly. It also causes massive external frustration and anger from colleagues that impacts people’s self worth.
AVM is a rare condition and is clearly linked to other mental health challenges like the broad process of disclosure for living with a brain injury or experiencing a stroke. Being healthy doesn’t stop AVM from occurring. What we hope Rebecca’s story can do is to change the social treatment about such lived realities
She ended our interview questions by writing John Lennon’s words, “all you need is love!”
More specific information about AVM can be found by clicking here. https://www.stroke.org/en/about-stroke/types-of-stroke/hemorrhagic-strokes-bleeds/what-is-an-arteriovenous-malformation