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September 16, 2020 | By Dominic McDonald

At the mature age of 19, I decided I needed a sabbatical to escape the stress of my first year at University. It was to be a European adventure, sailing along the Mediterranean, exploring the coastline, meeting new people, understanding different cultures and eagerly tasting amazing food. I might even learn to sail, as I was to accompany a family from Sydney, tutor their children and help where I could on the boat, during a year of sailing. I never learnt how to sail, however I did ‘acquire’ some life lessons from a rather memorable Albanian mussel.

My story is rather unique in being young, sick and alone in a foreign country—presenting neurological symptoms with no diagnosis and a rapid exacerbation over a matter of days. On a journey of self-discovery, I lost myself and contact with my loved ones in just a 32-hour ferry ride from Venice to Greece. I was left with the belief that I would die in a strange and isolating hospital, which I later learned was Patras, located in rural Greece. The trauma of those first days and the subsequent four weeks in a hospital in Athens, were the start of my battle with autoimmune encephalitis. It’s a battle I continue eight years later, one that has significantly changed the course of my life. 

The treatment and diagnosis of such an unusual condition in Greece was quite an ordeal, where specialists assumed the worst, treating it as a likely ‘drug-induced’ psychosis, which significantly hindered both proper treatment and the ability to return home. It was by a miracle that a neurologist from North Shore, Dr. John Parratt, was able to make contact and provide a possible diagnosis over the phone, allowing medical evacuation to Sydney (the first and hopefully not the last time I fly business), where I was treated for autoimmune encephalitis at Royal North Shore. I later discovered I had been admitted in Patras, presenting in a highly distressed state, as the illness quickly took hold and I dramatically lost consciousness. Without Dr. Parratt’s intervention, I probably wouldn’t have survived. I am so incredibly grateful he got me home and continues to manage my fluctuating condition. I have learnt the critical need for understanding distressed patients with neurological symptoms and the importance of early diagnosis and treatment of neurological conditions.

My diagnosis with a rare form of autoimmune encephalitis in extreme circumstances and the prolonged nature of my acquired brain injury—that includes seven separate acute episodes of encephalitis since 2012—have taught me that being a medical anomaly can pose difficulties. More importantly, for better or worse a brain injury changes your conscious state, and therefore shifts your perspective and understanding of the world. I try to see it as life with a new lens. These are my three life lessons, ones that I now use as a framework for life with an acquired brain injury.

Discover your ‘anchor point’ and lock it in your mind.

relapse neurology wardSince my first acute episode in 2012, it has been so important to have a clearly defined timeline with an endpoint, during each relapse. An anchor point set to bring back the mind whenever it drifts too far. Settling an overstimulated mind is challenging, and settling an overstimulated mind with a severe neurological inflammation brought on by encephalitis can be nearly impossible. An anchor point establishes clear parameters for the brain and mind. It is a point of clarity and certainty when the world seems completely foreign and you are full of confusion, stress and unknowns. During each episode, my anchor point may shift, depending on context and circumstances, giving me a point of reference when I haven’t slept for weeks and have lost consciousness. It helps to focus, settle the brain and emphasise a more present mind. Importantly, I never drift all the way back to the hospital ward of Patras in 2012, but I remain present with a known anchor.

A clear event for me is April 2019, my most recent acute episode. Unfortunately, it was my fourth acute episode in less than two years, an incredibly traumatic period, easily the worst period of my life. A period I didn’t think I could survive (as I would drift away at times) I kept returning to my anchor point as the one certainty in my life at the time. It can be enough to settle the panic, give myself security and help motivate me. It has been over a year since my last acute episode, and if I were to get sick again I would fix again to my anchor point, just as I did after my last episode.

Smile.

It is difficult to know when you are through the worst of a brain injury, or experienced its lowest point. The prolonged severity of any brain injury confuses the journey of recovery. A smile is the best starting point, even when you feel you have nothing to smile about, because it has the power to generate positive energy and a presence of mind that seems too difficult. The transition from patient to survivor for any brain injury is arduous, unstable and incredibly isolating, but a smile can empower an individual through this transient period and help share the burden. A smile in the face adversity gives you a resilience to the fight, and presence of mind that can find enjoyment through the trauma. Not necessarily enjoying your life or life circumstances, but finding enjoyment in any small interaction.

Learn to Sail.

Dominic McDonaldI set out on a journey, with the goal ‘learn to sail,’ and be part of a crew in an Atlantic crossing. Instead, I have learnt to sail the fluctuations of a brain injury, crossing a new ocean with a new crew of specialists, family and friends. Along the way I have discovered new emotions, new moods, incredible highs built on the waves of hope and the unbearable lows in the face of another acute ‘storm.’

The extreme waves of emotions and fatigue add such volatility to everyday life, that even planning a routine is incredibly difficult. I have been propelled into an ocean of complete unknowns, with more volatile waters and severe weather, and after so many years of navigating these fluctuations, my journey became more and more isolating. I felt I was alone with no direction, and no way to navigate myself out of the storm. I find the enduring isolation years after the initial event to be the most traumatic impact of a brain injury, because eventually your support crew continues with their own lives and you are left alone, unequipped to navigate yourself. 

I had my first relapse in 2015, three years after my first episode, since then I have experienced more frequent and severe episodes, with four episodes between December 2017 and April 2019. Each acute episode can be weeks in hospital with complete loss of consciousness and memory gaps. My condition had become so unstable with no time for recovery between the waves of each episode, that I had completely forgotten how to sail the fluctuations of my condition. I felt hostage to my illness, its unknowns, uncertainties and instabilities and, after a number of horrific years I forgot my anchor point, I couldn’t smile and found it incredibly difficult to find purpose in my life outside of my illness. I had lost the ability to sail through the fluctuations, bunker down knowing conditions would settle, and there would be days ahead for easy sailing. 

Just when I had nearly lost hope, I had a new friend come aboard: Captain, a two-year-old black Labrador Retriever, who has had guide dog training and is a qualified therapy dog. Captain has been the friend and the help I didn’t know I needed! I was determined to find a way through this, but couldn’t continue alone. Captain has been an amazing crew mate, always eager for walks and swims, and through his eagerness, I am beginning to find more of a routine and purpose. He has been instrumental in changing the tides.

It hasn’t been all smooth sailing, I still get overwhelmed by everyday life, but together we have more good days than ever before. Our relationship gives a sense that finally momentum is shifting and we are doing all we can to capture this change and enjoy the periods of easy sailing. From my experience, brain injuries create an immense separation at a number of levels: all you can do is try your best to navigate each wave, each storm, enjoy the good days and remember one small change can break that separation.

There is still a gap between what I can do and what I want to do. Living my life with the knowledge of these three lessons makes everyday life more enjoyable and gives me hope that one day this gap will begin to fade.

In summary, it can be incredibly difficult to quantify the initial damage and consequences of any brain injury from minor to severe. To then quantify its impacts years after the initial episode are nearly impossible. All I know is, no matter the severity of the injury there is a monumental shift in the person’s life, such a dramatic shift that creates a seemingly insurmountable gap to life before and life after.

I now know more about my brain, its function and its limitations, I know this brain is capable, I just need more people to take the time to understand, And then remember I cannot be held to the standard of a healthy brain despite appearances. I hope that all survivors of acquired brain injuries have the opportunity to live the life they intended, not defined by compromise, and the capacity to support the reablement of those who are unable to do so.

 

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International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


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