EnableMe | enableme - stroke recovery and support

The last thing you ever want to hear is being told that your only child “will be a vegetable or die”.

Yes, that is exactly what my mother was told after I was rushed by ambulance to hospital at 22 years of age. That was 30 years ago (11 December 1991). I remember that morning so vividly – just like it was yesterday. Hard to believe – my long-term memory is not that great but when you experience a trauma so impactful and life changing, I guess no brain injury or deficit can eradicate the events that led to such suffering.

I will try to recall everything that happened on that fateful day. One thing’s for sure, I proved the doctors wrong, to my mother and family’s relief.

Mid 1991, I had graduated from a Diploma of Business in Hospitality Management course in Melbourne. I helped open a brand-new hotel in St Kilda, from the ground up. It was hard work, long hours but exciting. I recall working 12 days straight and the night of the 10 December, caught up with a friend to chill out. We began watching a video, Edward Scissorhands (the name will be relevant later) but we never watched it as I wasn’t feeling great and told my friend I needed to go to bed.

It was my RDO, but I rose early. I think it must have been the excruciating pain in the right side of my head that woke me up. It was no ordinary headache or migraine that I ever experienced before. I felt like someone had taken a drill to my head and was penetrating it deep into my skull.

I began to panic and managed to get down the staircase to reach my mother’s bedroom.

I woke her in distress. She just told me to take a painkiller, which I did. The next thing I recall is vomiting in her bathroom, then collapsing on her bedroom floor. My mother called the neighbor, who called another neighbor, a radiologist, who came in and saw I couldn’t squeeze his hand and could hardly respond. When the ambulance was called, the paramedics thought I had a migraine, but once I reached hospital scans revealed I had a major hemorrhage in the brain (due to a ruptured AVM) and required emergency surgery.

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I remember telling my mum as they wheeled me off that they were going to shave my head. I went into surgery for 9.5 hours.

After the bandages finally came off my head, you could see that only half my head was shaven, the other left shoulder length hair. My head was cut from my forehead all the way to the back, with 80 large staples holding it in place. I actually resembled Edward Scissorhands. I could not look at my reflection.

Aside from the way I looked, my head was tight and uncomfortable. I was on huge doses of medication, and I was now paralysed down the left side of my body from my head down to my toes. I couldn’t talk properly, eat, dress or walk to the bathroom. l also lost my left peripheral vision (Homonymous hemianopia) from both eyes!

I didn’t know what hit me in the early hours, as I was too groggy and shocked to understand what had happened and the consequences. Once the days passed and I was stuck in a wheelchair, facing the aftermath, my world had basically crumbled. I wished I were dead. No one knew what I was going through or what I was feeling inside. I just wanted my life back and I knew I had to get out of there.

I did leave but it wasn’t homebound unfortunately. I was sent to a rehabilitation centre. Just when I thought it couldn’t get any drearier. There was no Neuro ward or other young people. I was placed in the amputee ward, sharing with several elderly women. The only positives were they did help me learn to walk and talk again and learn other basic tasks through occupational therapy. I spent my 23rd birthday and New Year’s Eve in there and couldn’t wait to leave.

When I did return home, it wasn’t easy. I had stairs to manage and was only able to walk one foot at a time.

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I wasn’t allowed to drive, and depression set in again.

In March 1992 I had to fly to USA to undergo further treatment (Gamma Knife Radiosurgery). This was to treat the remaining AVM that could not be removed at the time of my surgery. Not a pleasant memory. Continual angiograms followed.

As time moved on, it was obvious I needed more rehab to progress. Therefore, I joined a gym and worked out with a personal trainer. This helped me improve my strength and fitness much more rapidly. I commenced walking on the beach every morning with my mother. Taking photos, despite my visual impairment, became a passion.

My return to the workforce was slow and limited. I had attempted voluntary work to ease myself back slowly.

In 1998, I finally moved out of home and secured a permanent Reception job that I enjoyed. Unfortunately, it was also the time I collapsed at work and rushed by ambulance to hospital. I was diagnosed with seizures because of scar tissue from my brain surgery. I have been on several medications since that year and have experienced various types of seizures. My work took another break as my health took precedence yet again.

It is said that everything happens in life for a reason. I could never understand why bad things happen at all to good people?! However, there are lessons learned: such as the fragility of life, the power of strength and resilience. Looking back, there were many moments when I was angry and thought “why did this happen to me?” “It’s not fair!” Somehow I found the courage to carry on and say to myself “I’m not going to give in. I am a fighter. I can get through this. I will get through this!” I worked hard every day. I am not saying it was easy and that I didn’t have setbacks, but it was small steps.

Unfortunately, not all my friends stuck by me through my surgery and rehabilitation. The loss of these friendships and missing out on what should’ve been the best years of my life left a huge void. Upsetting as it was, nevertheless, it only made me stronger. I knew that I would be okay on my own. I didn’t need fake friendships – those that were only there for the good times but disappeared as soon as things got tough.

Today I’m blessed to have a small handful of close friends and family who have been amazing, and their friendships mean so much. I am especially grateful to them for their unconditional love and support. For the many hurdles I have had to overcome both physically and mentally.

Six months ago, I faced another health challenge when I was diagnosed with breast cancer. Although it was a difficult time, I knew I had my people around me. After having experienced a stroke, I also knew I could deal with just about anything that confronted me. I pulled out the fighter in me yet again and faced each step head on. Perhaps if the incident on 11 December 1991 had not occurred, the way I would have handled this cancer diagnosis would have been totally different?! I would not have had the experience of trauma and life/death experience to draw upon – so may not have handled any of the steps as well as I did.

There is no point in hypotheticals. What happened that day and every day after has shaped me into the person I have become. I may appear to be fully recovered – if you met me for the first time and didn’t hear my story, you would not even know I suffered a major stroke. Yes, I have come a long way after 30 years. There are still some physical and psychological setbacks. My vision will never return to normal, but I have learned to compensate the best I can. I have regular migraines, brain fog, anxiety, occasional panic attacks and seizures. I tire easily and my memory can play up on me sometimes.

Hearing or reading other people’s stroke stories and/or meeting people after suffering from stroke really resonates with me. I can’t help but feel emotional and connected with them. One because it stirs up everything inside me yet again and two, I want to throw my arms around them and tell them it’s going to get better – I know it will. I want to show them how and tell them not to listen to negativity and not to give in or give up!

Some people breeze through life without any distress in the world. They are the lucky ones. However, life wasn’t meant to be easy. As they say, you only get one chance to live your life. So, if you’re faced with life threatening incidents / diseases, you need to do everything you can to find that inner strength and fight to survive. Once you do, live it out the best you possibly can and cherish each moment you have.

Always remember you are stronger than you think you are!

Warrior

Remind yourself of what you’ve been able to overcome.
All the times you felt like you weren’t going to make it through, you proved yourself wrong.

You are more powerful than you think!

Thank you for sharing Lisa, your story is very inspiring to me, I’m 4 years in this Xmas. The title of your story really resonates with me as I facilitate a weekly meet up group of stroke survivors, we are called The Kings Park Warriors. I can’t wait to tell them your story of resilience.

Hi Gregg

Thank you for your kind words. It has taken me 30 years to really share my story - I must say it was quite difficult to write and read.

How are you feeling now? Sounds like your group has an appropriate name too. What do you discuss?

I have never really dealt with it nor had a support group. The Stroke Foundation didn’t exist back then.

Take care of yourself and feel free to ask me anything if you need.

Warm regards

Lisa

Hi Lisa,

I feel ok, every No and then I get everything right and I feel almost my ‘old self’ again.

We discuss the challenges and successes of the previous week mainly, individual progress report on whatever we might be working on, I.e. NDIS application or getting back to work etc..

But if there is a new member the focus is usually on them as they always have lots of questions/concerns.

Hi Lisa. I've suffered basal ganglia haemorrhage stroke last Feb21. 40yr old, a mother of 2, work as an engineer here in Malaysia with German company.I was fighting again depression, out of focus in my recovery path & unclear rehabilitation guide in the beginning. I am now still with sevre spasticity arm and leg. i thought like losing hope until i see your sharing today. i hope to endure future as strong as you are. Next week i'm going to visit a rehab specialist, to see if botox can ease the spasticity so that i can still improve my functions through intense rehab. i still dream of being a successful career woman, a mother and enjoy life as it is.. with positivity.

Hi Lisa, thank you for sharing your story. My partner suffered a bilateral thalamic ischemic stroke in July this year. The experts told us to say our goodbyes as he wasn't going to "wake up". Guess what - my warrior partner proved the experts wrong. Together we have worked hard everyday doing physio and occupational therapy. He came home in a wheelchair and is now walking independently around the house. He has double vision, balance issues, memory loss and suffers bouts of depression, but together we are tackling each of these issues. You are right about finding out who your real friends are! You have certainly done it the hard way compared to what is available for stroke sufferers today. You should be very proud of what you have achieved, you are my inspiration. You are a true warrior!!!

Hi Robyn, how is your partner going with his rehab?