I have lived more of my life as a survivor of stroke than not

By Dianne Speed

It was 26th July 1988, eighteen hours after the birth of my daughter, when I suffered a massive stroke that affected my whole right side. They found a DVT in my right lower leg two weeks after the massive stroke, but the cause of my stroke has never been found.

In 1988 there was not the understanding of young stroke as there is today. We now know that about 24 percent of first-ever strokes occurred in people aged 54 years and under.

After my stroke I spent about 4 months in hospital. There is a lot I can’t remember, it’s pretty much a blur.

Treatment back then was very different, and after stroke care for young people was limited. I remember in the first few days my neurologist, gynaecologist and allied heath staff trying to work out the best course of treatment and care for me as a patient, and new mother.

The stroke left me with issues walking, impacted cognitive function, feeling, taste, fatigue and memory loss.

After about two weeks, I began twice daily heparin needles and blood tests. I was doing rehab at Geelong Hospital and then eventually as an outpatient 2-4 times a week, for many months. An OT helped me with daily tasks.

Throughout this time, I was breastfeeding my daughter, but it was the only real contact that I had with her until I could look after her safely. It was heartbreaking.

My family tried to help, and my mother was amazing, but it was hard for all of us. It was not the life that I thought that I would have, and my stroke impacted my marriage which was one the factors to us splitting up.

Many of my recovery milestones coincided with my daughters. We learned how to walk and talk together. She was there for most of my therapy sessions, and had the benefit of watching me, so she reached some of her developmental milestones early.

We are lucky that we had this time, because in her early months I feel like I missed the opportunity to properly bond with her.

I still feel like guilty that I wasn’t the mum that I wanted to be. I found the journey of parenthood hard. I missed being able to fully participate in things that were important to her as a little girl. I was unable to put her hair up, tie her shoelaces or play how I wanted. I feel these little ‘cuts’ in our relationship impacted our bond as mother and daughter. It is my deepest regret.

When I had my stroke there was no Stroke Foundation. If there had been, I think that the early days may have been very different. I would have connected with services and peers. I lived many years not knowing other young people with lived experience of stroke. It's wonderful to see the way the community now pulls together and supports each other.

As I have gotten older, I’m feeling the effects of the stroke more. I have pain in my left hand from overuse, and I have had a left knee replacement from putting all my weight on my left leg when walking. I get more headaches and migraines and I feel that I am slowing down, it takes me longer to do daily activities like dressing and showering. I am only in my 60s, but I feel much older.

But I am a survivor. And I think this quote encapsulates my experience.

“I’m not the same soul as I once was. A lot has changed. A lot had to change. So, you shouldn’t expect out of me what I embodied in the past. For that part of me no longer exists.”