My stroke happened in 1993, when I was 22 years old. At the time I had just experienced severe pre-eclampsia. Two weeks prior to my stroke, I had lost my five month old baby, whom I was pregnant with.

My husband at the time, and I buried her. And then we went away for a weekend because it was so overwhelming. It was during that time when I was walking down the street that I experienced a massive headache.

I was very young and nobody thought that I could possibly have had a stroke. So it was over 24 hours later that I was actually given treatment to dissolve the clot in my brain stem.

I was totally locked in when I came out of ICU. I went to communicate and that was a blink, yes or no. It was an ongoing process of me needing to have therapy, physiotherapy and speech therapy. I couldn't swallow. So that meant eating was out. But I was so aware of who I was, where I was, what had happened. I had a clear memory of my life lived prior. I had clear terror.

By the time I left rehab, which was about two and a half months after my stroke, I was sort of the walking dead. I was looking very well, sort of talking. I was sort of balancing and I was sort of improving and then retreating in despair that I was so misunderstood. So there were lots of "sort of". And that was a baseline.

Being from Regional Victoria all my treatment had happened in Melbourne. So I was discharged home to a country town where services weren't flourishing. But I did get access to speech therapy and physiotherapy, which was at the hospital. However, if I turned up with another person and it was apparent that I had struggles with communication, the communication would be between the other person and the facilitator of the therapy. So I was very discouraged by that, of being ignored.

Dealing with overwhelming grief

The grief was completely overwhelming. One way to deal with the grief was to live and continue to visualise myself in the future and anticipating a happy, whole, fulfilled being. Even though I continued to have challenge after challenge put in front of me. I would tell myself "Well, I'm here. I've woken up today and what's going to greet me?". I stayed as current as I could be with current affairs. And participating, gaining strength from where I could, from who I could.

I look back and wonder how I went at times because the pain of disconnection was so overwhelming. It was a very isolating and terrifying time. I felt so responsible that I was making life difficult for everyone, especially my ex-husband who was doing his absolute best to support me.

Two years after my stroke, I had my son. Communication wise, I was still very much affected. It felt like I was always answering everybody's questions about how I was. I found it very difficult to say "Hey, I know there's all the physical things that are going on, but I'm really worried because I'm aware that I've had trauma".

I was trying to stay focused, calm, and present for this little baby that I was growing inside. I felt very responsible that  I didn't want to inflict my trauma on to my baby. But was I able to communicate it? No.

Depression was not something that was ever acknowledged. At that time, the way to go about getting someone back on board with depression was to pull yourself up and get on with it. So did I ever think that I was depressed? No. I thought that I just didn't live a free and easy life. That's how I viewed myself. And in my situation around me. I never considered myself as depressed but I possibly was.

I felt extreme grief and sadness. Not only at physically what was happening to me, but at the realisation that nobody knew what had gone on for me.

The feeling of what it was like to almost die, what that had on me, what it was like for nobody to acknowledge it. I didn't have the chance to express what it was like to stand at my baby's grave.

All the unseen feelings and grief I knew that I carried and I wasn't able to express that added to the devastation.

And so when I was told "You're doing a good job or you've done well", I had a mismatch of that. Can people tell me I'm doing well when I've got all these things that nobody sees?

Working my way through

So I had to become very optimistic about what the future might hold for me.

I was very young and I just wanted to have a future. I didn't want to identify with not having a fulfilled future. And so when I was told I needed to set goals again it was bewildering for me. I didn't know how I was supposed to set realistic goals with all this background of grief. But I gave it my best shot because if that's what they wanted me to do, I'll do it.

And even though it felt incongruent with where I was at, I was going to do it. So I felt a real pressure to just try. So I just tried to keep up. I went to whatever appointment I was supposed to go to. I turned up, again mostly with devastation that I'm not being really seen for who I am.

What advice would you give other young survivors of stroke?

Recognise the enormity of what's going on, to love yourself and to reach out to places offering help.

The help that you feel you need. There's a lot of places that offer help, but finding those bits that reach you, that's the next level.

There's an enormous amount of knocking on the wrong doors. But really get in touch with yourself and your gut, your instinct.

A poem by Sue Bowden

There is not much left to one’s integrity
When my bum is being wiped
Or when being fed a spoonful of weetbix
A sneeze propels the mushy contents
From inside my mouth
Onto the unfortunate nurse sitting in front of me
Yet if I become sad during the course of the day
If I come forth and sob out of desperation
No one gets it
My emotions even have a label now
It’s called emotional lability
Laughing sends something happy
Coursing through my bruised being
So I’m confused when all this emotional stuff becomes a big deal
I've never done this before
Had a stroke
Lost a baby
When my mind is screaming for a tight hug
Which I cannot physically respond to
But if a hug were given all the angst of the moment would melt away and I would feel peace
Instead each day brings physical work
Punishment it feels like
For putting others in this position
The need for them to endure their own reactions
When they are subjected to my broken body, mind and soul
Where’s the soul therapy on my neatly typed timetable of weeks work
While practicalities like my bowel movements, my period or my speech
Or my response to any demand that comes my way
I know will be a discussion point at the nurses station
Who’s taking care of my dignity, my integrity, of my soul.

From the pillow, Survivor mode podcast series

Host: Sue Bowden with David Cumming

Sue Bowden was living a full life. She was happily married, pregnant with her first child and training to be a nurse. However, she could sense that something wasn’t quite right. She’d had issues with her health and after visiting her GP her concerns were dismissed. And she was told this is just what comes with pregnancy.  Little did she know the events over the next month would change her life.  

Over 3 episodes Sue is joined with David Cumming, life coach and counsellor. Sue and David are great friends. Walking and talking together to stay emotionally and physically well. Sue opens up to David about her stroke experience, from being dismissed by her doctor to near death altered states to learning to communicate again. As well as reflecting on what she learnt throughout her stroke experience and the importance of surrounding yourself with support.

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