Hope

Its 2 years since I’ve written. My progress had stopped, I was exhausted and I accepted that my recovery journey had come to an end. I stopped trying to get better, made peace with where I was at. After all, I had already recovered far more than I was told I ever would. At the same time I lost my drive to write.

Recently I reconnected with a dear friend who I haven’t spoken to in 25 years. He reminded me that writing is therapeutic. He also shared stories of stroke recovery in a friend and told me that my story wasn’t over yet. That I need to leave no stone unturned. Have no regrets.

So here I am writing again, and feeling motivated again to give recovery all I’ve got.

Back to where I left off ….

As the days rolled by, my mind became clearer and my body became ever so slightly stronger. With a clearer mind came far too much time for thinking. Thinking about my condition, and wondering what my future would hold.

For the 2 months since my stroke, my support network had been nothing but positive. I was always reassured that I was going to make a full recovery. I had heard stories of others who had beaten the odds and walked out of hospital. These stories of recovery and words of encouragement were necessary to give me hope, especially when so many in the medical world had given me none. Without hope there is no reason to fight. My family and friends were going to make sure I had every reason to fight.

My family needed to keep hope alive for themselves as much as for me. No parent wants to see their child forced to live like this. No husband wants to see his life partner like this. And so on.They were heartbroken for me. And we were all grieving.

At the time I saw all this encouragement as people assuming everything would turn out fine. I got a bit overwhelmed by everyone’s expectations. I started to feel if I didn’t recover it was somehow my fault. That I didn’t work hard enough or want it enough. 

They were trying so hard to keep me positive that it left no room for my fears. Would they still want me if I didn’t recover? As soon as I wanted to talk about my fears, the conversation was quickly steered toward a pep talk. Nobody wanted me to go down a rabbit hole of doubt and depression. Let’s face it, just weeks earlier I was begging them to let me die.

I think we often assume that hope and fear are mutually exclusive. That to remain hopeful we need to eradicate fear. I now understand that they go hand in hand. If we hope that something will happen, we simultaneously fear that it won’t. 

I was scared and I needed to talk about my fears. To process them. To hear someone tell me that even if I didn’t recover, things would be ok. That I was loved, we would make it work. That even if things weren’t ok, it was ok.

My brother Pete was visiting from Brisbane. He came to spend the day with me at the hospital. We talked a lot about my fears. I didn’t record the details of our conversation but I remember feeling so grateful to have been heard. He had acknowledged my fear. It was normal, it was ok, as long as it didn’t get in the way of pushing on.

I had seen myself in a mirror just once since my stroke. I’m not going to lie, it was tough. I’d never been particularly focused on my appearance, but it was very strange to not recognise the person looking back at me. I was ashamed and embarrassed of the way I looked. On an intellectual level I knew I had nothing to be ashamed of or embarrassed about. It was not my fault. But those feelings were real.

My trache was coming out the following day and I wanted to see it before it did. I asked Courtney (Pete’s wife and my sister-in-law extraordinaire) to show it to me in the mirror. I specified that I didn’t want to see my face. I told Courtney that I was nervous about having my trache out. I was scared I wouldn’t be able to breathe, I was scared I’d need to have it re-inserted. She pampered me to relax me – she gives the best face and head massages.

For the 9 weeks in ICU, I’d had a catheter in. I was starting to have infections too frequently so the medical staff decided to take it out. The stroke ward decided to put me in a nappy! Yep an adult size, green nappy! When a nurse came breezing in, saying ‘It’s time to change your nappy’, I was gutted. It’s not something you expect to hear at 36.

Monday rolled around and suddenly it was time for the removal of my trachy. The prospect of having it out was both exciting and terrifying in equal parts. On the plus side, removing the trache was a huge step forward. It was a sign that I was much better than I had been. I was now able to maintain my own airway and protect my lungs from unwanted fluid. It also meant that I could be considered for the rehabilitation ward.

The time had come. I became even more nervous when the ICU crash team turned up! Apparently it’s just procedure. They need to be present – just in case. Removal was very quick and painless. It felt like a non-event. A big heavy tape dressing was placed over the hole to make stop air escaping.

Now that I was breathing through my nose and mouth, air was passing through my vocal cords and it was possible to make sounds.  I made a phone call home to tell the kids I loved them. They couldn’t hear my whisper but I had made progress.

Will and Katie came at night to watch a movie with me. I spoke a couple of words – hello, love you. Will showed me his school uniform and bag. I was worried about all the kids starting at new schools without their mum to get them ready and walk them in on the first day. It was my job to prepare them, to comfort them, to tell them everything would be ok. And to make matters worse they were split between 2 schools. In Queensland they had all been together at the one school. My heart was breaking again. 

Fraser came in to watch a movie with me the following day. He was lying in bed with me having a cuddle. My sister wrote “He is stroking her face, while she watches him – it is so gorgeous to watch their special bond”.

The consultant from ICU came to check on me. He said he didn’t need to see me again unless I misbehaved and he hoped I didn’t. I said ‘yes’ then ‘thanks’

12 thoughts on “Hope

  1. OMG I remember that special nappy when I first saw you. Your mother asked me not to cry when seeing you. There was nothing to cry about you looked beautiful.

  2. Steph
    You are inspiring. As I get (so much) older, I too have some mobility issues so I just think about you & how well you are doing & I tell myself to “get over it.” I know Paul & fam have had a visit with you………I was so pleased about that. Sending special thoughts………..

  3. I was gravely ill with Influenza A in 2016 at the very end of my second pregnancy and, at one point, was not expected to survive. I was ventilated for 3 weeks in ICU although my entire stay in ICU lasted 6 weeks followed by five weeks in Medical.

    There are so many parts of this email that resonate with me, particularly the anxiety around the removal of the trache and it being a non event in the end. As a nurse myself I find the language of calling an adult incontinence pad a ‘nappy’ degrading and better words could have and should have been chosen. I lost 23kg in three weeks (primarily muscle) meaning I had no strength even to hold up my own head and had to learn to walk again. I also had paralysis of one side of my vocal cords and needed intensive speech therapy to regain my swallow and speech over and beyond my entire hospital stay.

    I’ve enjoyed reading this email and hearing from someone that has had a similar medical stay although for a different health event. Wishing you good health and strength which clearly you’ve already shown ☺️

  4. “They were trying so hard to keep me positive that it left no room for my fears”. Thank you Steph for reminding me as a therapist that hope and fear can co-exist and that both need to be equally validated.

  5. I’ve never met you personally Stephanie, but I’ve followed all your earlier blogs. I’m glad you are back writing. Your story always touched my heart. You are incredibly brave and strong to have gone through everything you have and you never gave up. I was excited to open my email today to see you’ve started writing again. You are an amazing, strong incredible woman that I will continue to be touched by your story of what real hero’s are made off.
    Regards
    Angie

  6. I just came across your blog and I, too, had a stroke recently! Mine was in February of 2021. I was just 49 at the time and it was completely unexpected. I’m still trying to recover, actually. I should have died. I went to Madonna (in the United States, that’s where I’m from) for rehab and it’s been many months of recovery since I finally came home from Madonna in July of 2021… I think that’s right, anyway. The passing of time is difficult for me to grasp in both concept and reality.

    Anyway, i recently started blogging again, too, some… time ago, and I used to write, too, and even had a blog or two — before my stroke! Now trying to type is a challenge, not to mention the techy side of things. So Stephanie, it’s nice to meet you! Jolyn Johnston 🇺🇸🙂

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