My stroke is the worst thing that has ever happened to many members of my family and me. My beautiful sister-in-law lost her dear Mum suddenly after complications arose from fairly routine surgery. And my Dad lost his Mum in a terrible accident when he was still a boy. Other than that my family had cruised through life pretty unaffected by tragedy.
My stay in ICU should have been nothing short of a nightmare. Don’t get me wrong, many aspects of it were awful. But overall my memories of this period are overwhelmingly positive. The people around me, who went above and beyond the call of duty, made sure I was comfortable, secure, relaxed and happy as much as I could be.
A member of my family was with me round the clock. Mum and Dad left their home in Brisbane to be here for me, Steve and the kids. They provided the comfort that only parents can. Those of you that know my Dad, know what a calming influence he has on those around him. Dad doesn’t need to fill the silence with words. I would often drift off to sleep when Dad visited because I knew he was there if I needed someone, but at the same time he never expected anything of me. I didn’t need to pretend I was happy if I was having a bad day. When I was awake he would read to me or play music for me.
Mum probably had to deal with more of the emotional stuff than anyone else. She knows when I’m sad or stressed. I can’t hide it from her and when she asks if I’m OK, I burst into tears. She would just hold my hand, stroke my face, wipe my dribble, and speak words of encouragement to me.
Then there was my sister Ali. She was THE ROCK. Ali is a very strong person who protects her family like a lioness. She always bundled in to ICU full of energy, with plenty of stories to tell. She’d constantly do laps of my bed making sure I was comfortable. Ali is a straight shooter – you never need to wonder what she’s thinking. When it came to my care, Ali was never scared to confront doctors and nurses. We relied on her a lot to be the driving force behind my recovery. She organised team meetings, and was always pushing for more therapy. I always had fun during her visits. We laughed a lot!
Ali and Damo took my kids to their farm near the beach for a week toward the end of January. A week of horse riding, swimming, snorkelling, feeding sting rays and fishing with their cousins, gave them a chance to be carefree kids again.
When Ali and Damo brought the kids up to see me after their week away, they couldn’t believe how much I had improved. I was so excited to see the kids and they kept me busy with all their stories. Damo burst into tears. He and Ali said I looked so much more like myself. Ali wrote:
“Her right eye is much more focused, she’s smiling more symmetrically, her head movement is so good. She’s looking around at the kids. Moving arm in at elbow. Rising right shoulder, squeezing right hand tightly. Shaking her head for ‘no’. Moving big toe on right foot. Trying very hard to move left but nothing. She was puckering up to kiss the kids – they thought it was very cute. Mouth is opening 1.5cm.”
My brother was down from Brisbane with his family for several weeks. He has a very high pressure job, but when the suit is off, he reverts to my 18 year old drinking buddy. The speech therapist had left me a heap of exercises to do with my lips in preparation for attempting speech when I would get rid of my trachy. These sheets had pictures on them. The first time he saw it, he was very confused. He thought they were pictures out of a gynaecology textbook. From then on, every time he visited, he would get the sheet out of my drawer, hold it up, and proceed to laugh hysterically. Of course, I would start then too, even with the threat of suctioning hanging over my head.
I can remember another night with Pete and Ali. We were in very silly moods. It was back a few weeks because all I could do was move my head. I blinked out that I felt like I was just a head on a pillow because the rest of my body was dead weight. I started moving my head from side to side and we joked about me being one of the clowns in sideshow alley. Again we laughed hysterically like 13 year old. There were many more ridiculous jokes on many more occasions.
Pete’s wife Courtney is definitely the mature one in the relationship. Time with her was always relaxing. She’d always pamper me doing my hair, nails, massaging my head, neck and hands. She’d listen to my fears without judgement and offer me encouragement.
Then of course there was Steve. My beloved husband. I probably saw less of him than many other members of my family. We had 4 little kids at home who needed him more than I did. I wanted him to spend as much time with them as possible. There were days though that I had an overwhelming need to be with him. If I needed him, he never failed to appear by my side. We often just sat quietly, but it was enough for me to have him close.
I had major concerns that I wouldn’t cope being away from the kids. Steve and I had never lived near family, so leaving the kids was not a normal thing for us. I only saw them a couple of times a week, and only for short visits. I was very surprised how well I did cope. I think it helped that people were constantly coming and going between home and the hospital. I knew what the kids were doing each day, how they were coping, and I knew they were surrounded by people that loved them.
I also had many friends come from far and wide to spend time with me and show me I was loved. There were many days I didn’t feel up to visitors. Seeing people for the first time was tough. I felt self-conscious about the way I looked and anyone seeing me for the first time would get quite emotional. This was all pretty exhausting. On other days I was tired after a sleepless night, in pain or nauseous. I can still vividly remember seeing a lady and boy standing in the hall. I must have been having a bad day, so Pete jumped up to tell them I wasn’t up to visitors. As they walked away I realised it was Jo and her son Stan. They were on holidays in Albury from Bendigo and had driven 4 hours to see me. I tried to blink to Pete as fast as I could that I wanted to see them. He ran after them but they were gone. I knew Jo would be so calm and have words of wisdom for me.
Since marrying, we have had 5 major moves. During this time, both my siblings have lived overseas for a number of years. We have never let distance affect our relationships with friends or family. Don’t ever take family and true friends for granted. It’s these relationships that make us who we are, and make our lives meaningful. Hold on to those you love because if tragedy strikes, they will be the people helping you pick up the pieces.
When I started this blog post, it was going to be about ICU staff. It hasn’t turned out that way. I write from the heart and don’t always know what will appear on the page. I will write a part 2 about the staff and how they made my nightmare bearable.
Hi Steph, you might not remember me but I first met you and your mum when you came in for compression stockings at Mawson Pharmacy. I’ve seen you a few times at Trinity where both our kids go too (when I manage to get to school!). You have always stuck in my mind and left me speechless. I was so touched when I met you and heard your story. Speechless perhaps because I can see myself in you – a young healthy woman, wife and mother with a long life ahead. Speechless because every time I think of your journey I am reminded of how precious each day with our loved ones is. I could write words of courage and strength but I imagine that when you are surrounded by such love you just get on with what needs to happen – it’s not a choice. What I can say is that I see a remarkable woman when I see you! I read your words and am inspired! I have no doubt that the challenges you face are beyound anything I can imagine. Thank you for sharing them and for whispering into my life and leaving your mark! Hope to bump into you again soon! Have a beautiful Christmas with your family! Love Samantha
Hi Samantha,
Thanks so much for taking the time to write. I remember you fondly. When I came to you for stockings, I was still very self-conscious about my speech and my appearance. You were so beautifully warm and compassionate. You made me feel so comfortable.
Steph
Dear Stephanie, I am so glad to hear from you again, and moreover that you are progressing so nicely. It’s been a while since your last post… Orly, (Stroke survivor from Israel).
Sent from my iPhone
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Steph, I have loved all your posts (I’ve read every single one) but this one the most. You are my hero.
Hi Steffi,
( I won’t forget how much you helped me and support me during my first cancer treatment)
This blog made me realise that what is the true love and meaning of family and friends. Also move forward with hope and positive attitude.
You are strong and powerful woman.
I would love to be a mum like your mum, you, Ali, Courtney.
True love is just like your family…
Thank you for sharing the story.
Love you, Junko
As usual steph you continue to inspire me and give me strength when i think i have none.
Love you and really miss you. Xx