I’m in two minds about posting this. I feel like it doesn’t really have a point. But, it’s all part of my journey so decided to include it.
None of us can really plan for the future. We don’t know what’s going to happen tomorrow, next week, next year. I know all too well that life throws plenty of curve balls and that being young is certainly no guarantee of a healthy life. The loss of 3 young friends to breast cancer reminds me on a daily basis that we only know with any certainty what happens next when looking retrospectively at our past.
Yet human nature seems to drive us to make plans. Planning gives us a sense that we are somehow in control of our own destinies. Our hopes and dreams underpin our plans, and many of us confidently assume things will all work out.
Before my stroke, I would imagine the future: looking after grand-children, caravanning around Australia with Steve, growing old with the love of my life. Since my stroke I have found it impossible to imagine the future. I’m not sure why. Maybe it looks so different to what I had planned that my mind can’t reconcile my dreams to my reality. Maybe it’s because I won’t live long enough to worry. Only God truly knows.
We spent this weekend in Sydney. We’ve had a lovely family weekend. For the last 3 years I’ve focused on living each day, cherishing every moment with my incredible family. We came away this weekend without the toiletries (it’s all packed and sitting on the bathroom vanity at home). A quick trip to the supermarket overcame the absence of toothbrushes, deodorant, soap and shampoo. It is however much harder to replace my medications. After 2 nights without medication to relax my muscles, I have spent countless hours awake giving me way too much time to think.
So tonight, my brain was working overtime. I slept from midnight until 3am. Since then all I seem to have done is panic about the future. It is unsettling to realise that I will always be dependant on others, which makes me completely vulnerable.
When my kids have grown up and moved out, I won’t be able to just get in the car and drop in for coffee. I realise that I will never be able to babysit my grand-children.
Mum and Dad have always been my security blanket. I’ve always known that whatever happens in my life, Mum and Dad are there if I need them. I am severely disabled now. As they get older, I realise there will come a time when they are no longer able to manage me. That reality struck tonight, taking with it a large portion of my perceived security.
So if anything happens to Steve, I will need to live in a nursing home. Nursing homes scare me. Visiting Gran in a nursing home, hearing the stories of other friends, coupled with the regular media reports on nursing homes, leaves me feeling they are institutions often lacking resources which leads to a lack of care and compassion. I would be completely dependant on the staff. The thought of being stuck in a bed with no ability to fend for myself, makes me appreciate just how vulnerable I am.
Then I started thinking about the kids becoming adults. They will establish their own lives. In today’s society, I am very aware that the kids could end up anywhere around the world. It is possible that all four of them settle elsewhere. I would have a difficult time travelling to see them. If they do stay in Canberra, it isn’t that simple for anyone to just pick me up for the day. They would need to be willing to have their houses accessible for me, buy equipment, and care for me – no small ask.
So with a very small support base in Canberra, life in a nursing home could be horrendously lonely.
Suddenly, all my plans seemed to fly out the window. I wouldn’t grow old in a rocking chair with Steve by my side, surrounded by children and grand-children. I was going to grow old alone. All the positive thoughts I had generated over the last three years had gone. I was so sad, scared and lonely. I was beside myself and just couldn’t find my way out of the darkness. A normal part of the grieving process or was I being self indulgent? I don’t know. I had no control of my thoughts.
I managed to recall some quotes. I found hope in these that things would look better in the morning.
I managed to sleep between 7 and 8 am and woke to a beautiful Summer morning in Sydney. We enjoyed a nice family breakfast followed by a wander through Paddy’s Markets. My fear for the future had gone. I was once again able to focus on the blessings in my life. I remembered that many people go through their whole lives never finding the happiness I have. Whatever happens tomorrow, my today is a precious gift.
BROKEN BUT NOT BEATEN 
Thank you Steph, this was very humbling, may God Bless you and fill your heart with Joy, for you are alive and you are loved, hugs, xx
Oh Steph, thank God for the sun!
Hi Steph, Thank you for your blogs. Tanya is right, this was very humbling. Waking in the middle of the night or not being able to sleep always seems to bring on frightening thoughts. I’m so glad you were able to find the sunshine of a new day. Your message here is a reminder for all of us to be greatful for what we have and to make the most of the present. I love the quote – If you live in fear of the future because of what happened in your past, you’ll end up missing the true gifts in your present. Love and hugs xoxo
Hi Steph – it’s odd how we humans seem to be hardwired to hit the mental fastforward or rewind button – fretting about the future or dwelling on the past. I do it all the time, but to what end? Much harder to hit pause and live in the now. You are so right that we should be grateful for our blessings and live in the present. The future will be here soon enough. Love reading your posts – if I had a crystal ball I’d say a book is in your future 🙂
I’m reminded of this passage (thank you Google) from James 4:13-15…
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
It applies to us all. Can’t take anything for granted. Thank you for the reminder.
ps: have missed you xx
Hi Steph, thanks for being so honest. I can relate to no thoughts of future, but after a shower the day begins. You were just out of hospital when I had my stroke. Life with kids and managing rehab is even harder than working with kids, especially with locked in. Love to share stories of what works best in rehab sometime! I just am starting to participate in a Western Sydney uni study that sounds promising! You managed trip between Canberra and Sydney. I grew up in Canberra and dad still lives there. But now in Sydney. That trip is awesome! I would be in too much pain! Focus on how fantastic that is! Of course, easier said than done! xx r
Hi Steph I am so pleased you have started writing again even though it makes me cry it must be so much better for you to share you darkest moments. Andrew is struggling at the moment & I think I have made it worse by interfering he is like you so vunerable. Luckily he has wonderful friends to support him. We all love & admire you so much. Sandra
What a precious woman you are, so brave and such a gift to all of us who are so privileged to call you our friend. Be blessed today and always! Please keep writing xxx
And with the light comes truth and hope…I am confident Steph that you would never be left alone in a nursing home, you have way too much to give with your honest and beautiful mind and way too many people who love you.
Hi Steph ‘like’ is not strong enough for how I feel about your blog entry today. Thank you for your deeply perceptive comments about the future and the value of life. I write as a 50-something parent of a teen stroke survivor. All best wishes
This is one of the most beautiful and insightful messages on life and perspective. Thank you so much for sharing it Steph. xxx
Dear Steph, All your stories have great value! I think you underestimate what you have to share with us, your readers and the rest of the world. When I see a new post notification from you it is like a gift I can’t wait to open. You will never be left alone in a nursing home as you have the courage to ask for help, to give to others and to inspire. Rani
Thanks for sharing Steph – that is scary and I also worry about the future for you, but as you point out, nothing can be done today, life must be lived to the fullest each day in the hope that a bright tomorrow will arrive. Thanks for sharing with us what could have stayed your own private thoughts – I feel so far away and miss you – reading this makes me feel not so distant. Xx