It’s been a busy few months. Walking “my little girl” down the aisle, hobnobbing on the lawns of Government House, Christmas, New Year, “my boy’s” engagement & my own engagement to Marz! Family catch-ups. Health issues for our kids and our parents. The impending arrival of a nephew! Funerals.
But when isn’t life busy? Hatch, match & dispatch and all the spaces in between getting crammed full of so much “stuff”.
Personal milestones, work milestones, family milestones, catch-up for a beer, reaching for the stars, feeling crushed, noise, peace, love, hate milestones. “I think I hate milestones” milestones.
A couple of cheerful observations that I read in a post on Linkedin, about a study made on people in palliative care:
“…the regrets of the dying can be sound and invaluable advice for the living.”
“…we often take our lives for granted because we are healthy. “
Apparently, the 5 most common regrets observed, by a nurse caring for those in palliative care are:
1) I wish I pursued my dreams and aspirations, and not the life others expected of me.
2) I wish I didn’t work so hard.
3) I wish I had the courage to express my feelings and speak my mind.
4) I wish I had stayed in touch with my friends.
5) I wish I had let myself be happier.
I felt very knowledgable after reading the unabridged version (https://www.linkedin.com/pulse/study-reveals-5-biggest-regrets-people-have-before-die-iwuoha/), but as is usually the way with me, my own experiences and listening to first hand accounts of others, seems to hold more gravitas.
I was working on my NDIS plan and it was the very first time I’d met my Support Coordinator. We were discussing my work-life, especially my current role and how much time I had left in the workforce, when she rather astutely picked up the cloud of worry and guilt hanging above my head. (I say astutely, however, it is often pointed out to me that my facial expressions are fairly transparent, which isn’t altogether a bad thing, because a few years ago, I hardly had any facial expression! A symptom experienced pre-diagnosis/pre-treatment.)
I had felt guilt (a shit-load of guilt) about what sort of future I’d be able to offer potential partners, when I was dating and even more so now, with my future bride, Marz.
So much so, it had been a block for me when it came to being open and honest about my condition. ‘Luckily’ for me, Marz had spotted my slow release patch on our second date – kayaking – which made the segue into a discussion, I’d been afraid of, a little easier.
That worry and guilt were quickly swept aside by my Support Coordinator, Alex. She vociferously deemed that NDIS funding would help with my needs, as my condition progresses, so that my relationship with Marz is that of husband and wife and not of patient and carer.
A huge weight was lifted from me at this point, as Marz had just told me how worried she had been about having to be the bread-winner looking forward and this was potentially one less thing.
Over the ensuing weekend, Marz and I attended a conference held by Parkinson’s SA, for young onset sufferers. It was well attended and very well run and a catharsis for me, meeting and listening to other people’s experiences. We’re not so alone. Some of us are struggling with acceptance and a variety of emotions. Others are ‘just’ dealing with the condition; the symptoms and side effects. Some are really struggling with both.
One thing was clear to me. Guilt was a common emotion experienced by many of those I spoke with. Those afflicted with the broad group of disorders referred to as Parkinson’s and their partners and carers.
My own experience of emotions like guilt and behaviours like pride (stubborn, blind pride), often lead down a lonely path of self loathing and self flagellation.
I’ve been lucky enough to have worked through a lot of issues. And survived. Bloody existential questions! Bloody milestones! They should be called millstones. As one of the attendees at our conference put it, this affliction has taught me to de-clutter my life. I’m filling my life with moments. I probably won’t enjoy all of them. But that is true for everyone. It’s Sunday. I am going upstairs to see my special person. Maybe, we’ll even enjoy a moment together. Afterall sharing is always nice!
This is an awesome message, directed at males, but I feel that it’s relevant to everyone:
Beautifully said Michael
Thanks Maria!