Stagleap Provincial Park
I haven’t written in some time, but not because I’ve been feeling poorly. Just the opposite, in fact.
As the reality of ALS hit, and sank in, and various stages of grief were navigated, it gradually became…normal. Our new normal. And with it came a dramatic mental shift for me. But it was rough sailing, through choppy seas, and I didn’t dare take my hand off the wheel until I knew I was in safer, smoother waters. I focused on changing my outlook, my lifelong pessimistic, malcontented view of the world, and searched for mindfulness. And eventually, I found my way around the corner.
Of course, turning corners means you run the risk of running into a wall, and so we did when we unexpectedly lost our Newf Jack to a sudden illness. He was 10, a decent age for a Newf, but I thought he might outlive me, and I miss him terribly. Part of me was a little relieved that there is one less thing for my husband to worry about, such is the nature of this disease and knowing what it holds.
But knowing what it holds has become a tool for me in learning to focus on the moment. While I know what the end result will almost certainly be, I don’t know exactly what roads will take me there. So, I can’t worry about what I don’t know.
Being in the moment is not easy, and those who can do it naturally are gifted, as far as I’m concerned. A ton of work is involved in changing one’s outlook, and I have somehow, against the odds, done it.
Never in my life have I been so at peace with myself, so still. I laugh daily. I enjoy things for what they are, and have learned to see, to really see, what’s in front of me. A new sense of gratitude has settled in, and a sense of freedom, as odd as it may sound. Oh, I still have my moments, after all, I am a menopausal woman with a terminal illness who never operated on a even keel the best of days.
But those moments are few and far between.
No, it’s not a form of denial. I am reminded daily of my physical deterioration, of the hollows and troughs and creases where muscles used to be, of the growing number of daily tasks that have been relegated to the past, and the frustrating feeling that we are always one step behind in trying to get a grip on adjusting to each loss.
Nor have I stopped looking, researching, reaching out to other pALS. I’ve just found the balance between having ALS, and letting ALS have me. Hope lives here.
How I got to this place involved, involves, a lot of work and support and I’m lucky enough to have both a great health care team, as well as an amazing circle of family and friends who have stepped up in unimaginably selfless ways. And of course, my husband Mike, my reason for living and fighting.
(They all deserve more credit than a few passing lines, so I’ll get back to them in future posts.)
We’ve not long returned from an extensive trip throughout mainland BC in MoHope, and I look forward to sharing some of our RV’ing adventures with you, among other things.
I promise to not be away so long this time.