Sunday afternoon. Bright sun, milky blue skies, and cool for this time of year. The sun rests a bit higher in the east than a month ago, even as temperatures have fallen. On the marsh and in the bay a thin coating of ice has formed; it swishes with the wind and tide.
We’ve continued to be Covid careful. This morning we went to one of our favorite bakeries which was largely empty so we sat down with our coffee and pastries. Within what seemed only five minutes the bakery was packed and there were people sitting right next to us. We considered evacuating but decided doing so would be too messy and too late. So it goes.
When we left the bakery we turned right at an intersection at which we have always turned left towards the beach. Turning right, we now know, brings one quickly to a magnificent salt marsh and two wildlife reserves. Given the morning was cold and windy we made only a preliminary exploration of those spaces, promising ourselves we would return on a warmer day.
We were reminded this morning that along with post polio syndrome there remains the necessity to avoid Covid if at all possible. (I recommend avoiding post viral syndromes if at all possible.) Disabled folk have been disproportionately impacted by the virus, very much in keeping with disabled life in general within our colonial culture in which disabled mostly means expendable. Even though my education, career, and relative economic comfort largely cushion me from the full impacts of ableism, Covid and the colonial state remain a threat. I wish it were otherwise for everyone.
I seem to have fallen into a well documented post polio pattern: I have energy first thing in the morning and in the evening. A nap or two usually help but the afternoon too often feels like slogging through marsh muck. Often I become energized enough in the late afternoon to make dinner, an activity I usually enjoy, save for those times of food boredom during which there is nothing I want to make or eat. Then around 7 or 8 in the evening I wake up and tend to gain energy until bed time or after.
I’m experimenting with better ways to pace the day. My preferred way of working is in longish, concentrated spurts. While I well know that I might be better served by frequent total breaks, the idea of stopping whatever I am engaged with every 20 minutes in order to totally rest is appalling. I understand the math would actually work in my favor but the process is just alien, and frequent interruptions destroy any sense of flow.
As you might well guess there may be another process undermining my transition to a more sustainable routine. In order to make a living and raise a family while navigating PPS I have put aside any number of activities, projects, and dreams, all of which are now clambering for attention even as my stamina and energy decrease. My decision to retire next month appears to have exacerbated this process and things not yet done have lined up at my door, pointing out that there is much want and an unknown but finite time to do things in. Dreams and desires do not much like being shunted to the rear for much of a lifetime. Oddly all the dreams that were nurtured and desires met seem to have no value in the discussion.
I wonder whether living in a colonial culture in which only productivity matters contributes to this erasure of accomplishment. Doing so with an almost life-long disability certainly adds to the challenge. I seem to expend an awful lot of energy resisting the notion that as an aging disabled person I simply don’t matter.
Dreaming the World 
Thanks for letting me know that there was more to your post than the weather report. You touched a nerve. I, too, have wrestled with what you described and feel like I might have made peace with dreams that couldn’t be. I have felt myself gain a greater appreciation for what I accomplished but can no longer identify what meaning my life has except to feel joy in living and to be kind to others. I still feel a sorrow deep within because there are so many things I can no longer do. I seem to be able to live with the ebb and flow of energy throughout the day that is a part of chronic fatigue but get frustrated when I get just enough energy at 9:00 at night to make sleep difficult.
Pat, I imagine most people our age do not understand debilitating fatigue. That much has not changed. And yes there is the sorrow and for me, sometimes anger, at what is no longer possible or was never possible. And yes, that experience of too much energy at bedtime is so very frustrating! Lying awake with one’s racing thoughts……
One of my teachers used to say that when we get old enough we realize that what really matters is paddling our kayak out into the bay and watching the sun rise and light illumine the world. Some days I am almost there. Other days, definitely not.
Chuckle – yes. I am learning to find joy in each day – no matter how mundane.
I am thinking mundane is a state of mind. Unfortunately I find myself in that state way too much of the time.
I am not disabled, but I’m certainly aging and deal with some of the same issues including accepting the fact that some things that I dreamt about accomplishing are no longer in the play book. I don’t know that I’ve truly accepted it, but I do try to deal with it. The world we live in today does not exactly look like the Waltons scripts where senior members of the family were cherished for their experiences and wisdom.
Judy, I had not thought of the Waltons! I grew up with grandparents being assets and much loved (at least the sane ones). Anyway, I guess we all are faced with dealing with the losses, no matter how hard that is. Thank you for this lovely comment!
I am not disabled but am aging and have some healh issues. Retiring is srange at first. I’ve been doing it a while now and find having projects is essential for me. I’ve been working on a novel which is almost done. After that I plan to get on with art and craft projects. The good thing about retirement is that you can work with your energy levels. I rest and/or meditate for an hour or two in the afternoon and try and stop work before 5pm. Like you, I’m avoiding covid. Take care.
Thank you, Suzanne. There is a saying in disability circles that if we live long enough everyone else will join us in our challenges. Of course that is only somewhat true PPS. Still, I find some solace in knowing we have more company on the journey and we are all doing our best. I would love to see the novel!
I like that saying. I have a severely autistic grandson who has made me very aware of the challenges of disability. I am constantly learning from him and support my daughter in her struggles to get adequate care and respect for him. (he is mostly non verbal).
Suzanne, I have fought to get kids the aid they need for my entire career. Sadly, letters from attorneys are too often the most effective tool. I have also found that some school districts are much more caring than others. Anyway, good on you. Many people just give up.
It’s a different system here in Australia. The grandson is now nearly 17. There seems to be a gap between support services for autistic children and opportunities for autistic adults to work in sheltered workshops and the like. My daughter had a meeting with her support coordinator and the organisations she’s involved with this week and got a new program approved. Fingers crossed.
Here, too, there is often chaos when a person has to transition to adult services. The big issue is that there is no agency that HAS to provide services……
That’s true or that if they do pròvide services that they’ll be any good at it!
There are big problems with neoliberal capitalism …. principally a lack of empathy…..
Absolutely. They’re a selfish lot.
Sure are a lot of ’em.
Too many!
I have found that as I age and my knees have gotten very creaky, I must say say no to many things—having a dog, keeping the house the way I would like, having big gatherings here. However, I have focused on the things that are very important to me—writing, gardening, family. Those things are enough.
Laurie, Now, in the midst of Covid, I find I do not know what is enough. There are so many competing desires and needs, one of which is to settle into enough. Some young aspects of me find that to be a very hard task.
I hear you. Not easy to give up the things we once did. But, for my own mental health, it was necessary to pair down and acknowledge I just can’t accomplish all that I used to.
Laurie, we polios were taught to fight through all challenges. It is amazingly difficult to stop that behavior. I keep working on ity.
Well, there is a time to fight and a time to back off. Hard knowing, sometimes, what is the right approach.
Yes. Very much like shoveling snow……
I’m coming to terms with the idea that the older I get, there are some things I will never do. It’s then difficult to know which dreams to pursue. I hope that the dreams you follow bring you joy Michael.
Andrea, than you. You speak directly to the problem: so much wanting and less energy. How to choose? I guess it is a quandary of our aging.