Instagram post: It’s been 6 weeks since I last posted on my Instagram which is unusual for me. I’ve been receiving a lot of messages asking if I'm ok (thanks for the concern, we're fine 😊) so I thought I should return. My last post I shared about Jason's ER visit and losing his job. Since, I've mostly been busy with increased freelance to make up for job loss. Other than that things haven't been much better with a series of new conundrums like increasing health issues, mourning change, family and loss that collectively put me in a foul funk -- making me feel detached and over it. I won’t bore you with specifics as many are going through so much right now, but I’ll share a little unpleasant blip that contributed to the sadness and disconnect.
A few weeks ago I changed my phone password. Before realizing I had changed it, I was locked out of my phone so I had to recover it. I was soon confronted with the fact that my last backup was from 2014! How was this possible?!
In recovery mode this 2014 drawing “Ponytale” showed up as my phone’s screen saver which I thought was fitting. Like most of my art, there is a theme of loss. This illustration specifically shares the constant loss of simple things, like the ability to tie my hair in a ponytail.
I lost six years of time. I’m not one who places importance on things, I prefer to live as minimally as I can. But what I do deeply care about is my media, photos, art, documentation and memories. Thankfully, through the years I manually backed up much of my photos and travels but everything else was lost, including all my pictures and road trips from this year except the few I uploaded. The most dramatic loss was thousands of iphone notes over the years, each multiple pages long. The other, losing my mom’s voicemails and text messages that I had saved. She died in 2016.
My iPhone notes were a scrapbook where I documented my string of thoughts, ideas, drafted future posts, life’s questions and ponderings, socio-political thoughts and research, design concepts, quotes or ideas I’ve collected from books I’ve read or films/documentaries I watched. I lost all my quarantine poetry. I used to write poetry just for myself and began writing again this year to fill insomnia-filled nights. I lost all my children’s book thoughts, writing and crafted lines, which was made even more dreadful by the fact that I had already lost a bunch of my recent and unshared children's book art and illustrations a couple months ago when my iMac died.
Thinking one day I might write a book about my life, I began a private digital journal in my notes a few years ago to document my in-the-moment thoughts, stories and memories. Hundreds and hundreds of those journal pages are now gone. I can recall memories for a book but it’s not the same as looking back at raw in-the-moment purging.
I know in the future typing will become nonexistent so over the years I’ve used my slowly dimming strength to do what I can now. I’m constantly documenting my random thoughts, writing and taking pictures, much of it never shared publicly. If I’m in the car, I’m writing. If I’m in bed, I’m writing. If I’m watching a movie or documentary, I’m annoyingly writing and documenting my live thoughts about it. This is time and effort I’ll never get back.
After all this content was lost in time Jason and I got in a little fight as he couldn't understand why I was so upset. I cried, “I don’t have time! I don’t have time!...”
With a progressive disease time is always nagging me because how I am physically today won’t be my reality next year. This can make me feel powerless, and documenting is a form of savoring what is...what was. Perhaps it’s also a way to have some kind of control in an uncontrollable situation.
There are many kinds of disabilities but a progressive condition is different from other disabilities that are static and still leave you independent. My situation goes ALL the way. My time with ALL physical capabilities are finite.
My biggest obstacle with disability is lack of time and independence. Loss is such a constant and familiar thread throughout my life so you would think I’d be good at it by now. But time can still feel aching and pounding as I feel it shred through unfiltered choking air. I feel like I’m losing time all the time, and in Covid times, as my strength continues to slip through my fingers, I feel time suspended even more. Like everyone I’m waiting to be able to live again...except I don’t have as much time as everyone else.
Sometimes I wonder how much of my time is spent on examining what is lost and how wasteful that is. But it’s easier to advise not to think about it than it is not to when the disintegration of time lives and breathes in every single muscle.
After losing so much personal work I’ve been grappling with motivation to keep on. This and dismay about the state of societal affairs; the division, lack of compassion, misinformation, exploitation by power and society’s inability to care for each other’s well being, all just put me in an FU and disconnected state and I just didn’t feel like posting. Not being transparent was kind of nice and detached far too comfortable. It was nice not to feel obligated to share or post. But I don’t want to be ok with feeling disconnected and knew I needed to start sharing again. After all, I have benefited from so many who shared their stories. If my story can help someone feel heard, discover something new or think things in new ways, then that’s a good thing.
Maybe I shouldn’t think of it as lost time. Even when we’ve loved and it’s ended, the experience is no less significant because it didn’t last. Time can make us feel lost but there is always more as we move forward...more ideas, new adventures and new stories to write down…so I’m doing just that.
You can purchase Ponytale print and products at my Society6 print shop.
I post on my Instagram more frequently, so feel free to follow my stories and art @ kamredlawsk