I needed to choose an image for my 366 day photo project. I had culled through the photographs from that day already, edited them quickly on my phone so I could post one to my Instagram account before turning in for the evening. The problem was that, as I looked at the preliminary selections I had made, I had photographed something in two entirely different ways and my indecision increased the longer I looked at the images on my camera roll. 

It had been our oldest’s birthday a few days prior and we gathered in my childhood home with my siblings and parents to celebrate him in our lives. My memory card began with his smiling face and a birthday cake, and then ended with images of my parents with our youngest son. I initially thought to share one of the last photos I had taken but the ‘easy’ selection was, without a doubt, a cake photo with the candles being blown out. The image of my parents together, my son sitting on the arm of my mom’s recliner, held up by my dad, is not exceptional in composition or technique and it is bittersweet. It’s an image we were never guaranteed and while I’m thankful to have it documented, it is also a reminder of how much things have changed, of what we have lost to a horrible disease, but mostly, how much I miss my mom even though she’s still here.

Admitting those things can be difficult because without adding some positive preamble or silver lining, it can sound depressing quickly. Too often, I hear myself discrediting the hard things I feel by tacking on a handful of blessings to neutralize the heaviness for others. I am, without a doubt, grateful for much when it comes to our current ‘normal’ with mom but the hard stuff is still there and it will not change from being hard, no matter how much we try to shift the focus.

While I vacillated between the two photos, I became aware that my photo project and a vast majority of what I share are the easier, more palatable images representing our life. Pictures of my children are preferable because those images are aesthetically pleasing and the little people featured are, in fact, very cute. Photographs of my mom in what is most likely the later stage(s) of a horrible disease are undeniably uncomfortable. They are uncomfortable for me, and for those who do not bear regular witness to the degenerative nature of MSA, I assume it would/could be uncomfortable and somewhat shocking. 

There is an inner dialogue that I believe we all have when deciding what to share on social media and I will admit that one of the determining factors for me is how well I predict something will be received. The other guiding factor? How vulnerable it requires me to be. A smiling baby photo? That requires very little vulnerability, will be received easily and rewarded with numerous likes. A sobbing selfie I took while sitting in my vehicle, parked in front of my house because the fourth trimester had me shattered, overwhelmed and I was feeling guilty for not visiting my mom more frequently? That takes too much so it is replaced with something simpler to consume, something that requires less from the viewer in a world of double-taps and scrolling.

An image of my mother, in a body that is failing her at every turn, will continue to be the hardest image for me to take and to share. When I look through the viewfinder of my camera, there is a sense of urgency I feel, cognizant of each fleeting moment. During this initial process, the awareness I feel of the effects of this disease is muted. I suspect that after eight years, our sense of normal is skewed to the point where we see past the effect MSA has so easily, that we are vaguely aware of it at times. There is a sort of tunnel vision I experience behind the camera, but also in the moments I have with my mom.

When I put my camera down and I’m viewing the images on a screen, the blinders come off and I’m left staring at a reality, a history and a future that cracks my heart open with aching. It requires me to acknowledge the many deaths of dreams and futures I have had, and to experience that grief once again. There is a feeling of detachment when I am removed from the intimacy and immediacy of that moment, and it is then when I become sensitive to how things might appear to others looking in. 

I have images of Mom holding my firstborn when he was 5 months old and I can recall feeling hyper aware of every little change in her at the time. In contrast, when I look at images of my mother with my three children now, those incredible changes I thought I saw almost 8 years ago seem so insignificant now. My desire in documenting our life, specifically the relationships we have with family members, is that it is truthful. The difficulty in that, for me, is when I am assessing the photographs, assessing whether the image honours the relationship and sees the people or focusses on the disease. Being both immune and highly sensitive to the changes this disease has brought on is a strange place to be. 

My daily photo project began with little structure or objective - I wanted to be intentional about picking up my camera frequently after a season of ambivalence towards it. I hoped that it would foster creativity and lead me to photographing more often, with less fear. This project is supposed to be for me, the burden of meeting expectations or producing a palatable photograph to be consumed on social media removed. I didn’t expect that, in the process, I would have to acknowledge that I have taken the easier option time and time again because I am the one that feels the most discomfort. I have no profound thought to wrap up my ramblings, no wisdom to point out. If I could tie this up in a neat bow, I would. I think the only thing I can really conclude with is the intention to do the scary thing, the vulnerable thing and do it often. Maybe this post reaches someone, somehow that needs to know other people are feeling the same messy way. Maybe there’s a glimmer of light in here for them. Maybe, and most likely, this is simply a rambling marker for me to look back on one day; to see where I was, how far I’ve come and to honour every step along the way.