“I am fading away. Slowly but surely. Like the sailor who watches his home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory...Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.”
2018 was a difficult year. Much like 2017 was. But I managed to get out and see and do a few things. The highlights were skiing for the first time, my art show, celebrating my dad reaching seventy after surviving a double lung transplant, finally spreading my mom’s ashes and contributing an art piece to the Ron Finley Project. We also traveled back to Michigan a couple times for family reasons. But in between these pleasant pictures and my art show, I spent much of the year struggling. The beginning of this year was difficult as well. I stayed away from people while crying much of the month. So many times last year I didn’t want to see people. So many times I didn’t want to go on road trips or be my usual exploratory self. I felt caged and in a sense I wanted to exercise this loneliness alone.
If you’ve been following me, then you know why.
I’ve been…Struggling with the uncertainty of my health and it’s declining nature as I search for answers and a diagnosis for an illness unrelated to my GNE Myopathy.
Struggling with the progression of this damn disorder. I’m so tired of seeing parts of myself disappear.
Struggling with grief and loss.
Struggling with trying to physically keep up because there is so much I need and want to do, yet my body is constantly screaming for my undivided attention, superseding my will more often than I’d like to admit.
Struggling with knowing I’ll be alone living with this disorder when I’m old and far more progressed.
Our friends are starting to have children in what seems like a second wave of babies and it just reminds me that I don’t have my own family pod who will be there for me when I’m old and surely progressed beyond recognition. I’ve handled not having children very well, actually, but I’m turning forty in a couple months and this milestone has probably reminded me yet again of the things I can’t have.
We decided not to have children because we are already spread so thin. Keeping up with the progression is consuming as it is so I’m not sure how we could handle adding more, especially since we are alone here in California. But having children was always a dream of mine, especially since I’m an adoptee. In so many ways it has felt like my past is a partial past so perhaps I believed I could see my lineage and myself through my own child.
I’m my own worst critic and often fleet over accomplishments with instant thoughts of how I could have done better. I’m terrible at patting myself on the back, but I would have been a great mother. This I know. I have so much to share and pass on. But this is not my direction so I’m carving my own path.
Don’t worry for me. This is life — inevitably filled with ups and downs.
Life can seem so unfair. But rather than drowning myself in “Why me?” I remind myself that life does not deal in fairness, and as a minuscule colliding dot in this world, I’m no exception to the rule.
A friend posted this exchange he observed on a sky train:
“I saw the most incredible display of humanity on the sky train. A six foot five man suffering from drug abuse and\or mental health issues was being very aggressive on the bus with erratic movements, cursing, shouting, etc. While everyone was scared, this one seventy year old woman reached out her hand, tightly gripping his hand until he calmed down, sat down silently, with eventual tears in his eyes. I spoke to the woman after this incident and she simply said, "I'm a mother and he needed someone to touch." And she started to cry. Don't fear or judge the stranger on the bus: life does not provide equal welfare for all its residents.”
Pic credit: Mel Tillkaratne
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I take photographs throughout the year and at the end I compile these bits and pieces into a short vignette of my year. I make these videos to share my travels with others and to show disabled can do many of the same things, just different, but mostly for myself so I can look back and see what I did each year. A frozen snapshot to remind me of what I used to be.
It may sound morbid, but in a sense I’m preserving what I know will no longer be there for me in a week, a month or next year.
The impermanence of it all. In reality this is the case for all of us. We can lose ourselves at any moment. You too can be blindsided with a disability or stricken with a consuming illness. I don’t say this so you’ll fear a similar fate to mine, so don’t fear what hasn’t been lost yet.
But through my lens I am saying “good-bye”, in a sense. I had my time with these fleeting milestones and capabilities but like all good things, there is an end. My feet are dragging heavier in the sand as the seconds of time left fall into obscurity. This sentiment echoes in every movement I have left. Perhaps this is why I dedicate such attention to the little things. I’m resting on them with contemplation. I’m holding onto these things just a little while longer.
Please. Just a little longer.
This year marks my 20 year anniversary with GNE Myopathy (aka HIBM), yet even with time this does get any easier.
As I’ve shared countless times, my disability/disorder is not like other disabilities. People in wheelchairs are often clumped together but in reality the experience is different for each person including the prognosis. Some people are in a wheelchair due to an accident or disorder, yet completely independent with a disability that does not progress. But my disorder is progressive and this is the greatest thorn in my side. It’s also a reminder to live, to appreciate and to understand.
My body has a shelf life as all bodies do, except mine has been expedited at an almost cruel pace. This is why I put my focus on developing my mind and creating. I’ve been given the opportunity to think bigger and contemplate in the deepest caverns of my mind. I’ve been given the opportunity to appreciate and witness from a unique perspective. I’ve been given the desire to know the truth. I’ve been given the desire to understand others’ plights through the lens of curiosity. I’m doing my best to grab these nuggets from this experience, but the truth is there are days so difficult that silver linings cease to exist or rather are deeply lost in the momentary turbulence and proof that, “yes, this is happening."
Many individuals or motivational speakers say the key to moving on is not missing your old self, and if you’ve accepted it you would be happy just as you are. But this isn't reality and I wouldn’t pretend to be one of those people. I’m not even sure they are, either. I’m all about optimism and positive thinking but to experience ONLY positivity against great adversity isn’t honest. This doesn’t mean I haven’t accepted what is happening. But acceptance doesn’t void how furiously hurtful this experience can be.
But it’s here. It’s my life, nonetheless, so my job is to make something out of it or crumble into dust that never was. I would never pretend this is how I want to be and this lack of pretending doesn’t mean I haven’t accepted it or that I hate who or what I am. These are mutually exclusive responses and two opposing truths can exist at the same time. But of course I miss her (my body). How could I not? But in equal measure I like who I’ve become in spite of it. Because of it.
If I could share one message it would be to open up. Find perspectives different from yours and understand why, even if you would never subscribe to it. It’s easy to give a broad vision or stereotype to an individual or group but I promise you you’ll find answers are more grey than black and white. Be compassionate. Exercise empathy in all decisions — small and great.
Watch previous travel years here.
My art gallery
Follow my wheelchair travels, art and mini-memoirs at Instagram.com/kamredlawsk and Facebook.