The little reminders were everywhere. With a turn of my head, I can see how my life is not like theirs. I am reminded how my life is different. This invisible line that divided my life from before and after seems starker and more pronounced than ever lately.
I can fool myself into thinking that this is normal, but as I drive through town, I can see what so many others take for granted.
The mountains rest gently along the lake. There is smoke hanging low, refusing to let the tourists see all the beauty that is hidden behind that sheer curtain that has been our constant companion these last several days. The tourists don’t seem to mind, nor even notice. They walk the streets of our quaint town, stopping to window shop, or to find a table along the sidewalks for a bite to eat.
This is when I feel it the most.
I want so desperately to pull my car along the street’s edge and to walk towards the water. To feel the warmth of the sun, and the carefree last days of summer. To lose all sense of time or responsibility and to meander along at my own pace and on my own path. I want to walk along the pathway that leads to beaches, and children playing. The park where strangers smile at each other as they pass. Those out strolling, a dog at their side. The boys shooting hoops, or the teenagers rushing past towards the skate park on a precarious sliver of wood on wheels, to show off their latest attempts at fooling gravity.
I continue driving. Each red light, I glance around. There are new stores I hadn’t noticed before. The local watering holes are full of regulars; bikers with their leather and fringe, the retired who have claimed their seats just short distance from their classic cars, their pride and joy. The ladies sauntering back and forth, hoping to catch an appreciative glance their way. The families from out of town, managing strollers and diaper bags, hoping to shield their young one’s eyes from the dangers of that side of the street. Young tourists, holding hands and strolling along, imagining what it could be like to build a life in this idealic, small community.
I yearn to have the freedom to stop. To walk with those strangers on the sidewalks, to see the town through their eyes. It is not the people that I want to lose myself in but the freedom to come and go that I crave. The idea of being able to go where I want, with no agenda, or responsibility waiting for me. Instead, I quickly glance at the numbers on the dashboard.
I am late.
My son is chatting happily beside me, not noticing that I am frustrated with every red light. It is a gift and a curse that I have, to be forced to stop at each and every damn light that I happen upon. I should take the time to slow down, to breathe, to remember that this too shall pass. Instead, my anxiety climbs with the ticking of every minute I am forced to wait, and to notice how my life is not like theirs.
Always, I am planning, adjusting or bending to what other people need or want. I have accepted that this is my journey, this is my path. Yet the days when I get just a moment of respite or freedom from a life of ALS, I instantly feel it. There are days when I feel as if I am confined in a tiny box, ready to escape at a moments notice.
Yet I also know what that means. I know what happens when I am no longer caged, bound to the ties around me. I know what happens when I am no longer living a life that is shrinking smaller and smaller with every year that passes. When I am finally free, it will be with a broken heart. I will have lost something precious once that freedom is gained. Instead I continue to fight these feelings of discontent when they pass over me. Instead, I choose to stay…and I will remind myself that these feelings are temporary, this part of my life will one day be over.
One day, he will be gone, my children will be grown and I will have the freedom to come and to go at my leisure. No one needing me, or calling out for me to take care of their needs and their wants. One day, I will have nothing but time to focus on me. One day, I will no longer be needed.
And this thought terrifies me…