I’m Stepping Out of the Past to Fully Appreciate the Present
It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the luxury of scrubbing my scalp with shampoo and my face with soap. I loved the feel of writing with a freshly sharpened pencil. Above all, I yearn to wrap my arms around my husband again.
I have also lost my voice, so I have a whole other list of longing around that. I miss humor the most. Being funny happens in the moment. Banter, sarcasm, puns, inside jokes, even movie commentary all happen so fast. Asking people to pause so I can type a joke means the moment has passed. There’s nothing more awkward than people silently waiting to indulge in your attempt to be funny.
Focusing on the past has led to jealousy. While returning from a recent doctor appointment, I got stuck in downtown traffic. While watching people walk with ease across the street, I was struck by a feeling of jealousy, like a monster consuming me. I glowered at people holding children the way I will never again be able to hold my godson. I observed a man juggling his briefcase and cellphone while answering a call. It was like watching a ballet. I couldn’t believe I had ever moved with such ease and grace. The memory was both distant and visceral.
Slowly, though, I have come to accept that living in the past means I am missing an equally precious present. I haven’t stopped mourning being a part of laughter and hugging those I love. I never will. My jealousy hasn’t disappeared either, but sometimes it is not so painful. Ironically, my loss is what has taught me how to live just a bit more in the present. I realized that with ALS, there’s always more to lose. I may not be able to make people laugh, but I can still laugh, and that’s something. Maybe one day, I won’t be able to laugh, so I should appreciate it now. Gratitude has helped me to step out of the shadows of my past to fully appreciate and experience the present. I hope it can do the same for you.
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Comments
Dave Reckonin
I'm not entirely sure that 'Gratitude' is the right word to use in the context of ALS. I think we can be grateful for all our abilities when we are reasonable fit and healthy, that is if we stop and take a moment to reflect on things. But once we have ALS then gratitude is hardly the emotion felt for the constant degrading of functionality.
Ask Rick Jobus if he feels grateful to God for discriminating blindly against him, and giving him ALS.
I don't know where the pell-mell folks get these crazy counter-intuitive ideas.
Barbara heap
I can relate....while sitting in my van as my husband runs into the store...I’m watching all the different sizes & shapes of people walking by the van. I stare @ their ability to walk so easily & can feel jealousy boiling in my system. I have to look away & distract my thinking.
As a nurse & knowing what’s coming next .....I had been living in dread of the next loss. I’m slowly accepting this process is not helping. So now I’m grateful that right now I can still move my fingers. This is my life now....almost totally dependent on others....a challenge to accept.
However, as ekhart tolle has stated, everyone should be living in the present moment. It will make anyone’s life better.
We all have choices in this journey....we can accept our condition & try to make the best of it or we can-sit & cry @ all our losses. I’ve done both & acceptance plus living in the present is the hands down winner.
Thank you Rachel for sharing...
Sending you warm gratitude hugs
Bountiful
Eileen Barry
I have ALS and supposedly it is slowly progressing. However I feel jealous when I hear or overhear people talk on the phone. My voice is adversely affected and I am hard to understand. Sometimes I think could or did I ever talk so quickly and plainly?
Thank you, Rachel for your input. I often have to remind myself to be grateful for all I still can do, for helpful family and friends but this is a difficult and progressively declining disease.
David Buschhorn
I have progressive bulbar palsy. It started in 2011 and has been pretty steadily getting worse. I can still walk and drive and take care of myself, but I can't speak or eat at all anymore.
Mostly, I can say, "It could be a lot worse." Generally, the kind of ALS that attacks your speech first, kills you FAST. 6-18 months from symptom onset (not diagnosis).