Come, sit beside me at my campfire.
How about some apple cider or hot cocoa on this crisp autumn night? It’ll warm your bones. Help yourself to a s’more. I haven’t yet figured out a pumpkin spice recipe, but my maple version is some kind of dynamite.
Would you look at that harvest moon above us, glowing in all its nutmeg majesty. Patiently awaiting summer’s sabbatical, it emerges bright-eyed and vigilant as the twilight guardian of October. It climbs in the sky like a pumpkin chariot for celestial passengers. Let’s lasso it, holding on tightly to the magic of the moment.
Whenever I sit around a campfire, a smoldering intimacy with the night beckons my innermost reflections about the folklore of my life. I need to feel safely immersed in a moment before I can open my heart and mind to talk about the hard truths of my SMA. I must be able to camp out in a feeling before I can dissect it and make sense of it — much like when I reach toward the center of my being to capture a perspective that breathes life into my columns.
I can reveal more of myself in the shadow hours. Akin to how the night washes all color from the blush of daytime, darkness draws forth the afterglow of my affairs and undertakings. In the dark, I can clearly catch sight of what is written across the stars. Within a palette of night, I don’t spend copious amounts of energy discerning which colors correlate to which emotions, and how they’ve mixed together in serpentine knottiness from primary to secondary to tertiary shades.
Sitting around this alfresco hearth with you, I feel as whole as that luminous gourd in the sky. But there are times when my moon is in a different phase. Portions of my whole self might wax and wane, and the absent portions leave gaps of vulnerability.
When I’m not feeling whole, I find difficulty assigning words, descriptions, and sentences to my story with SMA. I turn inward. I stonewall intimacy with my disability, and intimacy should never be forced.
One of the most intense wars waged within myself involves determining the degree to which I comfortably reveal my private rendezvous with SMA. When my dignity has often been mauled, I find myself hedging my experiences for the sheer gratification of feeling in control of something. Sometimes, we must hold things close to protect them.
In order to thrive, my daily life is filled to the brim with accommodations. I’m required to dig into personal areas of my life and pull out classified documents that validate my needs. In living with a disability, I’m constantly expected to allow people to peep their prying eyes into the labyrinth of my life. They’re allowed to poke at each candlestick that may lead to a secret staircase. They ask to peruse family heirlooms and rooms of nostalgic beauty, expecting a guided tour to explain each novelty item we pass.
Intimacy with my disability is sometimes forced in other arenas of my life, as well. When I’m front and center in the coliseum of advocacy, I feel compelled to talk about deeply personal intricacies of my SMA for educational purposes. Where others might have the privilege of hushing an embarrassing occurrence, I might consider how displaying it to the masses could deepen awareness. In hopes of building a more compassionate and inclusive world, I willingly pit my honeyed modesty against voracious monsters.
As I’ve become more cognizant of how forced intimacy dampens my spirit, I’ve arrived at some important realizations:
I do not need to bare my SMA soul at all times.
I do not need to be an open book.
I do not need to wave “ask me anything” flags on social media.
As a human being, I’m entitled to a cloak of invisibility; it is kept on hand and is a safe harbor for my mental health.
I’m learning to balance my comfort level and consider what is happening in my life at any given time. If I know that I have an upcoming appointment with a new healthcare provider, I can anticipate the visit will evolve with mounting questions — each a toll booth demanding fees for safe passage; each summoning me to fetch jangling change from deep crevices within my writhing coin purse heart.
Perhaps that week, I will shy away from posting a vulnerable piece of advocacy on social media. Instead, I’ll build an intimate campfire with a few close friends.
These tiny acknowledgments of my own comfortability is an act of compassion toward myself. It’s a way for me to remain in touch with the moon in my night sky, understanding how the phases are merely an illusion.
If I look closely, I’m always whole.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?