I was one of those kids who was sure that No ONE was the boss of me; not even my Momma. I remember the very first time I was ever angry with her, being five or six years old and how I glowered at her as she tied my dark brown orthopedic shoes and tried to push me to do more physical therapy when I just didn’t want to.

As she lifted her head after tying my shoes, she was met with this seething six year old, who had Excaliburs in her eyes and murder on her face… for my Momma. How I ever survived to write this retelling is still a mystery to me all these years later. I’d like to think it was because I was her ‘baby’ (youngest) in that moment or mayhaps because I am her first girl? All I do know is ye Gods spared the whole of my life that day and I am thankful.

I didn’t get what she didn’t understand about me saying ‘No’ and I aimed to correct her misunderstanding. What I was met with instead, after her initial shock of facing my anger wore off, was a stern command to NEVER look her in the eye again when I was angry and to instead look to the ground and to essentially be angry at myself.

What this did was to shore up my un-worded understanding that indeed, no one could be the boss of me because they were all stupid. (Hey, I was six.). More than that, it made me lean into myself in a way that to this day, I’m not even sure I understand. It is this leaning-in that is part determination, part spite, part fuck you – fight me!

You can imagine how ‘well’ that’s worked out for me with my main condition, SMA. I like to think of having SMA as being a roommate that has overstayed their tenancy. Can’t kick them out excatly but you don’t want them there either.

For the most part, the things I’ve done and accomplished in my life have been in defiance of what the literature has said someone with SMA shouldn’t be able to do. The other part of my drive in living has been to ‘show’ SMA that it’s most certainly NOT the boss of Me… because it’s stupid.

How does it think it’s gonna just be all up in my life, trying to stop me from creating? Making it difficult to create a little human? Bet. I’ll give birth to these micro-image photographs instead. Trying to hem me up by limiting what and how much my hands can do? Hold my coconut yogurt cause I got this growing body of prints called Study of Hands that will put these hands on you. Keeping me hushed by limiting my ability to work? Yoooooooo! Have you seen all these coloring books I’ve created on Amazon though? SMA… fuck you, FIGHT ME.

Until it does, in the insidious ways that it operates.

I woke up yesterday morning, all clogged up and congested in the sinus regions. For normal folks, this would have been a run of the mill spring time annoyance. Blow your nose or take some meds and go on about your day. After clearing my head of sleepy thoughts, I sat real quiet and still on the inside, thinking…

How bad is this really? Have I been having this issue more than this morning and not realize it? How do my lungs feel? Are they getting congested? Is that slight tightness across the top of my chest just cause I’m naked and cold or cause something is there?

And so, in it’s underhanded way, this is how my SMA reaches it’s spindly fingers into my awareness and reminds me that it is here. What always starts off as a common, simple cold, can quickly spiral into an all hands on deck emergency in quick time. The danger I was considering yesterday morning in my sinuses being clogged up, were if they were spawning a low-key infection. If it was and I did nothing, then the gross post nasal drip would head down my throat, possibly be aspirated into my lungs where the low-key infection could be incubated into a full grown chest situation.

If anything gets into or happens with my lungs, I better be super aggressive with it or face hours in the night of wondering if I’ll make it through. Because SMA weakens my muscles, it makes it impossible in the worst cases (as in walking) to difficult in the better cases (swallowing/eating) to do things. Since my diaphragm is also a muscle, it is affected too.

So imagine your lungs are filled with crud and you could not cough hard enough to clear them. Imagine you were laying down and could not cough hard enough to clear. The lungs, doing what they know to do – create mucous to encapsulate the crud so you could cough them out, keep creating mucous cause you know, crud. But you could not effectively help them out because SMA makes coughing a really difficult thing, especially when you’re sick.

Yeah. All that went through my mind yesterday morning. I remembered how I thought I was gonna lose my life over the flu-plague over a year ago because I didn’t want to let SMA ‘be the boss of me’ and so I hadn’t advocated for a hospital bed that I would be able to use to elevate my head when I felt like I was drowning in mucous and unable to cough or call for help.

Yeah, no. That was called me being unsmart and stubborn. After that near-death fiasco, late last year I advocated for that hospital bed that I hated for all of 3 seconds once I slept on it and realized how great it is to have the ability to re-position myself if/when I needed to.

And this time? After realizing how my body was not gonna be able to overcome this clogged congestion on it’s own and how the tightness in my chest was not getting better on its own, I did what I do: I took a dose of liquid Mucinex and had Nephew brew me up some non-ginger sinus tea with lemon. Then I went to bed last night in a semi-inclined position, for when the Mucinex and sinus tea decided to loosen my congestion, that I wouldn’t ‘drown’. Then I took a deep breath and fell peacefully asleep.

Good news! My smart un-stubborn thinking helped me make it to the morning! Hi y’all!

Aaaaaaaand SMA is still not the boss of Me – fuck you, FIGHT ME!