I don’t write about my main condition often.  In fact, I barely mention it’s name in real life (Kugelburg-Welander Syndrome, Spinal Muscular Atrophy (SMA), Type 3 or just SMA3).  Besides the naming of it not doing much to manage or change it’s effects on me, no one knows WHAT all its name implies or what its effects on me are.  So this usually has me launching into a super simple explanation of how this syndrome is my muscles’ inability to produce all the necessary proteins to keep them healthy and strong.  Of course the technical aspects of this syndrome are way more complicated than that but this explanation serves as my 10-second elevator pitch.

Though this explanation serves to educate folks partially on what my body ‘can’t’ do, it does nothing to explain to them the ‘rest’ of Me.  When people ‘see’ Me in my wheelchair, they tend to dress me in their preconceived ideas of what being alternately-abled means.  They assume that I am in a lot of pain all the time, they think I’ve not been out or have not experienced life.  They assume I am on some spectrum of sheltered and they, in a word, pity me.  I generally see it flash across their eyes and mark their faces with deep, furrowed sadness.  Which is always curious to me.  Perhaps it’s been my living life not pitying myself that makes me not pity anyone else.  It sounds so horrible typing it and then reading it over again, but it’s true: I don’t pity anyone.  It doesn’t mean I don’t have compassion, or that I don’t empathize or even that I don’t feel bad that a body is going through certain things.  I do go through those emotions.  But to pity a person?  No.  So I sure as heck don’t unerstand why they pity me.

I am pretty sure that this idea of being pitied, is what keeps me from talking more about my main condition.  When I finally put words together to describe what it is I happen to be going through, I worry that the person reading it will wander into PityVille and will see Me as that: a disabled person to be pitied.  But then there is the part of me that needs to share what it is like to have SMA3 because I know that there are parents, caregivers, young adults, friends out there who may need to know what the view of life is like this side of forty.  And I want to share it with them: the triumphs, the challenges, the stuff that the medical definition and letter-heavy name leaves out: the person behind it all, Me.

The medical definition and abbreviation leaves out how much of a busy-body I was growing up.  It leaves out how much I love words and language.  It leaves out how I love food and how much I used to drink.  It leaves out how my wit is quick and my jokes are even quicker. It leaves out how much I love learning.  It leaves out how I am #TeamPetty’s President and CEO.  It leaves out how sad I can get or how much I pray/meditate.  It leaves out how I live my life or my days.  It leaves out my opinions, my emotions and dreams… True: I share a body with this syndrome but it is not the whole of who I am.  I’ve lived my life in such a way as to constantly ‘prove’ that I am not SMA3, that’s its not the boss of me, that I don’t bow down to it.

But then there are those days…

Living with SMA3 is like being on a toboggan, headed down an untried mountainside with a loaded gun pointed in your face.  You know a few things right off the bat: a) the ride will be eventful, b) you’re gonna be in for many course changes c) you’re not gonna make it out alive but you’re gonna try like hell to live as long as you can with as much of your person intact as possible.  Yes.  It’s like that.  I can only speak to having type 3, but I know that I’ve experienced plateaus, where there have been many years of no discernible changes to my over all health or abilities.  And then seemingly out of nowhere, I hit a rough patch and my abilities begin a steady, bumpy, treacherous decline.  Two such times that come to mind where: 1) 2006-2007 when I first started having (un-diagnosed at the time) Celiac issues (which were so bad that I had to resign from work) and during the whole of 2016, when I had to deal with a whole lot of stress, from many different sides (family, house, personal life).  And if I’m being honest, this past hurricane, put the squeeze on me as well.

Each of those times saw marked changes to my stamina and abilities. It was like having to take a sharp turn on that untested mountainside only to realize that you’ve hit a rock patch. There’s no turning back, all you can hope for is some smoother ground… soon.  And you know what?!  It’s scary as hell for you and for the loved ones watching you go through it.  You never really know by the end of this rock field what state you’re gonna be in physically or mentally.  Yeah, it takes a toll on you mentally as well.  There is a certain level of Jedi fortitude that I have to maintain in order to keep mySelf together living with SMA3.  This Jedi Fortitude is generally impervious to criticism, callous people/remarks and the look of pity I get from folks.  But during those rocky rough patches?  I’m especially vulnerable to remarks because I am grieving the loss of what I used to be able to do physically just weeks or days before.  I’m dealing with my anger at having to need even more help. I’m dealing with my sadness of having to concede yet something else to this unwanted occupant sharing my body.

But then there are the days where the stars and moon align and I’m running on all cylinders and life is glorious.  I had one such day recently, where my Aide showed up on time, my clothes felt extra awesome on my body, my mood was chill and my arms were optimal and worth their weight in gold.  And then I got to the microwave and couldn’t lift my limp paper plate off the table to put in the microwave and heat up the rest of my food.  I had been doing well all day and didn’t want to call anyone to help me, so I made the decision to puzzle my way through this dilemma.  Inverting a glass loaf pan that was next to the microwave, I placed the soggy plate on it, maneuvered the plate with its cargo to the opening of the microwave and used my ‘reacher’ to push the plate into the elusive cavern.  And you know what?  It actually worked.  I was so impressed with how my SMA3 didn’t pwn me that day.  How smarts and ingenuity beat the limitations that this genetic condition bestowed on me.  I was so happy I began to gloat and proceeded to chronicle to my Sister how I figured out a way to help myself.  Smirking, I remarked to her how my life felt like one long Physics and Engineering Exam and how this time, I got a really tough answer right.

This is what it is for me to ‘live’ with SMA3.  It’s at times terrifying and exhilarating, winning and losing, damning and redemptive.

Lately though, in maintaining the balance of this syndrome, I wind back to this one question: what kind of person would be willing to go along on this ride with me?  It’s always been a question in the back of my mind, it’s just gotten louder and more insistent with age.  I don’t know what that answer looks like though because the answer doesn’t reside solely with Me, this I know.  Inviting another person into this toboggan with a virtual gun pointed in our faces, is asking a lot.  Half the time I live my life as if there were no toboggan nor a loaded gun and just concentrate on navigating and keeping myself alive.  But my heart always quietly beats for more.  And being the conscientious, hyper self concious person that I am, I couldn’t in good conscience invite anyone in.  How unfair, I think, for them.  How wrong.

And how utterly lonely, for Me.

Since I’m being honest and open: companionship, love, plays into this syndrome too.  In my black and white thinking, anyone being with me, doesn’t make practical sense.  Yet in my heart of hearts, it makes total sense.  SMA3 not only robs me of my physical abilities but it takes from me my confidence to know that I am worth the ‘risk’ to another person.  It robs them too in ways I am sure I’m not fully aware of.  And I live with this puzzle that is fraught with emotions and feelings and choices and decisions.

What I’ve come to know is that ‘love’ is not so ‘black and white’; it’s shades of grey and pink and red.  I’ve come to know that despite what anyone thinks of me, that my ‘worth’ doesn’t diminish because of it.  I’ve come to know that hope is free and that it takes just as much effort to hope as it is to doubt, so I choose to hope that the right person will cross my path.  What I’ve come to know is that the tendrils of SMA3 are sneaky and insidious and can sneak up on you in unexpected ways.

I hope to be able to share more about what it’s like to live with this condition, to show that I’m not always so brave in the face of it and how that’s still okay because I am after all human.  How I wrestle with it, how I win, how I lose, what my solutions and questions are.  And I hope y’all will come along for the ride. <3