Her hands were warm and firm as they held onto mine the first time we were meeting.  She knew to reach into my space to complete the connection.  Knew from the hours of calls logged, from the technical and medical explanations, knew from my recountings and stories of changing plateaus, that she would have to meet M(m)e more than half way.  And so, there she stood, exhausted from travel and maybe some self-conscious worry, holding both of my sun-browned SMA hands.

They seemed small then, my hands in hers.  Puffy from late morning rushing to be ready and beginning of the day swollen-ness.  I felt embarrassed somehow, for their chubbiness, for their inability to reach further into her space, for them not being strong.  Smiling hard though due to her arrival, I shuffled those thoughts into the back of my mind and just looked at her, ecstatic, giddy, in awe at how surreal it was in that moment to have the voice that had only been in my phone, standing in front of me.

She’d been traveling well over twelve hours and I remarked at how tired she must be?  She only smiled, giddy in finally meeting me too, possibly saying something and then kissing me on the cheek or hugging me?  I can’t be sure which.  My mind gets fuzzy here because there was a short list of The People Who She Must Meet looming before me.  The first of which was my family idling in the house just behind Us.  I go to take the bouquet of flowers she wanted to hand to me and she offers to carry it instead.  I acquiesce and invite her into my home.

Bubble Girl

There is this buffer of space everyone gives me as a disabled person.  Folks don’t get too close for fear of being invasive or possibly just them being scared, to touch me or hurt me in some kind of way.  I enforce this buffer by not pushing them or inviting them beyond where they feel comfortable.  It’s part unconscious strategy, part self preservation – if they don’t fear being too close, they may be willing to help should I require it at some point (which I rarely do).  In the least, they’ll feel more comfortable around other disabled people they may encounter.

This buffer extends oftentimes to my Home.  The home portion though may well be part cultural and part defense.  My home is where I can exist as a disabled person without eyes prying into how I do things like shower or use the restroom.  My home is where I can be my sickest and my most broken without fear of an able-bodied bystander freaking out and my having to console them in some fashion, while keeping my being ill under wraps.  My home, I was taught, is sacred enough that not *everyone* should be allowed to enter it.

With Her, I’d done two uncharacteristic things: 1) I allowed her into my ‘disabled’ spaces – those theoretical and dark corners I don’t write about or share publicly (sometimes even with mySelf).  And 2) I invited her (physically) into my space (home) where the trappings of my disability live and are plainly evident.  I didn’t know it at the time but doing those two things, set in motion the events leading up to the silent detonation of a figurative ‘bomb’ that happened much, much later.  But I digress.  Let me tell you first, how this ‘bomb’ was made.

The Making Of a Bomb

The figurative ‘bomb’ was built one phone call at a time.  It was crafted by explaining to her the surface disabled things that most everyone thinks to ask because they can see them: what SMA is and what it does to me, how I live with and around it, what’s my prognosis. The innards of this explosive though, were made by her honestly wanting to know the mundane: how I go to bed, how I get up, how I use the restroom, how I shower, what it’s like to dress me, who helps, what do they do, how do they do it, what equipment do I use and need and how do I feel about all of this especially with her wanting to be a part of it now.

Rapid fire, she barreled through these askings much how I assume I barrel through anything I am curious about.  But she, unlike how I can be, was kind and thoughtful and waited for me to be ready to answer.  During our conversations I often found myself saying, “I don’t know WHY I’m telling you this… sigh…” cause I’d never told anyone really.  No one got far enough to feel comfortable asking or of me sharing.

But there I was, sharing the mundane and the dark.  In one breath I would rattle off the process for showering and in the next how I grieve loss of ability like the loss of a loved one.  How I organize my room/life to make others helping me easier and how I mentally manage the ‘costs’ associated with SMA overall.  She rode those conversations with me; moving and swaying in tandem with the change in course, easing back or leaning into the wind in equal rhythms, nary missing a beat.

It felt weird?  Having a companion on this toboggan.  I’d grown so used to riding it alone yet her presence, in spirit, felt familiar, comforting, like home.  It wasn’t until I had gotten through sharing my disabled spaces with her that the magnitude of what was happening began to dawn on me: I was letting her in because she came willingly.  Which could have only meant that mines was a ride she wanted to be on.  At first I likened the emotions around this realization to an unsuspecting tsunami – just this tidal wave of thoughts and feelings overwhelming me.  And I did have and still do experience those, (which is out of character for me because I hate crying that much).  But I was mistaken.  What I should have equated her willingly getting close to me to be was less tsunami and more an explosive…with a silent detonation.

The detonation device was forged when I invited her into my Home.  My physical casa, the place where I sleep and am my most disabled Self.  I allowed her to pass through my wheelchair accessible doors, using my automatic door opener.  I allowed her to walk through my wheelchair accessible living room, where she met my family.  I escorted her to my wheelchair accessible bedroom; showed her my wheelchair accessible ‘space’, my equipment – how I live.  And she sat at the edge of my bed after taking this all in, held both of my hands in hers, looked me in the eyes… and kissed me anyway.  The detonation device was complete at this point.

Nervous Ticks

There is this fear that lives behind my chest and in the recesses of my mind when allowing a potential partner into any of my spaces – that they will find being with me more than what they are willing to deal with and will want off of this toboggan.  They are perfectly within their G-d given rights as a whole human being, to do and voice that.  Philosophically, I am not opposed to folks being honest and up front about what is good and not good for them.  I encourage it, especially up front.  Emotionally though? I die a thousand deaths when they do it.  Especially if it’s someone I’m really into.  Because the devastation of having to pick myself up after that happens, is enough to make me not ever want to experience it again.  But here I was, with a new toboggan-partner, tempting fate, poking a live bomb.

The next week found Us exclusively in each other’s company, to eat, sleep and exist together.  All the things I had explained to her on how I am to be helped, found her doing them.  Mornings out of bed, mid-day having to pee, nights and their various rituals to get me prepped and ready for bed.  Food and having to navigate safe things to eat.  Eating and having to deal with some of my swallowing/chewing challenges.  She saw me in all of my disable-ness.  She saw me in all of my fragility.  She saw me in all of my skin.

Nervous Hands

It is in the fresh presence of things that we often look back and understand it’s devastating absence.  To say that this body had not known touch these past eleven years, is to lie.  Which I am not prone to.  Gloved hands with clinical precision touch me daily to position, wash and clothe me.  But to be touched and loved on?  For there to be no hurry, no end goal, no reason other than pleasures’ sake?  In my world of being disabled, that kind of touch was the stuff of long ago lost loves and unmet hope.  That kind of touch is a decision made, early on after the first heart break, to spare the other person a life of uncertainty, as much as myself.  That kind of touch had almost no chance of being resurrected.

Yet there She was, resurrecting Me like Lazarus.  Methodical in her attentions to these atrophied limbs, this meandering spine, this asymmetrical belly.  She remained unfazed by what she saw or encountered.  Singing hymns to the places no one dared call by name, much less acknowledged.  Her eyes, saw beyond the ‘shoulds’ of what this body could be and paid homage to what was and how it was good.  Whispering incantations during her ministrations over this untouched shell, she gave life to what had long ago been buried.    Just knowing that she loved Me and in loving Me meted out Her love to the crooked, the unable, the disabled in me.  She was church and this body was the temple where she worshiped.

Swimming through the baptismal waters of my awe at our moments, I held my breath in anticipation of it all going away.  Yet it never did.  Not when I had to pee in the middle of the day and she had to help me, not when I would wake in the middle of the night and she had to fumble in the dark for my water.  Not when my kidney decided to require cranberry juice and she had to go out in the early evening hours and get me some after spending all day out.  Not under the shower of her pained kisses, sore as her body was from unfamiliar motions in having to reach and adjust and care for me during the week.  Nor as she packed and went home at the end of our time together.  Her love and loving has yet to go away.

Triggered Heart

For all intents and purposes, there was no reason for the bomb (filled with her insistence and sheer will in loving me, rubbing against my fear that doing so would require too much: effort, life and resources on her part) to have been tripped into detonation.  After all, hadn’t she shown up, when so many others only promised to?  Hadn’t she been wholly unafraid to touch, nee, resurrect what so many had managed to step over and leave for done?  Hadn’t Her mere existence been the answered prayer long since abandoned upon my lips and my cool pillow during the night?

Despite all the good we had experienced together, I became grumpy and forlorn after she left, not understanding what exactly was wrong with me.  The tell-tale signs of the silent detonation and the ruin that lay in wake, peeked through my discontent: tears.   My sister, unaware of the wasteland that overwhelmed Me, asked ‘What’s wrong with You?’. My tears, salty and hot, traitorous and unapologetic disintegrated what little semblance of Okay I had left.

In the days after her departure, my mind, trying to make new sense of the new things we’d just experienced, stumbled across the Arc of My Life – that winding set of circumstances and decisions rendered that made up the Story Of My Living.  And not to be too far behind, my Heart came along.  My Mind, efficient as it’s wont to be, realized how much different my Life would have been, should I have met Her sooner.  Understanding the futile nature of this train of thought, My Mind just became glad to have met her now and began filing away those new experiences and making new connections.

My Heart though?  My Heart decided to lament.  It lamented how unkind Life had been, how lonely the journey was, how tough this ride turned out to be and how un-shielded I had been all this time.  My Heart threw on its mourning clothes and mourned all my loss of ability over the years leading up to meeting Her.  How I felt she was not going to get the Best Of Me because I am so unable to accomplish much physically anymore.  My Heart lowered the black veil of widows and broke Itself in half contemplating all She would lose out on as my Partner, now and in the future. My Heart leaned on the detonation switch as it wailed and set off the explosion.  It forced the idea of Her need to love Me and my inability to understand why, into tight quarters to make sense.


The fallout of those two things coming together is devastating and has threatened internal catastrophe. Sure, I miss her but her absence meant more now since we shared space together.  I existed as a whole complete human being without her before but this existence without her now, felt abbreviated.  I longed without longing, I mourned seemingly without any real provocation.  I ate without hunger and slept fitful and dreamless in the night.  I went through my life in a daze, half elated that She as a whole human existed and sorrowful that I was to be her reward.

My inner turmoil, rests in her love for Me. Her opening Love to me, love beyond my abilities, is such a hard action for me to completely accept and wrap my arms around.  Her and her brand of loving wasn’t something I was ever told I would be entitled to.  That kind of Love was for Other people; able bodied hiking people, people who could cook and get dressed without assistance. Not for short brown women whose arms can’t reach up to scratch their own noses anymore.

Debris Field

Yet here we are, reaching through the debris field for one another.  We’ve had many late night conversations about my fears and her concerns.  About how we should approach or handle my disability in the middle of our lives.  About how she is going to change her surroundings to accommodate Me.  And through each conversation, I keep waiting for the threshold to be crossed where things are ‘too much’ for Her to want to handle.

So far?  I haven’t hit it.  I’m not yet at the point where I feel I may never reach it.  I’m just glad it’s not now.

I wish I had a better ending, some happily-ever after closing that makes for a great feel-good piece.  Truth be told, both of our lives are complicated, involve physical distance and real grown-up things to consider, then handle.  I’m still sorting through my feelings and how to reconcile mySelf with the debris from this ‘bomb’.

For now, this is where I’ll leave things.