Things I Want To Tell You, But Can't

2,145 words

17 minute read

TW: Ableism

December 3, 2016 

Where do I start?

I want to tell you that by the time I got out to the parking lot, I was already tired.  That's not on you, it's just fact.  Walking out to open the front door, back to the apartment, and back out again is a distance that usually would require a rest on my part.  Not because I am lazy.  Not because I am out of shape.  But because it takes 5 times more energy for a person with CP to do exactly the same thing as [a nondisabled] person.

That means, standing out by the giant pickup truck and contemplating how to get in it for several minutes was even more exhausting.  Did you know that standing still actually takes more energy than for me than walking does?  I have to constantly think about keeping my balance and shifting my weight.  In no time, I feel like I am a giant, with a massive body and waning stamina.  Now add cold, which increases the tension in my body and makes all my muscles feel like they are fighting each other.  Now add slippery or even potentially slippery conditions.  Either way, that means I am nervous.  Fear means even more of an increase in the tension in my legs.  Moments like these, every ounce of my energy is focused on staying upright, not slipping, and contemplating how to reach a step that is up to my waist.  

Because there is no way, I accept a lift into the vehicle.  I lose my shoe and must put it back on before we get to the house.  I must also put my seatbelt on.  Both of these things now take so much more energy than they normally would, because I am already tired.

It's winter, there is snow, and I feel like an oven radiating heat and sweating as we drive.

(There is the Small Car - so ideal for me - available, and parked at the house.  But not used.  Because the pickup truck and its generous driver were already out.  Already on the road.  So you asked them, "Since you're out, can you pick up the girls?"  Except how can the girls do this?  How can we climb a giant mountain of a machine and still have energy left?)

Getting out of the pickup makes me feel like I am rappelling, but I can make it, if I stretch from fingertips to toes.  My 4'11" frame just long enough for my toes to meet the ground while my hand hangs on above my head. Crutches with slip proof tips.  Slip proof shoes, perhaps a bit stretched from too much wear and CP.

The front step is deemed "a little slushy" and I am advised to go in via the garage entrance.  This is something I do not usually attempt because it is nearly impossible.  But with no other option, I must proceed.  

The two steps are wooden, unsteady, and too small to organize my feet and crutches in any semblance of a way that might allow me to enter the house with a minimum of fuss.  The steps are narrow,  The step into the house, a bit steeper than the rest.  And in the house, nowhere with suitable traction to plant my crutch in order to finish climbing the steps.  

The entryway has faux wood laminate (slippery even with all my anti slip precautions, not even factoring in winter slush, snow and ice tracked in on the feet of nine people.  On top of all this?  An area rug.  The kind that skids with the slightest pressure.  Perfect for people who can keep their balance to wipe their shoes and boots off, but just one more obstacle for me.

(Reminder: It is still cold.  I am still nervous about falling.  I am essentially stranded standing still in an awkward position while trying to contemplate where to place my feet and crutches to allow me any traction at all.)  There is a foot to stabilize my crutches, but that means I have to talk and direct the foot where to go, all while trying to keep my balance long enough to enter the house.  In the end, I have no choice but to muscle it.  My legs are shaking.  I'm in the entry way, trying to keep my balance.

Now the six to eight stairs, also covered in wood laminate and all with an extra overhang of wood on each step.  I catch the toe of my shoes.  Lose one.  The railing is frighteningly loose.  I need it, but can't rely on it too much.  My legs feel like quivering Jell-O, but I have to keep climbing.  The rail does not extend far enough for me to clear the final step.  I'm offered an arm -- all but pulled -- so instead, I drop to my knees and knee-walk up the final step (bye, other shoe.)  Knee-walk across the laminate.  To the carpet.  No shoes.

Stand in socks on the carpet.  I don't do this ever.  Because I need the support of shoes.  But I don't have it.  I stand at the table and fight to pull a chair out (keeping my balance and staying upright without collapsing while doing so) because more standing.  I don't have enough mental energy leftover to call anybody out to help me, but when I see you walk by, I ask.  You pull the chair out.  No comment.  I sit.  Winded like I just ran a marathon.  Sweat rolling off me.  I ask if you can grab my shoes, a few feet from me.  You do.  Again, with no comment. 

I see you pass by.  Make a comment like, "Just trying to get my shoes on."  Without being asked, you are on your knees at my feet, helping me put my shoes on.  My feet - spastic and exhausted - are not cooperating.  I say, "You can shove them if you want."  You don't speak, but disapproval is emanating from you in waves.  I feel like a burden.  I don't want to lose my shoes repeatedly anymore than you want to put them on, but it's happening.  It's just one more thing that's happening and it's annoying.  I get it.  But your silent disapproval has me feeling like a burden.

I feel guilty.  I feel ready for bed.  Completely and totally spent.  But wait.  We haven't eaten dinner yet.  I take the opportunity to refuel, and rest up, sitting at the table as much as possible.

[Image: A Thanksgiving table, laden with food]

Just before it's time to leave, I decide to use the restroom.  All is going well until I drop something on the floor.  I try over and over to bend and retrieve it, but my legs are in danger of collapsing on me.  Finally, I drop to my knees and pick it up.  Take it to the trash.  Throw it away.  Wash my hands and try to stay upright at the sink (because more standing still.)  My legs are shaking again.  Past the point of exhaustion.  I lose my shoes for the third time coming out of the bathroom. Sit down in the closest chair.  Put my shoes back on again,

Now, it's time to go.  There's a random item at the top of the stairs, barely in the path of the railing and I ask Tara to move it because it is "psyching me out."  She does.  You mention the railing is "a little loose," and by now I am on the way down and can feel its instability as it shifts under my grip.  Now, even more exhausted than before, I know I have to say something:

"Yeah, it's freaking me out.  I don't want to, but I feel like I could rip this off the wall..." I hedge.  You hold the bottom of the railing against the wall.  Tara holds the top.  I descend.  I lose my shoe again.  You help.  Again.  I feel like a burden.  Again.

Leave through the garage door.  This, at least, is my usual exit.  However, it takes substantial motor planning and energy to descend these steps on my best day, and this?  Is not my best day.  It is also still cold.  And dark.  And there is a spider dangling from his web seriously close to my crutch.  My spasticity is at an all time high.  But I make it down these steps.  The spider that has tried to make a home on my crutch is removed.

Now, I must stand while the giant pickup pulls up.  It is beyond difficult.  I am running of fumes and the fear of total humiliation.  I contemplate again if there is any way for me to climb in.  After much less time, I accept a lift in.  And lose my shoes again (of course.)  In the truck, I put them back on.  Back home again, I rappel down out of the truck's cab.  Walk into my apartment building.  The hallway seems insurmountably long, even with its traction-friendly carpet.  My legs feel like they weigh 1,000 pounds each.  I force each one in front of the other.

I find my wheelchair inside.  Collapse into it.  Peel off my sweat-soaked clothes in favor of pajamas (exhausted sweat number three, if you are keeping track.)  I barely have the energy to converse and fall into bed at 8 PM.  My legs are shaking from sheer exhaustion of this two hour visit.

Two days later, I still feel the effects: sore back, sore arms, sore ribs, exhausted legs.

Eight days later, I find myself taking two naps in the middle of the day, because I am still recovering my stamina.

Today is day nine, and I feel I may finally be turning a corner.  I think I might be back to CP Regular very soon.

But two days of pain and eight days of brutal exhaustion for a two hour visit, where no one spoke to me, beyond "Pass the potatoes?"  It does not feel very fair.  In fact, it feels pretty awful.

I love you and I love seeing you and celebrating with you, and simultaneously, I feel so misunderstood by you.  Especially when we mention the most obvious barriers to accessibility (the pickup truck, the unshoveled step, and the dangerously loose railing) and hear excuses and blame in return.  What I should have done differently.  (Get new shoes.  Always go in through the garage door because the front will be slippery in winter.)  And most confusing of all: that I would not have known the railing was loose if no one said anything about it.

Maybe this is why my first thought when I came home last Thursday was "What is wrong with me?"  The next was, "I should have done X, Y and Z."  Followed by, "Am I out of shape?"  (Never mind that I exercise five to six days a week for a half an hour each day.)   

I want to tell you that when you remodeled, making the house less accessible while we were in college, it made me feel like you no longer wanted me there.  Like access was a pain and an eyesore.  Like what people might think if they saw a bar on the side of the bathtub or carpet on the stairs, was more important than me having a way inside that could save even a little of my stamina.

Related: When Accessing Basic Needs Is Anything But Basic

I want to tell you that having to work so hard just to come in the door makes me feel like you don't value me.  Like you don't value my safety.  My dignity.  My awareness of my own limits and what I can and cannot do.

I want to tell you that when you dismiss our legitimate concerns about lack of accessibility out of hand, I feel like a burden.  I feel like an obligation.  Like a piece to make the puzzle look just right.  Not a loved and cherished member of our family.

I want to tell you that I love you so much that this hurts and the last thing I want to do is hurt you but I can't come home for Christmas this year.  A two hour visit has taken me over a week to recover from.  I cannot imagine what back to back visits (Christmas Eve and Christmas Day) will do.  I love you so much but I can't risk my body.  My health.

I love you guys with all my heart and soul...but even if the front step was shoveled, the Small Car taken, the railing tightened, it would be too much at this point.  After being pushed past the point of exhaustion multiple times, I need to take care of myself.  So be on the lookout for a card.  For gifts.  For love.

But not for me.

Not this year.

***

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