~ A memory by Meg Bernard; sgWpd
My name is Meg; I’m a 39 year old mother of three and I have Parkinson disease.
I have been trying to think of a way to describe what it’s like to have such a disease; the best idea I came up with is to immerse you all in an experience a person with PD, who is attempting to do something many see as an “everyday task”, might have, thereby giving you a small taste of what living with PD is all about. So without further ado; I bring you the true life story; not in the slightest bit exaggerated; of a visit to the mall….
**I will set the stage…3 1/2 years ago…a 10 minute drive from my house**
My son needed jeans; kids grow, darn it; and as he has autism he has a tendency to be very specific about what he wears; it’s Old Navy jeans or nothing. But this actually worked out well because I had to go to “The Mall” anyway to visit the Disney store…you see, this was the first year ever that I was purchasing my kids Halloween costumes; once upon a time, pre-Parkinson’s, my hands could easily create a dozen costumes in the month of October; it was my fun; my joy! Alas no more…in an attempt to find a bright side; the employees at the Disney store did wish me “a magical day”. They don’t do that at the fabric store.
But this visit to the mall had another ‘first’ to it. This would be my first public attempt at getting around with my latest accessory, a cane, to which my kids gave the name Jim. I was curious to see how that would go. So I set out to the mall; ready for an adventure.
Store #1 was the Disney store; I quickly made my purchases and, with ‘Jim the cane’ in one hand, my purse slung across my body, and two bags in the other hand, my initial assessment was “Awkward yet doable”.
**FREEZE FRAME** It seemed to appear out of nowhere, with a ‘dreamy haze’ around it, kind of like in an old movie…THE DRESS…a stunningly beautiful, elegant dress that was EXACTLY my taste and style! I could picture myself in it…with the addition of my black, ripped leather jacket, fishnet stockings and black combat boots (to know me is to understand my wardrobe choices).
I entered the store and discovered that THE DRESS was out of reach even for a normal human being; let alone one of my ‘vertically challenged’ stature; so I asked a clerk to use her ‘magic pole that you can only use if you work there’ to get one down for me. She asked for sizes, assuming that I would be trying on a few in order to find the perfect fit…
**FLASHBACK** I’m standing in a change room, ‘frozen’ (Parkinson term that means exactly what the word says); having to ask a clerk to come in and help me take off the dress I was trying on (I’m still waiting on the invention of a time machine to erase that special moment).
…”Umm, give me an extra small. I’m not trying it on, I’ll just take it” I say. With a look of horror on her face, she announces to the entire store, “YOU’RE NOT TRYING IT ON??” With great self control I managed to keep my thoughts to myself as I continued to try and maneuver to the counter with “Jim the cane”, two bags, a purse and now a dress.
While all this was occurring, the PD dragon had begun to sneak his way onto the scene and my temor had increased to the point where I was unable to insert my debit card into the machine. Many frowning and disapproving faces were beginning to stare; after a deep cleansing breath and with a genuine smile, I asked,”perhaps you could help me?”
Then came THE ESCALATOR…Four words…“moving stairs of death”.
I finally reach Old Navy where I discover that the jeans I need are on the bottom shelf; which requires bending; which I could not do safely. I ask five clerks to help me, but each was too busy…After 20 minutes of attempting to get get assistance ‘Meg, warrior princess’ took over and before I can regain control I find myself announcing, in an extremely loud, yet very pleasant voice, “excuse me everyone, but if don’t receive help in the next 2 minutes I will have no choice but to perform a rousing rendition of “The Star Spangled Banner”…I don’t know why I choose that song, I’m patriotic and very proudly Canadian; but when ‘the warrior’ has been released there is no telling what will come out of my mouth…I had clerks by my side in a minute flat; apparently they weren’t interested in having a concert in the middle of the store.
Enter THE LINE. 25 minutes of leaning on “Jim the cane’ while balancing 3 shopping bags, a stack of jeans to purchase, my purse…when suddenly the unthinkable happens, MY MEDS WEAR OFF!!! The Dragon floods my body with a vengeance; rigidity kicks in; I lose my balance and bump into the lady in front of me; she turns and glares. I feel a panic attack building so I use every calming strategy I have ever been taught or heard of. When it’s finally my turn it is with small shuffling steps that I make it to the checkout; once I arrive, my arms are so rigid that I can’t actually put the jeans on the counter. The lady looks at me expectantly; with the dragon holding my tongue I manage to stutter out that she will have to take them from me…
…I see the way she looks at me, I’ve seen that look before. What she sees a hunched, crumpled, rigid and shaky old woman trapped in the body of a 36 year old. She sees a woman whose hands have become claws; I have to ask her to go into my purse, take out my wallet, remove my debit card, have her side it into the machine as I announce my PIN to the world so that she can punch it in for me. Yes, I’ve seen that look a thousand times…PITY.
I shuffle out of store #3 with “Jim the cane” being heavily leaned on, 5 shopping bags, and my purse, once again, slung across my body.
A lady, in a hurry, runs into me and sends all my things toppling…including me. Everything is everywhere. No one stops to help. I’m so exhausted and emotional by that point, that I would have offered money…or my first born (sorry sweetheart)…for someone to show some kindness; but it seems that everyone has someplace better to be that day.
I feel the hot tears burning in my eyes; but I stop; I breathe; I carefully get to my feet; then I begin to pick my things up one item at a time.
Once I’m loaded up and moving toward the door, I feel a moment of accomplishment. It is in the next moment that I hear a voice say “cripples shouldn’t go to the mall“…my heart feels like it’s being ripped from my chest; I can’t catch my breath; I stumble and lightly bump into someone who looks at me rudely and mutters “watch where you’re walking b****” I feel the burning sting of tears aching to fall, but instead lift my chin and keep walking.
My armload of bags, my purse, “Jim the cane” and the rest of me shuffle slowly toward the exit, wanting more than anything to be in my car and on my way home. I reach the doors and find that the buttons that should open them automatically aren’t working, causing my graceful exit to be less than graceful; but still, thankfully, an exit.
I head toward my car, which is not parked close because all the handicap spots were taken (almost half by cars without handicap placards) and I breathe a sigh of relief as I make my final approach.
KEYS!! Yes! I actually planned for this! I had them set in my pocket so that I could easily grab them and press the button that opens the hatch aaaaaand…I drop them.
That’s when it happened; I give warning that this may shock many of you; I swore. I did. Right there in the parking lot “DAMN THE MALL AND EVERYONE IN IT!!” Followed by a scream so loud that my children back at home probably heard it. “Ohhh am I going to be scolded by my son when I get home” is my next thought.
But then something else happens, I start to laugh. The hilarity of it all hits me and I laugh until tears pour down my face. I recalled my ‘glory days’ as the ‘expert teenaged shopper’ who lived to try on clothes, and loved the feel of shopping bags in her hands; and in the midst of my laughter I took an honest look at myself and I realized, I wouldn’t trade who I am now for anything.
Bruce Lee said, “Don’t pray for an easy life. Pray for the strength to endure a difficult one“. Now I know why. This is the woman who I want to be, “for no matter how hard the world pushes against me, within me, there is something stronger, something better, pushing right back” (Albert Camus)
As I stood there laughing, I intentionally dropped all my bags on the disgustingly dirty ground, worked at and succeeded in picking up my keys, put all the bags in the back of my car and drove home smiling. Why was I smiling, you may ask? Well, at least I hadn’t needed to use the bathroom!