Well, this drawing is kinda old, but just getting around to posting it. There seems to be much bathroom talk here, but don't worry, I will spare you all the gory details. We never seem to recognize the most mundane routine of our day to day - until it stares us in the face and commands utter and complete attention.
"Look at me, look at me!!"
There's been many times where I have found myself stuck on the toilet pleaing and crying to my body to, "please get up". Throughout my days I absolutely dreaded the Porcelain God and that nagging urge to peepee. I would literally be in FEAR of this routine act.
As my progression has evolved the style in which I rise from the toilet has evolved over time.
I always remember that day in Dr. Seidel's office in 2002 when he asked me, "Can you get up and down from a seated position?" as he filled out my chart with checked boxes and notes.
"Ummm, well yea, why wouldn't I be able to?" as I arrogantly demonstrated getting up and sitting down on his office chair without a blink, without assistance, without even holding onto the arm rests.
Over time that has obviously become more apparent and my getting up and down slower to non-existent.
I've adopted the style of using my hands, arms and legs to push myself up from a chair to literally throwing my body onto a table with my face squished onto the surface and then slowly, and ever so carefully, pushing myself up consciously utilizing every muscle available.
Even thinking about using a public bathroom alone has become a nightmare. A year and a half ago I could use the public bathroom at my work. If I am familiar with the surrounding, I can wiggle and create a magic routine until my body gets used to the situation. My left hand grabs the handicap bathroom rail, my right hand resting on the toilet seat pushing my body up at an angle ad as soon as I feel my hip lock, with every muscle I had left I did my best to push myself up slowly with an assistive and constant mutter, "please don't fall, please don't fall."
Nowadays, going to a public bathroom alone is non-existent. However, my home is a place I can have a little more control over and outfit to fit my body's changes. Every new bathroom I must take in account the size, what I can grab on, what I can lean on...before drafting a plan.
My last bathroom in San Francisco was pretty small, which was a good thing, because I relied on the wall and the door that was situated right next to the toilet to assist me up.
When I first moved into that place, my bathroom style was; grab doorknob with left hand, put right hand on toilet, wedge foot in between the door and wall, that way I could pull the door closed while lifting, and my foot the barrier that I could push my foot against the door and use as an extra weight to push up on.
This was shortlived. The toilet too low for me to get up by myself. Plan J.
Then I bought a plastic toilet rise that gained me an extra 6 inches of height = less height for my legs to push up to. This worked for a very short time. My wrists had gotten weaker, along with my legs, and I would find myself stuck on the toilet, alone...crying to myself and to my little Pippi in the most broken hearted sob. I had alot of downtime to think in the bathroom...I created stories in that very quiet space imagining the bathroom tiles, the light peering through the window, the walls, as something more than what they were.
I soon put a wood stool in front of me, so I could push my body onto it and lift with my legs and arms while having a sturdy table beneath me. This became a tricky scenario and each time I prayed I wouldn't fall, making it up each time by the skin of my teeth.
My latest bathroom style is this very wonderful electronic toilet lift. I didn't know it existed. I push a button and it propels me up towards the heavens in a very slow, yet breezy, adventure. Weeeeee! It's called the Neptune Toilet Lift, but here are many different versions that do the same thing, and I seriously fell in love with it when it arrived in a great big cardboard box. I wanted to hold hands with it, I loved it that much. It became more than a piece of equipment, yet a doorway to some independance and I personified him into "tushpush.2000". Christmas in July, indeed. I thought I was pretty neat stuff rising and lowering in the air. Where there is a will, there is way. Don't ever give up...
I know, this is supposed to be a blog about disability, and my thoughts on it, and yet there's always all these food pictures on here...how does that relate to it? I know, right? Well, it does, because it has to do with the person living out the disability and the disability itself.
Again, it's been awhile since I've posted. I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.
As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard. My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours. Like many grandmas she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandmas love for the open door policy as she greeted guests with welcoming arms. She always had some kind of dessert or Entenmann's in the bread box for those "just in case" stops. She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.
Holidays were always a big deal and her Thanksgiving dinners is something I really miss. She cooked everything and every year would have nine different pies-all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. I only being able to stand for shorter periods, she would make the squash, cranberries, etc earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday. I remember she would scoot around the kitchen in her walker, and when I'n cooking I experience what I saw in her. She didn't want to sacrifice a dish so figured out ways to outsmart her body. I myself have adopted this tactic. I sometimes cook big patches and freeze it or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I may cook over an entire week-doing a little here and a little here. It cuts down the stress on my body as it progresses and can't handle as much. But, darn
As I spoke during her funeral I recalled our disabled mock races. Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker. Neither of us were in good condition to be helping each other, but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she. I was young, she was old.
I guess I would have to credit her with the absorption of some of my characteristics.
Sometimes I think of her while I'm cooking... I have alot of time to think while cooking. Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps. When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing. At times a Julia Child accent would creep in...ok, I still do this today.
"You'll never know everything about anything, especially something you love." Julia Child
I could never explain how truly torturous it is at times to not be able to move like I remember and at times it stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it. They'll listen, but then able to go about their life, hopping on their bikes, running, driving...the skies the limit, and I'm stuck with myself in the stillness of my body, the same before they came, while my insides come raging out in deep want. But, it's a temporary feeling... There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability. Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable , most fear driven section of ourselves. I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want. That is the greatest way to learn, to be told that you can't have something.