WHAT, ME WORRY?

When I was in school the buses that transported us were not equipped with wheelchair lifts. If a child was unable to walk they had to be carried up the bus steps to their seat by the bus driver and a child-care attendant. 

I wore leg braces made of metal and leather until I was thirteen. I wasn't really heavy. I was heavy to lift.

I remember the first time someone said I was heavy.  I was eleven years old. I was in the hospital preparing to have surgery on my legs. I was weighed A so before. I weighed eighty-nine pounds. I remember someone saying I was heavy.  Whether the person meant heavy in pounds or heavy to lift I didn't know. I was too young to understand the difference. All I knew was my weight was not good.

I kept my weight down to make it easier for my mom to take care of me. I believe this is part of the reason that she was to care for me by herself until she was eighty-seven years old.

My mom never denied me anything. We ate healthily. Sweets were okay in moderation. Unless we were getting Ted Drews Frozen Custard on a warm summer evening. On those nights moderation was forgotten replaced by my love of a Ted Drews pistachio concrete. http://teddrewes.com/ And, Lucky Charms, where have you been all my life? How is it that I just discovered how "magically delicious" you are in my sixties?

I lost a lot of weight when my mom passed away. I was underweight when I entered the nursing homes. I have maintained a healthy weight for the past seven years.

Depression, loneliness, and isolation are quite a combo. Before I knew it ice cream and mashed potatoes had become my best friends.  I still try to eat healthily, but comfort food tasted so much better than a salad.

When I was weighed several weeks ago my new chair weighed in at 500.5 pounds. Whoa!!  My old chair did not weigh nearly that much. The staff was not able to get an accurate weight on me. i never want to be too heavy for my caregivers. But there is also a little voice in my head that's now saying, "screw it. You've kept a good weight for the majority of your life. Give yourself a break. Enjoy yourself" A few pounds is not the end of the world."

I worry about everything. What will the staff report about me? I  am constantly replaying conversations in my head. Praying I have not asked the wrong question or said or done the wrong thing.

Life is short. One day we are here. The next we're not. I have always been a worrier. I care too much about what others think of me. 

I am going to listen to that voice in my head. I am going to enjoy myself. 

The most important reason not to worry? Worrying causes wrinkles. Who needs those?

EMPATHY....IT'S NOT JUST FOR CLIENTS ANYMORE

 I am sure those of us who rely on caregivers for assistance have horror stories. One of our biggest fears is being trapped in bed because our caregiver did not show up. Guess what? Our caregivers have horror stories, too. 

We rant and. rave. We write posts. We use social media to let everyone know we deserve caregivers who will provide our care however we want. It's our life, not theirs. Our caregivers have no idea what it's like to be us. Dependant.

That's true. Our caregivers do not know what It's like to be disabled. They don't know what it's like to be dependent on others to be able to live their lives. 

 

Here's something I bet a lot of us with disabilities never thought about. 

As clients, we have no idea what our caregivers' lives are like. They come to work in all kinds of inclement weather. They show up when they don't feel well. If the weather is a mixture of dangerous cold and snow, making driving hazardous, a caregiver may become trapped at work. A carryover got stuck here this week. She was away from her family for two days. The families of our caregivers make sacrifices, too. This is something I had never considered until the recent winter storm. 

And, let's remember all the intimate and, at times, disgusting things we ask them to do for us. Do we even realize it? Do we just expect it? A human being's bodily functions are natural but gross. Not everyone can or should be a caregiver. Caregivers are special people.

This post is dedicated to all those individuals who provide care. Group homes, nursing homes. hospitals or in-home care. The location doesn't matter.

 I just want to thank you. I get it now.

 Empathy...it's not just for clients anymore. 

WHAT'S THE SEXIEST PART OF THE BODY?

What's with some disabled people posting nude or semi-nude photos of themselves on  Instagram? ' And then there are the intimate posts about their sex lives or lack thereof.  

These posts have left this golden girl on wheels scratching her old gray head. and thinking to herself, what the heck?

I  don't need to see a photo of a disabled woman or any woman, holding a sex toy unless I am watching an episode of Sex and the City   Message received. People with disabilities are sexual beings. 

To these posters let me just say, I understand the concept of loving your body. That doesn't mean flaunt your body. In doing so you'll get attention, but it might not be the kind of attention you were hoping for.

All of us, disabled or not, have bodies that are different, shapes, sizes, and colors. We are all unique. If someone makes an ignorant comment about a disabled body person's body It's on them. Not the person with the disability. I used to think those of us with disabilities were here to educate others. That was our purpose. It's not. Our purpose is to live and enjoy our lives We do not have to explain ourselves to anyone. Education is needed. Educating is a burden. It is exhausting.

The part of someone's body that I find attractive is their brain. Someone who knows more about a subject than I do. Someone I can learn from. Knowledge is sexy.

At the end of the day, risque photos won't matter. neither will intimate posts. The knowledge one possesses will  

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A COMEDY OF ERRORS

A big thank you to the staff. All three of us git our first dose of the Covid vaccine today.

 Getting to and from the office was truly a comedy of errors. The house van transports two of us in our wheelchairs comfortably. Fitting three wheelchairs in an accessible van only meant for two takes some serious maneuvering

The staff had no choice. With only one van and an eleven o'clock appointment, it was the only thing our staff could do. They were pros. Superheros  Wonder Woman's got nothin' on these ladies

The staff moved us this way and that way. Our chairs got caught on each other. The conversation between our staff went something like this:

"Move her to the left."

"Back her up z little."
"Watch her feet."
"Just a few more inches."

Legs were lifted. Toes crunched. Feet were bumped. Add our driver and the SC to the mix and well, let's just say the expression can of sardines has taken on a whole new meaning for me.

My housemates took it al stride.  As for me, when I heard my toes crunch and my knee crack I freaked out. Chalk it up to old bones and arthritis, Can I help it if I have a low tolerance for pain?  That's a nice way of saying I am a wimp.  And, when my footrest became caught under the driver's seat and my chair would not move I had visions of spending the night in the van. I worried needlessly. It was not easy. but after several minutes, our staff freed my chair. I am mobile again.  Thanks, ladies. You rock.

The vaccine?  The shot was painless. Our second dose is in three weeks.

 Today's adventure would make a great comedy. 

Ya think  Maysoon Zayid would consider playing me?