August 2017

No Place Like (Group) Home

I live in a group home and have since March 2016. It’s a very nice place and has done wonders for my independence, but it isn’t home. Home is about 25 miles away, which is about 20 minutes maybe a half an hour if you’re a slow driver. For the first twenty years of my life I lived in the same house my parents had moved into around ’95 when I was an infant and later bought from my grandparents in the early 00’s. My dad, his wife (who is not my mom, but more on that later) and younger brother still live in the house I grew up in where I still visit when I can.

Home is where my mom succumb to a near decade long illness and gained her wings. Home has been the backdrop to one wedding, countless birthday parties and 20+ years of memories throughout the family. But if it weren’t for some people who loved me enough to both metaphorically and literally push me out of the nest Home is where I’d still be, not really living just existing among familiar walls.

It is on nights like tonight after a day with my family, a part of me longs to go home. Watching my dad leave down the driveway of the group home is always hard after spending a day together. It’s an act that brings me back to the day about a year and a half ago where I begged him with every fiber of my being to bring me back home. My first days here were the worst days of my life.

Don’t mistake my ocassional yearning for the familiar as a dislike for my new life. I love my life now and feel as though I’m becoming who I’m supposed to be. I often think about what would have and wouldn’t have happened if my family had given into my pleads. Home is a nice place to visit, but every plant needs to be replanted to grow eventually.

Car Rides And Chronic Pain: A Weekend With Cerebral Palsy

This past weekend my family and I journeyed about three hours north to Vermont where a surprise 75th birthday party was being held in honor of my grandma. Overall a good time was had by all until we began the trek home mid-morning this morning. It wasn’t until my dad was lifting me back into the car after our late breakfast at a hole in the wall diner, that the burning started.

At that point, I had probably been lifted close to a hundred times throughout the weekend and spent a fair amount of time in a car. Neither of those things bode well for my legs, even though some sort of pain is my constant companion. So we were about an hour or so away from home and ignoring the pain was no longer working. My dad had stopped at a Cumberland Farms gas station to get a drink when I dissolved into tears.

Because she’s a mother and obviously doesn’t like to see any of her children in pain my step mom offered up some ibuprofen. Through my tears, I attempted to explain that ibuprofen wouldn’t help the fact that my legs felt, and still feel as I write this as if they are simultaneously asleep and on fire.

There is no magic cure for the near constant pain associated with my Cerebral Palsy. This is not a disability for the faint of heart. Today is one of the countless days I’ve had throughout my life where I don’t want to do this anymore.  I’m totally over being wheelchair bound. Does anyone else want a turn?

Restrooms This Way: What the bathroom is like for wheelchair users

Picture this, it’s 2am and you’re woken  with the urge to go to the bathroom. So, what do you do? You more than likely get out of bed and shuffle to the nearest bathroom returning to bed minutes later. But if you’re like me and so many other members of the disabled community a late night run to the bathroom isn’t so simple.

Now picture this, it’s 2am and you’re woken with the urge to go to the bathroom. What do you do? First, you scramble for your phone in the dark and fumble to unlock it.  Scroll through your contacts as fast as possible and find the number for the front office at your residence. The phone will probably ring a few times before someone answers and then you’ll have to mumble through sleepiness what you need.

Within minutes one of the female staff will rush in and begin the lengthy process to get you out of bed. You’ll be hooked up to a lift with various buckles and straps and if all goes well you’ll be lifted and wheeled off to the toilet.

Sometimes though the lift doesn’t work and the process will be prolonged. Then the writhing starts in an effort to hold yourself, the process often is mistaken for seizing but it isn’t. If the lift doesn’t work a stand pivot transfer will be needed which in itself is a process.

The point of this story is the fact that I’m incapable of using the toilet by myself. A fact that is extremely annoying some days. I’ll be twenty two and have never used the bathroom by myself. So yes, that means sometimes I can be found in the men’s room with my dad. Sometimes that also means that my brothers need to lend a helping hand. I always say that if I were to become able-bodied tomorrow the first thing I would do is go to the bathroom by myself.