Miscellaneous

Welcome To New York

**Author’s Note: My apologies for not posting as often as I’d like. Being in college has kept me fairly busy. **

Last Sunday 9/24 I took an adventure about three hours south onto the island of Manhattan, or as it`s called around here ” The City”.  The assistant manager of the house I live in had been assigned by corporate to chaperone two ladies from the agency`s apartment program; she agreed under one condition, that I could go too. After inviting me she then spent the next few days assuring me our traveling companions were “cool” and that I would probably get along with them.

The following days were filled with making reservations for the Sugar Factory an elite restuarant known for insane 60oz drinks dubbed “the goblet”, celebrity clientel, and a selection of candy that rivaled Willy Wonka. Because trains are expensive on a fixed income my assistant manager who is a Queens transplant herself, offered to drive. This meant that although we were saving money I wouldn`t be able to bring my motorized chair, which was a good idea anyway.

Transfering me into the mini van was the least of our worries because as long as I have my AFOs (ankle foot orthotics) on I can stand-piviot transfer with some help. Our real fear was that we’d run into bathroom trouble; if you’ve ever been to the city you probably noticed public bathrooms aren’t really a thing there. This poses a major problem because you can pretty much count on my needing to pee every two to four hours like you can count on the sun to rise. So that meant I had to keep my food but especially fluid consumption to a bare minimum, oh and did I mention it was about 90° F that day? I didn`t eat or drink anything from 7:30 that morning until about 5:30 that night. I had to purposefully severely dehydrate myself because of NYC’s general lack of public bathrooms.

While on our 45 block trek uptown in the blistering heat I was nearly tipped from my chair 50+ times because of potholes and uneven sidewalks. Why on earth did we walk nearly 8 miles both ways? Because, it is simpler and faster as well as more wheelchair friendly than navigating various accessible subway entrances scattered throughout the city.

Overall, I had a wonderful time and would do it again but it’s not a trip I could do by myself. And if it weren`t for the Toys R Us employee that graciously let me pee in the employee bathroom after drinking the majority of a 60oz mojito, I would’ve had wet pants. In general though, NYC needs to step up their accessibility.

 

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.

Why I Will No Longer Apologize For Making You Uncomfortable About Addiction

*Author’s Note* This is a post in response to the social media backlash I received after posting my now deleted post “The Magician The Addict: An Open Letter To Those Enabling Addicts Everywhere” 

To those I previously offended, outraged or embarrassed with my previous post, I’m not really all that sorry.  Instead while I take the time to write this post more are dying from opiates and even more are in denial about either their use or the fact a love one is using.

Last time I checked this is 2017 long gone is the era of sweeping bad things that happen to us under the rug and ignoring them much like an unattended pot until it boils over. By sweeping so called “family business” under the rug to never be spoken about until it’s far too late these people are being even more enabling to the addicts they love. Shovel more dirt on the grave.

I was berated and criticized for my opinions and voicing them publicly as if  the facts weren’t talked about they’d go away. Opening up a discussion about topics such as these is crucial and I’m not sorry if you’re uncomfortable, that’s your prerogative don’t shove your insecurities down my throat. I was told to “remember all the times those who I love with addiction helped me” and I do remember those times so it is with nothing but love for those I love that I try to help. But there were also the not so good times and those have a more lasting impact. Ignoring the problem and shutting those down who try to bring them to light is no better than pushing the plunger down on the needle, giving them a straw, a spoon whatever it may be.

We can not ignore problems that make us uncomfortable. Instead of enabling we must help. But often times we are ready to help sooner than they are ready to receive, so we can only offer rides to meetings, prayer, a friendly ear until then. But denial helps no one one.