Posts

Uncertainty in These Times

Uncertainty in These Times

I’ve been through a lot these past couple of months. Everything from personal matters such as losing my childhood friend and going on my first business trip to matters concerning my CADI waiver and disability services, new PCA services and ILS services hanging in limbo and then adjusting to new and hopeful changes.  Read more

When Needing PCAs Make You Feel Less Grown

When Needing PCAs Make You Feel Less Grown

It can be a strange world when you need PCAs. There is a lot of depending on people, their schedules and the stress of everyday things coming up that will without a doubt affect your life. Whether it’s their tire reading low, forgetting to set their alarm because they went on a bender the night before or simply having a kid that is sick, how you get in and out of bed everyday all depends on this stuff. Read more

Neglect and Powerlessness

Neglect and Powerlessness

It’s 7:00AM. My alarm went off at 6:15AM. My bus for work comes at 8:45AM. Forty five minutes later and I still hadn’t received a phone call. I am unable to go to work. My PCA didn’t show up. I am unable to reach a phone number, get an office voicemail. Read more

Paralyzed by My Paralysis to Travel Overseas

Paralyzed by My Paralysis to Travel Overseas

Humans are naturally afraid of change. We’re afraid of trying something new and we’re afraid of encountering new things…most of us are anyways, and this is especially true for all of us living with paralysis. There are so many things that we cannot do that we become rigid in our ways. It’s like a big protective the turtle shell. Read more

When Hiring a PCA, Find One You Would Hang With

When Hiring a PCA, Find One You Would Hang With

When you’re taught how to manage your PCAs, one of the first things they always tell you in rehab is never make a PCA friend. You always wants to keep the relationship between you and your caregiver professional in case things get dicey. It makes sense; I get it. Read more

When You’re Paralyzed, OCD Follows

When You’re Paralyzed, OCD Follows

I’ve had an unbelievably high number amount of nurses and PCAs in the last 23 years all tell me the same thing – I’m not the first quad they’d ever met who was finicky about how straight their pant seams were. And this is just part of my idiosyncrasies. From wanting books on tables angled certain ways to wanting every label to all face forward, my OCD-ness is real. Read more

Got Stress?

GOT STRESS?

His cry wakes me and my heart skips a beat then pounds in my chest. Not awake again?! My mind starts going down the mental list of things I had planned to get done this day and if I can juggle it all while being tired. Read more

So many things can go wrong and leave you stranded, like your wheelchair breaking or a PCA not showing up, and other situations in general become more stressful too after a SCI. I know for me personally social interactions, like going to a wedding or a house party are really stressful experiences. I'm always worried about one single thing - will my wheelchair weird them out? I know I'm not the only person out there who feels this way. When you go from being the person who can walk to the wheelchair person, it can be a very difficult transition. I've found that living a calm stress-free life however is key in making this work. This can be really difficult for some people. There are certain types who just attract crazy situations. Maybe this is you. I don't mean to offend (or maybe you don't even realize it). But you may be one of those people who feels more alive when chaos is happening around them. And when you're living with a spinal cord injury, in a body with diminished sensations and movement ability, reaching out for crazy things like adrenaline-filled situations may make you feel more alive. It just makes sense. There have definitely been several times in my life when I've found that zing when “crazy” is happening. It's not necessarily a good feeling, but it can be addictive. Since I've been paralyzed for so long, I've had to learn this the hard way too. You must be wary - when you wake up every morning you only have so much energy and patience to allot to the world. You need to conserve and use when needed. As a person with a disability you sometimes attract the wrong people. People will see you as a sympathetic ear or they'll take advantage of you because they see you as weak. Prejudices abound against those who use wheelchairs. You need to get good at reading people and deciding if they have true intentions towards their relationship with you. And on the same token, make sure the people you surround yourself are positive and not prone to drama, from fights at work, with their family and trying to draw you into them; especially going on about drama-filled situations that really don't matter. Most of the time all they just want you to do is just sit there and listen to them rant. The moral of this blog post is quite simple - if you want to live happily after your spinal cord injury you need people who hate drama in your life; strong willed & minded people who don't thrive off crazy situations. It's all about who you surround yourself with at the end of the day. That is one of the most important things you’ll do. And I hate to say it, but if you use PCAs, the likelihood of you running into these types of people is higher. It's always polite to be a good listener, but don't allow yourself to be taken advantage of, especially when they're working their shift. You can always be a therapist after they are done working for you. Do you feel like you attract crazier people and situations after your injury? Picture courtesy of Flickr

Another Important Life After SCI Tip: Keeping the Crazy at Bay

So many things can go wrong and leave you stranded, like your wheelchair breaking or a PCA not showing up, and other situations in general become more stressful too after a SCI. I know for me personally social interactions, like going to a wedding or a house party are really stressful experiences. I’m always worried about one single thing – will my wheelchair weird them out? Read more

Low Wages and PCAs: Staffing Crises Getting Worse

Low Wages and PCAs: Staffing Crisis Getting Worse

Everybody is trying to better their life somehow, especially when it comes to their career or job. This is what all of us do, especially if you live in the United States. It’s good to have a job that pays you decently, I don’t need to tell you that. This is one of life’s biggest pleasures. Making a living wage, being able to pay for your rent, all of your bills, food, gas and still have money left over for fun, this is the dream. Read more