Category Archives: Spinal Cord Injury

Living In an Imperfect Place, During a Remodel

My living situation has been quite calm over the past years, so the tile demo in my bathroom earlier today is still having quite the frazzled effect on my nerves. So. much. noise (ouch my ears) and the dust….oh the dust. I’ve completely forgotten how unpleasant a remodel job is. I can dust mind you despite my paralyzed hands, it’s just….non-stop.

See, when you live in a place while it’s being remodeled, there’s a ton you learn along the way, and this is especially true if you use a wheelchair. My place is a 1 bedroom/1 bath condo. I moved into it seven years ago and it was completely revamped for my wheels (the bathroom was enlarged and the kitchen was gutted), and now….I’m looking to sell.

The reasons I’m selling are complicated, but the taxes in my area are definitely the biggest reason I’ve decided to move. Now finally, all those episodes I’ve watched of House Hunters can be of use. And the main thing I’ve learned – if you want a good price, you need to offer sellers a high-end bathroom. Hence my remodel. And to save money, I’m having family help.

Today was Day #1 of the demo and so far so good, minus the dust and noise complaints from neighbors of course. Oh, and the little foible of not being able to shower again for three more days (hellooo bed baths in the interim). At least we were able to rid my entire bathroom of tile in a few hours, roll-in shower and everything. And I must say, my bathroom is looking like a wreck right now. Granite slate and pretty white marble tile however in my future.

Part of the remodel to sell will also involve tearing up my carpet and installing wood floors. I had a grey Berber carpet installed a few years ago (to hide spills, chair marks, everything) and it worked like a dream. But to reallysell a place, shiny wood floors are the way to go, and that is up next, after the bathroom remodel. Also, we plan on marketing my place to a wheelchair-using seller, so wood floors are a no brainer.

While living with my carpet over the years, I put a Persian rug over one section of the carpet in my living room and while doing so, I realized rugs and wheelchairs do not get along. So I tried to find a solution and came across one of the best products for wheelchair-users – Robert’s Indoor Carpet Tape. This crazy tape can hold a rug down flat for years once it’s in place. Never again will you have to worry about a rug lifting up and getting caught in your wheels when you roll over it. Rugs have no chance against this stuff. Love it.

And another tool that’s helped me like a certified ninja to prep my place to sell is Mr. Clean’s Magic Erasers. These little guys, after you get them damp, can remove any marks you’ve made on your walls. As a wheelchair-user and a powerchair-user at that, I make lot of marks. Going too fast around a corner, my footrest nicking the molding on my bathroom door the millionth time, walls marks and me are old buddies.

But for about $4, you can remove nicks and more without a single drop of paint. While holding one of these erasers myself is a bit tricky (they get smaller as you use them, just like an eraser), I have a PCA or family member help me do it. A few rubs and voila, your bad driving never happened.

Day #2 begins bright and early tomorrow, and the dust will fly once more. The biggest thing you really need is patience during a remodel, and I think this will be one of the biggest things I learn most over the next few weeks.

What lessons have you learned while remodeling?

Photo courtesy of Garann

Aging gracefully despite the “easy wheelchair life”

My friend Carrie, also a wheelchair-user, but not from a spinal cord injury (she has cerebral palsy: moderately so and can push herself in a manual chair), is a my only friend in a wheelchair who lives in my area. We met one another at David Bowie’s “Reality” tour in 2005, and she’s a woman with some mighty keen insight. 10 years older than me, she looks about 28 years old.

See, Carrie has this amusing theory that people who use wheelchairs from childhood on up, end up looking younger than their real age most of their lives. We live a “soft life” she theorizes, because well, for many of us we have no other choice. Spending hours in the sun working for example, not many of us could do that even if we wanted. So we end up with the skin of an angel, and love it or hate it – getting carded into our 40’s.

BUT…but….some of us ladies in chairs still worry about aging. Even I know, despite my wheelchair life, that aging is inevitable. So…since I like to be prepared, staving off aging has been a concern of mine since my early twenties. I started my “Be Smart with Your Skin Care” regimen at age 22, with Oil of Olay + sunscreen St. Ives Apricot Scrub being my big two.

I first began using Oil of Olay after using Lubriderm lotion on my face for several year. This is body lotion; an amateur mistake on my part. When I began to notice my pores were bigger than they should be and my skin was looking ashy, I knew I was over-moisturizing and needed to find a lotion made for the face. It felt old making this transition, but it was time, and Oil of Olay was the face lotion I reached for.

My grandma, mom and now myself have all used their products, and I’ve been an avid user of Oil of Olay’s Complete lotion w/ SPF 15 for daily use now for over a decade, and it has served me well. It’s definitely done it’s work these past ten years. And, it’s working. I get SO many comments from people who think I’m younger. It’s really all about moisturizing, staying out of the sun and water, water, water (for consumption that is).

Then I discovered the best face scrub/exfoliator on the market, St. Ives Apricot Face Scrub. As a quad, exfoliating our skin is a must to keep it in tip-top shape, and this stuff is very reasonably priced. It removes all of the old skin cells from your face beautifully, revealing glowy skin you didn’t even know you even had.

What I love about St. Ives too, other than the fact that it’s cheap and it works amazingly well, is that it can be used anywhere on the body. As a quadriplegic prone to skin issues, exfoliating the skin can help immensely long term.

Rub it all over your body in the shower (in circles), clockwise and counterclockwise, and do this a couple of times a week. My skin stays in great shape and a nice bonus, I feel so much prettier whenever I do this. Amazing stuff.

My ultimate goal at some point however is to not care about aging and to embrace the now, but that’s not easy…even from where I sit. I just hope I continue to get carded for at least a few more years. After that, go ahead and bring on the “maams.” I’m ready.

Image courtesy of Tanel Teemusk

Cooking my favorites, and trying desperately not to make a mess

At 33, I’ve finally honed in on my cooking skills. I can’t move my fingers, but I can move my wrists. This is quite a personal feat for me. Cooking wasn’t something I thought I could do full-force, other than flipping grilled-cheese sandwiches and baking fries.

After my injury, going straight into college, I lived on my own version of the four food groups – coffee for breakfast, fried food from the on-campus grill for lunch, a mid-day snack of a Hot Pocket and Little Debbies for dessert. Yum-o.

And the one time I did try cooking in college – grilling a chicken breast in a skillet for Jason down the hall (he loved calling me “Tiff Tiff.” oh how I miss him) – I burned my hand where I couldn’t feel and got a horrid 3rd degree burn. Yeah…it took several years for me to want to try again after that.

Cooking however finally became something I tried again, 4 years after college, on Valentine’s Day. I was wanting to bake pink cupcakes for my boyfriend 100% on my own, but I was deathly afraid of one thing – getting them out of the oven. I had never baked before, but I knew getting a hot pan out wasn’t something I should try. I couldn’t grip the pan.

And then…the first big revelation (out of many more to follow) occurred: I realized was wrong. It was totally possible. All I needed to do was start thinking outside of the box. The solution turns out was right in front of my face: Pull the rack out, let them cool on said rack, and then slide the pan on your lap once it’s cooled. Simple, safe and totally obvious.

My brain finally broke out of the “I can’t do anything if I can’t do it normal” rut.

And I took this moment to start coming up with hundreds of other solutions in the kitchen. I now saw ideas everywhere I looked. Things are only hard in the kitchen, or anywhere else in life, as you make them. And my solutions have totally improved my life. Cooking, a lot like gardening, completely nurtures the soul. I love it infinity.

To open cans on my own, I wouldn’t be anywhere with my Automatic Can Opener. My mom bought one for me years ago and I refer to it as my “cutie pie robot.” Set it on an unopened can and watch it wake up and do its thing. Kinda cool.

I also wouldn’t be anywhere without a product I got last year from an inventor with paraplegia – My4Hands. This is a sturdy piece of plastic and fits perfectly on your lap, creating more “counterspace.” I have a super tiny kitchen and being in a wheelchair makes it even more cramped, so I fell in love with My4Hand. It’s great for setting hot things on too (thank you Dale Lehn!)

Another big thing I started to do to make cooking easier was to start buying pans and utensils I could use. I bought silverware with thicker plastic handles so I could hold them, I amassed a collection of pots and pans that had a plastic handle attached to each one. I wanted to be in control. Handles on pots is key to holding them without finger movement.

It takes a while to figure all of this out, but you figure out what you need as you go along. Trial and error is the name of the game.

The thing about cooking is that once you get good at it, you’ll want to do it more and more. Being able to create a beautiful dish without assistance helps me cope with my disability in an amazing way. From preparing healthy salads with my Slap Chop (to cut veggies quick) to baking a Jell-O cake for the 4th of July each year, I can *almost* do it all.

Maybe by the time I’m 40 I’ll be on Chopped (hrm doubtful, possible only if they come up with a “quadriplegic” 3 hour special).

What gadgets have made cooking possible for you?

Learn to love your entire body with yoga

How can you not love something that’s a part of you? When you’re disabled, the overriding idea is to eschew parts of your body that don’t work and focus on the parts that do, but that can be detrimental to your emotional and mental health. And this is exactly why I’ve grown to love yoga.

Yoga is much more than just Downwards Dog and one upping everyone in the room, it’s about restoring the mind-body connection. Yoga embraces the idea that our bodies and our minds are intertwined physically and metaphysically, and nothing not even a disability can erase this. A disability however does make it harder to tap into the mind body connection, and is exactly why adapted yoga is so needed.

I had no idea I needed yoga in my life until I went to my first class.  My friend who has cerebral palsy was telling me how great it was, and I was intrigued.  I had to wait 2 years to finally get into the adaptive yoga class taught by Matt Sanford, adaptive yoga pioneer and author of Waking (a great bio about his life), but upon attending my first class – a hot steamy afternoon in the summer of 2006 – I knew it was worth the wait.

My yoga teacher Matt is a paraplegic, and when you first go to one of his classes don’t think just because he’s also in a wheelchair he’s going to treat you extra special.  His classes will push you, and you’ll love him for it.  I had no idea what I was getting into when I rolled out his class the first time. On day one, I remember we focused on breathing and sitting. Two simple things, but not simple at all.

He told us to sit up straight, shoulders back, sternum up and balance on your sit-bones (yoga-speak for your butt bones) and don’t forget to breathe (through your nose). Oh man this was getting intense. Doing this all at once made my whole body feel alive again. I had complacently sat in my chair for too long. This awesome “conscious” sitting is what I learned in my first yoga class and I love it till this day.

But perhaps the biggest thing I’ve learned from yoga is how to love my entire body again.  When we become disabled or are born disabled, the medical world tells us to forget the parts of our bodies but that don’t work – break your back, make your upper body super strong – but yoga says no way. Every inch of you still matters, and this is why getting onto the mat is one of the greatest things about going to yoga as a wheelchair-user.

In a typical adaptive yoga class, there are volunteers who assist students who need help transferring onto the mat and getting into poses. I was so happy I didn’t have to worry about needing help when I found this out. The first time I was on the mat they lifted me down, sat me back-to-back with a volunteer so I could keep my balance, and another person helped put my legs into a pose. Before I knew it, my entire body was in a pose; my entire body.  And then I was hearing Matt tell everyone to push down through their feet, and I was like hold up, I can’t move my feet.

And then he said something profound I will never forget, “Do it even if you can’t.” To tell someone with paralysis to still try to move their leg and to tell them they can still impact said leg is huge. And he was right. I’ve found that there is still an energy that flows from the mind to the body despite paralysis.  When you’re in a pose and try to move your foot, it may not move, but something does happen. We see it in class every day.

So I will leave you with Matt’s beautiful words, “Do it even if you can’t.” This overriding idea, a tenet of adaptive yoga, has helped me love my body again and come to peace with my paralysis. Thank you yoga. Namaste.

Have you tried yoga? What do you get out of it?

How to choose a career when you have a disability

A lot of people with disabilities struggle when deciding which career to pursue. It’s not like any Joe Smith in a wheelchair can get a job splitting logs or mowing lawns. We don’t have the luxury of thoughtlessly falling into a job. But…maybe that’s a good thing.

Instead, we have to carefully calculate our abilities, scrutinizing what we can and can’t do (so someone else doesn’t do it for us). Before my injury, I had my heart set on becoming a professional dancer (i.e. my 14 year old fantasy to be in music videos on MTV).

After my injury and knowing that was no longer a possibility, I had no choice but to brainstorm like crazy. I needed to figure out something else that made me want to get up every day. Dance was my everything, but not anymore. What other area of life did I want to become a pro in?

Not being able to walk is limiting enough, and when your hands are paralyzed it’s even more tricky to find a job. My backup plan, to become a secretary, no longer possible. Filing papers, typing faster than 20 words a minute, stuffing envelopes and making coffee (oh man). So I took a cue from Stephen Hawking and started to nourish my brain.

Fortunately, the jobs we can do are opening up thanks to technology. We have it good. Back in the day, when World War II vets were some of the first people to live full productive lives after sustaining a spinal cord injury, a lot of them guys could no longer do what they did before, so they had to reinvent themselves.One of the most popular choices of these hardy men was to start a business, and start a business did they indeed.

From PCA agencies to mainstream businesses that have nothing to do with disability, these guys honed in on their business acumen and found happiness in their new paths.

But maybe business isn’t your thing. There are a ton of other fields you can get into.  Technology of course. Or you can do what I did and get a degree in Mass Communications, and work in the media (writing, blogging, reporting on air), otherwise psychology, an account degree, a teacher, customer service, computer science, foreign languages and math are fields people with disabilities have been known to try out.

The key is to find a career you love. No settling. Maybe you can’t be a dancer anymore, but you could run a dance studio. Or maybe you can’t be a construction worker anymore, but you could now elevate your career into architecture.  The best thing you can do is to is to look at your disability as the best opportunity ever to make yourself smart as a whip.

You can find a career you love, it just may end up a bit more white-collar.

What do you do? How did you choose your career?

Photo courtesy of looking glass

Why I couldn’t live alone (and happily) without Craigslist

6853270358_c89271d21d_mThe first time a PCA stole from me didn’t occur in my home strangely enough, but when I went back to the hospital for more physical rehabilitation a few years after my injury. And I knew exactly who it was too – the tall pretty blond who got me up and had a taste for the finer things in life.

It happened when my dad took me out shopping for the day and brought me back to the facility. The next morning after getting up, I noticed a few pieces of my new Clinique makeup and my new sports bra from Victoria Secret were missing.  My heart was in my stomach. This was when I started to realize you can’t blindly trust just anyone who takes care of you. They have to prove their trust.

So I went back home, the years passed, and I had many different PCA’s.  Then I was stolen again from in college when my PCA at the time took my ATM card out of my wallet while I was in the shower, and went down and took $325 out of the ATM machine (in my building’s lobby) to help pay for her boyfriend’s crack habit.

Awful, sticky business…PCA’s.  She was fired of course by me, but listen to this – not by my agency. There was no way to prove that it wasn’t an authorized withdrawal (heresay), so she remained working for them for God knows how long.  It’s sad when your agency doesn’t believe you.

This is why in 2005 I finally took on the reins of being my own PCA staffer (and staffer extraordinaire am I ever). That’s right, I now do all of the major parts of staffing by myself.  When I am in need of a new PCA, I post ad as on Craigslist, schedule a time to interview them, then if I like them, I send their information to my agency and they do the necessary paperwork.

I know not everybody can do this on their health insurance. It’s not allowed or some craziness like that. Here in Minnesota where, I’m on what’s called the PCA choice Program, where you find your own PCAs (taking your agency out of the picture mostly), allowing you to pay them more per hour.

My responsibilities include posting the ad, doing the interviewing, hiring and firing and the hardest, last minute staffing. It’s a lot more work, but being in control of who comes into my house instead of just letting ‘in,’ is something that cannot be replaced.  I know most folks have an agency that does the staffing for them, but Craigslist is a surprisingly great tool to find PCA’s on your own.

Posting a job ad on Craigslist is easy. Create an account, login, go to the “Jobs” section then click on “Post New Ad.” To post a job in the “Healthcare” section, it now costs $25.00, but you can still post an ad for free on Craigslist if you post in the “Gigs” area (in the “Domestic” section; the most appropriate area for a PCA ad to be).  Craigslist without question has been an irreplaceable tool.

There are other caregiver staffing websites, but they’re usually really expensiveand not as highly trafficked (why would you want to pay for that?).  It may seem kind of weird, but Craigslist is the reason why I’m able to live independently happily now (this was not the case when I was 25).  Now that I’m older and wiser and know how to find good people the smart way, my happiness level has skyrocketed.

Thank you Craigslist, for being the awesome website that you are.  Everybody uses you, making it amazingly powerful. Just remember people – always interview wisely and run a background check on anyone before you bring them officially into your home.  There’s nothing worse than petty thefts, especially when you get between a girl and her makeup.

Do you use Craigslist to find PCA’s?  Or do you think it’s a really bad idea?  How do you find your caregivers?

Links:

– Craigslist Healthcare Jobs 

Photo courtesy of Eli Duke

Real-life new wheelchair shopping lessons

Every wheelchair-user fears the same thing: Transitioning to a new wheelchair. I’ve had four new power wheelchairs over my 20 years of being paralyzed, and each transition has been progressively more difficult (oh how I wish it was as fun as shopping for a new sports car). Yup, getting a new wheelchair it’s about as fun as going to dentist.

However, if you’re like me, you’ve been using a wheelchair for awhile and know what works for you. So good news! You’re in for a less rough of a time than most.  But be warned, ordering a new wheelchair is so not like buying new clothes. You just can’t return it if it doesn’t fit, or decide you don’t like it. It’s a massively expensive purchase and there’s a lot of risk involved. What’s a wheelchair-user to do?

One of the best solutions to this quandary – finding a brand you like and sticking with it. My first wheelchair was a rental – an E&J clunker from the 1980’s (oh man that was an awful wheelchair).  Needless to say, for my first chair I decided to go shy away from that brand and went with an Invacare powerchair instead. A teal non-whiny powerchair. A cutie patootie.

Here’s the thing – a wheelchair just isn’t a mode of transportation, it reflects who you are (even if you don’t like it).  This makes getting the right wheelchair key. Trust me, the right chair can definitely have an impact on your outlook on life: Get the wrong chair, you’re as crabby as Mr. Potter from It’s a Wonderful Life. Get the right chair, and conquer the world like Sen. Langvin (a quadriplegic representative from Rhode Island. He has an iBot).

This is why shopping smartly is massively important when shopping for a wheelchair, but this is not always easy when there’s monetary restrictions. Some of the most amazing chairs that could completely transform people’s lives – 4x wheel drive wheelchairs, wheelchairs that stand up on their back two wheels, wheelchairs that climb stairs – can’t happen for a lot of people. This is why shopping for your main basic chair, which is probably not your first choice, but you’ll take it anyways, is a pretty big decision.

What should you look for? I ended up liking the Action powerchair line from Invacare because it looked as modern as a powerchair could. It wasn’t really loud and it came in some pretty cool colors (that’s my 14 year old mentality there), and I’ve consistently gotten my chair from them over the years though, only a newer model. They just feel good. I’ve looked at other brands – Quickie, Permobile, but they were either too loud/not as streamlined, too big and wouldn’t fit in my van, or they were were too darn expensive and not covered by my insurance. I had to settle, but it was a happy settling at least.

The newest model I got from Invacare is their TDX SP, with elevator seat (and in ‘wet black’ so it matches all of my clothes). It also came with tilt, but (funny story) I had to remove it so I wasn’t sitting so high from the ground.  After getting it, I found I couldn’t reach things when I dropped them. It was a bummer, but it had to be done (and my tilt now sits in my closet in a big cardboard box).

But boy do oh I love my elevator seat. It raises my seat 2 1/2 feet taller than it usually is, giving me a much better view at concerts or when talking to people. The first time I got it was my most previous wheelchair (in 2005) and holy cow was that a happy year. I was getting stuff out of the cupboards left and right like it was going out of style (just because I could). I’ll never go back.

Remember, at the end of the day the final decision on the chair you’re going to get should be yours. Rehab specialists and PT’s may think they know what will work best for you, but always go with your gut. I’ve learned that’s one of the best ways to guarantee you end up with a wheelchair you love.

What wheelchair have you found works best for you? Are you a brand person and stick with the same company, or have you tried different chairs from different companies over the years? 

Links

– Invacare’s TDX SP powerchair

– iBot standing wheelchair

My minivan, my unlimited life

Some people eat ice cream or watch Superbad to get happy, I on the other hand have found a much more visceral dorm of happiness – I drive my minivan.

When I finally got my driver’s license at age 25 (a very daunting task for a C5-6  quadriplegic mind you; tons of extra gadgets to get the hang of), my eyes were opened to the therapeutic benefits of getting where you want to, WHEN you want to. No limitations. The same as everybody else (something you rarely get when you use a wheelchair). Every time I get behind the wheel my disability visage transforms into just another car on the road. I love it.

And although yes, it is a modicum of independence, the adapted minivan (the minivan combined with the lowered floor and ramp) is no small purchase. With a base price (new) of $35,000 (and that’s on the low end ) lots of folks just don’t have this kind of money. Buying a used beater, the birthright for most first drivers, isn’t an option for us.

This is especially not cool since so often people with disabilities can have a harder time getting employed. Workplace discrimination is a sad but true reality. So…we struggle make enough money AND our vehicles cost more. Great. I had a hard time figuring out funds myself. Thanks to help from my family, I ended up purchasing a used 2006 Dodge Grand Caravan (1 year old) from a rental car company for $12,000. We figured that was a wise move.

And I was fortunate to have my health insurance cover the installation of the Braun lowered floor/ramp; a huge expense I was worried about (it costs much more than the van itself). I was hugely lucky. But, not everyone is this lucky. I know hundreds people with disabilities both in person and online who desperately need a van. They want to get one, but don’t have the funding. Many of these folks search and search until they find a used one they can afford (but not often though).

Others throw a benefit for themselves to raise the money. This can sometimes work, other times not so much. And others just give up. I really hope adapted vehicles came down in price one day. At least we have newly adapted vehicles like the MV-1, the first adapted vehicle to be made on an assembly-line from VPG, which has greatly lowered the base price.

And I drive from my wheelchair. Yeah, I stay in it. And boy is it sweet. This by far is my most favorite adaptation in my van, and it’s made possible by my EZ Lock automatic chair tie-down system; a slick contraption that keeps my wheelchair in place as I drive. I just drive my chair over it and hear for the “click” (to know when I’m locked in). Such a great independence-enabled thing. Automatic tie-downs truly are the only way to go.

As I do get locked in and turn on my van, feeling it purr…a flurry of endorphins 9 times out of 10 inundates me. This feeling cannot be topped by anything else in my life. Shopping, traveling, my boyfriend even, nothing.

And when I bring my minivan up to speed on the freeway, nothing can beat that stronger and stronger feeling. My unresponsive body is no longer a factor at that moment. Not behind the wheel. The car responds to me and that is all I need. And OMG oh what a feeling.

Thank you, my sweet Silver Bullet, my Dodge Grand Caravan, for bringing me the feeling of limitless joy.

What do you drive? And what kind of adaptations do you use?

Links

– Dodge Grand Caravan

– Braun Entervan

– EZ Lock tie-down system

– The MV-1 from the Vehicle Production Group

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