All posts by Tiffiny Carlson

Tiffiny Carlson is a writer and quadriplegic from Minneapolis. She has a C6 spinal cord injury from a diving accident when she was 14 years old. Writing and breaking stereotypes is her passion. She's been the SCI Life columnist for New Mobility magazine since 2003 and is the founder of the longtime disability site, BeautyAbility.com. Her work has also been featured in Penthouse, Playgirl and Nerve.com. And when she's not writing, Tiffiny loves to cook and practice adaptive yoga.

Quadriplegic Wins Modeling Competition

Take a stroll down the makeup aisle. Chances are not one of those women in any of the ads plastering the aisle have any kind of disability. But now a 21 year old woman from Coquitlam, B.C., Canada, is changing all of that. Jessica Kruger, a C7 quadriplegic (injured in a fall from a ladder when she was 15), has won an online modeling contest put on my Lise Watier, a very cool Canadian makeup company. Read more about her win

I always though women with disabilities wanting to get into modeling should target makeup modeling opportunities. In most photos for makeup, all you see is the model from the chest up, so our inability to walk wouldn’t ruin the shot in anyway. It really is a perfect way for us to still model. And if you have a particularly stunning face, such as in Jessica Kruger’s case, this is where you should start first.

How She Won

And the online contest was set up by Lise to find the face of their new “Something Sweet” perfume, and over 400 wanna-be models entered. What’s cool is that Jessica got in the top 5 by user votes only. The top 5 then went to the Lise Watier HQ to get interviewed by their execs, with Jessica coming out as the winner. “I’m in shock,” Jessica said about winning, who entered just for fun not thinking she’d ever have a chance.

And that’s what gets me really. She didn’t expect to win. No one expects the masses to see our beauty. I know this from first-hand experience myself. And when you’re surprised and humanity does see your beauty to the point of giving you a modeling contract, it’s pretty hard to hold onto any lingering sadness at that point. I can only imagine how good that cloud feels where Jessica is hanging out right now.

Lise Watier plans on creating a series of ads featuring Jessica, including magazine ads, online videos and product ads at Shoppers Drug Mart, where the perfume will be available. I think what I love most about this story other than the fact that the world is finally seeing a model with paralysis in mainstream beauty ads, is that Jessica is an athlete – the youngest female quad rugby player in all of Canada actually. A well-rounded girly girl who ALSO has a disability – gotta love that.

Will We See Application Tips from Jessica?

I hope in some of the videos where they show Jessica sporting her makeup, looking gorgeous, they also show her putting on her makeup herself. With partially paralyzed hands, which she has, putting on makeup takes some serious skill. I’m in the same boat she is and have found a few makeup products that work great for my hands.

One of my “must-haves” is my CoverGirl Perfect Point Eyeliner in Black Onyx. There’s something in this eyeliner that makes it glide on like a dream, don’t know what it is (wax?), but it still shows up quite nice even if you can’t press it hard. I also would be 100% lost with my long-handle makeup brushes. The extra-long handles are perfect for wedging between paralyzed fingers.

I also would cry like a baby if they ever discontinued Neutrogena’s Healthy Skin Bronzer in Sunkissed; best shade ever. This color is so forgiving when it comes to uneven application, which can happen, because it’s comprised of several color palettes combined into out, helping to blur over any imperfections.

I really hope Jessica’s win and subsequent ads truly change misconceptions people have about people with disabilities. A pretty face has a lot of power, and people will take note.

Watch a video interviewing Jessica about the competition

Do you wear makeup everyday? What tricks help you out each morning?

Check out the products recommended in the post

– CoverGirl Perfect Point Plus Eyeliner

– Neutrogena Healthy Skin Bronzer in Sunkissed

– Long handle makeup brushes from MAC

Dodging Pressure Sore Close Calls

They say when we’re asleep our skin works overtime, healing all those nicks we’ve accumulated. Skin can heal so much better when it’s given a chance, but that’s kind of hard to do when you’re constantly sitting. No wonder people in wheelchairs constantly have skin problems.

The fear of getting a bed sore has been one of my number one concerns since sustaining a spinal cord injury and so far I’ve managed to prevent a full blown bed sore that’s required best rest or surgery. And at 20 years post-injury, that’s quite the feat. When I look back, I’m actually surprised I managed to pull it off. It was definitely a combination of being over the top vigilant along with finding a few magical products.

Here is how I’ve been able to keep my skin in the best shape possible as a quadriplegic for 20 years straight.

Inflatable toilet seat: When you’re dealing with a lack of sensation AND lowered blood flow, all of this spells bad news for the skin. One of the worst/most common places someone in a wheelchair will get a sore too is on their butt. The one time I had a minor scare in this area was near my tail bone; that bony protrusion that is the bane of so many wheelchair-users existence.

I had gotten a new wheelchair, my knees were raised too high I didn’t notice, and after having my new chair for only a month, I develop the very early stage of a sore on my tail bone, BUT I nipped it in the butt literally by using an inflatable toilet seat in bed each night, healing it in a month.

My doctors had really wanted me to turn every few hours, but I lived alone, which meant doing so would have been impossible. I instead found this inflatable plastic toilet seat online, placed the center of it underneath me where my tailbone issue was so no pressure was on it as I was lying down, and within a month I had healed that area.  While some doctors don’t necessarily recommend this, but since I’m lightweight, it worked pretty ok.

Purchase an inflatable toilet seat

Custom seating: After that skin scare, I decided to change the style of seating I was using. Instead of using the traditional Roho as my wheelchair sea, I had my butt pressure mapped to have a custom seat and back made for me by a local custom wheelchair seating clinic, Gillette. While there’s literally a hole underneath my butt where I’m sitting in my wheelchair now, this seating has been one of the best things I’ve ever for my long-term health as a quadriplegic.

Check out seating clinics near you

Cabot POL cream: Another issue that people with spinal cord injuries can frequently run into is a skin condition called cellulitus. This condition makes the skin swell and turn red from minor skin bacteria that can get under the top layer of flesh (small scratches on the skin is all it takes).  If you rub your armor legs on anything from a armrest to a brace often, you increase your chances for this condition, and I have gotten it quite often.

To prevent it, I was referred to this new unheard of arm lotion from someone online. She told me to purchase Cabot POL cream, a body cream with lipids that prevents cellulitus from happening in the first place. What you do is put in on all over your body right after a shower, and the lipids and work to create a barrier on the skin.

Purchase Cabot POL Cream

Extreme vigilance: And another thing I’ve learned is that you can never be too careful with your skin. If say, your toe is looking like it needs to heal, don’t risk it and instead, do what I do and wear sandals that day.  When you have compromised skin, something seemingly small can turn into a really bad sore in a matter of 12 to 24 hours. While some people may think you’re being over the top when it comes to small scratches, they don’t know what it’s like to have to wait months on end for the skin to heal.

Taking care of your skin is without question a second job when you’re paralyzed, and it’s a job you can’t quit. I plan on going 20 more years bed sore-free.

How do you prevent pressure sores?  Any secrets?

At UNlimiters, we’re always looking for products that help us live more independent and easier lives. Have you found a product that has improved your life? Let us know in the Shout section of our store and we’ll try to add it to our selection.

You Can’t Get AC Everywhere: How I Stay Cool

Staying cool is crazy hard when you can’t sweat. Not being able to sweat of course is a side-effect of living with paralysis. One of the worst, actually, but this entry isn’t a pity party entry. Not today, my friends. This entry is all about finding solutions. The solution-finder. That should be my middle name.

I don’t care where you’re at – in your van, car, stuck in bed with a broke AC unit,maybe you’re outside at a music festival and shade is no where to be found. Here are my favorite ways to stay cool.

Sun shade

Southern belles had the right idea when they, and the ladies before them for centuries on back, used a sun umbrella to keep their fair skin as white as snow. That gave me an idea after visiting the local Renaissance fair, and my sun shade has been my last ditch go-to cooling method when finding shade is otherwise impossible. And gosh do they work quite well.

– Sun Parasols

Of course snagging one is a light color is a good idea. Mine is red and works good, but white would be much better. As for holding the darn thing while driving; that isn’t always easy. If you have a hard time holding a sun shade as you drive or push your chair, here’s a cool wheelchair umbrella-holder to consider

– Paraplis Umbrella Holder for Wheelchairs

Battery-powered fan w/ mister

Manually fanning yourself is so pre-Edison. Embrace electricity in the shape of a battery-power personal misting fan. I can’t fan myself too long without getting a tired arm and last year after the AC in my van broke, I turned to one of these as a way to keep myself cool upon arrival to my destination (setting it up to spray/mist me as I drive is still something I’d still love to figure out).

This product is one of the most fabulous cooling devices to be invented in recent years. As you know, sweat helps the body cool by coming into contact with air, and this mister pretty much does exactly that. Of course the batteries need to get replaced frequently if you use it a lot, but the thing works good. Every person out there with sweating issues should get one of these in their first-aid kit, stat.

– O2 Cool

Neutrogena Fresh Cooling Sunscreen Body Mist

I first came upon this magical stuff a couple years ago when I was in Denver, CO on a road trip. I was all blistery red from the extreme sun exposure which is common in high-elevation cities (learned the hard way!) and my sunscreen had run out. So I was in Target for a pit-stop, and I found Neutrogena Fresh Cooling Sunscreen Body Mist SPF 70.

The “cooling mist” intrigued me and boy was I pleasantly surprised. This stuff cooled my skin the second I sprayed it on, and it lingers. It really is a great thing to have if you’ve been burned and need a quick way to cool off.

– Neutrogena Fresh Cooling Sunscreen Body Mist SPF70

Gatorade

I know some people may think Gatorade is reserved for the athletes and the wanna-be Michael Jordan’s of the world, but there is healing power in them there electrolytes, and you can only get them in liquid form with Gatorade, well easily at least. Electrolytes are what your body needs if it’s overheating and needs to rehydrate asap, which btw is kinda essential to staying cool.

There are a million Gatorade flavors out there, but beware – not all of them are great; not by a long shot. But my favorites are Ice Blue, Grape and Strawberry. When summer hits, I make sure to keep a thing of Gatorade both in my fridge and in my van at all times. You just can’t be too safe. Messing around with possible heat strokes is no joke.

– Gatorade

The intense hot days look like they’re here to stay, which means your “stay cool” arsenal is just as important as your zombie and end-of-the-world arsenals. Be safe this summer, kids. I had a few close calls last summer and it was so scary stuff. Oh and remember when in a pinch, a cup of cold water over the head does the trick too.

How do you stay cool?

Photo courtesy of G. Briem

My Neverending Quest of Trying to Like Water

Raise your hand if this ever happens to you – you look at the watch and it’s been several hours, yet you’re uncannily not thirsty. Strange, right? This has been my reality my entire life. I was born a very un-thirsty person. So of course, after becoming someone with a spinal cord injury and a regular catheter-user, not liking water was the worst things I could possibly have a preference about.

My physiatrists, urologists and regular medical doctors have all pounded it into me too – you need to drink water constantly if you want any chance of living a comfortable life. Been dogged down with chronic UTI’s is no way to live, and unfortunately, this has been my reality the last 20 years. I’ve tried desperately to make palette fall in love with water, but still no love arrow has struck.

My first experiment was to try to drink cranberry juice as a replacement for water.  I can actually stand that more than water itself. But of course I quickly found out that cranberry juice does not make a good bladder “flusher” so-to-speak. So I moved onto my next theory, which came about in college. I found out that drinking warm to even hot water, plain, made it go down easier.

Yup, hot water. I know that sounds extremely gross to a lot ofpeople, but to me it’s one of the most delicious things ever. Simple, hot reverse-osmosis water (which I get in refill jugs from the grocery store), heated up. And I’m not the only one who prefers drinking hot water either. In parts of Asia, notably Vietnam, it’s common for elderly people to drink warm water on a regular basis. Maybe I was Asian in the past life?

And later on in college I discovered another way to make hot water go down even better – Canarino, hot lemon bags from Italy, which I ordered online. Each bag is stuffed with dried lemon rinds that put into hot water to give it brighter flavor. I’ve always been a fan of lemons and limes in cold water on a hot day, but on average days, hot water with a lemon bag can’t be beat.

And after college I went through a rather long phase of trying to make water even more interesting by using Crystal Light packets. The hot water with lemon can only entertain you 24/7 for so long. A little variation is key. However…I quickly became addicted to the fruit punch flavor, and drank it on a constant basis for at least a 3 to 4 years.

Little did I know it was full of horrible chemicals that made my bladder situation even worse. Remember this folks – Crystal Lights is full of chemicals and other questionable ingredients. Always try to go natural, and this is not the way to do it. I quit drinking Crystal Light a few years ago, and I noticed a huge difference right away.

And since quitting Crystal Light cold turkey, I’ve been back on the plain old hot water band wagon adding nothing but good vibes to each cup when I heat it up in the microwave (a solid 1:30 minutes each time = perfection). And my go-to cup that makes my whole life easier, letting me fill it up on my own without any issues is my MiGo plastic cup, a great cup I scored at Target several years ago.

The cup comes with an easy-to-remove plastic top, which helps keep my water warm for much longer time. The cup is great, but when I’m on the go I run into hydration issues (I’m still waiting on the built-in microwave for powerchairs). Drinking cold water is no quite difficult.

As it stands, I’ve become resistant to about half of the antibiotics prescribed for chronic UTI situations, and I’m not getting any younger. Drinking enough water more than ever is critical to my long-term survival. I’ve now become old enough to realize it doesn’t need taste good. I need to just do it. I’ll never love water, and I’m ok with that. Being around here long enough is what really matters.

What tricks do you have to meet your daily water quota?

Photo courtesy of Pixabay

Goodbye Bikini, Hello One Piece

After I became a quadriplegic, the one thing that feared me the most was becoming ugly. Fat, unattractive, out of style…I was worried that somehow my wheelchair would magically make me a troll.

I know, I know shallow vanity at its finest, but I was 14 and this line of thought was inevitable. After a couple rough years, I finally found a style groove, realized it was possible to still work it sitting down, which boosted my confidence. And by the time I was 19 I had amassed a collection of swimsuits.

See, when you live in a state where you suffer 9 months of cold for three brilliant months of summer, it’s easy to go overboard when you finally get the chance to buy summertime stuff. It’s just so darn fun. It’s like being 8 years old again and your dad just gave you a $10 bill to blow in the candy aisle.

Ever winter I would dream of all the aquatic scenarios emy swimsuits would get into- laying in the sun on my balcony, out at my mom’s patch of beach on a lake they live by, on the pontoon trying to hold on for dear life, even in the hot tub in my building. I couldn’t walk anymore, but these swimsuits gave me a sense of reclaiming of my AB life. I was still holding that torch of my personality tall and high.

But now, as I’ve gotten older, I’m beginning to look at my swimsuit collection a little differently. I have about 15 bikinis, 2 monokinis and 2 one-pieces, and most of those bikinis haven’t been worn in years. Are my 30+ years finally changing me clothing preferences?? Hrm. I thought I was immune to that.

After putting on bikinis in the past years, my body is starting to bug me. I see bones here and there, a quad guts that’s not bad, but bugs me nonetheless. I want perfection, but I know it’s not possible, so now I’ve decided to amp up my collection of one-piece swimsuits; the retro look that is making a comeback. And the good news – they’re not for older ladies anymore. One-pieces are super sexy now days.

Finally, a clothing trend works in my favor. The last time that happened was the long tank top trend and before that, tear-away athletic pants. Oh my PCA’s loved those. So now I’m having fun shopping around for one-pieces. Victoria’s Secret has a few great options, such as this RuchedHalter One-Piece. Still sexy in the important places, but a bit more coverage. I would even wear a pareo or flowy skirt with this too since I absolutely hate my thighs.

Otherwise, you can even buy a one-piece now that has a mini-short built into it, like this Romy Romper from Victoria’s Secret as well. And avoid strapless if you have a hard time pulling your tops back up.

And remember to always put on your sunscreen when going out in the sun this summer. The sun is getting stronger each year, and skin cancer is growing sadly. We all want to look cute, and skin cancer is so not cute. One of my favorite styles of sunscreen is the aerosol style, which is SUPER easy to put on if you have limited hand movement. My favorite is Neutrogena CoolingSpray with Sunblock. A great way to cool off if you have problems in that area too.

Where do you shop for swimsuits? What style do you think works best in a seated position?

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

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