Things I've discovered about living life in a wheelchair:
When I was diagnosed with Charcot in both of my feet my doctor advised my family I move into a nursing home. I'm 31 years old. I was devastated. Due to our home not being wheelchair accessible he believed there was no other option. Well, I'm not one to accept defeat easily. I'm proud to say with the moral support of my parents and a pair of $29.99 gardening knee pads, I have managed to stay out of the nursing home! I’m developing abs and buns of steel because of the new ways I get around. Crawling on all fours around the house and crab walking down stairs has its health benefits! Plus, I get to hang with my favorite furry friends 🐶🐶
Sitting in the shower is bliss. Buy a comfortable shower stool. We aren’t horses. We’re not intended to stand and relax at the same time.
My closet has never been this organized (although I've always been a little (or a lot) OCD about my hangers matching and everything being color coordinated). Clear your clutter! Oprah would be proud.
You’re going to save a fortune on shoes. Go ahead and have yourself a shoe funeral. It helps to have closure 👡 👠 🖤🖤
I get to wear yoga pants, knee pads, and Velcro gloves EVERY day. I feel like Lara Croft’s bad ass first cousin.
I don’t have to suffer through wearing heels and pretend my feet were born looking like Barbie’s.
Hiking, which I consider the least enjoyable activity on the planet, is out of the question. Just like camping, which I consider pretending to be homeless. (unless there are marshmallows, hot dogs, a campfire, and a mattress in a heated cabin - then take me to the woods!)
You will develop the hottest triceps of your life. (no expensive personal trainer necessary)
You are classier than first class when it comes to boarding airplanes. First one on board privileges! Also, you get the red carpet treatment when going through security checkpoints. No more naked X-rays 🙆🏼
Handicap parking! Need I say more?
Join a support group online, in person, or better yet, both! You will meet all sorts of people with stories that will floor you.
Jam out to Sarah McLachlan with your dad while driving to your doctor appointments.
Realize you have no control over your situation, but the capacity to develop a ton of self control.
Make a pro's (no cons) list of everything that brings you joy. Life may be challenging you to the point where the only thing that comes to mind is having iodized salt preventing you from developing goiters (pictured below - this is a legit thing still happening around the world). You'll find once you write down one thing it will become easier to think of more.
"Let it go, Let it gooooo!" as Elsa from the movie Frozen would sing. Don't hold onto all of the hardships you've endured or the hurtful things people have said. I tend to always feel like I'm being criticized if anyone tries to give me advice. I feel like I'm not doing something right or I've become a disappointment. I once had a theater director tell me, "You're acting is like an epileptic cartoon character." and that was ten years ago... I've got to, "Let it go, Ali. Let is gooooo!"
Not everybody is going to take kindly to your circumstance. But it helps if you take kindly towards them. No point in getting riled up over somebody you'll most likely never see again. More importantly, be kind to YOURSELF. In the beginning, I felt responsible for my complications. I blamed myself for what was happening to me. This is not your fault! Whatever you did in the past is in the past. You can't change the past, but you change your perspective. All we can do is try our hardest right here, right now.
Step up your purse game. You're going to want to carry something practical and efficient. I love my Baggallini!
Pamper yourself. Life can get really dirty, which requires a lot of scrubbing. The harder you scrub, the shinier you'll become!
Find something to be thankful for in everybody. Let your loved ones know how much they are appreciated. And if someone is irking you, find something, anything, to be thankful for. (even if it's their brassiness teaching you patience)
Always pee before you leave the house. I mean, really pee. Pull an Austin Powers. Count 20 seconds after you think you're done peeing. I've found that most places have handicap stalls, but not necessarily handicap access to get IN the bathroom, smh.
Don't be afraid to ask for help when you need it.
Get some good weightlifting gloves for when you go whirling in your wheelchair. I love my Contraband Pink Labels (I have them in multiple colors)
Everything is going to take a LOT more time than it used to. Be patient with yourself and the objects you may want to chuck at the wall while relearning everything from bathing to beaching.
Listen to music. It will be your constant companion in your loneliest of moments.
Make yourself sparkle on the outside. You're already sparkling on the inside! ⭐️ 🌟 ✨
Don't procrastinate. The changes that impact your life the longest happen in the shortest of seconds. Do what needs to be done today.
Hold hands with people. Hold a stranger’s hand by introducing yourself with a handshake. Hold the hand of a loved one opening up to you about their pain. Hold hands even when it may feel awkward. Hold on tight, because you never know where people may lead you.
Become an aquaholic. Soak your sweet self in the sea (or tub, pool, Jacuzzi, wherever you can if you're landlocked). Drink lots of water!
Don't stop living your life. You can still do ANYTHING you put your mind to. If you love going to the dance club, go to the dance club! Are you a food connoisseur? Get yourself to that restaurant opening your dying to attend. I'm a lover of the sea, that's where you'll find me!
Don’t be afraid to make a stink. People leaving ladders and carts in the store aisles making you feel like Pac-Man? A dude parks in the only handicap spot and then loses his keys? Can't reach your favorite treats at the grocery store? Say something. Make yourself heard. We’re no longer within earshot so raise your voice!
If you’re in a rainy place buy a poncho. You’re going to find it very difficult to grow a third arm to hold an umbrella.
Paint your toenails. Your toes may not touch the ground much these days, but that makes them that much closer for you to stare at. Dr. Remedy nail polish improves your toenails AND is easy to apply and remove.
For all you perfectionists out there, you're not going to get it right the first time. Nor will you get it right the second, third, fourth, fifth... you get my point.
Dance and stretch it out first thing when you wake up no matter how crappy you may feel. It gets your blood and lymph flowing, as well as your day. I wake up, flip on my music, and dance prostrate (kind of like an epileptic cartoon character) for at least three or four good songs while lip syncing along. Check out the Get Inspired section to find some tunes to gyrate to.
It's all about your perspective.
Make your bed every morning. Make it beautiful. Your dreams will be much better sleeping on a satin pillow. (aww, I love Sasha Bear to the moon and back)
Check out the app Taskrabbit. If no one is around to help you, book a handy-man within seconds to perform small tasks around the house. They'll do anything: furniture assembly, moving boxes, pretty much all your basic household maintenance needs. The best part is the cost is nominal!
Enjoy the ride, literally and figuratively. There are things you will discover from this angle that will broaden your perspective like you never imagined. (the day I got my chair in the hospital)
Grow a garden. It’s always easier to nurture yourself when you nurture other things. It helps you keep your face towards the sunshine! (this is my personal fern gully (sans the awesome sign, sadly))
Find a pen pal. Facebook is great but receiving snail mail feels like Christmas has come early.
Read every morning. A fun fantasy novel, something inspiring, or even People magazine if that’s what floats your boat. I’m currently reading How To Love by, Thich Nhất Hạnh and Throne of Glass by, Sarah J. Mass)
Pick flowers for yourself. Don't wait on anyone to give you the things that make you smile. Color your life beautiful! (those are the brightest pants I own)
Always be dancing. People are going to stare at you in your chair anyway so might as well make it entertaining.
Understanding is another word for love. So see the world lovingly! Listen and learn about other people's stories. They will help you to fall in love with your own. (that's my insulin pump crammed in my top)
Invest in a back massager (which doubles as a butt massager). It’s a lifesaver for those achy muscles after sitting all day. I use the Nektech Shiatsu Deep Kneading massage pillow. Divine.
Get dressed every day no matter if you’re leaving the house or not. It will help keep you feeling like a part of your community.
You're going to have so many different feelings about your new situation. Let others also react in their own way to your circumstances. Everyone is allowed to breakdown messily sometimes. Of course you will have a zillion reactions ranging from hurt to even momentary hate. When I feel a surge coming on I inwardly repeat the mantra, "Let it be rain on my umbrella. Let it be rain on my umbrella." It helps calm me down.
Adopt a princessly (or princely) puppy. Caring for a soul so sweet will bring you joy. Say, "Hello" to Sasha Bear and Sophie! (yes Sophie is wearing one of my cosplay wigs 😊)
Get on social media. Even if you never chime in it’s comforting to know their are others struggling alongside you, no matter the distance between.
Develop a daily routine. It will help get you going on the harder days as well as help the people caring for you. Rhythm makes you feel more at ease. At the end of the day I have a list of all of the little things I need help with (mailing letters, taking dirty dishes to the kitchen, or even just helping reach my paint brushes in the closet). It’s helped both my family and me feel more empowered.
Thank your feet (or foot for my amputee friends) every night by giving them a little rub down. This is a great time to check for wounds and any more breaks as well. I’ll even say, “Thank you” out loud so they are sure to know they are loved and still cherished.
Kiss car payments, the stress of traffic, and paying at the pump goodbye (it's California state law that if you're disabled and still able to drive, the gas station attendant is required to pump your gas for you for no extra cost)! You are now a Hollywood starlet being chauffeured wherever and whenever you need. (give ACCESS 24 hours to pick you up)
Our olfactory sense is the strongest of all senses. Light a candle to warm your spirits and fill your nostrils. My favorite smells at the moment are: Scentsy Welcome Home spray, Nag Champa wax melts, and Rosy Rings' honey tobacco candles. Essential oils are the bomb too. (Ashleigh is the master when it comes to knowing what will work just right for you!)
Drink your tea out of a mug that makes you smile.
I used to hate hospitals. Over the last few years, after spending a big chunk of my time admitted to them, I've learned to appreciate my overnight stays. Doctors and nurses will be much more responsive if you treat them kindly. They are only human too. Amuse yourself by finding wonder in the magic of medicine, and how you ride to the bathroom in a really cool colored contraption. (Also, Snapchat is a savior for sharing your predicament but not how you haven't showered in a week)
Nickname your wheelchair. I call mine my “whirler” 🎇💫✨
Surround yourself with a court of people who treat you like royalty. Be loyal to them because they are dedicating themselves to you. And don't forget to treat YOURSELF royally. Remember, your fairy tale is only just beginning!
Be brave enough to say goodbye to those who live their lives cynically. You don't want to become a bird with those kinds of feathers.
As much as it may feel like it, this isn't all about you. Don't be that A-hole.
There are always exceptions to the above statement. Feel free to be an A-hole when fighting for a spot on elevators. People tend to try and beat you to the punch to nab a spot. So throw a punch or two if you have to!
If you're a lover of the theater, or anything artsy (which I am), you will always get the greatest seats in the house (orchestra section, YES!!)
Get out in the sunshine, even if it's just for 15 minutes a day. Get yo-self some vitamin D! Spread your own sun rays wherever you go. The dark of night is always greeted by the light of day. Your mornings may be rainy, your weather forecast looking gloomy, but you have the light within to clear your stormy skies. Let sunny beams warm you through and your heart will bloom beautifully. A bountiful harvest of love will flourish for you to reap. The hardest of seeds blossoms into the most dazzling of daisies. Shine on, you brilliant soul you ☀️☀️☀️