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 🐶🐶
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!)
Join a support group online, in person, or better yet, both! You will meet all sorts of people with stories that will floor you.
"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.
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.
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!
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.
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!
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)
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.
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.
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)
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)
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 ☀️☀️☀️