America’s political disparity seems to be at an all time high right now. I’d say this happens after every four-year election cycle, except this time it feels different. People have been spiteful and unkind to each other, more than ever before. Trump supporters are celebrating having won the Senate, House and Presidency trifecta, happily high-fiving and giving both coasts the middle finger, while Clinton supporters are weeping and simultaneously marching through the streets prepared to set the world afire. In full disclosure, I relate to the latter. I was with her. I still am with her. But that’s not what this post is about. I’m self aware enough to know that simply sharing the agony I felt after Hillary’s loss will not create the change I want to see. So instead of documenting my tears, I want to share my unique position as a white privileged person, who is also a disabled minority, living in our deeply diverse but underrepresented country, with hopes to awaken compassion and understanding for why all of us could benefit from using our privilege.
I broke my neck doing a trampoline stunt at Sea World Orlando back in the fall of 1998, just as I was peaking as an adventurous 20-something grabbing the world by the balls. For the sake of time, I won’t share any of the details of that catastrophic day, the months of grueling therapy to come after and years spent adjusting (because they can be found here and here), but I will catch you up on what you need to know about me for now. I am a 38-year-old former gymnast paralyzed from the chest down, with partial use of my arms, little dexterity in my hands and not much to work with from the nipples down. For those who like medical jargon, I’m a C5-6 quadriplegic, sensory incomplete, which means I had no chance of any physical recovery, though I have regained some sensations over time (Not much, and mostly just pain. Go figure). I’ve lived this way for the past eighteen years (and I mean exactly eighteen years, because today, November 16 is my injury anniversary date), and to make up for what my body cannot provide me, I use a power wheelchair daily so that I can participate in society as actively as possible.
Having a disability has taught me a lot. It’s taught me to appreciate the little things in life, like beautiful sunsets and the touch of friends. It’s taught me not to take one day for granted, as they are gifts, not promises. It’s taught me how to be a better problem solver, and that anything is possible if you take long enough to think about how to make it happen. And uniquely, it’s given me the perspective to understand the meaning of white privilege and its power by allowing me to see the world from a different lens.
As a white woman, I obviously cannot know what it’s like to be a racial minority living in America. I do, however, know what it’s like to be a minority trying to survive in a world not made for me (which is what unites all minorities given our country was founded and continually governed by mostly straight, white men). Some of my personal challenges as a wheelchair user include avoiding stairs, dodging cracked sidewalks, searching for ramped curbs, staying clear of narrow doorways, finding sinks with leg room underneath, preferring tables that aren’t too low, appreciating mirrors that aren’t too high, using bathrooms that are too small, finding parking with enough space, remaining hopeful for elevators, even if inconveniently located, and then hoping the elevators are in service. The list goes on and on. I’ll call these microaggressions, because they’re not obstacles or problems that are necessarily life threatening, but more like small annoyances that become torturous over time. My husband describes it as “like death by a thousand paper cuts,” which I find funny because it’s painstakingly accurate (He’s not disabled, although he understands because he’s married to my adversity).
By now some of you must be thinking, “Hey! Not so fast. I thought we had laws for that!” And you’re right. Twenty-five years ago the Americans with Disabilities Act (or ADA) was created to protect those with disabilities by legislating certain public property guidelines so that accessibility was more inclusive. However, it’s also true that these laws only eased burdens, not resolved them completely. I can attest to the overall shift for a more accessible world and its successes, because I have seen and felt the changes over time (the ADA had only been effect for seven years when I initially became a wheelchair user, so we have grown together). But still, we cannot be complacent. There is still much more work to do (ahem, New York City, I’m looking at you), because no matter what the size of a daily struggle, when it’s compounded over a lifetime, like many minority microaggressions are, they become set backs that reinforce inequality.
Another way in which minorities are segregated from most are the extra responsibilities and social obligations that come with being “different.” In my case, it’s explaining my disability repeatedly each day, openly and pleasantly every time, even when I don’t feel like it, because not doing so can have catastrophic consequences. As we all know, first impressions mean everything, and mine in particular will create or shape a world view of an entire demographic. So I must stay diligent and represent myself with care, always, if for no other reason but to ease future encounters for my fellow wheelchair users. This includes being pro-active, taking time to field questions about political correctness, re-telling my origin story, educating curious children, constantly defining my personal space, communicating what violates that personal space, and doing whatever is needed to pacify the time or diffuse a potentially uncomfortable situation—for them of course, not me (My feelings are null and void until their assessment of my character is over).
With that being said (because I actually don’t mind sharing my life story obviously), I promote this without trying to create hyperawareness or more sensitivity, but instead just to make my point that minorities are tasked in ways that others aren’t. Which brings me to the biggest insult of being a minority—flat out rejection.
If you’re a human being with a beating heart, you know nothing can be more violating than alienation. There have been times that I’ve shown up to a place, even after being personally invited and encouraged with a “you’ll be fine” and “it’ll work out,” only to find out I wasn’t fine (I became the center of attention unwillingly), it didn’t work out (there were stairs galore), and then some in attendance became outraged by the lack access (my literal representation of inequality and injustice, even if unintentional, can ruin a good time for all, even those not directly effected). Isolation from a minority perspective is more than awkward, uncomfortable, or embarrassing—it can cut into the soul so deeply, it leaves scars in the form of anxiety and apprehension for next time. And there will always be a next time. Because that’s what happens when you live in a world that doesn’t reflect your perspective—your needs are left out and then you’re chastised for it.
So that’s why it’s absolutely essential we look inside our selves to find ways in which we are privileged, and then apply our privilege to others who are not. And if you happen to be a white, straight man living in America, this means using your privilege (and the fact that most of all government is represented by your specific perspective) to support, protect, and encourage all minority groups until our public offices reflect their voices, too. Because to embrace white privilege is not to be insulted or told your problems don’t exist, it’s to acknowledge inequality exists. And we know inequality exists because imagine this:
Imagine I started a campaign dedicated to exposing the difficulties of living with a disability, a world much like I have described to you already. Imagine the inspiration of my campaign: a fellow wheelchair user innocently and tragically killed while crossing the street by a driver who denies any guilt and takes no accountability. I can see with my own eyes that this death was unnecessary. And I think about how easily it could have been me, not him.
Imagine my fear.
Imagine my passion.
Imagine my anger.
Imagine I call up my friends and loop them into my cause. Imagine we take to the streets, both real and virtual, in an attempt to create awareness—not only for this particular wheelchair user but for other wheelchair users as well—because we do not want another wheelchair user to die in vain, and also because we want to create a tangible community to heal and grieve this horrific loss of life that has touched us so deeply.
Imagine how badly I want this message to be heard.
Imagine my heart racing, beating wildly and rapidly, every time I must cross the street.
Imagine me wanting to take action.
Imagine me wanting to scream louder than ever before, “Hey World! I’m here, too. My life matters! DISABLED LIVES MATTER!”
And then imagine, instead of acceptance or compassion or open ears or open hearts or open minds, I’m met with hostility and this disqualifying statement:
NO. ALL LIVES MATTER.
It wouldn’t happen. It simply wouldn’t. But that’s what happened to Alecia Garza, Opal Tometi and Patrisse Cullor, the courageous and beautiful women who founded the Black Lives Matter (or BLM) movement in honor of Trayvon Martin, a 17-year old black boy who was murdered for walking down the street of his neighborhood. And I find it unacceptable and heart-wrenching (because of course all lives matter. That was the entire point of the BLM movement to begin with).
To put this all in perspective, it’s rare that I’m ever shut out or denied by anyone with out a heart-felt “I’m sorry,” and so I consider myself a “lucky” minority. I honestly can’t fathom how other minorities survive this same world while also under attack by their peers, because frankly, I cherish the kindness of strangers.
So, join me.
Join me in using whatever privilege you can muster to show compassion when others do not.
Because after all, isn’t it our American privilege to do so anyways?
“Why wouldn’t you get it?” He asked one day while watching its commercial. “It’s basically made for you.”
And by “made for me,” he meant made for my paralyzed fumbling hands.
“You wouldn’t have to worry about dropping your phone or texting.”
As a quadriplegic of nearly seventeen years now, I should take any help I can get. But I don’t, because I’m stubborn.
And then my friend Ragan came to the rescue as my gateway technology dealer.
“Can we go into the Apple Store real quick,” he asked. “I want to try on the Apple Watch because I can’t decide how I feel about it.”
We had all just met up at one of my favorite LA shopping districts to eat lunch, scour Nordstrom’s and see a movie—our monthly hangout tri-fecta.
“Yeah,” my husband eagerly agreed to his request. “I think she needs to try one on, too.”
Not being one who likes to be told what to do, I immediately gave my husband the sideways wife eye, the scowl that says, Back off Buster! I know what you’re trying to do here…
But then I, too, quickly relented because, one, I can never say no to Ragan. He’s like my other husband, the one I don’t need to prove wrong. And two, because no matter how hard I try to fight the urge to buy Apple’s latest shiniest product, I’m still drawn to the light, airy store with new technology blazing. I find it majestic, like Disney World.
So the three of us ventured in.
And like the movie Vice Versa, as soon as Ragan and I crossed the great Apple threshold, we completely switched forms. As I became more wide-eyed and intrigued about the possibilities of Apple’s latest product, he shrank amidst the touristy crowd. From somewhere deep in the Apple technology black hole, I even heard him shrill, “Ugh, never mind. I’m already so over it. Let’s go.” But it was too late. I was sucked in and already mid-appointment with my Apple Watch expert, proudly wearing the matte white sport fit band and loving every second of it.
And since I had come this far, I thought, why not entertain the idea of buying one? So I looked over to the glass case behind me to froth at all the options.
“It’s not like I’m interested in the $10,000 one. That’d be ridiculous,” I modestly said to the employee. Next, I turned next to my husband.
“And it would be nice to not have to worry about dropping my phone… or what if I was in an emergency situation?”
I should have known this response was coming.
“Don’t give me that look. Buy it,” he replied quickly. “I’ve been telling you this all along. We could always bring it back.”
But since he’s my first and legal husband, I didn’t listen to him. Instead, although reluctantly, I gave the display watch back to the lady and then left the store feeling mixed emotions–part sad about not having the watch but also proud that I didn’t get suckered into the marketing hype… at least not on that day.
Fast-forward to receiving this voicemail from Ragan two weeks later.
“Hey Jana Banana! Ugh. I’M CALLING TO LET YOU KNOW I GOT THE APPLE WATCH and YOU MAY HAVE SEEN IT on my Facebook. THAT MEANS you have to go to the Apple store yourself and get one so I don’t feel guilty about doing it myself. That’s your mission. That’s your goal. I miss you guys! Talk later…”
We were in Florida visiting friends and family when the message came through. But it didn’t matter that we were on vacation, because within twenty-four hours I was at the Apple Store of Millinia Mall buying my watch and explaining the “must have” emergency stop to my brother-in-law.
“Florida taxes are cheaper than California taxes, duh.”
What I didn’t expect from my watch two months later was the effects it had on my quality of life, and not necessarily in the ways I originally hoped. Here are four ways the Apple Watch has challenged me to be a better human. (And then also some suggestions for what I’d like to see in the future.)
4 WAYS THE APPLE WATCH HAS CHANGED MY LIFE (+ 2 Flaws That Need Fixin’ Stat)
1. It’s a lifeline, especially for disabled people. Here’s a story that’s always horrified me. There was a slightly older quadriplegic woman who worked out the hour before me at my former therapy gym in Orlando. Every once in awhile our paths would cross when I passed her in front of the building smoking cigarettes and waiting for transportation. We never talked. We just always gave each other the wheelchair nod, the non-verbal equivalent for “Hi. I see you’re in a wheelchair. Me too. Let’s not make a big deal about it. Respect.”
One particular afternoon, one of the Occupational Therapists had asked me to do a clinic with her. When I agreed, she pulled me aside to explain why she needed me as a volunteer. Apparently the woman who normally helped her, the aforementioned cigarette smoker, had recently died in her back yard on one of Florida’s brutal summer days after her wheelchair became stuck in the grass. “She had a heat stroke and because she had dropped her cell phone no one could help her,” I was told solemnly. “So make sure you stay connected. Carry two phones.”
Now I’ve never chosen to carry two cell phones because keeping up with one is hard enough, but I’ve certainly avoided plunging into grass with no one around the after hearing this story. Then the other day I was sitting in bed stretching by myself and attempting yoga poses when my husband took the dog for a walk. Unexpectedly, as it often happens, a muscle spasm sent me flying to my back, far from where my iPhone rested beside my feet. I was like, “Fuck. This sucks. I hope it’s not too long before he’s back.” And then my watch rang and it dawned on me… I’m still connected! Immediately I called on Siri to text my husband.
“Hey babe. I fell but it’s cool cause now I have Siri to call for help.”
What a relief. As long as I’m wearing my watch, I’ll never have to worry about dropping my phone because the Apple Watch has become my much cooler “Help! I’ve fallen and I can’t get up” senior citizen necklace. Way to go Apple!
2. I’ve become obsessed with my heart rate. Before I had the Apple Watch I had no idea what my resting heart rate was, never mind what it was suppose to be. Now I’ve become obsessed with monitoring what happens to my ticker when I exercise, have sex, survive an awkward conversation, tell a funny joke and sometimes I find myself checking it for no reason at all. My heart’s finally getting the respect it deserves and I like knowing how my lifestyle affects it.
Now before ten percent of you comment on this blog providing horrible statistics about how the heart rate feature is inaccurate let me state that I feel like having some way to monitor my heart’s activity is better than none at all. And because I am a wheelchair user with a lower heart rate do to inactivity I find it exciting to learn what activities/exercises do increase my heart rate because it’s so needed. SIDE NOTE: The first 100-beat break through was after I “Whipped and Nae Nae’d” to Silento on YouTube. As it turns out that 4-minute dance gets my heart pumping more than 30-minutes on the arm bike. Who knew?!
3. I’ve realized that I don’t move as much as I thought I did. Now I know this may seem like a silly comment coming from a person who has been medically diagnosed as having three-quarters of her body paralyzed, but I really had no idea how little I moved until I started using the Apple Watch calorie counter feature. As it turns out, I’ve been mistaking being an active wheelchair user (meaning being active in the community and attending events, activities, etc) as being physically active. But that’s not the case. My electric wheelchair is the one really doing all the work. And it took the Apple Exercise App (again, I’m acknowledging it’s probably not accurate because I’m always seated) to realize that I’m not burning calories simply by leaving the house. In fact, it takes at least thirty minutes of some kind of physical exercise to burn at least a hundred calories, which is triple my daily calorie rate with no exercise activity.
So it’s no wonder many electric wheelchair users have chronic pain, myself included.
Another quick story. A C5-6 quadriplegic recently admitted to me that he switched from using an electric wheelchair to a manual wheelchair twenty years post injury and surprisingly it relieved a lot of his aches and pain. With this new calorie tracker information and knowledge of his story, I committed to a rigorous thirty-minute arm bike routine daily to see if it’d help my chronic pain and it has. I’ve become way more self-aware and I’m making attempts to be more physical, like getting out of my chair more, swinging my arms while watching TV and so on. So stay tuned. I’m hopeful for more improvements both internally and physically.
4. My social media habits have been curtailed and I’ve become more socially polite because of it.
It was about two weeks in when I noticed that wearing my Apple Watch made me much more present in the moment. When my phone sat on the table or my lap (easier access in case I needed it), without even thinking about it I’d pick it up and scroll social media out of boredom and habit. It was when I caught myself thinking, “Oh c’mon pals. I’m so bored! Post something new already,” that I realized that I was in the sad depression of a writer’s lull—the time spent trying to stay busy in order to fill the empty void of waiting for likely rejection.
Receiving phone calls, texts and notifications via my wrist-watch has kept the phone in my wheelchair side pocket most of the day, along with all the social media apps. And not only does my husband love this, I love it because as it turns out there’s all kinds of fun new material to explore on the Internetz when you’re not trolling it every second.
THE APPLE WATCH FLAWS
1. I have no problem talking to my watch like George Jetson when no one’s around, but when in public I feel like an idiot. As more people start to do it and this behavior becomes more normal I’m sure this feeling will pass, but voice commands are a hard function to use in public anyhow because it can be loud and I find the Apple Watch volume very soft (even still, the Hey Siri voice command is much better on the Watch than the iPhone).
2. The STAND reminder feature is too much. For the first week I had my watch I thought it was cute my watch would tell me to stand up and move around knowing it wasn’t possible. Then it got annoying. Then I figured out how to turn that notification off only to find out it still can’t help but appear on my phone as part of my exercise app progress update. So about five times a day, along with some positive affirmations, my watch tells me to stand up like a dick. (Imagine the face of the able-bodied Apple employee when he found this out. He was horrified).
So I wrote Apple about the issue and hope with the next update they do figure out some new innovative ways disabled people can still use the health function successfully. But until then, when my watch tells me to stand, I use the queue as a reminder to do a weight-shift (which is wheelchair talk for get off my butt so it can take a break). But here’s a heads up Apple, your device can literally save disabled lives. So stop insulting us. We are the demographic that most benefits from your clever inventions. Thank you in advance.
Congratulations on winning GUTS All Stars! In five short years, you’ll become paralyzed from the chest down from participating in a stunt show at Sea World. So enjoy every second of this victory and know that just like the fall during the obstacle course, you will pick yourself up and be just fine. As it turns out, you do have GUTS, along with gumption, courage and perseverance.
And though this opportunity came as just a silly kid-thing to do one summer, people continue to watch GUTS ALL STARS! on a web site named YouTube over and over again until it becomes a cult hit. AND GET THIS: In the future, you eventually start receiving fan letters from being on GUTS. FAN LETTERS! It doesn’t matter that you got teased by your classmates for not knowing how to paddle on a surfboard or that you’re brothers called you “Lizard Lips” for years because you drank a lot of the pool in the ‘Surfs Up’ Challenge. Because in 20-years people love the game show GUTS even more than they do now, and since you won the only ALL STAR game that will ever happen, people will love you, Jana “Wa-wa-wa-Warrior” Waring!
Some strangers will even offer to buy the Agro Crag! But you can never sell that. Ever. After a decade in your mom’s garage and another decade in between apartments, that big, bulky, heavy piece of fiberglass STILL glows a bright green neon light, as long as it’s plugged in, of course.
And the best part? Your future husband will love it more than you do. He gives the Agro Crag the respect it deserves in the way a true fan of GUTS would expect. He keeps it dusted and on display, and basks in its glow as he watches late night TV. But more than loving the cool, glowing trophy he loves you and all your flaws and imperfections.
So know you matter.
Know that every decision that you make from this point forward will shape your life in some way, and it’s usually not in the way you think… it’s sometimes worse but mostly better beyond your imagination!
Don’t be so scared to say I love you.
As it turns out love is not something that goes away each time you say it. Instead, it’s endless and knows no boundaries. So love more and worry about being loved less.
Enjoy your youth and all the awkward in between phases of adulthood.
Be thankful you’re a late bloomer and be okay with not fitting in. While you continue to evolve and confront life’s challenges, others spend the rest of their life trying to be something they once were.
Winning is good. But continuing to try when you fail is better.
Sure you won both GUTS and GUTS All Stars!, but there will be moments in your life when you fail miserably. This is the universe giving you direction. Listen carefully. Then try again. Sometimes hearing “no” is exactly what motivates you to earn that “yes.”
You are stronger and more beautiful than you think.
The GUTS tryout paper said “cute” at the top, circled in red ink. And your gymnastics teammates teammates nicknamed you “Brick House” as you traveled across the country for competitions. But it was only after you were paralyzed that you first heard the word “beautiful” and that your inner strength became something tangible. So embrace your adversity because it plays a huge part in setting you free.
And finally, thank you for being you.
Thank you for always stubbornly going against the grain. And thank you for not being afraid to seek out new opportunities. In 20-something years, you wind up happy and exactly where you want to be, even though you go in a roundabout kind of way of getting there. Do you think it’s possible the producers of GUTS knew they were mapping out our life story when they dubbed us Warrior? I still wonder. But then again, I still believe anything is possible. So I guess we’ll always have that going for us.
Good job, Warrior!
Jana “Warrior” Helms
PS. Mike O’Malley goes on to have a legit acting career! Crazy, right?
NOTE: This article first appeared on YourTango.com.
I’m fascinated by people that commit murder. My husband already knows this because I look forward to watching Lester Holt explain murder mysteries on Dateline each weekend. And each time we watch an episode I can’t help but ask him the following questions:
So… do you think he/she is guilty?
At what point do you think he/she thought, ‘Yep, murder is the only viable option left. I’m going for it!’?
I can sense my husband is starting to find this routine irritating.
“Of course he/she is guilty. And why are you always surprised by this show?” he asks. “The same thing happens every time.”
“Technically it’s not the same type of murder every time,” I clarify, even though I understand his point. I simply cannot wrap my head around what it must take for someone to end another’s life, nevertheless when it comes to lovers. So this is usually when I remind Cory he’s lucky because besides the fact I find murder morally bankrupt and cowardly, the physical aspect of killing another person is too much for me. I can’t even do needles. (But who marries someone thinking one day they’re going to murder them? I mean it can’t be that many, right?)
For all of these reasons I found myself obsessed with reading Elliot Rodger’s 140-page Manifesto Saturday night. I’m somewhat ashamed to admit this and to further admit that I put aside my current Dateline episodes for the future Dateline episode happening in real time, but I did. I had to. I couldn’t stop reading the twisted memoir of Elliot Rodgers written by Elliot Rodgers, not even after my husband begged me to stop and go to bed. I’ve truly never seen such narcissism and hate and the plotting of someone about to do something so terrible, and then know it’s a revenge that actually plays out in some degree. So I had to continue reading it all to try and make sense of any of it, except now I still can’t understand because it’s some twisted shit, and this coming from an avid Dateline watcher.
The following Monday morning I turned to Twitter to read Tweets with the hashtag YesAllWomen, a social media reaction to the tragedy in the format of an open discussion. In just 140-words or less, women of all races, shapes and sizes, came together to share convicting stories of gender discrimination, even rape. One hour of Tweets in, I felt horrified for my gender. Specifically at the comment that gender discrimination and harassment happens to every woman. EVERY. SINGLE. ONE.
Had gender discrimination happened to me? I sat there and really thought about it. Had I been harassed, mistreated, or even taunted by a man before? Strangely, I couldn’t think of a single time. So I turned to my husband and said, “I’m not sure I can relate to any of these women. I grew up in households where women were strong and in control of the family business, the family, everything and anything really. I’m trying to think of one time I’ve encountered unfair treatment by a man and I can’t.”
“What are you talking about?” my husband retorted quickly. “You were harassed less than a week ago in Chicago when that guy asked if you could have children and if you could ‘feel down there.'”
His comment caused me to sit way back in my seat. He was right. SHIT.
I had been looking at my phone when a sluggish, middle-aged man approached me at a Chicago “L” train stop and said, “Excuse me. Hi. Are you by yourself?”
“No, I’m just waiting on my husband,” I answered. Cory had gone back to the hotel to grab our bags while I remained at the closer station to the airport. I was running low on wheelchair battery power.
“Can you have children?” the man continued.
“Yes,” I replied, looking him in the eye and now also gaging my surroundings because, you know, just in case.
“So you CAN you feel down there?” he proudly stated, a flippant comment stuck somewhere in between a statement and a question.
I let his curiosity linger in the air for a few long seconds. It had taken him fifteen seconds to approach a subject that’s taken me a decade to confide in my best girlfriends. And I didn’t know how to answer the question, nor did I want to, but I felt not answering the question would cause him to hover longer.
“Yes, I can. But the sensations are different of course since my body is paralyzed,” I replied, hoping this answer would make him leave.
The man continued to inquire about the history of my disability and out of obligatory social responsibility that sometimes comes with being a wheelchair user I obliged. He must have sensed Cory’s presence because it was just a minute before my husband’s arrival that he finally left. And when I told Cory what had just happened his eyes widened and his head shook in disgust. It was only by his reaction did I truly realize how inappropriate the man’s encounter had been. Even sadder, it only took six days before I repressed this memory completely.
I continued to look at Cory completely bewildered. Now that he had reminded me of the Chicago encounter, memories were resurfacing and resurfacing fast. I thought of all the times I’ve wrapped my arm around the cane of my wheelchair to protect my purse. And then the time I didn’t expect to get the job because it was a male-dominated industry (but then I did! And everyone was shocked, and my friends and I celebrated because we had already planned to celebrate my defeat). I started thinking about how my girlfriends and I have always traveled in groups because there is strength in numbers. And then I thought of the worse thing–I thought about how I’m scared to death to have a daughter because I’m not sure I feel equipped to teach her the dangers of our society, and just in case it does happen I think about what it was my mother did so that I made it through most of my life without too much discrimination, and how I can only hope I pinpoint what my mother did so that I can share it carefully with the next generation of women.
Yikes. Gender discrimination has happened to me, and continues to happen on a daily basis.
This is why the #YesAllWomen discussion is important. I have become so good at battling the world as a woman I don’t even notice the blatant equality of it all. So thank you to all the women who have taken the time to share their stories so that I could remember mine. I’m hopeful that these same women are the one’s that take great care in shaping the minds of next generations. After all, we women have the power to do that.
PS. To the man in the Chicago, excuse me… but fuck you. You have no business asking about my vagina.
If you’re in a wheelchair and traveling to another country, the fear of travel anxiety has a different meaning than most. On top of the normal travel fears of becoming lost, not being able to communicate or eating different foods that may cause upset stomachs, we deal with issues like, “Will I be able to find transportation from the airport to the hotel?’ And even worse, “Will my hotel be able to accommodate me (even though it says ‘wheelchair accessible’ on the internetz)?”
Of course these concerns only come after the following gut-wrenching thoughts, “Did my wheelchair make it safely to my destination?” And “Oh, thank god I didn’t [Fill in the blank here: shit myself on the plane, form a blood clot, become dyserflexic from not emptying my bladder, fall out of my seat or scare/harm the child sitting next to me].”
It’s just what happens when you’re someone traveling with a disability, specifically a spinal cord injury. The good news is Japan, unlike a lot of Europe, is on your team. The country has gone to great lengths to provide accessibility to its handicapped tourists, and even more exciting, the people of Japan are willing to help and accommodate in any way possible to make your visit to their country more enjoyable. So if you’re a wheelchair user and planning your next global destination, add Japan to your list. I think you’ll be pleasantly surprised by what you find there; I was.
Below are some accessibility tips and notes I made as we journeyed through Japan. From March 26, 2014 to April 7, 2014 my husband and I traveled by plane from Los Angeles to Tokyo and back, and then once in Japan by train to Osaka, Kyoto, Nara and eventually back to Tokyo during a 12-day expedition.
TIPS for wheelchair users traveling to Japan:
1. Using Trains and Public Transportation — From the Narita airport to Tokyo and for our trips to Osaka, Kyoto and Nara we used trains. One time when my wheelchair was about to run out of battery, we caught a bus. Here are things you need to know to get around the cities efficiently:
A. There are two different train operators (sometimes even more) happening underneath the grounds of Japan. One is called the JR Line (which you should buy a pass before traveling. It’ll save you money if you plan on leaving Tokyo!) and the other is a typical city subway. It’s a little confusing at first to decipher which one is best for each use, and sometimes both is needed to get to a destination. But just knowing there are two different operating systems will save a lot of time and confusion.
B. In all train stations there are wheelchair specific stalls or gateways. This is generally where the attendants are stationed and when an attendant will ask if you need help.
C. The JR Line serves more long distance traveling like to and from the airport, and then also serves the bullet trains to other parts of Japan. If traveling on the JR Line during normal hours you do not have to make any kind of prior reservation, but you will have to wait in a (sometimes) long line to book a ticket and reserve a seat (even if you have a JR Line pass). There are two different types of accessible seating on the JR Line. There is a private wheelchair accessible room with a closing door, or a place with missing seats you can just ride up into in the regular cars (normally car 11 or 12). We used the wheelchair room on the 3-hour journey from Tokyo to Osaka, which was very cool because we could talk and enjoy our meals without interrupting others. Mostly we used the normal accessible seating (look for rows 12, 13, 14) because those were always readily available and we didn’t want to wait for the next train.
D. If using the city subways, no reservations are needed ever but you will need to purchase tickets each time you use the train. There are English words on the maps but we stuck to using colors and numbers because it was much easier to determine the proper fare that way. Once to the train, there are accessible cars that are marked and have more space for you and your wheelchair. If you choose to use the attendants, they will escort you to your destination and be waiting at your destination for departure. If you’re not good at using maps, use the attendants for this at the very least. It’s very helpful to have a guide during your first few train rides. The people of Tokyo are always on the go!
E. The train station can be one big confusing underground maze for tourists. But don’t panic. Luckily, most every stop has an elevator (I recall one stop did not have an elevator however I could use the underground tunnel to still make it to my destination, unlike new York subways where you’ll be stuck underground without any hope). Sometimes you might have to take three elevators to get to where you’re going, but there is always a way to get to where you’re going. My advice: bring patience and always look for the yellow brick ‘roads.’ Each train station features yellow pathways with circle bumps on them–these are guides for the blind. If lost or confused look down, find a yellow path and follow it. It will take you to an elevator or a map. Whether or not it’s the right elevator is entirely different question but all yellow paths lead to a way in and out of the subway. So use them. Channel your inner Dorothy and follow the yellow brick roads!
F. There are also wheelchair accessible city buses (they are marked by the universal disability symbol). We caught one in Nara (which is a smaller town even!) and it was super easy to board and de-board.
2. Ramps are called slopes. — It took us two days to figure out the Japanese translation for ramp is slope. Knowing this fact is very helpful when trying to enter a building or use public transportation. Most train attendants will not speak English but will know what slope means. They will ask either ‘yes slope’ or ‘no slope,’ inquiring if you would like assistant with a ramp or not. There is usually a 1 to 4-inch gap in between floor and train and so sometimes a ramp was not needed at all. Still, we used a ‘slope’ a majority of the time however because the Japanese are relentless about helping.
3. Hotel Room Suggestions — We stayed at three fairly fancy hotels because we like to do that when we travel (Conrad in Tokyo, St. Regis in Osaka and Park Hyatt in Tokyo). Also, I figured since these hotels host business travelers they would know more about accessibility and I was correct. The rooms were all large enough in size to maneuver though out and between doorways. While built to be accessible, the bathroom countertops were still too high and a little lower than my knees (but perfect for push chair users). There were roll in showers in the bathrooms, though a little narrow. But the rooms were great for basic wheelchair needs, and the staff are prepared to do whatever it takes to make your stay more comfortable. For example, we asked for an extra down comforter for our bed because the mattress seemed way firmer than I was used to and I was concerned about pressure issues while sleeping. A fluffy, soft comforter was added while we were out exploring for the day and it worked just lovely. So do not be afraid to speak up about your needs or concerns, someone will help find a solution. Just be willing to think creatively.
4. Disabled Cards — In regards to entering temples and museums in Japan, you may be asked to show a disabled card. This is only done so that you can receive either a discount or enter without any charge. Apparently those who are disabled in this particular country have accreditation saying so, and receive many benefits because of it. Prior to traveling to Japan, a travel agency had warned us about this and suggested we use our disability placard for parking (the one that hangs on the rearview mirror). It worked. I was able to enter some of the museums and temples at no cost, however we didn’t really push the issue because the fees were minimal and it was monies we were happy to donate to such beautiful gardens and sceneries.
5. Temple & Castle Accessibility — In a place that doesn’t welcome shoes, I had no expectations of being able to enter temples. I was thrilled to see accessibility to some of the bigger temples. Not all are accessible but once you hit up the many that are you get the idea. Be sure to see my favorites Senso-ji Temple in Tokyo, Osaka Castle in Osaka, the Nishi Hongwanji Temple in Kyoto and Todai-ji Temple in Nara.
6. Elevator Etiquette — In Japan elevators are typically reserved for only those who need them, including those with disabilities, the elderly, pregnant women and mothers with strollers. Generally wheelchair users are given first priority. After you’re in the elevator, however, don’t be surprised if the others waiting crowd in around you. The invisible personal space barrier is much smaller in Asia, and their culture is used to making the most of having the least. So try not to panic in moments of feeling claustrophobia. The elevators can be narrow and much smaller than what we Americans are used to using but the system is way more efficient. I also noticed most people wanted me to exit the elevator first, even when I insisted they go first. Surprisingly, not one foot was ran over in the process.
7. Chopsticks vs. Forks — As a C5-6 quadriplegic my hands do not have the dexterity needed to use chopsticks. Knowingly, we brought a fork with us (in a plastic bag in my purse) and used it in restaurants when needed. Although most places had forks in the kitchen when asked.
8. Anyone Rest Rooms — There are ‘Anyone Rest Rooms’ in most public places, which is a space that can accommodate most any situation. Like, really. Each bathroom had maybe four different toilets, with bars and aids, and some of the bathrooms even had twin-sized beds! Twice my husband pushed a button which he thought was the flush button, but actually ended up being the ‘call for help’ button. Even in the subway of the busiest city in the world, someone knocked on the bathroom door within one minute prepared to help. The Japanese take great pride in showing hospitality, specifically for the elderly and disabled.
9. Places not accessible — Like anywhere in the world, there are spaces that are too small or buildings that are not accessible, especially outside of the cities in small tea houses and restaurants. This was never really a problem for us because there was so much more that was accessible. For example over the course of twelve days, one restaurant communicated that my chair was too large for their small seating room. If there weren’t twenty other restaurants within reach I would have found this annoying. Instead, we just went next door. The only activity I could not do with my husband is visit the monkey reserve in Kyoto, and that’s because it took a twenty minute hike up a mountain to arrive at the reserve. Overall I was very impressed by Japan’s effort to provide accessibility. It’s one of the most wheelchair friendly countries I’ve traveled.
What am I missing? Any questions?
1. Presentation is everything.
In Japan paper money always looks brand new, crisp not crumpled. This is mostly because money there is something not just wanted but respected, and thus consequently exchanged on a tray or presented with two hands. The same goes with goods and products. Whether it was a souvenir, a dessert to go or some clothes purchased, extra time was spent in its packaging and delivery and every transaction became an event. I found this practice to be fun, like how it feels to see all those wrapped presents under the Christmas tree on Christmas Day. It also saved us from having to wrap presents at home.
2. The signage is top notch.
Maybe American signs are funny to foreign travelers, too. But I found the public signage in Japan to be quite entertaining. Here are a couple of my favorites with my interpretation of the meaning:
3. The Japanese love American culture and American words.
I was warned many people do not speak English (and that’s true, although most spoke English better than I spoke Japanese), so I was surprised to hear American music in most stores and see the English Language in a lot of places. The funny thing was most of it didn’t make sense, like maybe the sound of the words appeal more to their culture than the actual meaning.
For example, I stumbled upon a ‘Smelly’ jewelry line and poster advertisement for a band named ‘Bump of Chicken.’ Regardless of the intention, I found the effort to use the English language endearing. It was really cool to be in a place so far away that adored my country, and yet know this was not always the case. Also those Japanese that can speak English will stop to help if you appear lost or just lost in translation. Bless those souls that helped us!
4. Elevator systems are efficient.
Most of the elevators in Japan are very narrow, like only wide enough for a stroller or my power wheelchair but certainly not both. Surprisingly this is not a problem because the only people that use the elevators are the people that really need it—a.k.a. disabled people, the elderly, pregnant mothers and mothers with strollers. Enforcing these rues are signs. In the case an able-bodied person was waiting in line for the elevator—from what I saw only because of traveling with large suitcases—I was always offered to cut line and go first.
Other cool elevator design features included buttons located by the doors and the sidewalls for easy pushing for someone who is actually in a wheelchair, no turn around needed. While some had only entrance most elevators had one way in and a different way to exit, which was such an efficient system as opposed to what I see going on here a lot–long lines of able-bodied people too lazy to step on an escalator and too scared to fill an elevator to capacity.
5. Everyone BYOW’s.
There are no paper towels or dryers in public Japanese bathrooms. Therefore everyone carries his or her own washcloth to dry off after hand-washing. Not only is this earth friendly, it’s germ-free friendly. This is a practice I think we all should get behind in the states.
6. They’ve found a way to make baseball fun and entertaining.
I’m a sucker for live sports and there’s something magical about sitting in an iconic American baseball stadium with a draft beer in one hand and hot dog with too much ketchup and mustard in the other. But let’s face it. Baseball without food and booze can be boring. At the Hanshin Tigers game in Osaka, a full brass band played as each individual baseball player took to the field, accompanied with an individual cheer/song for that player that all the fans of the stadium sang. Then, at the end of the seventh inning, there was a balloon release, which was so much fun, like Slip ‘N Slide childhood fun. Never has baseball innings seem to go so fast, and this considering the language barrier. (I still have no idea what was being sung).
7. Public trashcans are rare and yet places stay super clean, even the subways.
So it took me awhile to wrap my head around the idea of carrying my trash around all day but that’s just what the people in Japan are accustomed to doing. And once the idea that I was responsible for my own waste—and it wasn’t just someone else’s job—I did become more conscientious about what I consumed.
8. Sick people wear masks.
In America, I feel like anyone that wears a paper face mask is considered tainted or a danger to society (except surgeons and actors on “Grey’s Anatomy”) . In Japan anyone who feels symptoms of sickness, indeed is sick or just wants to take a proactive role in health wears masks. It’s a little jarring to see at first because it’s something different culturally. But once accustomed to the idea, I thought it brilliant and thoughtful… and then scary. On a daily basis I would say half the people we interacted with wore masks, which made me think that the number of ill in America on any given day is probably similar—we just don’t know that everyone is walking around sick, which now seems extra frightening to me.
9. Experiencing cherry blossoms in bloom is like witnessing unicorns jumping over rainbows.
It’s no wonder all the locals sit beneath these trees and picnic all day, walking through a park of cherry blossom trees is quite magical. The flowers on the trees are just so dang beautiful and fluffy, like clouds, or heaven even. And then you become aware that these trees only bloom for two weeks during the entire year, and so then the moment becomes so much more special.
The cherry blossom symbolism was not lost upon me. It is so the Japanese culture to show patience and respect for these trees all year, just to enjoy the two weeks of beauty that follows. Hooray for Asukura (Spring)!
10. Children are treated like adults and consequently act accordingly.
My hats are off to the Japanese mothers. It appears they are not afraid to do anything and everything for themselves, including putting a kid on the front of a bike, one on the back, carrying two bags and looking so adorable doing it. I also noticed children were communicated to in mature ways, instead of just blown off as being a kid. The result? I did not witness one toddler meltdown, not even at Disney. Not to say that these things never happen, but I never saw a bratty child misbehave or cry in public and I was okay with that.
11. In regards to women’s fashion, cuteness beats sexiness every time.
What a relief to learn not all the women of the world are celebrating duck faces while taking squished boob pictures in a bathroom mirror. (Although there is a huge photo booth movement happening there, including making the subject’s eyes overly big and round, like anime cartoons. It might be equally bizarre). So most of the women dress preppy with collared shirts, pearls and 2-inch heels (think J Crew) while the teenagers dressed like schoolgirls, with lots of shorter skirts and cardigans (think Harry Potter). I don’t recall seeing any exposed boobage, or even collarbones for that matter. I do recall seeing some kneecaps and thinking, ‘She must be really cold’ or ‘Whoa. It must be drafty up in there.’ But then again I don’t do temperatures in the teens well, not even in Celsius.
12. Surprise! The country is wheelchair friendly (way more so than Europe).
I never know what to expect when traveling outside the good ole’ US of A because we are the only country that has specific laws dealing with disability and equality. So imagine my surprise to land in Japan and find my very own attendant at train stations that provided ramps (or slopes as they call them). And then there was the accessibility into some of the oldest temples in Nara in Kyoto and the castle in Osaka. I couldn’t believe how wheelchair friendly the entire country, and then they way people treated me. There was no staring or weirdness, just quick accommodations and solutions to transporting problems. Yes please! (Stay tuned for a full wheelchair-users guide to Japan coming soon.)
Every time I see a wheelchair blog titled “What You Need To know About Spinal Cord Injury” or in the case of one shared on The Huffington Post most recently, “8 Misconceptions of Life With Paralysis,” I cringe. It’s usually because the article was written by someone newly injured, emotionally charged and all “Yes! I can have sex! I can do anything!” While I can understand the intent and heart behind these articles, I also find them somewhat painful to read. Here’s why:
8 Misconceptions About Spinal Cord Injury Misconceptions
1. DISABLED SEX HAPPENS, OMG – Sure it’s a topic that’ll grab the attention of the few unicorns that post disabled blogs to begin with, but it’s much more than that. Besides the normal perks sex brings to relationships, health benefits I’ve noticed in regards to spinal cord injury include settling unwanted muscle spasms and increased results on bone density tests. So, yes, sex is definitely an issue worthy of more discussion, just not in the teenager way of “Yeah, Butthead…heh, heh…I do it.”
2. ASKING QUESTIONS ABOUT DISABILITY IS NOT OKAY – I fear blogs that communicate, “I’m tired of being asked these questions—here are the answers,” send the wrong message. Not everyone may be into talking about his or her disability (which you should use some judgment in the approach) but I don’t mind answering questions about it, even multiple times, because education is what evolves thought. So ask me questions. It’s how we learn; every child knows that.
3. ‘HOW TO’ BLOGS ARE AWESOME – Or not. “I’m here to set the record straight!” and “Let me tell you how to act!” are things parents scream at their children when they’re in trouble. If you want people to treat you like a normal adult, then do the same with your actions. Set the example.
4. EXTRA ATTENTION SUCKS – Maybe Justin Bieber would say this at the moment… no, nah, not even him. It’s human nature to seek attention. Call me a narcissist, but I enjoy compliments and acts of admiration. Wheelchair life is difficult, and I’ll take any and all freebies out there. Thanks in advance!
5. I KNOW BECAUSE I AM ONE – When one person speaks as an unauthorized representative of a group it shouldn’t be taken too seriously. After all, it’s one person’s viewpoint.
6. WE’RE JUST LIKE YOU – One common theme throughout most wheelchair blogs is “It sucks,” usually followed by “We’re strong!” and “Just like everyone else!” Which one is it? Until the spinal cord community comes together as a whole, let’s stick with “It sucks” –we receive more attention that way. [Refer back to #3]
7. ALL PARALYZED PEOPLE ARE GOOD WRITERS – Not every disabled person should be a writer yet it’s something a lot of us flock to because it’s accessible. However, just because we do it doesn’t mean we’re good at it. You know what I’m talking about, HuffPo.
8. EVERY SPINAL CORD INJURY PERSON CAN RELATE – Spinal cord injury is not a hereditary trait; it’s a disability. While we might collectively share similar experiences, at the core we are all very different when it comes to expressing ourselves and sharing our disability. My best free advice is to be a good human and use your best judgment at all times (and know that sometimes that won’t be good enough, and that’s okay).
Like a litter of adorable adoptable puppies, my wheelchair attracts physical contact, head tilting and high-pitched voices from all walks of society. After fifteen years of being paralyzed I’ve become accustomed to the attention that comes along with adversity.
In fact, I once thought I was special.
Now it seems disabled people are everywhere, especially on TV and on the big screen. Sometimes the performances are cringe-worthy and other times they’re legit. And while I have no desire to be in front of a camera (I enjoy criticizing and being criticized safely from my living room, on the other side of the TV) I’d be lying if I said I wasn’t the slightest jealous of these people because they’ve found a way to cash in on their “specialness.” And that’s what you do when you’ve been given adversity—you turn it into an asset.
So maybe I’m not so special.
As more disabled people start to step up and step out into the spotlight, I realize I’m more like those in wheelchairs than I want to believe. Still, I continue to write because I’m hopeful that someone may take interest in my story one day (and I can properly communicate it).
In the meantime (and while continue to type and then immediately hit the delete button), here is a list of disabled people taking
my the limelight:
Who & What: Kevin Michael McHale in “GLEE”
The Bit: He’s an actor that plays a paraplegic that can never fulfill his dream of being a dancer, so he sings.
Thoughts: For an able-bodied person he sits down real good.
Who & What: RJ Mitte in “Breaking Bad”
The Bit: He’s a drug dealer’s son who happens to have Cerebral Palsy.
Thoughts: RJ does actually have Cerebral Palsy, although it’s not as pronounced as demonstrated in the show. Rumor has it he would stop taking some meds to display the real effects of CB on his body during filming. Ballsy.
Who & What: John Hawkes in The Sessions
The Bit: A man that is paralyzed from neck down from childhood polio and seeking a sex therapist.
Thoughts: Pretty amazing movie. Disabled people and sex is such a taboo subject. But I can tell you it happens. In fact, sex has improved my injury-related Osteoporosis. How’s that for natural remedies? [Cringe] You’re welcome.
Who & What: Francois Cluzet in The Intouchables
The Bit: Rich quadriplegic interviews for caregivers and then develops a relationship with one that is life changing for both parties.
Thoughts: If only all caregivers were as cool and strong as Omar Sy.
Who & What: Blair Underwood in “Ironside”
The Bit: He’s a cop that was paralyzed from a bullet on duty and forced to retire, only to be appointed a special consulting position to stay on the scene.
Thoughts: It was a remake. And the series was quickly cancelled. Enough said.
Who & What: Michael J Fox in “The Michael J Fox Show”
The Bit: He’s a dad with Parkinson’s Disease.
Thoughts: With all respect of the bravery it takes to let people see your vulnerabilities, I found it hard to understand what Michael was saying (nevertheless watch him tremble). Maybe more of a reality show of PD would have been better than a sitcom? Regardless, he is brave for putting it all out there.
Who & What: Jamie Brewer in “American Horror Story: Coven”
The Bit: She’s the witch with Down’s Syndrome that can read people’s thoughts.
Thoughts: She’s excellent. I’m jealous. When I watch her I don’t even see her disability.
Who & What: Tiphany Adams, Auti Angel, Angela Rockwood and Mia Schaikewitz in “Push Girls”
The Bit: A realty TV show about four paralyzed women living in Hollywood.
Thoughts: Just as this show starting airing previews I was putting together a book proposal. At first, “I was like, “nooooo,” because I was toying with the idea of sharing my story and it had seemed like all these ladies had somehow beat me to it. And then I watched the show… and quickly realized I could not be anymore different than any of these girls. Not to mention the show seemed so coerced. Eh. Not totally impressed but can applaud the effort (from afar with, like, a golf clap).
Who & What: Hillary Baack in The East
The Bit: She’s a deaf actress that most recently played Eve, a deaf character.
Thoughts: I love Hillary but I’m totally biased because we’re friends. And even though we both live in Los Angeles we live in different zip codes, which is practically like living in different states. Regardless, we managed to meet up for lunch a couple weeks ago. That’s right a wheelchair person and deaf person having lunch together, just the two of us. Sounds like a sitcom, right? Well it’s real life. Our life. Love Hillary. Love her passion. And love that she’s a wife, a mother, an actress, a writer and breaking through all the stereotypical boundaries.
And the list continues…
Do you think disabilities are being portrayed the correct way by the media? And what actor/role model has effected your perception of disability?
NOTE: I wrote this piece about my daily routine many years ago, before I was brave enough to share my disability candidly and before I met my husband. A lot has changed since then (like I no longer live alone and I no longer watch the Today Show, but CBS This Morning with Gayle King, Norah O’Donnell and Charlie Rose. Hi guys!). Still, I can recall these days. And I can see how far I have come.
Each morning, I wake up on my side; I have not moved from that position the entire night. My mouth is dry. I reach for the jug of water that is within arm’s reach, gulping the water through a straw. Though the splash of cool liquid feels good in my mouth, it does nothing to relieve my fat, swollen tongue. I grab – actually it’s more like fumble – for the remote lying next to my cell phone and turn on The Today Show. I wait for my morning Help to arrive.
I hear the door open – The Help is here. She walks into my room and then straight into the master bathroom. I listen to see if she washes her hands. She does – this is good. I hear what sounds like The Help collecting the smaller urine bag from the sink. She then brings it to me so she can exchange it for the larger urine bag used at night. She must use alcohol wipes in the process. It’s important to be sterile. A green tube connects my bladder to these bags, and also acts as a portal to the outside world. There is always a high risk for infection. Alcohol wipes. Infections.
After the ceremonial bag exchange, The Help takes away the large pillow from in between my knees, then removes the small pillow from underneath my ankle… or more like two inches above it. Using two hands, she rolls me to my back. I feel pain. It’s my shoulder. I think about how long I should wait before I take Tramadol. If I take it too early, I’ll crave more the rest of the day. If I take it too late, I’m irritable. Regardless, the 50mg of Tramadol makes me dehydrated and sometimes constipated. But not Advil, so I’ll take that first. And then pop the painkillers as needed throughout the day. An MRI shows I have torn a tendon in my shoulder – the one that connects the arm to the rotator cuff. It’s rumored I need shoulder surgery. For now I’ll just medicate. I hate hospitals and the germs that infest them.
It’s time for my morning leg exercises. I don’t want leg atrophy. I want to look normal, or as normal as woman who has been paralyzed for ten years can look. I want to look like an able-bodied woman who is sitting down. This will take dedication, patience, and ultimately around fifteen minutes of leg exercises each day. The Help stretches and exercises my legs while I lay on my back and watch. Sometimes I give direction; it’s important to exercise in good form. Some nurses are better than others.
Every other day is a bowel program day. Today is that dreaded day. The Help rolls me to my left side and replaces the pillows between my knees and under my ankles. It’s important to protect my bony parts at all times. I cannot chance getting any red spots, which eventually can lead to bedsores. She gathers the supplies: Wipes. Vaseline. Gloves. Enema. Under pads. She will use them in the reverse order: Under pads. Enema. Gloves. Vaseline. Wipes.
After fifteen minutes, The Help physically checks to make sure there is no more poop. There is. Five more minutes and it’s clear. Time to clean up: Wipes. Wash cloths. Water. Soap. Remove the pillows, roll me over. I think, Should I shower today? Can I handle another another fifty minutes of giving instruction? Not today. I decide what to wear. I describe it to The Help without looking into my closet. She will grab it while she’s in the closet retrieving more supplies: Gauze. Neosporin. Paper tape. She will remove the old gauze from around the super pubic tube site (that’s the medical term for where the tube goes into my bladder). She checks the site for signs of infection: Redness. Puss. Swelling. Discharge. There’s none. She wipes around the tube with a baby wipe and places a dab of Neosporin on the area. Add gauze. Secure tape. I am ready for underwear. I am ready to get dressed.
I usually wear a dress or a skirt; it’s what’s practical. I sit up and attempt to suck in my paunchy belly. If my abs worked, I’d do sit-ups. But they don’t so my belly looks like a child’s, round and robust. The Help disagrees with me. She pretends my paunch doesn’t exist. “You’re too skinny,” she says. If she were talking about my atrophied legs, I’d believe her. My legs are too skinny, but still thicker than most other wheelchair users. I know this because I am very competitive. In one flailing swoop The Help throws the dress over my head, and eventually pulls it down until it scoots under my bum. Finally, I am dressed. I am ready for my power wheelchair that is plugged into the wall, charging.
The Help unplugs the 300-pound machine and wheels it over to my bed. Once in place, she locks it. Together we move me from the bed into the seat. I do this by pushing down on the bed with my arms and sliding my butt over into the chair inch by inch. She holds my legs and my dress together so that they don’t get in the way. She must pay extra attention to my legs; they can become cumbersome. After I plop myself into the chair, she places my legs down from the bed and onto my wheelchair foot plate where they will spasm and move up and down for approximately thirty seconds. Their movement is not a miracle – it’s annoying. I need to put on shoes, which weigh my legs down. My shoes are one size bigger than my feet requires. They must be loose. No pressure points allowed. I know my feet will swell by the end of the day – poor circulation. I like sandals. I like to see all parts of my feet at all times. Inspect them. Count my toes. I’m halfway ready to start my day. It’s taken at least forty-five minutes to an hour of teamwork to get this far. I am halfway there.
I roll into the bathroom and park myself underneath the sink. Looking into the mirror, I don’t see the same person I saw last night. I see bedhead. A mohawk. I must wash my hair, but later. First, I must wash my face, then dry it and smother it with SPF 15 lotion. I do not want skin cancer, nor do I have time for it. Should I bother with make-up this morning? Not yet. Maybe not ever. It’s too early to decide. I make my way to the kitchen sink. That’s where I will wash my hair. The lotion on my face reappears in white globules thanks to the water that’s been splashed on my face during my hair wash. I roll back into my bathroom and stare into the 10x mirror. No one should do this. It’s horrifying. Today I will wear make-up, but just blush and mascara. I massage my ears with Q-tips. This feels nice. I brush my short hair to the right side. On cue, The Help sprays it with hairspray while it’s wet. I will brush it again later. No Clark Kent hair; it’s tacky. I’m a lady. I’m wearing a dress. And I’m finally ready to start my day. It’s been over an hour and a half since I first opened my eyes.
Finally The Help leaves.
I am all alone.
I check my email. I lean to the side of my chair and lift my butt out of the seat. This is called a weight shift. I check Facebook. I do another weight shift. I fuck around on Google. Weight shift. I must do a weight shift every thirty minutes for the rest of the day, and for the rest of my life. Weight shifts are important – without them I will get red spots, then bed sores, even though I’m not technically in a bed. I should spend fifteen to thirty minutes of my day doing weight shifts, or hovering over my cushion, but I’m not that consistent. I just intentionally move around in my chair all day, leaning forward, to the side, scooting my butt forwards and than backwards. People say I look antsy. I am antsy. I cannot physically move three quarters of my body. Still, I try.
I cannot cook for myself. I can, however, use a debit card. I meet a friend for lunch. I look at my plate and bombard my brain with questions.
Am I being healthy?
What is in this food?
What is the kitchen like?
Did the chef wash his hands?
Is this food going to upset my tummy? Like, am I going to shit my pants?
I ignore my brain and take my chances. I eat just enough to make the hunger pangs go away. I find things to do in the afternoon. I write. I teach. I volunteer. I go outside to read. I do anything and everything to keep my mind busy and occupied. But I must not be too committed. My body could fail me at any second. Bowel accident. Bladder trouble. No urine. Not good. I find more ways to stay busy. I work out at a gym. Thirty minutes on the arm bike. Weights. Strengthening bands. I’m still wearing a dress. The outfit I choose each morning must last me the entire day, unless I can find someone to help me change later. No, thank you. That frankly is too much work. That’s where I draw the line.
I help friends who need help studying, moving, and relieving boredom. I run errands. I go to doctor’s appointments. I read more. I write for my blog. I think about dinner. Dinner? Where can I get dinner? Does anyone want to go out to eat with me? Not today. I’ll go to my parent’s house. They always make dinner. Afterwards I could go out to a bar. Or I could go home and watch TV. Since hangovers make my morning process longer, I go home and wonder if anyone else is as self-absorbed as I must be, and I watch TV.
When I’m ready to go to bed I call The Night Help. This person is usually different than The Morning Help. It’s nice to see different faces. Upon The Night Help’s arrival, I start my nightly routine, which is the morning process in reverse: I wash my face. I dry it. I put lotion on without sunscreen. She takes out my earrings. I look into the 10x mirror. Nobody should do this. It’s horrifying. I pick my face. And my nose. I take my medicine. One 4mg tablet of Zanaflex for body spasms. One 10mg tablet of Ditropan XL to relax my bladder. Two cranberry pills. One Once-A-Day vitamin. Compared to other people with my injury, my daily pill intake is small. Still, it’s too much for me.
It’s time to leave my wheelchair – aka freedom machine – and scoot myself back into bed. I dream about how I used to fall into bed like the people in those old Nestea commercials. Remember those? When the actor opened his arms wide and fell back into a pool. That would be so nice. Instead of taking the plunge, I drive my wheelchair over to the side of my bed and parallel park beside it. I raise the right arm of my chair. And with help, I transfer into bed, scooting inch by inch. My legs spasm and fight against me the entire way. I fly back into the bed, not gracefully at all. Nothing like the Nestea commercial, more like the quickness of a slingshot. I surrender, only to have to be dragged back up to a seating position. I must slip out of my dress and into a nightshirt. The Help actually does this for me. She rolls me to my side, the opposite side of the night before. She places the large pillow between my knees. She places the small pillow under both my ankles. She exchanges the small urine bag for the larger night bag. She uses alcohol wipes. It’s important to be sterile. I have a tube that goes directly into my bladder. There’s risk of infections. She covers me first with a sheet, and then with a blanket. She places the TV remote, the fan/light remote, and a bottle of water next to my head in case I need any one of them when no one is around. She cleans the small urine bag with bleach and water. I remind her to adjust the temperature and turn out all the lights. She leaves. I am alone with just my cell phone and my thoughts.
I try not to think of the possibilities of what can happen at night and what I can’t do by myself. Instead, I think about my day. Did I have an $80 day today? That’s how much it cost to pay The Help today. I debate whether my day was worth that much cash while staring at the TV. Sure it was…I decide. I lived to tell about another day…
That is, if someone arrives in the morning to start the entire process all over again.
Feeling balanced and hypnotized by the high that comes from bending and stretching, Cory and I left our private yoga session only to be slapped in the face with reality. The elevator button would not light up. After a few minutes of waiting, Cory went up the stairs to see what was going on. The security guard couldn’t explain it, he just yelled, “It not working. No power.”
I overheard Cory from below the two story marble stair case, “Okay, but my wife is down in the basement in a wheelchair. Do you know when the power will return?”
I had just taken the elevator one hour prior.
“What you doing in the basement,” said the grey-haired man, leaning over the marble railing. He appeared highly irritated by my presence, and also highly irritated by life.
“I was doing yoga?”
The grumpy old man wrinkled his brow, scoffed and then walked away. I turned to Cory who was standing between us and at the halfway point of the stairs with his arms out to the side in confusion.
“What’s he doing?” I asked.
“Nothing,” Cory replied.
“Jesus. Is there someone he can call to help you bring up my wheelchair to the top? You can carry me first… is there is a chair up there I can sit in?”
Cory returned up the half flight of stairs, scoped the scene and then slowly walked down the steps towards me.
“There is a chair.”
“But is he calling someone?”
“I don’t know. I think so.”
“Why did he look at me like I was crazy just then? What else does he think I’m doing down here in this dirty basement? Stealing old broken refrigerators?”
“I don’t know,” Cory answered, deflated. Then with one scoop he picked me up, carried me up two flights of stairs until we arrived in the building lobby. Just past the security station—where the old man watched incredulously–and next to the wall was a small, metal chair with a black back and no arm rests. Cory gingerly placed me in the seat as a small Latino man approached us.
“You need something?” he asked politely.
Cory explained the situation to what appeared to be the building maintenance man, and then explained it again. For some reason men refuse to believe my wheelchair weighs 400-pounds.
“We’re going to need more people,” Cory stated, finally getting to the point.
As Cory and the man disappeared down the marble stairs I watched the security guard tell person after person, “No. Elevator broke.”
Some people shrugged it off and started heading up the stairs. Others inquired about its status. And then one man entered the lobby in grey slacks, a coral dress shirt, shined shoes and aviator glasses. His walk—high swinging of arms with head held high—suggested he was somebody. Or more like he thought he was somebody. I watched him push the gold UP button beside the elevator, and then I watched him do it again when the light didn’t turn on. Eventually he turned to the security guard who was pretending not to notice the commotion.
“What’s going on here?” the business man asked in an accent that was not quite Long Island, more Jersey Shore.
Upon learning the news of the broken elevator the man stomped his feet onto the floor like a child throwing a tantrum.
“When is it going to be fixed?” he demanded.
The security guard unsympathetically shrugged his shoulders, shook his head side to side and turned his back on the guy, which made me feel a little better. At least the abrupt aloofness was a feeling he shared with everyone.
“You want me to walk up six flights of stairs?” he shouted. “No way. That’s ridiculous.”
Out of the corner of my eye and on the other side of the small lobby, I caught a glimpse of my husband struggling to carry my wheelchair with the help of two other men.
You have to be fucking kidding me, I thought. If I wasn’t too verbally paralyzed by the fear of falling off the tiny chair I was clinging to I would have said something. Instead I looked back over at Cory who was oblivious to the scene that was happening before me. He looked up at me, smiled and gave me a thumbs up before running down the stairs again to pick up the heavy battery packs he took out to make the chair lighter for the men helping him. I turned back to the man-child that was now on his cell phone, explaining his horrifying situation to some poor soul on the other end of the line.
“I’ve got to go. The fucking elevators aren’t working and I can’t get to where I’m going.”
Frozen in the chair, I stared at the man, mouth agape, and watched him walk outside the lobby door still complaining about the inconvenience of a broken elevator. On his way out he walked right passed Cory shoving the batteries into their place on my wheelchair. Needless to say, he didn’t notice.
“Did you hear that guy making a scene about the elevators?” I asked Cory as he was picking me up to place me back in my chair.
“Yeah, I overheard something about it.”
“What is wrong with people?” I asked. “I wanted to shout, ‘Hey Dick. Sorry about the inconvenience but um… my husband just had to carry me and my 400-pound wheelchair up two flights of stairs. I think you can walk your perfectly healthy legs up six.’”
After setting me down onto my cushion, Cory looked at me eye to eye and smiled.
“How’s your skirt? Are you comfortable?” he asked.
“Yes, thank you. You’re amazing. Did you know that?” I said. Then I grabbed his face and gave him a much deserved kiss on the lips.
As we exited through the lobby door, hand in hand, I spotted the man standing on the street next to a smoker. He was telling her about his dilemma now that the elevators aren’t working.
“Yeah, looks like my whole day is now ruined.”
“What a dick,” I said to Cory as we passed him. “Yoga was fun.”
“Yeah, yoga was good,” he agreed.