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99 Problems — #13 I Am Not The Boss of Me

catThere are days that being paralyzed blows. There is no other polite way to say it. It’s so much more than not being able to stand up, walk or run. There’s the chronic bladder infections and urinary tract infections and poor circulation with threats of blood clots. There’s bowel accidents and caregivers and wondering if caregivers are going to show up or possibly walk out and quit for no good reason. There is back pain from sitting too much and shoulder pain because the activities you’re doing are being done at half mast thanks to muscles that no longer fire. And then there’s pressure sore concerns and the dreaded bed rest. If you ever wonder why or how I can sit and smile at the end of the day, it’s because I’ve made it through the day with only having to deal with one of these problems.

Over time my life has become a game of daily problem solving.

Recently I woke up with an abrasion on my left hip region, a teeny tiny scrape inconveniently placed on a boney bit that is considered a high-pressure area when I sit in my wheelchair. Where did this unexpected wound come from? I’ve created a couple theories. Either I bumped it on something accidentally while being carried to and/or fro my wheelchair. Or this new cushion system I was trying didn’t not work as planned, and the plastics I was sitting on irritated my skin until finally it bled red. Either way what I do know for sure is that one morning I was told there was a tiny red spot on my hip–yet nothing to be too worried about–and then the very next morning I was told the red spot had turned into an open wound. What had happened in between the two observations? Nothing extreme, unless you consider puzzling dangerous. As I recall it, the day was full of normal activities–sitting, writing and working on an African Safari puzzle while watching shitty reality TV.

Now this wound was not really a gaping wound like you might be thinking. It wasn’t even as bad as road rash. The scrape appeared tiny, smaller than a dime even… yet that didn’t (and usually doesn’t) stop the consequences from being catastrophic. Any time the skin on my bum looks red or irritated it’s grounds for bed rest. Why you might ask? Grab a barf bag and Google Image the words ‘bed sore.’ The images will traumatize you. They traumatize me. That’s why I look at them every time I’m on bed rest and feeling upset about laying around over a teeny, tiny mark that would be no big deal to anyone not paralyzed. I do not want my body to be added to that horribly graphic list.

The other problem is that skin doesn’t heal very quickly. It also does not grow any faster when you watch it in anticipation. And the only thing worse than waiting for skin to heal is waiting for a deeper wound to heal first. I know this because one time I had to be bed rested for eight long, terrible months. This latest little abrasion put me on bed rest for seven, long boring days and then seven more days after a false alarm that the torture was over. The wheelchair stuff I can deal with, even all the secondary issues that come along with it. But put me on my bed rest and order me to do nothing–and I fall apart emotionally. I do not know how to do nothing.

Now I know some of you, especially new mothers, crave  downtime and wish for those few seconds to be alone with nothing to do. But before you get too glassy-eyed in your dreaming let me assure you that bed rest for me is really torture. Here’s why.

Reasons I Become Emotionally Stunted While On Bed Rest

1. I am not Julia Roberts in a Cotton commercial. Therefore I’m not lounging in bed carelessly, whipping around in sateen white sheets and looking all sexy in a see-through cotton white tank top. Remember over three-quarters of my body is paralyzed. Thus my body is awkward, uncoordinated and delicate as a crane made of rice paper. Consequently I must lay on a memory foam mattress with pillows between my knees, under my ankles to protect my bony bits. Nothing about how I must be positioned is sexy, I promise. It’s usually not even comfortable.

2. Being on bed rest can cause other bed sores. So to prevent future pressure sores I must be rotated and turned like a skewer on a grill. This would be no big deal if I could move myself but I can’t.  So every few hours someone has to aid me in this awkward and painstaking event while neighbors next door try to make sense of what’s causing the grunting and moaning sounds emulating from my room.

3. This is not a sick day. Since the wound does not hurt or cause any kind of illness, it’s hard to justify why I must lay down for such long periods of time. It’s not like I have the flu and feel like shit. It’s the opposite. I feel great and well rested. And with each passing day I become more antsy and restless because I’m expending no energy.

4. But you could read a book with all that quite time? Wrong. These paralyzed hands barely let me turn pages while sitting up perfectly and now you want me to do it lying on my side fighting gravity. Please.

5. But you could use a Nook or a Kindle? Don’t be an asshole. To have a true reading experience pages must be touched and flipped. The book must be weathered and also have it’s own smell. It’s part of the whole experience. However for the record I’ll note that any tiny mechanical device is still too difficult to maneuver with these handicapped hands, not to mention I hate reading sideways.

6. But you can watch movies? Or TV? I’m not above movies or TV and in fact that’s all I really do on bed rest. I become hypnotized by the boob tube, zombie-like even. Since my husband is an avid movie goer I have seen most featured films. And since I’m a reality TV junkie there’s not much I haven’t watched. Still I use Netflix and find shows on DVR Demand for the cost of $8 per movie, which can make for $24 days without even leaving the bed. That’s expensive.

7. There are no breaks from bed resting. I recall loving sick days as a child because my parents worked and I had the freedom at home to raid my parents cabinets and do whatever I wanted without anyone watching. But that was also back in the day when I wasn’t paralyzed. On “sick days” now there’s no trips to the pantry or refrigerator. There’s not even a trip to the bathroom. I become completely dependent on the hands of another, which sounds pleasant but actually is so difficult. Don’t believe me? The next time you play hooky from work try not to step a foot on the floor for the entire day, not even for food. I dare you.

8. I’ve been known to disappear during bed rest. When on lock down I don’t return phone calls or texts. If I do respond it’s usually a one worded text like ‘Thanks.’ I’ve been known to stop emailing and participating in social media. Why would I isolate myself at a time when I am forced to be isolated from the world? There are two reasons. The first is simply that it’s too hard both physically and emotionally. Gravity doesn’t work well with me when I’m laying down and if I can barely operate a phone there’s no use in setting up my computer. Plus I don’t have anything to say. Who really wants to hear about my wounds or bed sores? And considering that I’m doing nothing I have nothing to talk about. The second reason I am slow to interact with the world is because on bed rest I am at my worst. That’s not a side of myself I’m willing to share with a lot of people.

The good news is I have a husband that loves me unconditionally. He dotes on me daily, but even more so on the days I’m at my worst. Somehow I’ve managed to share this part of my life with him without scaring him away. Before he came along I used to lay around and wonder if there was anyone in the world that could understand the hardships of my life, especially because at times I don’t even understand it. No one should feel guilty for wanting to sit in their wheelchair, and yet some days I do. But that’s the affects of spending lots of time on bed rest. There is a constant fear that it may happen again at any given second. As early as tomorrow my life could be canceled and put on hold thanks to a tiny scrape that magically appeared on my bum, the most sacred part of my body now that I can’t stand erect.

In the fifteen years I’ve been paralyzed I’ve come to learn that I’m not the boss of me. I must do as my body asks, even when it means canceling vacations, stopping work and bailing at the last minute on friends. Needless to say, there are some days being paralyzed fucking sucks. Because being on bed rest blows. And I hate it. The second it is over, however, I’m always pleasantly surprised by the amazing life awaiting me. And then I’m all happy again. Because I did it. I created that.


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99 Problems — #12 Looks Like We Might Need Kickstarter To Start A Family

twinsYes, Cory and I want to rear children one day. And yes, I can carry a full term pregnancy as a quadriplegic. But just because I can doesn’t mean I should–and in fact I’ve opted out of this life experience. It may sound selfish but I don’t want to risk my health for the sake of my future snot-nosed kids. In my opinion, and this is what I explained to my husband, I’d rather exercise rigorously for nine months to be fit and ready to help with the babies than be weak, unable and like another child that needs more undivided attention. Cory agrees. He 1) wants help and 2) more importantly doesn’t want anything to happen to my health. We are going to need each other. Thanks to many of our friends who have started families, we are aware children are a lot of work, especially for two selfish writers who have waited until their mid 30’s to have children and have been doing what they want for a very long time (especially, especially when one of us faces chronic health issues due to a catastrophic injury). That’s why not becoming pregnant simply seems like the responsible thing to do. So how are we going to start our family? We’re going to find a surrogate, just like Carrie Bradshaw… er, I mean Sarah Jessica Parker and Matthew Broderick. Only we’re not celebrities. And we certainly aren’t rich, yet (however Cory sometimes still plays the Powerball lotto. So there’s that).

This past Friday we met with a reproductive IVF specialist. He was a short, squatty old man of Arab decent. As soon as we entered this office, with medical diplomas hung on the wall as expected, I noticed him sizing us up. As much I was prepared to interview him, I was not prepared to be interviewed myself. In fact it never crossed my mind that we would need to be assessed to see if we could be parents. After all, I’ve been watching irresponsible teen moms on TV for years now. We are at least responsible adults that pay rent on time each month. Still, I guess we needed interrogating. So he first asked me about my injury and then Cory about how we met. Clearly Cory’s health record was boring in comparison because he is a healthy fit 34-year-old man who has never been in the ER until he met me. So what fascinated the doctor was not my husband’s clean bill of health but instead learning that Cory met me post spinal cord injury–and then married me with damaged goods.

“So you met her after this?” he inquired, pointing to me and waiving his finger up and down. “In. Ter. Resting. Why her?”

Cory looked to me and then back to the doctor sitting behind his polished, wooden desk.

“I guess you can’t help who you fall in love with. I saw her and that was it.”

It was silent for the next few seconds. And then the doctor looked at me with his dark brown, beady eyes, like looked deep into my soul. He still didn’t get it.

“This is a real relationship,” he continued.

“Well I like to think so,” I said.

“So what do you want?” he asked. “Boy, girl, what?”

Suddenly, it felt like we were purchasing an American Girl doll.

“Actually we would like twins, one boy and one girl,” Cory answered.

“What we would like is a healthy baby… ” I added. “But if we lived in a dream world, of course we’d like to have twins. One of each and then be done with it.”

I didn’t tell the doctor that we are also open to adopting a child that was not ours one day. Since we both come from families of three siblings, we’ve discussed three Helms’ children in the future. But this was not the time to be greedy, especially considering that we presently have no children at all and could easily change our mind upon the first delivery.

“Yes, yes,” the doctor said. “Very good. You two will make good parents. Any questions?”

Somehow we had passed the doctor’s parenting test. Although we did have a lot of questions, most pressing, “How much does this all cost?” But he didn’t have that answer. That discussion was supposed to be saved for the financing lady later. He was there to provide medical answers, he explained. And to his credit the man seemed to know what he was talking about.

Quickly I learned IVF has come a long way since the last time I did any research on it, which was never. Nowadays doctors can test the genetics of embryos before inserting them into the uterus, thus how the gender is determined and why the doctor asked us specifically what gender of child we wanted. Other things I learned included us adopting our child(ren) at the time our surrogate is six months pregnant. This is done while the infant is still in the womb so that when the child(ren) are born he/she/they are given our name at birth and handed to us upon delivery, as opposed to the surrogate. I learned that we have to go through many blood tests for the FDA so that our embryos don’t infect the surrogate (which makes sense but just something that never occurred to me. Trying to be funny, I asked if the testing was necessary in the case the government was still shut down at the time of implant. Based on the doctor’s reaction, I surmised he either didn’t get the joke or he didn’t find my humor funny). He did explain that this kind of surrogacy is only legal in two states. And finally I discovered that there are a lot of selfless women who are willing to donate their bodies as ovens, at the cost of counseling and a fair amount of cold hard cash. How much cash exactly? I was still dying to know.

Next, we met with a liaison who would be our key point person and scheduling assistant during the entire process. She was plumpish, cheery and appeared pregnant, although I was too scared to ask. Especially after she said we looked like downtown LA people, which could mean many, many pleasant and yet unpleasant things. So I kept to pleasantries and only engaged when necessary until finally the finance lady came into the room.

“There’s that calculator,” I said aloud to make Cory laugh aloud.

I could feel my husband next to me, shaky, jittering, and tapping his foot. I imagine his head was ready to explode off of his tall 6’3” body, an unfortunate reaction to information overload and the consequence of him thinking what this potential train wreck might cost. The truth was I was scared to learn the final number, too. I have been quietly saving money for some time now because I knew this day might come. I also already knew that we do not have enough money at the present moment for the entire surrogacy process. Days before the official doctor’s appointment I did internet research that preempted me for what was coming. In fact, when I learned the estimated numbers I immediately felt guilty and started to second guess my decision to not carry a baby. I mean, technically, I can do it. Although to not carry seemed so much more practical and cautious and responsible and thoughtful, you know, characteristics I thought parents (or future parents) should have.

“No. It’s not worth it. Your health is more important.”

That’s what my husband said to me after I told him that maybe I should just carry myself because having a surrogate may cost us up to $100,000… and that after all, technically, I can do it. And the medical bills would be covered. But not for her. We would have to pay for her medical bills out of pocket, as well as her care and counseling and lawyering and…

“Then we might need to start a Kickstarter account to have a family,” I told him.

“We will figure it out,” he replied. And then laughed. If you know my husband–a man that will sell anything on Ebay for a few extra bucks–you know this a huge milestone. He already loves our future children enough to put his frugalness to the wayside. He is going to make an excellent father.

And I know we will figure this out. No doctor can guarantee me safe health during a pregnancy, and I’m already a high risk human being. What the doctor can guarantee is the science to make it happen and a bill for $80,000-100,000. Like any good mother, I want to do what’s best for my family. I want to be strong and able and helpful and not on bed rest. So we will precede with the IVF with what money we do have–turns out that’s the only financial information the finance lady could precisely provide–and find a way to pay for the other $60,000-80,000 later. We have one year from the time of implant to freeze and find a surrogate, plenty of time for some fundraiser car washes and yard sales.

And so it begins.

The Helms’ household will be selling their souls soon in exchange for screaming twins, hopefully a healthy baby boy and healthy baby girl. Because if were are able to order our kids up like the doctor implies than the very least we can do is attain two for the price of one (plus a few more thousand for extra labor)–what a deal.

 

 


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99 Problems — #11 I Drop Things On The Floor, A Lot

OUT Of ReachEach time my husband leaves town I’m reminded of how helpless and clumsy I am. That’s because I drop nearly everything, all the time, so much to the point its embarrassing… even when no one is watching. A pen, my phone, the remote control to the TV, keys, drinks, sunglasses, a toothbrush, a fork–there’s really no limiting the objects I’m willing to accidentally toss on the floor. When Cory is home it’s really no big deal. Within seconds the problem is solved. He reaches down, grabs my mistake and plops the object on my desk, or in my lap, or in my hand, and that is that. Sometimes I don’t even have to say anything. The thud from whatever I have dropped will trigger him to scream from the other room, “Coming.” Or “Got it!”

Some say that is true love. I believe it. My dropping habits annoy even me.

When I drop an item and Cory is not here–it’s a full on crisis. Since I cannot reach to the floor from my electric wheelchair, I look to the dog and cat for assistance. Like, just maybe, Riley will gallop over like Beethoven and grab the object with her slobbery mouth, and then pass it over to Zola, the ninja cat, who will find a way to deliver the object to me. But they are never helpful. They sit and stare at me dumbfounded, which is how I imagine I might look to them. With little alternatives, I am forced to channel an old TV friend, Mac Gyver, and find a way to help myself. Kitchen utensils, my car keys, the cat’s toy rat attached to string and a bamboo stick–everything and anything becomes fair game for use. And then literally it turns into a fair game–Can I get the bamboo stick in the cell phone case hole, push it through to the other side, balance the phone on the stick and then toss it into my lap? The answer is yes.IMG_0091

Yesterday, it took me just 35-minutes to do so. It wasn’t pretty, and I nearly gave up. I was prepared to go downstairs and ask the guy at the front desk for help. But just when I least expected it… it happened. With string around my wrist, car keys dangling and my cat’s toy, I somehow managed to pick up my cell phone off the floor. I have proof. The animals saw me do it. I bet they were thinking the same thing I was, This is so sad. And also pathetic. 

I can drive a Toyota Sienna but I can barely pick an object off the ground (if at all, sometimes there are failures). If I think about this statement for too long, my mind nearly explodes.

Damn these handicapped hands.

◊ ◊ ◊

Missing one problem? At ease waringis.com soldier. They’re here.
99 Problems #1 The Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers
99 Problems #7 House Wars
99 Problems #8 I Have Beef With Matt Lauer
99 Problems #9 I’m Having An Identity Crisis
99 Problems #10 Disabled Traveling Is No Easy Feat

 


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99 Problems — #10 Disabled Traveling Is No Easy Feat (Part: 1)

ADA TravelingI’m often asked what happens to my wheelchair upon boarding an airplane. The answer is: like luggage, it is tagged and shoved into the bottom of the airplane–and I do mean shoved. While everyone else looks for places overhead to stow their over-sized travel bags, I wait for the thud that is my wheelchair being dropped into the plane from some kind of elevated machinery or crane. Then I wait and listen for the sound of metal scratching metal, which is the sound of my wheelchair chair being dragged along the plane’s belly. After these two things happen I am elated–it means my wheelchair has at least made it on board and will arrive at my destination. Will it arrive in one piece? That’s a concern for later on. There are plenty of other things to worry about in between take-off and departure, like water in-take, how to go to the bathroom and when the Ativan kicks in.

Traveling in a wheelchair can be difficult, but it’s still possible. Since I love seeing new sites I put in the effort. But it’s no easy feat. Here’s why:

8 MORE REASONS TO HATE FLYING (If You’re In A Wheelchair)

1. LONG CHECK INS  Upon checking in any airline I’m always asked what kind of battery fuels my electric wheelchair, wet or dry? I say dry because I know it’s what gets me to the gate faster. I once made the mistake of saying, “I’m not sure.” This led to a 20-minute delay at the counter and much confusion. Eventually, after a discussion between five airline employees, it was decided that a maintenance guy would come dissect my wheelchair. He came to this conclusion, “I think it’s a dry cell.” His response allowed me to complete check-in and move on to the gate, which is where I was asked the same question again by a different employee. And then again by two other employees. Lesson learned: Just say dry, always dry.

2. AISLE CHAIRS An aisle chair is a tiny straight back chair with a ton of velcro straps, usually located at the end of every boarding walkway and right before the airplane boarding entrance. Never noticed it before? That’s because it’s something not worthy of any attention. At 5’2” and 115 pounds and my butt barely fits on the seat, like literally I hang off of each side. That’s why someone is required to strap me to the chair like I’m in a psycho-ward, or worse a child’s car seat. Once tied down like Hannibal Lector I’m then asked to keep my arms crossed to prevent injury while being rolled back to my seat, which sadly is not in first class. Thanks to the airplane’s narrow aisle, on the way to my seat, even with my arms crossed, my shoulders rub and bounce off each first class seat back like I’m training to be a defensive lineman. How do larger people wheelchairs travel? By car I imagine. Lesson learned: Find a man to carry you on board, aka a husband.

This is an aisle chair. Scary, right?

This is an aisle chair. Scary, right?

3. LONG PLANE RIDES Of anyone on the plane, minus maybe the flight attendants, my flight is always the longest. Because it takes some time for my wheelchair to get from the top of the gate to the plane’s belly, I usually have the opportunity to board first. This is a perk. Because it takes just as long (and sometimes longer) for the chair to travel from the belly to the gate, I also depart last. This is frustrating. I, too, want to scramble to grab my things and race off the plane upon arriving at my destination. However, instead I must wait at least twenty more minutes and then meet up with everyone at luggage pick up. Lesson learned: Relax. The luggage is never there anyway.   

4. DANGLING FEET I always take my seat cushion with me when traveling. One reason is so that I know it doesn’t get lost in pursuit and the other reason is to make the trip as comfortable as possible. Weight shifts (or pressure reliefs) are hard to do in an airplane seats thanks to neighbors and metal square arm rests. So the cushion is kind of necessary. Unfortunately, it comes at the price of sitting three inches higher than normal. Thus my feet dangle above the floor, which again makes me feel like a child strapped in a car seat. In the past I’ve used books, my purse, an airline blanket and pillow or whatever is available to stabilize my feet. The problem comes when the flight attendant asks me to remove the stuff under my feet for take-off and landing.  While I understand the reasoning behind the request– people in the window seat need a clear get away path in case of emergency– I don’t care. 1. As a quadriplegic and someone with no trunk control, it seems more dangerous to have my legs swinging freely upon take off or landing (without any emergency). 2. If there is an emergency, I doubt it will be my foot rest that is the problem. And I’m going to block the aisle anyway. No one is leaving that plane without me.  Lesson Learned: Nod your head yes and always respect your flight attendants. Eventually, they stop asking questions and making requests.

5. NO BATHROOM ACCESS It’s cute when flight attendants say they have a stow away aisle chair in case of a bathroom emergency. At least they’re trying to be thoughtful. No wheelchair person, at least not me, ever uses the tiny bathroom in an airplane. The transferring alone would cause a scene, let alone maneuvering an aisle chair through the aisle and bathroom door and finally to the toilette. Like really, I wonder if this has ever been done. It seems impossible. Lesson Learned: Don’t drink very much before flights.

6. BATHROOM ACCESS (for neighbors) Non-wheelchair passengers can visit the bathroom easily. Thus they drink freely and in excess, which obviously makes me envious. The even more fun part is that since I cannot stand up and must be lifted into my assigned seating, I am forced to use aisle seats. I can only hope those sitting next to me saw my wheelchair pre-boarding. If not, it becomes quite difficult to explain to a strangers why they must straddle me in order to get to their seat. And then straddle me again when they go to the bathroom. Lesson learned: Pray for an empty seat or someone not wearing a dress.

7. ASKING FOR HELP I’ll admit I am a diva when traveling alone but it’s only because I cant do anything for myself. So I’m all, “Can you grab my bag?” and “Will you plug my headphones in?” and “Can you switch the channel?” Bless the strangers who are assigned to sit next to me, especially upon landing. Since I have no torso control and pilots must slam on the brakes, I have to ask, “Can you hold me while we land?” Lesson Learned: Have no pride.

8. FINAL INSPECTION I have trained myself to have anxiety upon any landing. Besides all the factors listed above, I can’t help but think, Did my wheelchair make it? It doesn’t matter if I sensed its boarding or even if the flight attendant tells me my chair was successfully boarded, for the first few minutes after landing I will worry about what to do if it didn’t. I will visualize myself wheelchair-less and mentally paralyzed in this new place to the point of panic. And then my chair will arrive. The aisle chair process begins again, but in reverse, until finally I am reunited with my chair. The joy of being paired with my machinery washes away the anxiety for a second, until I must inspect for damages. Only once have I lost a footplate. Scratches are no big deal. Connected wires are. My battery will sometimes come separately, boxed and bagged, even though I said ‘dry.’ Lesson Learned: Expect problems. It’s nice to be pleasantly surprised by perfection.

After arriving at my destination, the anxiety continues. I will have needed to arrange accessible transportation and accommodations. But that’s a whole different blog altogether. I have learned to expect the unexpected. It’s what traveling is all about–thrills and new experiences.

◊ ◊ ◊

Missing one problem? At ease waringis.com soldier. They’re here.
99 Problems #1 The Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers
99 Problems #7 House Wars
99 Problems #8 I Have Beef With Matt Lauer
99 Problems #9 I’m Having An Identity Crisis

 


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99 Problems — #9 I’m Having An Identity Crisis

imagesRecently at a party in Los Angeles, a wined enhanced woman-child trapped me in the corner of the room to preach about name changing and its terrible traditions. It was in her opinion that a woman should not take her husband’s last name simply because of marriage, and that doing so displayed weakness. Listening, it was difficult for me to contain my excitement about the news I recently was a newlywed and had just visited the god-awful Social Security office located in downtown Los Angeles just days prior, like literally was in the process of changing my name. But I did. I let her finish her rant first before making her feel awfully uncomfortable.

“Well… I mean… it’s okay if…” she started. God bless drunk people at parties. They’ll tell you anything you want to hear… but only after they tell you things you don’t care to hear about.

I probably should have told her that I was not offended by her statement and that i can understand why a woman would not change her name, but I was having too much fun watching her idle in her own awkwardness. The torture also seemed like fair punishment for trapping me in the corner against my will.

“I mean maybe I would do it if my boyfriend James really wanted me too.”

“Really?” I said, leaning in closer to her. “I don’t think you should. Not even for James.”

Her brown eyes opened wide with curiosity upon this statement.

“Well, I guess we’ll just have to wait and see,” she said.

It should be a rule that until someone becomes married, nothing he or she says about marriage should be taken seriously–especially when intoxicated. I told Cory on one of our first dates that I was “not the marrying kind.” And I now am four-months into marriage. Go figure. I imagine the woman from the party will not only take James’ last name (or some other brave soul’s name when he dumps her), I bet she quits her job to stay at home and raise the kids. After all, love makes you do crazy things.

As soon as I knew I wanted to marry Cory I knew I wanted to be a Mrs. Helms. There were no qualms about it.
As non-traditional as I can be at times, like having a wedding with no bridal party and no bridal bouquet tosses and no first dances, the idea of becoming a Helms seemed romantic and special to me. Although, Cory felt differently.

“You know, you don’t have to change your name if you don’t want,” he said one day out of the blue.

His comment had surprised me. I had assumed, he would have assumed, the name-changing was a must. Then again, he is a pretty modern guy for being raised in the suburbs of Florida. I should never assume anything (this is something learned after marriage).

“But I want to,” I replied with no hesitation.

And I did want to. I had already thought long and hard about it after the proposal. Immediately, I ruled out hyphenated our names for the sake of future children. Besides having to write out a long last name over and over again, I had concerns about testing. In the case that school systems still use scantrons, like I had to use back in the day, I wanted to be proactive. I personally hated circling in so many bubbles before each test, and that was when my first and last name only contained ten letters. So to tack on a hyphen and an extra five letters? No thanks. I decided I’d never want that burden (or confusion) for our children. There would be no hyphens.

I was committing to change but I wasn’t necessarily ready to rid myself of Waring either. I had thought long and hard about that, too. The name Waring is special to me in that it’s the only connection I ever had or will have with my father, who sadly passed away from a car accident when I was two months old. And then there’s the small fact that I based my entire writing career on the last name Waring, including this blog, three published books and numerous magazine articles. So instead of dropping Waring completely I came up with the idea to move it. My middle name Marie would be replaced. And I wasn’t that upset by it. Marie was a name I had no attachments to and also a name that was only used by my Mom when I was in trouble as a young child. It’s also every other woman from the late 70’s middle name.

So that’s how I came up with the name Jana Waring Helms. I found a way to change my last name, and yet still save my maiden name–a compromise and the best of both worlds. And I mentally committed myself to this new identity eagerly and freely until it was time for the actual name-changing process.

Then I went for it and discovered the name-changing process wasn’t as romantic as I had first imagined.

I was made to feel dumb at the Social Security office by a man who clearly hated his job. I barely passed my California Driving test. I became scared to go any amount of time without credit cards. So I waited–and am still waiting–to inform any financial institutions of my new alias, as well as some other billing formalities. I was told I should probably locate my living will and update its information, which was hard enough to complete the first time. I became confused by having two names so I created a new ‘Helms’ Gmail thinking it would help, and then had to reload all contacts. Right now, I still am like 60% Helms and %40 Waring and sometimes feel like I’m smack in the middle of an identity crisis, which is why I was so proud to sign as a Helms for the first time yesterday but mostly still sign Waring. To be technical, my signature is more like a scribble. So does it really matter? I’m not sure. I feel like it should matter to me. In the past four months, I have quickly learned that the physical act of changing one’s name is a gruesome process with a whole set of different emotions. But even still, I say it’s worth it.

In the midst of all the name-changing madness, Cory surprised me with an unexpected conversation one day. I was sitting at my desk.

“I really appreciate you changing your name to Helms,” he announced suddenly. “It really means a lot to me.”

“But I thought you said it didn’t matter…”

“I know what I said. But now that it’s done it seems special. And I appreciate all the effort you put in to make it happen. So thank you.”

“You’re welcome,” I replied, smiling.

And it does feel special to be Mrs. Helms. He is right. With this new name I am the person I’ve always wanted to be–all grown up.

◊ ◊ ◊

Missing one problem? At ease waringis.com soldier. They’re here.
99 Problems #1 The Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers
99 Problems #7 House Wars
99 Problem #8 I’m Having An Identity Crisis

 

 

 

 

 

 

 


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99 Problems — #8 I Have Beef With Matt Lauer

ann-n-mattBesides appearing to be a pompous asshole and having a hand in Ann Curry’s morning news departure, Matt Lauer has been misinforming viewers about paralysis for decades. And for this, I loathe him and his leg-crossing ways. To be fair I haven’t watched anything Lauer since Curry-Gate so perhaps he has changed his ways… on second thought I’m sure he hasn’t. (I hear he is still using his biting-the-tip-of-the-glasses intimidation tactic while interviewing.) Moving forward.

About a year after my spinal cord injury, I casually was watching the morning news when Matt Lauer teased an upcoming story about an “inspirational” paralyzed man. Naturally, as someone who just joined the world of spinal cord injuries (SCI’s), the story captured my undivided attention. Sure I wanted to know more about my new state and paralysis but I was more interested in knowing what deemed this guy, who turned out to be a football player, as inspirational. What had he done? How did his story make it to the national news? Could he teach me to be a better paralyzed person? I had so many questions that needed answering, still, even months outside of the hospital. So in my tiny room I sat in my electric wheelchair as a C5-6 quadriplegic, tuned into my TV box. I couldn’t wait for Matt Lauer to wow me. Only when the “inspirational story” aired, I found myself feeling outraged not elated. He had gotten it all wrong. Fucking Matt Lauer.

As it turned out, the football player wasn’t so much inspirational, as he was lucky. After months of physical therapy and as Matt deemed it “hard work and determination,” the guy ended up walking again. He had miraculously gone from paralyzed to normal in less than a year. And while I was happy for this former athlete, his story also was a bit infuriating. I, too, had worked hard. I, too, had determination. Yet I wasn’t awarded the opportunity to walk again, and it wasn’t for lack of trying. The implication and message blaring from Lauer’s own mouth–that hard work and dedication miraculously cures paralysis–was a lie and hard to process. I suddenly felt defeated, like how I imagine a person with terminal cancer feels at a marathon finish line of cancer-free survivors–where, and if at all, did I fit in this mess? Thanks a lot Matt Lauer.

Let me explain further.

In the world of paralyzation, one year is a big deal. It’s the amount of time it takes for spinal cord swelling to go down, which is something the spinal cord does in injury to protect itself. So for the first year, spinal cord injury prognosis’ are more like good educated guesses. With all do respect to doctors and experts, there are tests and ways to categorize the injury early on and in the near 15-years of my injury I’m sure technology has increased immensely to aid in these endeavors. But the human body is an extraordinary thing, and the facts are that spinal cord injuries are like snowflakes–not one is the same. Sure there are similar injuries but no one, not even experts, can predict how a particular human body will heal itself. This is how and why “miracles” happen. The football player had not worked harder than me. He also wasn’t more determined. He was at his one-year anniversary and simply hadn’t injured his spinal cord as severely. But that’s not what Matt Lauer would have led you to believe. He seemed to be certain the “miracle” stemmed from “hard work” and “determination” and “preservation” After all, the doctor’s said “he would never walk again.”

Ugh. The mixed messages. My doctor told me I was never going to walk again, but then what doctor is going to make a promise he can’t keep? No doctor is going to say, “You are paralyzed but only temporarily. Hang in there kid.” The reason why is because no doctor can be sure of a paralysis outcome. So they deliver the worst news with a hopeful attitude making each new SCI think, I will be the exception. Or even more deceiving, I will ask God and he will fix it. And then the one-year wait begins. But everyone is not as lucky this particular football player.

It was towards the end of my first year of paralysis when my step-grandparents asked me for a private conversation in my parent’s living room that featured blue carpet.

“Are you sure you’re doing everything you can to walk again?” my step-grandfather asked me. By the way he looked me directly in the eye I could tell he was very serious. Apparently and according to him, my paralysis had recently been “causing problems in my parents marriage.” Surprisingly, I hadn’t noticed. I suppose I had been too busy trying to learn how to live and pass time with a body that no longer worked.

“Excuse me. What are you talking about?” I replied slowly. “Are you effin’ serious? Of course I’m doing everything I can to walk again.”

To this day I can’t recall how this conversation ended. Probably because I was so blind-sided by the topic (That would also explain why I used the word ‘effin when talking to grandparents, something I normally would never do). I imagine that I eventually drove away from the floral couch, where my grand-dad sat, confused to whether or not I should be insulted by such harsh words. Either way, I now believe Matt Lauer can be blamed for this too. While I have no direct evidence that Matt Lauer’s interview caused this conversation to happen, I do know people sometimes believe too easily what they see on TV and that misinformed people spread misinformed information like wild fire.

I also know that again and again I have watched Mr. Lauer interview paralyzed people and incorrectly attribute their success to the human spirit when in fact it’s more likely due to science. History has proven over and over again the only thing we know about the aftermath of a severe spinal cord injury is that some people will walk again and some won’t. And neither outcome should be cited as more inspirational than the other. Any time someone is involved in an injury so serious it’s devastating, and according to Paralyzed Veterans of America (www.pva.org) someone in the United States is injured every 48 minutes. Very few of these new injuries will become the kind of walking-story Matt Lauer defines as inspirational, and I can only hope it isn’t taken personally. No one opts to stay in a wheelchair because it’s the easier route, that’s something I can vouch for.

So can someone tell Matt Lauer that he needs to stop? Like everything, altogether. Just stop. Thank you much.

Disclaimer: I am a spoiled handicapped person that is happily married with two furry children, a dog named Riley and a cat named Zola. Since I was injured on the job, I am fortunate enough to have resources to pay for my very expensive lifestyle. Thus, I do not consider myself worthy of any inspirational title either. For the record, I consider myself lucky. I also am a loyal Ann Curry fan. Sorry I’m not sorry Matt.

◊ ◊ ◊

Missing one problem? At ease waringis.com soldier. They’re here.
99 Problems #1 The Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers
99 Problems #7 House Wars

 

 


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99 Problems — #7 House Wars

Old_Timey_by_bear65My husband Cory and I share an incredibly peaceful living situation. It’s quite an amazing feat considering we both work from home and are literally together all day, every day. Our routine goes something like this: We wake up. We eat breakfast. We try to write at some point, usually it’s after we eat lunch and Cory goes to yoga. I workout too, if I’m not being lazy. We take breaks, watch TV or read a book. We compare notes. And then somehow it’s evening and we’ve successfully managed to spend another day in each others face’s with great joy. Soon, I imagine we won’t even need to talk to each other but instead just grunt and nod. We can already finish each other’s sentences.

Even in dreamy domestic bliss, we still are human and flawed and there are times that we disagree. Since animosity happens so rarely in our household the differences–whether great or small–often feel of epic proportions. Like the women of “Snapped” who murder their husbands, during these moments I can see how the illogical can become almost reasonable. “I was just cutting up some watermelon and then suddenly my husband walked by and stabbed him instead. It seemed like the right thing to do.” Um, no. I’m kidding. I would never follow through with a plan like murder… completely.

Mainly, the two contentions in our home are the patio door and the remote control.

The patio door issue is kind of silly. I enjoy having the patio door open unless it’s chilly (which is nearly every morning in Los Angeles). Cory thinks the patio door should always be open so the puppy can freely walk in and out for her water. So every morning we circle each other opening and closing the door, until finally it’s noon and it no longer matters. And then about 7pm the circling begins again. He opens. I shut. He opens. I shut. And so the cycle continues until one of us becomes too lazy to make a move or we go to bed.

The remote control, on the other hand, is a much more complex issue. Sure, it seems unfair that my husband is the primary remote control user (but to be honest he’s much faster and more efficient at using it than me). Yes, it drives me crazy that he likes to watch three shows at the same time, constantly flipping channels in between commercials. There have been times he has lost the remote control and then had a ball blaming the loss on me. The ole’ “You had it last,” tennis match. But what drives me the craziest–more than any of these silly little spats–is that my husband has an unexplainable obsession with pushing the mute button at anytime while watching TV.

Say there’s a commercial that he can’t fast forward through–mute.
If someone is publicly making a fool of him or her self on TV–mute.
To be more specific, if a guy is trying to impress a girl on The Bachelorette–mute.
If I ask a question–mute.
If he doesn’t like what I’m watching–mute.
If he receives a text and the response requires thought–mute.
If the app Words With Friends dings on his phone–mute.
If the remote is in his hand and it’s been too long without silence–mute.
If he walks in the door from walking the dog–mute. (This is a double offender because it’s a mute, immediately followed by opening the patio door.)

As someone who has never used the mute button on the remote control, EVER, his overuse is insanely irritating. So I must reply to the muting or else it will go unnoticed.

“Wait, what are you doing?”
“I wanted to hear what he said.”
“Why did you do that?”
“Sound please.”

I can tell by the way he looks at me he has no idea that he is a “mute button” abuser. It’s just something that comes naturally to him, perhaps a habit stemmed from his bachelorhood. Thankfully he always obliges to my request to return to volume. Sometimes, if he’s feeling extra nice (or guilty), he even rewinds so I can hear what I missed via instant replay. Even so, the interruption is bothersome, especially because it’s an action that is completely unnecessary (at least in my mind. He obviously would argue otherwise).

And then–most recently–the muting was taken to a whole new level.

We were vacationing in Seattle and I was sitting in the bedroom part of our two-room suite, applying mascara at a little wooden desk. Directly above me and to my right a large flatscreen TV hung on the wall. Airing that morning was “Kelly & Michael Live,” a show I always watch (or have on as background noise) when getting ready in the mornings. I was in mid-lash application when my husband–of just four months mind you–strutted into the room from the other side of the suite, the place he had been watching his own TV while sitting on his own couch, and without even a greeting, he grabbed the remote to my TV, pushed mute, dropped the remote on the desk, and then casually strolled past me. On his way to the the bathroom he yapped on, something about how dumb talk shows are and that he couldn’t understand why I watched them. It was a rant I had heard many times before.

Immediately, I stopped what I was doing. I placed my mascara brush back into its bottle and twisted the lid on tightly. Slowly I pulled away from the table and quietly made my way into the suite’s living room area, the place Cory had just stormed in from and also the place he had claimed as his lounging zone. I needed a minute. I needed to take a couple deep breaths and also construct my own instant replay of what just happened, you know play it over in my mind to make sure that I wasn’t the crazy one.

I made mental notes mid-review.

1. Yep, I was minding my own business putting make up on and watching a show I watch every morning while getting ready.
2. Yep, he actually walked in and muted my show without asking.
3. Yep, he has access to his own TV in his own ‘lounging zone.’
4. Yes, I am well aware he hates “Kelly & Michael.”  He’s told me a million times that he hates silly banter on talk shows and yet this does not sway my opinion. Why does he not realize this?
5. Conclusion: It was dick move that needed confrontation.

With confidence I re-entered the bedroom. “You know…” I began, hands trembling. “I think it’s really rude that you walked in here, muted my show, and then went on an entire rant about how dumb and stupid talks shows can be. I know you don’t like talk shows. You’ve told me, almost one hundred times. I get it. I really do. Still. I’m going watch talk shows… that’s what I do. I would never–NEVER–walk up to you while your watching Sports Center, grab the remote, mute the TV and then go on a tangent about how I think sports are stupid. That’s because I respect you…  and I’d appreciate it if you could do the same.”

It was a speech worthy of applause, yet as each word floated away from my tongue I felt more and more ridiculous. I had created a triumphant speech about a remote control, or yet the tiny mute button on the remote control, while on vacation in a beautiful city we had yet to fully explore. Better yet. I don’t even like “Kelly & Michael Live” as much as I love having background noise. Not to mention, I would never mute Sports Center because I love sports. Like those crazy women on “Snapped,” I snapped, only I didn’t have any weaponry within reach to seal the deal. I just had words, words accompanied by unfavorable facial expressions. I suppose I could have dug out my mascara brush and painted him black. That would have made me feel better for one second until I realized it was just a waste of perfectly good, expensive make up. So after my verbal attack, I sat frozen in silence, embarrassed yet prideful, awaiting a response.

“I’m sorry,” he said, walking up to me open-armed. “That was bad.”

“I’m sorry, too,” I replied, wrapping my arms around his waist. “I just went all crazy wife on you, ‘Snapped’ style.”

In the middle of the hotel room we hugged and held each other for a good amount of time, long enough for Cory to fully process what I had just said.

“You’re not plotting my murder or anything? Or are you?” he finally asked.

“Of course not,” I answered, laughing. “Or am I?”

For that moment the ‘mute’ war was over. However, the fact remains that at times he prefers silence. And I always prefer noise. We are in trouble, but we know it.

◊ ◊ ◊

Missing one problem? At ease waringis.com soldier. They’re all right here.
99 Problems #1 The Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers

 


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99 Problems — #6 I Hate Parking Garage Ticket Dispensers

ticket-dispenser-parking-structure-11551322Most people don’t understand the complexity of quadriplegia.

“But you can move your arms.”

“But I can’t move my fingers, see. I also don’t have any triceps or function, which means I can’t do things like raise my hands over my head.”

“Oh, I thought quadriplegia meant you couldn’t move any of your upper body.”

“No, it technically means my injury level, or the place where my spinal cord is damaged, is in the C part of my vertebrae, which is above the waist. For laymen’s sake it means function of my upper body has been effected. So yes, I can move my biceps. But no fingers. No flexion. No triceps.”

“Hmmmm. Okay.”

Now imagine not having this conversation. Imagine entering a parking garage and having to stop behind a black Toyota Sienna. It appears the person in the driver’s seat is grabbing his/her ticket. So you wait a minute. You wait three minutes. You wonder, What is the hold hold up? You honk your horn. You stick your head out the driver window in attempt to get a glimpse of the moron in front of you who is wasting your precious time. You wait one more minute, but are running out of things to do on your iPhone. What the fuck, you ask yourself. What’s happening? You beat the steering wheel because you’re antsy and frustrated. Then finally, you decide, the situation is no longer working for you and you mentally create three options of action:

1. You could continue to honk your horn until the van moves.
2. You could reverse, back up, and drive up to a different ticket box.
3. You could get out of your car and walk up to see what the problem is.

What do you do?

Perhaps you prefer combining the options and do all three. You honk, you reverse and then you drive to the next ticket box all the while inspecting the situation. In passing you might even flip the middle finger, because man, does it feel good to do so. Regardless of the action, or what you choose to do, you should consider yourself lucky. In seconds you will grab your parking ticket, zoom into the garage, find your parking spot, and carry on with your life without too much emotional damage. If you live in Los Angeles, parking is a little more difficult. So the double set-back–first the waiting at the ticket booth and then driving up endless garage floors with no success–will probably make your head explode and cause a mini melt down. But even still, you shouldn’t let it get to you. Already, you are way better off than me. I am the person in the black van, and chances are I’m still sitting in front of the ticket dispenser hopeless, frustrated, exhausted and embarrassed because ticket dispensers were not made for people who have no finger dexterity, which is understandable. Logic suggest that those who cannot operate a ticket dispenser probably cannot, or at least should not, drive. But thanks to technology, many quadriplegics and people with no finger dexterity can. And do. So how are we suppose to grab these tickets? I know I cant. And that’s why I hate parking garage ticket dispensers. It’s a battle I lose every time. Here’s why:

1. Each time I drive into a parking garage and approach a ticket dispensary I become overwhelmed with anxiety from previous failed ticket attempts. Immediately I prepare myself for the worst, which is not what successful people do. I brace myself for failure. And already I am starting from behind the starting line.

2. Sometimes I do not pull up close enough to the ticket machine, so I have to undo my chest strap and seat belt (things I need to drive) in order to have more room to maneuver. This is a process.

3. When cars pull up behind me I start to panic because I know this process has only started.

4. When able to push the button (success!), the ticket spits out hard and fast. By the time I can collect myself and reach for the ticket it unfortunately is sucked back in.

5. A cycle begins—the cycle of me reaching for the ticket and it getting sucked backed in every four seconds. The game goes on for minutes and sometimes longer because I am determined that I am becoming closer and closer to success. By now people begin honking the horn, which for the record is never encouraging but startling and often a set back.

6. I push the accessibility HELP button because I realize how intense the situation is becoming. After ten failed attempts I also am feeling hopeless. I also know, however, the HELP button is just as hopeless. But desperate times call for desperate measures.

7. “You push the button and just grab the ticket.” This is the help I receive from pushing the HELP button. I must respond even though I want to reach through the machine and choke the person on the other side.

8. “Yeah, I’ve got that part. My hands just don’t work and I cant grab the ticket. Thats the problem.”

9. Silence. I must wait while the person on the other end is trying to figure out why and how I’m driving if my hands don’t work.

10. I look in the rear view mirror and see a line forming. So badly I want to bust through the flimsy little yellow wood gate.

11. “Did you push the button?” the voice from the box finally announces. The silence is broken. And it’s clear the person on the other end thinks I’m mentally disabled not physically disabled.

And then like a ‘Choose Your Adventure Sci-Fi Novel’ one of the following things happen to end this nightmare, but only after steps 1-11 have been executed first.

12. I fucking do it by myself! It may have taken fifty attempts but alas I somehow moved the ticket in just the right way
so that it stays out of the machine. Then I use one hand to smash it against the machine until I cant get my other hand out there for extra support. Carefully I pull it back into my window, praying the ticket doesn’t fall in between the machine and my window. When it lands on my lap I weep tears of joy.

13. The person behind me walks up and offers a hand. Once a really handsome dude in his mid-twenties, a total California surfer boy, surprised me at my window. It took him a whole second to grab the ticket and give it to me, which was totally embarrassing. His charm and overall easy-goingness made me go all googily and offer this bad joke. “Crazy how I can drive this big ole van but not grab a stupid parking ticket, huh?” I’d like to say it ended there but it didn’t. I was more embarrassed when he had to come back a second time to help me put on my chest strap. It was cold outside and I had so many layers of clothing on, including one fat jacket, I couldn’t re-do the chest strap under all the pressure. Again, I fumbled for things to say, like “I hope I never see you again” and “Don’t get crazy, I’m a married lady!” Get it, the chest strap obviously goes across my chest. Yeah, it was bad. I wanted to die.

14. Miraculously, the yellow gate has lifted all by itself. It’s rare when this god send happens but when it does the relief is so intense, I blow through the gate without thought to how I will exit without paying dearly. I also don’t care.

15. The voice from the box appears in person claiming to rescue, but really I think more to see how I’m driving with my so-called no hand function. The slow waddle from the security station takes minutes by itself so in order to speed up the scene and make it even more awkward, I usually call out sadly, “Yeah, I’m so sorry you had to come out but I’m in a wheelchair.” For my acting efforts, I am awarded into the garage with apologies for days.

And then there’s the times I actually make it into the garage only to drop my ticket on the van floor, either before trying to get it validated or just before paying to exit. That also becomes a fun task of finding some kind stranger to help. And since these strangers actually have to enter my van, I then have to explain how it all works, how I drive, and then my life story and the definitions of quadriplegia, and then what my religious beliefs might be and so on. That’s why I only use parking garages when there are no other options, or when I have a helping co-pilot. It’s just too much work, too much explaining, and too much emotional distress to simply find a parking spot, especially when the garage demands payment for this torture. I guess I could also not drive at all. Fuck me.

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Feel good about yourself. Read more of my ridiculous problems. It’s fun.
99 Problems #1 Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.

 

 

 

 


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99 Problems — #5 I once offended a woman with Lupus.

LupusWhen my best friend committed to starting her non-profit, a creative reading and writing endeavor dedicated to inner city kids, she also committed us to attending as many charity events as possible. Kind of like of method acting, we threw ourselves into the Orlando philanthropic endeavor circle in order to learn the process of raising money and creating brand awareness. We attended fundraising Happy Hours and dressy Galas. We sat in on local board meetings and attended every public event to familiarize ourselves with Orlando’s leaders. We researched other charities, and compared our goals to their realities. And finally when it came time to launch her philanthropic endeavor–even if I do say so myself–we actually appeared to know what we were doing. People listened. And the charity took Orlando’s streets with great success. Now, five years later, Page 15 has served over 850 students and continues to grow and thrive with each new school year.

There was this one time during our charity tutorial, however, that I made the ultimate philanthropic faux pas. It started when former Miami Dolphin football player Nick Buoniconti, who manages his brothers spinal cord injury endeavor The Buoniconti Foundation, invited us to a happy hour for a Lupus fundraiser. Without hesitation Julia and I agreed because we wanted to get in good with Nick (he has a very high reputation for donations and philanthropic endeavors), but also, and like I mentioned before, we were curious to see how different charities raised funds. So we showed up to Rhythm & Flow, a bar we would never go to otherwise, and paid our $10 to get in the door. Besides the door monies, we were told, a portion of the alcohol drink purchases were also supposed to go towards the Lupus charity ‘TO FIND THE CURE.’ So Julia and I quickly bellied up to the bar and each bought ourselves a vodka cocktail. Yes we wanted to do our part for Lupus but also we needed some social lubrication to deal with people in attendance, which appeared to be mostly middle-aged divorce attorneys.

It was early still. So Julia and I explored every inch of the small bar, searching for free apps, Lupus Literature and other people like, well, us. The tour proved to be unsuccessful. Including a bathroom break and a mirror check, the bar tour only killed ten minutes. This clearly was one of the more casual events, and that was okay with us. Because seeing what we didn’t want to do was still part of the learning experience.

By our third vodka we were sitting in a circle of strangers chatting away about Julia’s upcoming project and foundation, when I felt a tap, tap, tap on my knee. The bar had filled since our first vodka, and now there was a decent amount of people standing all around us. I looked down to my knee to see what or who was down there, and squatting next to my wheelchair was a younger woman with freckles and brown curly hair. She signaled me to her. So I leaned in.

“Hi,” I said, cheerfully. “Do you need to get through or something?” I’m used to people tapping me to move my wheelchair.

“No,” she replied. And then she paused for a long time, tilted her head, and stared into my eyes in an endearing way, almost like she was my mother. I was ready to sit back up, look away and break the awkwardness that was started to work its way around us, when she finally spoke up.

“I just want to say that I’m so glad you’re here. You’re much braver than me. I have Lupus too.”

“What!” I yelled back like the immature twenty-something I was, with vodka dribbling from my chin and all. “I don’t have Lupus! I’m just paralyzed.”

Upon hearing my god-awful response the girls face immediately flattened and she disappeared back into the crowd as quickly as she had appeared before me. I hoped–no prayed–no one else heard our conversation but the scuffle was enough to make Julia turn to me and inquire about the situation.

“Oh my god. What did you say?” she asked.

“I told her no I don’t have lupus… but it wasn’t pretty.”

“What? Why? What do you mean it wasn’t pretty? What did you say?”

“Well I cringed my face like she had some contagious disease, without even meaning too. And then I said, ‘I’m just paralyzed,’ like my disability is so much more respected than hers. I feel like an ass. I don’t even know that much about Lupus. Do Lupus people need wheelchairs?”

Julia couldn’t say much. She was too busy laughing at me.

“Should I go find her and apologize? God, I feel like such a dick. Here I was trying to support people with Lupus and now I’m pretty sure I just insulted one terribly.”

Eventually, Julia collected herself.

“I don’t know girl. I don’t know the ethics on this one. I mean, she shouldn’t have assumed you had Lupus. So you shouldn’t feel bad… but… um…”

“I know! I know! I was just caught off guard. And I’m three vodkas in. I mean, Lupus? Really? Jesus.”

“Why don’t we go to the bathroom and then get out of here,” she suggested.

Right then I made a pact with myself that if I saw the girl with Lupus in route to the bathroom or on the way out the door, I would apologize for my outrageous behavior. Unfortunately I never had the opportunity. The woman with Lupus had vanished. So instead I went home and googled Lupus and spent some time reading and researching about the disease. I wanted to know why that girl felt so proud of me, and what her daily grind was like. Surely her disability was just as difficult as mine, if not worse. I felt sad for her. And then felt sadder for myself because it occurred to me this is how some people probably feel about me.

The next morning I told Julia, “No more Lupus Happy Hours.”

Like a best friend would, she agreed.

To learn more about Julia’s initiative Page 15 visit  page15.org.
To learn more about Lupus (like I had to) visit lupus.org.

◊ ◊ ◊

There’s plenty more problems to go around. I promise.
99 Problems #1 Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers


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99 Problems — #4 Strangers touch me.

StrangersTouchMeOne Saturday morning on a downtown Los Angeles walking tour, a grey-haired man in a grey pin-striped suit touched me as he passed by. Technically, it was more of a shoulder grab followed by a question.

“How are you doing today?”

The exchange happened fast, the grab unexpected. I would have thought it a figment of my imagination if it weren’t for the confused look on my husband’s face when I looked up at him directly afterwards. Still, after three years together the random stranger touching comes as a surprise. But not to me. After 14-years of being in a wheelchair it’s something I’ve become accustomed to. For some reason strangers have an innate urge to touch me, like hands to a pregnant belly. And most of the time they want nothing in return.

During this particular stranger encounter, the man didn’t wait for a reply to his question. He simply squeezed, smiled, made his statement and then continued strutting passed our tour group, all fifteen of us, cheerfully swinging his brown leather briefcase. That’s right, he was the kind of guy that carried a briefcase on a Saturday morning.

Other encounters of the stranger kind include a homeless woman praying for me in the middle of the street, a man resting his hand on my shoulder while waiting to use the crosswalk, and also a fifteen minute conversation in the grocery store aisle while trying to buy pasta, hand on shoulder–and it doesn’t stop there. No matter where I go it seems, someone, somewhere, is waiting to touch me. And instead of trying to make sense of it, I’ve learned to simply play along. I mean, it could be worse. I could be untouchable, a real life sitting monster people fear to touch. And as far as I’m concerned, that seems much more emotionally damaging in the long run.

So for now I take my stranger touches in stride. And then secretly put them in my stranger categories, which go something like this:

The Touchy Offenders:

Petters. No adult should ever touch the top of another’s head, ever. But a Petter will, and he or she will do so with pride and dignity as if loving on an animal. In extreme cases, Petters even goes as far as to stroke the hair, which is totally creepy and completely unacceptable.

Do-GoodersPrayers. Oh Prayers. They mean well but walking up to a disabled person in public and asking for his/her hand for in prayer implicates one of two things: “You look sad.” Or “My life is better than yours.” So yes, this can be an awkward situation (especially on a first date). Instead of denying prayer service, because this surely will cause confusion and create quite the scene, I oblige and then say my own little prayer later. I ask the universe to help people become less judgmental.

Kids. What’s there to say? Kids are kids. Babies and toddlers violate everyones personal space, so I don’t particularly consider myself special for having this category. Although in my case, the touching doesn’t happen to me directly but more the joystick atop of my wheelchair. It’s inevitable. Any human under 8-years-old will attempt to grab it at some point in passing. So when in any room of children, or even say shopping at Target, it’s important I be on guard at all times. A child will never be blamed for running him or herself over, even if he or she is at fault. Spoiled little rug rats.

Do-Gooders. Like Prayers, Do-Gooders have good intentions. However, recalling motivational quotes aloud, tilting the head and rubbing my back upon a first encounter comes across as, well, condescending. And while Kids put up a good physical game, the Do-Gooders are emotionally exhausting. They will inquire and chat about my injury, or the injury of a friend, or even a friend of a friend, for hours, forgetting or completely unaware that I’ve been dealing with my injury for a very long time. And that’s because in their eyes they’re processing the adversity as if it was Day 1.

Trippers. These oblivious pedestrians trip or fall (on top, in front, or behind) me depending on what part of my wheelchair they snagged in passing. Embarrassed, they usually casually collect themselves, laugh it off, and then spend the next few seconds apologizing while looking around aimlessly, as if assuring everyone the social faux-pas wasn’t their fault. Although, I like to make sure everyone knows it was the Trippers fault regardless if it was or not. If we’re going to play this game, let’s really cause a scene!

efGropers. Ironic to the name, Gropers are the most harmless of the offenders but still considered like the extreme sports people of touching. They either over-touch in conversations in attempt to hide their uncomfortableness of adversity AND/OR over-touch to prove their openness for diversity. They also may reach out to touch for their own sake, just to take a little self-evaluation of their humanity level. ie. The I-did-something-nice-today test.

Eye Fuckers. These people don’t have to touch physically because their acute stares are equivalent–or actually even more violating–than any other touching offense. The intensity of an EF’s stare can even make a one-eyed unicorn feel uncomfortable. So at all costs I try to avoid eye contact with Eye Fuckers, or at the very least imagine that they’re simply admiring my outfit. In reality, however, I know they are probably trying to figure out what is wrong with me and if it’s contagious. So that’s fun and always something to look forward to.

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You want more problems. You know you do.
99 Problems #1 Attack of the Flying Pens
99 Problems #2 My Kitty Has Super Powers
99 Problems #3 Los Angeles Sidewalks Are Cracked Out
99 Problems #4 Strangers Touch Me
99 Problems #5 I Once Offended a Woman With Lupus.
99 Problems #6 I Hate Parking Garage Ticket Dispensers