Reversing the Mirror: Who Am I?

Keep in mind these are my own opinions, based on my experiences, and aren’t necessarily indicative of everyone with a disability.

Last week I revealed more about myself, namely that I was born with spina bifida. Living with a disability from birth means a tricky dance between self acceptance and seeing what the world sees. You also run into 3 categories of people: 1. The Pitiers–those that look at you in a wheelchair and go out of their way to tell you they are sorry you are disabled, 2. The Prayers–these well-meaning people are those that, in public, seek you out and feel the need to “pray away” the disability, and 3. The Acceptors–this group most commonly includes your own family. They accept that you have a disability, and take you how you are. They don’t try to change the outside appearance. It’s important to point out that all of these groups of people are well-intentioned in their behavior towards those with disabilities. Today, I want to gently and in love, turn the mirror around from myself and look closer at what people in these categories, namely the first two, project onto the person with a disability.

I’ve encountered all of the above mentioned categories of people. As a person of faith, someone who believes that God doesn’t make mistakes, it’s hard to swallow the message you get when people come up to you in public, based on your appearance, and want to pray for you. That message? “You are obviously in severe mental pain because of your disability. Your disability says to me that something is wrong, so let me pray that God fixes your outward appearance and “heals” you of your disability.”  Let me just say that as a person of faith, I do believe that God can heal and fix any situation. That healing doesn’t always look the way we want it to or expect.

Next I want to focus on “The Pitiers”. This unique group of folks will see someone in a wheelchair and think, “Oh wow! I’m so sorry they aren’t able to walk like I can. I don’t think I’d be able to handle being disabled, so therefore, maybe they have a hard time with it too.” Now, to be fair, I think there are two categories of disabled people who pitiers come into contact with. Those that were disabled from birth, and those that became disabled after an accident or illness later in life. Since I am part of the first category, I don’t feel qualified to speak about the thoughts of the latter group.

As someone with a life long disability, here is what you need to know. Being disabled is all I’ve known. Of course I have days when I feel like I want to be someone else, but don’t we all? This doesn’t mean that it’s always been an easy ride. Being born with a disability has had, for me, one drawback. Since it’s all I’ve known and my family accepts me for who I am and has worked hard to treat me exactly like my other non disabled siblings, I began to have the mindset that somehow I was gonna grow out of my disability. Weird, I know. Whenever I’d have a dream at night where I made an appearance, I was not disabled. I was completely able-bodied.

In high school I remember one night I had a thought so profound, it felt as though I was hit with a ton of bricks. The thought that I finally began to understand? “I am disabled. I’ve always been disabled, and there is NOTHING I can do to fix that.” Whoa. Deep stuff. Needless to say, that’s a pretty difficult realization to process. I stayed out of school the next day to give myself a chance to digest things. My parents were super supportive and got me into counseling pronto. Through therapy, I learned I have a chemical imbalance that manifested itself through depression. The realization of my reality served as a smoke signal from my brain, telling me I needed to get help. This imbalance and resulting depression has nothing to do with my disability and I’ve since learned it’s likely genetic. 

I’ve been in therapy often on from that time to the present. I’ve learned to love myself. On the inside and out. To accept myself as I am. My head finally matched the person I was when I’d dream at night. Except that now in my dreams, I saw me. Wheelchair and all.

I hope this encouraged you today. Know that you are not alone and the world needs you in it. 🙂

Cheers!

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LAFF #4: Tales from the Nursing Home

My first job out of college was as a special correspondent at my small town’s newspaper. My beat was profiling senior citizens in the area, telling their stories from their point of view. My job was made easier by the fact that I also volunteered in the laundry room of a nursing home (more on that next week). I was allowed the freedom to pick any subject pertaining to the elderly and then interview the appropriate persons.

One day I decided it’d be fun to figure out who was the oldest resident of our small town and interview them about their life. I called up the nursing home and found the name of a woman they claimed was the oldest living person currently residing there. She was 102 years young.

I called her nurse on the floor where she lived and set up a meeting. I was told she was hard of hearing, so I’d need to speak loudly and make sure she could hear me. I set about typing up questions for her–who was your favorite president, what is your favorite invention that debuted in your lifetime, ect….  Because she was hard of hearing–who isn’t at 102 years young?–I decided to make sure if she couldn’t hear the question, she could see it. I enlarged the print of my questions to 30 pt. type. Genius, right?

On the morning of the interview, I arrived on her floor and found her nurse who took me to her room. On the way there, the nurse looked at me and said, “Oh, by the way, did anyone tell you she has macular degeneration and is blind??” The answer to that would be a solid, “nuh huh!” No one in all the pre-interviews I conducted told me this crucial piece of information. I mentally threw out the giant stack of questions I had for my subject. I resolved to just yell my questions. And I did. While my face was about 3 inches away from hers at all times. In journalism, things come up out of the blue and you just have to roll with it. So I rolled. All the way down the hallway in my wheelchair to interview a woman who lived through more presidents than I had.

The interview went well and I went home to listen to the tape. Yes, one thing you learn as a journalist is to always tape your interviews, as well as take notes during said interview in case anything happens to the tape. Another thing that you learn, usually the hard way, is to always ALWAYS check your equipment before interviews to make sure they are running properly or you could lose the precious words of the oldest person you’ve ever met. Yep. Glad I had my notes! I’m also glad after I submitted my piece that my boss asked me to do one more interview–her sister lived down the hallway from her. I was gonna get a chance to redeem myself.

Here is where our tale really takes a turn. On the way to my 2nd interview, the floor nurse warns me that this woman can be a bit abrasive. In her 90’s, she had given up on politeness years before. So we enter the sister’s room and the nurse introduces me then leaves. The sister looks me up and down and then abruptly declares, “I have to go’t the toilet!” Ok, mentally rolling with this. We are both in wheelchairs and the room is small, so I maneuver out-of-the-way to give her room to roll into the bathroom. Now, this specific wing of the nursing home was for folks that needed special supervision and care–and the rooms resembled those of a hospital, complete with freakishly large bathroom doors. My only option to get out of her way was to wheel behind the open bathroom door–which remained partially open. Once settled I got out my materials to ready for our interview when she was done in the bathroom. So it kind of came as a shock when I heard her voice from behind the partially open door declare gruffly, “Ok, now what did you want to ask me??”

At this point, I quietly asked myself, “Seriously, this is happening now?” Ok, continuing to roll with it. I push record and conduct my interview. At this point it should be noted that the bathroom door is still partially open, and I began hearing sounds from said bathroom that should not be heard by ears trying to focus on writing an article that could potentially vie for a Pulitzer. My subject, sensing the sounds coming from her could be heard, managed to plead, “Don’t print this!” She soon finished, came out of the bathroom and we completed the interview, without further awkward incidence.

I always figured I’d be a journalist way longer than a few weeks before I’d experience the preceding scenario. But much like life, things rarely follow a specific course or timeline without at least a minor interruption. The key to getting through these times is to roll with it, wait patiently outside the proverbial bathroom door, and remember to pack extra batteries.

Phew! That was a long one. I hope this story put a smile on your face. I’ll see you back here on Monday!

Remember you are not alone.

Cheers!

Anxiety In the Workplace Part 3: Pop-up Triggers

Good afternoon! I am shakin’ things up today by posting way early and writing on a topic I hadn’t thought of till now. One thing I look forward to on a weekly basis is reading the Dear Prudence column on Slate.com. I’ve enjoyed reading advice columns for as long as I remember, and Dear Prudence is my favorite.

Today, a reader wrote in and asked advice about what to do about a situation at work (I linked his letter above. Click the link and scroll down the page till you see a video). He was recently hired by a place he enjoys, but just discovered there is a bit of travel involved in the job. This was apparently not mentioned during the job interview or his subsequent acceptance of the job. Here is the issue: he has a profound phobia of travel. Flying, driving…ect…, and wanted to know how to address this with his boss. Prudie’s advice was to tell his boss of his phobia, ask for a medical accommodation and say he’d be more than willing to stay behind and keep the office running. 

This letter brought up an issue I believe is not talked about as much as it should be. What do you do if you are in a job interview, but there is some aspect of the job that gives you anxiety?  Obviously, if you have a fear of heights, applying to be a window washer would probably be a bad career choice, but what if on the outside, the job appears ‘safe’?

The last job I had working with kids, on the outside seemed pretty safe, a place I could avoid my biggest anxiety triggers. Until the day the head teacher decided to teach a lesson using balloons that were to be popped.  So, what was I supposed to do? I am forever grateful to the kid that was having confidence issues that day, and was embarrassed that a younger child was able to blow up more balloons than him. He ran out of the room in tears and I followed to ‘talk him down’-translation: Lets really talk this one out because I secretly have no desire to go back into that room. I’ll even give you a long-winded pep talk to increase the chance to not go back in there. Effective? Yes. Shameless? Absolutely. But hey, I didn’t have to go back in there till after the balloons had popped AND the kid had his confidence boosted. That’s a win-win in my book.

So, how do you handle pop up anxiety? I think it’s best to be honest.  In the case of the letter writer, it’s perfectly reasonable to ask to stay behind.  An understanding boss would have no qualms about honoring that request. 

Well kids, that’s all for today. Tomorrow’s LAFF features one adventure in my brief career stint as a journalist.
Remember you are not alone. I’ll see you tomorrow.

Cheers! 🙂

Math, School Anxiety, and American Idol

I’m a sensitive soul. Always have been. The youngest of 3 kids, I can remember yelling at my siblings to stop fighting when they were in the midst of a brawl. This sensitivity extended to other areas of my life. School was an anxiety producer for several reasons. The earliest example of school anxiety came every year in the first week of October. Fire Prevention Week.

One day in 1st grade, our class was having circle time. During this time our teacher would make announcements, we’d recite the day of the week, month and year, and read a book. On this particular day, our teacher mentioned that we’d have a fire drill sometime in the coming week. I had never heard that term before, but I remember feeling a sense of dread. Perhaps it was the word ‘fire’ that made me afraid. For those of you outside the US, Fire Prevention Week is celebrated in schools across the country as a way to educate children on fire safety. The week includes a fire drill so the kids are able to practice what to do in case of a fire.  FPW filled me with such dread that I tried to gauge when the drill would be, then feign sickness that day so I could stay home from school. Yes, it seems silly and extreme to stay home from an entire day of school for an anxiety inducing activity that only took up 5 minutes of time, but I was desperate.

I also had anxiety in another area of school. Yelling teachers. Even if the teacher wasn’t yelling at me, I’d still be on edge when they’d yell at a classmate. Fast forward to 8th grade. There was one specific teacher that gave me anxiety; Mr. C. He was known for being short-tempered, and there was even a story about how he threw a chair during class one day. Needless to say, I was a jumble of nerves in his class. Unfortunately, he was also my math teacher, and I’m about as good at math as William Hung is a singer, without the awkward movements.  As the year wore on, I was spending more and more time in the nurses office on a rubbery cot covered in thin paper, and less and less time in math class. Of course my grade in math suffered greatly. Then my teacher had an idea midway through the year. Every other day going forward, I’d leave class early to be privately tutored in a calm environment by an equally calm tempered tutor. GENIUS! This fix helped my grade just a bit and I ended the year with a passing grade. Phew!

In life you are gonna come up against people different from yourself. They may give you anxiety. The key to coping is to make sure you have others around you that can act as a support system. This can make the difference between a failing or a passing grade.

Remember you are not alone. I’ll see you tomorrow

Cheers!

Biology, Fire and Muppets

Living with anxiety, sometimes your imagination can get the better of you. Especially when you live with daily anxiety, and are disabled (Whoa! You didn’t see that one coming, did you? 😉  ).

Yes, since birth I have lived with spina bifida (SB); one of the most common of birth defects. Occurring in the first trimester of pregnancy–1,500 cases in the US alone each year–SB happens through a failure of the spine to develop properly. During normal development of a fetus, the spine forms in two sections and comes together, much like two sections of a bridge when they come together to enable cars to go across. In a fetus with SB, this process is either, A. disrupted completely, forming a gap in the spine, or B. formed completely, but the spine sticks out of a gap in the spinal column. This can happen anywhere on the spinal column, but the lower the lesion, the better the prognosis, as everything below the lesion site is effected; bowel and bladder function, as well as the ability to walk. If the lesion is higher on the spinal column, the patient can end up paralyzed, unable to walk at all. With the advancement of technology though, there is good news. Surgeons are actually able to go in and repair some SB cases in utero.

Fortunately, my lesion is located at the base of my spine. The opening was closed immediately after birth. I am able to walk, but not for long distances. I rely on a wheelchair for that. I also wear leg braces and use crutches for short distances.

So, how does this tie into anxiety? Oh honey, let me count the ways. I worry about safety on a daily basis. When I was a kid I worried about staying home alone for fear that someone would break in and I’d not be able to get out of the house. Because of this, I wasn’t able to stay alone in the house overnight till I was in…college. Basically because mobility is a challenge for me, my brain is a constant bundle of worrying about the what if’s in case of an emergency and I’m alone.

I also worried about what to do in case of fire. I remember one night I had just seen an episode of Rescue 911 where there was a fire rescue. That night, lying in bed I mulled over what I had just seen and wondered what I’d do. At that exact moment, the smoke detector in our house went off!! (Which answers the age-old question, “If you think it, it’ll happen). Turns out, the alarm didn’t go off because I had thought it to happen, but a few lost carpenter ants made a wrong turn going back to their home and got STUCK in our smoke detector. 😀 Still scared the stuffing out of me.

As I’ve gotten older I’ve realized that, while there are some things I can do to lessen the risks of disaster; walking in pairs after dark, making sure to turn the oven off after use, etc….when it comes down to it, I can’t prevent everything bad from happening. So what is the best solution? That’s easy. I simply LIVE. And appreciate every moment. Now if you’ll excuse me, I need to go appreciate that my husband just gifted me with season 1 of The Muppet Show.

Remember you are not alone. I’ll see you tomorrow!

Cheers!

YouTube, Tiaras and Gum: Coping Strategies Gone Wild

Coping with daily anxiety entails developing coping strategies. Sometimes you have to get creative in the kinds of techniques you use. Case in point, I just had an anxiety inducing phone call, so to calm and bring me back down to feeling better, I’m currently watching makeup tutorials on YouTube. Specifically British makeup Youtubers. There is something about the British accent that I find somehow soothing. This more than likely means that I was British in a previous life. Probably part of the British Royal Family. Which would explain my affection for tiaras. And my insistence that whenever I enter a room, all those in attendance stop what they are doing and stand up. (I may have made that last part up 😀 )

However, there are some coping strategies that I’ve used over the years that can affect another aspect of your health in a bad way. Today I’m going to talk about chewing gum. According to a 2011 study by Wired magazine, chewing gum whilst doing academics improved the performance of participants while those that studied but weren’t chewing gum showed no significant advancement.

The last job I had before moving to my current place, was working at a tutoring company. I began to chew gum to help me focus and stay on track. Since I worked most days of the week, I chewed at least one piece of gum a day. Sugar free of course. I even began chewing gum on days I didn’t work. I started telling my brain that I was burning calories chewing gum, and since it was sugar-free, it was a good habit to keep.

This denial blissfully continued until one day, several years into this seemingly benign habit, my jaw began to hurt and I found it difficult to chew. This peculiar symptom went away after a day or so, but I’ve noticed it comes back every once in a while. Long story short….I gave myself TMJ!

TMJ or; temporomandibular joint dysfunction, is defined by Google as, “pain and compromised movement of the jaw joint and surrounding muscles”. Translation: “Hey lady, you’ve been lying to yourself for years about how gum chewing burns calories and as a result, you’ve given yourself TMJ! Just drop the pack of gum, walk away slowly, and no one will get hurt!”

So in the last few years, living with this new condition, I’ve had to modify my coping strategies. Now, if I’m feeling anxious or need to focus, I grab a cup of coffee, sign into Youtube, sit back and pretend I’m British. Can someone please pass me the Turkish Delight?