Reinforcing My Fear and Hatred of Death

Reinforcing My Fear and Hatred of Death

*Please note that I wrote this descriptive piece about my Great Grandmother for a college writing course. That said, all the feelings are 100% real and one of my biggest fears is the fear of death. If I did not love her as much as I do, I never would have done the things that follow.*

               The shock that rippled through my body when we got to the hospital was unlike anything I’d ever felt before. The car ride there had been silent. When my dad and I went into the hospital, the fluorescent lights made my head hurt and I longed for the darkness of night. I recall being shown a small room with four white walls and two small couches with a green background and flowers. The room tried to look cheerful and bright, but it was a holding cell for loved ones. All of a sudden, I saw my mom. Seeing the dried tearstains on her cheeks made me start crying all over again.

               Her comforting arms wrapped me in a big, warm hug.  We didn’t care that our shirts were getting wet from tears, we just hugged each other and did our best to calm down. After a short time, my mom took my hand and led me out into the hallway. I kept hoping that it was all a joke and that when we got to my Great Nana’s room, she’d be sitting up in bed, laughing at me. Before she opened the door, my mom knelt down, stared me in the eye, and asked me one last time if I was sure I wanted to see her. Slowly, feeling like I had no control of my body or mind, I nodded my head and took her hand again.

               Mom knocked on the door and my grandmother opened it slowly. She gave my mother a strange look, almost as though she was not expecting to see me there. As we walked in, I couldn’t believe my eyes. The woman who I thought was indestructible was lying there, still and pale.  She was white as a piece of paper and looked so thin. I hadn’t seen her in weeks. She was my role model and she was just ripped away from me. At 93 years old, a silly car ride had stopped the unstoppable woman. Her heart gave out, and she was gone. Just a few weeks before, she had been walking around and acted as young and as jovial as an 18 year old. Now, she was lying there, cold.

               She had always been cold. Everywhere we went, she brought three sweaters with her. This cold was different. My grandmother took my hand and touched it to her cheek. I recoiled in shock. The warmth had left my great grandmother’s body and all at once it left my heart. I was surrounded by people, but I was alone. 

I Will Always Love You!

My Obsession With Languages

My Strange Obsession:

Languages

Communicating has always been difficult for me. To see me briefly, one would never have guessed. I talk a mile a minute... but I rarely know whether I am saying the correct thing or being properly understood. In fact, part of the reason I talk so much is that I attempt to clarify what I say in 3 or 4 different ways to prevent misunderstandings before they occur. 

I used to think that if I had something to say, I was a part of the group. Vice versa, if I didn't have something to contribute to the conversation, I felt left out. My mom tried for years to break me of this thought process, but to no avail. I continued to talk and my peers continued to be annoyed... and I continued to hold on to the hope that my peers were becoming my friends.

From the time I was little, languages always fascinated me. I guess that a part of me thought that if I learned enough different modes of communication, people would finally understand what I was trying to say. It sounds so silly now, but I was desperate... and I was good at picking up languages. 

Beginning as a very young child, I learned Hebrew. Growing up going to Junior Congregation and Hebrew School, I was a very dedicated student and loved learning prayers, songs, and the like. At my Bat Mitzvah, thanks in large part to my brother's great influence, I led more of the service than any of my peers had. After my Bat Mitzvah (great amounts of credit due to ALL of my Hebrew School teachers), I was the only one in my year to complete the final year of Hebrew School. I chose to study conversational Hebrew. 

Hebrew was never a language I would have used to express myself, but it was a special language between myself and my G-d. It enabled me to communicate with Him and still does to this day. A large part of my inner strength comes from these communications. 

My grandparents and great grandparents spoke Yiddish (the historical language of the Ashkenazi Jews). Obviously, they also spoke English, but as a young child I was particularly intrigued. Yiddish was their secret language. They couldn't spell around me because I was a good speller, so they would switch into Yiddish when they wanted to talk about something without my hearing. 

Now, Yiddish phrases are some of the MOST fun words to say... and as I got older, I learned the only cuss words I EVER say from my Great Grandmother. Below is a short list of some of my favorite Yiddish terms (both cuss and non-cuss).

Mensch: a person of character

Plotz: to burst or explode

Fercockt: all F**ked up

Nudnik: a pest or an annoying person

Meshuggina: crazy

Shvitz: sweat

Ver Clempt: all choked up

Ich Hob Dir!: to hell with you!**

**literally translates to I have you in the bathtub.** One of my Great Grandmother's favorite phrases when idiots would call her repeatedly looking for the same wrong number.

Now clearly I never reached conversational level in Yiddish. It remained their secret language, but I took pleasure in sharing in the little secrets that they chose to share with me. 

My best foreign language has always been Spanish. I speak Castilian Spanish (from Spain) and began learning Spanish in the 6th grade. By the end of 7th grade, I had read the first two Harry Potter books in Spanish and I enjoyed setting my television to Spanish or to HBO Latino to absorb more of the language in my everyday environment. By senior year of high school, I was relatively fluent and I missed testing out of a language in college by less than 5 points. 

My college semester of Spanish was strange. No one else in my class was as fluent as I was and the assignments mimicked those of my senior year Spanish class (to the point that I was simply editing some of the projects before passing them in). My professor wanted me to minor in Spanish, but I already spoke the language AND I already had both a major and a minor. I finished out the semester having written a three page paper about teenage pregnancy (in Spanish of course) and moved on to the rest of my classes.

When I got out of college, I took a job as an SLPA, first in an area right outside of Boston and then in an area in Texas. One of my biggest selling points was that I was bilingual (Spanish-English). Well, in Boston, that was fine... but when I got to Texas, I was introduced to Tex-Mex and found that I was completely out of my element! A year and a half after moving to Texas, I am able to complete a sale at my electronics store in Spanish, but the Tex-Mex is still over my head. This has been the one and only time a language has just seemed impossible to me.

My favorite language is American Sign Language. ASL is like a dance of the fingers. It's a beautiful fluid language which subliminally helped me to better understand facial expressions and emotions, due to its heavy reliance on facials. ASL is my favorite alternate mode of communication because it doesn't require talking. It's so much harder to be misunderstood in sign language... yet, if your hand orientation is slightly off... DISASTER!

I love the beauty of ASL. It's so complex and yet so simple. ASL can be used for so many things and it is actually often used in therapy for or classrooms with students with Autism. I love seeing music come alive with Signed Exact English (SEE) and ASL interpretation. I was honored to spend several days with interpreters at Disney, seeing the shows through completely different eyes. ASL is the closest I've ever come to my initial goal; using different modes of communication so people would understand me. 

Invisible No More

As someone who went to school for "Disabilities Studies", I have a unique view of the "Invisible Disabilities" situation. On the one hand, people with visible disabilities often say that they just want to be treated normally and that they don't want to be babied or taken care of. I can understand that. On the other hand, having an invisible disability is horribly lonesome and leads to massive misunderstandings and hurt feelings.

Recently, I took a trip home for my brother's wedding. I arranged for my disabilities assistance with the airline several weeks in advance. I was supposed to have an escort at each airport and the airline staff was supposed to be aware of my "situation". Although I'm very intelligent, I am easily overwhelmed by airports. I am an anxious flier, so I have to take anxiety medication before a trip, making me slightly out of it to begin with. Add to that the massive amount of people, the confusion, the noise... it's all too much. (I need assistance at security because I can't stand being touched, but there's not always a way around that.) Every time I've flown in the past, my mom has made my accommodations and they've always been executed well. Unfortunately, the one time I handled my own accommodations, everything became disastrous.

Other than my anxious movements and my headphones to block out the excessive noise, I appear normal. When I got off my first flight, I met the escorts as planned. As always, I told them I would walk so that they didn't have to push me in a wheelchair for no good reason. That's when things first went wrong. The escort didn't seem to understand that I was in his charge. He was supposed to take me from one gate to the other. Instead, he told me what gate to go to and tried to leave me in the middle of the airport.

I realized what was happening and tried to stop him. I explained for the upteenth time that I was supposed to have an escort TO MY GATE and he began muttering "this is terrible" over and over again. I kept asking "what's terrible?" getting more and more concerned each time he ignored me. I was afraid that I was going to miss my flight or that I'd already missed it... but he wouldn't answer me. He had no issue conversing with the two ladies that were with us (a woman in a wheelchair and her friend who was not) but he continued to ignore me, except to mutter an occasional "This is terrible". When we got into an elevator, he finally responded. He said "what's terrible is you are an adult and you should be able to get to your own gate!"

I was embarrassed and I was livid. With tears in my eyes I explained that I have Aspergers. He didn't care. The women with us stood up for me, explaining that I needed assistance navigating the airport... HE APOLOGIZED TO THEM! Finally, the ambulatory woman said that she would take her friend the rest of the way and told him just to get me to my gate. We boarded a tram and he was still muttering to himself! I couldn't believe how intolerant he was being!

Finally I stood up for myself; something that is very difficult for me to do. I told him that not everyone has a disability that is visible and that if someone is on his list of people he's supposed to assist, there's a reason for it. I went through two separate discussions with two separate airline representatives before my disability status was set. If I had truly wanted to take advantage of something, I would have ridden in a wheelchair rather than walking. After all, WHAT COULD I POSSIBLY GAIN BY HAVING A HOSTILE MAN ACCOMPANY ME TO MY GATE? After attempting to reason with him, he STILL didn't get it! He said "I'm doing what you want me to do. What more do you want?!" I replied that if he still didn't understand, he never would.

I was silent for the duration. He was rude and ignorant to the end. After he finally left, I asked the woman behind the desk whom to contact with a complaint about my treatment. She was shocked by my story. The staff the rest of the way was fantastic, but I was still miserable. I finally reached the airport near my home and immediately called the number I was given.

On the way back, I was seated next to a man who spent the five or six hour flight playing with his own naked feet. I was disgusted and kept moving farther away and blocking his feet from my view, but he wouldn't stop. The flight crew knew about my Aspergers and could see my discomfort, but they didn't intervene. I couldn't say anything to him... I was stuck on a plane right next to him and between him and his family for the rest of the flight. It was hell! Upon reaching the same airport where I encountered the hostility and ignorance, I was stunned to find that there were too many people needing assistance for the number of escorts they provided. A man in a wheelchair ultimately decided to wheel himself to his destination. The escort with me attempted to "call a cart" probably 10 times, to no avail. We finally ended up running to my gate. I made it onboard the plane as they were about to close the gate (so much for my priority boarding) and was so anxious from the possibility of having to take a different flight that my breathing did not fully return to normal until I was back home in my apartment.

The airline promised to "re-educate" their employees. I don't know whether or not it was just to placate me. I'm hoping it wasn't because I don't want anyone else to have a similar experience. They also offered a travel voucher, which I grudgingly accepted... only because they are the only airline which flies out of my local airport.

Don't get me wrong. I'm NOT saying I would rather have a physical or visible disability. What I am saying is that having an invisible disability can be a real pain! I hate hearing "but there's nothing wrong with you" or  "you look normal to me". WHAT DOES NORMAL LOOK LIKE? Does my brain look normal? Does anyone look normal. What is normal? I just wish that people were better educated.

Tonight I sign off with the promotion of an amazing organization: http://invisibledisabilities.org/

The Fault In My Heart

The Fault In My Heart

Growing up, there were a lot of times that I didn't understand my emotions. I would say something innocent to my mom and immediately she would ask what was wrong. When I claimed nothing, she argued, saying that my tone told her differently. 

I never intentionally lied about my emotions; I just didn't understand them. That's part of the reason I was misdiagnosed with several different mood disorders. I would be happy for no reason, crying without knowing why, anxious over not knowing what I was anxious about... I could never just know where my feelings were coming from.

Over time, this went from a mere annoyance to a new source of pain for me. I felt like I was going crazy. I had mood swings that I couldn't explain and worst of all, I didn't always even know what my mood was. 

So I started doing something that seemed so brilliant at the time, but makes me feel stupid every time I do it. I started trying to create reasons for my emotions. 

On an emotional day, I'll lay in bed in my pajamas and watch a depressing movie; A Fault In Our Stars or A Time For Dancing for instance, so I can blame my depression on missing Carol or RJ (or just the beast that is cancer in general). If cancer isn't the special of the day, I'll watch pretty much any Lifetime movie, knowing at least I'll have an excuse for my tears. Do the actual reasons behind my emotions lead me towards the various categories of movies? It's very possible but I may never know. 

If I'm feeling anxious (and I have the free time) I'll choose a book to read. Sounds like a good idea, but my book choices tell another story. I'll grab My Sister's Keeper (a choice typically reserved for medical related anxieties) or Lucky (a choice reserved for emotionally related anxieties). I'll grab The Jaycee Dugard Story to show myself how lucky I am to have lived the life I lived. I'll grab a Monk book to show myself that in comparison to the fictional Adrian Monk, my obsessions and quirks are NOTHING! Again, this may seem harmless but after each bout of "coping" I realize just how ridiculous it all is. 

So why open the floodgates and allow the emotional movies and books in? In a way they make me feel normal. I can explain why I'm crying if a character has just died a similar death to someone I loved. Unfortunately, this is a band-aid, and a poor band-aid at that. At some point, I have to learn how to understand the causes of my emotions. I can't keep "creating" reasons for how I'm feeling. By doing what I'm doing, all I'm doing is failing to deal with the true problems. 

...That's the fault in my heart. 

A Shock To The System

A Shock To The System

If you know anyone with Aspergers (or have read my blog), you know how essential routine can be. I've said it before and I'll say it again: if someone interrupts my routine, I'm completely thrown for a loop! Well, after a year, it's finally happened. My daily routine has been disrupted. 

I've been working the same shifts at each job for over a full year. Always morning shifts at my electronics store and always night shifts at the pizzeria. I can perform all opening tasks at my store without even thinking. 

In May, I took on a full-time position at my store. Since then, my routine had remained intact. I had worked out this schedule when I first began both jobs a year earlier, and no one expected things to change right away. 

I expected change to come, but assumed that it would would be spoken about at length and would be gradual... it was not. One day, I looked at my schedule and I was scheduled to work two closing shifts. After discussing things with management, I agreed to the change, but didn't think about how it would effect my routine. 

I love both my jobs and will do anything I need to in order to keep everyone happy. I never thought there would be an issue with my routine. The change seemed minor enough; getting home earlier at night and not having to wake up as early. The problem, I've discovered, was that in getting home earlier, I was able to get sidetracked and obsessed with random internet research. The hours of being on the internet kept me up later at night, leading to me sleeping later in the mornings. I started being less productive during the day, more tired, and last night, I slept through my blogging (when I woke up at 4am, it was not the time). I know I'll get used to it, but until then, my system is in quite a shock.

So I may have to rely on coping mechanisms. I've had people suggest using a timer when I go onto the internet so that I don't get carried away with random research. I've discovered two inherent problems with that. The first is that I turn the timer off and keep going. The second is that I never know what is going to stick in my brain as an obsession and cause a three or four hour marathon of research. 

So now I turn to you readers: please leave coping mechanisms in the comments section. I will be forever grateful! 

My Inspirations

My Inspirations

I've never been any good at making decisions. One of my friends and I used to literally spend an hour on the phone discussing what movie we wanted to see only to change our minds at the ticket window. I would always start to stand up for myself only to mumble "never mind" when asked to repeat myself. I would start each dance year off with at least 10 different options for a solo song and would always have a difficult time choosing my solo costume. Simply put... Decision making... NOT MY THING.

I never had a consistent idea of what I wanted to do with my life. I wanted to do it all. Starting when I was just four years of age, I had a list a mile long of things I was going to accomplish. I wanted to be "a mommy, doctor, dentist, veterinarian for only horses and guinea pigs, lawyer, dance teacher, coach of the Buffalo Bills..." the list grew every day. Some jobs were added as an attempt to strengthen a bond between myself and various particular family members; but most just fit in with my ultimate goal of changing the world.

It has always been my dream to change the world. I know that sounds like a beauty queen response, but it’s true. As I proceeded through life, I dedicated as much of my time to community service projects and volunteer positions as I could. I have volunteered at nursing homes and assisted living facilities, a local bookstore that was unable to pay its employees, various hospitals, and for organizations such as The American Cancer Society and The Polycystic Kidney Foundation.

That was one decision that was easy to make. I've always wanted to help; always wanted to be involved; to make a difference. I've had numerous role models, too many to name here (although each occupies a special place in my heart) to help inspire me along my way. People who were (and are) major influences in my life and affected the lives of everyone they met.

People like Don: a man who took me under his wing at a very young age. A man who risked his life to save a cat that was stuck in a tree. A man who got out of his wheelchair to dance with his wife at his surprise birthday party-making his own surprise the best (and most emotional) of the night. A man who made my night by sitting with ME at his party instead of his adult friends or family members. A man who lives on in our hearts and in every prop he ever made for the dance studio. 

People like Ellen: a teacher at my middle school who took me under her wing on the first day of school (even though I wasn't her student) because she could tell I was nervous and uncomfortable. In a vain attempt at being popular, I played the other kids game of "ignore the teacher" for a few weeks, but soon I didn't care what anyone else thought of me. She welcomed me to school each and every morning with a smile and a truly heartfelt "how are you?" I always knew that she really wanted to know; she wasn't just making small talk. She always tried to help me fix my problems, no matter how big or how trivial. She attended my Bat Mitzvah, became a close family and personal friend, and when my best friend and walking buddy moved away, she became my breakfast buddy every morning before school. We became our own little family and she became my "Nana". She was truly a remarkable teacher; she cared more for her students outside of the classroom than she did inside. We weren't just her students; we were each individuals whom she believed could do anything. We are and will always be her legacy. 

People like Dr. Marcus: my Jewish mentor. When I was little and attended (and helped lead) Shabbat services alone or with my older brother, during Kiddush, Dr. Marcus would always take me aside and introduce me to everyone he knew. He would beam like a proud father as he told his friends of my many accomplishments and about my love for Judaism (a large part of which he gave me). He made sure that I was never left out of a single Kiddush (a tall task considering I didn't really fit in with the other congregants). He not only made a personal impact on my life in the ways that I've previously spoken of; but he also made sure that I (and everyone around) knew how special I was. He wore many hats, among them: mentor, teacher, friend, husband, and son. I don't think that there's a single person he met that he didn't make smile. He has certainly affected the lives of many people, all different ages and generations. Dr. Marcus had the wisdom of a 500 year old and the heart of an 18 year old. He lived every day to its fullest and always remembered to 'think young.' He was also a very determined man. I watched him go through years of physical therapy. As a student of his, I was sure that he'd succeed so we made a deal that when he was better, we'd go dancing. We never made it, but I know that we will meet again and dance one day in heaven.

People like Carol: my "other mother". When I went to college, my mom made sure that I wouldn't be alone in an emergency. One of her close friends from work, Carol, lived and worked near my school and had offered to be my lifeline. I was skeptical and against it until the first time I needed her. Carol dropped everything she was doing to meet me at the hospital when I was sick. She stayed with me ALL NIGHT until my mom arrived even though she had to work in the morning. She went above and beyond the call of duty and became my other mother that very night. She was someone who was there through the good and bad. Someone who had absolutely NO obligation to me but loved me anyways. Her love and strength inspires me. Carol was diagnosed with cancer and never skipped a beat. She worked almost until the end, keeping the seriousness of her situation a secret so that no one would be burdened by her impending passing. I wish we had known so we could have supported her, helped her carry the burden, and said our goodbyes; but she was a strong and steadfast woman and she lived her life exactly as she wanted to. She was and will always be a huge inspiration to me, an amazing role model, and my proof that I could be close to someone that I wasn't related to and hadn't known since I was a young child.

There are so many more inspirational people in my life, but these four are each particularly special in their own ways. If I described them properly, it should come as no surprise that each of them inspired me to be an even better person and that if I can effect the lives of even half as many people as they have, I'll consider myself extremely successful in my goal to change the world.

Independence Day

Independence Day

Independence is such a difficult thing to obtain when you're an Aspie. Sure, one could say I celebrated my independence today by working both my jobs in order to enable myself to pay MY OWN bills.

The truth is, I don't know if I will ever truly be independent. I do live on my own but even that took a lot of work! I had to demonstrate my readiness. My four years of living at college meant nothing. I had to prove myself again from scratch.

I know my family only meant well, but I moved out on my own (half-way across the country) fully knowing that there were people expecting me to fail. For someone with low self-esteem like myself, that put a HUGE weight on my shoulders. I didn't want to let anyone down and I wanted to prove to everyone that I could make it on my own.

My ability to make it on my own was put to the test shortly after my arrival in Texas when I lost the job I'd moved my life to take. The day I lost my job, I cried and broke down... and by that night, I was already applying for new jobs. For a long time after I lost my job, I hid. It didn't matter to me that I'd gotten three jobs to replace the one I'd lost or that I was doing something that required so much strength that I never had shown before... I was too afraid of being seen as a failure.

But I'm not a failure. Everything in life happens for a reason. Losing my job led me to personal growth. Personal growth led me to creating this blog. This blog is continuing my personal growth each and every day. I am doing things I never imagined I would do. I am approaching strangers at work and starting conversations with them. I am receiving wonderful comments from my customers regarding their experience with me as their saleswoman. I found a way to stay here in Texas and am making things work for myself.

That said, even though I live half-way across the country, I am not entirely independent. I rely heavily on my family. Some is monetary but most is emotional or supportive. When I'm having a panic attack, no one can calm me down like my mom. Any time I need to send an important communication, I always run it by my mom and dad first to make sure it's clear, polite, and proper. I've run my resume and mock interview responses by my brother so many times, he could probably go on a job interview for me. My grandparents are there for me whenever I call, no matter how late at night, and will stay on the phone with me for as long as I need them. 

...and my family does all of this without complaining or expecting anything in return. 

So today we celebrate independence. With Aspergers, celebrations come with "smaller" achievements. I'm not fully independent and that's okay. Today I embrace and celebrate the independence I have and I thank my lucky stars that I have such an incredible family to depend on.