Superman and Superwoman

Growing up, I always believed my grandparents were Superman and Superwoman. It was sort of hard not to believe that… since my grandmother had a “fly button” in her car, was eternally 24 years old, and both of my grandparents stayed up way later than anyone else’s. They were also ALWAYS there when anyone needed them, just like superheros.

Since they lived about two blocks away from us, their home was my second home. I stayed over there so often that I called one of the bedrooms “my room” and the last time I was there, I took pictures of every inch of “my room”. I took those pictures because my superheros are moving. They have a new penthouse to call their new “Fortress of [Anything But] Solitude”.

The move came as a huge blow to me. I tried to fake happiness... I tried to pretend it wasn’t happening... I got massively depressed... The works. What I neglected to think about until today when my mother mentioned it was that the house was where my mom and her siblings grew up and while I feel like I grew up there, I didn’t. I have tons of memories and I spent a lot of time there, but it wasn’t my home like it was their home.

So now I’m sitting here in my room (no quotation marks) in my apartment about to embark on the same journey that I did when my parents told me they were selling our house. I am sitting here letting memories wash over me, and hoping that by recording them in this heightened state of emotion, the emotions of the memories will be captured in such a way that I will still feel them even though I can no longer return to where they were made.

Forget being a superhero for a minute; my Grammy would also have made a great private investigator. When I was still in elementary school, I began walking home to her house by myself after my brother and older cousin went on to middle school. I didn’t go there every day, but when I needed to, my Grammy clearly wanted to ensure my safety. The first day I was walking there, I felt like I was being followed. After awhile I caught a glimpse of my Grammy in her car. She was driving as slow as a turtle behind me, making sure I was safe. She did that for the first several times I made the walk alone. I never let her know that I knew she was there, but I always felt better knowing that I wasn’t going to be alone until she felt I was ready. Soon after my Grammy felt I was ready, my friend Jenny and I started walking together when I was going to Grammy’s house, and I think that made both of us feel better.

Then there was the time I decided I wanted to ride my bike to my grandparents house, where I was staying while my parents were away. In the car, it always seemed like such a short ride. My Grammy once again trailed behind me in the car and said nothing when three quarters of the way there, I fell off my bike and asked to get in the car. She helped me load the bike in and that was that. I am so thankful that she was never the type to say “I told you so”.

When I would stay with Grammy and Papa, they stayed up late and Grammy always slept in. Papa on the other hand, used to be a pharmacist. When I was younger, I’d watch as he got himself ready to go to work. I’d be eating my cereal and watching tv and he would sit down on the couch behind me, change the channel, and start to put on his socks and shoes. I’d always give him a hard time about changing the channel on me, but it was our routine and I loved it. I knew that when he was done, we would go out to the car together and he would drive me to school. It was a short drive but I loved every minute I got to spend in the car with my Papa (and I still do).

My cousins and I had wild imaginations. We used to think there was a “snake hole” in the backyard and we would terrify each other by yelling “there’s a snake behind you!” We also had a secret game called “Camp”. The game had to be a secret because we weren’t allowed to be mean to one another but for some reason, I was given the role of the mean counselor… and of course, since I was one of the older grandkids, it would have been my fault for being a bad influence if we were caught… I guess the secret’s out now, but we all turned out okay.

Another rule of “Camp” was that we could only play when at least 4 of the 8 grandchildren were there. Although a seemingly arbitrary rule, it made sense as two lived out of state and two lived over two hours away. Due to this rule, when my little cousins Avery and Jordan and I were alone, we would play a game that had no name. The point of the game was for them to call up a “store” and be rich little girls who wanted very specific things (I have finally realized that a Lou Baton Backpack was meant to be a Louie Vitton Backpack) and my job was to make them laugh… typically by saying “WAZZUP????????????” The game never seemed to get very far, but we always had fun.

One of my favorite things growing up with younger cousins had to have been how we used to get them to take naps. They would go lie down in one of the bedrooms and I would be sent to lie down in Grammy and Papa’s room. Once they were sleeping, I was allowed to turn the tv on really low and just before they were woken up, we’d turn the tv back off. I’m sure the same was done to make me go to sleep when I was younger, but it was a defining moment. For me, it was the moment that I became a “big girl”.

Of course… that “big girl” still slept in the crib sometimes if there were too many people sleeping over at once, but that was because I was tiny NOT because I was a baby!

Being part of a large Jewish family meant lots of holidays with lots of people and we always gathered at Grammy and Papa’s. There were parts about preparation for the holidays that I always loved. I loved crushing corn flakes for the Noodle Kugel. I enjoyed setting the table and LOVED making place cards for everyone. I also liked helping out in the kitchen, although I often tired of it long before the work was done. While I’ve never done well in large groups of people, I always tried with my family. Unfortunately, more often than not I became overwhelmed and had to leave the table, but family has always been my top priority and so I always would return. Another step into being a “big kid” was when we got to move from the picnic bench to a real chair and so I always anxiously awaited that moment. I would put my place card in front of a real chair every time and somehow, I was still relegated to the bench more often than I would care to admit… but even if these memories aren’t the brightest and shiniest, I treasure every holiday and occassion I got to spend with my family, especially now when I spend most, if not all of my holidays alone.  

There is one memory though that stands out so well in my mind and is one that I feel the emotions for even now, even here in Texas, even just as I start to think about it. My Great Nana’s 90th birthday party was an amazing night. It might just have been the happiest I ever got to see her. Her old boss, Michael I think, was able to come and he not only presented her with an award, but he spent the entire night flirting with her. His face was bright red all night long. She was so tickled to have him there. She wore a crown made of tinsel and there was a HUGE  sheet cake with every name anyone called her. The look on her face that night is forever burned into my memory and that is one of my most favorite memories of all.

Let It Go... Not Elsa's Song

“Let it go.” Those words strike terror in my very soul. “Get over it.” That’s something I’ve never been able to do and never foresee myself being able to do. “Just push it out of your mind.” ...Sure, I’ll just try to mute the memories. That shouldn’t be too hard. Just kidding… It’s IMPOSSIBLE!

I have never been able to let things go. As a child it manifested in several ways. The first and most common for children was for me to determine that “so and so hated me” after one incident. I would recall that incident for years to come. It would happen over and over again. That certainly didn’t help my social problems.

The second way it manifested was in my hoarding. I’ve been a hoarder ever since I was a little girl. I kept everything. If my mother came up to help me clean my room, I was miserable because she came in with a trash bag. As a child I wasn’t able to explain, but as an adult, I have a little more understanding. I felt that each item could someday be important. A card may be the last card I ever received from someone; a note that seemingly meant nothing could become a theme for a novel I would write down the road; a piece of clothing that didn’t fit anymore had too many memories in it to let go of. My hoarding has only grown with my age.

The third way it manifested was in my obsession with death. No, I wasn’t one of those people… I am TERRIFIED of death BUT carry those who have passed on with me. I always have. When I was just a little girl, I used to go outside and play with bubbles. I always blew my bubbles towards the sky. Inside each bubble, I’d whisper a wish. It was a wish for my great grandfather and my grandfather to find the bubble and play with it. Those I’d lost were on my mind always… even when I was too young to comprehend what it all meant.

I used to have a nightly routine. I had a glow in the dark tic-tac-toe grid. Each night, I would speak to someone I had lost then I would take the grid and, placing my finger in each space, say goodnight to the eight people I had loved and lost. The center square was reserved for G-d. Interestingly enough, two of the people, my Bubbe and Zayde, were people whom I had never met (but I talked to them anyways). Another one of the people was my neighbor’s husband (I was very close with my neighbor but really didn’t know him at all). When I look at it that way, I realize that I mourned people that I didn’t even know.  

...A hazard of having a big heart I guess…

Looking at my life today, it still revolves around those I’ve lost.

My car and my computer are both named Lil Carol(e) 2. The Lil is for my great grandmother Lillian. The Carole is for my grandmother. The Carol is for my Carol who passed away a year and two days ago.

I have a picture frame in my room (in the shape of a ballerina). It has 6 photos in it. One has both my nana and my papa. Two more contain my nana but my papa is conspicuously missing. The last 3 don’t contain either of them. By the time those were taken, they were both in heaven. I call that frame my “If they could” wish. The other 3 photos are from events that I wish with all my heart they had been able to attend.

In my bed with me are many comfort objects, each tied to a particular person. I have my great nana’s blanket (which I sleep with every night). I also have my Relay for Life blanket (which I have slept with every night since Carol was diagnosed with Cancer). Beside my pillow lies a photo of myself and Carol. The doll my nana gave me, affectionately known as Pink Baby, lies on top of the photo. A square of blanket that my favorite neighbor crocheted for me covers Pink Baby to keep her warm.  Then there are the animals. My sock monkey family had not been complete without a Grammy and a Papa monkey, so I got full sized monkeys for them. They both sleep in the bed with me. Then I have Rosie, the pink orca named after Auntie Rozie. I also have my hospital bear which my parents gave me and my tigger pillow pet which my brother gave me. I also have my white tigger which my uncle whom I almost never get to see got for me on one of his visits.

...and those are just the ones in my bed… the couch is full too!

The thing is, as much as I want for these weights to be lifted off my heart, I will never be able to let go. I strive every day to make my loved ones proud. I strive to be as loving as my Great Nana and as courageous as Carol. I strive to be as big of a role model as Dr. Marcus and as tough as my Nana. I strive to be as romantic as my Papa seemed to have been (I may have read my Nana’s diary 10 or so times…) and as creative as my Great Papa. I strive to be as determined (and Awesome) as my friend RJ. I strive to be as good of a listener as Mrs. Vaughn. Without carrying these people in my heart, I’m afraid I wouldn’t know who I am anymore. I am a conglomeration of them.

I don’t mean to say that I don’t have my own identity. I just know that each had unfinished business to do and that my goals align in some way with each of theirs.

...Not to mention, here I am alone. Now I like being alone, but I like being alone on my own terms… not all the time. I was thinking of getting an emotional support dog or a trained Aspie service dog (trained to calm, read your emotions and react accordingly, and be a constant companion. also trained to be hypersensitive so loud barking etc is decreased), but have been told now’s not the time. I don’t have the money to support a dog and I certainly don’t have the money to pay to train a service dog.

I understand completely why my mom feels that I need to let things go and move on with my life. I hope that someday I can… I know that I am not intentionally ignoring the suggestion. For me, the mere suggestion simply seems impossible.

The Rollercoaster That Was My Trip Home

Part 1: Getting There

For the past several months, I had been getting ready for my trip home. Finally it was almost time to depart. Being me, I had made several lists detailing things I needed to do, things I needed to pack, and things I needed to accomplish before traveling on the 11th. Unfortunately… I am me…

What I mean by that is that common sense was not always on my side. I ran 3 loads of laundry but can only reach the bottom dryer in the laundry room, so I removed what needed to be hung and placed the rest of the laundry in the dryer. At the end of the cycle, most of the clothing was still wet and I wound up having to hang it dry… HOWEVER I didn’t have nearly enough room on the drying rack in my apartment, so I had to empty all of my wire hangers and hang the wet clothes on the hangers in my front closet. I left the door open and the light on so mold wouldn’t grow, but obviously, this was not ideal.

Furthermore; when I was putting my pills together, I realized that the remaining bottles of one of my medications were not filled with the proper medication (I had always gone by size of bottle on those ones because it was the only medicine that came in a bottle that big)... oops…

Knowing that I would more than likely not hear from my doctor before I left for the airport, I sent a message asking for the medicine to be called in to the pharmacy back home… then the new insurance company refused to fill it; but that’s a story for another time.

On Thursday night when I was supposed to be packing, my friend Jason had posted on facebook that he was uploading a new video of the abandoned Six Flags New Orleans. I call it my “Aspie Obsession”. I am obsessed with all abandoned amusement parks, but my true passion lies in SFNO. Anyhow, he posted that the video had been posted so I stopped packing and immediately started hitting the refresh button… Two hours later, I was still hitting the refresh button and was somewhat horrified that I hadn’t spent the last two hours packing. Around midnight, the video finally finished rendering and appeared on my computer screen. I spent a half hour watching it with a grin on my face. I felt that I had satisfied my obsession but I’d done nothing to prepare for my trip!

After my series of unfortunate events (many more than these three, but I hate to make myself look dumb), I was ready to travel. I worked both of my jobs on Friday night and returned home completely exhausted. I finished packing my carry-on, fitting my teddy in and my Tigger Pillow-pet in my suitcase, and climbed into bed.

I didn’t sleep… I was too excited (and anxious… but mostly excited)...

The next morning, I had some cereal, packed the car, and headed to the airport. I HATE flying! I don’t like airports, planes, and I definitely don’t like being out of control of the situation. Since my diagnosis, I have been able to receive accommodations at the airports and on the planes. Sometimes the help is great and sometimes it leaves something to be desired, but I am definitely grateful for it!

My local airport is very small. I don’t mind it so much. I still enter wide-eyed and “snap-necked” ( a phrase I coined to describe the quick jerking movements my head and neck make when I’m anxiously looking around) but don’t need any help navigating the airport. I do make sure to get there early so I don’t get stuck in a throng of people, but even if I did, there’s only about 50 people in my airport at a time.

About an hour before takeoff, I took my dramamine and zanex. As the waiting area filled, my headphones went on (although I sometimes look rather silly with the cord not plugged in to anything). Boarding was not as smooth as it normally is… they boarded all priority boarding with military (and I live in a town with an air force base) and AA Advantage members (that’s most of the town… AA is the only airline to fly in and out of our airport). Fortunately, once on the plane, I was in a single seat and the zanex sent me off to dreamland before takeoff (which for me is the best way to fly).

I HATE takeoff and landing. Nothing is ever perfect, and this time, I was asleep for take off but was awake for landing. My teddy was squeezed extra tightly but I survived. When I got off the plane, I stopped on the jet bridge and asked where I was supposed to meet my escort. Just my luck, the escort wasn’t there. I was brought to the gate and left while the gate attendant tried to get someone to escort me.

Because of the mixup, the special escort who was supposed to have training working with Autism and other special needs (as opposed to mobility needs) never came and I was escorted by a regular mobility assistant (someone who pushes the wheelchairs). He walked about 10 feet in front of me. When we were on the tram, I sat in the handicap seating and he stood on the other side of the tram. If I hadn’t been paying attention or if I’d been lower functioning, I can only imagine what could have happened because he was so far away. I told him I have a phobia of escalators and he walked right onto the escalator and proceeded down it like it was no big deal. I finally got onto the escalator and he was already off it and disappearing around the corner. The escort did not make things easier for me and other than showing me the way, it was almost like he was never there.

The second plane boarded much like the first, but instead of AA Advantage members, they boarded first class along with military and priority boarding. Again, I was surrounded by more people than I was comfortable with. I fell asleep before takeoff again and woke up to find that Paddington was on. I enjoyed the movie then watched one of my own on my tablet. Landing was once again a source of anxiety but I knew that my mother was waiting at the gate for me.

Once we landed and I released my grip on my teddy, my legs started bouncing up and down with joy. I was home and almost in my mom and dad’s arms.

Sometimes Aspergers Just Sucks

I love my new (second) job! It's perfect for someone with Aspergers. I roll silverware at one of my favorite restaurants.  It's great for me because I don't have to worry about talking to other people. At this job, as opposed to my full time job, I can sit and get my work done in a relatively relaxed manner. Even better, I get to sit and listen to movies on my phone while I'm rolling and I'm surrounded by the comforting smells of some of my favorite foods.

I follow a routine. Knife under fork, ridges on the knife face right, straw wrapper facing left and tucked underneath the knife's ridges, bottom corner folded up, left side crosses over, then roll and place napkin ring in a clockwise fashion with the sticky side at 12 o-clock. I make sure that every roll is neat and tidy. I make sure that no knives are sticking out, no napkins are coming undone, and the silverware is clean. It may take me a little longer than other employees to roll the silverware, but mine is OCD approved.

So if I'm loving my new job and it's so great for a person with Aspergers, why does Aspergers suck?

I got to work this morning and it was like any other. I made my way around the dining area with a spray bottle and a rag. I cleaned each table, booth, and seat. I said hello to the dishwasher and went into my "area" to get started. The dishwasher had already brought one tray of silverware into the room for me and proceeded to bring two more in.

Because I'm so small in stature, I rely on the dishwashers to bring the silverware to me, as it is typically washed in large trays that are very wide and very heavy when wet. I didn't really pay attention to where the dishwasher put the silverware; I just set about drying it off and sorting it so I would be able to quickly roll it.

I should have paid attention. The trays were on the floor. Okay... well they've been there before... no biggie...

BIGGIE!

As I was sorting the silverware, a man came into the room, looked around, and asked me if I could fit the silverware trays on the table. The table was overflowing with restaurant supplies. In my mind, it was comical that he would even ask. I didn't know this man from Adam and I replied that there wasn't room and thought nothing more of it. Employees come in all the time and tell me the silverware is in their way. I was working quickly to move it, but couldn't move any faster than I already was.

Then the man came back... the general manager was with him. He wasn't happy. He said something about the area not being right and they left. When one of my co-workers came in, I asked who the man was. He was the FREAKING HEALTH INSPECTOR! While I realize that we should be able to pass an inspection whether or not we know the inspector is there, I was very upset that no one had warned me that he was there. No one had come in to make sure that everything was okay for the inspection. In my mind, it was poorly handled...

But that didn't stop me from feeling horrible about it. All day, I kept replaying the interaction in my mind, trying to find clues that the man was the health inspector. He was not in a restaurant uniform. He carried a clipboard. He was wearing a jacket with an insignia on it, although I didn't focus on the insignia closely enough to remember it. I also kept replaying my response. If I was asked a question that didn't make sense to me (in this case because it seemed the answer was obvious) perhaps the better answer would have been: "let me get one of the guys to help move this large bag of sugar that's taking up half the table space and then the silverware trays will fit." Of course, hindsight is 20/20, but I am still obsessing.

In fact, my manager told me that if the inspector comes back and sees the silverware trays on the ground again, she will lose her job. WHICH MAKES ME FEEL HORRIBLE! And although the dishwasher was the one who placed the silverware trays in the offending spot, I still allowed them to stay put.

Sometimes I really wish I could pick up on subtleties...

Sometimes, Aspergers just sucks.

Unanswered Prayers?

I should be writing this entry from my room back home in MA... but I’m still here in Texas.

This was supposed to be the year that everything changed. On New Year’s Eve, I got the most amazing phone call. Funny enough, because of my literal take on language, I didn’t understand the call right away.

Since the day my dad started dialysis, every time my mom called and said she had news, my response was: “tell me we got a kidney”. After awhile, she stopped answering, but I would unfailingly ask every time just the same. During December, my dad was not doing well. He was back in the hospital and there were worries about his heart in addition to the usual worries about his kidneys. He had a blood clot. Thankfully, they found it and were able to remove it.

My dad was supposed to come to visit me here in Texas for the first time, but with the decline in his health, I began to worry about his impending trip. On December 30, I called my mother and suggested that I make the trip home rather than my father traveling here. She said there would be no need for that, but I was terrified that if he came down, he would get sick and I wouldn’t be able to take care of him.

That’s why I was so confused the next morning when I answered my phone.

My mom called and said she had some good news. I of course responded: “tell me we got a kidney!” She didn’t. She said that my dad would not be making the trip to Texas, but that I would be coming home in February for a week and that my aunt was a donor. Now to understand my confusion, you should first understand that my aunt (my MOTHER’S SISTER- never on my radar as a match) works for a travel agency and often is the recipient of free plane tickets. I assumed that she was donating a ticket for me to travel home to celebrate my father’s birthday. My response was a very underwhelming “okay”.

...About a minute passed...

Then my mom asked me if I was still breathing. ALL AT ONCE IT HIT ME! I started crying, I was speaking nonsense, attempting to explain that I had misunderstood, and attempting to confirm that my dream come true was actually happening. IT WAS! The transplant was set for February 17.

I couldn't be with my family, but I took a photo of my "happy face" and sent it to them.

We celebrated! We weren’t allowed to post anything online about the transplant or finding a match, but boy did we celebrate... and I just started calling people. I called my best friend, I called my old boss, I called anyone who would pick up the phone. I was on cloud 9!

Then the uncertainty came. First I was warned that the surgery date may change. Then I was told that the transplant team needed to meet to determine if the blood clot would require the date to be pushed back... but there was almost no chance of that happening.

For the first time in a very long time, I set my mind to one result: this was happening and it was happening on February 17. I believed that if I thought the thought hard enough I could wish it into being. I didn’t believe that G-d would dangle a happily ever after in front of us like this, only to rip it away.

I started having nightmares again. I called my grandmother and cried on the phone for a long time while I explained how scared I was that the surgery wouldn’t work or that I wouldn’t make it for the surgery due to weather/travel problems/etc. My nights were plagued by anxiety-ridden thoughts. I wasn’t sleeping. Selfishly, I said to my grandmother that I couldn’t take another month of this.

The next day, I discovered I wouldn’t have to.

The transplant team finally made up their minds. They want my dad on at least six months of blood thinners for the clot before they will do the surgery. My world came crashing down.

(Thank you to my grandmother who just spent 29 minutes on the phone with me, as I’ve been keeping these emotions bottled up inside for the last month and I just needed a good cry... now back to our regularly scheduled blog post).

I withdrew. I didn’t even call my grandmother. Not until tonight. I’ve never done that before.

I lied. I acted like everything was okay when inside I was torn up, feeling like I had somehow wished it into not happening instead of willing it into happening like I was trying so hard to do.

I avoided. Every time my mom talked to me about scheduling a trip home, I changed the subject.

I planned to see my therapist on the day that originally was meant to be so life-changing. I tried not to think about the date. I tried to be grateful that I wasn’t going home to the endless blizzard that they were experiencing. I even got excited about an anticipated movie night with people from work.

Unfortunately, the movie night was cancelled and, as my brain does, a little depression grew and burrowed and unleashed everything that’s been bottled up for the last month.

In a way, I’m glad it happened tonight. I was able to get some soothing words from my grandmother and greatest ally. I will probably sleep better tonight than I have in a long time. I have time to process my feelings before the day arrives and I will still see my therapist that day.

But I made my biggest decision of the night just now as I was typing my last sentence. After my appointment, I will go to dance class because our dream still is coming true, just not as soon as we hoped, and I want to celebrate again. I want to celebrate a hero. I want to celebrate my father.

...And I think I will plan that trip home...

Green Glass Love

I spent today alone. That’s not exactly true. I spent today surrounded by people... but I was alone.

“Just an ordinary day” I told myself as I got dressed for work. “Nothing special” I thought as I brushed my hair. “It’s not even a real holiday” I argued as I drove myself to work. Ok, I’ll say it: “I hate Valentine’s Day!”

I didn’t always hate Valentine’s Day. I used to be a girl who dreamed of a once in a lifetime love. I wanted nothing more than to have someone who loved me more than anything. Someone to laugh with and cry with. Someone to grow old with. Someone to be mine. Someone to have a family with. Someone who would be there beside me unconditionally.

I grew up listening to show-tunes. One of my favorite concepts was the “green glass love” from Thoroughly Modern Millie: a love that would be the same whether he were a prince or a pauper. I used to dream of the day that I would find my green glass love.

Over the past several weeks, I’ve become a part of, well I guess you could call it a “fandom”... It’s a daily vlog channel called The Frey Life. It features a husband and wife duo, my age, named Peter and Mary. They have the most beautiful green glass love I have ever seen. Mary has CF and Peter is with her through the good, the bad, and the ugly (or in Mary’s case pukey). I have to admit that when I watched the first vlog, I fell in love with Peter. Not that way! I fell in love with the idea of him. I fell BACK in love with the idea that someone existed who would be loyal and true in all instances, not just when it suited him. I loved seeing a love that saw beyond health problems. I love that every vlog ends with Peter and Mary’s smiling faces, even if it’s not the best time. I want a Peter of my own.

That’s where life gets tricky. You see, I’d kind of already given up on that...

DAD IF YOU’RE READING THIS BLOG POST, PLEASE STOP RIGHT NOW.

Four years ago today, I thought I was in love. I was having dinner with the man of my dreams. The ring of my dreams was on my finger. I thought life was perfect. I truly thought I’d found the man I was going to marry.

Unfortunately, my Aspergers (then undiagnosed) presented a serious problem.

I lost that love because I couldn’t be intimate. I can’t be intimate. Just thinking about the act makes my skin crawl and my heart race and I get all nauseas. I wanted things to work with my love; I really did. I tried to convince myself that it would be worth it; that I needed to give him what he needed so that I could keep him. I don’t know whether it was fortunately or unfortunately, but no matter what, I couldn’t convince myself. The last weekend we spent together he gave me a back massage. All at once I got nauseas and raced for the bathroom. I hid out there until we had to leave the room. Later that night he and I fought. He accused me of leading him on and playing with him and I had no real defense because I didn’t understand what was happening any better than he did. I will NEVER forget being on the phone with my mother (while in a hotel room with him), being screamed at to the point that I was afraid.

With that said, I didn’t give up on love because I was afraid or even because of him. I gave up because I AM afraid that it will become a recurring situation.

My history with men leaves much to be desired. My first boyfriend was gay. We dated for TWO YEARS! He came out on prom night. YEOW! My next boyfriend was NOT boyfriend material. He was a liar, a bad-boy, and he hurt me in a way that I will never recover from. Then there was the boy I mentioned; my lost love... and for a lovely bookend, one more gay boyfriend.

So I began to wonder: am I setting myself up to fail at love? The question makes sense. How many bad choices do you need to make before you wonder if you’re anticipating the outcome? The idea of being intimate has been such a locked off topic in my mind for so long that I wonder if I am purposely getting into relationships with people who I KNOW I won’t become intimate with. If I am, I’m my own biggest obstacle.

I question all of this because I’ve begun to wonder if my life has to be this way. I have a friend with Aspergers who has a husband and a son and she’s truly happy. At the same time, my Aspergers is preventing me from having a husband and a child; two things that would make me very happy. I’m not a desperate woman sitting at my computer writing this in the hopes that someone will read it and decide to go out with me. I’m writing this as an open letter to the Aspergers community. I need help. I want to change my future. I want to believe that love can come my way. Any helpful comments would be most appreciated. 

Betrayal

Betrayal

aka: A Note to a Fraud

I've had lots of different psych doctors over the years. Some I have outgrown, some have outgrown me, some have moved, and some have moved on... but no one had betrayed me until now. 

I have always found it hard to trust people. I still haven't even shared this blog with all of my friends and family... and yet, I chose to trust... and that trust was misplaced. 

During my move to Texas, the most difficult thing was finding new doctors. My medical history can only be described as "complex". Couple that with Aspergers, (bipolar?) depression, and generalized anxiety disorder and NO ONE wants to take you on as a patient. I was very lucky to finally find several good doctors. 

When my primary care doctor recommended this psych doctor, I trusted her and therefore trusted him by default. I guess I'm naive. I saw a man who had a kind face, was from back home, was Jewish (very rare where I live now), and somehow made me feel like I was safe. 

I never researched the man. The doctors I chose back home were chosen after extensive research; but for some reason, I didn't feel the need... I guess that's why he was such a good criminal.

Before I continue I do want to say that he was a good DOCTOR. He did everything he could to get me back onto the one mood stabilizer that had ever truly made a difference (and it has again). On a day when his office was closed due to a storm, I had a car accident and a panic attack... I called the office and left a message and he called me back within 30 minutes to check on me. When I experienced antisemitism, he did everything he could to help me understand that it had nothing to do with me. 

I guess it's because he was a good DOCTOR, that I chose not to include his name... although his crimes are public record.

On Black Friday, the world as I knew it changed. I called the pharmacy to see why my prescriptions hadn't been filled and they told me they didn't know where my doctor was. I became increasingly agitated because they wouldn't elaborate; they just said they weren't sure if he was still practicing medicine. I thought he was just closed for the Thanksgiving weekend... if only I knew. 

I went to the pharmacy to get an emergency supply of medication and, upon attempting an apology for my agitation, the pharmacist told me that he assumed I knew my doctor was going to jail for insurance and medicaid fraud. Not only was I shocked; I was angry. 

I was mad that for over a month my doctor had been in legal trouble and that no one had told me. I was mad that the pharmacist just dropped the news on me like he was telling me the day of the week. I was horrified that I had trusted this man... and upon doing research, I was horrified that he was even still practicing when I began seeing him, since he was a fugitive from the law, hiding in Europe, during the early to late 90s FOR THE SAME CRIME!

Right now, I want one thing. I want to be able to look him in the eye and say this, but that's not possible, so this will have to do:

I thought you were a good man; a decent man; someone I could trust. I was WRONG! You were not worthy of my trust. Yes, you helped me but while doing so you also defrauded me. You claimed that my insurance wouldn't cover my visits even though I had an authorization number from the insurance company for 12 visits a year. My parents and I trusted you and they paid you because you were helping me. They didn't care how much it was because I was getting the help I needed... but you betrayed me. I told you the day I met you; when I was shaking, ringing my hands, unable to look you in the eye; that I have a hard time trusting people. You took the trust I had and you abused it. I don't care anymore that you helped me. You are a HORRIBLE person. You deserve every bit of punishment you have coming to you. You should NEVER be allowed to work in the medical field again! Your patients will prove to be far better people than you were.    

Out with the Old... and In with the New!

I’ve always approached new things with trepidation. Will I be good enough? Will people be nice to me? Will I feel safe and comfortable? Those are just three of the endless number of questions that race through my mind when I am faced with change.

This past week has been no different. I took a huge leap of faith. I left the pizzeria that I’ve been working at for over a year, in favor of a job at a nicer, more upscale restaurant. As important as it was for me to do this, it was also a decision that did not come easy. I’ve been “attempting to leave” the pizzeria for about four months, but it’s hard for me to leave the known for the unknown. Fortunately, I finally shut my brain up long enough to listen to my heart.

So giving notice and preparing to leave the predictable was done... but the hard parts were still to come. There’s always the question of “do I tell my co-workers about my Aspergers?” Of course management knows; but is it something I’m ready and willing to share?  There’s also the question of presentation; that is, “how do I present myself?” I know I’m an uptight worker who wants to do everything perfectly... but I also know that the personality I just described is the cause of 99% of the problems I have with my co-workers. Is it possible for me to start anew at this new job and not show the side of myself that’s anal-retentive? If I am able to conceal that part of myself and people want to become friendly, how do I do that? How do I go about fitting in? So many questions flooded my mind and I hadn’t even gotten to job related questions yet.

I am pleasantly surprised to say: not only did my first two days go better than expected; I have not one bad thing to report. I found myself in an amazing environment. At first things were a bit difficult. I didn’t quite understand all of what my trainer was saying. I took some of it too literally... as usual... but after explaining that I have Aspergers, she immediately changed her approach. As it turns out, she has two brothers on the spectrum as well. Not only is she incredibly sensitive to my situation and my needs; she made sure that I knew that if ANYONE gave me a hard time I was to let her know immediately because she would not tolerate it. Other than my mom, I don’t think anyone’s ever said that to me before.

Another long-time employee was standing near us when I told her about my Aspergers. He attempted to be helpful (he really did) by taking it to management and asking whether we should disclose to the entire staff. Thankfully I had the courage to speak up and say that I had intended on telling the three hostesses I’d be working with on a daily basis and leaving it with that unless it became necessary to disclose to others. It was a much smoother conversation than any others I’ve had on the topic.

Another thing that made my time so special was meeting a woman named Ashley. This woman is on the spectrum and eats at the restaurant every day. She often sits for hours, drawing pictures for the staff, chatting, entertaining herself... but what really surprised and inspired me was when I was told that Ashley sometimes works for the restaurant. Any company that will take someone with needs like hers under their wing is a company I want to be a part of.

My 24th Birthday (only 2 months late)

It may seem strange, what I chose to do for my 24^th birthday, but then again; if you read my blog, you already know to expect the unexpected. My mom came to visit me for my birthday and we planned a trip to San Antonio. Let me preface this post by saying that I have never had more than a sip of wine and my 21^st birthday party was 100% dry. That said, the “typical” birthday celebrations don’t necessarily apply to me.

After spending the previous year alone on my birthday, my mom was determined to make this one great. I would NOT be cooking my own cake. I would NOT be eating a personal pan pizza all alone in my apartment. I WOULD be doing something exciting with my mom.

We went back and forth for awhile about what to do. My mom loves amusement parks (I do too, but I don’t ride thrill rides and she loves them) so we considered going to Six Flags. Well... let’s just say I went through a period of obsession with investigating amusement park accidents and a LARGE number of them took place in Texas. Add that to the large number of rides in the park that I wouldn’t be able to ride and Six Flags was out.

The next thought was one that a part of me still wishes we had gone with. There is a park called Morgan’s Wonderland that was created for guests with special needs. They provide free admission to guests with special needs and very reasonably priced admission for everyone else. They have done amazing things to accommodate their guests. Each guest receives a GPS Adventure Band with an RFID chip in it. This band can be used to capture memories and photos, but can also easily be used to locate members of your group. Food and drink can be brought into the park, so those with allergies, special diets, and food sensitivities can know they won’t go hungry. What really caught my eye was the Sensory Village. Specially designed with Autistic kids in mind, the sensory village would have been really cool to see. Unfortunately, when I called the park, they told me that I was probably too high functioning to really enjoy myself. I wish I hadn’t taken their word for it. I wish I had gone, even for just an hour, so I could have seen it for myself.

After that, other ideas were tossed around. We discussed going to the River Walk, but I was concerned about the number of people in such a small space and that I would not be happy there. We thought about going to a “wildlife ranch” but it was a drive thru and my mom made a good point when she said that I’d want to stop the car and watch the animals while those behind us would be blaring their horns.

Finally we decided. For my 24^th birthday, I wanted to go to the San Antonio Zoo and Sea World.

I knew there would be a lot of people and it wouldn’t be the most comfortable experience I’d ever had, but I was so excited, it almost didn’t matter... ALMOST.

Sure, I’d been to amusement parks before without major issues. We love Disney! But thinking back on our trips, something about Disney has always been different. I’ve described it before like I was watching myself do things and that’s kind of how my trips to Disney were. When it got crowded, I would escape and somehow that worked for me. It must be the magic of Disney. You hear all the time of kids with Autism who act like a different person the minute they set foot on Disney property. As for previous trips to other amusement parks, I almost always enjoyed myself on the rides, but found myself very self-consciously moving through the lines, making sure that I never accidentally brushed up against someone else or got too close to anyone. If I saw a crowded line, I would tell whomever I was with that we could come back to the ride. More often than not, they said it would be worth the wait and I was stuck waiting, but although I never expressed my feelings out loud, the truth is, crowds and I have never mixed well.

The morning of our trip finally arrived. Mom and I got in the car early in the morning, set the radio to Greg Bell’s Radio Classics, and within about ten minutes, I was out cold. Poor mom drove the entire way with me sleeping (and never complained once. THANKS MOM!) When we got to the zoo, I was in awe. There was so much to see and we hadn’t even gotten out of the parking lot yet. I love photography so I was taking pictures of trees and bridges and signs and wasn’t even worried about getting into the actual zoo.

When we did get into the zoo, we immediately realized that we’d picked a great time to go. It wasn’t too crowded and I’d just be able to enjoy. And I did enjoy myself. My mom said that there’s nothing like going to the zoo with me. I studied each monkey, lemur, orangutan, and tamarin. I took pictures of everything and every animal. I gleefully went from habitat to habitat, spouting off little known facts about each animal, explaining why that animal enthralled me, and attempting to build a connection with the animal. I was able to connect with some; I coaxed some out of hiding and some even posed for me. I never pushed and never rushed them. I waited for them to come to me. Although we left the zoo exhausted and dripping with sweat, it was an amazing experience and I wouldn’t trade it for anything in the world.

The next morning, I was 24 years old and my mom and I were on a shuttle headed to Sea World.

When I was just a little girl, my parents had taken my brother and I to Sea World in Florida. The park is literally in my aunt and uncle’s backyard. They didn’t come to the park with us, but we were going to see them afterwards. My Auntie Rozie was an amazing cook. That day, my mom and dad had let my brother and I eat popcorn for lunch. “Don’t tell Auntie” they told us.

...Well, we got into the car and I opened up my little mouth and said “Auntie Auntie, guess what we had for lunch!? Popcorn!”

Having lost my aunt since moving to Texas, I was a bit emotional about going to Sea World. In the shuttle, mom and I re-enacted the story, laughing as we went. Once we pulled up, I was too awestruck to be worried about my emotions.

I’d like to say I dealt with the crowds in a fantastic manner and overcame my Aspergers... but come on, this is reality. We got our tickets easily. We were at the beginning of the line of people to go into the park. My troubles began when a woman decided to form her own line where one didn’t exist. I was going out of my mind. I know it had nothing to do with me, but she was talking very loudly and she was wrong and I just couldn’t stop myself from commenting. Luckily, being me, I commented to my mom and no one else.

Then, we learned that the maps they had just given us were incorrect and there would be a stand when we got into the park with the correct maps on them. There was absolutely no way I could head towards the mosh pit that stand would undoubtedly become, so I didn’t. Mom went to the stand and I went to the flamingos. Being as quiet and unthreatening as ever, they began to come over to me and let me take their pictures. Mom got into the next big throng of people, waiting to go to one of the theatres, and I happily stayed with the flamingos. I stayed with them until people started invading. I know it’s a public place and I know that’s what the exhibit is there for, but the people were clearly making the flamingos uncomfortable. Much like the previous day at the zoo when I would stay after other visitors had moved on, I noticed a change in the behavior of the animals from the time when I was there alone to the time when these people all crowded around and started making noise. Feeling as uncomfortable as the flamingos, I went to find my mom.

After listening to (and impromptu signing) the national anthem, the park was opened and we were on our way to the first show. We knew it would be busy, so we found an end where I could be, so I didn’t have to sit next to a stranger, and we spread out a little bit so that I didn’t feel claustrophobic. My mom and I both had a terrific time at the show. I took tons of pictures. It was a great start to our day. The thing I didn’t count on was the exit. Mom tried to get me out of the theatre before everyone started pouring out, but it didn’t quite work and I was stuck feeling very claustrophobic, cupping my hands around my eyes to give myself tunnel vision so I didn’t see as many people, and struggling to get out. I never thought I would admit this, but if that’s what it took to be able to enjoy the show, I’d do it again.

And so it went. We went from show to show; our strategy tightening each time. Before the final show of the day, I needed food so mom had me go stand at the entrance while she got something to eat. Thinking back, either way we had done this, it would have had the same result. I was okay at the beginning. There weren’t too many people and I was at the front of the line. Then, all at once, it was packed. There was no line, only a mob of people jostling each other. I stood there with my arms drawn in tightly and just tried to stay calm. When my mom finally got to me, she thanked a woman behind me. I had no idea, but a stranger had noticed through my body language that something was wrong and had used her own body as a barrier to keep people away from me. I don’t know the stranger’s name, but I am very grateful to her. Once my mom joined me, I got the attention of a security guard (which I’d been trying to do the whole time without success) and he let us stand on the other side of the gate so that I wasn’t stuck in the mob. I didn’t handle it in a fantastic manner, but looking back, I’m proud of myself.

Our last stop of the day was the dolphins. I had wanted to save them for the end because I wanted them to be the last thing on my mind when I left. Mom and I caught the very last training session of the day and I stayed around afterwards taking photos and observing. One dolphin in particular did connect with me. He kept swimming over to me, even though I didn’t have any fish to give him. He posed for my camera; time after time. I firmly believe that dolphin understood (the autistic mind).

Oh, and as for something special to remember my Auntie Rozie:

Mom and I played one of the boardwalk games and I won a pink orca that I named Rosie. 

For The Love Of Animals

I’ve always loved animals. Not always in the conventional way... When I was younger, I was terrified of dogs. I loved to look at them, I just didn’t want them jumping all over me or trying to lick my face.

I was fascinated by animals. What did they think about? How did they see the world? Did a dog know he was being laughed at when his owner taught him a new trick? Did he feel sad? Did the cat curled up at the foot of the cradle where the newborn baby slept know that she guarding a new life or was she just napping?

Of all animals, I fell in love with monkeys, horses, and dolphins. I’ll start with horses because it’s the easiest to explain. It’s relatively “normal” behavior for a young girl to desire a horse of her own. I was no exception. I wanted a horse. I wanted to ride. I wanted it all... but I had to choose between dance and riding and having danced all my life, riding never stood a chance. Instead I studied horses. I collected books from the local second hand book shop on horse anatomy, how they move, how they live, how to draw horses... I collected fictional books, like The Saddle Club series and of course watched the Canadian television series of the books. I was addicted to the television show Wildfire; even participated in the crazy plans to save the show after it was canceled.

Screen capture from the pilot episode of Wildfire

In school, I did a project on equestrian therapy and decided that someday I would do that. We had to do a financial assignment where we “purchased” real estate and explained how we could justify the expenditures. Mine was simple: I chose a large ranch out in California. It had stables, a guest house; everything I would need to start my own therapy ranch. I got an A on the project, but the comment left was “a great idea but where’s this money coming from?”

I dreamed of riding. In my imaginary world, I rode all the time. It was amazing. That said, my imagination was nowhere near the real thing. I’d done pony rides before. At camp, I was so small that when the rest of my group got too big to ride Midnight (the camp pony), I got to spend all my time with her. I’d also led horse rides before. I worked an apple festival with a friend of mine and we each led horses around a ring as young children rode atop them. I loved interacting with the horses, but I wasn’t riding. Finally my time came.

I’d been begging my dad for years to go, just the two of us, on a father-daughter vacation to the country. We’d go riding, look at the stars, have a picnic... I just knew that if we went, it would be perfect. We finally went in the summer of 2006. I was 15 years old, about to turn 16. Our trip was, in one word, amazing.

In my own words “riding a horse is nature’s Zoloft”. It’s true. It releases serotonin to the brain, allowing even the most depressed person to feel happiness. Sure, my dad and I did other things on the trip. We went to a waterfall and climbed all the way to the top, we drove for two hours without finding a restaurant, we saw Chicago live onstage... but NOTHING beat that trail ride. I got to share one of my favorite firsts with my dad and that is something I’ll treasure forever.

I’ve gone riding since, but every time I go, I think back to that first time. I think back to Aurora, me, dad, and Connecticut. I think back and I smile.

Next we have monkeys. I’ve always felt a special connection to monkeys. My very first trip to the Boston Science Museum cemented that connection. Upon entering the Cotton-Top Tamarin exhibit, I was fascinated and didn’t want to leave. If left to my own devices, I would have spent hours in that room watching the tamarins and learning. My grandmother took us to the science museum a lot growing up. I’d regale her with the story of the tamarins and why one was missing its tail. I’d tell her about their lives in the wild and how their lives had changed and stayed the same since being placed in captivity. I’d sometimes draw a crowd of listeners. It was funny really; fully grown adults hanging on my every word as though I worked there, when in reality I just loved the exhibit.

Any time we went to the zoo, I immediately wanted to go see the monkeys. I loved them all. I studied them. I watched their movements. They were careful. They seemed timid at times, especially the gorillas. If I stayed long enough, they’d start to relax... even let me take pictures. They were like me... uncomfortable when people were staring at them and causing a ruckus but content when left to their own devices. As I explained to my mom: “it’s like they have Aspergers too”.

I stood and watched. I talked in a soothing voice, made soft noises, and waited for them to come to me. Nine times out of ten, they did.

I always wanted a monkey of my own. Monkeys are the only animal in the known universe that can communicate with humans. I sign, monkeys can learn to sign. I was always fascinated by that capability. I wanted to put it to the test myself. See how a monkey acquires language. I know I’ll never be able to do that... but it’s still nice to dream.

Finally there are the dolphins. Dolphins are the most intelligent of creatures. As much as I see myself in a monkey, I also see myself in a dolphin. Dolphins are intelligent but shy. They strive to reach great heights and keep trying no matter what. There’s actually research going on that’s discovering that children with Autism and dolphins communicate in very much the same way.

The research shows that dolphins and high functioning Autistics (read Aspies) possess “intuitive genius”. The (amount of) cycle of brain waves in Aspie children and dolphins is equal; both lie in the “intuitive genius” range. According to the research: “At such a high mental processing level, dolphins and autistic children have the ability to pierce space and time and communicate through what is known as “thought transference”. In a split second, they can feel and read a person’s energy and respond.” (Jean Genet)

So why am I talking about animals? You’ll find out tomorrow.