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.