Thursday, May 13, 2010

Everything in Moderation

So, here we are now on the 13th of May, and I have some wonderful new things to write about!

First of all, on May 1st, I had a first of my own: my first time acting as a moderator for a panel at a conference. AHA-NY ( is a support organization on Long Island for individuals with high-functioning autism and Asperger's Syndrome. My mom happens to be on the board of this organization, and I've known the president, Pat Schissel, for a great many years. I got my start in public speaking at AHA-NY's Spring conference ages ago, as a member of the teen panel when I was 14.

That was when the conference was still held at Roslyn High School, but now it's become bigger and better than ever, and for the past several years, has been held at Adelphi University in Garden City, NY. This year promised to be extra special, as the keynote speaker was John Elder Robison, author of Look Me in the Eye. As it turned out, John was also one of the speakers on the adult panel...the very panel that I was asked to moderate.

The topic of the panel was adults who had received their autism diagnoses in adulthood (in their 20s, 30s, 40s, and beyond) and how it affected their relationships with others and their lives overall. Aside from John, the other panelists were Ryan Oldis, Zosia Zaks, and Branden Plank. I remember standing, waiting, as Pat introduced me to the crowd. I actually spoke on another adult panel at that conference five years ago, with Stephen Shore and another person, and it was also the last AHA Spring conference that I attended. How fitting, to be returning in this new role.

I think I did a fairly decent job, despite not having the effortless smoothness that seasoned moderators possess. I was able to meet John Robison before the panel, and after at the post-conference gathering at Pat's house, which was quite nice. And, funnily enough, I will be seeing him again at GRASP's annual benefit on June 8th in NYC, where he is receiving the DSM (Distinguished Spectrumite Medal) award, and where Michael John Carley has asked me to speak for a few moments about what GRASP has meant to me.

In other news, on April 29th, I defended my Masters thesis for a second time. I spent months revising and reworking my proposal, with the help of my advisor, Ken Reeve, and together we made my study a thing of beauty to behold. I hardly felt nervous at all as I prepared for my defense--and those preparations included making food for the big day to bring to my committee: Quinoa pilaf with spring vegetables (asparagus, orange bell pepper, red bell pepper, zucchini, golden beets); mini-grilled cheese sandwiches with fontina, Parmesan, sage, and prosciutto; and a blueberry cornmeal cake for dessert.

The defense went so smoothly--far more than the first one had back in December. And I am pleased as punch to report that my proposal was accepted with minor revisions! So that means I just have to make a few small changes, and I can then start running my study. I've met with my professor and gone over the changes that need to be made, and if all goes according to schedule and I obtain my participants without too much trouble, I should be up and running by the beginning of June.

The last bit of news that I have to share is that this weekend coming up is very special, because it's my graduation. Sunday is the commencement ceremony, and I'll be decked out in my cap and gown, walking up that aisle and on stage to receive my diploma (holder). I feel like a bit of a phony because I'm not actually going to get my diploma until August (since I'm not finished with my study yet). But the event itself is still important, and I just can't believe it's finally here.

I'm going to get pictures with my professors and my family (my mom, dad, godmother/aunt, and godfather/uncle will be in attendance), and will put them up here on the blog once I have them, so keep your eyes on this space. :)

Sunday, May 9, 2010

Thoughts on Mother's Day

Mother's Day is the day we celebrate mothers. We also celebrate foster mothers, grandmothers, aunts...those who are with us now and who have come before us to play that unique, unalterable role in our lives. I was at my parents' house on Long Island yesterday. My mom's cousin Lenore and her daughter Jen came from New Jersey to celebrate the day with us. We were eating dinner, talking of many different stories of life in years past, moments from my mom and Lenore's youthful days, and memories in which our lives intertwined in different ways.

One particular memory that came up was what happened to my mother when she developed post-partum depression after I was born in 1983. I was five weeks early, as many people know--born March 23rd, instead of the expected April 27th. Everything was chaotic in those early days, though blissful; my mom nursed me without issue from March right on through to the summer.

It was in July that things changed.

I sat listening as my father described what it was like--how she would stand in the doorway of our old house on Jamaica Avenue, standing as if waiting for a trolley car to come by. She'd begun to slip before then, and so my dad had ferried baby me off to New Jersey, where my Sitto and other grandparents took care of me. He watched her crumbling, the very threads of her sanity coming unloosed, day by day. Hallucinations. Thinking she had the answers to the world's problems...while my dad sat helpless, unable to find the answers to hers.

She was hospitalized in the psych ward at Mather Hospital for a brief period, but was able to convince her doctor to have her released. But still, my dad couldn't handle her, and as the months went on, she drifted farther away. He went to bring her back to Mather in November, on the eve of Thanksgiving, only to find out that their 11-bed ward had no room for her--they'd given her bed away.

The next nearest facility was in Smithtown, and the only vehicle able to take my mom was a police car. It was late at night, and my dad drove as fast as he could in his then-car, a Volkswagen Rabbit, trying to keep up with the cruiser.

My mom stayed there until January, and every day, after he got finished teaching, my dad would go to visit her. He'd buy her egg creams in the hospital cafeteria (her favorite), and would stay with her for the two hours that visitors were allotted. He described how, when he would leave, the door of the ward would coldly lock shut behind him. I could tell how painful it was for him not only to visit, but to leave her there.

The doctors tried several different medications to help my mother, but none worked. This left only one other course of treatment: electroshock therapy. She had eight treatments in all; it was finally after the fourth that my father said he saw a change in her--saw the light begin to return to her eyes as she slowly grew lucid. The hallucinations stopped, and she became something like her old self again.

Eight electroshock treatments. That's what it took to restore the chemical imbalance in my mother's brain, to bring her back from this dark place that she'd been living in. She was prescribed lithium and seen under a doctor's care for a year following her release from this facility. My dad was able to bring me back to Long Island, and there, my mother learned to take care of me, for a second time.

My father is not what you'd call an emotional man. As I sat at the dining room table, my knees pulled up tight to my chest, I could see the pain in him rising to the surface. The slight watering of his eyes as he recalled the details so vividly. I felt a tightness in my own chest, an overwhelming sadness that my mother and he ever had to go through that. I know, without question, that it was one of the most difficult periods of both their lives.

Even though I know I have no reason to, some small part of me feels responsible for what happened to her. I was just a baby at the time, but it was carrying me that caused the chemistry of her body to change. And it left her sick...sick to where I'm sure my dad must've wondered if she would ever truly be well again.

I was a lousy person when I was a teenager, but, most teenagers are. I know I wasn't as grateful for her as I should have been, and now, especially after hearing my dad recount that story today, I don't know if I'll ever be grateful enough. I've heard it said that mothers do so much for their kids--they help them, love them, discipline them...and sometimes suffer for them. But I never wanted my mom to suffer for me.

Two weekends ago, she and I went to visit a former teacher of mine from high school, Ms. Llorens. I had her for Latin in 7th grade, and her son was in the same grade as I, and only one of a few classmates of mine who ever treated me decently. She was diagnosed with breast cancer not long ago, and has undergone chemotherapy, and, after taking the month of May off, will have to undergo radiation treatment throughout June.

Although my mom has visited her several times (always on Sundays), I hadn't had a chance to see her since finding out about the cancer. I didn't know what to expect when we went over to her house, and then the door opened...and she was still her. She had a knitted cap on, and her eyebrows were nearly all gone as a result of the chemo. But when she smiled, it was the same wide smile I'd always remembered, pushing her cheeks up and rounded as it spread across her face.

We sat on some couches in a room next to the kitchen, drinking tea, and she and my mom ate pieces of the blueberry cornmeal cake I'd brought that was leftover from my thesis defense. The topic of conversation varied widely, and at one point, one of her other sons called the house. She briefly spoke a bit of Spanish to him on the phone, and the sound of her speaking it was like music. I remember how, when I was in high school, she'd stand outside her classroom greeting incoming students with a melodious, "¡Hola!" and that big smile.

The greatest connection Ms. Llorens and I share, however, is that we have the same birthday. I sometimes joke about how everyone and their brother seems to be born on March 23rd these days, but I never minded sharing a birthday with her. Somehow, it made it more special, and I would always walk into the Foreign Language Office and say, "Happy Birthday, birthday buddy!" and she'd smile right back at me and wish me a happy birthday.

So as I sat there, cup of tea in hand, listening to her talk about the cancer...the sheer awfulness of being told that you have it, and the strength that she hasn't had because of it, and how long it took her just to be able to leave the house, I could feel the tears springing up at the corners of my eyes. I told her that if I could, I would take all of the pain she experienced/is experiencing and would feel it for her, so she wouldn't have to. And I meant it.

I later told my mom the same thing, that if she ever got sick in some way, I would want to do that for her. She just chuckled softly in her mom way and said, "Thank you, sweetie." But she was sick, once upon a time, and I cannot imagine what Ms. Llorens is going through, or what my mom and dad went through all those years ago.

The only thing I know is that I would give up the entire world if I could take away all of the fear and anxiety and anguish that they felt. Because I know moms are supposed to be the givers, the sacrificers, the do-it-alls...that's what we celebrate on Mother's Day. The seeming infallibility and invincibility of these wonderful women who have shaped our lives so profoundly. To know of Ms. Llorens' and my mother's vulnerability is frightening, in part because I know I'm no longer the little girl who thinks grownups are strong and perfect. But it's also scary because I can't do a damn thing about either situation.

Well, maybe that's not so true. I know that one thing I can do is to hold both of these women close in my heart, as I always have. And whatever guilt I may feel over my mother's sickness or grief over Ms. Llorens', I still want what I've always wanted: for them to be proud of me. So all I can do is honor them, by being the type of women they are. The givers. The sacrificers. Mothers who do everything and ask for nothing, but deserve so much. Hopefully, someday...I'll be able to give it to them.

Me, around age 3, with my mom.
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