Erik Quinn: The Heart of a Family: Catharsis

Saturday, August 02, 2008


catharsis [kuh-thahr-sis]

1. The purging of the emotions or relieving of emotional tensions, esp. through certain kinds of art, as tragedy or music.

2. Medicine/Medical. Purgation.

3. Psychiatry. (a) Psychotherapy that encourages or permits the discharge of pent-up, socially unacceptable affects. (b) Discharge of pent-up emotions so as to result in the alleviation of symptoms or the permanent relief of the condition.

You thought I was done with the convention, didn't you? I have been putting off writing this last post as long as humanly possible before the memories fade. In a way, I wish they would. I don't want to think about my last day in California. Not at all. It's eating at me, though, so I must close this chapter and move on.

The hotel felt like a ghost town on Sunday morning. The majority of the convention attendees went home the night before. We checked Erik into his program and walked to the ballroom for our last continental breakfast and morning announcements. Dr. Helen Tager-Flusberg came to the podium and gave us an overview of what was taking place at the International Professional Conference on Williams Syndrome following our convention. Researchers from the United States, Canada, Germany, and Japan would be gathering to share information on medical, cognitive, and neurological components of Williams syndrome. Dr. Tager-Flusberg went through a lengthy outline, during which some of her wonderfully dry humor emerged, explaining the genetic research being done on people with WS. She reported that "knockout mice" were being engineered which were missing just a small portion of the deleted genes in WS to determine the purpose of each gene in human beings. She also explained that the brains of individuals with WS are being imaged via PET/CT/MRI to analyze structure and function. She mentioned the ethics of discovering a cure for Williams syndrome and said that although this is a controversial subject, eliminating the sometimes deadly health problems that accompany it is less so; therefore, that is where some of their attention is apparently directed. Although I considered myself enlightened and open from the week's experiences, I doubted I would ever find myself standing outside a laboratory protesting a cure or prevention for Williams syndrome. Then again, you never know. Give me a couple decades to think that one over.

And that was that.

I said goodbye to new and old friends, and we walked over to pick up Erik for the last time. I hugged the volunteer who seemed to focus a lot of attention on Erik during the week. She seemed surprised by this gesture, but I refused to slip into my usual self-conscious, shy mode. She was getting a hug, dammit. She should consider herself lucky I didn't kiss her squarely on the mouth after all of the work she did. She smiled and motioned to a chair heaped with beautiful handmade blankets and quilts made by Project Linus, a group of volunteers who "provide love, a sense of security, warmth, and comfort for special children through the gift of new handmade blankets and afghans lovingly created by 'blanketeers'." I chose a colorful fleece blanket with chunky, fringed edges, and we left the child care area for the last time. Erik went back to the room with my parents, and Brian and I sat in the restaurant downstairs and enjoyed appetizers, lunch, and a gooey chocolate sundae, after which we headed to the deserted swimming pool, rolled up the legs of our jeans as best we could to expose our pale skin, and relaxed on lounge chairs in the sun like true Oregonians before heading back to the room.

My brother John and his wife Su joined us for an early dinner. Our group walked to Joe's Crab Shack. The noisy, party-like atmosphere inside the restaurant seemed to bother Erik's ears, and I was pleased to see they had outdoor seating with large tables. Erik and I headed for the adjacent play area, and he actually climbed up onto the equipment with some encouragement. However, I felt my mood slip slightly when I witnessed a little girl get in Erik's face and repeatedly ask him to say things to her. He merely stood there and silently stared at her. I realized I was more sensitive at that particular moment, but we had been in the real world for 20 minutes, and I was already having a hard time adjusting. Our family was once again a freak show already.

We enjoyed our meals and walked back to the hotel, where we sat around a table in the downstairs restaurant and ordered cocktails from the bar. One of my favorite young men with WS wandered by, and he beamed when we waved at him. He joined us at our table. We ordered him dessert as he ducked to avoid his father, who was craning his neck looking for him as he cruised the lobby. I did not have a chance to talk to this young man at length during the convention, but he was obviously a very happy person, which made me smile and drew me into his presence many times. I was surprised to find that our discussion eventually stalled on the topic of vacuum cleaners, an apparent obsession of his, and we discussed canister vacuums and suction. He was very pleasant to talk to, however, and he told us his desire to eventually own a top of the line Oreck vacuum cleaner. He then shared his excitement regarding his plans to ride a real fire truck for his birthday. I smiled, but my heart began to ache.

He was turning 30.

My mother eventually made the first move to leave. For some reason, everything I feared had suddenly become visible inside of the precious person sitting across from me. The anxiety. The difficulty with social skills. The obsessions. Even some manipulation. I shook his hand and told him we enjoyed his company, but he expressed his annoyance at the fact we did not buy him dinner and were leaving so quickly. I fought off the guilt I felt and the urge to fix everything, politely ended the conversation, and turned my back. I quickly asked my father to take Erik back up to the room in the elevator. I even missed the opportunity to say goodbye to my little brother and his wife. Instead, we seemed to scatter, and I went directly to my mother's side.

I looked at her and said as nonchalantly as possible, "Well, that was pretty hard."

She said, "You think?!"

With that, she validated all of the agonizing ache that had settled into my chest.

Her hand found mine as we found the familiar, nondescript metal door that hid the stairs. We walked up seven flights, hand in hand, as we cried hard and washed from us all of the emotions that had been suppressed for days under our smiles. I knew that there was no stopping it this time. Actually, it was a relief to see somebody else cry for once.

When we arrived in the room I went straight to that Project Linus blanket lying on my bed and crawled underneath it, pulling it tight around me, crying harder than I think I ever have in my life. Emotion seemed to come from me with such violent force that I felt as if I was going to die in the process. I physically HURT. My mother comforted me for just the right amount of time, said just the words I needed to hear and nothing more, and then left me alone, confirming she knows me and my heart very well. The door shut behind her, and I found myself only sobbing harder. I heard those voices that have been silent for so many months in my head begin their chatter, perfectly clear above my pathetic bawling.

There is no end in sight to Williams syndrome.

Your baby never has been and never will be normal.

People are going to call your child a retard.

Your child will always be childlike.

There is no rest for you.

No relief from this agony and perpetual worry.


By the time I was no longer alone, I had pulled myself together, for the most part. The had tears dried, the voices had ceased, and we all got settled for the night. I dozed off and on, despite taking something to help me sleep and put me out of my misery. By the time the alarm sounded and we had to drag our belongings downstairs for our trip to the airport, I felt as if I had slept mere minutes.

But we were finally going home.

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Blogger Lizard Eater said...

Though I haven't lived your life, I know that cry, that sobbing. That pain that you're not entirely sure you can live through.

And the scene of you and your mother climbing the stairs together, crying ... I'm sure it was excruciating. But beautiful, in terms of the love that united you.

I'm sorry.

7:20 PM  
Blogger jbgrinch said...

I often hear those voices, and another that asks me if it was right of me to bring a child with issues into my family by choice. adopting a sister for suzi that may never be fully able to hold her own in the world. I dont know and Ill never know. I just know that Ill cry about it many more time in what is left of my life.

6:39 AM  
Blogger Katie said...

The lyrics to "Fix You" by Coldplay enter my head at moments like these, reading that Nancy, the tears came streaming down my face too and i wish i could wrap my arms around you, i am so glad your mother could be there for you when you needed her, just as you will be for Eric.

5:55 PM  
Blogger Heather said...

So glad you and your Mom had eachother at that moment. Good hearty cries are good for your soul. xoxo, Heather

5:44 AM  
Blogger Every minute counts.... said...

It is a very emotional journey but one that I think validates your fears, hopes, anxieties all in one. It does get better the more you can process it all and work through all those emotions. It is a mourning process and don't let anyone tell you any different.


6:57 AM  
Blogger ~Deb said...

It must have weighed heavy speaking to your favorite young man with WS, as he kept on about the vacuum stories---my heart felt it as I was reading it. But, I will say that through all your struggles and the fear and anxiety of the future, it's comforting to know that your mother's heart is parallel to yours; in sync with yours, which in itself must be a wonderful feeling to know someone else is on your page too.

6:58 AM  
Blogger camille said...

Whew, that was hard to read.  I know those same thoughts, you just write them down so much more succinctly then I do. You're gifted!
I'm so proud of you for going to the convention and facing those fears. That's a huge accomplishment.
I'm glad your mom was there for you too. I've had moments like that with my mom too, and at times it feels like she is the person I've had the most emotional connection with regarding the future. She feels it like I do. It hurts, we cry, and we go on.
Thinking of you :)

10:54 AM  

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