when a book and life collide

In my bloggy absence of late, our crew successfully drove to and from Connecticut, and when I say successfully, I of course mean that all three children were allowed to remain in the vehicle as opposed to being deposited somewhere along the NJ Turnpike. I also tried my darnedest to catch up on some reading and reviewing, so I hope to be able to share some review links with you soon. But one book in particular has really stuck with me, and I found my timing in reading it to be more than a bit poignant.

Karl Taro Greenfeld's memoir Boy Alone, has been weighing heavy in my mind since I finished it last week. You can read my very-mini-review over there to the right, my "official" review on 5M4B, or better yet, click the link and get a copy of this MUST READ book for yourself. (Or supporting your local library is always a great option, too, of course.) I have written about my own family's experience with my sister who has mental retardation before, and I'm not sure that I can be much more articulate about it this time than in my last feeble attempt. But let me say that I highlighted the crap out of Greenfeld's book, since he hit on emotion after emotion that I could relate to, remembering feelings from my childhood and adulthood, especially the ones that are often deemed simply too unpleasant to share with anyone else. Suffice it to say that from a fellow sibling's perspective, this book hits the nail on the head. Hard.

And then, during our few days visit, I had the opportunity to visit with my sister at the group home where she lives. A visit to my sister's is always fraught with questions and potential issues-- What type of mood will she be in? Will she remain calm, or will her emotions rise out of her control? Will she become aggressive or violent, or will we be able to stay for a little while to actually visit? Do we have the required greeting card to offer so as to try to get on her good side? (Oh yes, you must have a greeting card to present at the beginning of the visit, or apparently things can get pretty ugly, pretty quick.) With cards in hand, my dad, JAM and I made the trip, even showing up at her house before she returned from a dental visit, allowing us a chance to chat with a staff member whom I had not met before. (Apparently, he has been there for just about a year, and as things often go, he is considering moving out of the area, which of course goes along with the fact that he seems to be a great guy for this incredibly challenging job.)

I am happy to report that we had a lovely visit. Yes, there was lots of crying on her part, which if I weren't so used to it, probably would have made a person very uncomfortable. Even with this intensely emotional tone, she stayed in control and responded well to comfort from us and the previously mentioned staff member. (The other one on duty that afternoon... not so much. Needless to say, he was more the type to stick in this job for years, never quite fully grasping the whole compassion thing...) I found myself looking at my sister with somewhat new eyes since just finishing Boy Alone, noticing in greater detail the way she looked, especially the expressions she made as we engaged in a mostly one-sided conversation. It has always been so difficult to try to determine what's going on in her mind... I've always wondered, how much does she really understand of this undeniably crap hand she was dealt? What is the depth of her thoughts, and how aware is she of the discrepancy of our lives-- two sisters, born of the same parents, raised together but living lives of completely different scopes. Beyond the guilt that I believe I will always carry for being the "normal" sister, I am weighed down with an uncertainty about my relationship with her. I live far away, and our phone calls never progress beyond me asking a series of pretty much the same questions each week (How are you doing? Have you done any fun things lately? Did you go shopping this week?) and her providing pretty much the same answers each week (I don't know. I don't know. Yes.), so how much of a relationship is really there?

Before she arrived home, one of her housemates (there are two other men who live at the house, both coincidentally with the same first name, and both older than my sister), who has significantly less verbal ability than my sister, made his daily phone call to his mother. My dad told me that his mom is in her 70's, still works at a local hospital, and takes him home with her every weekend. She was on speaker phone while they talked, so we overheard their conversation, which was also most definitely one-sided. Mom asked questions as well, but also just talked to him about her day, including a story about an event at the hospital, and he mostly grunted "Mama!" in a clearly loving and happy tone. In response, her tone never wavered in its joyfulness and I couldn't help but tear up as we sat in the other room as unwitting eavesdroppers.

The love that one has for one's children is immeasurable, and this was demonstrated in full force in this overheard conversation, but unfortunately, life has a way of complicating matters at times. Just as in Boy Alone, there are definitely situations that make it difficult to care for a disabled family member, and the emotions that accompany a life like this are not always easy to articulate. Greenfeld has gotten some flak in the little bit of media coverage that I've heard and read after his book was released earlier this year, but I've got to say that unless you've lived this life, you just can't imagine the possible range of feelings that come along.

And as far as my visit with my sister goes, I tried to soak in the moments as best I could. We get up to CT about once or twice a year to see my parents, so these visits with her are few and far between. I kissed her on the cheek, I held her in a hug for as long as I could (while also trying to be very observant of any potential quick move on her part since she can be prone to physical outbursts in response to intense emotions), and I just tried to be as accepting as possible about the relationship that we have. While I will never experience a typical sibling relationship, I have to figure out a way to find peace with the one that I do have.

And, I'll be sending out a greeting card in the mail tomorrow. That's what a sister should do.

Since I forgot to take out the camera during this year's visit (and my mom with her permenantly attached-to-her-hip camera wasn't with us), I'll have to settle for a pic from last year.

Humbly yours,