About Me

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Las Vegas, Nevada, United States
"No, really!"

My Favorite Bit of Paper Cup Philosophy

The Way I See It #76

The irony of commitment is that it's deeply liberating - in work, in play, in love. The act frees you from the tyranny of your internal critic, from the fear that likes to dress itself up and parade around as rational hesitation. To commit is to remove your head as the barrier to your life.

Thursday, February 10, 2011

Where Have All the Flowers Gone?

My younger brother and only sibling turned 55 in January, which occasion caused me to travel many of those paths I don't like to revisit. A brother's birthday may not seem unusual to anyone else, but my brother's 55th is remarkable in that people like him do not typically live beyond preteen age. My brother who has never walked, never talked, may or may not be able to see in the way that others of us are served by our eyes. He did not have the human suckling instinct at birth and had to be fed in an unusual way before tube feedings became his norm. He does not recognize us or anyone else. He is physically pristine and beautiful in a way that I am not ~ long, graceful fingers and hands with no sunspots, scars or burn marks. You see, his features, limbs, organs, skin, brain have not been used in the way most of us are called upon to use our attributes. He can hear, I am certain. When one stands beside his bed and speaks, his head turns in the appropriate direction.

My very young parents had about a 90-day "honeymoon" after Gary was born, seemingly normal. My troubled mother was excited that now she would "have one" because by age 3, I was already firmly my father's child. I desperately needed a sibling, too, although that would not become so obvious for awhile. A lot of family energy seemed to hang on his arrival. Gary gained weight, grew longer ("taller"), and there are photos of him propped up on his elbows, holding his heavy head up on his neck under his own power . . . like all babies do, right? The only warning bell tolling was that sucking thing.

The condition revealed itself on Easter morning when my mother went to Gary's crib to put a bonnet on his head before we left for Mass. He was having a seizure. There began about 5 years of doctors, surgeons, travels to more doctors and surgeons. Neurosurgery in the day was tantamount to opening up the cranium and having a little look/poke inside. Never were my parents to hear a decisive diagnosis, hanging their hats on the various tentative causes of "a virus" and other shots in the dark for nearly 20 years. Finally, Gary became quite large compared to my tiny mother. He had to be lifted - dead weight, from a crib set at a low position - for all forms of care. He developed additional physical illnesses. When hopes for a miracle ended, it was decided that placement in the state hospital system would be the best for everyone. It was, for Gary, likely. I am less certain about the other three of us. But we'll never know.

I have seen my brother in person fewer than a handful of times since that day in 1960. I was not allowed (by the hospital) to visit until I was 18. No, they were not allowed to bring him out to the car so I could see him. I might have an illness he could carry back in. At Christmas and other holidays, came handmade "art projects" containing Gary's picture. He resided with many other people who were not as damaged as he is. They made cards and gifts for their families. Some kind person always made sure there was a Santa birdhouse with Gary's picture in the doorway to send to the Morgan home. My mother and Granny never missed one of Gary's annual reviews with the doctors and nurses. Whereas some of the patients had progressed to "walking independently about 15% of the time", Gary's reviews were more of the "full bath every other day, sponge bath every other day, hair cut once per month, tube feeding site unremarkable" variety. My mother actually enjoyed going to these events. Granny made hundreds of lap-sized quilts for "Gary's friends" over the years.

My very young parents missed the mark with my upbringing in many ways, but they managed to instill in me compassion, love and pride in Gary. While almost anything out of the ordinary can mortify me (still today), I have never paled over a loud seizure in public or the noises he sometimes makes that defy description or definition. How can one love someone/something that gives no apparent love in return? I don't know the answer. I just know it can be. When I turned 18, I was taken to the hospital for Gary's next review. He was 15. It had been 10 years since I had seen him. Granny and my mother watched me closely. I'd been known to faint or collapse over certain things in life. But no. I was a hard-boiled little hippie chick. I looked at him. I held his hand awhile. I marveled at his complexion. I envied his deep brown eyes. I got the blue ones. While waiting for Gary to become "available" for our visit, I'd enjoyed (with only a slight amount of fear, sadness and a little revulsion) watching armies of other damaged, broken human beings industriously doing their work. Patients, ambulatory and not, were assigned to do whatever they could manage. I saw clean diapers being taken from a bin as large as a room and painstakingly folded - in some cases, it took 10 minutes per diaper - the same floor tiles being swept over and over and over again. Decades later, as a union representative, I never achieved anything that made workers as happy and productive as those sweet innocents folding and sweeping.

In the mid-1970s, my mother got a telegram from the hospital. "Please call immediately." A group of residents, interns and medical students had been touring Gary's ward. A young resident, knowledgeable about the most recent findings, thought he recognized some symptoms and asked to examine Gary more thoroughly. The tests were run and the conclusion indisputable. A genetic disease, only recently scientifically identified. "Is Gary's sister still living?" Boy, howdy! I was living with Ex, hoping to have 6 children, all born at home without pain medication in the good hippie way. Testing my mother and me took about a year. It was unpleasant in every respect. My father danced. We didn't understand the dancing. Ultimately, he refused to be tested. I imagine he did not want to risk being labeled "the culprit". He has not survived that refusal unscathed, I must say. And although only 75% of our family had been tested, I was told that I could not pass on the disease. I didn't have it, and therefore, I couldn't give it to my own children. However, erring on the side of conservatism, my genetic counselor suggested I have one normal child and call it a day. OK.We didn't know and wouldn't surmise for awhile that I was infertile. Conceiving the child I finally delivered took many more years. Early in the pregnancy, we went through another round of genetic counseling. Many years had passed. My newer counselor was even more solid with "you don't have it, you can't pass it on" than the counselors of two decades earlier. I wondered if the condition was detectable through the amniocentesis I intended to have. No, it wasn't and still isn't today. When Amber was born, as perfect a specimen as anyone could hope for, I called the genetic counselor. "Do you want to examine and test her?" She didn't want to check Amber. You see, I didn't have the disease and, therefore, I couldn't pass it on.

On later visits with Gary, I was not the stoic I had pretended to be at age 18. I engaged in an impulsive act that startled my mother, every single time. You see, I'd tear off Gary's socks and spread his fingers like I was trying to break a wishbone. "What the heezy?" "Checking between his fingers and toes, Ma!" I wanted to inspect the effectiveness of the alternating full baths and sponge baths. He was always, but always, spotlessly clean. I never entered his room, or left it, without sobbing about what could have been. Not only for my brother and me, but for all of the earth angels in that place.

So Saturday evening, a group of us were laughing and talking and screaming at the TV. I'd been pulled in to some pre-Super Bowl atrocity featuring Chrissie Hynde and Faith Hill as a duet, singing one another's songs. To use my daughter's favorite comment, it was just wrong, but I couldn't leave it alone. Oh, my, the kicks on Faith's feet. Oh, my, her red leggings."Jeez, change that, Les!" No. I couldn't. So a commercial comes on. It's advertising a TV special dedicated to the 100th birthday of St. Ronald Reagan. In the background, strains of the Stones' Brown Sugar was playing and that pissed me off just a little. I'm sure Big Band music would be more appropriate to St. Ronald. I doubt he would recognize Brown Sugar. On a number of blogs as the Reagan canonization approached, harsh debate ensued. The hard question: on what should we spend our (too little) money? "Military might!" "Social programs!" "Education!" "Health and welfare!"

All right, everyone has his or her opinion. Military might doesn't tantalize me. In fact . . . well. Nor do I want marauding enemies to breach the shores of our homeland. I do believe we have a responsibility to take care of those who cannot take care of themselves. There's my stance, as bland as I can make it. Seeing some of the film footage for Reagan's special made me think of "his" California where I lived most of my life and once loved. It has been so decimated in every way. This was brought home to me as I thought about my brother. The vast hospital campus once provided health care and purpose for thousands of patients (peaking at 2,700 residents in 1967). Today, "Gary's friends" number 20. They've been moved to a small building. These are the most damaged of the damaged. The others are treated on an outpatient basis or they were simply turned loose when it was determined the money should be used for other things. Where did they go? Unfortunately, I think I know. I've done enough volunteer work to recognize that some street people are not "just" homeless. They're ill. They can't take care of themselves. There are too many of them. My brother is one of the lucky ones.

In my ears right now: You already knew it was a favorite song, but I've never had any Willie in it!


  1. Amazing post Leslie, Thanks so much for sharing such a poignant and painful backdrop to your experience as an older sibling which certainly must have shaped your outlook in many ways.

    I sat in the Las Vegas airport and thought of you yesterday on the way to visit my sister in NC.
    xoxo Kim

  2. @ Kim ~ One of the phrases I've always used is that a retarded child casts a long shadow across the whole family. I've really never landed on anything like peace about Gary. It's just always a tragic mystery I don't muddle through.

    I wish I'd known you were going to be in Las Vegas! I'd have trundled myself over there to share a meal and chat if your layover was long enough.

  3. This is such a sad story, Les, heart wrenching for you all, for your young parents and especially for you. The best and the worst of such things as sibling rivalry is hard to cope with at the best of times but when the sibling is so damaged, it's impossible to feel all the feelings you might normally feel. Guilt creeps in, resentment, mixed in with all that love. So sad. Thanks Les. This is beautifully written.

  4. @ Elisabeth ~ I'm so pleased you popped up. I have wanted to write about Gary for a long time, but I never could satisfy myself with the words. You hit it about all the feelings - all the jumbled emotions tinged with regret, anger, resentment, and the wonder of what could have been. My brother may not have spent his life in my presence, but he has surely been a presence in my life. Thank you for commenting.

  5. Leslie such an honest and moving story of your brother Gary and I guess it's because of him that you are the person you are now....i worked awhile in a respite home for babies and children and young people up to 19 who had varying degrees of disabilities .....it was a place of joy and the most humbling experience of my life ......I am not great with words but I just wanted to say that it is a great priviledge to care for others ..i found the children had great spirits as Gary must have to have reached his 55th birthday...I am 55 so this story also touched me on another level....I hope this made sense....YOu are special because Gary is...thank you for sharing this story with us
    Lorna xxx

  6. @ Artymess ~ I'm glad you commented, Lorna. You are one of those giving, huge-hearted human beings filled with kindness and caring. But we already knew that about you. And I'd submit that you ARE great with words, because look at those you sent me. Thank you. You're right, too. I am the me I am because he is the he that he is.

    Ironically, despite a close connection with a retarded person, I do not have your gift of caretaking them. I've known several damaged people in my life, some of whom wanted to be close with me. I can never be mean, but I'm often so uncomfortable it is literally all I can do not to run away screaming. But human beings keep growing all their lives, right? I try. I try.

  7. Oh goodness--the poem on your page by W.S. Merwin is so fitting. Thanks for sharing this, Leslie. You dug deep--not an easy thing to do.

  8. Les - I'm in Midway at my cabin, fixing the furnace and de-icing the toilet. I went to Greg's house and read this and wrote a lengthy comment, but it was a really weak WiFi connection (I was 'borrowing' it from a Bed & Breakfast several miles away) so it didn't go through (or rather, it was taking so long to load, I gave up).

    What I said was - What an excellent piece of writing. I was totally captivated and engrossed with the details of what Gary's life must be like, and yours in connection to it. I agonized over the possibility that he could have some cognition and be frozen in his body. Please tell me this isn't so.

    I'm sitting here in the local market which has WiFi so I'm trying to control my emotions over Willy's Time. Who is Lucinda?

    Thanks for a great post.

  9. Difficult to read, not because it's written poorly, just the opposite, it's written beautifully. A lesser writer would have bathed it in bathos. It's the unflincing honesty that makes it difficult.

    As for the Gipper, I give him credit for recognizing that Gorbechev was a true reformer, something no one else in the right-wing recognized at the time (in fact, he was denounced by many conservatives back then for breaking bread with the Rooskies, something that's forgotten now) As for Reagan's domestic policies, well, I believe they eventually led us to the mess we currently find ourselves in.

    Um, I kind of like Chrissie Hynde. That's not wrong, is it?

  10. @ Doozy ~ I thought you'd enjoy the poem clip - such imagery, huh? As for Gary, yes. I dug. And dug some more. And dug. I needed to do that. I delivered it up as well I as could render it.

  11. @ Kass ~ I'm sorry. It wasn't my wish to have anyone sting too badly. I strove for balance. Don't agonize about Gary, Kass. He has no cognition at all. I promise you this is true.

    Let's see:Lucinda Williams is among my favorite artists and Over Time is HER song, not Willie's. Elvis Costello named it as one of the best songs ever, and I'd have to agree. I hold it close to my heart.

    I wish I were at the cabin in Midway helping. Actually I just returned home from Utah not half an hour ago! I'm glad you commented. I wondered where you were.

  12. @ Kirk ~ Oh, you kicked me hard and I had to walk around outside a few minutes. Thank you for your words. I was so driven to write about him. I was so concerned about sounding pitiful or wah-wah. And guess what (for better or worse)? I have more life to tell in the near future!

    You're right, Kirk, as I usually say about your political comments. That asshole Reagan gets Brown Sugar and sainthood. We're all trying to figure out what in HELL we're going to do about our world. Blecchhh.

    And, no, my friend - liking Chrissie is RIGHT.

  13. Les - How could you have been in Utah and not come to see me? Were you in St. George? I would love some company as I putter around my cabin.

  14. @ Kassie~ WAY down south, Honey, and very spur of the moment. Believe me, had I been coming anywhere near, I would have missed no opportunity! I'm going to get to that cabin some day! I'm a good putterer, too.

  15. Read this and couldn't comment for a while. You're an honest and brave woman, Les.

  16. @ Rachel ~ Thank you, Girlfriend. I'm not sure I'd agree with that assessment. I just deal with what I'm dealt and stumble along. I'm glad you commented.