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An Unquenchable Thirst for Love: The Paradox of Living with Williams Syndrome

by Renée Canada

Imagine being driven by the desire for connection and love, yet finding yourself nearly incapable of sustaining either. Some of us struggling single folks might relate to this feeling in some bittersweet way. Yet for those born with the rare genetic disorder, Williams Syndrome, this is not the material for self-deprecating, bitingly humorous blogs or heartbreak-with-a-happy-ending Hollywood movies. A recent piece by NPR explored how people with WS, who thrive on social connection, unfortunately often find it nearly impossible to develop and sustain close relationships. 

Williams Syndrome (WS) is caused by a deletion of approximately 26 genes on a sole chromosome. While this results in mental retardation, development delay, and cardiovascular problems, there are positive attributes as well. People with WS tend to have a cheery demeanor, great empathy and ease with strangers. However, sometimes this open trust for others can lead to sticky situations; they might climb into the car of a complete stranger or walk over to friendly looking grandmother of a classmate and ask, “Can I go home with you?” 

On a more positive angle on not fearing strangers, a recent study published in the journal Current Biology found that children with WS showed no racial bias in social-bias experiments. Kids were asked to look at pictures of people of assorted ethnicities and genders and to assign negative or positive storylines to each picture. As predicted, the control group preferred those assumed to be of their own ethnic background and gender. Kids with WS had no ethnic preference, though gender was still a factor.

In addition to their love for others, people with WS tend to display a love and affinity of music, often possessing perfect pitch. However, they suffer from hyperacusis, which makes them extremely sensitive to noise at certain frequencies. Sadly, by age 30, the majority of individuals with WS have a form of moderate hearing loss.

Those with WS often have striking verbal abilities, particularly in short-term memory, syntax, and concrete vocabulary. However, they suffer in visuospatial construction (the skills to copy patterns, draw or write). Abstract/relational vocabulary is more limited.

Also due to spatial relationship deficiencies, those with WS have difficulties navigating from place to place. It is hard for them to organize and plan things. Plus, they find it extremely hard to concentrate and focus for sustained periods of time. As a result, as an adult, they find it tough to hold down a job, and perhaps, more importantly, fulfill perhaps their greatest desire: to form deep, interpersonal relationships.

Most with WS are very socially isolated. They often suffer from severe anxiety. An inability to pick up on the subtle social cues makes it a challenge to generate meaningful conversation and lasting relationships.

I can’t help but once again relate back to those of us single in the dating world. Often we can recognize our own worth, the strengths that we can bring to another person’s life, and are aware of our great capacity to give and receive love. Yet we’re constantly throwing ourselves pity parties when a suitor rejects us after one date, when we suffer the sting of an unrequited crush, or when a loving relationship dies right before our eyes, seemingly without warning. In spite of all the heartache and disappointments we live through, somehow, eventually, we manage to dust ourselves off, get back on our feet, and get back out there in our search for love.

But what of the folks with WS who, despite all their efforts, are literally handicapped from achieving their greatest desire for social acceptance and companionship? As new social training programs develop for people with WS, it is my hope that one day they too might grow closer to finding the love they so desperately seek.

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Celebrating the Caregiving Mother

by Renée Canada

There are the mothers who ignore the claims that you are fine, despite the out-of-nowhere, repeated falls you’ve just taken and seizure-like jerks in your body, and insist on taking to you to the ER. There are the mothers who are by your side, night and day, during the scariest week of your life in the hospital when your body has decided quite violently that you are no longer its boss and that something else is pulling the strings. There are the mothers who take your calls when you can no longer speak. They literally become your voice, acting as fierce warriors on your behalf when the system is failing you.

There are the mothers (and fathers) who let you sleep in your parents’ bed for weeks until you are stable enough to sleep on your own. They rearrange their work schedule to telecommute full-time from home so they can watch you. They bring you your meals on trays and make sure you have all your pills and vitamins. They work by your side, taking a break to watch a mutual favorite show daily with you.

They tenderly give you a bath, and wash and comb your hair, while still respecting your privacy as a grown woman. They comfort you when you are inconsolable. They soothe you as only a mother can, holding you close, stroking your face with their soft, cool hands that seem to wash all your worries away in an instant.

There are the mothers who accompany you to every single doctor’s appointment. There are the mothers who advocate on your behalf when your voice or your spirit fails you. They remember the things you’d be trying so hard not to forget about crucial details of your experiences. 

There are the mothers and fathers desperate to do anything they can to help their baby child. They have hushed conversations at night about you, worrying, praying, and sometimes crying. They are looking for answers. You are praying not for yourself, but for your parents. They don't deserve to have to go through this, to have to helplessly watch their child suffer again and again with no promise of relief, no end in sight. This should be their time in life, but instead they find themselves caregivers of their adult child.

There are mothers who don’t allow a bad period of medical episode spoil the end of a beautiful Mother’s Day. They soften your fall. They cradle you until you are able to come back to, when you can once again stand. There are mothers who gracefully receive a card with these additional heartfelt words added: Thank you for all the love and support you've given, for being by my side and seeing me through my most difficult days. I couldn't do any of this without you, Mom. I love you so very much.

These mothers, more precious than gold, say: “There's no place I'd rather be than by your side."

Joseph Brieno, Jr.(Jay), a soldier left paralyzed, brain-damaged and blind after being shot in the back of the head in a Baghdad marketplace, has one of these mothers. Eve, has transformed their home into an intensive care unit, grooming him, exercising his limbs, clearing his lungs of liquid. She could have put Jay into a nursing home, but she felt he would receive better care from someone who loves him: his mother. "A bullet in Baghad, a son's need, a mother's love" tells more of Eve's incredible devotion to her son.

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Flying with a Wheelchair

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Protected: When Hopes Take Flight

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Brain Wonders: Girl wakes from coma speaking new language

by Renée Canada

The brain is a fascinating and complex organ. Not only is it in charge of our body’s breathing, heart rate, and other autonomic functions, but it controls our body’s balance, posture, and coordination of movement including for vision. Even more fascinating is its role in mood, reasoning, decision-making, and abstract thought.

Despite the protection of a hard skull, the brain is a delicate organ, subject to deficiencies and injury. Some of you might have read neurologist Oliver Sack’s The Man Who Mistook His Wife for a Hat, which described case histories of patients who had altered brain functions, many of which resulted in unusual phenomena such as spontaneous reminiscences as altered perceptions. In one case, for example, “The Lost Mariner”, due to a brain disorder caused by the lack of vitamin B1, lost the ability to form new memories. Although he is living in the late ’70s/early ’80s, he believes it is 1945 and can remember nothing of his life since the end of WWII. Another patient has a visual impairment where he cannot recognize ordinary objects like a flower, a glove, or human faces. He tries to shake hands with a parking meter.

However, the brain is often capable of adapting to difficult circumstances. For example, studies of children have shown that if the left hemisphere of the brain, often the center of specialized language abilities, is damaged in a child, the child may develop language in the right hemisphere instead. The younger the child, the better the recovery.

Some of you might have heard of Foreign Accent Syndrome. This extremely rare brain disorder can result from a stroke or head injury. CindyLou Romberg suffered a depressed skull fracture after falling out of a moving truck. After a chiropractic adjustment, despite never having left her small town in Washington state, she began speaking with a Russian accent, though she sometimes also slips into replacing her w’s with v’s like a Swede. After a stroke, Linda Walker from Newcastle, UK, lost her Geordie accent and began speaking alternately with a Jamaican, French Canadian, Italian, or Slovak accent.

So, taking it one step further, the latest news of a Croatian teenager waking from a coma speaking fluent German didn’t surprise me at all. I find it fascinating what the brain will retain or further develop, even as we age. The mind is a terrible thing to take for granted, and hearing stories like this make me cherish and want to expand and develop my mind to the fullest possible. Feel free to comment with any links to sites that encourage exercising your brain.

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Tucson School Say Adiós to Oreos

by Renée Canada

I remember the days of high school lunches consisting purely of those Friendly Sundae Cups. As an high honor roll student all through sophomore year, I would just flash my proudly earned “golden” card, which was basically a free pass to goodies at the school store and treats at lunch, and voila, I would have a Reese’s Peanut Butter Cup Sundae in hand. I felt like I was doing something illicit that I would later regret. Have you seen how many calories are in that small little cup? I had: 430, with 25g of fat, 29g of sugars. I knew I was more than tripling my caloric intake from my normal daily lunches of bologna and cheese sandwich, with carrots or grapes if I was lucky.

I remember gazing longingly at my friends’ lunches in middle school. Tresa’s mother always tucked little notes into her lunches which always included cookies or some such goodies, in addition to her peanut butter and jelly sandwich, on white bread, cut up in different shapes. My best friend Jenn, who always had ham and cheese sandwiches with mustard on white bread, usually had chips and/or a cookie as well. She never finished her entire meal.

So I with the measly baloney and cheese with mayo sandwiches on wheat bread always sniffed around like a vulture when I was done with my meals, waiting for everyone at the table to proclaim they were done. An apple would be abandoned. I’d eat it. Half a bag of chips would lay on the table ignored. I’d eat that too. And if someone had peanut butter and fluff, the biggest taboo in sandwiches, you can bet I’d figure out some way to trade up for that–usually with someone else’s leftovers.

Today, I can no longer stomach half the food I so hungrily scavenged from my lunch pals. I prefer my oatmeal with almond milk, apples, raisins and walnuts. My wheat bread with organic turkey, cheese, lettuce, tomato, and mustard for lunch. Hey, I even drink water 24/7, and I actually love it. I hardly ever drink soda, and I look for juice that actually has, you know, juice as its main ingredient. If we had a Whole Foods in town, I’d be pouring way too much money each week buying my groceries there. When I see food or beverages with high fructose corn syrup in it, I cast it off as if it had the devil’s handprint on it.

So reading today’s story about a Tucson elementary school’s decision to put all processed foods on their “no list” made me want to give someone a high-five, especially in the face of this nation’s obesity epidemic. With lunch meat and flavored yogurt on the no-food list, one wonders what children can consume. Teachers trade quesadillas made with white flour tortillas with whole wheat wraps topped with peanut butter and honey, which to be honest, sounds like an appetizing alternative. School Director and Founder Nancy Aiken may have a point, according to the article: “If all U.S. families allowed her school’s food rules…child obesity would be a rare problem.”

The only thing that makes is sad is thinking about birthdays at Children’s Success Academy: there will be no birthday cupcakes or cake for these kids. There is value in moderation or creativity with alternative ingredients. One can hardly put a candle on fruit or nuts, which is the school director’s suggested birthday “dessert.” Perhaps I should email the recipe to lip-smacking gluten-free chocolate cupcakes with no sugar or high-fructose corn syrup to Aiken. I think her students would thank me.

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Listening To Your Body

by Renée Canada

With the multiple, daily episodes making stone slabs out of my muscles, I decided it was time to start treating my body with more love. A couple weeks ago, I got my first massage in about two years (had it really been that long?) My wonderful bodyworker Deanna, who has grown used to the ebbs and flows of my body over the more than six years that I’ve been seeing her, was of course concerned by the changes going on with my health.

Deanna, a true master of energy healing, began the massage, as always, by cradling the sacrum, or tailbone, and moving her hands lightly over my lower body. “I’m feeling a really deep spasm in your sacrum,” she said. “Do you feel anything–” She broke off when she looked up at my head and saw my face contorting into the painful twisting of my jaw and cheek muscle contractions. “Wow,” she said. “I didn’t even realize you were going through an episode until I looked up at your face. But I could feel both your legs strongly pulling to the left.”

In just a few moments, she seemed to have figured out the connection between my facial muscle contortions and the weakness of the tailbone I sometimes feel that leads to total loss of strength in my legs, resulting in me either walking the funky chicken or falling in a heap on the floor. For several days after the massage, I felt as if my muscles had loosened up a bit and even when I had the episodes, I was able to release out of them more quickly and much less painfully.

Feeling energized and armed with a new sense of hope after realizing once again I would have to look outside Western medicine for ways to treat this mysterious disorder, I started getting back into doing more hard-core yoga. I’ve been stretching and strengthening my body along with Namaste Yoga on FitTV.

Now I usually detest doing yoga workouts along with a video. The teachers always go too fast, assuming you know all the poses from the start, and it feels like their sole purpose is to show off, not to help you experience any of the benefits of yoga for yourself. Namaste Yoga felt different from day one. The lead instructor started off slowly enough that you could manipulate your body into a posture before moving into the next one. Once she felt you had mastered a sequence, then she moved faster and/or added more challenging poses.

Instead of feeling defeated by yoga, I have been feeling rejuvenated and strengthened by it. I always find myself looking forward to the next episode’s challenges. While it shouldn’t come as a surprise to me especially, it’s been both a boost to my mental attitude as well as a wonderful way to help my body cope and relax more when facing the physical tension of an episode. I am constantly reminding myself: Don’t forget to breathe.

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