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My Life Is A Reality Show

November 14, 2012 By

Reality show material?

Today’s prompt in the National Health Blog Post Month invites writers to describe why their lives might resemble a reality show. To be honest, it’s not much of a stretch to imagine my life as a reality show, especially when you consider the kind of stuff they’re putting on TV these days. They have everything from teen pregnancy to Mafia ex-wives to pig hunting to people getting simple trivia questions horribly wrong as they attempt to not have their cars repossessed. Several months ago, there was a show – an entire hour-long time-slot – devoted to a discussion about cricket poo.

I’m not even kidding.

Something tells me that a show about my life would be infinitely more entertaining than a show about cricket poo, and if people were watching that, then my show would be an absolute hit.

Let’s take a look at the cast of characters:

The Autie

Like many kids with autism, George is a complex little fella, seemingly full of contradictions. At nine, he still needs hand-on-hand assistance to brush his teeth, and yet he would probably be able to assemble a computer in three seconds flat, reminiscent of that scene in Forrest Gump where Forrest put a rifle together in record time. George has meltdowns when you least expect it, and at times when you just know there’s going to trouble, he is the picture of serenity. Every good show needs a dose of intrigue, and with George there is plenty of that.

There is also a feel-good element in watching George. Every day the kid comes out with some action or some little phrase that demonstrates the trajectory of his learning. Anyone watching would surely celebrate every little accomplishment.

The Hyperactive Neurotypical Kid

What would a reality show be without a hefty dose of drama? With James, there is plenty of that. So much that we have to be on guard against Shakespearean troupes taking him away to be in theatrical productions. He has strong opinions, and a strong sense of what he perceives to be justice, and he’s not afraid to express that.  When I tell him to put on his pyjamas, he cries bitterly and says I’m ruining his life. He threatens to run away and says he’ll never hug me again.

Five minutes later he always hugs me. Because as much as he is a drama queen, James has a big heart and a generous spirit. Only the most hard-hearted soul would not feel utterly moved at the sight of James comforting his brother.

Besides, the kid has an imagination second to none. His mind takes him to all kinds of places, and sometimes, when he feels like telling a story, he takes the rest of us right along with him.

The Dad

My husband is so weird, he could have a reality TV show all to himself. I mean, he once deliberately got into the shower with all his clothes on. He says things that sound offensive but are actually hilarious. Like the time he said my hair makes me look like Gene Simmons, or the time he said the lunch I had made him looked like gorilla puke. He has a whacky sense of humour that would have the viewers rolling on the floor with laughter.

He would also have the female viewers swooning with his sense of romance. This is a man who approached a complete stranger in a park and told her she had beautiful eyes, who many years later proposed to that same woman in a grand gesture at her citizenship ceremony. When I was in Winnipeg on business years ago, he sent me a singer. A guy with a guitar showed up at my hotel room, and sang me a song while my husband was on the other end of the phone line.

The Mom

If it’s suspense you want, I’m your girl. I’m the one who’s always rushing around in a tearing hurry, trying to complete about 37 tasks all at the same time. I juggle so much at any given time that it’s anyone guess which one I’ll drop and what the consequences will be. Viewers will watch in slight bafflement as I take multitasking to a whole new level, and they will not be able to help sniggering as my exhaustion makes me do stupid things, like put lipstick on my lashes and mascara on my lips.

Here’s the thing, though: I may have a  lot on my plate, like special needs parenting, distance running, a full-time job, commuting, the husband’s business – but I’m happy. Yes, I have my issues with depression and anxiety (which could also have a show all of their own), but I have this weird and wonderful family to keep me going.

The Set

The reality show would be filmed in my own home, and I wouldn’t be obsessively cleaning up and putting things away before the camera crew came. This is supposed to be reality, so it would have to include the ever-growing piles of paper on my desk, and the Lego all over the floor, and the discarded clothes lying around, that I swear reproduce when I’m not looking. Viewers would get a glimpse of my kitchen sink that’s always full of dishes no matter how much cleaning up I do, the holes in the drywall from where George has banged his head during meltdowns, and the unruly pile of shoes and coats by the front door.

So I have a cast and a set, and the plot is built-in to the fabric of our daily lives.

All that’s missing is a title.

Filed Under: autism, Children, family, National Health Blog Post Month, WEGO Health Tagged With: , , , , , ,
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Guest Post: Living with Marfan Syndrome

November 12, 2012 By

When my friend Maya Brown-Zimmerman first said she had Marfan Syndrome, my first thought was, “Huh?” Marfan Syndrome is not something I had ever heard of. During National Health Blog Post month, I want to put a spotlight on some health conditions that affect other people – conditions that there may not be a lot of awareness of. Marfan Syndrome seemed like a good place to start, and I am delighted to introduce you to Maya, who tells about life as a “Marf”.

I’d like to thank Kirsten for the opportunity to share my story with you here today. She’s asked me to talk about Marfan syndrome and how it affects our family.

Marfan syndrome is a rare, life-threatening connective tissue disorder. Connective tissue is basically the glue that holds your body together, so most of the body can be affected, specifically the eyes, heart and aorta, lungs, skin, bones, and dura sac (which protects your spinal cord). The most dangerous aspect of Marfan syndrome is aortic aneurysms: weak bulges in the aorta that can tear, which is life-threatening.

Some signs of Marfan syndrome include a tall (in relation to your family) stature, being thin, having long fingers, disproportionately long arms and legs, scoliosis and kyphosis, lens dislocation, a concave or protruding chest, and stretch marks that appear in odd places, like the shoulder blades. There are not outward symptoms of aortic enlargement, so it’s very important to get a thorough scan of the heart valves and entire aorta via echocardiogram, MRI, or CT scan if Marfan syndrome is suspected.

I was diagnosed when I was 8 years old. My mother observed that I appeared physically unable to complete many gross motor tasks that other kids my age had mastered, like skipping or riding a bike. She took me to the pediatrician and told him she wasn’t leaving until he figured out what was wrong. Luckily for him (and me), he did! I’ll never forget him grabbing a tape measure and silently taking measurements, then standing back and saying solemnly: “I am so sorry. I should have realized this sooner,” before sending me off to have my diagnosis confirmed by a cardiologist and geneticist.

Marfan is a dominant disorder, meaning that I knew any children my husband and I would have, had a 50% chance of inheriting Marfan from me. Our oldest son, M, is not affected (though he does have autism), and our youngest son, J, has Marfan.

J and I are affected differently. He is almost 2 and by his age, I’d already had 3 abdominal surgeries. Thankfully, he is surgery free, but he has some mild leakage in his heart valves, asthma, and some GI issues. He also had global delays early on. Now he is only delayed in speech. He has mild dysphagia too, so we thicken all of his drinks. Although he will eventually have activity restrictions in order to protect his aorta and eyes, right now nothing holds J back! He climbs the furniture, chases his brother, and dances on the coffee table. He’s going to give me grey hairs, but I love his fiery spirit.

Growing up with Marfan syndrome was difficult for me. There was very little information available at the time and as I got older, I stood out from my peers more and more. I eventually connected with other “Marfs,” and have become very involved in the greater Marfan community (we refer to ourselves as the Marfamily). Currently I run the National Marfan Foundation’s teen program and am a member of their board of directors. While it took me until my teenage years to begin attending Marfan conferences and being involved with the Marfamily, J went to his first conference at 6 months of age. I’m involved with a tight-knit of Marfan moms of children J’s age, so he has a built-in group of Marfriends that he’ll grow up knowing. Since I was diagnosed, the life expectancy for people with Marfan has nearly doubled, such that with proper diagnosis and management it’s the same as the general population. It truly is a different world for J and his friends, and I am grateful and excited for that! I now view Marfan as a blessing in may ways, and I hope to pass on this outlook to my son.

If you have questions about Marfan syndrome or related disorders, please check out the National Marfan Foundation.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and WebMD.

(Photo provided by Maya Brown-Zimmerman)

 

Filed Under: Guest Posts, Marfan Syndrome, Maya Brown-Zimmerman Tagged With: , , , ,
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Body for Life: Week 1

November 11, 2012 By

A week ago today, I started the Body for Life challenge. I completely revamped the way I eat, ditching the carb-heavy lunches from the cafeteria-style shop downstairs from my office in favour of meals brought from home, consisting primarily of lean proteins and salad. In the evenings, I started making more of an effort in the kitchen, selecting dinners based on nutritional value rather than convenience.

At the same time, I have started getting myself into something resembling an exercise routine, following my post-half-marathon hiatus.

So, how has this all gone? Has my week been a success?

Well, in terms of hard numbers, I haven’t seen as much of a change as I would have liked, but the change I have seen has been in the right direction. I have dropped two pounds, and I have lost an inch from my waist measurement. I am off to a start, so yay!

I have had a surprisingly easy time where discipline is concerned, and I believe this is the result of planning. Last Sunday night, I meticulously planned out and wrote down what the week’s meals would consist of. Once I have a written schedule, I tend to follow it quite rigourously. I have not been tempted by all of the Halloween candy in the house, nor by any of the processed junk food in grocery stores.

In fact, I have been having something approaching fun in the kitchen, as I have tried out new recipes. To my astonishment, none of my cooking experiments ended in disaster, although there are some that I clearly need to practice.

The thing that killed me was time, and this makes me realize that the obesity epidemic can, at least in part, be blamed on the fact that many people just do not have enough time to accomplish everything. I don’t care what you tell me, eating healthily is a lot more time-consuming than the alternative. When I’ve just worked a nine-hour day and spent an hour and a half commuting home, it is so tempting to just throw some processed crap into the microwave instead of taking the time to prepare something that’s actually good for you. It is so easy to blame people for the poor eating choices they make, but honestly, in this day and age it is not easy to maintain a healthy lifestyle.

Lesson learned: do more prep on Sundays to save a bit of time during the week. Even if I do that, it may take a while for me to adjust and do things as efficiently as I need to.

With Week 1 done, I am looking ahead to Week 2. The menu is planned, and I have some specific goals with regard to runs and workouts.

Check this space for another report-back next Sunday.

(Photo credit: Andy Roberts. This picture has a creative commons attribution license.)

 

Filed Under: Body for Life, Exercise, National Health Blog Post Month, Nutrition, WEGO Health Tagged With: , , , , , ,
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Autism and Oddities

November 10, 2012 By

We are a third of the way into the National Health Blog Post Month Challenge, and I have actually managed to post every day! Today’s prompt: LOL post – write about something funny.

Me and George

My son George – the one with autism – has a thing about my hair. He buries his nose deep into my hair and then gives an almighty sniff. His enjoyment of this activity is directly proportional to my absolute dislike for being on the receiving end. I can just about tolerate one or two sniffs, but when it happens on and on ad nauseum, I end up feeling so agitated that I want to rip my scalp off my head.

This morning it went on from 3:30 until 5:30. And even then it didn’t stop – indeed, the hair-sniffing was accompanied by both boys and my husband bouncing off the ceiling, telling jokes, wrestling with each other and singing funny little songs, all while I was trying to sleep. At about 7:00 I reached the point of being too wound up to sleep in spite of being utterly exhausted. I had to deposit a cheque, so I got dressed and left. I was so tired that I drove to the wrong bank’s ATM. Not only that – I actually inserted my card into the machine, and it only when I was presented with an unfamiliar-looking PIN entry screen that I realized something was not quite right.

Kids with autism are known for having quirky little habits, like George’s hair-sniffing thing. While the hair-sniffing has been going on for some time, it has recently been paired with him blowing in my face. Sniff-blow. Sniff-blow. Sniff-sniff-blow.

Dear Lord, give me strength.

My friend Lesa’s son is another kid who has both autism and a strange habit. He is into elbows. He will grab the skin of someone’s elbow and twist it, and if the recipient is clued-in enough to stop him on time, he satisfies himself with a “drive-by lick”. It drives his parents crazy but at the same time makes them chuckle, just as George’s hair-sniffing thing tickles me just a tiny bit. Because as annoying as these habits may be, they are kind of funny.

Amy, another fellow autism mom, describes how her son watches movies. Instead of watching a DVD from beginning to end like most of us, he gets stuck on specific scenes, like a cat falling out of a tree, and replays them over and over. His family goes up the wall, thinking, “Just play the damn movie, already!” but the sound of his laughter makes them incredibly happy.

I can identify with that. George has a habit of repeatedly saying, “Daddy loves Albert!”, and sometimes it gets a bit much, but it is such a small price to pay for the laughter that follows. Just for the record, I have no idea who Albert is.

It is easy to believe that these little quirks are a result of autism, but is that really the case? Or do we all have our odd mannerisms? Granted, most people don’t go around sniffing hair or licking elbows, but perhaps we all have our “thing”. I mean, whenever I walk anywhere, the number of steps I take has to be a multiple of four. Whether I’m walking to the bathroom, down the street or around the block, I mentally count off my steps in fours. I have mastered the art of doing this while having a conversation. When I get to my destination, I will take one, two or three steps in place if necessary, just to get to my multiple of four.

Do you explain away your child’s odd habits with autism or some other condition? What quirks do you and members of your family have?

(Photo credit: Kirsten Doyle)

Filed Under: autism, Habits, Hair, National Health Blog Post Month, WEGO Health Tagged With: , , , ,
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Book Review and Giveaway: Running Ransom Road

November 9, 2012 By

My sports massage therapist once told me that “all runners are the same”. Apparently, we all have a dedication to our sport and a streak of stubbornness that makes it very difficult for the medical gurus to rehab us after an injury. I’m sure that’s true to a large extent: I once twisted my ankle one kilometre into a planned 15K run, and instead of hobbling home and plunging my foot into a bucket of ice, I ran the remaining 14K, because that’s the distance that was on my training schedule for that day.

For all of the qualities that we share, runners are actually very individual. We have our own style, our own strategies, our own odd little rituals. Most of all, we all have our own reasons for running, be it weight loss, general health, competition, fundraising or stress relief.

Caleb Daniloff started running in order to deal with his past.

As a young man, Daniloff spent several years blazing a trail of personal destruction, failed relationships, and substance abuse. His days started and ended with alcohol, and he frequently woke up in the morning with gaps in his memory from the night before. For a while, his life seemed pretty bleak.

But where there’s life, there’s hope, and Daniloff succeeded in knocking his addictions on the head and turning his life around. Roughly a decade after he had his last drink, he ran his first marathon.

In his compelling memoir, Running Ransom Road, Daniloff describes how he traveled from city to city running marathons, revisiting the places where he wreaked the most havoc. Over eighteen months and many agonizing miles, he confronted the demons within and faced his past head-on.

The book includes fascinating accounts of Daniloff’s early years, which included several years in Russia and a meeting with the President in the Oval Office following the family’s return to the United States. It tells the story of destruction and redemption, despair and hope, apathy and determination. Above all, it is a tale of courage and triumph.

The smooth narrative of this book makes it easy to follow, as the author skilfully interweaves accounts of his marathons with snippets of his life.

Running Ransom Road is a story that will appeal to runners and non-runners alike. If you are looking for inspiration or simply a good read, this book is well worth your while.

I have one copy of Running Ransom Road to give away to a reader in Canada or the United States. To enter, just check out the magic Rafflecopter below. The winner will be contacted within 48 hours of the giveaway ending. Good luck!

a Rafflecopter giveaway

 (Cover image, review copy and giveaway copy kindly provided by Houghton Mifflin Harcourt)
Filed Under: Book review, Caleb Daniloff, Giveaway, National Health Blog Post Month, Running Ransom Road, WEGO Health Tagged With: , , , , , ,
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Five Early Signs of Autism: My Family’s Experience

November 8, 2012 By

My boy at the Autism Centre family day

When I tell people that my son has autism, the first question many of them ask is, “How did you know there was something wrong? What made you get him assessed?” Many people asking this question are having concerns about their own children, weighing up the idea of taking them to a pediatrician.

It would be so easy to point worried parents to websites listing early childhood development checklists and signs of autism, but that would only help a small number of people. The trouble with autism is that it is so individualised. It manifests in so many different ways. You get the kids who can’t string two words together but can rebuild a computer in two minutes flat. And you get the kids who are fully verbal but never learn to look both ways before crossing the street.

Here, I share my experiences with my son. Some parents will read these and nod along knowingly, identifying with every point. Others will wear a perplexed expression and say, “My child doesn’t do that.”

So, how did I know something was wrong?

1. Lack of speech or any other meaningful communication. By the time he was two, George was not talking. He had about thirty words in his vocabulary, but he was using fewer than ten of them in the right context. They were used as single words only, always for the purposes of requesting. Juice. Milk. Chee’s (Cheerios). He also did not have any kind of repertoire of meaningful gestures. He couldn’t point, and if he wanted something he did not know the word for, he would take my hand and move it in direction of the object he wanted.

2. No desire to play with other kids. When other kids his age were starting to play collaboratively with each other, George was still in parallel play mode. He did not object to the presence of other kids as long as he had the space to sit on his own and do his own thing. He did not see other people as potential playmates, but as functional beings: if he needed help to manipulate an object or separate stubborn Lego blocks, he would seek out an adult and shove the object into their hands. That was the extent of his interaction.

3. Not using toys for their intended purpose. Unlike some parents who say that their kids “became” autistic at a certain age, or after a certain event, I had a feeling fairly early on that there was something not quite right with George. One day, when he was at the age when babies are just learning to sit unsupported, I put him in the middle of the floor and propped him up with a nursing pillow. I surrounded him with all kinds of toys, just to see if he would respond to anything. There were stuffed animals, Lego’s of various sizes, fabric books, and a variety of planes, trains and automobiles. There was all kinds of stuff. He didn’t care for any of it. His attention wasn’t caught by the brightly coloured balls, and he didn’t make any attempt to grab at or swat any of the dangly things I tried to entice him with. He pushed a big red button on a train, and then grabbed a piece of string that was caught on my shirt and spent the next half-hour staring at it from different angles.

4. Prone to sensory overload. As a toddler, George hated going to the store. He would tolerate the grocery store for short amounts of time, but by the time I was at the checkout, he was usually having a meltdown of epic proportions. In those days before the autism diagnosis entered my orbit, I couldn’t understand what he was making such a fuss about. The only way for me to stop those meltdowns was by taking him out of the store. Looking back, I now realize that he was simply overwhelmed by everything that goes on in a store: fluorescent lights, lots of people, lots of displays, lots of sounds. Wal-Mart in particular set him off. Something about the checkout area sent him into a state of absolute panic.

5. Instinct. Ahhhh, there’s nothing quite like a mother’s gut feel. I have no idea if there is any science behind it, but mothers have this uncanny ability to just know there is something wrong with their child even though all looks fine and dandy to the outside world. This is why I always tell mothers that if they have a feeling something might be amiss with their child’s developmental progress, they should park themselves in their doctor’s office and insist on a referral for an assessment. There are doctors who will tell you to wait, that the range of development is broad, that boys reach milestones later than girls. Don’t listen to that guff. Don’t take no for answer. If you have to tell your doctor that you will sit in his office gathering dust until he gives you a referral, so be it. Listen to your instinct and don’t let anyone talk you into acting against it. I made that mistake and to this day, I bitterly regret the year of early intervention that my son missed as a result.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Autism Diagnosis, Developmental Delay, Early signs Tagged With: , , , , , , , , ,
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Time to Jump in Puddles

November 7, 2012 By

From time to time, people who think they could raise my kids better than I do criticise me for not enrolling them in weekend activities, and from time to time, I wonder about that myself. I get this guilty feeling that I’m not exposing my kids to enough opportunities. From a logistical standpoint, it is so difficult, though. Even if you assume that I’m up to my neck in free time during weekends, which I so totally am not, my husband and I only have one car between the two of us. My husband usually goes to work on Saturdays, leaving me at home with the boys and a public transit system that is sporadic over weekends.

The real question is whether this is even an issue. Does it matter that the boys are home with me on Saturdays instead of being whisked off to baseball practice and karate class? It’s not like I get a lot of time with them during the week, and even when I am busy working on invoicing or household admin or laundry, I love having the boys around me. I listen to them play together, which they are doing more and more, and I let them watch movies like Ice Age and Cars 2. I break up their sibling rivalry spats, eat lunch with them, and occasionally bully them into picking up their toys. Sometimes we make “cake in a mug” or s’mores, or play intriguing variations of Scrabble. When I am doing my own thing, the kids will rush up to me at random times just to launch themselves at me and give me a hug.

If they were in weekend activities, none of that would happen. Someday, I know it will all change, and the boys will be off doing their own thing with their friends. But for now, I enjoy having that time with them.

And for the kids, it might not be a bad thing to have a bit of downtime. Their weeks are so busy, with school and homework and time with the respite worker and all the rest of it. I worry that overscheduling them would leave them no time to be kids.

After all, kids should always have the time to run around in the rain and jump in puddles.

Photo credit: Kirsten Doyle

Filed Under: Activities, Children, National Health Blog Post Month, parenting, WEGO Health Tagged With: , , , , ,
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Body for Life: Starting the Adventure

November 6, 2012 By

Quite a few years ago, on the suggestion of my friend Adam, I entered something called the Body for Life Challenge. Adam, who was my chiropractor at the time, was entering the challenge himself, and he formed a little group of people who would take part and offer support and encouragement to each other along the way.

Body for Life is an exercise and nutrition program that promises spectacular results if you follow the guidelines. The guidelines are quite simple. The nutrition aspect involves balancing carbs with proteins, and it follows the now-accepted protocol of six small meals throughout the day instead of one large one. The exercise aspect involves daily workouts, alternating cardio activity with strength training. You follow the Body for Life program for six days a week, and on the seventh you are free to eat whatever you like and sit in front of the TV all day.

I stuck with the program for about nine of the twelve weeks, and during that time I had phenomenal results. Excess weight melted off me, and for a while, my flabs actually turned to abs. Unfortunately, I was thrown off-track by a serious injury to my left (dominant) hand that required stitches, cortisone shots, and all kinds of other ugliness. Back then, I did not have what it took to get back into the saddle after a setback. I was completely derailed.

Although I gained back some of the lost weight after that, it wasn’t all a complete waste. Being on the program taught me some basics about nutrition and exercise that have stayed with me to this day, and of the fifty or so pounds that I lost, I gained back about fifteen. So as a program with long-term effectiveness, it’s pretty good.

I have been feeling a little iffy about my body of late. I run long distances and exercise several times a week. My eating is less than ideal but certainly not disastrous. And yet, I still struggle with my weight. I continue to fight with belly fat gained during my pregnancies seven and nine years ago. I have bat wings. My thighs wobble. My oversized boobs get shredded to bits on long runs, in spite of a good sports bra.

I hate to think what I would look like if I didn’t exercise. I mean, what does a girl have to do to be a normal weight around here?

In the wake of my decision to run a marathon three years from now, I have decided that I am going to reinvent my body. I will never be reed-thin or fit into a B-cup, and perhaps I will always have a little jiggle in my belly to remind me of the lives I had the honour of growing. But there is weight for me to lose. There are things I can do to lose fat, increase muscle mass, and be leaner and stronger.

Over the years, I have tried a number of different eating plans. I have sought the advice of a life coach and a dietician. I have attempted this thing and that thing. But none of it has worked, and it has been very frustrating. For someone with body image issues and a history of eating disorders, this is not healthy.

And so it makes sense to me to go back to the only program that yielded results, the only program I was able to sustain for any length of time. Yesterday, I started the Body for Life challenge again. I have recorded my weight and measurements, and I have had my “before” pictures taken.

This time, it will be even better than before. Because now, I know I will have the strength to pick myself up after any setbacks that may come my way. And when the twelve weeks are over, the healthy habits that I gain will stay with me.

I am not publishing my initial weight and measurements, but I will report back every week to tell you what I’ve (hopefully) lost, along with pictures that show progress. Hopefully they will look better than this:

 

 

 

 

 

 

 

If you really want to see my flabby bits in all their glory, you can click on the pictures for full-size versions

Photo credit: Kirsten Doyle’s long-suffering husband

 

Filed Under: Body for Life, Exercise, National Health Blog Post Month, Nutrition, WEGO Health Tagged With: , , , , , ,
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Teen Series Part 4: Time To Think

November 5, 2012 By

Three years ago, when I got fed up with being reliant on a transit system that kept raising its fares, I started car-pooling with a co-worker, Michelle. Through many commutes we shared laughs and stories, and became very close friends – so close that Michelle was my maid of honour. Because I am friends with Michelle, I have the pleasure of knowing her daughter, Megan, who is 16 years old. Today, Megan shares her brave and very compelling story with us. Here are her words, uncut and unedited.

My name’s Megan I am 16 years old and I live in London, Ontario. Seeing into the minds of people my age can be difficult for anyone who isn’t my age. My generation faces new problems, new social norms, and new expectations. The way teenagers thought 30 years ago isn’t how we think today and the way we think now won’t be how teenagers 30 years from now will think. And within that every teenager will have different priorities and different hopes and dreams so clearly you can never have a full understanding of every teenagers mind. I have been sick for the last 5 years of my life and have been removed greatly from people my age so I can’t tell you much about the way they think but I can tell you about the way I think.

The thing about being sick for so long is I had a lot of time to think.  Most people envy being able to stay home all day and relax but being that isolated can become boring and tedious; you can only check facebook so many times. For the first few years of my illness I found small things to entertain me, video games, books, television shows, but as I grew older I spent more of that time thinking. I thought about my future and if I would get the chance to have one, I thought about my family and if I would always be a burden on them and I thought about the world and would I ever be able to do anything for it. I started spending more of my time reading about what was going on in the world and I started seeing things that I couldn’t believe were happening. For example a couple months ago in Iran 70 university programs were closed off to women because they were surpassing the men within them. And in many places around the world, such as Uganda, it is legal to kill a person for being a homosexual. Reading all this I wanted to fix it but never thought I would have the opportunity to.  At that point in my life I didn’t let myself dream or hope for anything but sickness, after five years of nearly constant illness how could I? So I ignored these problems and went back to my tv or video games.

Something changed for me a few months ago, I got tired of letting my illness stop me, I got tired of not trying to do anything because no one thought I could succeed, and I got tired of accepting that I would live the rest of my life being ill. I don’t know what changed for me but I did. I started researching universities and looking at careers in human rights and I started working towards a future for myself. I started volunteering in the community and doing things to see if I could handle going back to school. And now after five years I’m fighting my illness so I can do something with my life. I have decided I want to become a human rights lawyer and be the person that helps solve the types of issues mentioned above. So this year I’m working my butt of to do well in school and to get more involved so I can get into a good university and eventually a good law school. It is hard, I get tired and I get sick but I keep working because I have to, because I’m tired of letting illness rule my life.

So that is how I think, it may not be how every teenager sees the world but those are the challenges I am currently facing and I hope this gives some insight on a teenagers brain even if it is just mine. One thing I want to add is a quote from novelist John Green.

“When adults say, “Teenagers think they are invincible” with that sly, stupid smile on their faces, they don’t know how right they are. We need never be hopeless, because we can never be irreparably broken. We think that we are invincible because we are. We cannot be born, and we cannot die. Like all energy, we can only change shapes and sizes and manifestations. They forget that when they get old. They get scared of losing and failing. But that part of us greater than the sum of our parts cannot begin and cannot end, and so it cannot fail.”

― John Green, Looking for Alaska

(Photo credit: NASA Goddard Photo & Video. This picture has a creative commons attribution license.)

Filed Under: Dreams, Guest Posts, health, Illness, Megan Clermont, National Health Blog Post Month, Writing Tagged With: , , , ,
post

Too Much Information?

November 4, 2012 By

Today’s prompt in the National Health Blog Post Month challenge invites participants to talk about disclosure. How do we decide what to share and what not to share in our posts?

This is a question I grapple with from time to time, as all bloggers should. As soon as you put any aspect of your life onto the Internet, you can say goodbye to privacy. Sometimes that really doesn’t matter. There’s no danger in me posting my race times and less-than-flattering photographs of myself in motion. Any Joe on the street can go online and look up my race times anyway. Since that information is publicly available, I may as well post it in my blog where I can brag about it a little.

I am equally open about my son’s autism and the challenges it presents to my family. This is where the question of disclosure becomes a little tricky, because I am being open about people other than myself. There are certain things that I will not discuss on the Internet, but in general I talk quite freely about the lives of my kids, and to a lesser extent, my husband. It is one thing for me to talk about myself, but my right to make that decision on behalf of my children is a bit of a gray area.

My blog serves multiple purposes. It’s a form of expression for my socially anxious, bad-at-verbal-conversation self. Writers as a breed tend to be a little neurotic and introverted, and I am no exception. This is how we communicate. Writing gives us a voice that we wouldn’t otherwise have.

Apart from fulfilling my own need for self-expression, my blog gives hope to other parents of special needs children who might be feeling a little lost and alone. From time to time, I get emails from readers telling me how my writing has made them feel less overwhelmed, and more able to cope. Those emails make everything truly worthwhile, because at the end of the day, what I want is to do my small part to make the world a better place for our kids, for the parents and siblings, for everybody.

At the same time, I hope to smash the stigmas surrounding autism, and the way I see it, the best way to do that is to be frank about it all. People are afraid of what they don’t understand, and in talking about autism, I hope to give it a human face, to give people the message that although there are little kids with autism, they are first and foremost little kids.

There are aspects of my kids’ lives that I will never talk about on my blog. My basic rule is this: if I cannot talk about it in public, I cannot talk about it on my blog. I agonize over many of my posts, weighing the benefits of sharing information against the risk of anyone getting hurt. I have written entire posts and then deleted them without publishing them.

It’s a delicate balancing act sometimes, and I find that as long as I listen to my gut instinct, it’s OK.

How do you decide what information to share on your blog? Have you ever shared something and later regretted it?

(Photo credit: John “Pathfinder” Lester. This picture has a creative commons attribution license.)

Filed Under: blogging, Disclosure, Internet, National Health Blog Post Month, Privacy, WEGO Health Tagged With: , , , , , , , ,
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