WITH or WITHOUT THE GROUP

There is so much emphasis on groupwork, teamwork, collective action, community, unity, mass mobilization and all the socio-culturally acceptable groupings of individuals (who were once quite unique entities before, thank you very much...) that the power of one gets overshadowed, underrepresented, and frequently misunderstood (to mean "a big ego") underneath all the hubris of group loyalty and devotion.  Events such as training camps, workshops, and even those ubiquitous support groups that pepper city landscapes to address every single human trial and tragedy under the sun are not always the best possible remedy for someone seeking....for someone just seeking.

Humankind is complex, and the range of all the things that make us human, from our actions to emotions to circumstances, significantly impact how we deal with the challenges of working within "a community".  Truth be told, most of us have been conditioned to accept the limitations of group norms and values.  They are not necessarily unique to our individual selves, but because we need to survive in a world that imposes representations of the collective will upon us, we make compromises and change our behaviour to adapt to the standards of the group.

This denial of our true selves creates a lot of tension in our bodies, our psyches, and our spirits.  We lose sight of who we essentially are OR who we could potentially be whenever we suffocate those precious dreams, goals, opinions, and ideas that make us distinct under layers and layers of communal constraints.  The full range of human emotions and thoughts are not permitted to witness their talents in a group setting in order to safeguard the sanctity of "the group".

"The group" can often pick a person's flaws asunder and because many of us live in societies that teach us that everything is about competition and comparison especially when it comes to demonstrating "normality", we invariably make the mistake of facing ourselves off against others.  It's hard to escape that.  We either see ourselves reflected in the similar actions of another group member (and that's when things are comfortably favorable for us) OR in the opposing asymmetry of socially awkward and questionable approaches (eeks!...when things turn against us!).  The latter isolates us from the group, and often leaves us feeling "different", demoralized, disliked, and depressed.

Some people don't have this problem of "fitting in" because they are "natural leaders" and/or "can fake it till they make it".  But many others suffer horribly when their lives are run by the forces of supposedly natural laws that subsume each of their magnificent matchless dust to the rigors of the clan ethos.

Like drugs, groups don't always work.  Sometimes, connecting with our essence takes a solo effort.  Nothing wrong with that.  Once we wade through the dictum and decorum of the four-walled spaces we've constructed for ourselves and for others, we might find what is authentic about the total soul.  The total soul who was created from an explosion of particles that had no sense of borders, boundaries, and boardrooms.

Peace.

If you can't escape reality, read a book.

I am a passionate consumer of books.  I have chewed and swallowed countless words leaping from the pages of artfully-written mysteries, classic romance, sci-fi fantasies, epic adventures, tales of woe, and all the other stuff in between.  Children's lit.  Adult fiction.  Creative non-fiction.  Self-help.  Instructional.  Photographic and illustrated volumes. I don't place any limits on what my mind craves.

With every turn of the last pages of one book, I come closer to choosing the next.  It must be said that I don't fully enjoy the feeling of concluding my journey through a book.  I become attached to the characters, the ideas, the setting, the intrigue, and the psychology that a single human being conjured up at the stroke of a creative hour of power.  I wish for another turn to experience this mysterious realm, an alternate universe of sorts, that engages me and holds me captive for the few hours I have time for such a privilege.  Somedays I even wish for that special element in nature that consumed Don Quixote and imagine myself possessed by the indefatigable intelligence of seeing what might clearly not exist at all...at least in the everyday reality we've created.  

Speaking of Don Quixote, I'm presently engrossed in the book having heard much commentary from others of its humour, complexity, and pages of unnecessary digressions.  Since there are several renditions of the original, I'll be pretentious like other literary snobs and write here that I'm reading the version translated by Tobias Smollett (if that makes any impact on your intellect), an 18th century Scottish poet and writer, who was educated to be a surgeon, actually.

I'm only on page 108 of the one-thousand-and-ninety-page tome (I thought spelling out the page number would be that much more alluring).  There were several editions at the bookstore, but I settled on this one because of the cover, which depicts two travellers on horseback (well, one on a horse and one on a mule, and after reading up to page 108, it doesn't take a rocket scientist to figure out who these personages are) etched in shadowy form with yellow-brown hues.  I've included it here:

I'm sure you already know the story, so I won't bore you with my lexically-challenged summary.  What I will write is that somedays I too wish I could view the world through the lens of a profoundly imaginative gentleman who lives with masterful devotion in his world of illusions.  With a will of steel, he dons his stately armour, clutches his lance, and mounts his unsteady steed, Rozinante, all to declare to those who are foolish enough to cross his path the majesty of his title and the passion with which he will defend chivalry and his fair Dulcinea, the woman born out of his delusions (Oops!  I think I just wrote a partial summary here). Even the windmills are giants with spinning arms that he must subdue with knightly courage.  In his eyes, he sees the fantasy as depicted in all the tales he ever read of armoured men of valour.  He doesn't see people as they are in this fictionalized reality, but as they are in his fictionalized reality! 

What's the problem with that?  Plenty, to plenty people, who I trust are quite reasonable and practical about all things associated with life 'as we know it'.  But I wonder if all reality is just a figment of our unified imaginations.  We start believing what we perceive as something believed by most.  Like this Higgs boson thingamajig - the God particle (scientists detest the label) - that acted like a kind of crazy glue to bring all these floating particles together.  How did the Higgs boson guide this profound birth of our solar system?  Was belief attached to the entity?  The more real something is depends on how many people believe in its existence in the way they are dictated to believe in it. 

What if we were to take the version dictated to us from the time we were born and turn it upside its head and believe it as something entirely different?  What if our version of reality includes an alternate result that the mainstream world could never entertain? There were and are many great thinkers and activists in our world who have challenged the norm and envisioned a more just, equitable, and accepting society. Unfortunately, these thinkers and doers who want to change the system have often faced persecution and in many cases, death.

But at least this is what literature has the power to do. 

It creates alternate realities by extraordinary and talented writers who take risks and imagine beyond binaries, dichotomies, norms, actualities, and who push against mainstream notions of science, biology, psychology, and society.  They create with passion and conviction what they know to be true in their characters' worlds. How convincing these netherworlds and unconventional characters are depends on the craftiness of the writer. Then we can choose to believe in the realness of their proposition. Does it make sense to us however far-fetched? In believing, we allow ourselves to dream.  And in dreaming, we open ourselves to the possibility of acknowledging difference in our world.

I read books for that very purpose. A chance to escape but also a chance to connect with humanity. To dream of impossible things. To admire impossible characters. To explore the 'what ifs'.  Just have to remind myself to take off the armour before leaving home.

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ASAAP CELEBRATES PRIDE 2012

PRIDE signs ASAAP participants created

Water and enthusiasm shooting out from the windows

We march for PRIDE

For the first time, I willed myself to venture out into the heat and dust of a July 1st Sunday to march alongside my ASAAP colleagues at the Pride Parade.  I wasn't sure what to expect since I have never been to the actual parade in all the 4 years I've lived in Toronto.  I wasn't disappointed!  How exhilirating it was to see thousands of people roaring their support and encouragement from behind the fences.  We roared back our support and encouragement too, and handed out hundreds of condom packs to the enthusiastic crowd. 

The day was hot, but the clouds gave us some relief from the sun and there was a gentle breeze stirring and weaving its way through the parade.  We weren't the only AIDS service organization there today.  Members of the Black Coalition for AIDS Prevention, Asian Community AIDS Services, AIDS Committee of Toronto, Committee for Accessible AIDS Treatment, Casey House, and Toronto People With AIDS (these peeps had their own truck and were having a great time cooling the crowd and parade participants with toy water guns!).  Everyone seemed happy to be there dropping by each of our neighbours' sections to say "hello" before the parade started! 

Although ASAAP didn't have as big a group as the others, our joy and enthusiasm could be felt as we walked and interacted with the crowd all along Bloor, Yonge, and finally Gerrard.  Our Grand Marshal kept the energy up and the onlookers entertained as he boogeyed in front of our banner to the music booming from the festive trucks ahead.  Cameras were clicking away and I felt like royalty as the positive cheers, waves and smiles from the crowd kept us moving in wonder and child-like surprise through the stream of vivid colours, upbeat tunes, and liberating messages.  It was a privilege and an honour to be part of something that carried with it such a strong message of unconditional acceptance.  That was the energy I felt from the crowd and from the parade folks.  We were parading our dreams of love, freedom, compassion, and courage before the world, at least the world in Toronto! 

The strongest message of the day was "be true to yourself".  No matter how ugly it gets when people shun or reject us, at the end of the day, if we can accept ourselves for who we are, than we've overcome our most daunting challenge.  None of us is perfect - what a cliche, but such an important one to truly comprehend! How connected we all are in our imperfections, in our trials, and in our victories! 

By the end of the parade, I was more motivated and inspired than ever to work for the good of our communities by helping to spread ASAAP's message of LOVE, expressed in so many beautiful ways through education, outreach, art, and support.  For volunteer and other opportunities, please visit our website: www.asaap.ca.  Join us for next year's PRIDE! 

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Be Many People Not Just Yourself

We are never who we think we are because with each new challenge, we question our choices and eventually come to question ourselves.  When we face doubt, it's a sign that part of us might experience some transformation of perspective, of nature, of movement.  Whatever that change, at the heart of it lies the human desire to seek something new.  When we resist, there is more tension, and we have to ask ourselves if we should fight it or relinquish whatever power/energy we have to create some semblance of peace.  In most cases, we can give up a part of ourselves and the other side too, but we can also fight for a part of ourselves and the other side too.  And so we shift, we colonize, we make an adventure, and we compromise.  Such is the nature of our wavering identities.  Essentially, we can be anyone we choose if we choose to relinquish our hold on the past.  We can be anyone.  And we can also be uniquely ourselves whatever that might mean to you and me. We can get along with other humans if we adapt ourselves to the environment in that moment. 

I'm not proposing that we give up the integrity of our spirit by succombing to someone else's idea(s) of who we are, but to try cheating our proclivities slightly to appease the one on the other side just to feel what it feels to see things from that side.  However impractical and foolish that gesture may be, I think in the end, you come a little closer to understanding the diverse entities of human nature. 

In my world, there is no 'side', there are only variations and explorations.  No one is left out of the equation.  Everyone is a friend and everyone is an enemy, and all the other mixtures in between.  It's rather nice to be everything and everyone at different junctures in my life journey with no hatred towards anyone.  Just a calm acceptance that this person is another gift of the human evolutionary cycle. 

We are all part of each other in some way.  If we are bad, then others learn from our conduct and are challenged by our conduct.  If we are good, then others are inspired by our conduct and are also challenged by it.  If we are imperfect, others learn to accept their imperfections. 

Now I've become a bit Dalai Lama-ish in this post.  But I just started writing and didn't know it would conclude in this way.  I hope you enjoyed it and hope it might cause you to think how you yourself can be many people not just yourself. 

Take care. Peace.

NATIONAL SPASMODIC DYSPHONIA SYMPOSIUM APRIL 2012 in PHOENIX: REFLECTIONS

Palm trees towering above Old Mill Road in Phoenix AZ

On April 28th, I attended for the first time the National Spasmodic Dysphonia Association's (NSDA) symposium in Phoenix, Arizona.  I arrived a day earlier on a standby ticket, which left a lot of spare change in my pocket.  Suffice it to say, I was the last person to get on board the early morning flight from Toronto Pearson International Airport.  I couldn't contain my excitement at the thought of all the knowledge I would pick up on SD at the event.  I've had adductor spasmodic dysphonia (an incurable voice disorder, symptoms of which include a strained, squeezed voice that takes a lot of effort to push out) for four years now and also developed muscle tension dysphonia as a result of my body trying to compensate for the SD.  I was thrilled at the opportunity of meeting others who were struggling with SD too and was curious to find out what treatments worked for them and how they had adapted to the symptoms of the disorder. 

The symposium was scheduled for Saturday, but there was a meet 'n greet Friday evening.  The mic was passed around in the conference room of the Holiday Inn as delegates and organizers welcomed all of us and shared some of their personal stories about SD and their participation and involvement in the NSDA.  All but three of us were American.  I and one other participant and her husband were the only ones from Canada. There were quite a number of elderly folks in the crowd.  One lady I spoke with was particularly sweet.  Her warmth and kindness was immediately felt. 

The conference got underway at 10 a.m. the next day.  Charlie Reavis, NSDA president, opened the symposium with some inspiring words and promoted the main theme of this year's gathering: "we are more than the SD".  I liked his message.  Throughout the symposium, he was responsive to all the delegates, approachable, and kind.  He also had SD, but because of the belief he had in himself, he didn't allow SD to rule his life.  This was the message he wanted all the delegates to take away with them. 

Charlie Reavis, President of the NSDA, opens the symposium

The symposium continued with an informative lecture by Dr. Gerald Berke, who is the go-to treatment expert for people with SD.  Dr. Berke is known for conducting the Selective Laryngeal Adductor Denervation-Rennervation (SLAD-R) operation, which involves some nerve slicing and nerve connecting.  The nerves involved are the tiny ones that connect to the muscles responsible for AdSD (adductor spasmodic dysphonia).  According to the NSDA, more than 80 per cent of patients responded positively to the operation over the treatment's 15 year history.  Patients have reported that they have not experienced any of the breaks characteristic of AdSD and now live with a functioning voice.  The NSDA stated in its information brochure on surgical procedures that a small minority of patients returned to BTX (Botox) treatment after unsuccessful results with SLAD-R.  Unfortunately, SLAD-R doesn't work for those with abductor SD, characterized by a breathy voice that increases during speech. 

Dr. Gerald Berke, chairman of UCLA Department of Head and Neck Surgery in Los Angeles, developed the surgical treatment for SD called SLAD-R.  He is also a member of the NSDA Scientific Advisory Board.

Important points about our genes and SD were presented by Laurie Ozelius, Ph.D, also a member of the NSDA Scientific Advisory Board.  She said, SD can be genetic, but it was rare to find gene carriers.  However, one carrier can affect others in every generation.  There was a lot of scientific language in the presentation that I had to translate in layperson's terms in my mind.  Still, it was informative and important for us to be aware of the research being done in this area. 

Laurie Ozelius, Ph.D., associate professor in genetics and genome sciences and an associate prof in neurology at Mount Sinai School of Medicine in New York, speaks to delegates about DNA and SD

Christy Ludlow, Ph.D., professor of communication sciences and disorders and director of the Laboratory of Neural Bases of Communication and Swallowing at James Madison University in Virginia, spoke to delegates about the variety of research studies on SD.  She addressed many of the observations we as patients have made over the course of our experience with SD.  Some of these observations included development of social anxiety and depression.  She touched on two of the observations I had made about speech feedback and accents.  Many of the research studies Ms. Ludlow mentioned in her talk can be found at this site: http://report.nih.gov/.

Christy Ludlow, Ph.D., Director of the NSDA Scientific Advisory Board, gives delegates at the symposium the latest research updates

What I've noticed is that the voice functions without breaks as soon as I can hear my voice coming back to me through a monitor as I speak with a mic.  Also, when I put on a fake British or Indian accent for instance (it could be other accents too), the breaks and strain disappear.  Although I can maintain a strain-free voice when I speak with a mic and a monitor (especially when giving heartfelt speeches!), I can't do the same with the fake accents.  It takes a lot of energy to maintain the voice and pretty soon, the cracks and strains reappear.

I have found the same to be true with singing.  Many people with SD have said that singing evens out the voice possibly due to the fact that we're using a different part of the brain.  When I use my head voice, the SD disappears, but the more I sing in that moment, the harder it is to maintain that smoothness of tone because the SD eventually creeps back into the voice.  I feel winded afterwards and completely out of breath.  This is where deep-breathing yoga might be helpful. 

A cashier at the nearby nutrition shop on my street recommended kripalu yoga, the yoga of consciousness that helps release emotional and spiritual blockages while learning different positions.  I think there is still a lot in me that requires some resolution.  Addressing these issues will not magically make my old voice reappear.  I harbour no delusions in that regard, but I do believe I can come to a place of acceptance once I make an effort to heal those old wounds and learn to trust where I'm heading. 

For people who want to be more sensitive to the needs of SD patients, it's important to point out that it is a neurological disorder and can not be cured by eating certain foods, drinking herbal teas, exercising, yoga, relaxing, breathing deeply, losing weight, etc.  I've had so many people tell me that I should just try to relax more, but they have no idea that to tell me so adds further stress and pressure to make my voice sound "better".  The symptoms will come and go as they like no matter what I do.  However, adopting measures for healthy voice production in general such as decreasing sugar and caffeine consumption and drinking more water to keep the voice hydrated are ways to maintain the body's capacity to adapt to the fluctuations in the voice.  This has worked for me.  I find the less sugar I eat in a day (I have a verrrrry sweet tooth!), the stronger my voice feels.  PLEASE NOTE: there is no change in the SD, but the overall positive energy (via good nutrition and a good attitude!) in my body allows me to speak without tiring out too fast. 

After Ms. Ludlow's lecture, we broke for lunch.  The delegates then had further opportunity to speak with one another and find out what treatments worked and didn't work.  Most of them were on the BTX treatment.  Some shared their hits and misses with Botox, for instance, when the doc administering the shot injected a bit too much leaving the patient with a breathy, whispery tone for weeks.  Dr. Berke said, laryngologists should know what dosage is right for each patient.  Some people require more, some less.  It takes time for the body to figure it out.  BTX treatment involves either unilateral or bilateral injections right underneath the thyroid cartilage in the throat.  Dr. Berke said that if patients were happy with the results of their treatment regime, they should stick to it. 

I haven't followed this route due to many reasons, one of which is that I'd have to take a few weeks off from school and work to wait it out until the breathiness after the initial shot of Botox disappears. In short, I won't have a voice for a while.  Another reason and the most important for me is that I need to allow my body to adapt to this change in voice instead of giving it the standard band-aid solution.  As I wrote before, I want to come to an acceptance and understanding of this new voice and give my body opportunities to learn the way it works and make the necessary adjustments.  Maybe later, I might take the medical route, but for now, I'm happy traveling the path of acceptance and challenge.  I'm a journalism student, a community support worker, and a volunteer choir member and I've been able to do all of that work with this voice.  Yes, I've had many challenges and faced some negativity from others, but I find people stop hearing the voice disorder once they hear the belief and the confidence in my words. 

I am in no way criticizing those who have chosen medical treatments.  We must all find what works best for our unique selves and also know when the time is right for medical intervention, and for many people it has been either the BTX treatment or surgery.  I applaud them for having the courage to follow through and choose opportunities to better their circumstances. 

The symposium concluded with husband-and-wife duo, Thomas and Caroline Hofmann, who re-energized all of us with steps to improve our attitude and outlook as SD patients.  They emphasized that all events were neutral and that the way we thought of these events as either good or bad determined our thoughts and feelings, which impacted our behaviour.  They recommended ways to change our lives to eliminate or modify voice usage such as changing our jobs and getting vocational rehabilitation, and using other strategies to assist in voice production: voice amplification devices, educating others and enlisting their help, or using email/texting more frequently to communicate.

Thomas Hofmann, Ph.D., chair of the psychology program at Hodges University in Fort Myers, Florida, and Dr. Caroline Hofmann give an Oprah-esque presentation on improving the quality of our lives with the right steps and the right attitude

Frank Prochaska, Ph.D., the chair of management-emeritus at Colorado Technical University, wrapped it all up when he said, "you can't pursue success. It ensues" as a result of what you choose to focus on along your life path.  He said to avoid hearing ourselves and instead cultivate the notion of seeing ourselves and what we have the potential to achieve.  Very nice ending to an amazing series of informative and inspiring lectures given by people who are committed to the cause. 

Frank Prochaska, Ph.D., advises delegates to "try to fall off the tightrope" in a talk about paradoxical intentions

The symposium finale included a delicious dinner where the remaining delegates and NSDA staff and guest speakers shared their reflections on the symposium and exchanged contact information to stay connected.  I met so many lovely people, all passionately working to raise awareness about SD
and offering one another great support! I feel blessed and privileged to have had the opportunity to meet the other delegates and the organizers of the symposium.  I feel empowered to continue the work to inform and educate myself and others with the knowledge gained from this positive and transformative experience. 

Thanks to the NSDA for existing and organizing a great symposium, and thanks to all the wonderful people I met who shared their personal triumphs, treasures (one of the delegates gave me one of her published works for free called "Everybody's Woman", by Pat Hill, Avid Readers Publishing Group 2012), and also some of the tragedies they have struggled with. 

For more information on the NSDA, information about SD, and upcoming events, please visit: http://www.dysphonia.org/

The sheer beauty and strength of the human spirit continue to defy all odds.  Never give up.  Keep your chin up.  And speak up in ways that help you get your message across.  There are no limits.

That's me enjoying the sights and sounds of Phoenix after the symposium

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