The symptoms of spasmodic dysphonia started to intensify shortly after the summer of 2008. It became more and more pronounced in 2009 when I was dealing with a major crisis in my life.
How has SD affected me?
Tremendously. We take our voices for granted. So much is expressed through the voice. All the nuances of our emotions, our thoughts, and our temperaments. With SD, a lot of those layers that add so much depth to speech disappear. What's left is a strangled, garbled tone that is even more difficult to understand over the phone. The strangled tone is a form of Adductor SD because the muscles/nerves around the voice box contract, squeezing the voice box so very little air comes through. Abductor SD is characterized by a breathy sound because there is too much air being pushed through.
Treatment options range from natural healing techniques like yoga, acupuncture, reiki, massage to more conventional forms like Botox and surgery. Botox has been proven to work in the short-term, giving SD sufferers two to three months of a normal functioning voice. But it, like so many other drugs in the repertoire of western medicine, are band-aid solutions to illness and disease. Surgery has also worked, but I am not sure at this time if it's a permanent solution, as most sites on SD state that the symptoms reappear. This is something I will have to check with a specialist, of course.
I am still teaching surprisingly enough. I teach ESL at a school that has kept its doors open to me and my garbled voice. Both the staff and the students have been quite supportive, and when I don't make it an issue, they don't either. It's the energy I put out to others. If I see my voice as a hindrance, then I'll have a lot more roadblocks to deal with. I find it's far more effective to walk into a situation with confidence, honesty, and belief. I think this is what's helped me deal with the drastic change in my voice.
Sure, I've scared a few people away, but are they really worth my time? Nope! The ones who've stood by me, treated me like I'm normal (which we all are - normal in our uniqueness) are the ones who I call my friends and my family.
Relaxation is the key though. If I'm not relaxed around people and get stressed, it'll immediately show up in my voice. The SD symptoms intensify if I talk about anything related to what happened in the past that might have caused the SD, what's happening now to some of my friends and family, world affairs like war, poverty, violence, disease..basically anything related to the misfortune of people who affect me.
SO, I've placed myself inside a very happy bubble to help me relax and to appreciate the gift of innocence. This is why I choose to remain positive. People might criticize me for being this way - like I'm blind to the despair raging in this world, but I am just as much aware of that despair like everyone else - and at times, more so than others. It's how I choose to process it that's different. I choose faith, optimism, and belief. Faith in God/the Universe, in humankind, in Mother Earth. Optimism in the idea that there's good everywhere we look, in every action - whether to make us stronger and wiser or to help the world come to a better understanding of things. Belief in the potential I have to use WHATEVER I have in mind and body to affect some positive change in this world, locally or globally, or both.
All I ask is for a little bit of an adjustment when communicating with me:
- Ask me to repeat if you don't understand what I'm saying.
- Don't take it personally if I don't respond or if I don't call you up to talk.
- I find it very difficult to sometimes articulate my thoughts into speech when I'm engaged in a stressful conversation, so please don't be miffed if my response seems superficial.
- I try to take as many breaks as I can with this voice, and whatever days I have off work, I take full advantage of the fact that I don't have to speak.
- The best way to communicate with me is through writing. Send me an e-mail or a text message. I would like to support my friends and family, but any kind of stress affects my voice, and so I can better communicate my support via the written word. This is what I'm choosing to do now. I hope my friends and family will understand.
Thank you for reading :D For more information on SD, please visit the website.
Sunday, April 25, 2010
Sunday, February 14, 2010
HIV and Stigma
The other day, I attended a very compelling workshop on HIV and Stigma and how the stigma has affected those living with HIV/AIDS. I wanted to write something about it because today is Valentine's Day afterall, and what better way to make a statement of love than by showing one's support to a community of people who are often rejected or denied because of their positive status. While lack of love is certainly not the case for all who suffer from HIV/AIDS, there are many who aren't as fortunate. The following are some key issues that people living with HIV/AIDS often have to deal with:
1/ Isolation
2/ Fear
3/ Shame
4/ Guilt
5/ Little or No access to resources
6/ Verbal Stigmatizing
7/ Privacy and choice in terms of disclosure
8/ Criminalization
9/ Workplace discrimination
10/ Social exclusion
A lot of the above issues are based on what our communities think of people who are HIV positive. There are a lot of misconceptions about the disease, particularly in communities that do not give opportunities to openly discuss Sexual Health, STIs, and HIV/AIDS. People living with HIV/AIDS remain 'in the closet' about their positive status for fear of being judged and treated unfairly by their families, friends, and colleagues. Often, they avoid seeking medical attention because they are afraid a family member or relative might find out.
Some of the factors that contribute to the stigma as listed on the Avert website include:
- HIV/AIDS is a life-threatening disease, and therefore people react to it in strong ways.
- HIV infection is associated with behaviours (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised in many societies.
- Most people become infected with HIV through sex which often carries moral baggage.
- There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and misperceptions of personal risk. For example, some people still think that one can get infected by sharing the same glass or by hugging and kissing an HIV positive person.
- HIV infection is often thought to be the result of personal irresponsibility.
- Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault (such as promiscuity or 'deviant sex') that deserves to be punished.
Both the external and internal stigmas can be daunting to overcome. When I say 'internal', I mean what people living with HIV/AIDS think of themselves and others living with HIV/AIDS and how they too can perpetuate many of the myths on how HIV can be contracted by being careful not to touch children in their families or cleaning everything they touch with bleach.
Certain minority groups within the HIV poz community face many more challenges due to the lack of sensitivity, support, and trust among their peers. Religion and culture play a big role in all of our lives, and the weight of moral condemnation can be a very heavy price to pay for living openly about one's HIV positive status. The fact that even HIV positive people prefer to be in romantic relationships with HIV negative partners is a testament to how deep-seated our prejudices and fears are in regards to this disease.
However, all is not lost for people living with HIV/AIDS. Canada has a great healthcare system and there are plenty of resources for people living with HIV/AIDS including free counselling, naturapathic therapies, doctors who specialize in HIV/AIDS, workshops, training initiatives, employment assistance, support groups, disability insurance, etc. These services can be further improved and developed the more people are open about their status. People living with HIV/AIDS can serve as role models and visit schools, churches, mosques, synagogues, temples, community centres, hospitals, health clinics, etc, to offer their personal stories and empower themselves and their communities through education and activism.
Still, one can't minimize the impact of the stigma. My hope is that we all take the responsibility to raise our awareness and ACTIVELY educate ourselves on HIV/AIDS so we can join the fight against HIV Stigma, and show our unwavering support for a more loving, caring, and compassionate society.
Happy Valentine's Day Everyone.
1/ Isolation
2/ Fear
3/ Shame
4/ Guilt
5/ Little or No access to resources
6/ Verbal Stigmatizing
7/ Privacy and choice in terms of disclosure
8/ Criminalization
9/ Workplace discrimination
10/ Social exclusion
A lot of the above issues are based on what our communities think of people who are HIV positive. There are a lot of misconceptions about the disease, particularly in communities that do not give opportunities to openly discuss Sexual Health, STIs, and HIV/AIDS. People living with HIV/AIDS remain 'in the closet' about their positive status for fear of being judged and treated unfairly by their families, friends, and colleagues. Often, they avoid seeking medical attention because they are afraid a family member or relative might find out.
Some of the factors that contribute to the stigma as listed on the Avert website include:
- HIV/AIDS is a life-threatening disease, and therefore people react to it in strong ways.
- HIV infection is associated with behaviours (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised in many societies.
- Most people become infected with HIV through sex which often carries moral baggage.
- There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and misperceptions of personal risk. For example, some people still think that one can get infected by sharing the same glass or by hugging and kissing an HIV positive person.
- HIV infection is often thought to be the result of personal irresponsibility.
- Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault (such as promiscuity or 'deviant sex') that deserves to be punished.
Both the external and internal stigmas can be daunting to overcome. When I say 'internal', I mean what people living with HIV/AIDS think of themselves and others living with HIV/AIDS and how they too can perpetuate many of the myths on how HIV can be contracted by being careful not to touch children in their families or cleaning everything they touch with bleach.
Certain minority groups within the HIV poz community face many more challenges due to the lack of sensitivity, support, and trust among their peers. Religion and culture play a big role in all of our lives, and the weight of moral condemnation can be a very heavy price to pay for living openly about one's HIV positive status. The fact that even HIV positive people prefer to be in romantic relationships with HIV negative partners is a testament to how deep-seated our prejudices and fears are in regards to this disease.
However, all is not lost for people living with HIV/AIDS. Canada has a great healthcare system and there are plenty of resources for people living with HIV/AIDS including free counselling, naturapathic therapies, doctors who specialize in HIV/AIDS, workshops, training initiatives, employment assistance, support groups, disability insurance, etc. These services can be further improved and developed the more people are open about their status. People living with HIV/AIDS can serve as role models and visit schools, churches, mosques, synagogues, temples, community centres, hospitals, health clinics, etc, to offer their personal stories and empower themselves and their communities through education and activism.
Still, one can't minimize the impact of the stigma. My hope is that we all take the responsibility to raise our awareness and ACTIVELY educate ourselves on HIV/AIDS so we can join the fight against HIV Stigma, and show our unwavering support for a more loving, caring, and compassionate society.
Happy Valentine's Day Everyone.
Wednesday, February 10, 2010
On Your Next TTC Ride, Practice...
...seeing beyond to see the soul. I try this on a daily basis now when I'm out and mingling with the hustle and bustle of this magnificent city. It's nothing like how it was for me when I was living in Tokyo. There, the sidewalks were teeming with people, getting to work or school on foot and on bicycles. I was lucky if I didn't get hit by a passing cyclist balancing themselves, their books and their umbrellas on a rainy day. I would get home in a state of agitation because so much of the commute in Tokyo was about struggling to avoid the flurried movements of others.
Toronto definitely has a similar atmosphere. I mean, what big city doesn't? Still, you don't get the sense that Toronto is an overcrowded city, but with just enough people to challenge your daily commute in some small way.
Though Toronto has a pretty decent and efficient transportation system when the TTC folks are not punishing us for blocking the doors, there are days when you just want to stand in the middle of the station and hurl abuse in every direction. I guess you see how lacking many of us are in common sense, myself included! For example, why would you stand right in front of the doors to enter a train when you see a crowd of people inside the train who want to get out? Also, I get quite annoyed when I'm having to stop on the left side of the escalator because someone in front forgot that the left side is for the walkers and the right side is for the ones taking a bit of a break from all the walking. And then I often get distracted by loud talking or people listening to their Ipods on maximum volume.
Ok, so here is how I've come to deal with it all:
- I've started looking at people as bright lights. Yes, the bright lights represent their souls in my mind.
- All I see is this bright light, not how they look on the outside: their face, their hair, their clothes, their posture, etc.
- Maybe it's their aura I'm trying to connect to?
- As I look at each person this way, I breathe deeply like when I'm meditating. Et Voila! The agitation that was beginning to form inside me simply disappears.
As for less metaphysical ways to deal with the stress of other people getting in your way, here are some perspectives:
- the people who stand in front of the door of the train as you are attempting to get out - SMILE at them, not a cheeky smile, but a sincere smile. I believe they put themselves there to be acknowledged even if they don't know why their feet planted themselves there. It's our souls at work.
- the people who stand on the left side of the escalator - they're trying to tell you to give your body a break, breathe deeply, and use this brief delay or pause in an otherwise rushed day to collect your senses and perhaps to focus on the people sharing the ride with you.
- the people who talk like they're talking through a megaphone or when they're playing their favourite punk band song on their IPods at a kajillion decibels of screaming noise - When I'm trying to read or when I get lost in my thoughts, it's a distraction. BUT, whatever brings you back to the present, in my mind, is no longer a distraction. All those sounds here before us are examples of life unfolding, and when we allow ourselves to be present and to witness all this life like flowers blossoming in spring time, we can really sense the preciousness of life, and how fleeting it is. Those distractions are gifts given to us to bring us from the insides of our heads, and to experience life fully. It gives us the opportunity to move away from our own self-centered view of the world, and see how others experience life.
True, it might annoy you even more, especially if you have an exam that you're studying for on the train or an interesting book you're trying to focus on. But our souls give us away...our souls want us to embrace life as it plays out in front of us. Our souls wish us to see other souls as they dance, laugh, talk, cry, and stare at us in these metal capsules that move us from one "box" to the next. It's in the in between where we have the chance to reclaim the gift of an ever-present life.
Toronto definitely has a similar atmosphere. I mean, what big city doesn't? Still, you don't get the sense that Toronto is an overcrowded city, but with just enough people to challenge your daily commute in some small way.
Though Toronto has a pretty decent and efficient transportation system when the TTC folks are not punishing us for blocking the doors, there are days when you just want to stand in the middle of the station and hurl abuse in every direction. I guess you see how lacking many of us are in common sense, myself included! For example, why would you stand right in front of the doors to enter a train when you see a crowd of people inside the train who want to get out? Also, I get quite annoyed when I'm having to stop on the left side of the escalator because someone in front forgot that the left side is for the walkers and the right side is for the ones taking a bit of a break from all the walking. And then I often get distracted by loud talking or people listening to their Ipods on maximum volume.
Ok, so here is how I've come to deal with it all:
- I've started looking at people as bright lights. Yes, the bright lights represent their souls in my mind.
- All I see is this bright light, not how they look on the outside: their face, their hair, their clothes, their posture, etc.
- Maybe it's their aura I'm trying to connect to?
- As I look at each person this way, I breathe deeply like when I'm meditating. Et Voila! The agitation that was beginning to form inside me simply disappears.
As for less metaphysical ways to deal with the stress of other people getting in your way, here are some perspectives:
- the people who stand in front of the door of the train as you are attempting to get out - SMILE at them, not a cheeky smile, but a sincere smile. I believe they put themselves there to be acknowledged even if they don't know why their feet planted themselves there. It's our souls at work.
- the people who stand on the left side of the escalator - they're trying to tell you to give your body a break, breathe deeply, and use this brief delay or pause in an otherwise rushed day to collect your senses and perhaps to focus on the people sharing the ride with you.
- the people who talk like they're talking through a megaphone or when they're playing their favourite punk band song on their IPods at a kajillion decibels of screaming noise - When I'm trying to read or when I get lost in my thoughts, it's a distraction. BUT, whatever brings you back to the present, in my mind, is no longer a distraction. All those sounds here before us are examples of life unfolding, and when we allow ourselves to be present and to witness all this life like flowers blossoming in spring time, we can really sense the preciousness of life, and how fleeting it is. Those distractions are gifts given to us to bring us from the insides of our heads, and to experience life fully. It gives us the opportunity to move away from our own self-centered view of the world, and see how others experience life.
True, it might annoy you even more, especially if you have an exam that you're studying for on the train or an interesting book you're trying to focus on. But our souls give us away...our souls want us to embrace life as it plays out in front of us. Our souls wish us to see other souls as they dance, laugh, talk, cry, and stare at us in these metal capsules that move us from one "box" to the next. It's in the in between where we have the chance to reclaim the gift of an ever-present life.
Monday, February 8, 2010
Solitary Confinement in the Prison-Justice System
I just read a very disturbing article on the Prisoners' HIV/AIDS Support Action Network on solitary confinement and what it essentially does to a person.
Solitary confinement is often used by prison authorities to punish prisoners who break rules or demonstrate violent behaviour. In a single day, close to 1000 inmates were in solitary confinement in prisons throughout Canada. A report was written by Correctional Investigator, Howard Sapers:
"Psychiatric studies have repeatedly found that inmates become increasingly unhinged under conditions of isolation. They have trouble concentrating and frequently experience hallucinations, distorted perception and panic...The article said that inmates feel a sense of intolerable frustration, anger and rage, which may lead to fantasies involving violent revenge against their jailors. 'Psychosis, suicidal behaviour and selfmutilation are commonly seen among prisoners in
long-term solitary confinement'."
I understand that the situation in Canadian prisons can be quite desperate, especially when there are overcrowding issues and the sharing of space of people with varying degrees of criminal behaviour from not so serious to very serious crimes. However, severe punishment only perpetuates violence and does nothing to heal these men and women.
When are we going to learn that this form of justice only creates more of the criminal mindset? Our communities will never be safe as long as we continue to support a system that causes even more pain and suffering, and does nothing to provide support and assistance to those prisoners who have survived their stay in prison, and who have come out to be part of society. What lessons will they have learned from their experience in the Canadian Federal Prison system? What are the chances of these men and women repeat offending? The chances are pretty high...
We are constantly looking for the answers outside ourselves when really things can only change if we start to change our attitudes and show more compassion to all of humankind. The more compassion we have in our communities, the less people will resort to desperate measures to get what they need and want.
Of course, there will always be people who fall into a life of crime...but again, it's not JUST their fault. It is also the fault of the society they were raised in and what society's response was to them when they were in need of support and assistance.
We're not islands. There's a reason why people are messed up and it's not because they're anomalies, it's because we were all a part of making them that way.
Solitary confinement is often used by prison authorities to punish prisoners who break rules or demonstrate violent behaviour. In a single day, close to 1000 inmates were in solitary confinement in prisons throughout Canada. A report was written by Correctional Investigator, Howard Sapers:
"Psychiatric studies have repeatedly found that inmates become increasingly unhinged under conditions of isolation. They have trouble concentrating and frequently experience hallucinations, distorted perception and panic...The article said that inmates feel a sense of intolerable frustration, anger and rage, which may lead to fantasies involving violent revenge against their jailors. 'Psychosis, suicidal behaviour and selfmutilation are commonly seen among prisoners in
long-term solitary confinement'."
I understand that the situation in Canadian prisons can be quite desperate, especially when there are overcrowding issues and the sharing of space of people with varying degrees of criminal behaviour from not so serious to very serious crimes. However, severe punishment only perpetuates violence and does nothing to heal these men and women.
When are we going to learn that this form of justice only creates more of the criminal mindset? Our communities will never be safe as long as we continue to support a system that causes even more pain and suffering, and does nothing to provide support and assistance to those prisoners who have survived their stay in prison, and who have come out to be part of society. What lessons will they have learned from their experience in the Canadian Federal Prison system? What are the chances of these men and women repeat offending? The chances are pretty high...
We are constantly looking for the answers outside ourselves when really things can only change if we start to change our attitudes and show more compassion to all of humankind. The more compassion we have in our communities, the less people will resort to desperate measures to get what they need and want.
Of course, there will always be people who fall into a life of crime...but again, it's not JUST their fault. It is also the fault of the society they were raised in and what society's response was to them when they were in need of support and assistance.
We're not islands. There's a reason why people are messed up and it's not because they're anomalies, it's because we were all a part of making them that way.
Monday, October 26, 2009
One of These Days - The Dream Blog 2
“Ruby, you have to sing out!” It was late on a Saturday night. The rock opera band was rehearsing in a rundown makeshift studio on the second floor of a car repair shop and tensions were running high as opening night drew close. I was going through my usual bouts of insecurity, being surrounded by all the pros, and two other very gorgeous back-up singers who were way more sure of what they were doing or at least pretended to be as such. We were actors after all. Also, by that time, my crush for Brad had developed into full-fledged this-is-a-guy-I-definitely-need-to-have-to-get-close-to. I was feeling the fear, and the lack of confidence that seemed to rear its ugly head every time I was in the presence of greatness. Brad was great. The band was great. The girls were great. I was the weak link, trying to get my vocals to match and sound powerful. I didn’t want to face the fact it was kinda out of my league, but I persevered despite the humiliation. It didn’t occur to me that Brad might have made things easier by having our parts clearly written out rather than expect us to join in whenever it sounded right. The woman who was doing the musical direction and accompanying us on keys pointed this out, but she too was a big fan of Brad and gave him carte blanche to take his artistic vision wherever he wanted. He was the visionary rock n’ roll artiste, "Beelzebub", and things were not so structured in his universe. This oddity enamoured me even more, and I found myself being drawn to his orbit.
After the rehearsal, Brad drove me and one of the other pretty back-up singers who was actually playing the female lead in the play. Something magical happened that night when she asked Brad to drop her off at a friend’s instead of her home which was close to mine. I thought he would drop me off first, and was disappointed that I wouldn’t get a chance to ask him out for a bite to eat. My chance was staring me smack in the face as soon as the girl was dropped off at the friend‘s. I moved myself into the front seat. We were driving back into town, and I had to act fast.
“Um…do you feel like getting a bite to eat?”
“Sure.” That was fast!
To be continued...Blog 3
After the rehearsal, Brad drove me and one of the other pretty back-up singers who was actually playing the female lead in the play. Something magical happened that night when she asked Brad to drop her off at a friend’s instead of her home which was close to mine. I thought he would drop me off first, and was disappointed that I wouldn’t get a chance to ask him out for a bite to eat. My chance was staring me smack in the face as soon as the girl was dropped off at the friend‘s. I moved myself into the front seat. We were driving back into town, and I had to act fast.
“Um…do you feel like getting a bite to eat?”
“Sure.” That was fast!
To be continued...Blog 3
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