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I have Spasmodic Dysphonia. |
To save having to say that mouthful every time,
we sufferers usually call it SD for short.
SD is a form of laryngeal dystonia. My laryngeal
muscles – those are the ones that operate my larynx and
control the way I speak – are constantly and involuntarily
contracting. As a result, my vocal cords do not function
properly.
This has impaired my voice so that the simple
function of speaking has become difficult. At times, my voice is
tremulous or weak and breathy. At other times, it comes out
raspy and hoarse. I have no control over it, so I have to think
twice before opening my mouth to speak. Either nothing comes
out, or I find myself shouting uncontrollably.
Stress, especially emotional stress, seems to
aggravate the symptoms. No one really knows the specific cause
of SD. And, as of the moment, there is no cure except, for a
temporary relief from the symptoms through an injection of
botulinum toxin every 4 or 6 months.
It’s terribly embarrassing when I meet people
for the very first time. People ask me what’s wrong with my
voice.
Some ask sympathetically, "Do you have a
sore throat?" Others simply blurt out, "What’s wrong
with your voice?" Some people jokingly ask if I sang in a
concert last night and ruined my voice. It can be very
hurtful when people say these sorts of things to me. It is,
after all, difficult to explain SD since it is a very rare,
seldom heard-of disorder.
And I find it so difficult – and embarrassing
– to have to speak in any case.
SD is frustrating and if you let it, it can be
extremely depressing. It is frustrating when you cannot express
yourself very well, when you can’t share your thoughts and
ideas with people because of your limited ability to speak. It is
very frustrating when people ask you to repeat yourself over and
over again. How I envy people when I hear them chattering
effortlessly, while I have difficulty getting the simplest of
words out. How I envy people when they can talk effortlessly
while I have to struggle just to speak through the spasms that
control my larynx.
And the realization that my life will never be
the same again makes me very frightened for the future
sometimes. SD has so limited my possibilities of leading a
normal life. I only developed this in September, 1995. Back then, it wasn't
diagnosed as SD. It was thought to be just a simple case of laryngitis but
the symptoms were already there.
At first, I had difficulty speaking loudly in class
whilst lecturing. My
voice still did not sound breathy then but it was very difficult
to speak properly and I'd run out of breath very quickly. It was
all right if I remembered to speak softly, but if I spoke
loudly,
everything went wrong.
Over the course of time, because I learnt
to cope with my deteriorating voice, I've developed a range of voice that is sometimes raspy and
breathy. Sometimes I
can make it sound without the hoarseness but I run out of breath at the end
of a sentence. So I have found that speaking in a higher voice register
helps a little.
Since I developed SD, I’ve had to change jobs
and radically alter my lifestyle. With limited voice capacity, I
have to limit also my social circle to friends who already know
I have SD and have gotten used to how I sound. When I meet new
friends, I try my best make them understand what SD is and what
it does to my voice so that they will also comprehend the
personality quirks that come with SD. I try to avoid going to
places where I’m likely to strain my voice. I deal with the
frustrations from day to day for there are good voice days and
there are bad voice days. It has become a daily ritual for me to
pray for a good voice today. And when bad voice days happen, I
refuse to let them bring me down, for who knows, the next day
could be better.
And what is frustrating, there are lucid moments
when my voice sounds completely normal – just like my pre-SD
voice, but this is beyond my control. It just happens. Even so,
I am comforted by this. A am reassured that my voice is still in
there somewhere, and it’s not completely lost for good.
I’ve discovered that writing is a very
effective way of dealing with my frustrations. Even though I can’t
speak properly, my writing is unaffected. I can still express
myself through the written word. Writing also has enabled me to
re-channel my negative feelings about my SD into positive ones.
When I’m writing, I can forget about my trashed voice and all
the frustrations that go with it. Through the written word, I
can talk as much as I want, and as long as I want. When I’m
writing, I can express myself well without struggling to speak.
And even if, only for a few moments, I can forget that I have SD.
I have discovered that there is always a
different way of doing something. It may not be your chosen way,
but if it gets you by, it’s all to the good.
Sitting down and being miserable, grumbling that
you can’t do something, only makes you unhappy. And it makes
everyone around you unhappy too. Getting on with it and working
out a way to do what you want makes you happy. And it makes
those who surround you happy too.
If I can’t say it, I write it! It works for
me. I am in control of my life.
SD certainly hasn’t gotten the better of me!
- Lani Estepa
San Juan, Ilocos Sur, Philippines.
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