Saturday, 26 July 2014

When I Lost My Voice

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it.

It was in January that an academic society I belong to began preparing to induct several new members. My society leader approached me, and asked me to speak at our ceremony. I was very apprehensive- though it wasn't a long speech, it would be said in front of many of my fellow peers. But I accepted anyway. I practiced for a very long time, and at rehearsals I was made to repeat and correct myself despite no one else being guided as much. I didn't pay much attention to anyone else's speeches, because I was too busy preparing myself for mine.

On the night of the induction ceremony, everyone was dressed primly and properly, and donned ceremonial robes and shawls (I know, it sounds like a cult). Once the ceremony began, I waited for my turn to speak. Once it was my moment, I stood straight and tall. I looked at the audience, took my time and spoke loud. I even tried to sound confident. After I had finished, I realised I did a good job and that I could speak if I had confidence in myself. Additionally, I listened to the speeches of my peers: many stumbled, stuttered, rushed and blushed (hey, that rhymed!). Maybe it wasn't just me.

I was approached by several people afterward and congratulated on a speech well spoken. I beamed. But my favourite thing I heard was, "Elizabeth, you have a beautiful voice: I wish I would hear it more." After being told my voice was ugly when I was young and then convincing myself of it as I grew older, it Was exactly what I needed to break my silence.

Polite silence is a way of life. I'm only just beginning to get my voice back, though I relapse back into  being quiet sometimes. There are lots of times I feel humiliated because I talked more than I should have. I apologise quite a lot for talking. But I realise that the most powerful thing a person has is their voice, and taking it away leaves one with very little.

Saturday, 12 July 2014

Dear Jenni

Dear Jenni,

I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me.

Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying medicines that controlled the disease and not just the pain. I've gotten all the scans I've needed, had surgical consults and more. You deserve just the same quality of care and attention.

I'm not particularly sure of what you should do, to be completely honest. Perhaps waiting for a new rheumatologist is the only thing you can do for right now. But it doesn't feel like it should be left at that- it is too passive a route. That is exactly why I share my reaction. Normally I'm pretty private about some things, but my anger for your lack of care will not be: This needs to be shared. There needs to be attention called to this problem. I hope by sharing this, more can be informed about this problem with healthcare that affects so many others as well.

Don't stop trying.
-Elizabeth