December 15, 2008...4:20 am

Coco’s Journal #26: The Silent Thief

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December 24, 2008

The past two days have been a whirlwind of emotions and hurdles. One moment I thought it would be my last day to see everything, then waking up to the same what I’d seen before the procedure.

How did it get to the point where I feared being completely blind in that instant second to being reassured of it for just a little bit more?

VSO had sent me home through the holiday kindness of AXA insurance because of worries from all sides after I’d told them about the brown spot and half-moon blur. It was determined that Nigeria’s medical care was not appropriate for my Usher Syndrome conidition and that Canadian medical care was the best choice for me.

When I saw Dr Lapointe, my opthalmologist, she did a thorough examination using different ocular and vision tests, from field test to drops to color illumination lights. The field tests determined I was losing some degree in my field vision, and that the half-moon blur and brown spot in the middle was an unfortunate side effect of deteroriation from retinitis pigmentosa.  For that, there could be nothing done.

However, that was not what alarmed Dr. Lapointe. Through the final series of tests, she discovered a far more serious problem: angle closure glaucoma (google it up).

Angle closure glaucoma, basically, is a condition that suddenly robs one of their vision because the angle in the back of the eyeball, which transmits optical images to your brain, is getting narrower and then closes.

The side effect is said to be disturbing. When someone suffers from an attack of a full closed angle glaucoma, the feeling is compared to a heart attack. The pain is mainly around the eyeball area, leading to the brain. It can be very painful, but does not affect brain activity.

But if not treated within 12 hours, especially in foreign countries like Nigeria, I could have lost all ability to see, and suffering a blitz attack on my eye. The thing is, we’re all grateful that Dr. Lapointe diagnosed this problem before anything like an attack occured to me in Nigeria. The prospect of that is frightening, and it’s as if an angel is watching over me.

The laser treatment was less risky than the surgery done on cataract patients, they actually go under the knife. Laser is quick, a patient can go in and out of five minutes. No hospital stay. However, Dr Lapointe had not done this kind of procedure to eliminate glaucoma on a RP patient. To prevent an attack, I told her to go ahead. Despite that there was a possibility that it’d be taken away forever, like a silent thief. Maybe the laser was too strong for my retina and damaged whatever vision I had left? Catch-22 reared its ugly head.

I underwent laser treatment at the Ottawa General Hospital, I had an interpreter and my father also attended. Dr. Lapointe explained to me the procedure, and the information she had gathered from two retina specialists and one glaucoma specialist. We agreed upon a communication system to use in the dark examination room.

I would look into a machine, and there’d be a red laser aimed at the very  pupil of my eye. It’s been dilated large, and frozen. Dr Lapointe touches my knee one, two, three times and then presses. It’s code for electric shock.

I saw the red laser come into my pupil. My brain transmitted the image to an area of my brain that recognized red. I breathed in, out, in, out. Om, ahhhh. I had gone through a difficult 2 days thinking about everything I’d loved seeing/watching all my life, the faces of people I’d loved and who I’d never get to meet. Wishing I could see the Taj Mahal or the foot of the Amazon before I become fully blind might not be possible in a few seconds. I felt so scared. My heart was in my throat. Would I open my eyes and be able to see out? Would it be a repeat of 2004? Do I need to learn Braille again? All these people wishing me the best.

All of a sudden, I swear to you all, I felt such a strong surge of positive energy, coming in from all kinds of directions. The emails, the instant messages, the wall posts, and calls from strangers, high school and college friends, family, volunteers…. they were in the hundreds. I’m not kidding. There was that many. I was blown away. And that helped me get through the procedure because I know no matter what happens, I would still have all of you around me, taking care of each other and give me the strength to go on without sight.

One. Two. Three. BZZZZZZZZZ!

Whoa. That felt like a mini jackhammer hitting the back of my skull. Click. Click. Click. It went on for like, twenty seconds. I sat there, breating in, out, in, out.

A gentle squeeze on my shoulder signaled I was done. The doc took out the plastic, gelly thing that held my eyelids wide open. I closed my eyes right away, wiping the gel off the eye area.

Moment of truth.

I opened my eyes, and saw the silhouette of Dr. Lapointe in front of the dim light. I asked her to turn on the lights. The blinding flash pained my eyes at first, then they got used to it. I saw the doctor standing in front of me, her anxious face looking at me. I realized I could still see her face, dim blond hair and silver-rimmed glasses.

I turned around. I saw the interpreter. She looked the same as she did five minutes before.

My dad came in, and my brain registered the blue sweater he was wearing.

I could still see. Whoa.

I was elated. It was so close, it could have gone any way.

I have another appointment with Dr Lapointe tomorrow, and we’ll determine if the problem has been elimiated, and that the chances of me having glaucoma would go away forever.

It’s rare for someone with Usher Syndrome/Retinitis Pigmentosa to get glaucoma, it was a surprise I had it. This is to tell you that for anyone, it is important to see your opthalmologist and get everything checked out.

The outpouring of love and support has been extraordinary. I’m really humbled. Bless all.

Tactile love, namaste.
Coco

info:
http://www.healthprofessor.com/landers/macular_degeneration.php?keywords=glaucoma&referrer=Adwords&camp=HealthProfessor-MacularDegeneration&group=glaucoma&keyword=close+angle+glaucoma&traffictype=search&creativeid=3129515229&sourcesite=
http://en.wikipedia.org/wiki/Closed_angle_glaucoma

11 Comments

  • Thank you for sharing this with us. I am glad that your laser treatment went well. You have gone through so much. I hope and pray that you will receive good news from your Dr tomorrow. You have shown your compassion, dedication in helping other people. You surely did not deserve suffering like this. I look forward to hearing good news after your Dr visit tomorrow.

  • Ohhhhh! Tears in my eyes!!! So proud of you because you’ve been through so much and I can see that your bravery never wavered. Wow! HUGS HUGS HUGS GALORE!!!

    PS, all that support via emails and whatnot that came in for you… you totally deserve each and every single one of them. So many people love and adore you. Every one of us rooted for ya! XOXOXO

  • Cheers that it worked out! Glaucoma is so common that it isn’t unusual for US people to get it as they are two separate eye conditions. You go, girl and see all that you intended to see in the world and tell the rest of us about it!

  • I am so happy that everything worked out. You were smart by coming home to Canada to get everything checked out! ((((HUGS))))

  • Ma chère, Coca, you rock! Your courage is incredible! Please save everything you wrote as a form of your autobiography. I am thinking of you and keeping my fingers crossed tightly for you tomorrow. Stay as strong as you always have been.

    J’ai beaucoup d’affection et de respect pour toi
    Jean Boutcher

  • Dear Coco,
    I just discovered your blog today, and I’m SO very, very glad I did. You are such an inspiring, brave, compassionate person.
    First of all, I’m so happy to hear that your laser surgery went well.
    My sister has Usher’s Syndrome as well… And RP and she is functionally deaf, but I think she may be getting a cochlear implant early next year. She is now 13 years old, and we just found out this diagnosis last November.
    I worry about her so much. She just doesn’t seem to be motivated to do anything. She hardly gets through school work and has no friends. I wish she could see how you are thriving! But she has not enough motivation even to read your blog. :( It makes me so sad. :(
    I know that blindness is scary already, and it doesn’t happen until later anyway. But when I found out about her Usher’s Syndrome, I wanted to learn Braille straight away so that when it does happen, I would be prepared to be with her every step of the way. But my mother was upset with me because she wants to hope for continued vision and not think about Braille yet. I think I just like being prepared. I didn’t mean to hurt anyone.
    I would love to be able to meet you and get to know you better. Please, if you have any advice for me and my sister and my family, let me know via email.
    Thank you so much for this very positive blog.
    Love and HUGS,
    Luisa

  • So glad that everything went well. I am glad that you can communicate what is happening with your eyes, Rebecca is struggling with telling me what is happening with hers. We went to the Opthamologist because she has told me a couple of times that she can’t see and her eye is really dialated and swollen. It went away the next day but then it happened again. We went and they saw that her perpherial vision has deteriated greatly, but her central vision has remained the same. We got in to see a specialist but it will not be until May. Now we are waiting…

    I am so happy that you did not lose your vision completely. Ushers is a funny thing because you know that you will lose vision, but when it starts happening there is a great fear that accompanies it. You start feeling like there is more to see, more to learn, more to do before you lose it completely. At least that is how I felt with Rebecca – I wanted to scream “NO – you are only 10!! There is so much more to see in this life, slow down Ushers!!” But of course it does not listen to me, so we do the best we can with each day we are given.

    God Bless.

  • I’m so happy things went well. Many blessings to you and your family.

  • I’m so glad I found your blog. Thank you for sharing your story, you are quite inspiring.

  • I’m so glad that went well! Awesome you’re getting to travel the world like you want..


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