Friday, May 01, 2009

Operation Raising Cane

I have session two behind me. (I used “raising cane” in the title in reference to learning…kind of like raising kids. You make mistakes and learn.)

First thing we did was to go a few blocks away, to an area nestled out in the neighborhood jungle. I felt self-conscious, hoping that no one would recognize me from my “good weather” jaunts with the dog(s). (Yeah, “coming out of the closet” is a hard thing to do. If I don’t know them, it doesn’t bother me half as much as it would if some stranger, like a cashier, knew me as a regular customer at a store. I guess this is also something you just have to get out there and deal with it till it gets somewhat easier.)

Hubby came along for about 15 minutes to learn the sighted guide routine. Once he got that down pat, he was free to go.

After looking at the address system in town and gauging how much I can see in the distance (i.e, traffic lights four blocks away and how far I can see cars in the distance ahead of me or behind me and whether I could read address numbers and street names), I got to practice caning at the local mall.

I still need work on being “in sync”. Here my athletic prowess shines through NOT. Winks. It’s more that I am focusing too much on all the things that I have to do (keep hand by my stomach, move the wrist left to right while staying in step. I tend to “overstart”. I take my first step a bit too long and swing the cane too far and then I lose it. Or I move the “magic wand” too fast and I am not walking as fast to keep the pace and then I am out of step again. As I said before, it takes practice. Some people are a natural. Some are a quick study and pink up on things fast. I’m just one of those who need to work on it. Sometimes I can tell when I’m not doing it correctly. I feel “off-balance” and know I need to straighten up somehow. It is a challenge.

*Many thanks to my Usher friends who are cheering me on and giving me enocuragement that I'll "get there" because some have "been there". (((Group HUG)))

I wanted to make a minor correction from the previous post (which I already editied). The folding cane usually has four or five sections, not three. I was thinking that the top part is called the grip, the body of the cane is called the shaft, and then the bottom is called the tip. (Don’t to confuse “tip” with being the top. In this case, it’s the bottom.)

I don’t know if I mentioned this or not, but a few months ago, I noticed I couldn’t read the paper. I got frustrated and didn’t read it for a few weeks. I didn’t know if it was age-related or if it was the RP progression. So I called the clinic, but my regular ophthalmologist retired. Oh, bummer. I hate starting over with a new doctor and go through the process again. Then, weirdly enough, I could read the paper again. It wasn’t blurry and I didn’t have to squint too much. After that, it fluctuated-one day I could read the paper and the next, I couldn’t. What’s up with that? And since Flare was getting migraines all the time, I thought I’d make an appointment at a local discount store for an eye exam for both of us. Maybe Flare just needed glasses and with all the reading she has to do for school (besides reading tons of books that interest her-right now it’s the Cirque de Freak series). So, it turned out she needed +2.25 OTC (over the counter) reading glasses. (Contact lenses may follow.) Her major headaches are gone. She’s not missing classes. There’s still some catching up she has to do, though..

As for me, I only needed a +1.00 OTC reading glasses. Anything stronger and it was blurry. It did magnify what I needed to read. I still have days where I can read better on my own than others.

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Here’s a couple videos about a woman with Usher syndrome type III. Since it wasn’t closed captioned (cc) and there is no transcript available (for my deaf/hard-of-hearing readers), I have included her brother's blog about it below so you can read what it was about.

First video:





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This is the most important story I've ever told. It's also the toughest. My sister, Rebecca, is smart, kind and hysterically funny -- truly, the most remarkable and impressive woman I've ever met. She works as a practicing psychotherapist and to make ends meet she teaches 15 spin classes a week. She does all of it despite a disability that's robbing her of her vision and her hearing all at once.

Stop for a second -- think about that! Doctors have told my sister she will likely go completely blind and deaf within the next 10 years. As my sister describes it, "It's like I am slowly being taken from the world around me -- like the end of an old Warner Brothers cartoon on TV where the picture becomes an increasingly smaller hole until it finally fades to black."

Rebecca has a rare genetic disorder called Usher syndrome, type III. It is among the cruelest of disorders -- progressively stealing normal life away from roughly 16,000 people nationwide. And, currently, there is no treatment or cure. Rebecca lives courageously each day with the hope that a cure will be found before it's too late. My family and many others are determined to help through our involvement with the following organizations.

An extraordinary research effort is already underway through the "Usher III Initiative" at Hope for Vision where a dedicated team of scientists is focused on Rebecca's specific disorder. I recently spoke with Dr. David Saperstein, Scientific Director of the Usher III Initiative, who says their researchers are working on a multi-faceted approach to slow or halt the disease's progression, including the development of a targeted drug and gene therapy.

In addition, the Foundation Fighting Blindness funds research on a broad spectrum of retinal degenerative diseases, including Usher syndrome, and was involved in the important early work that helped characterize the gene that causes Usher syndrome, type III.

I asked my sister to share some personal stories about her experience living with Usher syndrome, type III -- her fears and the challenges she faces:

Second video:





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More from Rebecca...

There isn’t an hour that goes by where I am not reminded or challenged by my loss of vision or hearing, but this is my life and these are the cards I was dealt. I'm not frightened by the progression of my condition, but I am saddened by the things I can no longer hear or see.

I have the same hopes and dreams as any fully-sighted and hearing person and my dreams haven't faded with the progressive loss of my vision and hearing, but my disability has made me more driven and eager to take on each day. When I began to lose my hearing, I learned sign language and have found a sense of belonging among the Deaf and hard of hearing community. When I started coming to terms with the idea of going blind, I sought out a mobility specialist to teach me how to use a cane so when the time came that I needed it, I'd be ready. I don’t have time to sit around and think of all of the possible things that could happen to me. I simply don’t have time.

I have always insisted on living my life independently. So, it's been a challenge to ask for help from others. However, as my vision and hearing have continued to decline, I have become more comfortable asking for help. In fact, it's felt very liberating. It has allowed me to really connect with others and has enabled others to become more comfortable and open with me about their own lives. I'm incredibly lucky to have a wonderful, loving family and very loyal, close friends. The more I have come to accept myself and face my own challenges, the stronger my relationships with others have become. What I have learned is that we cannot live life on our own. We all need each other for support in so many different ways.

Sadly, many of my biggest fears already have been realized. I’ve been rejected by people I’ve dated when they found out about my disabilities. I’ve been left alone in a really loud and very dark bar by people who didn’t understand that I needed them to stay by my side. I’ve even been hit by a cab. You name it; it’s likely happened to me! But I can’t stop living my life because of the obstacles I face each day. My disabilities have made me passionate and energized to live my life to the fullest.

6 Comments:

At Fri May 01, 07:44:00 PM , Blogger Nessa said...

Both you and your sister are very courageous. It is not easy to deal with constant change.

 
At Fri May 01, 08:04:00 PM , Blogger Shari said...

She wasn't my sister. But, I guess we have a common bond. :)

 
At Fri May 01, 09:19:00 PM , Anonymous Kila said...

Again, I learn so much from your posts!

Your title cracked me up! Good one! Congrats on your second session, I'm proud of you :)

 
At Sat May 02, 06:41:00 AM , Blogger Beth said...

I can see how Rebecca's story inspires you - as you inspire me with your courage & determination.
I would be like you learning to use the cane - "the devil is in the details." I'd think almost too much as to what I needed to to do.
But you'll conquer that challenge too!

 
At Sun May 03, 10:25:00 AM , OpenID suddensilence said...

This is so interesting to me, Shari -- for some reason I imagined all of your practice sessions being held indoors, in the same room. Which is totally stupid, now that I think about it. LOL

What a great idea to learn in your home, your neighborhood and your local stores...all the places you normally go.

Loved the videos too -- thanks so much for sharing them!

Hugs,

Wendi

 
At Sun May 24, 12:56:00 AM , Blogger Jennifer Bruno Conde said...

Hey there, Shari!

I really enjoyed reading this post...both for you sharing the information of advanced caning training as well as Rebecca's videos.

I've been so busy with school and wasting...uh hum...I mean spending time on facebook farming, etc. (you know the stuff I'm into) that I'd been ignoring reading my friend's blogs and adding to my blog.

I'm taking care of that right now and have added a new blog entry myself. :-)

As always, I enjoyed your post and appreciate you sharing with us about the progression of Ushers.

Hugs,
Jennifer

 

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