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A Speech & A Revelation

Toastmasters would be appalled!

Recently I was invited to speak at a fundraising event hosted by Blind & Vision Rehabilitation Services of Pittsburgh (BVRS). Admittedly it’s been a while since I’ve last done any public speaking but I was pumped at the prospect of a presentation that would rival any of the Ted Talks (maybe a tad delusional I know, but let me have my moment).

Planner that I am, prior to the event I furiously wrote, edited, scrapped and repeated so many versions of my speech I lost count. This was my big moment, the outcome of which would hurl me into the stratosphere of greatness!

The venue was a charming 1920s renovated single-screen movie theater. Guest gift bags, multiple raffles with great prizes, buffet of delectable appetizers, drinks and a movie, made for a fabulous Girls’ Night Out.

On entering the lobby guests were mixing, mingling, and having a good time. I met so many lovely ladies, some of whom were very familiar with BVRS and others who wanted to learn more about the organization.

Eventually it was time to enter the darkened theater (thank goodness I brought my tablet which contained my notes or it could have been a very bad day). After Erika Arbogast, President of BVRS thanked everyone for coming and gave a few brief words on the event, she introduced me.

I didn’t think I was nervous but it’s the only explanation I can come up with for what happened next. One of the first things I learned on public speaking was to not begin with an apology, can you see where this is going? Yup, I explained something to the effect of how having a tablet as opposed to note cards was preferable, yadayadayada.

Then to my horror I lost my place on my tablet and drew a complete blank. As I heard myself uttering uh, uh, um, uh, I was simultaneously counting the ahs (a task learned in Toastmasters). For an agonizing minute that stretched on for what seemed like hours I totally lost my memory.

Plans to slay the audience were pushed aside as I had to regain my composure to carry on with my message. While I didn’t say all that I wanted to, giving up on the tablet and talking from my heart ended up being okay.

Many of us go through life trying to find out our life’s mission and here I was living my purpose and didn’t fully understand it until the other day. I’ve been an advocate (now Abilities Crusader) for many years but it wasn’t until May 3 of this year that everything clicked into place.

Twenty eight years ago my middle son, Devon, was born. Till this day I don’t know how my grandmother knew, but she said something was wrong with him. To read more on Devon check out A Shot in the Dark.

By the time Devon reached first grade his issues escalated requiring hospitalization from which the diagnosis of ADHD along with other acronyms was given. When he was placed in special education this was when my advocacy began—this was my purpose and this was the topic of my speech.

When I lost my eyesight challenges like putting on makeup, taking medication, getting in and out of the shower, preparing for work, shopping, watching television, walking the dog, being unable to distinguish bushes from animals or trees from people—everything was difficult. If I thought all of this was hard, coming to terms with not recognizing the faces of people I knew and loved nearly broke me.

Many times I wanted to give up but I am so thankful for organizations like BVRS whose Access Technology Program brought me back from the brink. It was through this program that a trainer came to my job and he showed me how to use technology to continue working. He introduced many solutions to make living with sight loss easier.

Little did I know that managing Devon’s issues through 12 years of school was the gift of my purpose to help him, others, and myself. By BVRS fulfilling their purpose of helping people with sight loss and other disabilities reclaim their lives, they’ve allowed me and many others to continue living our purpose.

BVRS focuses on abilities and they realize the importance of seeing people as individuals each of whom is born with a specific mission. The services they provide aid people in re-attaining a meaningful life. I will always be grateful for what BVRS has done for me.

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Letting Go of Control Saves Time

It Really Is That Easy!!

In view of my recent issues I really wasn’t planning on doing a post today but I just had to share something that in my opinion is earth shattering!! Yesterday as I was preparing the e-version of my monthly newsletter I happened on an article that changed my life.

Okay, so it might not be life altering and I ‘spose I could possibly be exaggerating just a tad but I was blown away by this one simple thing. Up until yesterday getting the newsletter ready to distribute was a totally manual process but then something enchanting happened.

For those of you are techno wizards you can leave now because the rest of this is guaranteed to bore you. For everyone else who wants to save valuable time while creating a fabulous newsletter, or just do a fancy smancy email campaign, hang on for a sec.

MailChimp to the rescue. After using MailChimp yesterday I literally could have kicked myself because being a tech addict I couldn’t understand why I didn’t understand how to use this application a year ago. Yes, you heard correctly. I signed up for the free version over a year ago and did nothing with it, instead what I did was waste time and agonize over the best way to create a newsletter.

So what did I do? I’m glad you asked. I set up my newsletter campaign, created the newsletter using one of MailChimp‘s lovely templates, imported my contact list (just a simple synch to my gmail account), tested, retested and presto change o with the click of a button the newsletter was sent. Also, while I’m not sure how well MailChimp will work with other screen magnifiers/readers, it worked beautifully with ZoomText.

Lesson learned: Sometimes things really are that easy but a skeptic (that would be me) will make it more difficult than it has to be. If you give MailChimp a go let me know what you think of it. ~Steph

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June is Cataract Awareness Month

Cataract Surgery Can Be Beneficial for People with Retinitis Pigmentosa

The Morning of Cataract Surgery
The Morning of Cataract Surgery

By Audrey Demmitt
I have Retinitis Pigmentosa and two years ago my retinal specialist noted on a regular checkup that I had developed cataracts on both eyes. The cataracts were sitting right in the center of my only remaining window of vision. They were the type of cataracts that are commonly found in RP patients. About 50% of patients with RP develop them.

My doctor explained that post sub-capsular cataracts or PSCs are located on the backside of the natural lens and the pouch which holds the lens and they tend to grow quickly. She recommended they be monitored until they caused a significant change in my vision.

It was not long before I was having trouble with close up tasks such as reading and the cataracts were significantly affecting my visual function.  Everything appeared dull and clouded as if I had blobs of Vaseline in my eyes.  My biggest struggles were reading the computer and my iPhone which I depend on heavily and spending time outside in the sunshine.  I decided to talk to the doctor about cataract surgery.

Cataracts in and of themselves are not a big worry and the surgery is one of the most common and successful procedures done today. But when they appear along with RP or other eye diseases, it is more complicated.  Since patients with advanced RP depend on their remaining central vision, there is much to be gained from removing cataracts. But no surgery is without risks.  As a nurse, I knew it was important to learn all I could about cataract surgery and consider my options carefully. I began to do a bit of research.

I wanted to know what the risks were of losing the rest of my vision and whether I could expect improvement in my vision if I had the surgery.  I visited VisionAware’s section on cataracts and the message board. Then I talked to my optometrist and low vision specialist.  We discussed my eye history, and my hyper-myopia and how that may increase risks. In the end, he said he believed I had more to gain than to lose in doing the surgery. He referred me to a cataract surgeon who was well-known to him and who seemed best suited to my case.

By the time I met with the surgeon for a consult, I was well-informed of the risks of this procedure. My goal was to preserve my ability to read my computer and iPhone with my low vision devices for as long as possible. The surgeon examined me, ran tests and took measurements. He declared that he believed I “was a good candidate for the surgery and would do well.” My surgeries were scheduled two weeks apart. I was sent home with a packet of instructions and prescriptions for eye drops to be started the day before surgery.

The morning of my first procedure, I felt nervous about having someone cut on my eye, but I was also confident in my doctors and in my decision. They all discussed my case and had my best interest in mind. There was a lot of discussion about which intraocular lenses would be best and what the prescription correction should be.

Eye Shields and Eye Drops
Eye Shields and Eye Drops

Previously, I wore contact lenses that corrected my vision to an intermediate focal point, allowing my low vision devices to work well for me. When I want full correction for distance, I add a pair of glasses to complete my prescription. To read or do close up tasks, I use prism magnifying glasses. With just my contacts, I am able to work on the computer (with Zoomtext) comfortably and do most daily tasks without any glasses. This has worked very well for me. Based on the pre-op testing, intraocular lenses that correct astigmatism in the same prescription as my contact lenses were chosen for the best vision outcome. I did have to pay out of pocket for this type of lens (toric) as it was not covered by my insurance.

The procedure went smoothly and was over quickly. I was given light sedation and was aware of a few sensations, but had no pain. At home that evening, my eye was scratchy and my vision was very blurry. By morning, it was comfortable and my vision was already clearing up. I visited my local eye doctor the next day for my first post-op check. The lens was in good position. There was some swelling which was to be expected and I did have an increase in my eye pressure. So the doctor said he would monitor that.

The next two weeks, I followed the post-op instructions vigilantly which included  administering several eye drops on a schedule, wearing eye shields to protect the eye,  and limiting physical activities as instructed. I had several more visits to the doctor for eye pressure checks. I was told this can happen due to swelling which blocks the drainage system in the eye. It is usually temporary and should resolve with healing and the medications.

On the morning of my second eye surgery, my eye pressure was too high in both eyes. I was immediately given eye drops to bring it down. The procedure went without a hitch, just like the first one. Within a couple of days, I was reveling in how much clearer my central vision became. I was so pleased that the gauzy film was gone, the glare improved and colors were crisper. With both eyes now corrected and working together, I was once again able to read my computer and iPhone.  A few weeks after surgery, I was reading 2-3 additional lines on the charts, which was very exciting.

It has been three months since my cataracts were removed. My intraocular pressures are still elevated and I am taking glaucoma eye drops. The doctors say I am what they call a “steroid responder” and this is why my pressures shot up.  They believe the pressure problem will resolve itself with time and I will be able to come off the eye drops. Of course, this was an unexpected outcome and there is cause for concern. But I am very happy with the improvement in my vision.  I feel as if I have dialed back time and got some vision back! And when you do not have much to start with, every bit of improvement can make a difference.

The preceding article was written by and republished with Audrey Demmitt’s permission in recognition of Cataract Awareness Month.