Tag: usher syndrome

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WOTM 43 | Featuring Virginia Maze

WOTM 43 Featured Image Description is in the body of the post.

WOTM 43 | Featuring Virginia Maze

“Blindness does not have to be a curse. No struggle or trial has to be viewed as a curse. In fact, it will only a curse if you make it one. The trials we face are real, but it’s important to take a step back and find the blessings among them.” ~Virginia Maze

Women On The Move | It’s Not A Curse

Recent picture of Virginia Maze sitting in a car smiling for the camera wearing Aviator sunglasses.
Recent picture of Virginia Maze

Losing one’s sight is no walk in the park and I think it’s safe to say that no one would argue this point. In fact, many sighted people probably would consider it a curse. I know the younger me certainly thought so.

When I was 13, I was diagnosed with Usher Syndrome. This diagnosis explained my congenital moderate to severe hearing loss, something that was no big deal to me. In fact, I have embraced my deafness as a beautiful gift. A blessing. I enjoy being a part of two unique worlds: the deaf and hearing. I also love being able to turn off my hearing aids to shut out annoying sounds, like the roar of a vacuum, or when I just need some peace and quiet. But the diagnosis also revealed something else. Something that was looming on the horizon: I was slowly going blind.

Blind? How? Why? I could not see any good coming from my impending gradual sight loss. No, this was a curse.

Balancing Loss & Advocacy

Virginia is straddling the equator in Uganda. She is standing with arms outstretched in an upright circle that has "Equator" in bold lettering at the top of the circle.
Virginia straddling the equator in Uganda.

My vision has now progressed to the point where I am deemed legally blind due to no peripheral vision. And though it has been difficult adjusting to my ever-changing sight, I no longer view it as a curse.

I certainly still experience feelings of disheartenment, anxiety, and a desire for restoration. But through it all, I have been blessed with opportunities and friends that I would have missed out on if I did not have Usher Syndrome. Opportunities like:

I can confidently say that I have lived a fulfilled and satisfying life and I plan to continue to live a joy-filled life even when and if my vision completely fades away.

Blindness does not have to be a curse. No struggle or trial has to be viewed as a curse. In fact, it will only a curse if you make it one. The trials we face are real, but it’s important to take a step back and find the blessings among them. They are there, even if they are small.

WOTM 43 Featured Image Description:

Photo of Virginia at a strawberry picking farm. She is standing in a field of strawberries holding a bucket of the fruit. Virginia is casually dressed in blue jeans, navy ballet flats, and a navy & white striped long-sleeved, scoop neck tee.

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Seeing Without Sight

“Your life can be so great, but not when you can’t see it. So really open your eyes to life. To be able to see it in all the beautiful colours that the amazing Lord gave us, to enjoy life to the fullest, to make it count.” ~Mara Lauren

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Earlier this year Mara was featured on www.boldblindbeauty.com‘s  “Women On The Move.” One of Mara’s greatest strengths is her ability to see way beyond the lack of physical sight. She shares deeply profound and genuine aspects of life from the perspective of a woman living with Usher Syndrome, an inherited disorder characterized by hearing impairment and progressive vision loss.

Does Mara have bad days? Yes, she does, even so, because she appreciates this marvelous gift of life she plows ahead through the pain, disappointments, and fears to share her remarkable journey with the world by encouraging us no matter what to keep going.

Be present and enjoy the moment denied to so many others who didn’t make it to this day.

Have an amazing weekend!

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WOTM 34 Featuring Mara Lauren

WOTM 34 Featured image description is in the body of the post

WOTM 34 Featuring Mara Lauren

“No disability should hold us back from anything our hearts desire.” ~Mara

Women On The Move | Change Your Mindset, Change Your Life

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Hi, my name is Mara Lauren. I was diagnosed with a rare eye condition called Retinitis Pigmentosa (RP) in 2010. Recently, I was diagnosed with Usher Syndrome, which not only includes vision loss but also hearing loss.

When I was first diagnosed with RP it was a big life-changing experience. I was told I was going blind and there was nothing I could do to prevent this. The initial diagnosis by a Doctor who had little education on the subject was very callous. His uncaring approach made me feel hopeless and lost, which caused me to go into depression for a 2-year period. That depression stage of my life was tough as if I didn’t want to live anymore.

Feelings Of Isolation

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The feeling of being alone, not knowing what will happen and what the future would bring really hit me hard. I disconnected from the world and the feeling of not wanting to live anymore was always on my mind.

Eventually, I with the right people. The right specialists who helped to give me hope and let me know this eye condition shouldn’t stop me from living the life I want and it wasn’t the end.

Mara

In 2014, I started to really look at my life and I knew I had to change my mindset. That this depression was the jolt I actually needed to start focusing on what really matters and to completely revamp my life by staying positive. It was at this point with the help of my caring husband by my side, I have done just that.

Kicking It Up A Notch

I started getting involved with The Canadian National Institute for the Blind (CNIB) as a support group leader, I am part of The Foundation Fighting Blindness(American and Canadian organizations), also I have recently joined Trailblazers Tandem Cycling Club (a registered charity, who provides recreational cycling to people who have limited or no vision).

In the summer of 2016 I conquered Cycling For Sight, a fundraising event with The Foundation Fighting Blindness to find a cure for degenerative blindness. This was one of my biggest accomplishments thus far because it has been one of my goals since being diagnosed, it wasn’t easy but I was able to complete the 91km event.

Now that 2017 is here, I have signed up to do the full race of 180km Cycle for Sight that will be held in June 2017 and signed up for different activities that I want to try. So you have to wait for it and see what I’m up to!

 

Catching Up With Mara

Mara

I will also try to blog more this new year and you can find me on atemara.com or simply my Instagram, atemara. Outside of social media, I pretty much keep myself busy with all the organizations I’m involved in and I try to live a fit active lifestyle by working out and eating healthy, but of course occasionally I must indulge.

Another big aspect of my life is traveling, spending time with loved ones and just enjoying life to its fullest. I always say, no disability should hold us back from anything our hearts desire. We can still do it all.

WOTM 34 Featured Image Description:

Photo of Woman On The Move Mara in boldblindbeauty.com’s WOTM template. She is looking very stylish wearing fashionable shades while sitting outdoors holding a coffee cup in her right hand. Three-quarters of the template contains the photo and in the bottom portion is Mara’s quote in teal text.

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A Lil’ Inspiration #8

The Profound in Simplicity

Quoted text is white against a transparent teal background overlaid on a black and white photo of trees in the fog with a solitary woman walking among the trees.A little more than a week ago I posted a quote by one of my friends and Woman on the Move, Susan Rodgers. Today’s quote is by her twin sister Sherri.

Sherri and Susan were born with Usher Syndrome, an inherited disorder characterized by hearing impairment and progressive vision loss. Prior to meeting Sherri and Susan I never met anyone with Usher Syndrome however that didn’t prevent us from becoming quick friends.

Together and for several years in a row, the sisters would walk with me and my team to raise money for the Foundation Fighting Blindness. Together we would advocate on behalf of those with sight loss through our membership in the Pennsylvania Council of the Blind.  Together the sisters gave me encouragement during my low points as I journeyed into sight loss. They are the reason I began using my white cane.

Sherri makes a simple yet profound statement on living with Usher Syndrome:

“I’ve been a member of the Western PA Association for the Deaf/Blind (WPADB) for at least 15 years, being a part of the group I knew a few people but had to talk to them through an Interpreter. If you’ve never had this experience it can be quite challenging.” ~Sherri Rodgers (Sherri and Susan are lifetime advocates who continue to work and live very fulfilling lives).

Image: Quoted text is white against a transparent teal background overlaid on a black and white photo of trees in the fog with a solitary woman walking among the trees.