Facing Friedreich’s Ataxia – My Courageous Cousin’s Journey

Matthew in Sky I felt instantly reconnected with my cousin, Matthew “Vertueux” Potter, at a recent family gathering, and experienced something like no years prior; it centered around his notoriously contagious smile being all the bridge that I, personally, needed, despite the years that had passed (PLUS I’ll insert a shout out thank you to the wonders of Facebook!).

Flashbacks of  Little Matthew as a Gerber Baby look-a-like, then a spelling bee champion raced through my mind, and here he was again –  now 22 yo!  It took a few moments for me to reassess how to interact in real life with Matthew, as being that his physical handicaps  had  increased since the last time we had visited, I wanted to be sure that I was behaving in such a way that was of  help vs. hindrance.  While online you can “talk” a mile a minute, offline your interactions require a slower and more thoughtful pace, in certain cases.

As fellow online enthusiasts will understand, though, when you are communicative digitally, you tend to maintain a unique connection, hence not experience the need to “catch up” after a few years have passed!  Simply said, the digital world can, in various ways, serve as a portal for building or maintaining genuine connections, and in some cases like Cousin Matthew’s, the online world is quite an obvious lifeline of his!

When I saw that The Online Mom.com team (a site I contribute to) is joining forces during the month of July to support one other by sharing special causes that are near and dear to us, I found the timing quite serendipitous and hopped to the occasion!

Matthew, 2006

Matthew, 2006

Living With Friedreich’s Ataxia

Matthew, as well as his older brother, Jimmy, have the disease called Friedreich’s Ataxia, a genetic disorder that damages one’s nervous system and afflicts 1 in 50,000. The damage affects the spinal cord and the nerves that control muscle movement in one’s arms and legs (ataxia), usually leading to incapacitation and the full-time use of a wheelchair.  Other signs and symptoms include vision impairment, hearing loss, slurred speech, aggressive scoliosis and more.

The mental capabilities of people with Friedreich’s Ataxia remain totally intact, however, and because of this any resources possible to help give those that have this disorder the best quality of life possible, considering the hardships they must endure, can enhance their mental and emotional well-being in such profound ways!

Coping With the Disease 

I look at Matthew as an inspiration for many, primarily, because regardless of the raw deal he, along with his older brother, have had to endure, he still maintains his charm, charisma, humor, depth and mental sharpness and is continually building  online platforms and opportunities to “be the same-old Matthew, PLUS a li’l some some!” His attitude really speaks volumes to so many in his online/offline community and his family’s and friends’ devotion does, as well!

Just days after the family gathering, Matthew started dabbing into the world of blogging (a total no-brainer move if you knew him!), and we were both thrilled that his post for SDBM instantly began attracting several hundreds of visitors (in just a handful of hours)!  I can’t wait to see more of  what’s to come!

Praises to the Muscular Dystrophy Association

I am touched that Matthew is so open to share his experiences (interview below), and on behalf of him, his brother and his devoted family and friends (all quite impressed with the strides that MDA has made), I encourage readers to support the Muscular Dystrophy Association (MDA),  the world’s leading non-profit health organization sponsoring research seeking the causes of and effective treatments for neuromuscular diseases. MDA research grants currently are supporting more than 250 projects worldwide.

We at San Diego Bargain Mama will donate 10% of our July earnings to MDA and challenge you to do the same!

SDBM Interview with Matthew “Vertueux” Potter: 

Matthew, his parents and brother Jimmy, 2004

Matthew, His Parents and Brother Jimmy, 2004

How has having Friedreich’s Ataxia impacted your life?

That is a very difficult question. At first thought, I couldn’t even conceive of such an experience. My and my family’s lives are unalterably different due to this affliction. Quite frankly, if I were to wake up tomorrow without it, I would have no idea where to even begin. I feel so attached to my wheelchair that I’d be hard-pressed to identify myself without it.

I have no doubt that there are a host of studies that could be performed on my interactions with my chair. As for my family, they all support me and my brother unconditionally. My mother and father have devoted their lives to our well-being but as this occurs to a lot of disabled children, our conditions have destroyed their relationship.

On a somewhat of a brighter note, they have both found partners who are very understanding of our unique situation. Our grandparents, aunts, uncles and a medley of cousins have all shown a level of love and compassion, that were I not experiencing, things would be difficult to comprehend.

Honorable mentions are Tim, Tom, Jake and Toni E. as my second family, my oldest friend Sean W. and his family, Ernest and Gabriel M. and their family, Imaan R. and the Wheelchair Mafia.

Feeding the Ducks, 2005

Feeding the Ducks, 2005

Do you have any events that mark important points in time when your life course became significantly altered?

I was diagnosed with Friedreich’s Ataxia at age 7, at which time I was too young to comprehend what it meant for me. I began using a wheelchair at 14 and most recently, in August of 2012, when I was 21, my brother suffered a series of seizures that left him hospitalized for about a month.  That last one, in particular, was a very low point in my life; I’m tearing up just thinking about it!

How does one prepare for this, both physically and mentally?

Physically:  Get a ramp for your doorstep, handrails for your bathroom, wet-wipes for hands, keep straws for beverages handy, ensure that the walkways within your home are reasonably wide for a wheelchair, keep hallways well lit, and keep fragile things away from edges.

Mentally:  Always ask others in wheelchairs how they’d prefer to transfer and do what they ask; don’t question it, they’ve probably done it enough to know precisely how it’s done.

Matthew With Brother, Jimmy, 2004

Matthew Holding an Alligator. With Brother, Jimmy – Make-A-Wish Tip to Florida, 2006

What do you wish that those unfamiliar with your and others’ special needs know when interacting with you?

We’re people just like you, so don’t coddle us.  Also, allow us to be heard.

How, in particular, have you embraced technology and how do others with your and similar conditions depend on it?

The obvious answer is our powered wheelchairs, and were they not around, it would ruin many of our lives.

Also, I, myself, have designed and built my own computer. Originally for gaming, it allows me to write and reach a very broad audience and enables me to communicate with all of my family and friends across continents.

Make-A-Wish, Florida, 2006

Make-A-Wish, Florida, 2006

What would you like to see more accessible to those with the disease?

Public office.

What are you most proud of about yourself?

Probably my humor;  it will never fail me.

Given your limitations, what do you do to make something rewarding about each day?

I play video games and read. A lot!

What  advice do you have for others with handicaps, particularly for those who have limitations in expressing themselves and their needs/desires?

Do your best at everything, as the only expectations that you have to live up to are your own.

Homecoming, 2007

Homecoming, 2008

Despite your barriers, you have an unyielding spirit and have since you were a kid. What do you attribute to this and how can it transcend to others who have, perhaps, let go of that spirit that you wear so well?

I think the problem lies in feeling that you are in the worst situation in the world, and the solution is realizing that you aren’t.

 

 

 

 

 

Matthew Pirate Matthew “Vertueux” Potter is a freelance writer who covers a vast array of subjects, including but not limited to: video games, disabilities, technology, philosophy, and relationships.

Facebook: https://www.facebook.com/MatthewVertueuxPotter

Twitter: https://twitter.com/MVertueuxP

 

 

 

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Category: Community Connections, Guest Bloggers, Reviews

Comments (6)

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  1. Maggie May says:

    I think the problem lies in feeling that you are in the worst situation in the world, and the solution is realizing that you aren’t. –

    that was amazing.

    Thank you for this.

  2. Alexander Rhodes says:

    Matthew,

    I’m honored that you choose to be friends with such a loser like me! I’m going to share this article everywhere – you are a very inspirational person and I think people can really benefit from reading what you have to say. You don’t let your disability hold you back from enjoying life.

    Your quote: “I think the problem lies in feeling that you are in the worst situation in the world, and the solution is realizing that you aren’t.”

    Epic.

  3. moot says:

    i’d like to tap matt

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