I am returned, though I never left.

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This has nothing to do with the article, I’m just a fan of Dr. Zoidberg.

Yes, I’m still alive and still running! I did 3.2 miles today, followed by an hour long upper body workout at the gym.

A lot has changed these past few months, but hopefully now that my life has calmed down a bit I can try to get back to putting the words in my head to print.. I can save the long winded story for another day, lets just cut to the end, which happens to be today. I was given an amazing job offer as a Contracts Administrator with the DCMA in Philadelphia at the Naval Support Activity. This is the first job since I’ve been diagnosed with Usher Syndrome that I really honestly felt like I was welcomed by everyone around me. All of the team members have been super nice and it being a federal job, it is more than accommodating toward my Usher Syndrome. I walk around with my cane, something I’d never done before at a job (or really in public) and it doesn’t feel weird. It’s just nice to know that there is an understanding of why I might have bumped someone/something. Where at my previous job, I just looked like a jerk and muttered sorry under my breath because I wasn’t using a cane, I felt like I almost had to hide at my old job. In a way, it only made me more and more reclusive then. Now, it’s completely the opposite and I can’t tell you how much that bodes for my well being.

My other first, is that I’m riding the city bus system of Philadelphia alone. Initially, it was a little unnerving. I’d never rode a public transport bus before and I spent my first few days anxious that I was going to miss my stops. Thankfully, my mom had come out for a week and we were able to do a “test run” before my first day so that I knew where exactly all my stops and bus transfers were. Now, if I start to look confused or lost, there has always been the kindness of strangers and the employees at the SEPTA Olney Transportation Station where my transfers are. I’m already on a first name basis with the driver that takes me on the final route to my work in the morning. I get the same driver every morning, Ernie, you rock.

Those are the two major things that are going on with me right now. Unless you want to count that my wife and kids are back halfway across the country until early June when the kids will be done with school and they will make the 5-6 day trek in the car to finally join me here in Philly. What have I been doing in my spare time? Going to the gym, practically every day of course! I probably spend almost 2 hours a day at the gym where our new apartment is. Mostly, it’s more productive than sitting at home watching shows on Netflix or Hulu. I run about 3 miles on a treadmill and spend an hour and half or so doing weights. It’s weird being all alone for really the first time in my adult life. I’ve been so used to having my wife and kids around that I really don’t know what to do with myself. So, gym rat it is for me.

More updates to come!

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I ran mad as all hell today.

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Everything started off about as normal as could be. I’d taken a break from working out because the kids were home on winter break, and it was hard enough to get my work done as it is. I gained weight, was starting to feel lethargic, and just not feeling right in the head as 2016 came around the block. I know i’ve been frustrated lately, it’s hard living with a disease that no matter what you try to do to make things better, all the effect may be is that you’ve slowed down the loss of vision and hearing a bit. Yeah, I should take my small victory, but it still feels like I’m losing a war of attrition.

So, with the kids back in t he school, I did what I needed to do. Laced up my shoes, put on my shorts, running shirt, beanie and sweatshirt and got my ass outside. The air quality is terrible right now, it’s what we get for being completely surrounded by mountains, all the smog, industrial pollution and such gets trapped in this bowl until a strong enough wind blows it all out. I stepped outside to the deary gray clouds that hung overhead. The chill of winter quickly biting at my hands and nose, there is still a crunch in the snow that hasn’t melted out of my driveway on the way to the sidewalk. I look up ahead of me and made a mental note of all the sections of sidewalk that aren’t shoveled clear. Even before I started, I found my shoulders squared, set like a linebacker ready to either take a hit or deliver one. I wasn’t even sure what the heck was my problem when I started running.

My thoughts kept wandering. What am I going to do this year? Am I going to get a job with all the expensive graduate courses I’ve been taking to jump-start a new career? Am I going to find something else to do? Will I ever get my short stories or novels finished and published? Will I do something that makes people proud of me?

My left shoelace kept coming undone. On the fifth time I had to stop and tie it, bending down once again, one knee on the pavement I looked up. Loudly, in a residential area, I cursed. You can guess the four letter word, giving the word enough extension that it had a lasting effect as the word seemed to sit in the air, hanging there when I was done and the silence settled back in. I wasn’t even a mile into my run and I already wanted to turn around and go home.

But, I didn’t.

I squared my shoulders again and just kept running, there was a long section of sidewalk were nobody had shoveled it for a while. Snow piled up past my ankles. I could have gone around it, but you know what? I was mad, didn’t care, and stomped my way through the snow. Kicking it up all over until I got back onto clear pavement. On the running trail near my second mile, it was clear as day on the ground, but I found a few small pillars of ice/snow that had settled next to the path.

I kicked them as I ran past. Some hurt, they were more ice than snow, those got a second or third kick as long as they stayed in front of me. I had the trail to myself, nobody else was stupid enough to run in this bitterly cold Utah morning. I couldn’t feel the cold anyways, my body was warmed up. I just had to keep hacking up the dreadful pollution in the air. As I got near to home, I still went out of the way to stomp through the snow and ice instead of staying on the side of the road. My thoughts kept bouncing around; annoyed at having Usher Syndrome, annoyed at stagnation, annoyed at letting my activism for this disease wean, annoyed at the stupid snow on the sidewalk. I made it home, shoulders squared and all, feeling a little better after the run. I went inside, drank some water and punished myself with the heavy curl bar and dumbbells I have.

I honestly don’t know what spurred all this. As I’m sitting here in my office. Late at night, writing my story of the day, the reflection seems confusing to me. Maybe in the start of 2016, I just have to get my head sorted out first, I just know that I’ve been doing everything I can to set my path on the right direction.

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Excuses, Excuses

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I’m tired, I’m too busy, I gotta help with the kids, I got WORK deadlines, I got HOBBY deadlines, I got SCHOOL deadlines, I’m slightly hung over, my back hurts, my knee hurts, my head hurts, I think I ate too much last night, it’s too cold outside, it’s too hot outside, it’s raining, my shoes suck, I don’t have any clean workout clothes, I don’t have time to shower after my run, coffee and work actually sounds better than dragging my ass outside at the crack of dawn.

 

Yeah, I’ll be honest. I’ve gotten lazy in the last month.

 

Just when my daily 5k (3.2 miles) was starting to become a breeze, I was *finally* under 200lbs after sitting around 205 for <em>months</em>, my weight routine was starting to pay off with muscle definition and my confidence was sky high. I just stopped.  It was, take a day off here and there, that eventually just lead to well, excuses. Today, I had to take a deep breath and say to myself “God damn it, Ryan. Get off your ass.” Yeah, I really said that in my head. I got tired of feeling like I was slipping back into old bad habits, feeling out of shape and just mentally putting myself in a bad position.

So, I ran. My legs hurt, my breathing was off, but I did my 5k. I drank some water and hit the weights really quick and called it good.  You know what? I felt sore, but I felt my confidence. I ate an apple and oatmeal for breakfast, a nice sandwich for lunch and felt no need for snacks, chocolate, sugars.  Running changes me for the better in so many ways, yet it was too easy to slip and let it slide. Running helps my eyes, it makes me work hard to make sure I have a clear path, that I don’t fall off a curb or miss one entirely. I honestly believe that running and exercise is what has kept my Usher Syndrome from progressing rapidly since I was diagnosed. Now, I have to dust myself off, fight through the soreness and get back to running, I hope you’ll be there with me as I turn another corner on this adventure.

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Own the Equinox – Day 21

 

Yes, there is quite a discrepancy in the days between my postings.  I’m still logging my 3 mile runs three times a week. It’s just that finding something substantial to say after each is rather…hard.

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Heck, I’m still not even sure what to write today.  I’m still going forward, I’m still running, I’m still pushing my limits.  I am looking forward to Saturday and doing my long run! Though, my son makes Dutch Pancakes every Saturday, I’ll have to hope he leaves me some.

If you are looking some something that you can do to help promote Usher Syndrome Awareness and give those of us going Deaf-Blind from this disease, here are some things for you to check out!

Vision for a Cure – This one is close to me, because it is run by my own family members! Vision for a Cure rises money every year for Usher Syndrome research focused solely at Westerfield Laboratory within the Institute of Neuroscience at the University of Oregon.

Usher Syndrome.org – This is essentially THE group that is furthering everything for the Usher Syndrome community.  The Usher Syndrome Coalition has lead the way into getting the US Government to get funding for the disease and is the main catalyst for community building.  They had originally planned to raise 25k during the Own the Equinox campaign, but since that got met has expanded to 50k!

Social Media – Use your Facebook and Twitter using the hashtag #USHEQX and say something about the disease, be a conversation starter or just point people in a general direction. JUST DO ANYTHING (um, legal) to raise awareness! Oh, and make sure on September 19th, you help us OWN THE EQUINOX!

 

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Own the Equinox – Day Nine

It’s been nine days of so many people with Usher Syndrome doing amazing things to raise awareness for the upcoming World Usher Syndrome Awareness Day on September 19th! The Usher Syndrome Coalition Blog has been highlighting a different person each day to share their stories. If I can’t inspire you to be an advocate for the deaf-blind with Usher Syndrome, maybe some of them can.

From my personal achievements, today I logged in another three miles, which combined with my Monday three miles, I’m sitting at six miles for the week.  Yes, I WOULD have run yesterday, but morning schedule would not accommodate. Plus, it’s still blazing hot here in Utah for late afternoon runs. Yes, I did get lazy over the weekend and skipped my Saturday and Sunday runs. I’ll most likely have to skip my run tomorrow as well. An appointment with an audiologist in the morning to get my hearing aids tuned will do that to you.

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While I’m on the topic of tomorrow, I might as well get some giddyness out and talk about going back to school.  I was accepted into the Weber State University MBA program to get a Contract Management Certificate.  I’ll be taking three credits until late October and then another three credits to close out the year.  The goal is to have the last two classes for the certificate completed in 2016 when they are offered.

I’ve been wanting to make a major career change for a long time now.  Trying to find a field that fits well with having this disease is almost in a way next to impossible. I have no idea when or even if I will be fully deaf-blind in the next five, ten or twenty years. You can’t plan a career around that, especially with your family looking at you to be the one supporting the household. So, I went with something that I’ve always loved to do, which is business. The reason I chose this Contract Management Program being offered by Weber State is because after looking around me, I think the program gives me the best tools to find a position that will provide for my family and give us stability.  I’ve seen statistics that show that 80% of people who are deaf-blind are unemployed. From the amount of adults that I’ve met with Usher Syndrome, I’d say from who I know personally, it’s about 50% in my known group.  Still, that’s a high number.  From talking to people and personal experience, finding a new job with our disease is a monumental task in itself.  There are very, very few workplaces beyond a state or federal agency, (typically one that deals with disabled people) that is very consistent with hiring deaf-blind or a word I hate to be associated with, “disabled” (I’ll write about that soon). We spend our whole lives building our skill-set, and educational knowledge only to find ourselves looking at job positions that make you feel vastly overqualified and underutilized. I or anybody else should never have to take a pay-cut, or take a position that is beneath our skill-set just to have a job that can be more accommodating to this disease. To me, it sometimes feels like you either need to be employed at a job before your diagnoses and try to hold onto it at all costs. Regardless of how it could negatively impact you in the long run. Cross your fingers that your employer is compassionate and finds ways to accommodate you while still giving you active roles to grow in the field. If we have to dive into the job market we sometimes have to question ourselves in every job interview if you should tell them about your disease or not. I know where I want to be, and it’s time to take that leap of faith to get there.

I’m trying what’s best for me. I’m going back to school, getting this certificate and pursuing my career by hopefully getting a job on a federal level as a Contract Specialist or wherever this certificate takes me. It’s easy to let this disease keep you from doing the things you are passionate about.  Right now, I’m passionate about my family, my education, being an Usher Syndrome advocate and my training.  Hopefully I’ll be adding my job to that list soon, because what I’m doing now just isn’t cutting it for me.

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Own the Equinox – Day Three

Yes, I ran yesterday, another three miles to be exact. I just lost track of time on sitting down to actually write about it.

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Today I’ve done my third, three mile run this week. This brings my three day total so far to nine miles this week. Will I be able to keep this up every day until September 19th? I highly doubt it! Ha Ha. I’m sure tomorrow (Saturday) I might be able to squeak out a mile with the family  and I know Sunday, glorious lazy Sunday will get a big “meh”.

Something that I think people should know is that when you are doing something like this, there is room for reality. Making changes to your routines isn’t as easy as it can seem. Especially when it comes to trying to do one mile a day walk/run. Just remember that when you allow yourself a day of rest, to don’t let that mentality sink in. Finding partners can have a huge influence as well, it’s only a mile! Grab your spouse, friend, family member and walk a half mile somewhere, turn around and go back. At most, it will probably take a half hour out of your day.

Remember, that you can help everyone with Usher Syndrome “Own the Equinox!” Use the hashtag “USHEQX” to talk about it, check out my first post for some more information or go directly to the UsherSyndrome.org website that explains Usher Syndrome as well! Also, check out my page on the Own the Equinox site and donate to the cause!

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Usher Syndrome, Own the Equinox – DAY ONE

 

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Yes, technically this started yesterday for the Usher Syndrome community, but we’ve been having this air quality issue in Utah. All those fires in the Pacific NorthWest have descended upon us, and left us with a haze that has lasted more than a week. Today was the first time I could see the mountains clearly, so I finally got outside and did my run of three miles, followed up with my weigh training I do at home. Thanks for the curl bar and weights, Dad!

I haven’t stopped running since my last update in June, but I did get very lax in my updates. Some weeks I’ve been able to get my minimum of three runs in, some weeks at least one. Utah summers are dry, extremely hot and not conductive for being outside. Part of the reason why writing has become harder is that I’ve found that I have been complicating myself from a writers standpoint. I tend to be very critical of myself in a lot of aspects. I wanted to bring to the table something that could be inspiring every time, putting a piece of myself and what I’m going through with Usher Syndrome into every post.

It’s easier said than done.

I never felt like I was running out of pieces to give, its just a combination of feeling like I was rehashing the same thing over and over, with the emotional drain that come from writing those types of pieces. I know I have to just stick to what I know, let those big impactful pieces come when they do, but don’t be afraid to just keep plugging along with what I view as “boring updates”. Now that I was asked to help with promoting the Own The Equinox it’s giving me the push to stop having such long gaps between updates.

September 19th is the first Global Usher Syndrome Awareness Day. Each day from now until then, we’ve been asked to walk/run a mile and just talk about it on social media. Why a mile? Recent studies have shown that regular exercise of at least a mile per day is extremely beneficial to people with Retinitus Pigmentosa (the going blind part of Usher Syndrome). It’s not a cure by all means, but it can slow the progression. I can say that from my standpoint, I’ve been regularly running for at least the past four years on an off and on basis. These past two years I’ve been very consistent with running two to three times a week. At my last appointment with my retina specialist last November, he told me that my progression from Retinitus Pigmentosa has actually been very stable in the last three years, with no significant drops in vision loss. Is it because of my running? I don’t know, but if there is a chance that everything I’ve been doing for fun has been making an impact on my vision loss, you can bet I’m not going to slow down.

So, help those of us going deaf-blind from Usher Syndrome OWN THE EQUINOX! Why The Equinox? In the northern hemisphere, the autumnal equinox marks the start of days that contain more darkness than light. It is a great metaphor for the threat of Usher Syndrome. You can check out the main website HERE from the fine people that run the Usher Syndrome Coalition (they are making the biggest impact globally for Usher Syndrome) and donate to the cause (they are already nearly halfway through their $25,000 goal!) Get out and run a mile or two, or three! It’ll be fun for the lead up to September 19th, I look forward to getting back on track to sharing my life with Usher Syndrome with all of you!

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