Breaking down barriers

Hello everyone, it’s been a couple of months since I have written anything but as you all know not every day is worth writing home about. I do however have an amazing story to tell about what has been happening the past couple of months. Six months ago I picked up a baseball bat for the very first time in my life never knowing that the game of beep baseball ever existed. I thought it would be fun to have something to do over the weekend and for me to get some exercise, little did I know where I would end up just a few months later. I can now proudly say that I have played in my first beep baseball world series, yes you read that right world series. 19 teams from all over the country including Canada and the Dominican Republic took part in the annual Beep Baseball World Series, which was held in Tulsa, Oklahoma this year. More than 200 blind and visually impaired players made their way to Oklahoma to spend a week on the field to make their mark and to set their place in the rankings. My home team the SGV Panthers weren’t able to raise enough funds this year to get the entire team out to compete in the World Series but I was invited to play with a team from Philadelphia called the Philly Fire.

I was absolutely terrified going into this adventure as this would be the first time that I would travel unassisted to a unknown destination where I would meet up with total strangers, and spend a week playing baseball with a team I knew nothing about. My anxiety levels leading up to my departure date to Oklahoma were in the red so I decided to go out and break down the barriers that were holding me back from just enjoying this adventure I was going on. One random Thursday afternoon I requested an Uber and drove to a random bar a couple of miles away from my house where I knew I would know no one just to see how it would all play out. This way I would still have the reassurance that if anything went wrong at least there were a couple of people that I could call if something did go wrong. The driver dropped me off outside the place, I found my way inside and was promptly helped by the bartender to a chair where I celebrated this small victory with an ice cold one. This might not make sense to some of you but just doing something simple as that gave me the confidence and courage to know that I would be okay traveling 1200 miles away from everything and everyone I knew in America. My safe place. The day of my departure came along and my beautiful wife greeted me at the airport and wished me luck on my adventure. This would be our first time apart from each other since moving to America so it was kind of a big deal for the both of us. When traveling unassisted as a blind person you can request travel assistance from almost any airline where you will be helped to navigate through the airport from the check-in desk, through security, right onto the aircraft so I was not too worried about that. The fun part would start when I landed in Tulsa, Oklahoma. When I arrived there I was escorted from the aircraft, through the airport terminal, straight to baggage claim where an airport attendant help me retrieve my bag then guided me outside to the curb side where I would need to wait for the hotel shuttle. From here on out I was on my own. This all went smoothly as I had pre-arranged with the hotel when to expect me at the airport. The shuttle drove me over to the hotel, I got my room key and then I met my new team mates for the first time. From the get go I knew I was going to have a blast as everyone was friendly and real fun to be around from the moment we met.

From that moment on it was all baseball for the entire week ahead. Some days we spent more than 9 hours out on the fields, in the blistering heat with average temperatures in the hundreds about 35/37 degrees Celsius and some days being evacuated off the field because of the storm sirens going off. Philly Fire ended up ranking 12th in the World Series and one of our teammates Mike, receive the prize as the third best defensive player in the series and one of my fellow SGV Panthers players Bee, received the prize for rookie of the year.

2019 Philly Fire World Series team photo

I know I’m not alone when I say this but I definitely feel this experience was more than just baseball, it was a week where blind and visually impaired people could just be themselves and have fun with no one judging them or criticizing them. It was a week where you could make mistakes, get lost, walk into stuff and just laugh about it all, because you were surrounded by hundreds of other people doing exactly the same thing.

A visual information company called Aira opened their hearts and sponsored their services by making the host hotel a free access location for the entire week that we were there. How it works is you download the Aira application onto your mobile device you register for free then you can call up a trained professional via video call to help you with any task at hand, be it reading a menu at the restaurant, helping you enter the combination to unlock your suitcase, finding a missing shoe, identifying the right uniform to wear on game day or even just to tell you that your hair looks good. This service helped me out a lot as I used it some days just to find my way around the hotel walking to the breakfast room or going outside the hotel to meet up with some friends. Today the 14th of August, Aira has announced that you do not need to have a paid subscription to make use of their services anymore, all calls under 5 minutes are now free for all customers.

The whole trip was such a freeing experience and I heard from a number of other people that the world series is like their vacation once a year. Something they look forward to and save up for so that they can have the best experience. I am also one of those people that cannot wait for next year’s World Series, to go back and meet up with all the new friends I have made that week. I must say I was really glad when it was all over because I was missing my beautiful wife so very much and I wish she was there with me to join in the great experience. Now I’m back in Los Angeles and have started a new round of testing with the Orion cortical device. I went back to the CTRC, the clinical research and translation center where we are trying out some new things to further develop and refine the device. We’ve already made progress with just one session there by adding some more of my electrodes back into the mix. I’m excited to see what will happen in the sessions to come.

If I had to share one lesson that I learned about this entire adventure it would be that when you feel like you are stuck and afraid to move forward just take a few steps back to put things in perspective. Sometimes you just need to see things from a different viewpoint to see how to move forward. There will always be a way to move forward even if you have to turn around just keep moving and enjoying life!

Don’t quit, do it!

I still haven’t told you guys about our 4th of July trip to the Grand Canyon and our first experience on a cross country train so I will be writing about that in the next blog.

Thanks for reading.

Love Jason and Sue

Life is better when you do it together

April has come and gone and slowly we can start greeting the cold winter nights that has kept us in doors for way too long. Evenings bundled up under a blanket in front of the TV are being replaced with warmer days, baseball games and nights spent with new friends. It’s been a busy month for the two of us over here in Los Angeles and it feels great to have things back to normal. Sue back at work and me filling up my days between the Braille Institute and testing at UCLA. I’m not gonna lie I do miss being with my amazing wife every day and I think the both of us had a little bit of separation anxiety but all good things come to an end eventually. We had a good run spending basically every day for an entire year side-by-side doing everything together and getting to know this new crazy city. I definitely think we have grown more accustomed to the way of life over here and I’m sure we don’t stick out like a sore thumb anymore when walking around in our neighbourhood. I still remember spotting the tourists back home, seeing them with that lost expression on their faces when walking around. I imagine that’s what we looked like when we started exploring our little part of town when we just moved here.

Each weekend has been filled with fun activities and mini road trip’s. I attended the Acura Grand Prix of Long Beach with two fellow South African friends, Campbell and Neil on Sunday, the 14th of April. It is the only street race held in North America. Similar to the Monaco Formula 1 race, the only differences being that the cars used at the Long Beach Grand Prix are Indy cars and not Formula 1. We spent the entire day walking around the track watching the race, in my case listening to the roaring engines. There was also an exotic car race where the coolest dream cars were racing each other around the track. Lamborghinis, Aston Martin, Corvette, BMW M6, Audi R8 and many more. It’s crazy to think someone’s dream car is another guys weekend toy to race around the track. I can’t even explain how loud it was, my ears still hurt the next day but it was worth it and something I will never forget.

We also attended a couple of baseball games. The one was in San Bernardino which is about an hours drive from Los Angeles. The Inland Empire 66ers were playing the Lake Elsinore Storm. It was a disability awareness night where our team, the SGV Panthers, had a stall to tell people more about the sport of blind baseball and create awareness about our team in Southern California. The other game was our very first Dodgers game at Dodger Stadium. Our friend Eric, a fellow Panther player got us some tickets for the game as he is a season ticket holder and a huge Dodger fan. Sue said we had the best seats in the house with a stunning view of the impeccable kept field as well as the mountain range in the background. They were playing against the Pittsburgh Pirates. Not only did the Dodgers win the game, they also set a new record so we were very proud to be supporting the Dodgers and we think we have found our team. I was wearing the Orion device at the game to test out what I would be able to see in such a large crowd. The dodger Stadium can seat 55,000 people and although it was not jampacked there were a hell of a lot of people. At the end of the game they had a fireworks show and because of the device I was able to make out where the fireworks were exploding. It was not like watching a fireworks show when I still had my sight but it gave me just as much joy. Just the fact that I could see a multitude of flashes in sequence was something very exciting. I could also use the device to navigate through the crowd more accurately. I could tell when I was approaching people, when they were standing still and also identify when people were walking past me or coming towards me. I find the more I use the device in situations like this the more I learn what it is capable of. Testing at UCLA is going very well. I just completed my 12 month assessment and I can tell you from seeing just one dot a little more than a year ago to what I’m capable of now is mind-boggling. The team is hard at work and we are continuously refining the system and learning of its capability while simultaneously figuring out ways on how to optimise and improve the device for the future.

The new semester has started at the Braille Institute of Los Angeles and I have taken up a couple of new classes. I’ve progressed to a more advanced cooking class, started taking Spanish lessons and also a rights and re-sources class, where they teach us more about what there is to offer for visually impaired and blind people in terms of assistance and the job market. According to the statistics only about 20% of blind people find employment in the open market which is very alarming seeing that there are more than 7 million blind people in the United States alone. I really think that if employers would just grant blind work candidates the chance to show what they are capable of they would out perform some of their sighted counterpart in a variety of different scenarios using learnt skills and with the help of some great assistive devices currently available on the market. The stigma of blind people is that they are incapable or incompetent to do daily tasks or even complex tasks that one would think is not possible for a non-sighted individual. But as we all know in life you have to prove yourself and push forward to get where you want to be in life.

May month also has some excitement in store for me as I will be playing my very first beep baseball game with the SGV Panthers against the Las Vegas 20/20 in Seal Beach on the 26th of May. If anyone would be interested to come and watch the game and see what beep baseball is all about you can find more information at http://www.socalbeepbaseball.org or you can find the team on Facebook or Twitter @sgvpanthers.

It might have taken us a year to get into the groove of things here in LA but we had to trust the process and are thankful for where we are today. We try to take advantage of the opportunities that come our way as we are well aware that life can change drastically within a heartbeat. Say yes to that trip, catching up with friends or to that piece of cake you’ve been craving.

Hope the month of May will bring everyone lots of opportunities, love and joy.

Love Jason and Sue

Lone ranger, the city is in danger

As we slowly pass the year mark of our incredible journey I can only look back in utter awe at what we have been through these past 12 months. From being two lost souls in an unknown world to where we are now carving out our new future together as a married couple.

As you all know, people don’t share the bad times with everyone. Go and take a look at the social media profile of anyone you know. We share what we want people to see, I mean let’s be honest who wants to read about someone sitting on their couch watching TV for days on end because they are too broke to go out and do something. If I had to write about all the crappy times my blog would be 50 pages long every month. So let me save you the misery and share all the good stuff that has happened this month.

In the previous blog we mentioned a man that we met at the Braille Institute that would greatly benefit by having a cell phone. Thanks to some wonderful people with the most generous hearts we managed to get him a brand new cell phone. It came as a total shock to him because he never knew that we were even trying to help him and he is so grateful for this big gift that he has received. He is currently receiving training at the Braille Institute on how to operate and use the phone to it’s full potential.

The Braille Institute is a wonderful resource that I am so happy we happened to stumble upon. There is so much to do and learn. I’m currently taking some cooking classes and a class called independent living skills where the teacher just shows us all the new gadgets and cool life hacks that make life easier for a blind person. Next semester I have enrolled in a more advanced cooking class as well as Spanish lessons. I’m thinking of taking a music class to learn how to play the guitar but I don’t want to get ahead of myself.

Sue and I attended an accessibility technology convention in Anaheim called the CSUN Convention. Exhibitors from all over the world come to display their inventions that enrich and simplify the daily lives of millions of visually impaired people. There were so many amazing products on display, too many to mention but there are a few that stood out for me. Obviously Second Sight, the company that is developing my device the Orion cortical implant was also there promoting their Argus II, a retinal implant that restores some functional vision. I am a big advocate for this company as I have firsthand experience in the life changing technology that they are currently developing and improving day by day. Another company worth mentioning is OrCam which has recently launched a new product called the MyEye 2, it is a device not much bigger than a lip balm that attaches to your glasses via a little magnet. The device can read written text, has face recognition technology, can scan barcodes and also identify currency. It’s a great piece of technology which can be used anywhere without any wireless or cell phone connection. The other two companies worth mentioning is working on software that can be downloaded to any smart device via an app, the first is called Seeing AI which basically does the same as the OrCam but it’s a free downloadable app. The other is a company called Aria it is a subscription service where blind or visually impaired users can call a trained representative via video call to get help with daily tasks including help with computer work. The representatives can access your computer via a program called team viewer to help you edit documents or help when you run into a problem with something. Like I said there were so many other very interesting gadgets but if you would like to go have a look, go check out the CSUN accessibility technology convention webpage to see a detailed list of exhibitors that attended the conference and Google those companies to see what everyone is up to.

My beep baseball skills are also improving week by week, our team the SGV Panthers have been invited to play against the inland empire 66ers at their disability awareness night on the 20th of April in San Bernardino. This will be a very big night for our team as we get to showcase our skills in front of thousands of people and also create awareness for the sport of blind baseball. 50% of all ticket sales will go towards our team to get us to the world series in July in Tulsa, Oklahoma. There we will battle it out against teams from all over the country as well as international teams from Taiwan. If you would like to read more about the sport please visit our website at socalbeepbaseball.org.

Testing of the device is going really well, we have started with some cool new tests where I have to identify the orientation of a bunch of lines on a screen, they can be vertical, horizontal or at 45° angles. This might sound insignificant but 12 months ago I wasn’t able to see anything, everything was just pitch black now I am able to see lines on the road so that I can use a cross walk safely, I can identify when I am approaching objects which I would normally walk into, I can see when someone is approaching me for instance other pedestrians on the sidewalk I can now tell when there is an electric car(so quiet) standing right in front of me so I don’t walk into/in front of them, it’s been a total game changer. The entire team at UCLA and Second Sight are working very hard on this device and I am so grateful to be a part of this trial. I know that this is going to change the lives of so many people in the future as it has already made such a positive impact on mine.

Sue and I also joined a connect group. It’s a group of people from our church that get together every second weekend at someone’s house where we just share our stories and worship together. We met so many wonderful people at our first group. We shared our story and poured out our hearts and everyone welcomed us with open arms. We love our new connect group family and it is amazing to hear so many different testimonies of how God is present and working in all our lives. We are thankful for the people that He puts on our path and for His perfect timing in doing so.

Sue has joined the workforce again so that has left me with a lot of alone time and has also pushed me to venture out into the city on my own, this has been very scary and challenging for me as I have had to overcome some of my own limiting beliefs. The other day I had to go to my classes at the Braille Institute but this time my beautiful wife was not able to go and drop me off so I had to make use of Uber. I have done this many times back home in South Africa but the difference was back home I knew where I was and I always had someone waiting for me at my destination. I knew I could do it but something inside me was just holding me back, that voice in my head making me doubt myself. I’m sure everyone has been there before. You are right there on the cusp of achieving something great but that self doubt is holding you back from reaching your goals. Leaving my comfort zone, our cozy apartment to venture into the unknown by myself causes great anxiety but I just keep telling myself the worst that can happen is that I can get lost. I might have to invest in an “If found, please return to…” tag. But until then I will just ensure my phone is fully charged so that I can just request an Uber to come and pick me up where ever I am and take me home back to my safe place. Besides, I’ve made some pretty awesome friends by getting lost in my life so that might be a good thing after all. I’m taking it slow but I’m sure the more I venture out on my own the easier it will become. Hopefully one day I will be as brave as some of the other students at the Braille Institute that have to take a bus and two trains just to get to the Institute. I’m not there yet but working towards it. If one person has done it, it is humanly possible.

We are all fighting our own battles. After what felt like a horrible February for us, with nothing going as planned, just feeling like we keep on bumping into walls and wanting to throw our hands up in defeat. We just knew giving up is not an option, we will get through this. We had Matthew Wilder on repeat and we kept on telling ourselves…”Ain’t nothin’ gonna break-a my stride, nobody gonna slow me down, oh no, I got to keep on movin”. And with that attitude, there comes March and it feels like a huge weight has been lifted off our shoulders, it feels as if the sun is shining a bit brighter and the birds are singing louder. Our lives are by no means perfect but we have to make the best of what we have and trust in His timing and the future that He has planned for us. Be there for one another, through the good and the bad…you don’t have to go through it alone and just remember to always keep on movin’.

Here’s to living life and appreciating all the little things.

Love Jason and Sue

Count your blessings

Hello everyone, it has been an eventful month for us over here in the USA. I can’t believe how fast February flew past but I am grateful it is over now. I feel like I have been on an emotional roller coaster these past few weeks with everything going on.  Let’s start off with some of the fun stuff we have been up to before we get to the heavy stuff.  

 

Our month started out less life changing then that of our awesome friends Shannon and Khuong who on the 2nd of February became parents to the most beautiful baby boy, little Felix.  Shannon and Khuong are not only our friends but Shannon is also a relative of mine that we only met for the first time in our lives when we came over last year to do the medical screening for the Orion trial. We were staying with them at their apartment when we received the news that I was chosen as one of the candidates for the trial and they have been one of our lifelines over here starting our new adventure in a new country.  A few weeks before the birth of baby Felix we were assigned the task to watch over Django, Shannon and Khuong’s furr baby, when it was time for Felix to come.  Sue and I were relaxing in the living room in our PJ’s when we got the message that Shannon was at the hospital and that she was going into labour. It almost felt like it was us having a baby, we immediately jumped up got dressed grabbed our stuff and off we went to go collect Django so that his parents wouldn’t have to worry about him when Felix was being born. He only spent a couple of days with us then he got to meet his little brother and I am happy to announce they are best buds from the second they met. We are so happy to have a little one around again as we miss our 3 nephews back home.  They bring so much joy to a person’s life.




I also s
tarted with classes at the Braille Institute and made some great new friends. Currently I am taking cooking, independent living and computer classes where they are teaching me how to use my laptop again and also how to transition over to an Apple computer which is much more accessible for a blind person. On our first visit to the Braille Institute we met a man there who touched our hearts deeply, he doesn’t even know how much meeting him impacted our lives. I was just sitting next to him in a waiting area when we struck up a conversation, you know the normal stuff, how are you, what’s your name, where are you from.  He quickly made us realise how much we have to be thankful for when he told us about his day and his story of becoming blind.  He told us that he lost his eyesight 8 years ago due to diabetes and that he also suffered kidney failure and currently undergoes dialysis treatment 3 times a week which takes about 4.5 hours per session. He is at the dialysis clinic at 3am in the morning to have his treatment so that he can just have a normal day and go to the Braille Institute so that he can attend classes to better his situation. Not only is this an immense task on its own he does this without the help of any assistive device like a cell phone.  This made me realise how thankful I should be for everything I have in my life. He is currently saving up for an iPhone, which is in my opinion, one of the most powerful tools for a blind person to have in their possession. It not only gives you access to an infinite amount of data out there in the interwebs but there are amazing free applications that you can download to help with daily tasks like identifying objects, reading written text, identifying colours, which helps with getting dressed.  Most importantly it gives you some of your independence back and gives you the ability to communicate with the outside world. You can only imagine how soul crushing it must be to be isolated from the entire world and to be confined to one place literally and figuratively in the dark.

 

For instance if I didn’t have my phone and the access to the web I would have never found out about all of the amazing advances in modern technology or have the ability to go and research the things I find interesting or helpful for my life as a blind person.

One of the coolest things that I have recently found was a blind baseball team called the SGV Panthers Beep Baseball Team which I am now a proud member of. I have only been to one practice so far but I immediately fell in love with the sport and the team including the wonderful people who organise and run the show. Some of the players travel as far as a 100miles (160km) in each direction by train or bus to attend the practice, another example of what you can do with the help of a phone with the right features, the possibilities are endless.

 

Sue and I also ventured out to a town called San Diego it is about a 2 hour drive from Los Angeles and is situated close to the Mexican border. We went to visit our friends Kim, a fellow Nelspartan and her boyfriend Jesus for some early birthday celebrations as we would not be able to see Kim on her actual birthday. They showed us around their beautiful city, we visited a part of town called Old Town where they show how it was like to live in San Diego in the 1920’s and consists of restored buildings from the 20’s up to the 70’s with a bunch of small restaurants and novelty gift shops. We also went to see the sea lions at La Jolla and took a walk through little Italy. There was so much more we wanted to do but sadly we didn’t get to everything, but we will be back soon to carry on where we left off.

 



When we arrived in LA
 a year ago we were told that it almost never rains over here and that there has been a drought for a number of years, it seems that has changed. I’m not going to talk about the weather but this is worth mentioning. These past 2 months have given the USA temperatures of -80˚F which is -62˚C, that’s colder than the temperature on Mars. More than 2000 houses have been destroyed due to flooding and mudslides caused by the rains and it snowed in Los Angeles for the first time since 1962. We are looking forward to the iconic California summers all those songs where written about.

Sue and I also visited a disability convention at the LA Convention Center in Downtown LA called Abilities Expo to see what gadgets and tools are new to the market but we quickly realised that it was more focused towards the paraplegic community. Nevertheless we had a blast exploring and learning about various new and improved kit for handicapped people and also found out about another event focused more towards assistive technologies for the blind called the CSUN Conference Exhibit in Anaheim which we are planning to attend in March.

 


Testing has been going well and I don’t
 really have any new feedback in that regard except that I learned that Second Sight is working on the Orion II prototype which is the next generation device that will hopefully replace these funky looking glasses I have now for something more functional and aesthetically pleasing to look at.  

Taking part in this trial has been one of the best opportunities I have ever been given but at the same time it has been extremely difficult for the both of us.  We have given up everything to take this leap of faith hoping that it would pay off in the long run. Don’t get me wrong, it has paid off already and there is bright prospects for the future but I cant help thinking back on what we had to leave behind in South Africa, our families, friends, our beautiful home, stable jobs, financial security, all of our belongings, basically everything we had. This month has tested us in ways we have never felt before and I’ll be honest there were times I considered just giving up and going back home to everything we knew, our safe place. We have been faced with obstacle after obstacle and at times we thought that we would never get our heads above water but luckily we have each other and a very strong support system that helped us through the difficult times. One major factor that gave us our strength to push through and carry on is our church and the powerful messages we receive every time we go there. It feels like the sermons are specifically written and preached to give us the hope and power to shake off the chains that are holding us back from achieving what we need to. Being blind has its obstacles and limitations but most of those were there for me when I was still sighted. What I am trying to say is, don’t let your current situation determine your destination. Life is tough no matter your situation and we are faced with difficult obstacles in our lives so that we can learn how to appreciate the good times. One day you will be able to look back and laugh at the times you were crying and feeling that the whole world is against you and realise that you had to go through that phase of your life to get to where you are now.

Thank you to everyone that reads the blog and shares it with your friends. It has reached 69 countries so far, some countries only has one view and others like South Africa more than 7000. I hope it has created awareness that there is a glimmer of hope in the future that people are hard at work trying to find a way to restore some form of functional vision, a dream I had and am now so blessed to be a part of.

 

JOD stats

Here is a link to the blind baseball team’s website www.socalbeepbaseball.org if anyone wants to make a donation towards the team’s costs. Donations will go towards reserving a field for practises, playing games and to make it possible for the team to attend the National Beep Baseball World Series in Tulsa, Oklahoma, July 28 – August 4, 2019.

Another request I have is if there is anyone out there that has an old iPhone gathering dust in a drawer, that is willing to donate it to us, we will make sure it gets into the hands of someone whose life it would potentially change for the better. There are so many people out there not only here in America but across the world that would benefit so greatly form it.

Thank you for reading my ranting’s and if you have any questions please don’t hesitate to send me a mail @ thejourneyoutofdarkness@gmail.com.

 

Love Jason and Sue

Festive cheer and the brand new year

Hello everyone sorry for being so quiet for the last couple of months, you know how crazy things get over the festive season. We have so much fun things to share with you all and in order to do that we will have to go back all the way to November just before Thanksgiving. I will try to keep it short and sweet but at the same time tell you as much as I can remember. I’m not a professional writer but I will try to link together how we accidentally watched a drag queen show and experiencing a white Christmas is quite a difficult task, here it goes…

It has been a wonderful yet challenging nine months for the two of us. Having to immigrate to a new country, being newlyweds and having to start over from scratch again, adapting to a new way of life has been emotionally tiring at times and having to leave our home and everything we know behind hasn’t been easy but I thank God every day that I have been sent this angel of a wife that has stood by me through thick and thin.

 

I would encourage anyone that is planning to immigrate to do proper research and planning before making the move. It is a major adjustment and shock on the system to be thrown into a different world of things that you are not accustomed to and it can also be very costly, if like us you are coming from the country of the mighty Rand. If it weren’t for our parents supporting us we would never be able to make this new life and new adventure a reality but we are hard at work trying to find our own feet.

My cousin Shannon and her husband Khuong, who we stayed with when we just arrived in the USA, are expecting a little bundle of joy due any day/minute now. We attended a very fun baby shower and we tried our hand at making a diaper cake for the jungle themed celebration. The shower was hosted by some of their friends at their home in the Hollywood hills, it had the most beautiful views and at the same time the most scary driveways we have ever seen. The Uber driver didn’t even want to turn into their street because it was such a steep downhill. Nevertheless we enjoyed a wonderful day celebrating the coming of a new family member.

Our friend Danielle, who we met at Thanksgiving dinner, is the host of a Golden Girls trivia night at a place called Hamburger Mary‘s in West Hollywood. She invited us to come and join in on the fun even though we had zero knowledge of the Golden Girls. We did do some homework before going and watched an hour-long documentary on the Golden Girls so that we would at least have a shot when playing against the other teams but we never stood a chance as we were playing against some diehard Golden Girls fans. After the trivia night we stayed to have a drink and catch up with Danielle and get to know some of her colleagues at Universal Studios. Little did we know that we were in for a surprise as the music started playing loud and we are in the middle of a live drag queen show, so what choice did we have but stay and enjoy the show. If you are ever in Los Angeles and would love to see an amazing high energy performance with some awesome deep fried macaroni balls, Hamburger Mary’s is the place to go.

 

Danielle’s colleague Cara was able to give us tickets to experience Universal Studios and we were so thankful as it was something that we had wanted to do since we arrived in Los Angeles. It also came at a great time as we were able to celebrate my 7 year Blindavercary on the day. We spent the entire day there, we were some of the first people to walk through the gates when they opened and we were some of the last people to leave the park after closing time. We managed to ride every single ride that was operational and saw every show they had to offer, we watched animal actors do a performance, we saw how they set a man on fire, drank Butterbeer at Harry Potter World, witnessed a plane crash into the water at the Water World. We met some famous characters including the minions, King Julien, Homer and Marge Simpson and Optimus Prime. We went on a studio tour where we drove through Wisteria Lane, the Whoville (luckily no Grinch in sight), got to see what Jaws does when he spots a scuba diver, was in the middle of a car chase from Fast and Furious, survived the flood in small Mexican town and so so so much more it is a definite must do when visiting Los Angeles.

We also managed to make some other new friends but the funny thing was that they were all named Santa Claus. Scrolling on Facebook we came across an annual Santa Claus pub crawl called Santa con and we decided that we just had to join in on the fun. We joined about 300 other Santas to spread the Christmas cheer all over Los Angeles be it walking on the sidewalk, riding the train or just playing games in the park we had so much fun and I think we will make this a yearly tradition. 

 

The Sunday before Christmas we attended the Hillsong LA Christmas Extravaganza which was held in a beautiful theatre at the Ace Hotel in downtown Los Angeles. It truly was a great production and we are so proud to be part of the Hillsong LA family. It helped to remind us again what the true meaning of Christmas is all about – He is the reason for the season!

 

We are really blessed to have made some good friends over here and we are very thankful that they have included us in some special moments of their lives. Our friends Kaitlyn and Campbell have really made us feel so special over the entire festive season, inviting us not only for a spectacular Thanksgiving dinner but also treating us to a proper home-cooked Christmas Eve feast. We always have such a great time over at their place in Long Beach and they always make us feel right at home even though we had been longing home to be with our families over Christmas. 

 

Sue and I decided to drive up into the mountains to a small town called Big Bear Lake on Christmas day to go and see some snow. We definitely weren’t the only people that came up with that brilliant idea that day as it took us 4 hours to get there, where it usually only takes an hour and 40 minutes but it definitely was a wonderful experience. Even though we were only there for a couple of hours, it was more than enough for us as our South African winter clothing did not withstand the frigid temperatures up in the mountains. We enjoyed a lovely Christmas day lunch, took a stroll around town then we hit the road again back home which took us another 4 1/2 hours. At least our little Jeep has a mean heater and a good sound system so we made the best of our time in the car and managed to take off white Christmas from our bucket list.

 

For New Years we planned on spending a quiet night at home but no not here in Ktown. The people in our neighbourhood went all out with fireworks and someone managed to set a palm tree on fire with a rocket so we literally went into the new year with a big bang and was able to see it all from our rooftop.

 

Growing up in South Africa there are a couple of things that you would not think you would ever experienced in your life and watching a real life rocket launch is one of those things. It’s something that never was on our bucket list but was quickly added and then ticked off. Just a couple of hours drive from Los Angeles we witnessed a Falcon 9 rocket by Space X launch into the sky to deliver a payload of satellites. We were standing 4 miles (roughly 6 or 7 km) away from the actual rocket and it is difficult to explain how loud it actually was even with us being that far away. If you think about it, it does make sense as the rocket is the size of a 21 story building and weighs more than 700+ ton being blown into the sky. It only takes about two minutes from launch to the rocket being too far away to hear or see anymore but it was definitely worth the 4 hour drive there and back.

 

Progress on the Orion device has also been moving forward. Ihave had multiple visits to UCLA for weekly testing and tweaks. The more we have been using the device in our daily lives we have come up with multiple new benefits it has to offer. I’m now able to identify light, this has made it more easy to navigate without assistance in our building for instance carrying groceries from the car to the apartment is now something that I will be able to do by myself which is a major plus because now I can use both my hands. Identifying objects on contrasting services has become really easy although I cannot see the shapes yet. We are hard at work with moving objects and learning to tell in which direction amoving object is coming from. I am also now able to distinguish whether or not a line is drawn vertically or horizontally and also have some depth perception but only at large distances. It is all still a work in progress and with only 10 months that have passed since the implant, I believe we are definitely making great progress and we are taking it on day by day.

Sorry for the long read, I will update the blog every end of the month from now on so to keep everyone updated with what’s happening. We really miss everyone back home but we are just as excited for all our friends to come and visit us on this side so that we can show them all the fun things we have discovered over here. That’s it from the two of us until next time.

Love Jason and Sue

Small victories

It’s been two weeks that I have had my Orion device at home with me. I’m only allowed to wear it for two hours a day just as a safety precaution seeing that we are the first people in the world to test out a device like this I can understand why they have given us these instructions. The first day we got home with the device I could not wait to put it on and start exploring and testing it out for myself. I put on the device pressed the on button and off we went. Sue and I were experimenting with all kinds of things, playing around, trying to figure out what it’s capable of, switching on all the lights in the apartment for me to point them out and count the amount of recessed ceiling lights, putting dark objects on light surfaces and vice a versa. Sue then told me to find two dark objects that she placed on our white bedspread, I then scanned the area and could easily locate and pick up both of the items, my cellphone and a small makeup bag. This might not seem like a major achievement to others however for myself, after 7 years of seeing absolutely nothing to this is life changing. It was the best moment so far, a small little victory and a glimpse of how this device can assist me in the future. Even though this was all very exciting, the only thing on my mind was to go outside. I just wanted to walk down the street to see what I would perceive in the outdoors. It came as quite a shock to me because the moment we stepped outside our apartment building everything went bright and I was not able to differentiate between light and dark objects anymore. It was obvious to me that it was because of the sun lighting up every object and surface outside. We took a walk down our street to see if it might change and I can only imagine what passersby were thinking. I was not looking at the same spot for more than a second, my head was all over the place left right up down just trying to interpret what I was seeing. I’m not going to lie it was very overwhelming at that moment and I wasn’t really focusing on what I was actually looking at, I was just following all the little dots lighting up in my brain.

I still have to go back to the hospital for weekly tweaks and updates and to give the team feedback but for now everything is running smoothly and we are having fun testing out the device. Things have progressed in leaps and bounds since the procedure and I believe there will only be more positive results to come. We truly have a wonderful group of people helping and supporting us throughout this journey the newest member being my orientation and mobility specialist Mickey who is helping me integrate the use of the device in every day tasks. He came over to our apartment and we did a couple of tasks while wearing the device. He placed different coloured and patterned cloths as well as different sized induvidual cotton balls on our table to see what I will be able to identify and which ones I could not pick up. We learnt a lot out of this excercise and afterwards we went outside again into the big big scary world. Mickey taught me some new skills that I could use when walking alone and how to cross the intersection. I was wearing the Orion the entire time however everything still lit up around me therefor I was relying more on my other sences to help me navigate. Later that week we went back to UCLA and the Second Sight team did some tweaks according to the feedback I was able to give them. And boy do I love these new settings. We went walking again and I was able to point out the outlines for the crosswalk at the intersections which will definitely be a great benefit for me as I could just follow the line and not vere into traffic. I was also able to say exactly where the sun was and when another pedestrian passed us, I must admit sometimes it was only a palm tree but I think that still counts as a victory. I would have loved to post some videos or pictures of me using the device but I think in the excitement of the moment we forgot to take any.

In between testing out the device we also did some exploring and ventured out to Agoura Hills to meet up with a family that comes from our home town in South Africa. They were one of the thousands of families that were asked to evacuate their home due to the wildfires just over a week ago. They were very lucky that they did not lose their home and came out unharmed. It is so very sad to think of all the families who did lose their home and some also lost loved ones in the fire, to see how close some people came to losing their homes, where the fires were stopped only feet from some of the properties and to imagine what they were going through at the time and the days after. They treated us to a lovely barbecue and a good old fashioned South African “kuier” we really had a great time and are looking forward to go and visit them again. It really is such a quite, relaxing area and Sue said it is absolutely beautiful.

We also experienced our very first American Thanksgiving hosted by our friends Campbell and Kaitlyn and let me tell you Kaitlyn pulled out all the stops, turkey, stuffing, cranberry jelly, veggies, a salad, fresh bread and the most important awesome company. We still had to leave some space for Danielle’s freshly baked brownies as well as Annelie and Neil’s delicious pepermint crispt tart. As per tradition we all took turns to tell each other what we were most thankful for in 2018 and I think it has been an tough year for many of us with so much to be grateful for.

I’d like to share a little thought with everyone, something that I experienced in the past two weeks that I think will resonate with many of you. I think sometimes we tend to have very high expectations and when we don’t get the results we were hoping for we see it as a failure. It’s so easy to look past the small victories in life because you did not reach your desired outcome. It’s like running a marathon, finishing it and then being disappointed that you did not do it in the time you were hoping for. Just take one step back and look at what you have achieved…you ran a freaking marathon. It’s not only a small victory it’s a great achievement, be grateful for your own personal achievement even if you think it doesn’t mean anything to anyone around you. Focus on your own race.

Love Jason and Sue

#HappilyEverEsterhuizen

We are back in the USA and man do we have a story to tell. September was the best month of my life! It’s been a while since the last blog post so be prepared this is going to be a long one.

Let me start off by telling you about my wife and my awesome month back home in South Africa, yes you read right my wife. It feels so awesome to be able to say that and I feel so proud to have such a strong and loving woman by my side. Let’s start at the beginning, as per any international trip there is that dreaded long flight for the two of us it was 10hr 20min flight from Los Angeles to Amsterdam followed by another 10hr 40min flight to our final destination, Johannesburg, South Africa. I won’t go into details but beware of those little bottles of wine, they might be free but at the end of the day you end up paying for it in the form of a very bad headache. Upon our arrival in Johannesburg we were greeted by my father who quickly loaded us into the car and handed us some sorely missed South African beverages and snacks. We made a quick stop to pick up my grandmother and off we went on our 3hr 30min drive and the last leg of the journey, home bound to Nelspruit aka Nelsparta. We arrived home at about 2AM unloaded the car, had a quick coffee with my mom and went to bed. The both of us were up again at 6AM ready to start organising things for our upcoming nuptials, bachelor and bachelorette parties that were all just in a couple of days. We didn’t have much time so we had to hit the ground running. Sue now accustomed to driving a left-hand drive on the right side of the road had to re-adjust to drive a right-hand drive on the left side of the road, a very daunting task with the little amount of sleep we had but off we went to our first stop to go and greet the in-laws and to find out where and what we had to do to get everything ready for the wedding. Let me tell you there was a list as long as my arm of things that had to be done in a very short amount of time but off we went to try and tick off one task or item at a time whilst making a few pitstops along the way to greet our friends.

The night before our bachelor and bachelorette parties we went to one of our favourite local spots called Phatboys Beer House in White River to meet up with a whole bunch of our friends who came from all over for the next days happenings. Our good friend Brian Wilkinson was performing live that night and man did we have a blast just catching up with everyone and having a good time, it was a good warmup for the next day. The next morning Sue and I said our goodbyes and went our seperate ways. This was the first time in almost 6 months that we were apart from each other, something we only realised a couple of days later. We are actually so blessed to have endeared that amount of quality time together. Not many couples get the chance to spend such a long time together with their significant other, uninterrupted 24/7 for almost half a year. It’s a time we both will cherish for the rest of our lives and it certainly made our relationship rock solid. Both of us had so much fun at our parties, we made some good memories and enjoyed every second that we could spend with our family and friends.

With that behind us it was full steam ahead again with wedding arrangements. At the time we were 20 days away and had about 2 month’s worth of things to do and in between that we had my wife’s birthday, my sister-in-law’s birthday as well as their wedding anniversary to celebrate so off we went to Marloth Park for the weekend. This was our very first combined family get away myself, my then fiance, her mother, father, brother, sister-in-law and their baby boy along with my father, mother, sister brother-in-law and their 2 boys. We rented a house next to the Crocodile River that serves as a border between the Kruger National Park, it was an amazing weekend filled with celebrations, laughter and the raw beauty of mother nature surrounding us. We were even greeted by a herd of elephants that were walking by the river. The weekend came and went by in a blink of an eye and by then we were left with only 13 days to go before the big day. We met up with the pastor, went to see the venue for the very first time, met up with the DJ, snuck in a couple of quick braais and had very little sleep to make the most of our time there. There was a few mini panic attack‘s caused by the bridesmaids dresses, they only arrived 4 days before the wedding and we knew somewhere along the line disaster had to strike and it did, in the form of three ugly pink dresses. Sue sprung into action and managed to find three beautiful dresses with the help of Billy from LVB Bridal Boutique. Finally the bridal party was dressed to the 9’s and ready for the big day. Sue and I were also invited to our local radio station, Radio Laeveld, to join Jo-anne and Neels on their morning show to share our story and to tell all the listeners about the amazing developments happening over here in the USA. After our time at the radio station we went straight to our next appoinment at our local newspaper, The Lowvelder, for an interview to share our story and what the future has in store for us. I’m so grateful for them sharing our story because somewhere out there, there is someone that can now live with that little bit of hope that one day there will be a breakthrough and they might regain some of their vision again. The same hope that I have always had in me that is now becoming a reality thanks to the study through Second Sight and UCLA. Between all of this Sue and I were crossing of items on our bucket list of favourites to eat in our home town, my ultimate favourite being a beef prego topped with the tastiest chili sauce in the world both the prego and sauce made by auntie Sao, a well-known legend in our home town. She also gifted us 7L of her famous chili sauce that we gave to all the gentlemen at the wedding as a thank you gift. Sue’s mother made a special batch of grandma Sannie’s secret family mustard recipe that we gave to the ladies as table gifts. Something sweet and something spicy that we both love for all our guests to enjoy. The wedding and reception was held at Alevi Farm Lodge in White River, nestled in a valley surrounded by Macadamia trees and Lavender fields. We spent the night prior to the wedding at their lodge which made getting ready the next day so much more relaxing because we did not have to travel anywhere or worry about being late. The majority of the morning was spent getting last minute things done and getting ready. 3PM arrived, the chapel was packed and my mother walked me to the front and gave me a last hug and kiss as an unmarried man. There I was standing in front of family and friends waiting to make the biggest promise of my life. Q the music and in came the bridesmaids one by one followed by the most stunning bride in the world, my wife-to-be in a couple of minutes. Even though I could not see her I couldn’t hold back the tears, the energy in the room was undescribable. Sue reached the front of the chapel and took my hand, I immediately felt a calming feeling and I knew this was the beginning of the rest of our lives together. Pastor Andrew from New Life church did a beautiful sermon, we read our vows to each other and then I got to kiss my wife! Although all eyes were on us it felt like we were the only two people in the world at that moment. We signed the wedding register and out we went to be showered by streamers, hugs and kisses from our family and friends. The fact that I could not see any part of our wedding day was a bit bitter sweet for me. Luckily we had an awesome photographer Henriette of Howling Moon Photography and Lucille of Lansha Productions, a very dear friend of ours that was the videographer, who were both there to capture the entire day on film for us. Something that means so much to me because hopefully one day I will be able to relive and actually see how the day played out. Here is a link to a short video that she made capturing our special day https://youtu.be/CXrvY1ZTW1Y. It came time for the bridal party to give their speeches and there wasn’t a dry eye in the room. There were very special words from every single person that we will cherish forever. The night was so much fun, guests were all standing in line at the Magic Moment photo booth to take a silly picture to stick into our guestbook and write us a little message, others were tearing up the dance floor thanks to our awesome DJ, Johan of JC Audio, who had us all dancing till the early hours of the morning. And as quick as it came it was gone, we were told by so many people that day goes by so fast but we didn’t believe them. My wife and I greeted the last guests, said good night and the next day we started saying our goodbyes to the friends and family that spent the night at the lodge with us.

We didn’t have much time left in South Africa so we made the most of it and spent some good quality time with our families for the last week. The 3rd of October arrived and off we went to the airport with 4 suitcases weighing in at just under 100 kg, 1 suitcase as hand luggage and a backpack, a blind guy and a very stressed out Sue worrying how the two of us were going to manage all of our baggage with only one pair of eyes. We arrived a couple of hours early at the airport in Johannesburg to meet up with some of our friends for a final bon voyage. We realised again whilst surrounded by friends and family that this is what life is about all the money in the world cannot buy moments like these. Cherish the time with the people you love. Forget about work, put down your phone, look into each others eyes and just be grateful for the people in your life. Two flights one stop over and almost 24hrs later we were back in Los Angeles. We managed to get all our luggage into an Uber XL and arrived at our apartment safely.

Straight back to “work”. I have been for 5 test sessions since being back. I can’t express how excited I am with regards to this trial. I have done multiple new kinds of tests from having to point out small white squares stuck to a black backgroud and then having to remove it, having to say in which directions a line is going on a screen to walking around with the device for the first time…finally being able to explore beyond those 4 white walls whilst being seated. The team is busy with the final tweaks before I get to take the device home with me and that day can’t come any sooner.

September might have been the best month of my life but October was a close second. My wife and I went on our honeymoon aboard the Carnival Inspiration cruise ship from Long Beach to Ensenada Mexico. It was definitely one of my best holidays ever it truly is a totally different experience, no need for driving or packing cooler boxes for the beach, setting up camp or any of that nonsense the only thing you need to worry about is whether you would like a slice of pineapple or an umbrella in your cocktail. When we got back from the cruise I was let in on a little secret, my dad had come to the USA to surprise me for my 30th birthday, a very special occasion because my dad and I share a birth date. Not only did we get to spend our birthdays together but we also got to spend our very first authentic US halloween together and that at one of the biggest halloween carnivals Los Angeles has to offer, they estimate that there are up to 500,000 people there every year and we just had to go and check it out. Now we will have to wait and see what November has in store for us, a very special set of shade 😎, our first Thanksgiving and hopefully our first white Christmas in December.

A good friend of mine that was paralysed in a motorcycle accident told me something while we were back home that I took to heart. “Even when you are going through the worst times of your life and you feel like you’re not going to make it you are still better off than the guy that didn’t wake up that morning”.If you feel like life’s pressuring you so much that you cannot breathe, you are still better off than the guy that breathed his last breath. Life is tough, you just have to be tougher!

The next phase of our journey starts now. Happily married, second stage of testing, new jobs, new challenges and a whole lot of new adventures that await us.

Thank you for reading and for sharing our journey.

Love,

Jason and Sue aka

Mr. and Mrs. Esterhuizen