Living With Usher Syndrome. . .
What’s life like these days?
Very different. In the past few years I have had to adjust to the changes of my eyes but it really hasn’t been that horrible. Not fun, it SUCKS, YES, but not horrible. I do have days where I grieve and cry. It’s a natural part when you are losing something that you once had. But those days don’t last as long anymore.
If I was in my friend’s and family’s shoes, I know I would have questions about how I was doing. So I thought, why not gather some questions from others and then create a blog post about it? I thought it was a good idea too 🙂
So…here are a list of questions and my answers:
What is your vision now?
That’s a good question. I do not know the exact percentage (it could be between 10-13%). When I was first diagnosed in 2012, I was still able to drive around but not at night. I had to stop driving at night many years ago. The eye doctors whom I shared my issue with just kept telling me it was normal for people to develop night blindness. No one really took the time to figure it out and so I just shrugged my shoulders and said “OH. OKEY”. It wasn’t until we moved back to my home town and set up an eye appointment so I could upgrade my glasses that I said, “I’m NOT leaving here until I get answers why I have night blindness”. The people at Foreman Eye Care did an amazing job in helping get to the bottom of it and this is when we discovered about Retinitis Pigmentosa. Then I was sent to an R.P. Specialist in San Francisco and this is when I was told I had Usher Syndrome.
Anyhow, it’s been 4 years and my eyes have changed quite a bit since then (thankfully my deafness has remained the same!). I definitely have tunnel vision. I do not have ANY peripheral vision. My central vision is pretty much fine as long as I’m wearing glasses/contacts. You know, just the normal every day eye issues that everyone has. The best I can do is kinda show you how I see (photo below). My vision changes depending how awake or tired my eyes are or what the lighting is like in the area/room. If it’s dark, I literally cannot see anything. I go by memorization or use my phone’s flash light. Most of the time I will take someone’s arm. I have not used my white cane in public yet. Yes, you read that right. I actually own TWO white canes. One was given to me by a fellow Usher person who works at the Society of the Blind. I took a 2 hour personal training course with him as he taught me how to properly use my cane and walk around, blindfolded! It was amazing how much I had to rely on my ears and nose. Who knew I would be relying on my ears more than my eyes?! To be completely honest, I just haven’t been ready emotionally to use the cane in public yet. I also haven’t had the desperate need as I have been able to get around on my own….slowly.
A lot of examples that I see when I Google “RP vision” shows a black hole around the person/item. That’s not what I see and I am pretty sure I can speak on behalf of most (please correct me if I am wrong). This picture for an example: I can tell there’s something around her but I cannot tell you what it is. It’s fuzzy/blurry/hazy. If I back up, then I’ll be able to see fully what this adorable little girl is wearing. There’s a saying that Usher’s can relate to and it goes something like, “We can spot a pencil from across the room but we cant see the elephant that’s right in front of our face”.
SO SO TRUE!!
How is it raising two young children and one on the way? What tricks do you use to successfully navigate your day?
Honestly, I thought it would be A LOT harder. My brain does a good job adjusting to the changes of my eyes and so I have learned to adapt and the kids too. A few things that we do to make sure I am able to get around without harming myself is:
- I don’t take the kids to the park alone. I am NOT able to watch them as closely as I would like to and therefore we bring the park at home. Last year I was gifted a play structure by this amazing foundation, The Megan Foundation. Now I do not feel like a “failure” to my kids when we now have an awesome play structure in our own back yard. (That’s a story I’ll share for another post)
- We try to keep the floors in the house clear of toys and items that I might trip on. The kids actually do a very good job at this. My dog? Not so much. We are working on that. ha!
- We have chain locks on the doors so when I am home alone I KNOW the kids are still inside the home even when I’m not able to hear or see them. This is a great safety thing and keeps me not worrying of the “what if’s”.
- I use the back of my hands a lot to run along the walls so I don’t have to use my eyes so much. This limits me running into corners! Thankfully our home is open and that doesn’t happen too often. I make sure I take my time walking and not running.
- SLOWLY. The kitchen, I do things a lot slower, like cutting with knives or moving things around.
- I ask for my husband’s help. He is amazing in supporting me. If my eyes are too tired too cook, he’ll jump right in and take over, even when he’s worked a 10 hour day!
I was wondering, has your syndrome played a part in your decision of when and how many children to have?
YES and NO.
I am a very, very, VERY stubborn and strong willed person (when you see that in my kids, blame it on ME). I tell you that because I have always wanted to have an odd number of kids. The number 3 seemed to be THE number that just stuck with me. My husband really didn’t care how many (well okay 4-5 kids would be pushing the limits) but we agreed that if it was God’s will then that’s what we will plan for. When I was first diagnosed, I felt that perhaps I wouldn’t be able to be a good enough mom to be able to raise my then only son at the time. My eyes never really got worse so then we got pregnant and were blessed with our second child. We discovered at 2 1/2 weeks our daughter was born with a life threating disease called Cystic Fibrosis. I was DEVESTATED. Not only was our daughter’s life going to be shorten but how was I going to take care of her if I wasn’t going to be able to see!? After given birth my eyes did get worse. I am not sure if it was connected with pregnancy or stress or if it was just the timing of when my eyes took the next step downhill. But, like I said previously, my eyes and brain adapted to the changes and I was “fine” again.
Then the time came and I thought about having a third child. I felt guilty for wanting another when I already had two. I was so afraid that my family and friends would think I was selfish, irresponsible, crazy, stupid. But the desire was there and it was STRONG. I prayed to God and asked Him to take the desire AWAY from me if it was a bad idea. Funny enough, the desire became stronger. I cried a lot. I then stumbled upon a blogger who was blind. She was a MOM. She was blind BEFORE she had children! I thought, WHAT?!
After some thinking, I thought to myself, what makes me think Blind people or Deaf people can’t raise children? It will indeed be harder! Not impossible. It just shows you that the world thinks that we all need to be in a perfect place in life before starting a family (financially, having the perfect body, having a house to own, etc). It’s not true. While those may make life with children a whole lot easier…all you need is LOVE. As cliché as that sounds…it’s true! I then asked around in one of the Deaf/Blind Facebook groups to see how many people actually had children while being Deaf AND Blind. WOW. There were so many encouraging notes from people and testimonies of how they raised their many children and they turned out fine! It gave me the courage that if they could do it then I/We could too. 🙂
So, I refuse to let Usher Syndrome take my dreams away from me!
I am curious as to how you and your hubby are planning for the future and what your ultimate goals are.
Well, one thing that we wanted in the future we did already. Buy a bigger one story house (but small enough that I could still hear the kids while they are in their rooms). This actually helped A LOT with cutting down me running into stuff so much. We have more of an open space here and wood floors which helps carry sound so I can hear the children. CHECK √
The ultimate goal is that we would like my husband to work from home. Whether that be from a job he’ll be doing or from my essential oil business…probably BOTH. We truly do not know how much time I have left with my eye sight and so having him home would help so much. We have thought of hiring someone to come help once in a while (take me and kids to future baseball games, dance, school functions, etc.) but funds are tight and we just aren’t in that place in life to afford that. But someday!
My ultimate goals are to be finically stable to help our family, friends, and strangers. I want to be able to help fund research for Cystic Fibrosis and Usher Syndrome. To be able to take my kids anywhere they want to go and for myself to still be able to see them enjoy it.
I was wondering how you felt when you went to the Young Living Essential Oils conference. How did it affect traveling and navigating in an unfamiliar area? Was it harder than you expected? Easier? What helped you (or didn’t help).
I had so much anxiety and fear before my trip! I didn’t know what to expect. This was the first time I had traveled alone, by myself, with no one I knew. I traveled to Utah and took Southwest and even had to do a change plane to get there. I was scared I would miss the connecting flight due to not being able to hear over the intercom or see the flight numbers change. Thankfully I am not afraid to ask questions to complete strangers and so I got a lot of help for doing that.
I brought my folding white cane with me (see photo below). It’s so cool I can carry it everywhere in my bag! I told myself that if I got frustrated and people kept walking in front of me then I would whip it out and use it. That’s really my main use for it, to keep people away from me while I walk since apparently people love to walk RIGHT in front of you. Since I cannot see on the sides, I run into them. Then it gets really awkward. We don’t like awkwardness am I right? I really probably should have used it because I know I would have been able to walk faster in the terminal but I didn’t get frustrated and I did pretty well without it! Next time perhaps?
As God would see fit, He gave me the perfect roommate during the Young Living Convention. I met her and a bunch of other team members online a couple of years ago but this was the first time I met them in person. My roommate got around by wheelchair. So we helped each other get around that whole week! I didn’t need my cane because I pushed her around and she was my eyes, especially at night. Oh boy, night time was hard but she did amazing and we worked as a team. It was pretty comical at times and we laughed at ourselves a lot. (YOU WERE THE BEST! GIRLFRIEND!)
It was much easier than I had expected and I can’t wait to try again…this time…I think I’ll be more comfortable using my cane. 🙂
How has Usher’s affected your view of God?
This one is a hard one.
Not that my view is negative towards God but the fact that it is hard to put into words how much God means to me even more than He ever did before I was diagnosed. People will fail you. I guarantee it. People will break your trusts. People will shy away from you because they are uncomfortable with you going through your struggles. God? He’s always there as long as you reach out to Him. I do not believe the saying “God never gives you more than you can handle”. I believe life does that and God comes and gives you Strength. Wisdom. Peace. Comfort. I have learned that no matter what life brings you, you can always be a light to others and help inspire others to live life to the fullest. I rely on Jesus for that and His help. It’s the only way I survive this crazy world we live in and it is the only way I get back on my two feet. He’s pretty amazing if I do say so myself. 🙂 One of my favorite verses that I love and have held onto for years is this:
“For I know the plans that I have for you, declares the Lord, plans for peace and not disaster, to give you a future and a hope” Jeremiah 29:11
I would like to learn more about Usher Syndrome and how I can help bring awareness.
I love that I have friends and family to truly want to learn and help! In a nutshell…
“Usher Syndrome is a rare genetic disorder causing individuals to go deaf and blind, and in some cases to lose vestibular control. The severity of the vision, hearing, or balance loss depends on the type of Usher Syndrome one has. With an estimated 50,000 people with Usher Syndrome in the US alone, it is considered the leading cause of combined deaf/blind disorders worldwide. It is passed to offspring by both parents, who each contain a copy of the mutated gene. Those who inherit only one copy of the mutated gene. Those who inherit only one copy of the mutated gene are considered to be carriers and do not express symptoms of the disorder. However, carriers can pass the mutated gene onto their children as well.”
You can read up more about —> “What is Usher Syndrome?” <—here on my blog.
TODAY, September 17th, 2016, marks the 2nd annual official Usher Syndrome Awareness Day…All Over The World. We have people spreading awareness in the UK, Ireland, United States, and many other places that have people who live with Usher’s.
It’s neat to see all of us connect with the technology that we have through Facebook, E-mails, and Blogs. I am truly thankful!
When I was first diagnosed in 2012, there was NOTHING on the internet that I could find. I could not find any support groups on Facebook, there weren’t many blogs out that was actively running, I wasn’t aware of any Usher Syndrome Foundations at all. Then in 2013 I stumbled upon The Megan Foundation and read that there was another gal who had Usher Syndrome type II just like me. Our childhood was very similar in how we both were born partially deaf, no one found out till we were around 3-3 1/2 years old. We are now both married and she has a seeing eye dog named Sunshine and I’ve got my seeing eye children. HAHA! Anyways, we have come a LONG way and I am so happy to be able to be part of spreading awareness and hoping to help find a cure for this disease that is robbing the vision of so many of us (and some even their entire hearing). I pray that we can find some type of cure in my lifetime for all of us. Since Usher Syndrome is considered an orphan disease (just like Cystic Fibrosis) the funding comes from people like YOU. And spreading awareness and having fundraisers. Can you help??
Vision For a Cure is a non-profit organization that I trust that the funds all go back into research to help finding a cure and fundraising for Usher Syndrome.
And if you want to know, they DO NOT use human embryos during their research (This was very important for me to know this).
The professor who is in charge of the research has an adult daughter AND son with Ushers so it makes him even more involved in helping find a cure. You can read more about the research on their website http://www.visionforacure.com/exciting-research.html
We are trying to get 1000 Facebook likes for their page by Sunday, please help spread the word and awareness! Go on, you know you like it!—>Vision For A Cure Facebook<—
Thank you so much for taking the time to read my current journey with Usher Syndrome and I hope I have inspired you that even though life can suck, it can be challenging, it’s not the end of the world. We have so much more to live for!