Struggles/Changes (Warning may be hard to read)

Lately, I have been thinking a lot about how things use to be before I was diagnosed with Usher syndrome.

When I think back on my memories and look through pictures prior to turning 16 years old. I can't help but noticed how I have changed so much and I wish I could have that person back. Everyone is afraid of changes, even if they won't admit. We like to know what to expect from ourselves and others in the comfort of our zone. It is crazy how one diagnoses or event can turn your life upside down and change how you are forever.

I use to be confident, strong, energetic, not afraid, knew what I wanted and full of life. I was far from perfect, my life was getting started. I had gained my independence from driving and senior year was nearing- thank goodness. By my junior year, I had hit rock bottom; I was battling daily with my depression, bullying from classmates, yet I was finally accepting that I have a hearing loss. I was finally accepting that I will sometime slur my words or struggle to say certain words even though I know what they are and get red faced/embarrassed by it (still a struggle). Suicide was in my line of sight. I felt like the world was pushing down all around me. I felt like I was the sand in the waves that just keep swirling around and never able to touch ground for very long. I always hear people say they don't understand how someone can commit suicide and that it is a "cowards way". Those are words of people that don't understand what it is to battle depression nor have hit rock bottom. I am going to try to explain how it was for me...

Bullying was always a situation that I could never handle. My hearing aids, FM system or speech was always a target for someone to use against me. I would just freeze inside, turn red in the face and never knew what to say to defend myself. I had a couple teachers even say a piece or sometimes my friends would say things that would push me to the edge. I bottled everything up inside me and cried a lot. Regardless, I tried to be active in sports and I would talk or act a certain way so I could fit in and be a normal kid. I shake my head now, realizing that there was nothing wrong with me. There is no normal, everyone has their baggage. I was fine being me.

Junior year was the hardest. I had finally broke from the years of bullying, struggling with where I fit in with friends, fastpitch was no longer a game I loved because of how I was treated by a few players and coaches, I felt alone and not loved. My world became darker and I just wanted to stay in bed. I had gone to the principle about a situation with a bully and I was told there was nothing that could be done about it. It didn't matter that I was pushed into the lockers or being sneered at by a group of girls that ran in the same group as me. I left the jock group because I was done dealing with them. Of course, no one "saw" anything. It was my word against them. I finally broke down and I mentioned in passing that I might not be around tomorrow to a friend. That scared her and she told a teacher. My parents were called and I had to meet with the school counselor and talk about why I said those words. At first it was embarrassing but it was the first step of getting help. I didn't think they would understand or believe me. Since bullying was brought up they spoke with a few of the people that I had mentioned that had most recently bullied me. Unfortunately, they were going to arrest my friend and they did nothing with the one I had the most issues with. Most likely it was because she was popular and varsity sports player. My parents told them not to arrest my friend. My friend didn't realized the words were hurting me and it made our friendship closer. He is still my best friend, who always checks to make sure I am okay and that I don't fall back into that dark place. Therapy and medication was prescribed. Therapy didn't help me much and anti-depressants did, but I gained about 30 pounds being on them.

When I was to the point of suicide, the world around me disappears, numb to feelings of happiness, feel that no one loves me or cares, start to think that it is better off for everyone else if I am gone, I just want to curl up in the corner and never come out, I feel like the world is pressing my shoulders down and its hard to keep my head up and smile. I feel all this and yes, in reality, family and friends do care and love me, but when you are in that darkness you are blind to it all.

After I started meds and some of my friends were aware of it things got better. I was not afraid to tell people that I had reached that point and that it is not a weakness to ask for help. I learned from therapy what the signs are to watch for so I don't reach that point again.

My senior year, I thought I was going to crash and burn again after I was diagnosed with Usher syndrome. I no longer could drive, play fastpitch or pursue a career that I wanted to. Yes, it turned my life upside down, but what changed the most was my personality. I didn't hit another suicide point until 6 or so years later. That time it really hit me hard that I have never cried so hard and I was desperate of help. My parents were gone, my best friend's phone was dead and my sister was in Portland. I had snapped out of it as I was trying to cut my wrist (no cut was made). My whole body was shuttering from my crying and I couldn't talk. My friend's phone had died when we were on the phone and she knew something was not right. She took her child out of the crib and showed up at my house. My sister told me to go to the hospital so they could help me calm down and watch me. I wasn't admitted for the 72 psych hold that usually happens in suicide attempts. I think it was because my friend was there and I was not going home to be alone. They knew that my sister was coming to stay with me. This attempt scared the shit out of me. I told myself, never again. I cannot let myself fall into this deep hole anymore. Yes, life is tough sometimes but I need to buck up. You can't be afraid to tell someone that you need help, to admit that you can't be alone, and to know that it is okay to cry now and then. I tried therapy again, but I was not getting the feedback I needed. Medication dosage increased and I was reminded of the signs I need to watch for again.

In ways, the suicide attempts have made me stronger. I am no longer afraid to tell my family that I need to come home or stay over because I can't be alone. I am not afraid to call someone to talk to just so I am reminded that I have people that love me and given words of encouragement. I don't let myself fall into that hole. If I start to feel that I am hovering the edge I do something about it. Sometimes just getting out of the house for a little bit helps. I have not thought about suicide since that last incident. Yay!

Lately, I started to realize how much my personality has changed since high school. It is all because of my eye condition, retinitis pigmentosa (RP). I worry more, afraid of the unknown, experience anxiety, get frustrated more easily, less patience, feel vulnerable and I don't feel strong. I tried to not let it hold me back from going on adventures or trips. It does make it hard to go out on my own downtown because trying to figure out how I am getting to and from is stressful. It has made meeting people and making friends very hard. I tend to stay home in my comfort zone. I wish I was still energetic and fearless. I wish I could say that RP doesn't control me, but some days it does. I have read that other's with RP feel living in the city is easier, but I feel that small towns are. I would move back to my hometown if I could. There are no resources available for my disabilities or job opportunities. I am limited in small towns, but I feel lost in the city. I need to find middle ground! :) I think I need to see my change in personality not as a negative things. I have to adjust to life with vision loss. I am always adapting to my vision change. My biggest fault is thinking negative about myself. After so many years of doing, it is hard to retrain your mind to think positive. All I have to say is that not falling into that dark, black pit of depression every time my vision changes is a strength. Don't get me wrong I usually am down for a few days, but nothing like I use to. Life will always be a challenged for me, but I have to keep reminding myself that I am not alone in it all.

I remind myself of things I am grateful for. I enjoy getting pictures and videos of my niece and nephew. Thankful that I can see them grow up. I'm thankful that I can still see enough to play with them and see their facial expressions. I find myself just starring at things- taking in the whole picture. I want to be able to picture the ocean in my mind when I can't see anymore.

I don't write this to make people worry but to understand what I have been through. I have grown from these experiences. I don't know what lays ahead with my vision and it scares me, but I can't let it control me. I need to have control of my life. That is my goal now. I may need your help encouraging me, :).

Volunteer in China Article 2006

Health Update

Almost a year after having cataract surgery I noticed that my vision was not the same and I was seeing worse than before surgery. It turns out that have to have a laser procedure done due to the secondary cataract, which is common. I had my right eye done in the last week. It made a difference! I am seeing better and now I keep my fingers crossed that it my vision doesn't worsen. I finally asked how much of my vision field I had left in each eye. I have 5% left in each eye, which is close to looking through a straw. It was a shock and put things into perspective.

After many years of dealing with lower back pain and losing my strength in my left leg, surgery was finally needed. I had discectomy of L4 and L5 in February. The pain has always interfered with my daily life, but it got worse again. I was stuck in bed and I was not able to get around. My left leg was weak and numb. I had to take the semester off from school. I might have to have my spine fused down the road since I have a fracture on a vertebrae.

"Walk in my Shoes"

Over the last two years I had been working along the side of a group of people that have Usher syndrome from all over the US and Mexico. We all wanted to create a book full of our stories with living with Usher syndrome. We wanted the book to be used as a resource and inspiration for others. In December 2016 our dream came true and the book was published!! It has been crazy seeing my name and picture in a published book. Chapter 22 is all mine! :) I have been working on promoting our book in Washington, Oregon and Idaho.

Day 16 London

Today was the last day of sightseeing and I was ready to be home. We were headed to the Tower of London and the Crown Jewels. When we reached the tower I knew this was going to be a rough day for me. I woke up not feeling rested and my eyes were hurting, which meant my sight was not clear. There were people EVERYWHERE, people were pushing each other to get through and loud music playing. My anxiety increased real quick. For the trip, I had been wearing only one hearing aid so I could listen to the receiver, but this day I knew I needed both hearing aids. I had to take lots of deep breaths to get through the day.

The tower was not what I expected, smaller than I thought. The Crown Jewels can not be describe because no words can be said to give you a picture in your mind of how breathtaking they were. We saw a video of Queen Elizabeth coronation, the cape she wore, and the gold dinning set and punch bowl. I couldn't believe all the gold! Everything looked so formal and elegant.

After that tour we drove by Kings Cross, which was a very boring building that was not exciting at all! We also drove by Buckingham Palace, but too quick for me to see a lot and take pictures.

Day 15 Stratford-Upon-Avon

We went to Warwick Castle which is very popular in England. This is a place that you get to see medieval demonstrations, explore towers and dungeons and walk the grounds of the very large castle. I don't know how to explain how this place looked. People everywhere that are dressed up in the era clothing, archery lessons, seeing bald eagles flying, sword fighting, story telling, and trebuchet show. There was never a dull moment. We started the day in a very warm day in the sunshine that quickly turned into a complete downpour! Everyone was running to cover and trying to stay as dry as they could under their raincoats and umbrellas. I stood under a tree with my umbrella in one hand and eating my hamburger in the other, watching everyone bustling around. I was glad that we were able to watch the Mighty Trebucet show in the sunshine! I explored the grounds and people watched. They had a section for birds and there were so many of them. I felt bad as they were either in a glassed cage or cuffed to a stand. I wanted to set them all free but they were beautiful. Inside the castle they had everything decorated and set up like it was being used- fake food, wax people and players going of conversations that would have taken place. It was neat and done up really well.

https://www.warwick-castle.com

Oxford

That afternoon we had a tour of Oxford College and the area around it. As we toured we learned about the history of when the school was first built and soon learned that I will see a spot where Harry Potter was filmed for a scene. Yes, I was excited! We got to see the hall where the teachers ate along with some students. It was set up just like Harry Potter!

Below pictures are where the scene when MadEye Moody turned Malfoy into a ferret in Goblet of Fire.

Day 14 Monmouthshire, Wales & Worcestershire, England

We said our goodbyes to the ship and the good food. It is not a lie when people say you gain weight when you go on a cruise. All that delicious food that you can try and more than one dessert without feeling guilty if you can't finish because you are so full. Yep, I think I would have gained a lot if I hadn't walked so much every day!

Wales

After we left the ship we headed to Wales to visit Tintern Abbey which was a sight to see! It was only the bare bones, the shell of the abbey that was left. King Henry VIII had removed doors, stain glass, roofing materials and anything valuable inside for money. This was known as "Dissolution of the Monasteries" during the English Reformation. The abbey was in a beautiful and in a peaceful green meadow that was surrounded by trees. There was no floor left of the abbey- it was full of grass and white flowers. Even though it was picked apart by the King it was still amazing to see. As I sat on a stone wall listening to our guide tell us about the abbey, I could tell that there was history upon these grounds. I could have sat there forever just gazing upon the view of my surroundings: blue sky with few fluffy clouds, trees, sunshine on my face, smell of the grass and dust and the abbey.

http://www.castlewales.com/tintern.html

 

 

 

 

England

Next we took a scenery drive into the county to visit the fist LDS chapel that was ever build. It was this small, cozy, stone building in the middle of no where on a dirty road. We had a small service and sang a couple hymns. At this point, I was getting my first migraine of the trip, which I felt very fortunate about since I can get them frequently. After the service people took the time to take pictures as I rested on the bus. I didn't get any pictures of the chapel since it was so small and too many people were trying. See the website to see the cute place!

http://www.lds.org.uk/gadfield-elm-chapel

After we left the chapel we made our way to Stratford-Upon-Avon for the night, which is also Shakespeare's hometown. Before we reached the hotel we stopped to see his grave. I stayed on the bus since my migraine was not gone yet. That night we walked around the town and had some yummy pizza.