Dream Event

Years ago I saw a post on Facebook of a restaurant that opened up for customers to dine in the dark for a unique sensorial experience. Also, a video of a person that has Usher syndrome who had their family wear shades to experience eating with vision loss. Since then I have dreamed of doing a fundraiser in my town to spread awareness and to create a fun and safe environment to experience what it is like being in my shoes.

My goal is to create a scenerio that best represents an environment that will show others why I experience anxiety due to my dual sensory loss (hearing and vision) and to help them better understand what it is like. How I plan to do this? My dream is to rent the Masonic Temple hall to have a buffet lunch and the money from the ticket sales will go towards Usher syndrome cure/research and Ava's Voice youth camp. Each person will be given a mask to wear that have tiny holes that will represent my vision loss and headphones or cotton balls to protray hearing loss. I would describe what I experience when I attend a restaurant or buffet and what I do to get around, set up my eating area, when I ask for help, how anxiety rises and answer questions from the guest. While everyone is eating I would like to stop and visit each table to explain how to approach a person with vision/hearing loss and what they are feeling from this experience.

I want to have have a table set up of items from local businesses to either raffle or silent auction. Another table that has items that I have made with my paper crafts or wood burning. A fun area to pose for pictures with props and maybe add some fun after we eat-dance the afternoon away!

My plan is to ask local businesses in Port Angeles if they would like to help sponsor the event or donate for the raffle/silent auction. The only way I will be able to make this dream a possibility is with sponsors. I have set up a t-shirt fundraiser and the money will help with event. I designed the shirts and I will ask those that purchase them to wear to the event if they join!

I hope that I can make this dream become a reality! As my Usher tribe would say "dream it. believe it. crUSH it".

T-shirt Fundraiser 

https://www.customink.com/fundraising/usher-syndrome-fundraiser-event?utm_campaign=desktop-campaign-page-share-v3&utm_content=usher-syndrome-fundraiser-event&utm_medium=social&utm_source=copy-link

Recipients of Money from Event

https://avasvoice.org/

https://www.usher-syndrome.org/

Dating

Dating...ugh...why does it have to be so hard. I listen to stories of how parents or grandparents met and wish it was that "easy". I am an introvert and that doesn't help that being social gives me anxiety. I have tried online dating and that was a nightmare. 

I decided that I was going to be honest with anyone that showed interest that I have vision and hearing impairment and can't drive. I don't want to invest in my time getting to know someone when they will just bail when they find out. I know that this doesn't allow them to get to know me, but can you really get to know someone online? Most of them say they don't have an issue with it, but slowly disappear over a weeks time. Those that stick around, which is a rare number, end up wanting one thing only-sex. 

My worst fear is being alone and having to go through my vision loss without a partner to hold me when I need it, tell me that it is going to be okay and that they love me. I know that it is a lot to ask for a person to take on when we don't know what my future holds or how to prepare for what life can be like for me if I go completely blind. I am worried about it myself and very scared to face it. The idea of having a partner makes me feel a little less scared and safe, but I really don't want to be a burden. People tell me that it shouldn't matter if they love me, but I don't want them to end up resenting me. The idea of the person I love resenting me because he can't handle having to help me more or take on more chores breaks my heart. I have seen it happen to someone and I have heard many stories of it happening. I have been used and taken advantage of too many times that I don't want to go through that pain. It is hard enough to be rejected by someone that you have fallen for  that doesn't feel the same for you. I have a big heart that just wants to love someone, but I can't make those I like fall for me.

I debate with myself a lot on the idea of giving up dating and accepting the idea that I will be okay on my own with my family to help me out.  With all the hurt and rejection I have dealt with in the past the choice comes easiest; throw in the towel. No more online dating, no more trying. I am going to start focusing on myself and face my fears on my own (with my family).

The Struggle Since Moving Back to PA

Since my last post I have move back to Port Angeles and started working at the hospital (my old job in registration now patient care coordinator). It has been a great feeling to get that stability feeling you get with a paycheck and knowing you can pay a bill without worrying about living from check to check.

It does take a toll on me working full time with my disabilities. The long hours of computer work even with my magnifier leaves my eyes fatigue and tension headaches almost daily. By the middle of the week I am physically and mentally drained. My weekends are spent recovering so I can go again on Monday. With Covid things are more of a struggle with the mask and plastic shield that I strain to hear patients. I even decided that maybe new hearing aids would help, but it has only helped a little bit. It is hard for me to say to a patient that I'm sorry I can't understand them and to ask them to write their name down. I have been lucky that most patients have been nice about it, but there are a few that get annoyed with me asking to repeat more than twice. I guess this is practice for me to speak up when I need that help (I am not good asking for help). This was written long time ago when I first moved back, now the current situation.

The last year I have been struggling with severe headaches/migraines leaving me to only sleep for relief- results in missing a lot of work. It has been trail and error with medications, injection, MRI, neurologist, and more to try to find a solution. Nothing has worked so far and missing work has been hard on me. I miss the interaction with my coworkers, a paycheck, and being out of bed and house. The pain is draining physically and emotionally. I am thankful for my family to help me out and keep me afloat.  It has been very frustrating, but I am trying my best to keep positive and think each night that tomorrow will be the day I get back to work. There are days where I don't feel I will get to that day I get back to work and less or no pain. I try to cry, but the tears won't fall. I want to scream, but instead I let the emotions build up inside me. I want to break something to release the frustration and anger, but I know I will just struggle to find the broke pieces. And of course, this is not helping my depression. Will I ever catch a break...

I have found as I moved back that my friends don't fully understand my situation and how I don't always "feel good" and being social is hard for me. I know deep down that I need to get out more and enjoy life while I can, but the fatigue, headaches, eye pain and anxiety all adds up and the energy I have left is used to get out of bed. I am ready for the day that mornings are not a struggle: to get up and face the day, the pain, the anxiety, the battle against my emotions, and putting on the brave face for everyone to see. 

Every day is a battle and one day I will win, but for now I push through.

Bucket List

 I need to get back to blogging to help me through my coping process. It helps to write. Right now, I wish I could go on a trip to check a box on my bucket list. Here is what I have so far, but I know there is something I am missing that I would love to experience.

1. Skydiving
2. Zip Line
3. San Francisco/Golden Gate Bridge
4. Disney World/University Studios
5. Cabelas Store
7. Riding/Camping at Sand Dunes
8. Ocean Shores
9. Shooting
10. Leavenworth
11. Date Night at Drive in Movie
12. Volunteer in Another Country
13. Take a Dirt Road up the Mountain to see the Sunset and See the View of PA/Sequim
14. Take Train to Whitefish, Montana/Ski
15. Broadway Show
16. Seahawks Game
17. Horseback Riding through a trail
18. Drive a Truck
19. Alaska/Northern Lights
20. Nashville
21. Visit My Host Family in NC
22. Try Archery
23. Miniature Golf
24. Go Kart Riding
25. Paint Balling
26. Nerf Gun War
27. Rodeo
28. Horse Races
29. Float The River 
30. Mardi Gras in Louisiana
31. New York
32. Areas Around the World

Asia:

• Japan
• China

North America:

• Mexico
• Canada

Australia

New Zealand

Fiji

Africa

United Kingdom:

• Ireland
• Scotland
• England
• Guernsey Island
• Orkney Island
• Inverness, Scottish Highlands

Europe:

• France
• Belguim
• Greece
• Venice
• Spain
• Italy

South America:

• Brazil
• Peru

Easter Island

33. National Parks/Monuments


Parks:

• Yellowstone National Park
• Grand Canyon, Arizona
• Grand Teton, Wyoming
• Mammoth Caves, Kentucky (Went when I was there for World Series)
• Yosemite, California
• Zion, Utah
• Acadia, Maine
• Mt. Rainer
• Island in the Sky in Canyonlands, Utah
• Rocky Mountains, Colorado

Monuments:

• Craters of the Moon, Boise
• Natural Bridges, Utah
• Statue of Liberty
• Mount Rushmore, South Dakota
• Memorials in District Columbia
• 9/11 Memorial