Video from DeafBlind Fight Fundraiser

Finally I remembered to get the video my friend did at my fundraiser. Enjoy and hope you learned something while you watched! Thank you Christine for video taping for me!

This video is when I did a mini family dinner to share my story since they were not able to make it to fundraiser.

DeafBlind Fight Success!

A year ago I decided to make my dream fundraiser a reality! So the planning began....

I started off with creating a letter to deliver, mail or email to local businesses asking for donations to the non-profits or donate items from their businesses for the silent auction baskets. I designed a shirt for the event and used a site that allows you to create a fundraiser to raise money from selling them. It was a hit! That money allowed me to purchase the venue I wanted, Vern Burton Gym. I knew the gym would allow enough room to space out tables so people walking around with the blind mask would not run into other people. The layout was drawn out and then it was time to plan food, supplies and center pieces! 

It is hard to believe that I did all the planning on my own and it all worked out! There was only one thing that didn't turn out, my center pieces, I had a vision in my head but due to technical difficulties with my laser machine my time ended up being limited to get them done. But, it all worked out and what I had designed people loved! When I was planning the table set up I wanted to make sure there was contrast to help make it easier for people to see. If you think about events you attend you will realize that it is usually a white table cloth, white plates, white silverware and clear cups. That is the worse for me! You would find me constantly searching for my the edge of my plate, silverware or napkins. To make it easier for the event I made sure that plates, napkins, cups and silverware were brown (I was being environment savy and did compostable items :) ) with white table cloths. Each place setting had a black mask with small holes for the guest to look out of to and get the feel of only having central vision like me.

My goal was to make the event simple, but a fun experience! I did a short powerpoint presentation to explain what Usher syndrome (USH) is and the different types. I shared information on the two non-profits, Ava's Voice and Usher Syndrome Coalition, and why I choose them. I then talked about myself and how I was born hard of hearing then diagnosed with USH. My home teacher that my family had when I was diagnosed with hearing loss at age 2 gave a speech about her job working with people that are deafblind, how things have changed since my childhood and how my disabilities are invisible. 

Then it was time to let the guests chose when they wanted to wear the mask. I asked if they could try for at least ten minutes. I had Little Devil's Lunch Box taco bar buffet, where most people dished up without a mask on. There were a handful of people that wore them getting food and walking to and from their table. I have to say that seeing everyone, even the children, trying the mask made me proud and my heart burst with excitement. While everyone was eating I made my rounds to each table to ask if they had questions or how the experience was going for them. People said it was hard to find their mouth, neck sore from scanning to see the area around them, understood why I get headaches and anxiety. The comment I heard the most was how amazed they were of me and how well I do with the limited sight I have. I had so many emotions going through me during the event from how family traveled from Idaho and Florida to support me, co-workers, my eye doctor and his wife, friends to people that knew me through my mom or others attending. The turnout was perfect!

I wanted the guests to have a chance to try using the cane while wearing the mask so we did a cane relay! There were two rows of six chairs and two teams. The first person would start by going down one side of the chairs then back the other side using the cane to feel their way around then pass the cane to the next person. It was a blast to watch! My childhood friend's kids were brave and stepped right up and joined! They did so well. It put the biggest smile on my face.

I had amazing silent auction baskets from businesses or people that donated. I am so thankful to the local businesses that donated items or money donations. I loved the section of the auction that had crafts or art that was done by people with USH or blindness. I wanted to show that even though we have limited vision or completely blind we can still create beautiful pieces! 

It has been two months since my event and I am still overwhelmed with emotions from the support. I loved seeing all those wearing my shirts I designed! Thank you all SO MUCH for your support and some of you have been rooting for me since I was a young girl. I couldn't do it without my family and friends. Thank you again so much for making my dream event come true!

Oh, I forgot to mention an important piece! My event raised over $5,000!! Wahoo!!!!

Audie's Support Crew!

Pictures with Family:

Pictures with Friends:

 

Table Rounds and Buffet:

 

Co-Workers:

It meant a lot to me to see how many of my co-workers came to support and get insight of what it is like for me. It helped them understand me a little better and I can't appreciate them enough! This crew, with some missing, is the best. Thank you for always being helpful and supportive at work!

My Creations for the Event:

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

Boise State Graduation

On December 15, 2018, I graduated from Boise State University with a Bachelors of Science in Social Science with a minor of Psychology. It is hard to believe that I finally made it to the end! It is a relief, but now the stress of looking for a job took over that relief. I had requested for a sighted guide for graduation so that I would be more relaxed to enjoy the event. My sighted guide had so much excitement for everyone and boasted with pride for us graduates. She volunteers every graduation, but her excitement never wavers. She made my laugh, smile and of course relaxed. I was most grateful for her help! She even sent my picture to my parents of me waiting in the gym and delivered me to my parents afterward.

I don't know if I will be staying in Boise or moving back to Port Angeles. I am applying for jobs in both places for jobs that I have experience in or something I believe that I could do. I want a job that is new and a challenge, but there is not many jobs available that I meet the requirements. I might eventually go back to get my Masters in Vocational Rehab Counselor. School was not easy so I am hesitant to go back for hard work and more essay writing. For now, I find a job.

New York, check!

I was surprised by an unexpected trip to New York for an early graduation and Christmas gift from my grandma and grandpa Winkelkotter. It was a quick trip during Thanksgiving week, but we did cram as much as we could into our days. The day we landed we walked around Town Square and I was instantly overwhelmed by the amount of people around me and the obstacles on the sidewalks. My anxiety did flare up, I won't lie...but I was in New York! I did a lot of sighted guide so I could look around and take in the sights. I can't believe how BRIGHT it is there with all the big screens and flashing lights everywhere you turn. There was so much eye stimulation going on around me that I had to remind myself to take deep breaths and try not to let it overwhelm me. We started off our trip with an amazing show to kickoff our Christmas spirit: The Christmas Spectacular starring the New York Rockettes.

As we entered Radio City for the show everyone was given a Santa hat to wear. There was also a section of the show that was on a screen to create a 3D image when we wore the glasses. It felt like the reindeer's and sleigh was coming right at our faces! I had a smile on my face and chuckled as I hear my grandma squeal next to me. It was pretty impressive. The orchestra was on a movable stage, huge TV screen for effects and the perfection of timing by the Rockettes. After the show we made sure we take our selfies and group shots in front of the big red ornaments in a fountain and a life-size light strand! (See end of entry for more pictures)

The next day we took the subway to Battery Park to catch the ferry to see Statue of Liberty and Ellis Island. We were greeted with the employees accommodating me and my group to move to the front of the line through security check and guided to the seating for elderly and people with disabilities. It was refreshing to have people acknowledge my cane and help out in anyway they could. I was told to head straight to front of the line when we came back. I was informed of any steps getting on and off the boat. I made sure I thanked them each time! Well...that lady is amazing and so tall! The sun was out, but it was windy. The two young ladies (Sabrina and Stacey I was with made sure they had a shot in front at each angle of the statue as Sabrina's mom was laying on the ground to get the right angle to capture it all! Oh did I mention that her mom was wearing a turkey hat? We had our laughs for sure!

We spent a good amount of time looking at the view and walking around Statue of Liberty, that we didn't spend too much time at Ellis Island. It is crazy to think of the process people went through and being separated from their love ones. Now we are dealing with the idea of the wall to keep people out. I understand people's reasoning's for wanting the wall or not. To me, I don't like politics and I don't like talking about it. But, I don't like how families are being separated, especially children. I do wonder if people would have the same answer if it was the other way around, Americans wanting to cross the boarder but not allowed to. Anyways...back on topic. We had our dinner at Hard Rock Cafe with a nice wrap up of the night at Broadway musical Aladdin. I love Broadway musicals and this is my third one (Wicked, The Lion King)! 

https://www.statueoflibertytickets.com

Day Two: We took an Uber to Empire State Building and visited the Observation Deck at floor level...86! And it was so WINDY and FREEZING! It is quite the process to get through the building and to the top. We were smart and get there after opening leaving no hassle to push through to see out the windows. Once on Observation Deck, the room is all open except the middle where the elevators run. You can walk around and get a 360 degree view inside or outside. Of course we bundled up and went outside. Not soon after we were outside we were ushered out of the corner we were in and security and blockades were set up. Being curious my grandma asked what was going on and she got the deets. Venus Williams was heading up for a photo shoot! Sabrina, Stacey and I stood outside waiting and freezing our bums off so we could see her. Minutes went by and she didn't come, so we gave up and went inside. We waited for a long time to have our change seeing a celebrity so close! :) We made sure that we waited by the window the was a straight shot where she would be.  Finally, the photographers and journalist come up and soon following was Venus. She was so tall! And beautiful! It was exciting.

http://www.esbnyc.com

We spent the rest of the afternoon taking our time learning and remembering those lives that were lost on 9/11. The memorial was beyond impressive and emotional sight. Once again, the security saw my cane and escorted us pass the long line waiting outside in the cold to the help desk inside the building. They offered large print maps and a reader that tells you about each section of the memorial. Sadly, the first room we walk into I had a bad panic attack and anxiety went way up. I tried using the reader, but I could not hear my surroundings. It was dark and so many people. I didn't know if I was going to be able to make it. I instantly lost my family. Once I found my grandma my attitude went to grumpy and I told her I couldn't use the reader. I let my grandpa use the reader since I knew this was important to him and the one place he wanted to go. Then I gripped onto my grandma's arm. Not every room was dark but majority of the place was. It defiantly tested me and it made me exhausted as well as how much we have walked in the last two days.

If you ever get to New York, take the time to visit the memorial. It is worth it. Before you enter the building you can visit the site where the Twin Towers stood. Now there is a waterfall that goes in the ground and all along the edge of the fountain are names of people that died. Inside the memorial you see parts of the foundation of one of Towers, firetrucks, building structures, memorials that were set up to honor, phone calls from passengers on the plane, and the story of the World Trade Center strike, Pentagon and Pittsburgh. Very powerful and moving place that reminds us not to take anything or anyone for granted and be thankful for what we have. Those lives lost will never be forgotten.

https://www.911memorial.org

Like I said it was a quick trip! Two full days of sight-seeing and WALKING! I am so grateful that I was given this chance and put another check mark off the bucket list! 

First Night Pictures:

Statue of Liberty:

Empire State Building:

9/11 Memorial:

Macys:

Thank you Grandma and Grandpa Winkelkotter! So thankful for you two and the support you have shown me over the years!