Becoming DeafBlind is a beautiful thing

I want to share my story today because this special day is Usher's Syndrome Awareness Day. This is honor to people who's identified themselves as DeafBlind. Here's my story: 

I found out that I have Usher's Syndrome (US) when I was fourteen and started enter high school (hearing). My grandparents started to noticed the signs and we do have a uncle in the family that's diagnosed as Retinitis Pigmentosa and they were concerned about my vision and asked my mother to take me to doctor to take several tests. Oh boy, I never forget that day it was a lot of tests, blood works, and a lot of lights. You name it. I felt like I was in the office for hours but really it's sort of more than two hours. Of course, back then there was no interpreters provided compare to today, my mom was interpretering for me and I was suffered with a lot of miscommunication information and then afterwards, I spoke with doctor that I wanted to have real interpreter to clear up the communication. The doctor agreed. After that day, I was miserable, sad, shocked and of course i was teenager, so all of hormones were out of control. I had hard time to coping with accepting to the fact that I will become either partially or full blind in the future. There's no guarantee of when. So I decided that I took up braille classes and orientation/mobility to learn how to coping with it and be prepared myself for the future. The important key is eating health and stay away from being too stress. Being stressful can causing your vision decreasing quickly than you think. 

Before you ask, you ask yourself what's Usher's Syndrome and what does it mean? What does it look like? Let me show you. 

"USHER SYNDROME IS THE MOST COMMON GENETIC CAUSE OF COMBINED DEAFNESS AND BLINDNESS."

"Vision loss in Usher syndrome is caused by a progressive vision disorder known as retinitis pigmentosa (RP). RP causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision."  And you can find more information at the link:

https://www.usher-syndrome.org/what-is-usher-syndrome/usher-syndrome.html

In 2011, I went to Seabeck for first time and met so many people that's like me. I enjoyed the camp there, it's full world of DB (DeafBlind) people from all over the world and it was amazing experience for me. Then I promised myself that someday that I will live in Seattle because of the communities and weather is perfect for me and my vision compared to Midwest. I finally moved to Seattle in 2012 and currently living in Seattle for past six years and I love it very much. The community has impact on me a lot that Midwest don't have. For example, SSP (Support Service Provider), gain my independence and gain my identity. Also, not just that and I learned the new language and new culture via ProTactile (PT) and now it 's all over the world slowly and yet, it's very benefit me a lot. At first, I admitted that I hesisted about touch other people's hands because it's scared the hell out of me because I know that I will end up like them in the future. It took me three years to adjust and finally learned to accept my identity and I am proud to be DeafBlind and I now starting to use PT a lot even tho I can still see well. I just want to conintue that because of communication being clear, and visual information as well. I just completely fall in love with it. It's hard to describe but for you to experience, you have to be open mind and open your heart to actual experience the real hand on life by people around you. Yes, I have been grow up a lot and learn a whole of things. It's new world and new culture and it's ME. Yes, it's frustrating because there's no prediable on how changes it will occur or when it will happen. You just have to embrace your life and keep it going. That's what I am doing now. I am grabbing my time to travel the world as much as I can so I can embrace the memories that I have in my head as my imagination. 

Honestly, I wouldn't trade in for anything to restore my vision. Yes, there's medical research rumors but I still don't want to change it because that's who I am. I am finally identitied myself as DeafBlind woman. Yes, i do have bad days but it doesn't mean that I have to give up. If i give up, I wouldn't be here writing this story. I know that it will inspired others and show them that I have been strong my whole life and hell I am lucky enough to find out at younger age than later on. Most of time people found out way later in the age after eighteen. 

There are certain people that have been support me all the way, I am grateful to have them in my life as I am tear up and writing this at same time, without these people i wouldn't be here and I would end up staying in Midwest and being ignorant. So yeah, I rather to be experience and accept it than deny and avoid it. 

This is me, this is who I am. I identified myself as: 

*DeafBlind

*Queet

*Biracial

And thank you for read this story. I hope that you learn from it and embrace the people that you love and eventually you will never know that you will meet someone like me a s your partner. So please learn to accept for who they are and adjust to their lifestyles because WE will not change for you, WE will not do anything to adjust you, WE will do adjustment ourselves and learn how to handle it. WE just need you to support us, be there for us, and everything else. JUST BE YOU. If you don't want to learn it, then don't waste our time. 

Much love,

Samantha 

Self-Awareness

HEY! I know it's been a while since y'all read my last post. I am sure that y'all had great summer! 

Now as you know this month (September) is Suicide Awareness month. Many of you know thinks it's nothing but really, that's where you are wrong. 

More young people have been suiciding themselves every day for several reason...coping with something that they're not used to, sexual identity, rejection, and others. How do you notice or how do you aware if that person needs help. First of all, the term "suicide" is very serious and to me, it always can be happen instantly even tho a person said "OK". It's not OK, it's not OK to accept the fact that person is doing ok. Many of us always say that daily and you don't know our story behind. 

Suicide do guide to self harm with objects that you never thought that you will able to do. All of us are handling with it differently and different situations could pop up. Many people actually thinks it's crazy but no it's consider as mental illness and we all based on that because of social media, stereotypes, and others. 

Let me tell you something that I want you to aware of. I have been dealing with depression ever since I was fourteen. I found out that I have Usher's when I was 14 years old and freshman in high school. I kept that as secret because it's scary and I know that everyone will treat me differently. I started to denied that and it's turned me into depression and I had hard time coping with it. Later on during high school years, I tried to kill myself with razor around my ankle and I was going to let it bleed out. I decided to walk out of shower and dry myself up and let it bleed around my ankle, one of dorm staff noticed and asked me what happened. I lied to them and told them that I didn't feel anything until you mentioned it. Later in the night, I felt guilty and told the staff the whole truth, that person does her job and had to do something. Ended up called my mother and she ended up yelling at me and told me to stop it because she doesn't want to lose me that early. I am grateful for my mother to yell at me to wake me up and reazlied that I needed to stop being so sad all of time. I was struggling to coping with having Usher's until I entered college and seek therptist. It helped me a whole lot, got my focus back on track. 

Ever since I am still seeking therapist and it's nothing wrong. Suicide rate has been skyrocketed ever since because of social media, people around you being negative and you need to be surround people that loves you for you, giving you a whole lot of positive energy, vibes, and support you all the way. Seeing counselor or therapist is not bad thing, believe me. It helps me to get to the point where I am healing now. I no longer thinks of negative thoughts or thinking of kill myself. Not anymore. I finally am accepted my identity for who i am. 

Here's the tips on how to support someone who's going throughout difficult times: 

1. Be there for that person no matter what. 
2. Don't think that person is crazy because often it's not true. 
3. Check in and make sure that person is doing alright, ask if that person want you to be with her/him
4. Giving plenty of love. 
5. Give a hug to someone always help them to feel better and it's boost up their self confidence 
6. Ask that person to see if want to talk about it and solve the situation 
7. Ask that person what would he/she want you to do to help
8. Make them laugh, make them feel better 
9. Take them out for a walk, or take them to someplace that's positive and being around people
10. Encourage them to see counselor or seek therapist. 

Use these tips to talk with someone that you love. I always often check in with my close friends and family to make sure that they're all good and sometimes when you are in another state and I know how much tough it is at the moment but hey you do have friends around you in the state that you're currently living in to be there for you! 

Last thing, but not finished. There are don't do's. Please DON'T do this to someone who's in depressed status: 

1. You're fine. 
2. You will be OK.
3. You're nuts
4. You're stupid
5. Quit talking like a crazy person
6. You look fine! 
7. Why are you being so stupid? 
8. NEVER encourage them to do something that will lead to it. 
9. DON'T put a person in negative environmental
10. Don't leave a person alone with object that will kill him/herself. 

Remember, you're NOT ALONE. You have your family, friends, partners, and everyone that you know and love you being in your life counts. YOU COUNTS. YOU DO MATTER. After all, there's only one person in the world among millions of people, there's only ONE you, there's no other like you. 

Here's my favorite quote that will help you to get throughout rough day:

"The weak fall, but the strong will remain and never go under!"

Anne Frank

Much love,
Sammie