Like normal, I started feeling down, I am going blind and why I am still trying to finish my PhD. It started asking what I can do before going blind which leads me to Quora, good answers, I wont go to a psychology but maybe a counselor. Read more from the Quora, some one posted on SecondSight. I read this ending blindness in National Geographic. I decided to go to my Twitter account, where I joined all those RP related twitter accounts. Guess what? They might have identified the cause of retinal disease. We still do not know why the NDA is not producing enough to fit the cell. This is very subjective, niacin is converted by the body from vitamin B3, so I am experimenting with myself, I am going to take food rich in vitamin B3 or the supplement…
Join me on a roller coaster ride to disbelieving… hmm…this sounds like my PhD. I am now transitioning from an independent life, doing my PhD full time as a foreigner in Melbourne to back in the hometown where I came from, where public transport is non-existence and being the “smart ass” I choose to be avoid the unwanted from happening, I stop driving! I now reply on my closes family to drive me! Hell! I am a really lucky girl! Haha, this is my “new” life!
Doc said you are lucky if you still have your vision at 40, this year I hit 37! Time is running out! I am trying my best to live the moment! Everything I do is
purely based on the basis, I enjoy doing it!
I used to rent a room with a housemate in Melbourne, woke up, made my own breakfast and take the tram to uni, the sometimes I run home. Now, I hardly move!!!! I wake up to do yoga, my dearest mummy makes me breakfast! I go to work on my PhD. PhD??!!! Haha, my committee thinks I am below the standard, but I just continue doing what I enjoy and I have a feeling I piss off a lot of people. Hey! Is part of my disbelieving process. After a day in uni, I go home and enjoy my walk or run on the treadmill and play with my three cats! I still have some believe system, keeping myself active! I believe that standing healthy, maybe I wont lose my sight that fast!
I had been repeating this same story over and over again and I want to let this go but I know is a valuable learning lesson for myself. My bro told me to write a book and all profits go to support RP patients, I seriously do not think anyone will be interested.
This is not to blame anyone, there is no one to blame, I did not choose my genes. I guess this is something most RP patients will ask, can my partner accept me when I am blind, can his/her family be able to accept my condition and how if I choose not to have kid? This is my experience, everyone goes through different experience.
Yes, I decided to leave Melbourne and go back to my hometown to be with family and fiance. Is a small city with terrible or almost nonexistence public transport. I decided to stop driving, I do not want an accident to happen to other people just because it was more convenient for me to drive. The first week I am back, everyday my parents will drive me to my then fiance’s home, which he lives with his family. We work in the same place. That week, every day his mum attended Qi Gong classes.
After a week, on a Thursday specifically, his mum did not attend the class instead, she stayed home. She told me she has something to tell me. She said I came too early and it disturbed his son’s sleep. I told her honestly, I told my fiance, I will follow my brother in law to work as he lives nearby and needs to send his son to school but my fiance insisted I followed his car. Then his mum said, you need to be independent, once in a while you need to drive. This was a slap in the face. She did not know my condition.
Before I decided to get engaged, from the start of the relationship, I told my ex, please inform your family about my eye condition and he replied he did. His parents said it is up to him to make the decision. He said he choose to be with me, that is why I agreed to go with the engagement. I have nothing to hide. I told her nicely about my condition, where I am slowly losing my eye sight. And she said sorry for bringing this up and she made a point to add that I must realised that things are getting more expensive now. I replied her honestly, I am glad she brought this up. I have nothing to hide. She told me to meditate so oxygen will flow to the eyes. I agreed. Then she said maybe you guys should consider getting married and age is catching up and you might have problem having kids. This was the biggest slap, she didn’t know this is a genetic problem. I told her nicely, you are a mother, you should be able to understand how I feel, I cannot put myself to have kid knowing I am going blind and to have a kid like my condition, I really have no heart to do so. I said I am Buddhist and I know, as long as I am on this earth, we have to go through this suffering. Her replied, this is my karma. I am glad all these happened right in front of the Buddha statue because it gave me this calmness, superficial you might called me. I gathered myself and by then my ex came out from his room. I am glad his brother followed in the car. It gave me time to think through things. Before this, we agreed no kid but when my then fiance saw the article on surrogate mother, ovum donated from others, he did brought the topic up. But from the start I really do not want to burden another human being.
That afternoon, I confronted him, why didn’t you tell your family? Why did you lie about telling your family when you didn’t? He replied, he really love me for my honestly from the start and my willingness to communicate about everything. The trust is broken, I think his mum “rescued” the situation from turning bad. From the start until now, I do not blame him, I do not have the heart to blame him at all. He is a normal person that only want a normal family. Now is clear, I know his family really want him to have a normal family and most of all, he wants kids. My personal advice, in a relationship, if both are heading the same direction, is alright but when both are moving the opposite ways, re-evaluate the relationship. Is hard now but is better now then later, is for the best. I did not see this coming but is not surprising. I think I am upfront about my condition, preparing for the worse, despite all these, things might not necessary turn the way you expect, because age changes what we want. I too understand, time heals. I only wish him and his family the best.
A good friend asked me, what is your plan now? Pick up the loose end. Finish my PhD, be comfortable in my own skin, to travel again, maybe design things for the people like me or teach programming to kids 🙂 Keep the hope alive! This is my karma! 😀
I live my life never letting RP stop me, just to fall for this one! From the start I made it clear, I am going blind and this is a genetic disorder and we are not going to have kid, again and again I reminded you. I never see this coming, calling off my engagement. I fear my kid will be like me, my parents didn’t know, but I know the consequences clearly. This is a normal question RP will ask themselves, do you want kid that might have the same problem at you? There are those that are brave, knowing everything and still take the risk, I do not fall into this category. Self sympathy is strong, but I need to let this go, I come so far for my PhD, I have to finish this.
Goodbye my love, wishing you and your family all the best..if you think this is hard, is even harder for me…
Since the my last 21km last August, I never run more than that because I was concentrating on another thing on my bucket list, my PhD. Officially, I am done with 2 things in my bucket list, ran a full marathon 5H34mins and ran for awareness of medical research in for RP! #RPAwareness
If you would like to support my initiative: https://give.everydayhero.com/au/retinitis-pigmentosa-medical-research
Special thanks to Alex for the wonderful dinner, Trista, the amazing desserts and Lisa, for always being there for my runs! Love you girls heaps! Not forgetting the lady that gave me Allen Snake jellies!
The run experience, I started with the 4H20min pacers, slowly drifting off but is ok, is my own journey! I was upbeat till the end, the energy level was good. I was always running with the 35 years spartan runners! Another lady, her 200 marathons! Inspiration! Then there is those running for cancer. Most inspirational, almost heading back to MCG, there is this boy, cerebral palsy with his dad. Everyone was cheering for him, I past him and heard his dad asked him, “Do you want to do this?” He replied, “yes”. I turned back and saw his dad said we will do this together, his dad kisses him. Catching this moment melts my heart. Things happened for a reason, catching that moment showed me that the hardship I am facing is nothing compared to them. All the runners I came across, keep me grounded! This full marathon experience has been a superbly humbling one.
About the run organisation, there is no more energy drink after 21km, and no apple or banana end of the race. I walked the last 4km, because of knee problem. Honestly, it didn’t take me that long. Then my friend said even for 1/2 marathon, no apple or banana end of the race. I joined the year before and it was not like this! I am not even comparing to those overseas ones that I had ran before like KL or HK marathon. Even compare to Brisbane marathon, Melbourne Marathon really need to step up the game! #MelbourneMarathon2016
From a low point to a high point, the day before the race, I was told my dad was hospitalised and my dog died. I really want to finish my PhD fast and move on to the next stage of my life! Mentally, the starting part of this run, I was really anxious that I will not be able to finish. As the run started, I am imagining that Tung2, my dog is free now, the happy old Tung! Before this he had a stroke and can’t move. He was a good dog. Then the later part of the run, I feel I am so lucky, RP has no physical pain at all, compared to other diseases. I stayed upbeat all through the run because of this positive energy others generated!
“We are too busy to make a living till we have forgotten our dreams or is it that, we are so busy chasing our dreams that we have forgotten how to live? I thank early detection of RP, you make me realised life is more than chasing dreams. A simple word: living but extremely hard to balance!”
I really do not understand, why the idea was not accepted at first. The tactile really do not distract anyone at all but means so much to the visioned impaired. If I knew then, I would have stand up together with him! But I am still happy with the outcome!
My research is to find a way to detect meaning changes in revision in a multi author environment. Most authors think is for them but what has always been part of my design is to make it easier for the vision impaired to participate in collaborative writing. Vision impaired limits mobility and we are human, we are social being. I strongly agree with him, Design with the blind in mind, is a universal design. The awakening moment, before I was diagnosed with RP, it never Cross my mind designing with the blind in mind.
I thought I will not have the mental strength when losing so much of my sight, instead this “last” stage, I am the most courages. Have you ever tried making a hot drink with your eyes shut? 10 years ago I thought learning Braille will be the hardest, today I think learning to live when I am blind will be hardest. I am slowly learning, is alright to be vunerable but is not alright to give up.
I love chocolate and cheese but I don’t really like sweet things, I am such a complicated woman! Haha
I tried the recipe: Chocolate cheese cupcakes, but I changed castor sugar to raw sugar, reduced a little, the white sugar I changed to 1/4 brown and the rest raw sugar but instead total 1 cup, I reduced a little bit. My version looks nice and I love the bitter sweet chocolate cake with warm cheese!
The recipe taken from 3MinuteTV, brackets with modification
1 1/3 cup plain flour
1/2 cup cocoa
1 cup sugar (1/4 cup brown sugar 2/3 raw sugar)
2 tsp baking powder
- Mix the dry ingredients above
1/2 cup vegetable oil
1/2 cup milk
- Mix the above into the dry ingredients mixture
1/2 cup milk
- Mix the milk with the muxture well, till smooth
225 g cream cheese
1/3 cup sugar (raw reduce slightly)
- Mix the ingredient till smooth
- Add to the cheese mixture and mix till smooth
Muffin Tray, put in the paper cups and add in 2 spoons of chocolate mixture, 1 spoon cheese mixture and 2 more spoons of chocolate mixture. Repeat
Preheat oven, 180 degree, Bake 12-15 mins
Today is #uomopenday. The 1st sem I volunteered and followed a friend to checkout on the colleges, last year I accompanied my cousin to look around academic programmes and today is that time of the year again. The open day is to attract more undergrad and I am in no position to give my opinion on studies as I never do my undergrad here but I can share other things about the Uni, which to me, are important factors: undergrad is the transition of teenage life to adult life and the other aspects build you as a person. Although I am only talking about my experience, you are free to choose what you enjoy but the general idea applies. My view is from an international student which has never study in other country before except for my home country and now in Melbourne.
Food! (Learn to cook 😉, is a living skill)
Yes, how could that not be in the top of the list! There is pizza place but honestly, not a fan of pizza but that shop has my favourite spinach and cheese wrap in pastry and it is $2.80. During winter, when I walk to my lab, I ll grab one and they heat it up, walking while eating a hot food in winter at that price! The same building, the union house,you get medium size coffee at the chill out bar $3.50. I am a coffee lover, is really not bad. Other than sushi, I love the bento! I love Lot 6, coffee is consistent and the muffins with crumble. Student pricing at its best! Once a week, there is free breakfast of bacon, egg, bread, pancake, cereal, milk, fruits. During semester, occasionally, you can find free lunch. I think I should have place this 1st, the microwaves free to use in the union house!
Volunteering (give yourself the opportunity to be responsible for your surrounding and it seriously don’t have to be about academics or career!)
Yes, My first sem, I actually volunteered for open day 🤓. I volunteered to mentor girls in my 1st semester. Lots of activities line up, as volunteer training is provided too. I volunteered to clean the fridge, coffee machine and prepare for grad students tea time.
Wellbeing (this is just the beginning to take care of the inner you)
I love this but not sure if it applies to undergrad but I would think so there is similar activities. The GSA organised mindfulness workshop and although I was trying it out because before this meditation did not work for me and I am hooked! A meditation believer now! There is yoga too but is super crowded!
Workshops (learn new things, meet new people that is good at what they do)
Leadership and academics skills, both which I enjoy. I love interactive workshops and the Uni is good at that.
Rowden library (what ever knowledge you have, is yours)
What so big deal about a library? There have non academic books, movies, series!!! Yes 😎
Running team (move that body baby!)
Yes, if you enjoy running outside of Uni, there is running team for outside runs like Mother’s Day, melbourne marathon, etc. they provide place to keep your things, snacks. You can even meet students from other Uni because is under the Uni hub. The team can be further improved, such as training runs, meet up, etc
Counselling (sometimes you just want someone to listen)
I used the counselling service only once. It will be unfair for me to rate but there can be room for improvement such as following up.
Little things such as shaded areas, where I can sit and have lunch or read in a good sunny day in Melbourne!
One important point I want to share here is, think carefully what degree you want to do and where you do it. It is not end of the world but some how it pre-determines a lot of things about your future like friends for life, career choice, lifestyle, and to some extend, place to life or work later in life. Good luck and have fun!