What Is Usher Syndrome?
Usher Syndrome is a genetic disorder that causes progressive hearing loss, vision loss or retinitis pigmentosa. Not to mention balance problems. Last but not least, even though there is no cure available, there are treatments available that focus on managing symptoms through hearing aids and cochlear implants, vision aids, rehabilitation, and early intervention, while research explores gene therapies and drugs to slow degeneration.
So… I am kinda praying for the superior forces, the gods, whoever is able to, just give me and my boyfriend a break.
So very recently he got a new cat, or rather this new cat invited himself into my bf’s house. And today we discovered he has cancer.
I cried for a while in a room alone just to have some composure and be able to be a pillar of support to my boyfriend, be the shoulder he can cry on when he needs.
I asked the universe to please let me feel less tired, so I can be more of a use, to be able to not need so much rest and leave my bf hanging when he needs someone to support him, and I’m his main line of support because of some reasons.
Why did I title this post referring to a death spree?
Late 2021 to early 2022, his cat, that was so close to him, died of feline leukaemia.
2023 my cat who was almost 19 years old, just one and a half year younger than me at the time also died, and I fell into very severe depression relapsing almost to 0%.
2024 he lost both his grandmothers, and that also added more to worry as I was really worried of my MIL and FIL because they just lost their mums.
Also 2024 I lost a friend to pneumonia. Tho I’m young I have lots of older friends and she was over 60.
2025 about a month and a half my boyfriend lost his oldest cat that grew up with the one who died of feline leukaemia. She died of a cardiac arrest after having a second rectum prolapse and was in recovering from the surgery.
What kills me inside is that all of this is happening, we have no pause to pull ourselves together, both me and him are getting stuff happening that aren’t only our cats getting sick, one of mine didn’t die but she had to get emergency surgery for a ≈1 centimetre diameter stone on her bladder.
And worse is that he has an alcoholic dad and that makes me so sad, because my grandpa died out of liver cirrhosis due to alcohol abuse, and my friend’s father also died last year due to liver basically becoming non existent after so many years of alcohol. So I know his father is being a time bomb at this point. His mum wants so much for him but she doesn’t know how to express that and ends up being really harsh and that adds up a lot to his emotional. And as for me, I’m living in a toxic environment that I want to leave so badly but I just don’t have the money to go somewhere else and I’m doing so many stuff, from job hunting, to doctors appointments to blindness rehab that I’m just so tired all the time, I go to sleep at night tired, I wake up tired, and I have to basically suck it up because the world doesn’t stop regardless if I need time, if I need a pause, time doesn’t stop, and I’m forced to continue a fight I’m just overwhelmed of.
My psychologist asked me today if my case is Retinitis Pigmentosa, which 100% leaves with light perception only, couldn’t be that when I lose it all, the technology is better? And I had to reply with a big rant about how we are seeing an inversion of values, a regression, a war scenario. And I told her that yes, technology have the potential, but how can I trust humanity will seek it?
I’m really tired and I just don’t want to deal with more death. To some cats and dogs are only animals, to some, mourn for a pet is being fussy. To me? I mourn for my cat all the time and I cry so much sometimes because I remember her and I just miss her so much. I know people is born and dies everyday, people and pets, but it would be nice to just get some time to process, to mourn, to cry, and to stand up stronger rather than just stand up because there’s still a war to win, but the troubles’ army is made of thousands and we are just 2 people. How are we supposed to just get through it? I know we need, but I’m really tired.
Here’s a photo of my now deceased cat, so I can look at this post and remember her, not with grief, but with love.
I love and miss you Mabel…
And I also love and miss Miaki and Sophie.
I didn’t know you so much, but I hope you’re well in the afterlife grannies.
I hope you achieved your spiritual goal Lilly.
And I seriously hope that you can hold on for longer that anyone of us believe, FIL.
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I gradually lost my sight over the course of a 12-year period, starting at just 18. This process was not without its emotion and challenges. Having been both an athlete and a scholar, I needed to reset the expectations I had for myself but what I also learned, sometimes the hard way, is I had to do the same for those around me.
The diagnosis of any #Disability affects the person at its center the most. However, those who love or care for that person also go through a range of emotions, including grief, anger, sadness, and anxiety. The first days, months, and years of processing a diagnosis can make for awkward and uncomfortable encounters between a person learning to navigate their new normal and the friends, family and caregivers doing the same alongside them.
In the years since my own diagnosis of #RetinitisPigmentosa , I’ve mentored many and had conversations with even more on the emotions that follow learning you or someone you love has a disability. Through these conversations and my own journey, I can share three things that I know to be true when it comes to showing up for someone during this process.
1) For those who have received a diagnosis, you have every right to the emotions that follow. Rage, grief, and shock are all normal parts of realizing the plan you had for your life will now be different. As difficult as it is, try to realize that people who care for you are also recognizing this at the same time. The hopes and ambitions they had for you are also shifting, which can lead to overcompensating in some areas, and underperforming in others. I have found this to be especially true in parent/child relationships. My advice is to try to have some sympathy by acknowledging their feelings and saying you will talk when you are ready about whatever the issue or problem bothering everyone most is. Sometimes that promise is enough to keep things from boiling over.
2) For those who love someone coming to terms with a diagnosis, the most important things to give are respect and space. I was once at a conference where a father expressed his dismay that his daughter had not yet left her room to meet people with her same disability. I gently reminded him that if his daughter was there, but not yet ready to mingle, that was still progress. Instead of fretting that his daughter was not present, I recommended the dad take the time to meet people that may be worthwhile for his daughter to know when she was ready. Forcing timetables or tasks is a quick way to make a difficult time even harder for all involved.
3) For caregivers, try to continue behaving as normally as possible. As I began to lose my sight, people were quick to trip over common phrases that they thought might offend me – like “Doug, did you watch the baseball game last night?” They’d quickly follow up by saying “I mean, listened. I’m so sorry. I know you can’t watch it. Did you listen to the game?” Now, I can laugh at it, but at one point, it made me feel even more isolated than I had already been feeling. From using colloquialisms to keeping normal traditions – let your friend or family member with the diagnosis set the tone rather than self-limiting.
These hard-won lessons took decades to distill, understand and practice. This process is hard. But on the other side of this work are deeper loves and friendships than anyone would think possible – and from there, the second part of your life, not the one you planned but the one that is - can begin.
When I was 18 years old, I started to lose by vision. As an athlete, the signs, at first, were small – missed passes from my teammates on the basketball court. Losing a fly ball in the air at my baseball games. Not following my golf ball’s trajectory on the course. I went to see a doctor thinking that it was something perhaps with my brain and was shocked to eventually learn I had Retinitis pigmentosa (RP) – a rare, degenerative eye disease that makes cells in the eye breakdown over time – eventually causing vision loss. I have one of the most severe cases of RP that one can have – and by age 30 I was completely blind.
For years, as I worked through a range of emotions, I always knew one thing - I was determined to not let RP define who I am or what success I find in my life. Up until the point of my diagnosis, I had planned on being a doctor – and while that course was, and remains, unavailable, higher education and career fulfillment is absolutely not. Through a lot of tenacity, problem-solving, failure and entrepreneurship, two years ago I found myself starting a new job at NSITE just outside Washington, DC. Here, I have found my deepest purpose – helping blind and low vision individuals find jobs, while also helping companies and products make their tools more accessible to everyone. In my spare time – I’m entering my fourth year as a goalie for the U.S. National Blind Hockey Team because being blind has never dimmed my love of sports!
The journey to this role and this life was not a straight line. I hope as part of this community I can share a bit about my path in the hopes it shows other blind and low vision individuals how they can find fulfilling personal and professional lives, even in the wake of the unexpected.
I’m always happy to talk to anyone who has lost vision at any stage of life, to help them understand what steps they can take to come to terms with their diagnosis, and when ready, start to think about what is next.
I look forward to learning more from you all, too.
The moments I remember are always filled with frustration, anxiety and #Depression. But it’s the time that I can still see the world. What am I going to do when I turn into #Blindness at last? Guess nothing needed to be focused specially anymore because all days will be filled with the same thing- sadness.
I really want to figure out a reasonable explanation about why god chooses me to suffer this. If I were talented, fine, then I would be the “selected” one who would be destined to go through difficulties first and at last make difference. However, I am just an ordinary, average-looking person, and only unusual in terms of the really fragile and emotional personality. I cannot imagine how to face the outcome with full consciousness. I cannot imagine how I can find another reliable partner except for my parents. I also cannot think out a way living independently by myself anymore, although independence is the most important quality which I truly admire.
I had been living without knowing my #RetinitisPigmentosa for 20 years. After then, I am struggled to deal with it. Sometimes I have a feeling that I am strong enough to overcome every challenge in the dark, while other time I am too terrified and desperate to do anything. I know it’s common for everyone, and I should accept the repetition.
There is no sadder thing to compare myself to others, and after being aware of that, I tried to keep my mind under surveillance and control. However, still, I am jealous of people who have healthy eyes now and then. Maybe it’s a warning to remind me of valuing the current life? Cause I am always the person who lives by plans and hopes. It gives me endless motivation, as well as #Anxiety. Be as it may, If I am healthy, I would rather choose motivation and anxiety. Well, guess now I have to choose current life or I don’t need to make decisions anymore.
You know what, I was once proud of my philosophy thinking way. Now, I am not going to read any articles about someone’s life stories and reflection. It leads to sadness, weakness and emptiness. It is not applied to the real and secular life at all. Instead, I prefer to read some practical psychological articles. And the best chance of me for now is to become a psychologist in counselling field. It can be seen that I am still paradoxical: for one thing I want to escape from life when I cannot see things anymore. for another thing, I still want to find a solution for the unseen future. I really hope that the day will never come, or come after I am 80 years old. Is it too long and a little bit greedy? Then maybe 50 I guess? Or, at least after getting my phd and obtaining a decent position?
Life is struggle. What is in your mind?
This is ME.
Me on the left, is what you can see.
Me on the right, is what I can see.
I am legally blind. And #HardOfHearing.
#UsherSyndrome. A combination of #RetinitisPigmentosa (RP) and #HearingLoss. RP is defined as gradual loss of vision leading to #Blindness. My peripheral vision is closing in and I have night blindness. I wear hearing aids, but, my hearing hasn’t gotten worse, so that’s a good thing, right?!
This is me. And who I am.
It does not define me.
it’s. just. me.
Just the other day, someone was shocked that I didn’t drive. He didn’t know the reason behind it, and when I told him, it was almost as if he felt bad. That’s one thing I don’t want. People feeling bad for me. There are others who are dealing with issues on different levels, in the ways they know how…
I explained my condition, kind of laughing it off because I’m used to the reaction when people look at me and tell me that they would have never guessed I was blind. What do blind people really look like, really? As for me, I don’t like making it obvious. I guess I try not to let it define me, because the fact is, I am still who I am. Whether I can see or not. Whether I can hear or not.
Trust me, I would love to drive; but, my license was taken away from me about five years ago. At the time my license was taken away, a friend of mine told me that this place could fix my eyes. I guess I was hopeful and wanted to believe it. Boy, was I wrong! A couple of weeks after my appointment (which I knew went to sh*ts), I felt like my whole world was crashing down. It felt like I lost my independence. You know how it feels to be told in a letter that your license will be taken away because of vision loss?
I was sobbing as I held the letter in my hands, wondering what in hell I was going to do. I couldn’t breathe, as the tears just kept on coming. My girls were worried about me, wondering what was wrong. I tried to keep calm for them, yet at the same time, I felt so lost and so overwhelmed in that moment. A single mom of three, how was I going to manage?
I couldn’t get to work from where I lived and would have to depend on someone to take me. Thank God my brother was around to help me out. My parents were more than supportive, and my sister texted me every day to make sure I was okay. But, I felt like I was a burden. How could I continue to live this way?
I felt like I needed to make some kind of change – I had to make things easier. So, within a couple of months, I was transferred to a different location, enabling me to take the train to work every day. Up at 4:30 am. Getting the kids ready. Walking to the babysitter to drop them off. Off to the train station, and work for 8am so I could be back in time at night to pick up the girls. Dinner. Some girlie time. Bath. And bed.
The 45 minute walk to and from the train station made me do a lot of thinking. Even though my landlord helped out a lot when he could, the stress was building up and it was showing. The stairs and steps were all memorized. I sat in the same seat on the train, every day. I walked the same path, every day. All so that I wouldn’t trip. All so that I wouldn’t bump into people, to avoid the dirty looks and rude comments. But honestly, how would they have known I had vision loss?! It wasn’t their fault!
But, after about a year of trying. After having stitches under my eye because I bumped into a printer I didn’t see the paper tray thing sticking out. After having to buy new glasses because I busted mine into a drawer while trying to get to another drawer. After getting hit by a car because I just didn’t SEE the damn car! The bumps. The bruises. I couldn’t do it anymore. I just couldn’t.
Call it a nervous breakdown, but I was done. My #Anxiety was out of control. The tunnel was getting more narrow, and I was hitting rock bottom. My mom rushed to come be with me because she must have known. She must have felt my fear and unwillingness to get myself out of the house. Trust me, moms know everything, even from afar!!
I ended up having to leave my job. I thought I could try my marriage again, for the girls; however, that didn’t work. But, I decided that a life in the country with my parents, until I got back on my own two feet, would be best. And where I’m at now, confirms the decisions I’ve made.
What happened, happened (and for the reasons it did), because everything happens for a reason.
Just because I’m blind, doesn’t mean I am restricted. Sure, there’s things I can no longer do, and sure my anxiety keeps me from doing some things I enjoyed doing. But it doesn’t mean I can’t be a mom or a wife, or anything I want to be. I just have to do my best.
My friends understand when I turn them away because most times, I would rather just stay home and not talk to anyone, and just focus on what I need to do for the day. And even online grocery shopping has been a blessing because I don’t have to deal with all the people and try looking for things on the shelves anymore!
But, I have my family. I have Mimi (my canine vision dog). I have my cane in case I need it. And. I am fortunate to still have some vision left. The last minute trips I take and things I want to do, is because I want to cherish and experience the time that I still CAN see and enjoy with my children and family, and close friends. Make memories with the people I love. Money is just money, and life is just too damn short.
Sure, I get frustrated when I bump my head against a cupboard, or a door is left open I didn’t see and I wham right into it.
Sure, I need to slow down a bit and focus on what I’m doing.
Sure, I see things from my heart that maybe others don’t understand.
And sure, I may have issues. But the worst thing ANYONE can say to me, is that I have issues.
I know I do!! We all do in some way!!
If you truly know me, then you already know I deal with the ongoing changes in my vision loss, my anxiety, my bouts of #Depression, the care-taking of my children, and just every day stresses. It’s called life. And if you really do know me, then you know I deal with the thoughts in my head on a daily basis that just multiply every time I think about all the little things.
Yes, I may have issues, but I have my reasons.
Yes, I may have issues, but that doesn’t make me any less then anybody else.
I want to live my life as much as I can with the people I love. I want to see as much as I can with the people I love.
As I hold my daughters’ face in the palm of my hands as I kiss each of them good night, I wish I could see them. But I can’t.
All I can do is feel their presence, hold them tightly, kiss them, hug them, love them. As much as I can. I have to accept the changes that come every day.
Sure, I cry from time to time, but it is OK, right? We all do, and I’m sure there are times when maybe you’ve felt overwhelmed and wondered what the hell to do. But. It WILL pass. You CAN keep pushing forward!
Me, I am so, so lucky for my support – my husband, my parents, my children, my siblings, my friends…I am so thankful for all that my husband does. He puts up with me!! I am thankful that he and the kids have learned my weaknesses and remember to, for example, leave things where they are, and don’t move from point A to point B within seconds, or I will be talking to a wall!!
There is light at the end of the tunnel.
There is love and hope, and I know it may get more frustrating as time goes on, but, I HAVE to. And I will.
Someone once told me to smarten up…that I am a lioness.
I have to believe this, not only for my sake, but for the people I love as well.
Be the lioness, or the lion! Be powerful within, and live life.
Be thankful for the beauty around you and just remember, there is a rainbow after the storm!!
As a child, I was never the sick one. I was the one who exaggerated any and all injuries to my parents. A sprained ankle or wrist was never cause for concern. I would get hurt easily. I couldn’t see well but not even doctors believed me.
My joints have been hypermobile all my life and I thought it was so cool. I used to show off my “double jointed” elbows and twist my arms 360 degrees as a child to show off how well my joints moved. People either thought it was cool or were grossed out. The reactions were fun nonetheless.
As I got older, injuries happened more frequently. My knees got bad, my wrists got worse, and my ankles caused constant problems. Dislocations, subluxations, sprains, but almost never breaks. If it wasn’t broken, I didn’t need a hospital. My joints always popped back into place.
As a junior in high school, my best friend had PCOS and a cyst ruptured her ovary. She went into emergency surgery for it. A few weeks later, pelvic pain started that just kept getting worse. After telling her about the pain, she told me it was the same as what she felt each month and to go to my mother. The first hospital trip, they overlooked ovarian cysts. When the pain didn’t get better, we went back. They had found a benign cyst on my uterus the first time, but a new test had confirmed I had ovarian cysts. The first scan had seen them but they were overlooked. I started birth control to stop cysts from forming.
When I was a senior in high school, I took a sports medicine class for my physical education credit because the doctor decided I physically could not handle gym class. In this class, I discovered #EhlersDanlosSyndrome during a musculoskeletal disease project. I covered hypermobility type, type 3, for my presentation. I demonstrated every diagnosing criteria on the test. I was asked if I had it and I said I didn’t know. It turned out, my father has it, and I do too. I missed school because of doctors, but, because my teacher was the reason I found out, all of my teachers understood.
Ehlers-Danlos Syndrome is a connective tissue disease. Each type has its own properties. Hypermobility type, the one I was diagnosed with, presents with hypermobile and lax joints, elastic skin that feels velvety, and some vascular problems. No one realizes how horrible it is to live with this condition. Vascular type, the type the doctors think I may have, causes a lot of vascular problems amongst all organs in the body. Many die by the age of 27 from aortic dissection. A geneticist refused to test me because I had not gone through an aortic dissection yet, even though all of my heart problems point to it.
I was diagnosed with premature ventricular contractions, low blood pressure, #SinusTachycardia that happens everyday, and one leaking valve. One valve later became three. I was told I may never be able to have kids because my uterus could rupture. My doctor has been fighting for years for me to be tested for vascular type, type 4.
The day before my senior prom, I was diagnosed as legally blind. At 14 I discovered I needed bifocals. Senior year of marching band, I realized I couldn’t see on the sides of my vision. Diagnosis didn’t come for years after, and I was diagnosed with #RetinitisPigmentosa. RP is a rod cone dystrophy that starts with the peripheral vision deteriorating. Some just get to that point. The second step is #ColorBlindness. The last step is being completely blind. I am currently going colorblind.
At 21, I went through a #Miscarriage. Three days later, I stopped walking. I could feel below my waist, but could move nothing. It started as one leg being hard to move. After a half an hour, I couldn’t move my lower body at all. I was rushed into the hospital for testing. While I discovered I have #Scoliosis, spondylosis, and four bad disks, nothing else came back. I was diagnosed with conversion disorder.
Conversion disorder is common in people who have been abused. After or during a stressful time or event, the mind shuts down part of the body to cause it to slow down and relax. Some go temporarily blind. Some become mute. Some become deaf. I become paralyzed.
While pregnant with my miracle son, I discovered that I had gone #Undiagnosed with acid reflux all of my life. Water had always caused heartburn. When told to drink more water at a prenatal care appointment, I explained that water caused heartburn. When they found out it wasn’t the pregnancy, I was put on two acid reflux medications. Nexium is my next option, but I cannot afford it and we are fighting with my insurance for them to cover it to this day.
I was diagnosed with Grave’s disease almost a year after discovering that my thyroid is hyperactive. I weigh too little for someone who is 5’7”, and have been accused of being anorexic due to my size. I’ve been told to eat a sandwich on many occasions. Someone even told me that I just need to see a dietician, after I was told my enlarged thyroid could be cancerous. I found out it wasn’t #Cancer, but I was still treated horribly.
On top of those, I have #Depression, #Anxiety, PTSD, #Asthma, a polyp in my gall bladder, chronic myoclonic #Epilepsy, #Arthritis, carpal tunnel, TMJ, an astigmatism, a tilted uterus, tendinitis, high functioning autism, chronic migraines, and many #FoodAllergies, one of which is deadly.
I have been called a hypochondriac. I have been told I have Münchausen syndrome. I’ve been told I’m faking everything for attention. I’ve had doctors look at me and tell me they won’t do tests because I have not had rare complications associated with certain conditions. When I can barely move, I am treated like I’m faking. If I used a handicapped device such as an electric cart, I get dirty looks.
I want people to realize that just because I look healthy, that doesn’t mean I am. My son is 17 months old and doesn’t yet understand that his mommy won’t be able to do things like play soccer and chase him around the yard. I dread the day when my son realizes how sick I am, even if I don’t look it.
Please be mindful of that seemingly healthy person with a handicap placard, or that young person in the motorized shopping cart. They may be sicker than you know.
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