Just Heard Some Tragic News

A former student of mine, who I have mentioned on here before, is in hospital on borrowed time with heart failure. She is quite possibly the strongest most positive person I have ever known. She was diagnosed with Friedreichs Ataxia, which is an awful condition that robs you of muscle control and causes all sorts of problems. She was in a wheelchair at the age of nine, and it just progressively got worse from there. She always wanted to play the guitar, so I taught her for around two years. I can honestly say each lesson was an inspiration. She had such a huge impact on me because I just couldn't believe how much strength and positive energy she had. She constantly laughed and joked about everything even though she was steadily losing the function of her arms. Eventually, she had to quit because she couldn't coordinate anymore, but she said at the end, "I still got to play though didn't I" with a smile on her face.

I never heard her complain once, yet her life was difficult to watch with all the stuff she had to deal with. She is now in a serious condition in hospital, and she just messaged me to ask how me and my wife are doing. I didn't realise how ill she was until her mom sent me a private message. She's currently on Facebook asking how everyone is and still thinking about others. I know we shouldn't compare conditions because everyones suffering is unique, but I tell you one thing, this girl would eat tinnitus for breakfast.

It's really affected me hearing this, and this site is kind of an outlet, so I felt the need to share her story.

 

Sorry to learn about your friend Ed. You are so right about the strength and perspective of so many with life threatening illness. Compete acceptance of fate.
No shortage of suffering here on earth as we are reminded everyday on this forum.
How we respond to personal suffering however varies greatly and inspiration can be drawn from those who suffer the most. My personal hero in this regard is the man that had everything...FDR who lost the ability to walk in his late 30's and lived with chronic neuropathic pain the last half of his life and went on to be our only 4 term president. A remarkable man.
Be well.

 

Hi Ed,

That is definitely sad news, yet should help us to keep things in perspective when we deal with tinnitus. I am enduring a spike right now (likely due to stress with my job), but it is definitely nothing as compared to what this poor, yet strong young lady you mentioned is going through.

 

perhaps your tinnitus.

 

It is very sad to hear though I think our condition can be quite as debilitating as that.

I have had severe eye problems since birth, my vision is low so I can like drive, do any kind of team sport that involve vision, I have to be 1 meters from the TV to the it clearly, can't read on a phone or computer unless I zoom the text or I have my head glue to the screen, can't see the board in class... I also have skin problems so I can't go to the sun too much or I'll get skin cancer. I might also die in my 40s due to pulmonary issues.
Yet all those things, even if they can be annoying sometimes, never really bothered me and people was always finding me the happiest and I never complained.

But T, or in my case the very annoying H, is quite different. First of all you get absolutely no support for it, from doctor or friends or family, everyone told me it's no big deal. I had more support when I had appendix removal... On the other hand I could have plenty of support for my other issues, which for them were a big deal but for me not really.
Plus for me H took away all the things I loved. 90% of the stuff I did in my free time involved listening to something that came out of a speaker, which was almost always music. I can't do that anymore, can't really play the guitar. I also took a career path which would allow me to work in music. Therefore my work has really no meaning anymore. My dream was to go to a huge music festival with close friends that I don't see often, which is dead now.

I think the impact that a condition can have on you depends of what it takes away from you, the amount of support you have and the chances you have to see it improve. And when you get something from birth it's really different.

It does take anything away from this story though I think she's really strong too

 

Do elaborate.

 

... but you do. It's totally counterproductive to compare. Every sufferer suffers for a reason, no matter what it is. It is not right or wrong, that's just how it is. No one here will get better because "you know, there's always worse".

What we should remember from this story is that the girl still finds the strength to do what she likes to do and what she can do.

 

I think he just meant that some people are so optimistic and so strong, that whatever affects them is not a problem

 

Being strong and optimistic does not prevent the suffering. You never know what people feel deep inside.

The problem with comparing conditions is that it supposes that some people suffer more than others from the same thing just because they are not as strong. It ain't so simple.

 

Yes, keeping an optimistic mind does not prevent from suffering. We agree on this. I meant, not a problem for their state of mind, for their happiness. Indeed the suffering is there..

 

Last week, I have a close friend who attempted to commit suicide on her 30th birthday. She took 30 benzos and ended up being found by her boyfriend. He rushed her to the hospital where the meds were pumped out of her stomach. She's scheduled to leave tomorrow, but she's still suicidal.

She's suffering. And so am I, but just in different ways. I don't know what it's like to have been sexually abused by an uncle as a child, and emotionally abused by a boyfriend (now ex) as an adult. I don't know what it's like to be bipolar like she is. On the other hand, she doesn't know what it's like to be a hyperacusic, to be in pain and fear because of everyday sounds.

My only takeaway from all this is that the world sucks.

 

I'm quite disappointed that a lot of you are hung up on that quote. The intention in that was to give a dramatic perspective on the positives in our own lives. I know we have all suffered immeasurably here, but what I have seen this girl go through is horrendous beyond belief. She wasn't diagnosed until she was nine, and up until then she was a normal kid with dreams and ambitions. FA is very similar to ALS, the condition Stephen Hawking was diagnosed with. She was told she would be lucky to live into her twenties, and that her organs could start failing at anytime. This causes immense pain and there can be difficulty breathing amongst other things.

I think a lot of how we suffer is driven by our personalities; the people we are. We can't help but worry, or be incapacitated by things that others can plough through with a smile on their face (I know I'd be on my knees crying every night). I believe she is one in a billion, in terms of personality, the like of which I'll never see again. She is a shining beacon of light demonstrating there is a strength within us all to get through even the most deplorable of situations.

We should count our blessings, look to the positives in our lives, and realise that we get the chance to live a life. No matter how hard the struggle, we still have that opportunity.

 

I'm really sorry to hear about that, that is tragic. I hope she gets the help she needs and finds some solice. Stories like these are hard to read. My heart goes out to you.

 

@Ed209, I get what you're coming from. And she does sound like an inspiration. People like her make me want to go on.

But I also get where the others are coming from. Since getting T and H, even doctors (who are supposed to help me) waved me away with "It's all in your head" and "Just learn to live with it." Family and friends would just say "Can't you just wear earplugs? Aren't they like glasses for the ears?"

It's one thing to suffer; it's another thing to be dismissed which many of us here feel.

As for my friend, yes, I really hope she pulls through.

 

Your post kind of makes me feel like I'm losing my rationality because of this. I've already notice that I'm becoming a bad person, hate seeing other happy or succeed, unless it's a H sufferer which gives me hope... This sucks clearly

 

You're not a bad person at all. None of us are. We are all just trying to find our way in the world, but sometimes things change and we are forced to deal with it. I too am a musician and I've had to put a pause on my career. It may be temporary or I may get back to it; right now I don't know which. I know that tinnitus derailed my life though, but we've got to soldier on haven't we? Give life the best that we can and come out the other side saying, 'you know what, that was a pretty awesome life after-all'.

 

What is worse? T or H? I don't really understand what h is to be honest. Is it like a short stabbing pain when sound is present? Or is it prolonged?

 

I do think that the lack of empathy from others, in our case, does chip away at our personalities. I've found I can be quite cynical nowadays, and quick tempered on my bad days. It would be nice if we could put a speaker on the side of our head (playing the noise we hear) so we could drive the rest of the room mad as well.

 

The worst for me is that H makes the T a little bit louder everyday, and that never goes back. It's been like that for 8 months.

I had a dentist appointment yesterday morning. It made H and T spike. At the end of the day, my girlfriend came back home. She could not even talk to me, her voice was too much to handle. I can't describe it, I just couldn't take it. She had to whisper at a fair distance. H can take many different forms, but that's one example.

 

I rarely get pain, only if the sound is loud. For me it's some frequencies that are really loud. Its like if I were next to a siren but the sound in reality is just a small bip. And those sounds feels like they come from your head. Like at my parents home I have to turn off the light because I can hear the electric sound it emits when I'm at my desk and it's so loud it feels like coming from my head. Same for my fridge. Subway stations are awful I hear a really high pitch noise when I'm in there.
I also hear some tones on top of other frequencies. music is awful because it's do unbalanced and bright, and the more I listen to it the more it amplify the thing. And sometimes with music I can get a feeling like something breaks in my ear, it's hard to describe. If I use strong EQ I can listen a bit with my good ear.


Luckily I don't have problem with voices anymore.

And when you have H it can be hard to mask the T because you have to find a sound that is not annoying to you. Plus it can worsen any time with one bad sound.

I'd say that H is worse than T but again this is just my perspective. If I had a stronger T and didn't care at all about music I'll probably say T is worse.

 

Partly, but far from the whole picture. An issue on this forum is everybody derives their perspective from their personal experience with T and/or H. No. Far from the truth. Living with a light buzz in your head isn't the same as jet engines 24/7. In fact, the difference is so profound there should be another name for intrusive tinnitus...but it is lumped in with milder forms most have.
I hope that helps broaden your perspective. That is what dan meant. Further reading VRZ78's account is so heart breaking. All his issues + tinnitus. Speaks to the unfairness of life. Yes, people's capacity to suffer varies widely but pain and suffering with disorders perhaps eclipses people's capacity to cope. One can be dying and suffer very little for example other than knowing what is coming which for many brings comfort at long last.

 

Thinking of you and your friend and her family ....lots of love glynis

 

I really don't want this to descend into a 'who suffers more thread', that was far from my intention. I know we have all had a pretty rough run lately, but I felt her story could help bring hope to some. That no matter how dire a situation is, with the right help, you can have a happy life.

Her message yesterday touched me beyond belief; even though she had just been told her heart is failing - and is in a very serious condition - she was still concerned with how I was doing.

My personal experience with tinnitus is far from a light buzz, but I'm well aware that we each face a very different battle.

 

Thank you Glynis.

 

Fully agree with Foncky. No-one can know what another person is feeling or compare one medical condition to another.
It is just like some of these doctors that write books on tinnitus and say that it isn't life threatening. By itself tinnitus is not life threatening but if it is severe enough, it can seriously affect someone's state of mind for them to go and do something that under normal circumstances they wouldn't do, if they weren't experiencing loud intrusive tinnitus. That is why I know, these doctors that write tinnitus books, the majority of them have never experienced tinnitus, to the degree that it becomes debilitating.

It is another reason I wouldn't go to one of these tinnitus seminars. These so called experts pat each other on the back and know as much about tinnitus as I know about rocket science. Granted, they know all about the anatomy of the ear but they know nothing about tinnitus.
Sorry to go off the subject.
Michael

 

I think this thread should be a place of inspiring stories,about other peoples immense suffering and how they coped with it regardless of everything that happened to them,and as such I too will share a very personal story about my late brother and his amazing bravery and strength,what makes it worse is that he should actually still be alive today.

I won't drag this out,I'm sure everyone has better things to be doing but my brothers problems began one night when he started getting weird headaches,they persisted and persisted and we're getting worse and worse.
He and my mother went to our family doctor and after an examination was told everything was fine and that they would probably pass in time.

A few weeks go by and the headaches had not gone and now he has horrible pain in his left ear and tinnitus,worried my mother brought him back to the doctor and he was diagnosed with a middle ear infection and sent to the ENT for treatment.He received a grommet and anti-biotics and was sent on his way and was told he would be fine in a few days.

Another few weeks pass and the headaches are only getting worse and his ear infection had returned yet again,fluid was getting trapped behind his eardrum.
Again they went back to the doctor but this time my mother was extremely concerned and begged the doctor to send him for further investigation,the doctor told her she was just being a paranoid mother and that nothing was wrong but my mother refused to leave until a scan was ordered.Reluctantly he gave in and a scan was done of my brothers head,when we got the results back they were clear according to the doctors that performed it.

My mother kept pushing for further investigation but she was constantly being denied as there was nothing wrong,that she was just being paranoid.

Weeks go by and my brothers condition was worsening and it was then that the harsh reality had hit,the dawn of something extremely sinister taking place was presented right in front of us.
My brothers left eye stopped moving,when he tried to look side to side the right eye would do so but the left would continue to look straight.
He was rushed to the doctor and sent immediately to hospital pending serious emergency investigation.
We all waited anxiously and then the news came,my brother had a tumour the size of a lemon in his nasal cavity and that it was cancerous.

He was started on treatment straight away,it was going to be a rough road ahead of him but it didn't even phase him one bit.I remember talking to him that day and he told me"fighters fight and quitters quit and I'm not the latter"

And so began his long arduous treatment regime consisting of chemo and radiation and all the other horrendous crap that comes along with it,he never cried or got upset once throughout the whole thing,he laughed and smiled like he always did everytime I spoke to him,there was no sadness or fear in him,something I couldn't understand how.
My brother was the veinest guy you could ever meet,always looking in the mirror,checking his hair always about his appearance,he was a handsome guy and believe me he knew it!
But for him see himself fade to bones and lose all his hair didn't bother him,he took it all in his stride everyday and never got upset about it.

Then the big day came,he was finished treatment and was going for his final appointment with the doctors,we all waited with our breaths held to hear the news,the tumour was completely gone and there were no signs of any cancer,he had officially gone into remission.
We all jumped up for joy screaming with happiness,my dad who never showed emotion broke down crying at the news he was that happy!It was one of the best days of our lives and the joy in Jason's face just simply couldn't be measured.

We returned home and all the family were there to celebrate the good news,it was an amazing night that would sadly be followed by an inconceivable nightmare beyond all our expectations.

The following day my dad got a call from the hospital,they requested a meeting with him,my mother and my brother.They left the house thinking it was the follow up meeting about the aftercare he was going to receive following his cancer.
When they met the doctor it was not what they had expected,the doctor looked up and told them that something had showed up in the blood and that a fully body scan needed to be done immediately,they took my brother off and began the long arduous scanning process followed by more and more tests.
The result,a micro fraction of the tumour had made its way to the blood,he now had a tumour in his spine,kidneys,liver and lungs and more could follow.
The cancer had basically gone right through him and heavy treatment began immediately.

Again,it didn't phase him and he took it all in his stride and was prepared to keep fighting this no matter what it took.Months and months had passed of heavy treatment and he no longer resembled the same person,the treatment had made him all but fade to nothing but still he didn't let it phase him,always out and about laughing and joking with everyone,he was the one cheering us up when it should have been the other way round!

He never once cried,complained or showed any emotion whatsoever throughout the entire thing,he just kept smiling.

We decided to fulfill his wish,it was his dream to live in New York City,he was in love with the place constantly watching absolutely everything he could with New York City in it,even Sex in the City and he hated the show!


We brought him to New York for a week with the make a wish foundation,his wish was to spend a day with the NYPD,a police force he heavily admired after the terrorist attacks of 9/11.
We got to meet the New York Police commissioner,got a tour of their headquarters,Jason got brought on a ride along with two detectives,brought on a police boat and given a tour of NYC by water.The only time I seen Jason cry was when he got to ground zero,out of respect of the horrendous tragedy that took place there.NYC meant that much to him.

Upon returning home Jason quickly deteriorated and his final visit with the doctor confirmed it,he told him straight to his face that it was terminal and that he had a few months to live.He stood up,looked at the doctor and said,and I'm not kidding here"what will be will be,it's not over till it's over,thanks for all the help but if this is the case I got places to go and people to see"

He didn't cry,or show any emotion whatsoever,he just accepted what was going to happen and that he was going to live his final months as best he could.

And he did,he was given 6 months to live but sadly only saw 1 before passing away,even on his death bed he was smiling at us,not a tear or bit of emotion to be seen.

His story was well known in our parts and at his funeral,an Irish soldier who was a family friend had seen how Jason faced the entire thing with absolute bravery and determination walked up and placed his very own medal of bravery that he had earned in conflict into his coffin.
I remember him saying"I always thought I was brave and that I deserved that medal,but after what I saw I now know what true bravery looks like,he deserves this medal more than just about anyone else I know,myself included"

Throughout it all he never let it get him down,he never let it wipe that smile off his face,not even on his death bed.

What makes it hard to bare is many things,but the hardest is knowing he should still be alive.

After his death there was an enquiry,my father asked a top cancer specialist"if he had been treated earlier,if they hadn't of pushed him off for all those months,tell me with certainty would he still be alive today?"

The professor replied"if I was to stand up in court I would have to say maybe,but if I was to tell you the truth in private yes,your son should most certainly be alive today"

My brother died of medical negligence,the doctors pushing him away telling my mother she was paranoid,the scan they done later turned out to have the tumour on it clear as day but they somehow completely missed it,twice!

The form of cancer he had was one of the most treatable if caught early enough,by the time they finally got their act together it was already too late.

Despite it all he just laughed and joked from the very beginning to the very end,despite the horrendous suffering he went through like using the use of his legs he just kept on smiling.

I know it's not much to do with T and H,but it's still something to think about when you think you can't keep fighting,if he any others like him can fight like this a lot of you here can too,it's never easy but it's the amount of fight you put in that counts.

 

Bill, I can't even begin to imagine what you and your family must have gone through. Your brother sounded like a remarkable man, and you must be very proud of him. I'm sorry for your loss; life can be very cruel.

 

My thoughts are with @Ed209 and his inspiring friend.

On the topic of tinnitus, I can't speak for anybody, but subjectively, everybody experiences life differently, and has different challenges. Someone may find a condition like tinnitus difficult

Without being disrespecful I will comment on the sentiment of comparing other health conditions to tinnitus. Tinnitus is not life threatening, which is actually part of what can make it so difficult to deal with. I know why for instance, I find it so difficult to deal with. Without speculating or making assumptions, one might suspect that Ed209s friend had a loving and supportive upbringing, at the very least, Ed209s post and sentiments towards his friend is direct evidence of that alone - that she clearly has had some good people around her including Ed209. This can make all the difference in how a persons personality is formed, and approach to/experience of life is formed.

Others who have had abusive childhoods/upbringings will have a more difficult time with "life's ups and downs". They will have a more difficult time viewing the ups as ups. When someone with a difficult psychological background get struck with tinnitus and hearing issues, they may not cope well. Especially if music, was the one thing that they found solace in, the only thing they ever had what they consider success at, and the only social outlet they had. and now because of hearing issues, it no longer brings them joy. They can still hear it, in fact they can't go into a grocery store, or watch tv without having to hear it, but it doesn't sound right anymore, and doesn't elicit comfort anymore, in fact it causes discomfort. Their one security blanket, has been lined with barbed wire.

But again, tinnitus is not fatal, so they know that they may live like this for many many years, and that it may get worse, and become more difficult to deal with, but still will never be fatal, never be visible, and few will understand how it affects them. They must remember that in addition to the struggles they are having now, they can, and will have more health problems in the future. So it won't just be tinnitus and whatever else they already suffer from, but tinnitus and kidney stones, or tinnitus and heart disease, etc. Until it finally becomes tinnitus and a terminal illness. Stacked on top of the fact that tinnitus is not the first or only health condition they have to begin with, but it is perhaps the one they find most debilitating, hence why they come to this forum. Tinnitus is not always a random condition that happens by chance either, sometimes the way one gets it can be quite traumatic.

Some people seek euthanasia for tinnitus, so if they hear about someone dying of another health condition, they may in a sense envy them, but then they may feel incredible guilt at what would likely be viewed as such a bizarre and inappropriate thought. One that may even offend the person dealing with a terminal illness.

Life is complex, just thought I'd offer any insight I could into the intricacies of tinnitus, and health conditions in general, and how people experience them.

I really appreciate Ed209s post, he is lucky to have such a nice friendship with such a nice person, and I appreciate you sharing your friend and her strength and inspiration with us.

 

I relate entirely... Sometimes I find myself fantasize about having terminal illness, at least I would die without hurting my family too much, in comparison with ending it all...
What's funny I'd that years ago I imagined myself with H... I'm kinda weird yeah

 

I can also relate to this as well. Earlier in my life I developed a condition which put me into a deep depression. In fact, I was so down after the second surgery that I hoped I would die. It was an absolutely horrific time in my life. Then I found solice in music, it was partly why I picked the guitar up in the first place, because it transported me to another world. I developed a mild form of tinnitus when I was around 20 or so (I can't remember exactly when) which initially effected my mood and sleep but I habituated to it and carried on. During my college years there were a lot of band rehearsals and gigs in general. We were never warned about the dangers of sound at all. Fast forward to around 18 months ago and I awoke one day with the most awful high pitched ringing noise, and on top of this I was getting electrical zaps around my head and the usual hissing sounds. I also had a drone in my left ear and occionally this would turn into cicada sounds as well. I'm like many others on here, my noises range from annoying to unbearable.

The first weeks/months of this new louder T were probably worse than the hell I went through in my younger years with my other problem. I too wanted to die and suicide was very much on my mind. I also had thoughts like: 'if it were cancer I'd at least get treatment or die'. I don't ever want to go back to feeling like that. I couldn't even get out of bed. I have battled to get to a place where I am content, but the one big love of my life, music, has been hugely affected. I try not to let it bother me too much because my recovery strongly relies on my 'acceptance' of my situation. The day I accepted what I have to deal with was a revelation for me. I started to build myself back up, brick by brick, and I really feel I am making good progress.

I occasionally venture back on here because I genuinely want to help others. There is no other reason for me other than that. The help I received early on from the people on here was critical. Let's face it the Drs don't care and I paid good money to go private. What I found was: I got out of the suicidal stage but started to spend my whole day reading about tinnitus and researching it. After several months I realised it was destroying me and I had to try and live a life again. This is where I'd say I started to accept my situation and I started to improve a lot mentally.

At the moment I'm doing a hell of a lot better - compared to the mess I was - but there's still more to go. I am optimistic I can get back to a very healthy mindset and be happy about the future again.