monkeyby
1120179020
Posted 1168622458
Reply with quote
#1
I am a very close friend of monkeyby who often read and posted messages on this forum. I know he had been in touch with Julian and I am sure many of you helped him talk through his problems.
I have been unsure of writing on here, but his family encouraged me to post here.
Jason committed suicide around 29th October last year. I am finding it very hard to come to terms with. I know he suffered for over 6 years and he tried everything he could to get well and overcome the difficulties with tinnitus and hyperacusis. He was seeing doctor after doctor but to no avail. He loved music. He lived and breathed music like I do and it became unbearable for him.
I want to thank you all for your support and encouragement and he told me this forum had really helped him.
If anyone wants to write to me, please email industrialcutie@hotmail.com
Thanks and sorry to be the bearer of such sad news.
Monkey girl x
"Oh, Jeanne! In order to reach you, what a strange way I had to take."
Suomi
1165527666
Posted 1168624805
Reply with quote
#2
I'm so sorry, that is so sad. Being new here I never knew him but nevertheless feel so sorry for what happened.
Rob
1115044862
Posted 1168629107
Reply with quote
#3
It is very sad to hear that a member of our community is lost to us. It is completely understandable, and perfectly normal, that you would have a very difficult time adjusting to this terrible news. Please do what you can to take care of yourself, comfort his family and other friends, and reach out to your own friends during this very difficult time in your life. I'm very sorry for your loss.
Rob
bobm
1116125922
Posted 1168651641
Reply with quote
#4
my condolences to all,how very sad that this affliction can be so devastating.hopefully there will be a cure one day.
Mk
1167964412
Posted 1168652018
Reply with quote
#5
I am so saddened by this. I too, am fairly new to the board, so I never spoke with Jason. I wish that I could do or say something that would help. I am so sorry for the lose of your friend. Please cherish your good memories of him.
I too am a music lover, my son is a musician. Let Jason's memory live on in your love of music, and the hope that where he is now, he can once again enjoy it himself.
Mk
lib
1114651884
Posted 1168655960
Reply with quote
#6
this is devastating. we lost tim 2 years ago in december, same thing. i am heartbroken. i thought to do the same, and came close more than once. i am so sorry. suicide is a tough road, a lot of questions, anger and abandonment feelings. i know this as my father took his life when i was 15, a little over a year after my mother died. i can only say that the pain a depression takes over, from there on out i do not believe a person can really cope, some can and as we have learned some can not. i was fortunate to find help, and thats why i stay on the boards. we need more, we need drs to really see that this is a devastating problem, no matter what ear problem it is.......i am praying for you, jason, his family....and everyone.....and for better drs, tools, tests, and sympathy for any and everyone with a life altering problem.
Member deleted
Posted 1168713228
Reply with quote
#7
I'm very sorry and sad. I've had hardly talked to Tony (that was the username he often used), maybe once or twice. Sometimes he frequantly posted on that board, and I've read most of his messages, but I always had a bad feeling about it because his messages were often so very negative.
myztiphyd
1163350463
Posted 1168718405
Reply with quote
#8
I didn't get to know Jason, but I too am so sorry for your loss and the loss of the music world in general and well as that of his peers on this board.It is my faith that reassures me he is in a good space without pain or sorrow and hearing perfectly that which he so loved to sing and perform.
Best Regards
Debra
Rob
1115044862
Posted 1168721914
Reply with quote
#9
We knew him here as "TonyManaro" (a character from Saturday Night Fever) and as "monkeyby". His friends, family and admirers knew him as Jason DiEmilio from Clifton Heights, Pennsylvania.
I had the pleasure of getting to know Jason during the time he participated on The Hyperacusis Network. At one time he reached out to me for help and advice, and I spoke to him over the telephone on two different occasions for over an hour each time.
We corresponded regularly via e-mail. The last e-mail I received from Jason was four days before he ended his life. It was quite long, and he was at that moment very engaged in trying to understand the cause of his health challenges and what to do about them. I liked Jason very much, and would like to focus on the person while writing this post.
Jason was a guitarist who made independent, self-produced recordings with a band called "The Azusa Plane", taking the name from a Kurosawa film called Ran. (The Azusa Plane was the location where the family patriarch dies at the end of the film.) He also recorded improvisational solo guitar under the name "The Spires of Oxford", and played guitar in the band "Mazarin". The Azuza Plane recordings, which began in late 1995, were mostly solo efforts by Jason with some help from guitarist Jason Knight. During live performances, the two guitarists were joined by drummer Quentin Stolzfus.
In one of our phone conversations, Jason told me that prior to hyperacusis, he had struggled for some time with depression. The music he made -- a combination of psych, drone and noise -- was an effort to map the depressed feelings he experienced but to do so in sound. I thought this was a brave thing to do, in that he was trying to make something positive out of something which was personally very painful to him -- and in so doing, communicate with others.
He had more than 40 releases, mostly singles and EPs, on a number of independent labels. The Trouser Press described Jason's work as follows. "Multiple layers of guitar tracks are interspersed with contrasting strains of sound for a numbing overload damp with reverb and coasting on drones." His first full length release, Tycho Magnetic Anomaly and the Full Consciousness of Hidden Harmony , arrived in 1997. It was followed by America is Dreaming of Universal String Theory, a double-CD, and by a CD of live performances -- both issued in 1998. In 2001, he released The Highway's Jammed with Broken Heroes, a line which will resonate with Springsteen fans.
Jason was terribly sad about the prospect that he would never be able to make, or even listen, to music again. While most of what we wrote to each other will remain private, I don't think Jason would have minded my sharing something I wrote to him that he told me meant a lot to him.
That someone was moved by your music is a good thing. Always remember that... Many people go thru their entire lives without moving anyone else. So, even if you are unable to pursue music again (and I believe you will do so), consider yourself fortunate for having moved someone sometime in your life.
Unlike some patients who, for one reason or another, are unable to get out of the starting block, Jason was determined to improve his tolerance to sound. He committed himself to TRT, working with Dr. Jastreboff at Emory University in Georgia. When Dr. Jastreboff suggested that Jason work with the wearable generators for eight hours a day, Jason would push beyond that and use them for twelve hours. TRT did not change the fact that he was still extremely sound-sensitive. Dr. Jastreboff felt that this was due to Jason's other health challenges -- which may have been neurologically based.
Jason asked me if I would help him to get started using pink noise, and specifically asked if I would send him the filtered pink noise CDs I've been using for my own therapy. I agreed to help him because I thought there was a possibility if the broadband noise he used in TRT was too challenging for him to handle, it might explain why he hadn't improved. This was nothing more than a theory, of course, but we thought it was worth his exploring. Jason was game to try and committed to doing so for the long haul. He was to get started working with the pink noise I privately sent to his office late last year.
In the last year of his life, Jason had moved from Pennsylvania to New York City. He lived in an apartment in Harlem and worked in midtown Manhattan. There was a piece of good news. For the first time in six years, Jason and his physicians had found a combination of medicine he could take that made the pain he felt somewhat more tolerable. As he explained to me, without the medicine the pain was unbearable to him.
He loved movies, and was fond of placing semi-obscure quotes on the Hyperacusis board from an Antonioni film he loved, the filmmaker Robert Bresson, and First Blood . Jason was a brave man and his heart was in the right place; he desperately wanted to get better and was open to trying to do so.
He was extremely depressed, which was apparent when you heard the affectlessness in his speaking voice, and while an explanation for his death is something none of us can fully reach, I don't personally believe that it was hyperacusis -- or at least hyperacusis alone -- that caused him to decide he'd had enough. Jason had been struggling with depression for many years, even prior to getting hyperacusis, and he had other health challenges as well. I believe he was terrified at the prospect of being continually sick, and I'm sure that contributed to his depressed thinking and to his eventual final decision. Jason DiEmilio passed away on Halloween of last year. He was 36 years old. Jason was a fine man, and our thoughts are with his close friends and family.
Your Friend,
Rob
SandyTH
1114611201
Posted 1168731477
Reply with quote
#10
I didn't know Jason very well but could always feel his sadness. I am sorry this has happened to another member of our community. It makes it so difficult for all of us when we cannot reach out and save someone. I have been worried about him for a long time. Especially since he deleted all his posts.
Thank you Vinita for taking the time to come and tell us. I will keep you and his family in my thoughts. I cannot even imagine this kind of pain.
I like what Simon has said. There are many success stories here and I am one of them. It is important to hold onto that.
Darcy
1163881354
Posted 1168774276
Reply with quote
#11
In memory of Jason, who used to sign his postings:
DanMalcore
1114482085
Posted 1168789308
Reply with quote
#12
Thank you Rob. Children who grow up in funeral service often have a very different view of death. As we lived above the funeral home my little ones would often come downstairs, walk up to the casket and ask me one question...
Not how did they die...
Not how old are they...
They wanted to know what they did during their life, things they loved, things that were important to them. That's what they wanted to know the most.
Thank you for helping us with that.
Dan
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
marko
1116564066
Posted 1168805547
Reply with quote
#13
May his soul rest in Peace..........
Rob, I had a question for you since you knew him well.
It was mentioned he had Intense Facial Pain along with the Tinnitus & "Hyperacusis", which by defintion is sensitivity to sound.
Regarding the facial pain, was he ever diagnosed with Trigeminal Neuralgia or referred to a Neursurgeon for a workup? This is a condition caused when a blood vessel along the brainstem will sometimes form a loop, for a variety of reasons, and start compressing the 5th Cranial Nerve and cause extreme pain that often radiates down the face usually into the teeth and jaw.
When this presents, it's not uncommon for the person to also get Tinnitus & Hyperacusis because Cranial Nerves 5-10 are so close to each other where they exit/enter the brain stem. Often if the 5th Trigeminal Nerve is compressed by an offending vessel it's not unusual for the same blood vessel to push against th 7th cranial nerve (Facial) and cause facial twitching and/or the 10th (Vagus) nerve and cause Abdominal symptoms. If a large loop forms in the Vertebral/Basilar artery it can also press directly on the Medulla part of the brain stem itself causing whats called "Essential Hypertension", or high blood pressure.
Appreciate any input you have on this.
marko
1116564066
Posted 1168825062
Reply with quote
#14
Rob,
I asked the questions I did for a reason of course and was hoping you could possibly add to your description of some of the symptoms he was having.
If your friend was presenting with some or all of the symptoms I listed then others that visit this site could learn from this and hopefully get help. I think Jason did seem like the type of person that would want others suffering to find their way to a cure. There is such a thing as Neurovascular Compression Syndrome and a surgery for it called MVD (Microvascular Decompression) yet so few ever seem to find out about it or have it done.
Debilitating Tinnitus and Hypercusis can cause suffering beyond belief for some and can accompany or run with the compression of other nerves that create Trigeminal Neuralgia, Hemifacial Spasm, and Essental Hypertension.
Member deleted
Posted 1168829656
Reply with quote
#15
Jason and I exchanged several e-mails over the past couple of years, and I had the good fortune to meet him for an hour or so over coffee when he was in Atlanta a while back. Awfully nice fellow. Sincere. Caring. Bright. Instantly likable.
Very sad to learn of his passing.
sp
janepm
1124637549
Posted 1168835398
Reply with quote
#16
It just breaks my heart to know that Jason passed on. I am truly sorry that we have lost a very special member of our community, I remember him well and I hope that anything that I have said to him or about Hyperacusis did not in any way contribute to the depression that he was feeling.
To Monkeygirl and all who knew him, Stringplayer, Rob and others, I offer my most sincerest of sympathies. My prayers are with you all. He was a very talented person and I agree with Simon and SandyTH: this is a tough thing to get through, this Hyperacusis but please everyone, NEVER do something permanent for what for most of us have turned out to be a temporary problem.
I will say a very special prayer this evening for Jason and for his loved ones and this community of very special people.
jubags69
1115194663
Posted 1168852157
Reply with quote
#17
I am totally gutted... I cant say much more right now. My thoughts are with his family, friends and all he touched in his journey through life.
Ju.
kadida1
1138894593
Posted 1168871331
Reply with quote
#18
I can so much relate. I pray to God everynight to take me from this world to a place where there is no more suffering. I don't know how much more of this I can take.It has been Constant 24/7 torture for the past 2 years. I don't live I just exist. I cannot tolerate any type of activity as it intensifies my tinnitus, so I just wait daily until I can go back to sleep hoping I don't wake up.
janepm
1124637549
Posted 1168891902
Reply with quote
#19
Teresa: PLEASE do not take your life, you would be missing the best and I truly feel in my bones, to my very being that you have many wonderful and joyous years ahead!
My memory isn't working here, have you consulted those who can help you through this such as the TRT Program? I finally relented, a year ago this time, I was down and out and if it hadn't been with that program, I don't know where I would be.
Please know you are in my prayers and those of many many others in this lovely community.
JenMcK
1141270194
Posted 1168911218
Reply with quote
#20
Well I know exactly how Jason/Monkeyby felt (and Teresa feels) because I feel the same way right now. There have been times when I punched myself in the ears so hard because I thought I could break my eardrum and lose some of my hearing. I still try it sometimes. Obviously it hasn't worked yet because I can still hear and I'm still being tortured 24/7.
LynnMcLaren
1114745234
Posted 1168921226
Reply with quote
#21
Oh No, ((( Sad )))
I've not been on my computer this weekend and the first thread I
decide to read is this one..
I've just read everybodys post's and I'm so sadden by the lose of
Jason know as Tony to us on the board..
I remember reading all his posts and I know how hard he tried to get
well and it's just so sad he was suffering so much..
And he did seem depressed and all but I didn't expect this..
I was hopeing he could make it through. That he could hold on
till a cure was found for him...
As he had went through so much already..
But it just got to be to much for him...
He just couldn't do it....
My wish for everybody who suffers such as this is to try and hang on..
Anyway one can.. Thats my hope... Thats my wish..
I find this so sad.. I feel bad for Tony.. It must have been so hard for him..
I wish things could have been different.. I really do....
We all do... I'm sure he was deeply loved by all those that new him..
And he will be truely missed by all..
What a loss for this board....
It truely is a loss.... I'm so sorry..
Lynn
dylan
Moderator
1114974634
Posted 1168924271
Reply with quote
#22
Precautionary note: Rule 5
Posters must use caution on this subject matter.
dylan
Rob
1115044862
Posted 1168927420
Reply with quote
#23
Come on guys. Let's keep the focus on Jason in this thread.
jubags69
1115194663
Posted 1168939720
Reply with quote
#24
Well said Rob,
I have emails that Jason sent me, I hold these as very dear and I will never forget his kindness, warmth compassion and total lust for knowledge and understanding. I feel we exchanged messages of great importance to each other, as every bit of support no matter how small it is or how quiet and shy the individual is a help, I hope I helped him as he helped me.
I have also found out that he did like the things I said and my perception of pain relative to our conditions. I am proud to have crossed his path, honoured to call him a friend and I am sure ALL of our thoughts are with his family and friends right now.
I am more determined now than I have ever been to get even better. I, as Jason did, arm myself with knowledge, understanding, personal perceptions and his and others kind words guide me forward. T and H will not beat me. Pain is only relative to how you persieve it and deal with it, the loss of somebody as incredible as Jason hurts more than my ears ever have.
In everybody I am sure there is something you crave or love that gives you pleasure and hope, put all your energy into getting that bit of life back, not into worry and frustration anger and negativity.
Next dry day, the next time I skate, the moment I feel that rush and that pleasue. I will be thinking of Jason, honoring him in my way and that night I will raise a glass and wish his family and friends the strength, love and kindness to remember all of the good.
Ju(lian)
janepm
1124637549
Posted 1168997976
Reply with quote
#25
Ju: what a lovely thing to say and what a wonderful way to honor Jason.
Please folks, never give up finding a way to get well, Hyperacusis is tough and so is Tinnitus but it's something we can get over, or at the very least, something we can learn to find ways of living while we get better.
Hang in there everyone and never give up! I love you all!
Marcus
1115185607
Posted 1169083935
Reply with quote
#26
I can only echo the sentiments that were previously spoken.
shawns
1119161506
Posted 1169395990
Reply with quote
#27
Is there anyway to get a cd of his music?
stephenstreets
1154919163
Posted 1169792905
Reply with quote
#28
To all,http://phobos.serve.com/azusa_plane/?D=A ... here is a poignant image of Jason in the elements, some of you may not have seen it...he most certainly is the flame, the fire (internal & eternal)...his dear friend V. tells me he loved these white-rimmed shades...
bev
1158013488
Posted 1169853474
Reply with quote
#29
this is very sad news.
my prayers go out to his family & friends. so sorry for ur loss.
bev
1158013488
Posted 1170040798
Reply with quote
#30
tonight i wish everyone stength in their fight & to over come
I am in pain but my love over takes
my love of life ,the need i have within
to want more then what i have been given
more or less then some
but my unhappiest today
may turn around tomorrow
i wake anxious to see
disappointment may continue
but without my breath I'll never know
bev
1158013488
Posted 1170041834
Reply with quote
#31
so I stay & I pray
not just for myself but for everyone here
Che
1170125632
Posted 1170127056
Reply with quote
#32
Hi to ROB: I just wanted to say that your elegy to Jason was very moving and touching. What a tragedy!
bev
1158013488
Posted 1170129039
Reply with quote
#33
hi rob, i agree. thanks for sharing ur thoughts & letting us see jason through u eyes, it was very moving
jimfu
1163437230
Posted 1170152538
Reply with quote
#34
There's something I should have shared the other day about chronic pain. Don't do it alone. I go to a pain management group once a week now for three years like church. There is no doubt that this has saved my life. To share with compassionate others on a weekly basis my frustrations, fears and sometimes wonderful success stories has truly been a godsend to me and all other members who attend. If the group ever ceased to exist I know I would start or find another one. It's become that fundamental as a part of my coping skills in dealing with the never ending pain. So, please don't do it alone. Most hospitals will know of or even facilitate this kind of group therapy. As for the hyperacusis, tinnitus and vertigo, I'm optimistic that this message board is just what I need in helping me cope with symptoms that doctors have yet to properly diagnose and treat in any way. I thought I was alone with this HTV and that made it pretty scary. Thank you all for being here with all the good advice and understanding. God Bless You All.
Yasmin
1170908539
Posted 1172283735
Reply with quote
#35
Although I did not get the opportunity to know Jason, I am so very saddened to hear this sad news.
To his family and friends, I pray that God keeps you all strong and you find comfort in the beautiful and wonderful memories Jason bless you with.
"To live in the hearts we leave behind is not to die"