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Ashish, my comrade, my kindred spirit, my first thalpal.
Ashish, my good friend, passed away peacefully,on December 19th.
We met as kids and he always made me laugh through times of tension; taking blood, doctors.
Even through the hard times when he had plenty to deal with himself, he cheered me immensely all along the way. Urging me on and helping me as he did everyone. To this day, even after we were no longer taking transfusion together from the past decade, he knew me only too well...sometimes much to his glee and my discomfort. This guy with the heart of gold was my friend. 'Am so proud to be your friend and be counted as your friend. One of my deepest sadnesses will be that I had to live to see you go, Ashish.'
Words will not express what I feel. I am,thus, writing from my favourite poet, Lord Alfred Tennyson, a tribute to my bestest thalpal ever.
From "IN MEMORIAM"
Grief Unspeakable.
I sometimes hold it half a sin
To put in words the grief I feel:
For words,like Nature, half reveal
And half conceal the Soul within.
But, for the unquiet heart and brain,
A use in measured language lies;
The sad mechanic exercise,
Like dull narcotics, numbing pain.
In words, like weeds, I'll wrap me o'er,
Like coarsest clothes against the cold;
But that large grief which these enfold
Is given in outline and no more.
. . . . .
I know that this was Life, - the track
Whereon with equal feet we fared;
And then, as now, the day prepared
The daily burden for the back.
But this it was that made me move,
As light as carrier-birds in air;
I loved the weight I had to bear
because it needed help of Love:
Nor could I weary, heart or limb,
When mighty Love would cleave in twain
The lading of a single pain,
And part it, giving half to him.
. . . . .
Whatever way my days decline,
I felt and feel, though left alone,
His being working in mine own,
The footsteps of his life in mine.
My pulses therefore beat again
For other friends that once I met;
Nor can it suit me to forget
The mighty hopes that make us men.
I knew your love, I count it crime
To mourn for any overmuch;
I, the divided half of such
A friendship that mastered Time;
Which masters time, indeed, and is
Eternal, separate from fears:
The all-assuming months and years
Can take no part away from this.
. . . . . . .
O days and hours, your work is this,
To hold me from my proper place,
A little while from his embrace,
For fuller gain of after-bliss:
That out of distance might ensue
Desire of nearness doubly sweet;
And unto meeting when we meet,
Delight a hundred-fold accrue.
. . . . . . .
The hills are shadows, and they flow
From form to form, and nothing stands;
They melt like mist, the solid lands,
Like clouds they shape themselves and go.
But in my spirit will I dwell,
And dream my dream, and hold it true;
for though my lips may breathe adieu,
I cannot think the word farewell.
___ Alfred Tennyson.
We'll miss you forever,
Shilpa.
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I have been in shock since you told me that our dear Ashish is gone. I can't stop crying. I will post later. Ashish Vazirani was a true friend. His presence will be missed by the entire thal world.
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Isis,
my deepest symapthy goes out to you. i have never read that poem before. what a truly beautiful piece of writing to show what a special friendship you two had.
vic
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Indeed this is a tragic news for all of us :(
Words cannot describe the feelings at a loss of such a close friend who was an active member of this site. This is my first time experience at this and I can't believe that I won't be seeing more of his valuable posts
:quiver May his soul rest in peace :sorrow
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:wah :wah :wah that's so sad! my condolence to all his family and friends, I might never known him personally tho but I'm so sad that another fellow thal patient has just passed away, especially an active member of this group............... I do know this, he will be remembered well...... May he rest in Peace.........
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I'm still in shock. I'm so sad that Ashish won't be with us anymore. :'(
His posts always made me laugh. He was such a wonderful person, and he will be missed dearly.
Rest in peace, Ashish. Your sweet face and kind spirit will always be remembered and held close to our hearts. :sadyup
My sincere condolences goes out to his family, as well as Shilpa, Andy, and others who were close to him. :hugfriend
:sorrow
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Ashish Vazirani
(http://i71.photobucket.com/albums/i126/comicsetc/Dubai%2006/Picture061.jpg)
Pioneer. Trailblazer. Friend to us all.
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In his own words.
Friday, September 1, 1995
My story
Introduction
I am the only son of my parents.
I was born with a genetic blood disorder known as Thalassaemia Major (TM). A person suffering from TM does not make enough haemoglobin or Red Blood Corpuscles (RBC’s). I have this because both my parents have half a defective gene for Thalassaemia, i.e. they are both Thalassaemia Minor. That does not mean they are sick or have an illness, except that they are slightly anaemic.
I was diagnosed as TM when I was 8 months old. In those days, no one knew anything about Thalassaemia. Even doctors knew very little, therefore it was very tough on my parents to face the facts of my condition and learn to cope with it. As it is with all Indians, my parents accepted it as their fate and perhaps it is a suffering caused by their own karma or a curse carried on from a previous life.
Treatment
My early childhood was just like that of every other child. Only my parents were somewhat overprotective. I grew up with TM without really knowing that I was seriously sick. As treatment for my illness, I was being given a blood transfusion once every six weeks.
Over the years, because I have grown and my body volume has increased, the transfusion regimen has reached a weekly frequency. This frequency is necessary because in our country we encounter many problems, such as non-availability of donor blood, quality and haemoglobin level of the blood, the restricted hours of the transfusion centre, etc. In the Government and NGO facilities, even a weekly frequency is often stretched to 12-13 days due to shortage of blood and other administrative hassles. I have no choice but to put up with all this because the expenses involved are affordable at about Rs. 150/- (US$ 3.5) per transfusion.
If I were to avail of the services offered by private blood banks or nursing homes, I would not only have to bring my own donor for blood, but also spend about Rs. 1500/- (US$ 35) per transfusion. This appears to be quite cheap compared to the expenses for similar services in the UK or USA. However, one must not lose sight of the fact that my father earns about Rs. 8000/- (US$ 225per month). If I receive four transfusions a month, the expenses would take away a large part of my dad’s earnings. My family can be included in the upper middle class income group. Consider what would be the plight of people belonging to middle and lower income groups.
Respectively taking all this blood transfusions leads to another problem i.e. from overload.
Due to biological reasons excess iron starts accumulating in the body and interferes with the functioning of the various organs in the body. To remove this excess iron, I started taking Desferal as early as 1977. Perhaps I was the first Thalassaemia in India to do so. Of course, the drug was not available locally and had to be imported. My father’s cousins and friends, whenever they travelled to London or Rome, used to bring a couple of boxes of Desferal with them. The first time I took one vial of Deferral in 5ml of distilled water is something I remember very well. Dr. Asha veer, a Haematologist, injected the whole syringe in one go into my bum. I could not sit straight for two days. She was a good doctor. Unfortunately, she expired due to cancer some years later. She was the type of doctor who was dedicated to her work and hence I think I should her in this write up.
After some years, we came to know that for Desferal to be effective it has to be administered subcutaneously and over 8-10 hours of slow infusion with the help of an electronic pump as small as a pencil box. My parents purchased this pump in 1982 for a princely sum of Rs. 8000/- (US$225) at a time when my dad was earning approximately Rs. 1500/- (US$35) per month. In 1982, Desferal became locally available. If I were to take the doctor’s recommended dosage it would cost me Rs. 20000/- (US$ 520) per month. After taking Desferal for seven years my serum ferritin level reached a figure of 8000, a level which ultimately took a toll on my heart and liver. Then in 1989 a wonderful thing happened which was the end of Desferal for me.
A new oral iron chelating drug called Deferiprone (Kelfer) came on the scene. I started with one capsule of 500mg per day, reaching up to a peak of 12 capsules per day, the highest dose ever given to anyone on the trial. After me, two others got a similar dose later. Regardless of the side effects of the new drug, about which I have heard, the pill definitely works for me. Today my dosage is 7 capsules per day and my serum ferritin level is 1400, the lowest ever it has been in my entire life and the biggest benefit of all is the freedom from daily injections.
After the trials were over, the pill was made commercially available in 1995. Until then, I was getting the pill free of cost, but now I have to buy it. The cost is quite cheap compared to Desferal. I spend about Rs. 3500 (US$ 100) per month. According to the procedure prescribed by the FDA, I have to get my CBC done every month and a serum ferritin every six months. This way my doctor keeps a tab on signs of any side effects. I have not touched Desferal since about 8 years now and my iron overload has only improved dramatically for the better, thanks to Deferiprone.
Deferiprone in India is available through CIPLA a pharmaceutical company who carried on the tests for long years and then introduced Kelfer in the market. I hope all Thalassemic’s out there read this and be assured that we have reached a stage where the treatment is not all that cumbersome or expensive.
With the quality of my life improving I have started to look up to other aspects. I keep in touch with latest developments in and for Thalassemia through International meets and participation in local parent-patient organisation
I thank you kindly for taking your precious time out for reading this.
Update Early 2000
Things are really looking up now, I am presently employed in the IT industry, coming out of recession, have just started saving some money finally. This is really a short update, I know I will add another paragraph to this page after all the above was written in 1998, its 2000 now. Wow I made it to the minllenium.
Update May 2002
30 years old, 8 years on desferal and 12 years on Kelfer wow!!
I need to really keep a diary for everyday I live, for sure its gonna make juicy reading. I thought millenium was big now I am targeting 2005 WOW thats like the future. I dont know whats in store but its the first time I am looking to the future instead of sulking on whats past. BTW how do you like my domain!
Posted by ThalGuy at 11:25 PM
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I am so shocked and sorry,words can not express,i pray for the parents who lost their only son,i am a parent myself, i can feel it,my condolences.
ZAINI.
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http://ashishvazirani.blogspot.com/
I just saw this online and thought that he was also trying to say goodbye.
May his soul rest in peace and his goodness cause the cure we all need.
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I had the same thought when I read that yesterday and showed Shilpa this.
Somehow since last year after my fracture things have accelerated very much, she has come to accept the fact that I wont be here for very long.
I have to call his mom. Her life has been all about Ashish for so many years.
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To Ashishs' Family, and friends my sincere condoleance .I'm sad and I dont know what to say at this time,
I hope you all have courage and strength to cope with our lost .for me its like losing a member of my family.I know he did the best he could.May his soul rest in peace, :sorrow :sorrow :sorrow
Kathy
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I always got the impression from his posts that everything is under control. He was sooo strong, confident and funny. He used to help many members by investigating for them without being asked things related to India like when he called Dr. Mathur and.....He was so active in many things related to thal.......He had a beautiful smile that makes you love him without knowing him ............what happened ,........i am deeply affected, he is the first thal friend that i lose. Andy whose name are we going to mention when we talk about Kelfer ..... no one, that's it . Ashish, you will be in my heart with your kind smile and i will always remember that you were a strong thal whom i was proud to know for such a short period of time..........
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Ashish's heart stopped. No warning. No prior illness. He may have had some inkling that week, as he was working on a thal news site and one week before he passed, he showed me the link and asked where it directed and it was to our site here. I didn't understand just then what that meant but now I wonder if he had some clue that something was wrong.
I wish we could get Poirot active again as he is also a veteran kelfer user, but I know with work and family, he is quite busy. I did speak to him on yahoo and he is very upset by the loss of his good buddy.
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I just spoke with Ashish's mom. He had not been sick but had a slight fever that day. Nothing to give any warning that anything was wrong. I gave my condolences and told her I will continue to carry on for him in this online world that he pioneered. Ashish told me two years ago that I was to inherit his site but after his fall and broken leg kept him out of work for some time, he had to close the site due to funding issues. I will do my best to keep his spirit alive here. One of the last things he did was to point the link to his current site to direct to our site. He knew this was the one place online where the only agenda was helping people, and had nothing to do with personal ambitions. Ashish, I will continue to strive to make this a better world for thals.
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I am shocked. Ashish was the first Thal(Major) whose story I read (on his thal website) and got comfort from his posts and feelign that - "Yes, Thals can live" (Note: - I had no idea what Thalassemia meant when I was reading his post and I had got some words like Thals only live in their teens). This is the same story Andy has posted in this post. Those posts made me think completely positive and I started following his posts and infact I had him as a hero in my thoughts. I did try to get in touch with him while I visited India, but somehow could not meet him. What he and Lisa have changed is: - They made the thal’s come closer (through the Internet) and understand that Life does NOT stop with their thal and that thals can fight it out with will and determination and enjoy life.
Thals, who are/were in their 30s did NOT get the treatment what today's newborns or toddlers are getting. They were left to the mercy of their doctor's trying to figure out what it is and mind you these are/were thals in countries where NOT much medical advancement was done (in 1970's and 1980's). Not only, did these thals guide the younger thals but they also got themselves Experimented (I really did NOT want to use this word but that is the reality) and I think today’s thals should be grateful for what Ashish has done for the thals around the world. Awareness was close to none, when they were born and Iron Chelation was Unknown. Desferal was unheard. Kelfer came in later and as Andy has mentioned Ashish was a Kelfer user since a long time
I also think the parents of Ashish were a huge impact on his life and I salute them. Always being asides with Ashish. Hats off to them and Ashish.
I know his soul will rest in peace as he has done what he could and what he leaves behind is a legacy, which as Andy has mentioned needs to be taken forward.
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I hope that Ashish parents can take consolation from the amount of patients that he has been able to reach and support. He will always be remembered for the way he could get through problems with a smile.
Narendra is right in saying that the younger people will not have most of the problems we all faced in our earlier years and to pioneers like Lisa and Ashish we will continue to keep you in our hearts. Please keep looking over us and lobbying for us in your new pain free and problem free universe.
May God continue to bless you.
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I am shocked. Ashish was one person whose name was frequently mentioned in the iron chelation corner.My sincere condolences to his family and friends. May his soul rest in peace.
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my sincere condolonces to ashish's family & close loved friends,
from all the posts i have read he was a special person,who was liked
by so many,and to hear of his passing makes me sad also,anytime i hear
of a thal person passing it touches a spot in my heart,sometimes life seems just
so unfair.I didnt know him personally,but i know his special memory will live on.
i just read also someone posted they liked reading ashish's posts in the iron chealtion
corner section what name did ashish go under as id like to read some of his posts.
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Ashish can be found by searching for Ash. Or see his profile at
http://www.thalassemiapatientsandfriends.com/index.php?action=profile;u=8
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Owen Mark - Child
Sleep peacefully now my child
I hope that you go away
To a place where your dreams can Play
Wipe all the tears from your eyes
There is a sky of blue
This is your time of truth
Like a bird high on the wind
May you fly away
Like a snowfall in the spring
May your cares melt away
Child, innocent child
Our hope lies inside, your starry eyes
My innocent child
Hero now that you are free
You have no need to fear
So go out and find your smile
Like a candle in the stream
May you float away
Like a feather on the breeze
May you blow away
Child, innocent child
Our hope lies inside, your starry eyes
My innocent child
Like a candle
Like a snowfall
Like a feather
Like a bird, fly away
Like a candle
Like a snowfall
Like a feather
Like a bird, fly away
Child, innocent child
My innocent child
Child, innocent child
Fly away
Child, innocent child
My innocent child
Fly away
Sleep peacefully now my child
I hope that you go away
To a place where your dreams can play
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In loving memory of my dear friend Ashish (Ash)
You left without a goodbye, you have broken so many hearts including mine. I am devasted. I will miss you, you will be missed so dearly but never forgotten. Our chats were so deep and i thank you for coming into my life. Please if you see my Stan tell him i miss him heaps and you both take care until we all meet again.
Miss you Ash, please take care and remember Australia loves you.
Love always Mama San (Miaki) xxx :wah :wah :wah :wah:sorrow
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Oh my goodness. This is so terribly tragic and sad. My heart goes out to his family and especially to his mother. As a mom to a Thal girl I cannot imagine her grief.
May he rest in peace...
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This came as a shocking news to me. I had met Ashish only once in my life which was during the Pune Conference and he was a very cheerful person. I think we all need to learn the things that he indirectly taught us with the way he lived his life! He had a lot of complications but never did he let others have a hint about the same and I think he has really gone through tough times in his life. The younger thal generation have a lot of better medical facilities and we can try and live life in a better way with treatments of the modern world and an attitude like Ashish towards life!!!
I hope God gives strength to his family and friends to come in terms with this bitter reality. I also pray for Shilpa, my friend, who was very good friends with Ashish. May god bless her with courage and strength!!!
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I am shocked, no words are coming to me!
Ashish was a true inspiration, his posts were really helpful. I was looking forward to meeting him in the Tahl conferene to be held in S'pore.
He has left a void in our lives.
I am sure God is looking after Ashish.
May his soul rest in peace.
Puja
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I am returning to this site after months of hibernation. Oh God! I can't believe that Ashish is no more. His life was always an inspiration to the rest of us. I still remember his website mozzybytes. He will be terribly missed :wah
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I'm very very shocked to hear this very very bad news !!!! I'll never forget Ashish! I met him in october 2007, when he was for business in Holland. I went specially for him to Amsterdam by train, to see him. He was waiting for me at the trainstation in Amsterdam. ( I live 150 km from Amsterdam) We walked together in the streets of Amsterdam and ate together in a restaurant. He gave me a present, he had bought in India. A bracelet and earrings. I will keep it forever..very big remembrance for me. It was quite pleasant to met him. He made a cheerful impression. He didn't look sick, so I didn't know that he was so ill. He had big plans to live in Holland, getting a good job. O my God, why didn't you make this dream true :( It is unbelievable that Asshis passed :( I'll never forget him. It was a very pleasant time, can't forget that!! My condoleances and best wishes to the family and all friends of Ashis. (Sorry for my bad english)
Rest in Peace, Ashis...
Elmas
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I am shocked to hear this sad news, All that time we were thinking that may be Ashish was busy and not coming to the board. My wife is very upset right now finding the news. Our first introduction to Ashish was through his web page, we read his story when we were frantically googling trying to find some comfort when our daughter was diagnosed.
He was a wonderful person and I enjoyed his sense of humor. We are in awe finding that he is no longer with us. Ashish last post in our memory was when he offered his help to investigate more on a new treatment in India.
Our condolences to his family and friend.
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My grief knows no words.
Live in Peace, Friend.
Poirot
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Andy,
I am so sorry for the loss of your friend earlier this year. I don't know how I missed this thread earlier. I also miss Ashish - he seemed to be doing so well! What could have happened? He seemed to be chelating and taking such good care of himself. Did he have any predisposition such as hepatitis that took his life early? His page was one of the first pages I read when I joined this site - he seemed like such a happy peaceful person. I am so sad for his family - there are no words.
:sorrow :sorrow :sorrow :sorrow
Sharmin
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Sharmin,
It was very sudden and unexpected. It was his heart. I don't know if it was iron but when I saw him in January, 2006 in Dubai, he was not chelating because his white cells had dropped. His ferritin was 7000 at that time. Months later he told me that the doctors knew he had hepatitis and they hadn't told him. He said that hepatitis was actually why his white cells were low. He did start on kelfer again, but who knows how much damage was done in the meantime?
One week before he passed, we talked about Singapore and plans we were making. I lost much desire to go when I learned of his passing. Our plans will never come to be and the thalassemia world will never be the same.
We were friends, corroborators and co-conspirators. Things will never be the same.
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Missing you........
Do not stand at my grave and weep.
I am not there.
I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on the snow.
I am the sunlight on ripened grain.
I am the autumn rain.
When you awake in the morning hush,
I am the swift uplifiting rush
of birds circling in flight
I am the stars that shine at night.
Do not stand on my grave and weep.
I am not there.
I do not sleep
Miaki ....
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Andy,
You have such a big heart - you carry not only your own worries but all of ours as well. I am so sad that you have lost your dear friend. When you are working so hard to help everyone to move forward and keep faith it must be so disheartening to lose someone as amazing and inspiring as Ashish.
Just remember all of the people who are doing better because of people like Lisa, Ashish and you - who keeps their memories alive and their work ongoing. My son, and countless others have promise of living a better life because of your advice. Lisa and Ashish would be so proud of you.
Sharmin
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Never forgotten, always remembered.
Especially on February 14th.... cupid's favourite baby, Ashish was born on Valentine's day.
and on December 19th.... he was off on his cosmic journey and never to be seen again.
Even, when we fought or had arguments or drove each other crazy, I always felt really alive when talking to Ashish... lol....................Gosh, I miss him so much.
We were supposed to make it to the landmark age of 40, somewhat like a pact. Well, now I make that lonely walk alone. :'( :-\
Just ain't the same without you ole pal. Miss you, Ashish, even those times you was driving me up a wall and chortling away at my getting all het up....lol Best memories ever !!
In Remembrance of Ashish, my friend.
Friendship is a happy thing.
It makes us laugh
It makes us sing
It makes us sad
It makes u cry
It makes us ask the reason why.
It makes us take.
It makes us give.
Above all else it makes us live.
Regards to everyone.
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Ashish,
You believed in me when I was starting out in this world and I don't think I would have had the confidence to succeed without your faith in me. Right from the start you saw all I wanted to do was help, and the Ashish stamp of credibility you gave me brought acceptance without having my motives questioned. Because Shilpa and you invited me to and hosted me in India, it set me on a path to take this group to the next level where we have become a true force on the international scene, without being beholden to any organization. This group owes a tremendous amount to you, my friend and brother. I miss you greatly.
Ashish, this song is so you. Thanks, Shilpa.
My way
And now, the end is near;
And so I face the final curtain.
My friend, Ill say it clear,
Ill state my case, of which Im certain.
Ive lived a life thats full.
Ive traveled each and evry highway;
And more, much more than this,
I did it my way.
Regrets, Ive had a few;
But then again, too few to mention.
I did what I had to do
And saw it through without exemption.
I planned each charted course;
Each careful step along the byway,
But more, much more than this,
I did it my way.
Yes, there were times, Im sure you knew
When I bit off more than I could chew.
But through it all, when there was doubt,
I ate it up and spit it out.
I faced it all and I stood tall;
And did it my way.
Ive loved, Ive laughed and cried.
Ive had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing.
To think I did all that;
And may I say - not in a shy way,
No, oh no not me,
I did it my way.
For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way!
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Ashish, i really miss your kind smile, may your soul rest in peace :pray
manal
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Ashish,
My respects to you dear friend. I wish that I had a chance to get to know you better. I thank you for all that you have done to contribute to this site. May your soul be in peace.
Sharmin
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(http://i297.photobucket.com/albums/mm220/ZAINY_2008/8c44a794.gif)
Zaini.
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Ashish,
i never met to him but i feel that he was nice guy ... MAY HIS SOUL REST IN PEACE ...
(http://aprilsbeachvolleyballblog.typepad.com/aprils_beach_volleyball_b/images/rest_in_peace.jpg)
Umair
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Dear Andy,
That song by Frank Sinatra is so apt You mentioned it long ago, all I did was remind you. Thanx for posting it. I think it would make anyone, who knew Ash, smile . :happyyes
Happy New year to everyone. :smiley
regards.
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Ashish,
Fellow bad boy of Mumbai,
I still can not believe you are gone. Still can not accept.
Forever in grief,
Poirot
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Poirot,
I am very sad for your loss. Ashish was indeed very special to many people and losing him has been very difficult. May his soul rest in peace.
Sharmin
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Thanks, Sharmin.
It has indeed been very difficult.
Poirot
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Ashish started his career in my office when he was undergoing the new drug trials at Cipla. He would come and practice DTP on our computers till we finally managed to get him his own computer. To see him grow and move from strength to strength was very satisfying. I still remember the pride when he got his first car from the money he made from doing the DTP and printing of some financial reports.
I also remember the day his mother did not tell him his reports were bad and he came to my office very angry with his mother. No amount of explanation (since his mother had told me in advance about his report) would assuage his anger. Finally when he realised that even I knew about his report he stormed out shouting "It's my life. How dare anyone conceal my report". Of course Ashish being Ashish he was back after two days to say that he had thought things over and that it really did not matter.
A very dear friend is gone. I had been trying on and off to locate him and contact him. Last night I was once again trying to locate him to ask him about the pump he used to strap onto his hand before he got the tablets from Cipla. What I found was this blog site instead. Imagine the shock, dismay and hope that it was not him. Till I saw the very blurred photo someone has posted. The pic was blurred but the smile was Ashish.
I would like to contact his mother in case anyone has the contact number. I would be very grateful to get her number.
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I should be able to find her number. I'll PM you when I do. I miss Ashish to this day. He was a great friend and collaborator.
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If you could email Ashish's mothers number at zkamdar@hotmail.com that would be great. Thanks
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I miss Ashish dearly too. I didn't talk to him, but he was one of a kind one.
Miss you brother and hope wherever you're, you are free of pain and all worries and looking over us with your beautiful smile.
-P.