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Author Topic: In Memoriam : Ashish, my comrade, my kindred spirit.  (Read 56636 times)
Isis
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Ash and me


« on: January 17, 2008, 03:03:00 AM »

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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Andy Battaglia
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« Reply #1 on: January 17, 2008, 03:41:35 AM »

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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« Reply #2 on: January 17, 2008, 04:40:02 AM »

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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« Reply #3 on: January 17, 2008, 06:01:41 AM »

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

May his soul rest in peace
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« Reply #4 on: January 17, 2008, 07:17:23 AM »




      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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« Reply #5 on: January 17, 2008, 10:14:59 AM »

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.   

My sincere condolences goes out to his family, as well as Shilpa, Andy, and others who were close to him.   

 
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Andy Battaglia
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« Reply #6 on: January 17, 2008, 11:00:00 AM »

Ashish Vazirani





Pioneer. Trailblazer. Friend to us all.
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Andy Battaglia
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« Reply #7 on: January 17, 2008, 11:44:22 AM »

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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« Reply #8 on: January 17, 2008, 12:36:19 PM »

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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« Reply #9 on: January 17, 2008, 02:01:38 PM »

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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Andy Battaglia
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« Reply #10 on: January 17, 2008, 02:07:26 PM »

I had the same thought when I read that yesterday and showed Shilpa this.

Quote
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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Andy

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Kathy11
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« Reply #11 on: January 17, 2008, 04:06:52 PM »

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,
Kathy
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« Reply #12 on: January 17, 2008, 04:16:59 PM »

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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« Reply #13 on: January 17, 2008, 06:19:34 PM »

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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« Reply #14 on: January 18, 2008, 10:19:23 AM »

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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