On 11th February, 2014… 7 months, 11 days before, around 6 pm, while I was fast asleep, my mother walked hurriedly in my room and shouted, “Daddy (as I called my maamu) is no more. I jumped out of the bed in an utter state of shock and for two minutes, I didn’t realize what really happened. Truth always takes a little time to settle in, but some truths are so painful that it just takes forever… forever to realize that your family is less of another person now. And even after the days pass, the loss still feels fresh.
For months, life did not feel the same every time I would close my eyes to sleep… it no longer felt the same even when I woke up. I just realize how short lived it can be.
It’s never too easy to comprehend pain and loss. People you share your grief with, tell you, you shouldn’t think about it. But how you grieve and for how long do you grieve is your own choice. Because moving on and healing takes it’s own time in the scheme of life. Those who advice you may not have shared the same loss/circumstances/pain, so they can’t understand you. Even if they do, they may not agree with you.
While there’s still pain, deep inside, a person can only try to heal the heart and protect the sanity of their mind by covering it up with scar tissue, which may lessen the pain from time to time, but it will never really be gone.
I lost not only my uncle, but a fatherly figure. On 5th March, 2013, he was diagnosed with Creuztfelt – Jakob Disease (CJD : a disease that is incurable and happened in the case of my uncle for reasons unknown). In India, the disease is pretty much unheard of, primarily because the cases are under reported. Doctors who were treating my uncle did all the brain tests to make sure whether the case can really be made out for CJD or some other brain disease. Once it was sure to them, we were bluntly told, “He won’t make it.”
Once, the doctor had asked him who he was, he confidently said : ‘I’m Rajnish Ahluwalia, Director, Ministry of Defence.’ He was then asked to write his name and all he could draw was the first alphabet of his name ‘R’ and a cracked distorted line afterwards.
In the days that followed, he would pee as he lay on the hospital bed, he had trouble wearing the clothes, he would collapse while he was still inside the bathroom. His body would show jerky moments, sometimes in the hand, in the legs or in the mouth. He would often have pneumonia, his body would remain cold. His eyes started to remain glued to the roof. By this time, all his bodily functions had stopped. He wouldn’t speak, walk or move. He became a motionless body, who had to be turned or moved to clean him up, to make sure that liquid diet gets inside of him. A urine bag was attached to his body, a nasal pipe to keep oxygen flow go on, and a food tube to feed him. His eleven months battle was just as devastating. Doing all the research and study about this disease online, we knew that this day would come, but the real struggle was watching someone so close fade and extinguishing like a candle and this struggle is inexplicable.
The disease (as it is) is incurable, inoperable (even globally) and people even die within weeks. The precious some person is to us, the harder it is for us to accept that they might die. We even convince ourselves that there’s just no way they could die. But THEY DO!
Even if you kneel down in prayers or you don’t, it’ll happen. Prayers may look like a fool’s tool to agnostic atheists but prayers do miracle for the souls.That tiny amount of hope beating inside our chests held us strong enough to carry the weight of our broken hearts around. And even though, today, he is no longer present on the physical altar of life, sometimes, thoughts and memories come flooding back to the mind. How he was, what he did for us, his sadness, his failures, and how hard he worked to be what he was in life.
It’s so overwhelming that I, sometimes believe, that yes, life is unfair to the good people, and often the sweetest and gentlest of souls suffer most, even if they are free from the taints of sins.
Unlike many others, I don’t have too many pictures with him. We lived in different cities and for the time lived in the same ones, we would get to see each other on festivals. All I have is this one picture in the frame and memories that are in the back of my head.
The last memory I have of him is that when I went to meet my uncle, I couldn’t help, but embrace him and my tears just fell. I felt as if he could hear me sobbing, as there was a sudden moistness in his eyes… the water trickling down from the corner of his eyes. I thought that even thought his disease has rendered him motionless, the feelings were very much there as his body showed jerky movement. I believed it was out of the need to express emotions…but he was too helpless to respond. I asked my CJD family if they ever felt the same way. Here are their responses :
His death isn’t the ultimate thing why it pains so much. What followed in the wake of his death was far more devastating. When the last time he was admitted to the hospital, my aunt didn’t inform our family. In 3 days time, he passed and we were then informed.
When we reached uncle’s house, the silence screamed inside my mind. All the rites had to be performed the next morning, and I spent the entire night sitting beside his body, wrapped up in white sheet. It was hard to bear the fact that his entire body would turn to ashes in few hours. I sat there, I wept all night, I wanted to touch him but I couldn’t get the strength to do it.
It was appalling to see how my aunt (her family) and my cousin sister slept soundly that night, it seemed that in few hours, their tears had dried away. Next morning, they bathed, they lit the lamp in the temple, had their tea and snacks in the same room where my uncle’s body was kept. It was known to us that many a times they remain absent from the house while my uncle laid lifelessly.
There was a strangeness in the air that night, the next morning. There was new furniture in the house, the house seemed freshly painted. And the outrageous thing was to see my cousin’s cousin take a picture of my uncle’s dead body, few minutes before he had to be cremated.
He wasn’t given a proper service as well. As per Hindu traditions, we perform cremation by fire and wood. My uncle was a staunch believer of Hinduism and every man/woman deserves to be cremated as per the faiths they have followed for the time they lived. When the elders of the house tried to seek the explanation for resorting to the unconventional burial method, they avoided us for long and at the time of confrontation, it was told that such a method be resorted to, because the infection from CJD is airborne. (But, it was only after autopsy that the CJD virus can be infectious for those around) My uncle’s body was never given for autopsy.
Creating a scene at that spot wasn’t how we wanted things to be so let him be cremated using those electronic crematoriums. The loud noise of the machine echoed in our ears for the days to come, to see that his body was turned to ashes with a blink of an eye would haunt and blindside us at odd hours. My aunt and cousin were even seen giggling with a few relatives. I wonder how a person can be like that! Later that night, my mother discovered that my cousin had her engagement fixed in the month of May. Months later, they went to acquire the village property that my uncle had relinquished to acquire while he was living.
The heavens know the guilt of their hearts or what they conspired amongst themselves. Had they become tired of taking care of him, did they not want him anymore ? My entire family had this negative gut feeling and the kind of thoughts we were having, nobody really has in the moments of loss and death.
I just know NOW that he is at rest, wherever he is. He loved reading, was a Mr. Know-It-All. If you had to ask him 2 + 2, he would indulge in an in-depth conversation, making you fall in love with numbers. He just had so much thirst to learn in life and he was the only example in my entire family who defined success and excellence.
I know this is not the end, for we will be united one day. But while we can still think and dream of the ones we’ve lost, we know there will be some sort of peace that comes with it. Because in those dreams, we are together and it feels so real, like it is no less than a fresh memory. These serve as gentle reminders that even when we are separated in the physical, we are always together in the Spiritual. God sends us these reminders because he knows how desperately we need them. [I had to screenshot the dreams everyone shared with me.]
Sad to live with the truth that he had an unfinished business… Sadder it is to know that one day, your closest ties gets weary of taking care of you for too long… and saddest it is to live with the cold and dark memories of what followed his death.
My uncle fathered an adoptive daughter and for all the love, care and best of facilities he showered on her, he didn’t get what he deserve. My mother once told me my uncle’s words, he said : ‘That if you nurture a pet, you began to treat them as one of your own… Why can’t you do the same for a human who is not your flesh and blood.?’ But people are mean. Families can be broken. Sometimes, only your true blood is the only thing you can rely upon in life.
My heart would have suffered for long, had I not joined the CJD support group on Facebook. Because of them, I got my answers and came to terms with the loss. It was a place where strangers from across the globe were reunited in their struggles and tribulations against CJD. Together, we mourned each others’ loss, comforted each other with our words and soothed each others’ soul by our prayers. When I joined it, we were a family of 808 members. Many continue to lose their loved ones to this slow eater and our CJD family is growing. It is a sad bond we share but we are blessed that it has united us. We are here for each other! We will hold each other up!
I coped up only because of them and because I was coping up too soon, I considered myself guilty. But whatever pain the path may bring, one has to SMILE THROUGH THE TEARS.
This disease does not end when it takes our loved ones. We are left with the thoughts of how helpless we were to help them. Sometimes, it kind of makes you angry at life knowing that they didn’t wanna die…they were taken.
Last month, I read about a 28 year old boy, Ritchii Kara, with just 14 months of life promised to him, after being diagnosed with Variant Creutzfeldt-Jakob Disease. He says, “I think if you’re just going to sit about and be sad, what’s the point in going on anyway?” With all the awful and horrible things this disease puts your through, he is wasting no time in fulfilling dreams on his “bucket list”, including a holiday to Hong Kong and a trip to for a gay pride festival in Hamburg, Germany, where Danish singer Whigfield, famous for her 90s hit Saturday Night, performed a song he had written. He even is raising awareness about CJD.
For being so benevolent and doing all of this, he is going to heaven. I wish everyone affected with this incurable disease get a shot at the silver lining of life. I wish my uncle had it. He had planned so much way ahead of time.. that once he retires from the Ministry, he’d travel the world.
Oh, the unfinished lives.
If you would like to share a memory and a picture of your loved ones, I’d love to read it.