There is so much to do but so little time in life. And sometimes, even with time, there is no opportunity.
I was reading about Mogul Using $100M in Race to Cure Daughter this morning and it reminded me of how little care the world gave to rare ailments.
What struck me most significantly was the statement of “while the gene causing the ailment had recently been discovered, nobody in the drug industry was doing much about it”. Do you wonder, how much more is discovered, known but uncared for in the world? I do not imagine that the world is free and altruistic, but it half-amuses me how the world can be so cold and uncaring. It resonates louder than ever that money speaks: if a drug could bring in huge profits because more people suffered from the ailment, there would be a cure.
It brings fear to mankind, it brings uncertainty, and it definitely brings anger to me. This is not confined to the case reported.
This guy can help his child & many others suffering from SMA because he has financial capabilities – what about others who are incapable of expediting the research process for other diseases? Again, I do not claim to be able to (i) provide financially for anyone, (ii) selflessly commit to the betterment of mankind, and hence half the world would tell me to stop complaining. But it is disheartening, definitely, to know that there is so much sadness in the world that we cannot do much about. Not because we are unwilling to help, but really there is so little we can do.
I guess it has been a tough week and a memory-surge of the past does not help. I was watching a documentary last night about polar bears. How one Mother Bear with a cub struggled to survive on a rocky island, scouring the area for grass in all desperation and consuming remains of a whale’s bone for calcium in order to feed the dear baby, fighting off nasty male bears that threaten their safety etc. And another Mother Bear with 2 cubs, had better lucky with an iceberg that brought them to the snowy landscape they needed to survive, with a good supply of seals as prey. This single little bear was almost half the size of the two other babies, having been starved for the past 4 months! What a sight, a sad unfortunate sight. I’m not sure if this story makes any sense to anyone, but I think it brought me to tears looking at how the Mother Bear with a single cub had to hunt precariously to produce milk to keep her baby alive, how she had to weigh the risks of fighting a pod of walruses against losing her life and leaving the poor little fella in the wild. Maybe, even resorting to consuming grass and chewing off the whale bone, definitely a disheartening sight. Life is tough out there, and the little one was much of a liability. It somehow got me thinking if I had been like that. Was there a time when I was a liability that could have hindered some form of progress? As the unknowing bear cub duo chased after their mother as she hunted, it scared away some good prey. Did I ever make the same silly mistakes in the past?
Worse than the above – there is no longer a chance to remedy the wrongdoings today.
It really seems like a disjointed thought-regurgitation here so kindly forgive me. It’s a general feeling of dejection about how things have gone south. Illnesses that appear so simple, but due to a lack of sufferers, we will not get a cure. How counter-intuitive must this get? Then it all comes in a landslide – we lose the ones we love, we wonder if we could have done better, we wonder if things could change. We might wish, as often, “one little bit of change at a time”. But it doesn’t always work that way. And for the 101% of the time, it does not for me.
I guess this is more a realisation process that came too late for me, so to all who may chance upon this, don’t live to regret something you might be able to do right sooner.