Why do bees farm honey? Why do ants dance in a social pub? Why did our social sciences book make us cram “Man is a social animal, he needs company to survive.”? (Man=Human Being in this context). Friends Of Max (FOM) addresses that basic “social” need – to culturally identify, group, share and grow (now you know where that logo comes from).
Friends of Max (FOM) is born out of a similar compulsion and “more”. Whats “more”?
- There is a social “slur” associated with both the health defects we work closely with (CML and GIST). One of our primary aims is to help affected individuals and their close circles deal with such situations better. Our aim is to convert “Oh My God, I have cancer”, to “Oh, I have cancer, that’s fine, it can impact my blood….but not my sense of happiness, my web of life, my circle of peace and my last dance.”
- We live in an age where “living is expensive, everything else is cheap”. Even with Novartis’ unique donation module GIPAP (Glivec International Patient Assistance Programme run by the Max Foundation) funding the medicines, most of us human beings impacted by CML/GIST would still have some sort of an economic impact on their daily life. This is because of the cost impact on the diet, associated medicines, travel and so on. Except for people who are really well off, the impact is real and will eventually shave off some part of the experience of life (like e.g. “I can’t put my kids through ABC school, because CML is making my budgets go awry”.) For others who come from really financially challenged backgrounds, many of them from the far flung interiors. it is a constant struggle to find resources for travel and periodic follow up visits and diagnostic procedures. FOM helps these patients with travel costs, investigation fees, food subsidy, and children education subsidy.
- Both CML and GIST are “multi-dimensional” defects, which mean, left to their own devices, person A who suffers from “skin rashes” as a side effect of the medicines, would probably never meet person B who had the same side effect. Side effects due to the medicine and the defect both are dime a dozen, and could literally fill up a 100 page book. “Side effects” is just an example, the same is true for symptoms, weaknesses, debility and so on.Since FOM has a roster of around 8000+ patients and associated family, its much easier to find “commonality”, which means we can reach out to someone who has had rashes or calcium deficiency, and find out how she/he dealt with it. This kind of learning is “socially captured” and is invaluable in the context of a relatively new medicine such as Glivec.
- Great civilizations were built on ruins of natural disasters. What distinguishes a “natural disaster” from an individual defect such as CML or GIST? An earthquake, wipes entire cities, delivers equivalent debility to your neighbor as it does to you. Human beings, the “social” animals that they are, quickly come together, so much so that entire cities start behaving as if they were a lumpen….Out of this lumpen rises re-organization and new life. So very quickly in our case, a single CML/GIST patient is a “personal tragedy”, but aggregate each one of them and them lump them together and you have your Sphinx. FOM tends and feeds this Sphinx, because it has the power to regenerate not only for individuals but entire societies.
- Any more “objectives” and this would read like the constitution of India. One last one though, if we had to sum up what we do quickly – “We work with people helping them realize that life is not always a perfect circle, if you have punctures in the circle wall, remember the next repair shop is always around. More importantly, (just like in real life flat tires), don’t philosophize, ‘Oh why am I the one having a puncture?’, and also don’t focus on the end state, ‘Is this puncture going to destroy my circle?’….It eventually will, all circles arise out of dust and go back to ashes.”