A 62 year old friend of mine affected with retinitis pigmentosa asked me recently whether she was too old to hope for an improvement in vision in her lifetime. She has many friends who would rather focus on coping with their vision loss than spend time trying to engage in or follow research that they believe will not come in time to help them.
It is a reasonable question because it takes courage to hope for something like this. Hope makes one vulnerable to disappointment. People with RP who are 62 have often been through several cycles of fear, hope and disappointment in their lives and it is understandable that some of them would want to avoid being let down again. Having said that, if people who are actually affected with these diseases aren’t interested in helping pursue cures, who will be? Fortunately, it is in many people’s nature to fight back against a threat and to try to prevent or reverse injury to others even when they might not be able to prevent or reverse the injury to themselves.
There is a parallel type of thinking in the minds of some eye doctors who tell their RP patients that “there is nothing you can do” and/or “you will go blind so you should start making preparations for this eventuality”. I have often wondered why a doctor would say this to a patient when it is in many cases not factually true and when it is almost invariably hurtful. I have decided that these doctors are actually kidding themselves that they are being “honest” with the patient and telling them “the truth” when in fact they are mostly just refusing to share the responsibility of finding some help for them. “What if I say something hopeful to them and it doesn’t pan out? What if they call me all the time and express frustration that the hopeful thing I told them hasn’t happened yet? What if they want me to try to arrange genetic testing for them or a referral to a genetic specialist? Who is going to pay for all of this? I don’t have time for that. No, better not get engaged. Just tell them the bad news and be done with it. They actually don’t even need to come back to see me again.”
Fortunately, some doctors and scientists are drawn to currently untreatable diseases and aspire to devise treatments even when the biological, economic and political forces seem fairly strongly aligned against it. It is in their nature to try to help, even at some peril to themselves and their families.
It takes courage to hope and courage to help. It is the combination of these courageous, optimistic, generous and resilient people – patients, family members, doctors and scientists – that will ultimately banish these diseases from the world.
– Edwin M. Stone