I just read your 2019 Professor Hawking Fellowship lecture delivered in Cambridge. I am grateful that you have taken up global health as focus for your philanthropy. My background is public (international) health, so I understood every bit of your concern.
I was born in the Philippines when it was still a developing nation. In 1976, after graduation from Nursing, I joined the faculty of the UP Institute of Health Sciences. At that time, it was creating the state of the art curriculum for health manpower development. The premise was if education was appropriate for practice in the rural areas, then doctors, nurses, and other health personnel would stay in these areas where there was most need. We were in the race to meet the World Health Organization goal of “Health for all in the year 2000.” Those were exhilarating times.
After 6 years teaching at the UPIHS, I got married to a University of Hawaii professor. Britt’s and my dream was to work in public health research – he, to provide the sociological analysis, and I, the health perspective. However, two years after our marriage, he developed ALS – the same disease as Steve Hawking. As people with ALS (pALS), Steve and Britt were both lucky men – their careers didn’t require much use of their limbs or even their bodies, only their brilliant minds and a way to communicate their ideas. My husband was even luckier than Steve – he had me, an RN, as his wife and we stayed together. I took care of him for 31 of the 33 years we were married. Life forced me to shrink my global focus: I had to bring it to the level of one man’s health, survival, and well-being.
When Britt passed away in 2015, my experience with fulltime caregiving for three decades, gave me an acute sense of what families go through to secure the continued presence of their loved ones – to allow them to have a dignified, productive, much appreciated life in a setting that provided for the specialized care they needed.
How can I not continue to press this matter onto the hands of those who can help?
I am the president of the ALS Foundation of Hawaii, a non-profit that seeks to provide long-term care in an ALS Residence for people with ALS (pALS) who are not as lucky as Britt and Steve were, and can’t be cared for at home. Our secondary mission is to provide short-term care to pALS so their family caregivers can have a break.
ALS is a rare disease affecting at most 2/100,000. From a global perspective, any expenditure towards that small group could be seen as a waste of resources.
But think: would we have a Steve Hawking for the time we had him, were he denied the resources to continue living? Would Britt have lived that long and PRODUCTIVELY, had we divorced? I knew what I had to give up: my body (and my own dreams) so that my hands could be used to wipe his bottom, scratch his nose, drive him to work, order his tracheostomy supplies, argue with insurance offices so he can have the home equipment WE needed at home to make caregiving less tiring?
I have always been a global (or at least, a community-based) thinker. But my experience of 33 years married to a person with a chronic, degenerative disease, brought my thinking around to focus on those who suffer the same experience.
We, in our Board, have reached out to our community for help with this mission. One rich man has said to me many times: “You only have to talk to 3 rich men, to get this project done.”
So here I am, reaching out to you, on behalf of the approximately 65 people with ALS in our tiny state of Hawaii. In a graph, their number will not even pass the x axis. Our number is almost nothing compared to the millions of cancer patients, heart patients in the US; or let’s go global: the millions of malnourished children, millions who suffer from diarrhea daily, millions of women who get pregnant because contraceptives are either forbidden or inaccessible.
But we, the families of pALS – few as we are – matter, too.
Thank you for reading. I wish you every success in your campaign for global health and congratulations for receiving the Professor Hawking Fellowship Award.