Maya and Rahul

One of our closest friends from college, Maya, lives in San Francisco and is married to another dear friend, Rahul. Maya met Rahul just as she was finishing up medical school in Boston. She fell in love with this gregarious, brilliant, and talented man who could match her wit and dedication, balance her solemnity with his lightness. They got married in a days-long ceremony in the sweltering heat of South India, surrounded by family and friends. They spent time apart, dutifully going wherever residencies and fellowships would take them, knowing that on the other side of these long years would be a life together. They moved to San Francisco, newly appointed as faculty at UCSF, to pursue their passions and raise their children. Maya is an internist whose research improves health care for the homeless. Rahul is a neuroradiologist whose lab focuses on neurodegenerative diseases, including Amyotrophic Lateral Sclerosis.

In early 2017, Rahul was diagnosed with ALS at the age of 38- the very disease that he had spent years studying.

ALS is a relentless, degenerative illness. While Rahul’s mind is completely intact and racing to continue his work to identify the causes of this disease, his strength has steadily declined to the point that he is essentially paralyzed. Rahul can barely move his head and thumb. Despite this, he’s able to communicate using a mouse that’s strapped to his forehead that moves a cursor around an on-screen keyboard with the slightest adjustment of his head. Increasingly, the time and effort to do this- to have a conversation, write a paper, analyze data- is laborious. Moving from his chair at the dining table to his wheelchair requires two people to mobilize him; moving him from his wheelchair to his bed requires two people and a Hoyer lift; eating requires someone feeding him carefully while supporting his head so he doesn’t aspirate. Every basic act we take for granted – speaking, laughing, eating, breathing- reveals its complexity. 

As devastating and ruthless as ALS has been, Maya has been equally relentless in her sheer determination and effort to create a home full of love, compassion, and normalcy. She cares for Rahul, raises their sons, and continues to work full time on her research. Maya coordinates an intricate and tightly woven network of caregivers, friends, and family to enable her children to thrive and Rahul to be productive and engaged despite the isolation of this illness. She has repeatedly expressed how fortunate they are, to have colleagues that have supported their changing needs and to have the wherewithal to navigate the complexities of the health care system and social services necessary to make a home accessible and safe.

Despite her grace and grit, the costs are crushing. Maya is essentially operating as a single parent. The expenses of childcare for two young kids, daily caregivers for Rahul, mounting healthcare bills, a mortgage in San Francisco, and more are overwhelming. Funds donated would also help go towards restructure of the bathroom to make it easier for caregivers to bathe Rahul and a van that is wheelchair accessible so that Rahul can go out more.

We, the friends who know and love this incredible friend, mother, wife and academic, want to help. Will you? 


Related links:

4.28.19-Op/Ed by Rahul in the Washington Post: 
https://www.washingtonpost.com/national/health-science/i-want-out-of-this-body-i-cant-move-talk-or-breathe-on-my-own-but-im-still-in-there-thinking-remembering-my-old-life/2019/04/26/75836ff0-57b9-11e9-9136-f8e636f1f6df_story.html?fbclid=IwAR1FTkVCin22FjK6-XCGv_RliT9-U0LUVSXCrRfITV28W7OrmnZriFtjPSE&utm_term=.672ab9439510 

3.2.19- Op/Ed by Rahul in the Washington Post:
https://www.washingtonpost.com/national/health-science/im-a-scientist-studying-brain-illnesses-now-im-a-lock-in-living-with-one-of-them-lou-gehrigs-disease/2019/03/01/32a31100-3625-11e9-af5b-b51b7ff322e9_story.html?noredirect=on&utm_term=.2a4196c499f5 

3.1.19- Op/Ed by Rahul in the San Francisco Chronicle:
https://www.sfchronicle.com/opinion/article/Genetic-research-may-hold-promise-for-ALS-13654068.php?utm_campaign=CMS%20Sharing%20Tools%20(Premium

Maya and Rahul's interview with Good Morning America and ABC News:
https://abcnews.go.com/GMA/Wellness/video/als-researcher-living-disease-fighting-cure-59371888 

A beautiful article about their lives in the BU alumni magazine by Sara Rimer:
http://www.bu.edu/bostonia/rahul-desikan-als-research/ 

Washington Post article on Maya and Rahul:
https://www.washingtonpost.com/news/national/wp/2018/06/13/feature/devastated-by-als-trying-to-save-others/?noredirect=on 

Rahul's ALS page:
https://alsadotorg.wordpress.com/2018/08/10/als-researcher-living-with-als-continues-to-work-toward-a-cure/ 

Rahul's Research page:
https://precisionneuro-radiology.ucsf.edu/