to my dearest family, extended family, mentors, teachers, collaborators, colleagues and friends, (the best working relationships blur all of these labels, for i think everything should be a bi-directional, compassionate exchange and conversation to figure out how we see the world similarly and dissimilarly),
i am so grateful for your support as well as the support and the warmth of the rhodes community, the MIT community, the punahou community, the global NSFC community and others who have joined me for parts of my journey along the way.
so, in a moment of extreme vulnerability, i ask you to think to yourselves: who do i love most in the world right now? pick up a phone and try calling them to say simply, i love you.
many of you know, i have been challenged with managing my mental wellbeing since 2010 at the time of finding out of my positive mutation test result for a deleterious mutation in CDH1. the details are not crucial here. what is crucial is that in times of great vulnerability and need, you at one point stepped up to come to my aid, or to teach me a lesson, which is mostly that first and foremost, i need to love myself and show compassion towards myself and others.
i have mostly managed the symptoms of my biology + environment by seeking professional guidance and behavioral practices. however, as we know from thermodynamics, the universe tends towards entropy, and sometimes (depending on how we delimit our frame) that is out of our control.
my process through this stage of transition and transience has been to:
1. come to terms with my grief over having lost my mother and come to terms with the grief over losing my disease-free medical identity
2. come to terms with having been hurt by not knowing where to seek appropriate support
3. come to terms with carrying now so many labels: scientist, engineer, fellowship winner, pianist, violinist, musicologist, depressed, manic, patient advocate. i have some personal qualms with labels (always consult the OED first!), which is maybe why i have been in denial sometimes about my own condition.
in the last couple of years, i have bought myself maybe another 40 years by having preventative surgery. it was the best decision of my life so far. it has led me to so many places. this past week was really about coming to terms with not only other peoples' mortality, but my own. i finally reached that point where i was so afraid of what was happening in my body, and there was no way i had enough information to know what was going on. in that moment of fear, i came to the point of recognizing that yes, i will pass on someday, but i am not ready for that day yet. someday i will be (only via natural/out-of-my-control means). i find peace now in knowing that my mother was/is a beautiful person and that she had the people who love her the most around her in 1996. i find peace in knowing that when that day shall come, i too, will be without pain, without regret, and will be in the place i want to be and with the people i want around me (schedule and budget permitting).
the past week has been rather traumatizing. i wish we could all be a bit more honest with our vulnerabilities and fears. i spent the week having to convince people around me (mostly psychiatric medical folks) that this really is not a psych in-patient case. my case hx is too complicated, and first and foremost, we need to address what seems to be some changes to my digestion (at least iron deficiency anemia -- low fat absorption) and new neurological symptoms (light and sound sensitive migraines accompanied by weird random nerve pain up and down my spine and where i used to have repetitive stress injury from piano and bad posture -- i studied for orgo too much).
i don't know what medical tests will reveal next week. i am intentionally maintaining my sense of calm and only considering the next day or two.
this goes mostly without saying, but i just want to share because this is how i deal with strong affective experiences with things like: anger, grief, shame, vulnerability, guilt, regret. the best pieces of advice i have ever gotten are to first show compassion to yourself during a time of duress and hardship. second, show compassion to those around you.
here, i (mostly iterating something i think that is already understood) would like you to consider the way we all use labels. yes, i have been depressed. yes, i have been manic. however, for the time being, since we are still in the 'tuning' phase of my psychiatric care, i would like to first and foremost be identified with the label of 'CDH1 mutation carrier and post-prophylactic-total-
gastrectomy survivor'. that is how i identify myself as a patient.
given the insight i have into many strong affective experiences, i beseech that for your dealings with other individuals, you consider first how they identify themselves as an individual and then as a patient. i have way too many insights into what kinds of experiences may make individuals vulnerable. being vulnerable myself in the moment, i really cannot carry that right now. so, if i may say so, the patients always have a right to be heard. it is my duty as a patient advocate to ensure that the patient experience is voiced and heard and recognized by the medical community regardless of where they are in the world.
i am traumatized, that is the truth. however, i understand what people may do in times of fear, because i myself have been in similar times of fear. i have not always been the most understanding person, but i try with every ounce to be a non-judgmental person such that no one around me feels that they cannot be open with their vulnerabilities.
farewells for me are always too difficult. i prefer the hawaiian way of 'a hui hou': until we meet again.
my mantras in times of vulnerability and hardship:
kia kaha (maori, be strong hearted)
be beautiful (whatever that means to you)
aloha (hello, goodbye, love, compassion, peace, mercy)
namaste (i bow to the light in you, for you bow to the light in me)
with all my love and warm wishes,
Jennifer I Jiun Lai (Jenn)