MERI Center Blog

My Hesitant Communication Tip

[I’ve been sharing monthly Communication Tips with my UCSF communities for more than two years now. But I’ve been a bit hesitant to share everything as I’ve tried to figure out my own work/life balance. The following is a personal reflection shared freely with my beloved UCSF work family. If you are interested, please accept this in the spirit in which it was written. But, for sure, this is not required reading!]

Dear Mount Zion Community,

It started 13 years ago with exercise-induced double vision and dizziness. I had a ton of alternate but easier to accept explanations (being out of shape, someone must have sat on my glasses). After 6 months, when my wild fear that I must have a brain tumor finally exceeded my reluctance to admit something was wrong, I went to my PCP, and got an MRI of my head.

When the results were back, I walked down the hall from my own clinic office to his. When it was time for him to break the bad news, he did a good job, following advice that would later appear in this very column… when delivering bad news, start with a warning shot. People need time to prepare.

“There was something on the scan.”

Multiple Sclerosis.

For a half-second, I was relieved it wasn’t cancer (how strong the stigma of cancer is!). Then, I was in disbelief. How is it possible for there to be something really wrong with me? And alone. How come I didn’t think to bring my wife Barb with me to this appointment?

In a daze, with my mind swirling, I finished the rest of that workday (and then all the days since then) with a secret illness myself as I went about caring for others as their doc.

I told Barb that night. My school-age kids a few weeks later when I could talk about it without crying. I tried not to, but cried when I eventually told my parents.

And then, over the subsequent 13 years, I have carefully doled out my secret to just a select few. My 2 sisters. A few of my oldest friends. The people I went backpacking with (I needed them to know in order to help keep me from falling off the mountain).

For 13 years, I was intent to pass as “fine,” especially at work. You cannot see MS in the academic papers I write. I can empty my APEX inbox without tripping or falling. In the first years and mostly still, you aren’t likely to see MS when I lecture medical students or walk into a clinic room.

Over the years, though, my disability slowly grew, making it increasingly hard to deny… but not hard enough yet. Zoom makes it pretty easy for me to hide.

Espousing obvious truths, from the beginning, Barb was remarkably patient but encouraged me to be open and honest (“your friends will respect your sharing, they won’t think less of you, my god, everyone you know is in healthcare, is in palliative care, if you knew someone was sick, you’d want them to be open and you’d have nothing but compassion for them, etc, etc…”)

But it still served me to pretend, to pass, to deny….
Until, of course, it didn’t.

At some point during the pandemic, out walking with my dog Zambi, alone with my body and a slight limp, I realized I felt scared and ashamed. I had internalized bias (ableism). I hated myself and my body for being ill. Dependency was an affront to the story on which I had been trying to insist. Mostly, I was ashamed of being disabled (despite everything I had ever thought consciously or said out loud or taught to others).

Finally, things have begun to change. Now, I meditate and journal and am trying to integrate and be whole. I am feeling new love for my old body. I meet every other week with someone great from FSAP ( to learn how to notice what’s true and then choose how to act, to question some of my oldest thoughts and beliefs, and to work on tying my self-esteem to something even more essential and less ephemeral than the human body and its functions. After years of doing and performing (and being rewarded for that), I am trying just to be.

A few weeks ago, out hiking with my 21-year old daughter, Maya, near her new home in Boulder, CO, I pulled out my walking sticks to get down the steep, rocky path, and realized I owed her an apology. When I became a parent in 2000, I had promised myself that I would not do what my parents did to us kids growing up (insist we pretend in order to support their vision of themselves, follow the script that “everything was always fine with the Rabow family”). But, for the last 13 years, I had done the very same thing to my own kids-- asked them to keep my secret, not to tell their friends, not to really talk about MS. Good kids both, they helped me hold together the separate parts of my life.

On the mountain, Maya gracefully accepted my apology, and then said the wisest and most hopeful thing I’ve heard about generations. “It’s ok. You did better than Nama and Pappa. And Emerson [her brother] and I will do better than you.”

A few months ago, the Paul Kalanithi Writing Award announced it was seeking submissions for their 2021 contest. Winning entries would be published. After hiking down to the beach in Bodega Bay last April with Barb, I had written a private poem about my MS and how I struggle to integrate disability and illness into my life. Seemed like Dr. K would have appreciated it.

So I struck a strange, little bargain with myself. I’ll submit my poem and if it wins (and gets published), then I’ll “come out” publicly as disabled. If I win, that will be the time (a sign? a push?) for me to break my silence, stop my pretending, and bring my heart and soul some healing.

Strange luck… I won. My poem is now out in the world for anyone interested to see on the contest website (and copied below). I know it won’t be as big a deal for you to read as it is for me to share… but I guess that’s kind of the point.

Today, I apologize to my work friends and colleagues (UCSF has been my family since 1989 when I first came here for medical school) for my taking so long to be open and honest. I apologize to some dear friends and loved ones who are learning this about me now via email rather than me telling you in-person years ago.

Denial worked well and I needed it for a good, long while to give me time to grieve my losses and to stop believing everything I think. But it no longer serves me and the cost of inauthenticity has become too steep, even for me.

So, finally, to this month’s communication tip: Say what’s true for you, when you are ready.

With gratitude,

Sliding Down

Bodega Bay
April 6, 2021

Every parent knows the question,
A suggestion, really, Asked and offered with nothing but love--
No challenge to independence
Or skill or bravery.

Do you want to
Slide down on your butt?
Just the hard part
Just the steepest part
With the eroded soil
And the rotted wooden planks.

Here was my beautiful wife Asking me
A grown man
Her man
With whom she’ll stick,
No matter what,
Even after the MS progresses further
And I cannot even slide anymore.

Bristling a little with the question,
I wondered privately
How will I get down?
And do I really deserve
such a sweet woman
Caring if I do?