I have always drawn a clear line between my personal life and my professional life. I pride myself on being a “boundaried” therapist. I don’t typically disclose details of my personal life (e.g. whether or not I have kids) and I don’t insert my feelings or opinions into the room. I welcome questions of any nature, but rather than offer answers, I use those moments as opportunities to explore what may be coming up on behalf of the patient. I have always subscribed to the theory that the more patients know about their therapists, the less authentic they may be; they may be more likely to censor themselves out of fear of being judged or in an attempt to please the therapist or there may be other subconscious processes that could potentially contaminate the work.
Let everything happen to you
Beauty and terror
Just keep going
No feeling is final
–Rainer Maria Rilke
I’ve had some hard moments in these last few weeks. I’ve had to navigate some unexpectedly tricky terrain on middle school tours while trying to keep up with the rest of the pack. I’ve had to face the fact that I can no longer walk across the grassy area where all the families with young kids traditionally congregate after high holiday services. I had to stand up in front of all the parents at my younger son’s class social to talk about my role as the fundraising rep while simultaneously realizing that I was having trouble simply standing. And then I had to ask a mom whom I barely know to link arms with me to help get me up 4 stairs.
This weekend we had the honor and pleasure of attending my husband’s cousin Julie’s wedding in Washington D.C. Julie is one of those shiny bright sparks in the world. She is the definition of exuberance. (Don’t take my word for it, just ask one of her eight best friends/ bridesmaids.)
Not only were we excited to celebrate her marriage to the equally fabulous Justin, but we were thrilled to take the boys to D.C. for the first time, even if just for a few days. We were going to take in as many sites as possible and our dear friends were coming in from New York to spend a day with us.
Two weeks ago I attended the Neuromuscular Disease Foundation’s 4th annual patient symposium. Though I thought I’d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of meeting patients I had only ever corresponded with on Facebook, the painful realization that I am by far no longer the least progressed patient in the room and finally, the sobering news that the most promising treatment-gene therapy-will require a staggering 3.5 million dollars in funding.
I feel sad. I feel deflated. I feel disheartened. I feel angry. I feel betrayed. I feel frustrated. I feel helpless. I feel overwhelmed. I feel rage. I feel tired. I feel drained. I feel exhausted. I feel scared. I feel terrified. I feel desperate.
While innocently scrolling through Facebook during my older son’s High Holiday choir practice just minutes ago, I was ambushed by an article announcing that Ultragenyx Pharmaceutical is terminating the development of the drug ACE-ER because phase 3 clinical trials failed to demonstrate significant improvement in muscle strength. They’ve been at it for years. Ultragenyx’s mission is to develop drugs for rare and ultra-rare diseases.
I have been a feeler of feelings for as long as I can remember. When I was young, I used to write long, sentimental birthday and Mother’s and Father’s Day cards. My sister used to tease me (still does), about my overly expressive, touchy-feely “treatises.” On Thanksgiving, I was always the one (still am) to make people go around and share what they were thankful for in the past year. Or on Shabbat, what they were grateful for in the past week. I have about 15 diaries from my youth, sitting in my garage, all filled with pages and pages of feelings.
Summer used to be one of my favorite seasons. Not just because it is kicked off by my summer solstice birthday, but because there has (historically) always been a carefreeness built into my summers- wearing sundresses and flip-flops, frolicking around at the pool or beach, traveling on summer vacations (my personal favorite). Throw in hours of sunshine and long lazy summer nights and there’s not much to not love.