On my wife's 40th

I came across this quote on a friend's timeline a week or so ago and loved it so much. I decided to save it, to post it on Heather's birthday. Then I forgot I had it. But now I remembered. Anyway, this idea of letting go of the interpretation we had of our partner as they change resonates really hard for me. It's not just a funeral for who we thought they were, but also for future hopes we held that were predicated on who our partner used to be. Which all sounds like kind of a downer, but I don't feel that way. For me, love is demonstrated when put to the test. If everything is like a choreographed honeymoon in perpetuity there would be no chance to be stretched, to be forced to grow, to learn to be open to different paths and perspectives. It would be perpetual adolescence. I'd rather grow, as painful as the process may be.


When we met, Heather assumed that like herself, everyone was always in pain. Through the last 15 years as she underwent one awful medical ordeal after another she learned otherwise. She got diagnosed with EDS and has undergone a whole bunch of surgeries that attempt to make her body fall apart slower. The past year or so has been very difficult for her as her disability became more and more apparent, severely limiting the things she loves to do: Long walks, photography, and working. (She loved her job at Starbucks because she loves people.)


So dealing with the physical, logistical, financial and emotional repercussions of her rapid decline has been rough. So there’s been a lot of ‘funerals’ to attend to lately. But one beautiful thing this has brought about is a crystal clarity of what is at the core of her being; and that is to love others. To be there for them, to help them, to advocate for them. All the experience and knowledge she has gained navigating her health problems and the health system has made her an incredible asset to anyone who needs help with that stuff. She’s learned SO much about how to do GOOD research on medical issues, as opposed to naive googling, how to parse professional vs. colloquial wording in articles and white papers, how to spot the good and helpful doctors, and the red flags to look for, etc. She marshals all this into a passion for helping others to get through their medical difficulties.


Yesterday I took her and her friend to the state capitol where they were advocating for a bill that would reduce the chilling effect that the ‘opioid epidemic’ has caused for the treatment of patients with chronic pain. Heather doesn’t actually use any opioids, but through her network of friends in the rare disease community she can see the issues that an blind over-reaction has caused.

Because Heather is a magical creature, she instantly connects with people in a way I don’t understand at all. And because she loves taking pictures, she was photographing up some stairs when a woman was walking down them, and somehow that turned into a conversation between them. After talking for a bit we found out the woman was actually a representative, and we got to tell her why we were there.

All this to say, I’m so lucky to have married this woman and attended a thousand funerals of her past selves as we’ve learned how to find joy and love in an increasingly constricted life together. The perspective we’ve gained is invaluable. Happy 40th to My Love.