Many people have commended me for my openness about my experiences on this journey, but I really can’t take much credit, other than for writing things down and acting on the impulse to share (over-share?).
I can’t take credit because I am merely following in the huge, inimitable footsteps of one who unfortunately had to walk a similar path before me, and did it with such grace and wisdom as I can only hope to have.
Alicia Rose Parlette, as many of you know, was a dear dear friend of mine and the maid of honor in our wedding (she always signed every letter and email every after with “Your MOH”). She fought cancer for five years before passing away last year. I got my own diagnosis the day before the one year anniversary of her passing.
Throughout her journey, she wrote about her ups and downs, both in emails to friends and family, and also very publicly in the San Francisco Chronicle, with articles appearing prominently on the front page, and eventually being collected in a book. She wrote openly, brilliantly and insightfully about what it was like for her to go through the ordeals of doctor’s visits, treatments, bad news, etc. as a young adult and her honesty and openness inspired thousands of people across the Bay Area and the world. You can read her story at Alicia’s Story.
So it’s entirely, utterly because of her that I even have an idea of where to begin with sharing my story (not that I am half as eloquent as her, especially since she was an editor by trade and I just spill my thoughts in whatever haphazard way they come).
Aside from the model of sharing I have, Alicia has also given me another gift. For five years, I was in exactly the same position as those of you reading: watching a dear friend go through something terrible and feeling helpless to do anything. And like many of you, I was far away, unsure of what to say, and even less sure of what to do. I often felt paralyzed by my helplessness, and sometimes like I wasn’t really “good enough of a friend” to write or bother her. It was an awful feeling.
When I got the call that Alicia was sick, really sick, I didn’t have a second thought but to be with her, no matter the fact that we hadn’t spoken on the phone in many months or had had too much recent communication. I was on a plane before I knew what was happening, hours after finding out.
Once I got there, I realized something utterly invaluable that I hope will help all of you in your own journey: It doesn’t matter what you do, but every little thing can help, even in a small way. My experience in San Francisco with Alicia and the incredible group of “lionesses” I found there is not anything I can encapsulate in a single post, but suffice it to say, it was (up until now) the transformative experience of my life.
So now, one of my goals for this experience is to find ways to empower those I love to feel like there is something they can do to help, even in a small way, and to take away some of that terrible helplessness.
Maybe one way I do this is through recognizing and validating the fear or nervousness some of you might feel about reaching out by email, etc. Please know that even just writing “I’m thinking about you” makes a difference. I also remember feeling a little sad when I wouldn’t get a response back because Alicia was too busy or tired. Unfortunately, I don’t know if there is much I can do about that part, since I sadly don’t always have the time or energy (emotional or physical) to write back. But maybe I can at least try to write back a quick “thank you,” so you know that your message has been received and appreciated. Just don’t feel shortchanged if that’s all you get 🙂
Another way I would like to ease that paralysis is by creating and utilizing an organized list of different ways people can help, along with a contact person to coordinate offers and needs. The list has different kinds of needs/wants, including things that people who are far away can do to support us. Not everyone will feel comfortable with or be able to do everything on the list, but the hope is that most people who want to do something will see at least one thing they feel like they can do (emails count!).
So if you want to see the list of practical ways to help and “spirit lifters,” please email me for access to our fancy-pants spreadsheet (would you expect anything less of me? Although, again, I had a model in Alicia’s friends, who created something similar for her).
Also, I would like to remind those nearby who want to help that while we always love support, we will especially be needing LOTS of help once the little one comes, so keep that in mind when offering help. We don’t want to wear out your goodwill before we REALLY need it!
Although I know everyone is processing this experience and our relationship in a different way, I hope that this discussion of my past experience, my model of Alicia and her bravery, and the list of ways to help are helpful to you in some small way.