I know I have the reputation of being positive. I am a “glass half full” person by nature and I can usually find the bright side of any dark situation, but I do cry.

I cry a lot.

I cry while watching sappy TV shows and movies. I cry when I see my kids hold hands as they walk down the street. I cry when the energy shifts in my office as my clients make a breakthrough. I cry as I fall asleep because it’s the only time I really allow myself to think about how much I miss people that I’ve lost. And, without fail, I cry every time I’m on an ALD Connect Community Call.

I’ve been a huge fan of ALD Connect for many years. I’m grateful for them for helping to guide our family into the ALD Community and for helping us make sense of our disease. I know it sounds strange, but I also give them credit for leading me to the work that I’m now doing. For years, ALD Connect has trusted me to speak at conferences and participate in workshops and facilitate community calls. My dear friend and founding board member, Kathleen, even wrote one of my recommendation letters for graduate school. She believed in me before I believed in me.

Once I graduated, and got some fancy letters after my name, ALD Connect asked if I could help with a new mental health initiative (being supported by bluebird bio). One of the additions to the pile of programs they have added is a monthly Mental Health Community Call. They asked if I would facilitate the call and I gladly accepted. To date we’ve had topics like The Impact of ALD on Romantic Relationships, Navigating Uncomfortable Feelings, Asking for Help, and Letting Go of the What Ifs. I always try to approach these calls as a professional, but whenever I log on and see my computer screen full of ALD patients, parents, and spouses I seem to forget about my qualifications and become one of them.

I share with them and laugh with them and I cry with them.

This month’s topic is Anticipatory Grief. The emotions associated to anticipatory grief occur as we prepare for an impending loss – not always death, but any loss. — even the loss of what you thought life would be. THAT HITS HOME FOR ME. Anticipatory grief can be experienced by people facing their own death/loss and by those around them – often simultaneously.

Emotions people face with anticipatory grief are anxiety, loneliness, fear, anger, isolation, guilt – YES, YES, YES, YES, YES, YES!

As I prepare for this call, I’m busy working on a worksheet to share with the participants as well as a long list of coping strategies. I will prepare. I will have a plan. But, I know that when we all log in to the call, I will likely throw my plan (at least part of it) out the window and allow the group to take the lead — to vent and share as we all lean on each other.

And we will cry.

I don’t want to scare anyone from registering for this call. There will be tears and raw honesty that may be difficult to hear BUT there will also be laughter and great ideas of how to move forward. And there will be relief. Relief that we are not alone in our emotions – in our grief.

So, I welcome all you ALD folks to join us on March 28^th at 7 pm. Register, have your tissues handy, and I apologize in advance if I cry . . . when I cry.

I cry a lot.

Love, Jess