Tomorrow is Rare Disease Day and among the many (many) awareness days throughout the year, this has always been one of my favorites. This week I was reminded why: the rare disease community includes some of the most dedicated, supportive and hardest working hustlers you will EVER meet. From patients to caregivers to clinicians- alone we are rare but together we are strong AF.
So, I’m freaking out. It snuck up on me, I’m really talented at living in a place of denial. I make a home there with decorative pillows, throws and cozy rugs. Then that cozy rug is pulled out from under me and I’m forced to face the truth.
This week I started to see reminders in my inbox and social media feeds that International Epilepsy Awareness Day was just around the corner, February 10th. I felt overwhelmed by the need to do something and underwhelmed by my desire to advocate. An Eeyore cloud settled over me and then, for the first time since Adelaide died, I felt anger. I’ve been waiting, even wanting the anger to surface. Then, there it was, grinning back at me like Jack Nicholson in The Shining. All purpose, no BS.
I am very slowly learning that grief requires A LOT of active work to process. Time alone does not heal wounds this big, you have to want to heal. So, this week I decided to push myself. The grief will never leave me but I can choose to change my mindset around it. Today I’m reflecting on one happy memory and how it procured one of the many gifts Adelaide gave us in her life: perspective. Will this help me move through this grief limbo? Who the heck knows, but it’s worth a shot.
Last night a friend asked me where I was in the grieving process. I explained that I had moved past the debilitating phase where getting out of bed is a struggle and slothing is a legitimate activity, but I still wasn’t me. I’ve taken up residence in some sort of grief limbo: going through the essential motions of life, committing to what is absolutely needed of me but fighting to go further. In this post get ready for an honest and slightly rambling look inside my mind over three months into this new normal.
As I reemerge from social hibernation I am taking the tactic of dipping my toe into the pool to check the water before wading in. From social media, to blogging to events, I am giving myself permission to ease my way back in and only doing what feels right. Also, if something feels right one day and not the next, then that’s ok too. So, this week there is a blog - will there be one next week? Who the heck knows but today writing felt right.
Grief is complicated. Understatement, I know, but here we are. I’ve spent the better part of the last six weeks trying to fill my time and distract myself, but I realize now that to move forward I need to face my contradictory emotions. An inchstone at a time I have to do this.
November 18th had been looming in my calendar: CURE’s annual benefit, where I was scheduled to speak in front of 1,000 people. The theme for the evening was, “Taking Flight”, inspired by the name of one of CURE’s research grants that is awarded to a young investigator. Leading up to that night, I was feeling less like taking flight and more like failure to launch. However, in usual CURE form, it was an inspiring night and I am honored to have played a small part.
After the immediate aftermath and planning of Adelaide’s service, the love filled chaos of family and friends, powering through multiple trips and halloween thrown in the middle, I’m finally home and it’s quiet. Reality hit me like a freight train as I’ve struggled to envision my new normal without our medically driven routine and the corresponding lick-kisses. Where do we go from here?
As if going to Epilepsy Awareness Day at Disneyland after losing Adelaide wasn’t hard enough, it was supposed to have been her Make-a-Wish trip. When we finally came to terms with the fact that she would not be able to attend, her Make-a-Wish team came through with an extra-special early birthday party full of its own magic. This week we learned that Miss A’s magic lives on and is out there waiting for us - when we’re ready to find it.
November 1st, marks the first day of epilepsy awareness month. So, who better to lean on for this week’s post than my mentor in all things epilepsy, advocacy and fundraising: Susan Axelrod, CURE’s founder and my cherished friend. She is the very definition of a warrior mama and I will never be able to thank her for the road she paved on which I march today.
No amount of flowers, food, alcohol or words can fill the gaping void left in Adelaide’s absence, and right now, I don’t want anything to. This week, I was reminded of the words of another warrior mama whose son also has a neurodegenerative disorder and maintains her own well-written blog. Many of of her posts hit home but there is one in particular that I keep coming back to: "Sit with me in the dark".
