We’ve gotten to the part where the news reports are beginning to resemble a Michael Crichton book more than real life. Meanwhile, my brain is making sure to split its time equally between grief and anxiety - how considerate. How do we find control in the unprecedented and unpredictable? Thankfully, Adelaide gave me years to perfect these skills. Still, I’m finding myself a bit rusty.
The other night, I was laying in bed unable to sleep. My mind was racing in typical anxiety fashion until it found it’s way to the memory of a short essay that nearly every special needs parent receives upon finding out that their child will not be living the life that had been envisioned for them. It’s called “Welcome to Holland” by Emily Perl Kingsley. It dawned on me that the current corona-virus world is living a version of this essay: they went to bed in their own homes but woke up in Holland. The times may be unprecedented but major life upheaval is not.
Throughout my time writing this blog I have focused primarily on Adelaide. Yes, I’ve spoken about myself and how I’ve processed, coped, failed and persevered as her mother and caregiver. But aside from a few comical quips, I have steered clear of my own, sometimes debilitating, condition: anxiety. This week has been seriously rough in the anxiety department and I know I’m not alone. So, who’s up for some mental health intimacy while we’re social distancing?
Wednesday night I started to write a post about how terrifying COVID-19 is to the medically complex and fragile communities. I mean, our normal was already face masks and obsessive hand-washing for years - where do you go from there? But then I realized it would be so much better to hear from a medically fragile individual who is facing COVID-19 fears personally. I am honored to present a guest writer this week, my dear friend, Courtney, who so clearly explains what is at stake for the medically complex community and why you should care.
First and foremost, Miguel’s return to Hamilton on Tuesday night was flipping fantastic. More on that in the post. But also, the Richard Rodgers Theater, where Hamilton plays in New York, and the Cervantes family go way back. Everywhere I looked the ghosts of our former lives were playing out scenes of their own. So. Many. Memories. How do we reconcile those memories with the very different people we are now? We have to figure it out as we go because the show goes on whether we ready for it or not.
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.
