We have listened to their first hand accounts and thanked our medical professionals profusely. We have rightly called them heroes and compared them to soldiers defending our country from this evil viral invader. But if we are going to make these comparisons then it is time that we treat these professionals like the soldiers they are. Post traumatic stress disorder is already rearing its ugly face in our hospitals and we should be getting in front of it.
Hey! Guess what?! This week was actually better than last! Maybe I’m finally flattening my own emotional curve, though, I think we probably need a few more weeks of data to be certain. Oh, I was definitely still heavily dependent on my meds, there were tears, and more than a couple anxiety induced emotional-reset naps… but there were also more frequent good moments and I’m going to hold on to that. What spurred this shift, you ask? It was pretty basic, actually: I felt needed and useful. I fed my purpose.
Two lifetimes ago, I remember discussing my career trajectory and a five year plan with my boss. This conversation would replay in my head as I was administering Adelaide’s meds or chauffeuring her to the next appointment. That’s when I decided that five year plans are bs. But now, as this pandemic has taken me from treading water to treading tar, I wish making a plan was even feasible.
This is the face I used to make when someone would mention silver linings to me in regards to Adelaide’s life and death. Well, it was the face I was making on the inside anyway. Like so many parts of life, I’ve come to understand that with this pandemic we have to acknowledge the good with the bad, the storm with the rainbow and the pain with the silver linings. You can’t have one without the other and, oh my gosh, do we need the good right about now.
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.
