Our New Reality
As it becomes more and more apparent COVID-19 isn’t going to disappear quickly emotions are running high. Of course this makes sense, there is no real end in sight, so many lives are being destroyed-people losing their jobs and loved ones dying. And yet, just like in my own rare disease journey, we find ourselves waiting for science to catch up. For them to make a vaccine and figure out better treatment options so people do not continue to die because they do not know.
As I have learned after decades of waiting for science to catch up to my own rare diseases- the wait feels torturous- it is so hard to practice patience and living in the moment, to not lose hope that answers will be found and that life can once again resume as "normal."In our new reality, the novelty of home school, zoom dates, and grocery delivery has fallen away and our own new "corona" normal sets in. We are now in the grieving phase- realizing what is being taken from us- milestone moments, the end of the school year, celebrations with family and friends. In truth this week, I have often thought- welcome to my world. I remember every wedding, birthday dinner, bachelorette party and trip I've missed. At a certain point, in my health journey those moments became too dangerous and the hours of reactions I would face after - injecting myself with medications was never worth it.
In the early years of my diagnosis, I would cry defeated after I lost another thing from my "pre-diagnosis" life- losing another food, another activity I could no longer do safely, another treatment option I was so hopeful would be my cure. I would be angry and sad but ultimately had to focus on what I still had. All rare disease warriors understand this feeling of loss deeply but also never give up hope.
So yes, this feels horrible and devastating - and it is- you must take your time to mourn what we are losing - no matter how big or little these losses are they are all real for each of us right now.
But I also hope you remember why you are doing this. I will happily stay home for another six months if it means that my son will look back and remember this as the crazy time I was his Kindergarten teacher and we never left our house instead of as the time his Mom died from a new virus. Now that would forever destroy his life.
Sadly, we know there are many right now who face that level of destruction, of losing jobs and their livelihood or even more heartbreaking, their parents and loved ones -all dying too soon. But please know that by doing your part- that by staying home- and yes by missing some events and moments - we are each saving lives as we give science time to catch up. And as impossible as it often seems - I know it eventually will.
I remember so clearly, after a particularly awful reaction to a new medication, my very wise allergist, held my hand as I cried -feeling scared and defeated- she said, "take your five minutes to be upset and then we will look forward." My Mom and I reminded ourselves of her words constantly - and I still do today. So yes- take your 5 minutes--or however long you need-- be upset - be angry- but then look forward. Find the new possibilities each day may bring, focus on what you have found, not what is being lost and be grateful to face another day, even if our new reality looks different then what we are used to. I know I am.
**Editor's note: I know that not everyone has a safe place to live during this lockdown. For those that may be facing domestic abuse please visit: https://www.thehotline.org/help/. **
