Living in the Here and Now
As warm weather and sunny skies filled this weekend it was easy to stay in the present moment. Instead of giving up celebrating my favorite holiday, May Day, I found a new pandemic safe way to bring Spring cheer to our family and friends. There was something so healing putting together the May Day treat bags and organizing our social distancing safe pick-up schedule. It felt like a small victory- not giving up on the fun of this holiday- of being able to see the excitement and smiles when bags were opened from afar-an important reminder that even in this challenging time we can still find shared happiness.
For many years now I have struggled being able to think too far into the future. Having a rare chronic disease will do that to you -your future is unknown and largely dependent on science moving research forward. Each day I walk a tight rope hoping I can maintain balance but also hoping if I do fall off my doctors will still have enough treatment options to help me back up.
Living in the present moment is something I try to do daily. As a planner it pains me immensely- but I have learned it is easier to think in days and weeks-and on harder days when my mast cells are unrelenting I think in minutes and hours. Decades and years scare me because so much is unknown. They still do not even know what they do not know. Will we ever have a cure? Will I live long enough for them to find it?
In the current pandemic so many of these same feelings and questions are faced by us all. It is so hard to accept that we can’t make future plans as our current reality is not going away quickly. Similar to my own rare disease mindset I am practicing accepting that once again I cannot look too far into the future. All decisions about when and what life will look like will be made for us- dictated yet again by science catching up.
So how do we make sense of this? Of having our whole world flipped upside down and not knowing how or when some semblance of normal will return? We must focus on what we can in the present - something every rare disease patient is practiced in. I can’t predict if next week will bring a huge reaction, if I will gain or lose a food or if a new medical breakthrough will be learned that could change my life forever. But no matter how hard life may seem, I can still find happiness and joy in spite of the uncertainty of my future. I can still find ways to laugh and be silly, to dance and sing - to delight in those around me- never taking for granted another tomorrow. This is the resiliency a rare disease patient carries and something the rest of the world must also start practicing.
In the chaos of our life that once was- the constant rush of life we all lived - it was easy to get consumed with what comes next. This pause, as challenging and scary as it may be, will hopefully allow us all a chance to live in the here and now better- to find the good in each day, to laugh and be silly in spite of our losses, even to decorate and celebrate more. Yes, our celebrations and time spent together may look different but if we can stop focusing only on our future losses and instead practice living in the present moment- I know we’ll be surprised by what joy we may find.
