I have been very busy these last few months making connections with other patients, researchers, and writers. It’s not been easy given the COVID pandemic. Zoom meetings and emails have replaced the in person and personal. We are all required to adapt and become comfortable with the uncomfortable reality of life during COVID.
On the one hand, healthcare has become more complicated but also more rationale as we are all reduced to faces on screens. As a patient, I now take up the same physical space as my physician in communication and we meet on more neutral ground: not the hospital or medical clinic. This has been a good thing for me. I don’t have to travel, don’t have to pay for parking and this has served me well over the past nine months. It does beg the question though; why did I have to do that before?
Going digital has been a real challenge for many patients, but has also presented some real opportunities. Here are some of the ways I have been making connections over the past few months.
As a patient with an incurable rare disease, there are no easy answers and not much reason for hope for a cure, at least in my lifetime. The inexplicable resilience of humans to withstand all manner of insults to body and spirit comforts me. There is much we do not know about rare disease, but there is no evidence that hope is unwarranted. In the face of such dreadful uncertainty, I choose hope.
I remain very grateful to the many teachers, advisors, counsellors and coaches that have helped me to recover and maintain my health over the past four years. Deeply humbled by the many hard working researchers, scientists, physicians and healthcare workers who on a daily basis demonstrate their dedication to the health of everyone. Stay safe and keep making connections. Here’s to a better 2021!