Our COVID-19 Stories
In frequent – and sometimes frantic – conversations with colleagues, patients and friends, it was evident those with IDD experienced hardships that most outside the IDD world did not. This is how Our COVID-19 Stories was born.
BY SETH KELLER, MD
Life during the COVID-19 pandemic has been a rollercoaster – but without the excitement and thrills. We've endured the ups, downs, curves and have been tossed around. Unlike a rollercoaster, however, we can't predict what happens next. We don't know the long-term impact this year will have on us, our family, our friends, or the groups and organizations we support or who support us. Our sense of security and plans for the future were tossed out the window, and getting back to what we thought was "normal" is now our "new normal."
If you – or someone in your life – got really sick, hospitalized, or perhaps your loved one tragically died from COVID-19, then this terrible pandemic is an even heavier burden on you, as it is for my family. My mother, Mitzi, died last April from the virus. My family's very personal story is shared by over 380,000 Americans and counting. It's horrible. It's tragic. It's unbelievable. This outrageous number does not include those who had been sick and have dealt with, and even may still be dealing with the aftereffects of the virus. My family's tragedy happened early in the pandemic, and even though our mother was quarantined in her longterm care facility, it didn't matter, as she and other residents, all very vulnerable seniors, had no chance once the virus got inside the facility.
Moments before my mom passed away, my siblings and I had a FaceTime call with her to say goodbye. A FaceTime call. No soft touch, no kiss goodbye, no moment holding her hand as she slipped away. None of that. We still don't have the closure our mother and family deserve – and I'm not sure we ever will. As the virus surges across the country, we face a scary and uneasy daily life. We hope getting back to "normal" or a "new normal" is not far off. The news of the vaccination trials and their high hope of a huge reduction in the risk of further spread of the infection is a teaser. We can sort of see it, believe it to be true, hope for its safety and wish that we all can get it really quickly – but who can really be sure, judging from our rollercoaster of a year? When and where do we get off this ride?
My personal life is intertwined with my professional life. I am a neurologist specializing in the care of adults with intellectual and developmental disabilities (IDD). My practice in southern New Jersey has been greatly affected by the pandemic. We closed the office early in the pandemic and started video chats with our patients.'Aside from the person's specific neurologic difficulty, much of the conversation with them, including with their families and supports, was about the pandemic and how they were impacted one way or another. Speaking to people sitting in their kitchens, their living rooms, and even from their beds was so very personal. I got to see pictures on their walls, books on the table, the various awards that they may have won from Special Olympics. We often spoke about some of these personal items. And as we spoke about life during the pandemic, we had a deeper appreciation of the prepandemic life. The conversations covered what (and who) were missed, how they have adapted and tried to adjust. It was very clear that everyone had a story to tell – and sharing them was important.
GO TELL IT: Our Covid-19 Stories believes that sharing gives others the opportunity to understand your perspective, relate to your experience and it gives them the courage to share as well.
The IDD Community
The unique experiences of people with Intellectual and Developmental Disabilities (IDD) often unites us as a community. We relate deeply to families caring for a loved one with a lifelong disability, the importance of family and community supports, working with experts and specialists along the way, and also feeling the need sometimes to fight the fight and advocate for the rights as a deserving citizen who has meaning and value, and to be inclusive.
As a leader in national healthcare IDD efforts, I have been involved in education, training, and policy initiatives. This work has led me to meet and work with amazing leaders in the field of IDD in the United States, as well as from across the world. I know I am not alone and when challenges arise, it is best to reach out to my friends and colleagues to learn from one another, share ideas, collaborate across disciplines of care, and advocate together. COVID-19 is no doubt a burden we must all bare together, as a community. This is how Our COVID-19 Stories was born. In frequent – and sometimes frantic – conversations with colleagues, patients and friends, it was evident those with IDD experienced hardships that most outside the IDD world did not.
How would families and Direct Support Professionals (DSP's) be impacted by the pandemic? What would happen when programs closed down, mask-wearing is mandated, social distancing and quarantining are implemented, and the concerns of a dreaded "silent enemy" remain out there and are getting worse before we get back to a new normal? What happens to the maintenance of both physical and mental health? Who is more at risk than others? Who do we look forward to so that we may receive guidance and hope for the future? We are best when we work together. We During this unprecedented time, the Covid-19 pandemic has changed the lives of people with intellectual and developmental disabilities (IDD) – and it is the goal of Our Covid-19 Stories to share these stories. Its mission is to document and share this unique moment in time because the lasting effects of this virus are unknown, if there are any, and how life will look post-pandemic. Covid-19 has changed daily life for everyone.
For people with Intellectual & Developmental Disabilities (IDD), new normals are not easy. During this pandemic, Our Covid19 Stories believe that it is important to capture these stories so we can remember what life was like, encourage each other and work toward a future that learns from the unique experiences of people with IDD. must take note of what is happening to those with IDD, their supports and families during these difficult and uncertain times. Story- telling is one of the best ways to learn, share, and to understand what others are going through. All of us in the IDD field either directly or indirectly have had a COVID-19 experience. Not all situations are tragic, nor are they totally disrupting. Resilience of the human spirit and the will to get by, survive, and make the best of a difficult situation are aspirations that we all hope to reach and achieve.
The American Academy of Developmental Medicine and Dentistry (AADMD), in partnership with Positive Exposure created an online platform – OurCovid19Stories.org – to be able to share these stories. We interviewed people with IDD, their families, caregivers, healthcare providers and DSPs. I conducted a number of these personal chats myself and have been impressed by the eagerness to share. People's COVID-19 experiences are so different, and each person has had a variety of personal and social situations related to COVID-19 at some point during the pandemic. The ups and downs are exhausting, and the desire to get to the "end" of this and to a back to normal life is an ongoing growing hope and desire we all want, sooner rather than later. We want to get the word out to encourage more people to share their stories through this project. We're documenting the past for a healthier future. This is an opportunity to network, learn, and support each other in the IDD community. Your story might impact someone else profoundly or give others the comfort they need to tell their own story.
"Surviving" the pandemic requires us to lean on each other. All of us appreciate that the IDD world is made up of a community that includes those with IDD, their families, friends, DSP's, community support organizations, state and national leaders, as well as those healthcare providers involved in their care. We are all interconnected, and our stories need to be told together to form the whole picture. My family's personal tragedy is part of the fabric that has been woven into this unbelievable historic period of time. Many others will also be left with memories and stories that they will never soon forget. Please visit OurCovid19Stories.org and join this important personal campaign. Spread the word and encourage others to tell their important stories as well. •
MUST-SEE: These are the stories of people with IDD and their healthcare providers during the pandemic. We must document our past for a healthy future.
ABOUT THE AUTHOR:
Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications. He cares for individuals with IDD both in the community, as well in New Jersey's ICF/DD centers. Dr Keller is on the Executive Board of the Arc of Burlington County as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board.
ABOUT OUR COVID-19 STORIES
During this unprecedented time, the Covid-19 pandemic has changed the lives of people with intellectual and developmental disabilities (IDD) – and it is the goal of Our Covid-19 Stories to share these stories. Its mission is to document and share this unique moment in time because the lasting effects of this virus are unknown, if there are any, and how life will look post-pandemic. Covid-19 has changed daily life for everyone. For people with Intellectual & Developmental Disabilities (IDD), new normals are not easy. During this pandemic, Our Covid19 Stories believe that it is important to capture these stories so we can remember what life was like, encourage each other and work toward a future that learns from the unique experiences of people with IDD.