Directions Spring 2020

Adapting to a New Normal…Again

By Dr. Al Freedman Family Psychologist and SMA Dad

• How we stay connected with others: Yes, we need to “physically” distance, but we also need to experience social connectedness. Technology allows us to stay socially connected in ways that are very healthy and helpful at this time. • Howwemake choices about the use of our time: Because of SMA, many of us are already creatures of habit. It helps to follow familiar routines; watch only asmuch news about COVID-19 as you need to keep safe; read, watchmovies, and enjoy time with your family. Relax and take a break from the difficulties happening in the world around us. • How we plan and prepare: Preparing for the unexpected helps us to feel more in control and less anxious. For SMA families, it’s always important to create and follow a health plan, to have needed medical supplies on hand, and to know how to reach our treatment providers should we need help. Accept help as you need to and take appropriate precautions with your caregivers. You will feel more in control if you are clear about what you expect of your caregivers and they will feel more in control if they feel protected, too. All these strategies are well within our control. This virus is very contagious. That’s why everyone is so concerned. But, as I have also learned frommy many years as an SMA parent and as a professional, there are some other, more positive things in our lives that can be contagious… A positive attitude is contagious. Resilience is contagious. Having hope is contagious. Gratitude is contagious. Frommymany years as a member of our Cure SMA community, I feel very confident that our families are as prepared as anyone to face this challenge just as we’ve faced somany other challenges that have come before.We can adapt, once again, to a newnormal, with grace and dignity—andmove ourselves from feelings of fear to feelings of hope, gratitude for each and every day, and love.

The world has been turned upside down by COVID-19. For families affected by SMA, this isn’t the first time our world has been turned upside down. None of us ever forget the day of an SMA diagnosis. You may remember feeling shocked, disoriented, anxious, sad, scared, or some combination of these. You may remember waking up in the morning shortly after receiving the diagnosis and thinking, “Maybe this is all just a bad dream. Maybe this isn’t really happening.”As time passes, most of us find that we can come to terms with the diagnosis and adapt to what I’ve always called “our version of normal.” It is very common for us to experience strong feelings in response to drastic changes in our lives. Just as an SMA diagnosis elicits a wide range of strong feelings, so, too, has this worldwide pandemic. COVID-19 has understandably caused many in our community to be fearful—people affected by SMA are already very physically vulnerable, so it makes sense why we may feel that our sense of safety is threatened. But in many ways, our SMA community is in a stronger position to understand and manage the feelings that come from this crisis because we have experience with abrupt change, living with uncertainty, and the need for isolation. As a community, we are well prepared to face this new challenge. We know how to adapt, we are resourceful and creative, we are resilient, and we are hopeful. These qualities will serve us well as we move through this complicated period. Although we are well prepared to handle the unexpected, the feelings of anxiety and vulnerability we may feel during this pandemic are very common and need to be respected. There are many aspects of this pandemic that don’t feel within our control. Uncertainty is unsettling for all of us. It’s very difficult to be in a situation that doesn’t feel in our control. But we do have the ability to focus on what is in our control. Focus onWhat’s inYour Control It will help us to shift the focus from the pandemic—something we can’t control—to what we can control. Among the things we can control are: • Howwe take care of ourselves: Getting enough sleep, healthy eating/ nutrition, spending some time outdoors.

If you have questions about this topic, please feel free to reach out to Al Freedman at al@freedmancounseling.com.

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DIRECTIONS | SPRING 2020

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