Expanding my SMA care team with mental health support

The Apple TV series “Shrinking” features an ensemble of messy characters. Lead protagonist Jimmy (played by Jason Segel) is a widower who struggles to care for his teenage daughter, Alice (Lukita Maxwell). As a therapist, he likes helping others, but he has a hard time taking his own advice. Jimmy’s colleague Gaby (Jessica Williams) has issues embracing happiness, and his patient Sean (Luke Tennie) is a veteran dealing with post-traumatic stress disorder.

Harrison Ford plays Paul, Jimmy and Gaby’s boss, and a mentor figure to the rest of the cast. He gives sage advice to everyone around him, but he often neglects his personal demons. A major part of his story centers on the buildup and aftermath of his Parkinson’s diagnosis. He goes through stages of grief and denial as he learns how to live with the disease. Eventually, he gets to a point where he realizes he needs help.

Jimmy, Gaby, and Paul each specialize in mental health, yet they often fail to take care of themselves. This notion is especially relatable in the world of rare diseases and disabilities.

Recommended Reading

April 18, 2024 Columns by Jasmine Ramos

The importance of seeking help for mental health challenges

I’m no therapist, but …

As an adult with SMA, I’m accustomed to not only enduring physical and emotional hurdles, but also helping others work through their struggles. Throughout my life, I’ve experienced long hospitalizations, prolonged illnesses, broken bones, chronic fatigue, disability progression, respiratory issues, and coexisting conditions. Then there’s the emotional impact of managing caregivers, losing friends in my community, and fighting ableist systems.

When people seek me out for advice or empathy, I don’t see myself as inspirational or infallible. It’s natural that I extend empathy toward others, as I believe in the innate humanity of each person. Where we can help, we should.

I’m no therapist, but I need to have compassion and people skills to do my job. I produce and manage different forms of content for this site’s parent company, but my primary role is supporting people. Both my colleagues and direct reports know that I’m approachable, and they come to me on good days and in times of crisis. Nine years into this gig, and my co-workers are more extended family than people I message on Slack. They’re the people with whom I’ve laughed and cried, exchanged pop culture references, talked to throughout the pandemic, and supported on their worst days.

I like helping others who face immense physical and emotional challenges, but I couldn’t support others if I didn’t take care of myself.

Looking inward

In 2024, I started seeing my friend Amber Bosselman as my life coach. Before our first virtual session, I had no idea what to expect or how life coaching differed from therapy and other types of mental health support. I was friends with Amber through SMA conferences, and all I knew was that I wanted to talk to someone who understood disability and my needs.

I don’t even remember what I brought up in that first session, but I poured out a series of thoughts, emotions, and obstacles that I was dealing with. She listened, responded with empathy, and helped me determine what I wanted from each scenario I discussed. From the beginning, she emphasized that establishing personal goals isn’t about creating a checklist. It’s about finding ways to improve my well-being and strengthen my relationships.

Since then, we’ve met twice a month, with some breaks along the way. Some sessions have mostly consisted of me venting about personal struggles. More often than not, I’ve come away with a better sense of how to process my thoughts and feelings. There are times when I enter a session unsure whether I need to consult about anything. Then I wind up discovering revelations about myself.

Prioritizing mental health is a challenge for everyone, but especially for those of us with SMA. We are so used to a never-ending parade of medical appointments that it’s daunting to add someone else to our schedules. My only regret is not seeking help sooner. Much like Paul and Jimmy, it took me time to look inward and assess my needs.

I now consider Amber a part of my SMA care team. She doesn’t prescribe me medications or conduct my pulmonary function tests, but she supports me in my mental and emotional journey. Hopefully, it’s a journey that will continue with many more sessions.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.