Finding Humor in the SMA-PCA Bond

Living with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal care assistant (PCA), adds some much-needed comedy and also some uncomfortable moments to my life. 

Interpersonal relationships with a PCA

Talking about the not-so-clinical side of the PCA-client connection is important to remember our interpersonal relationships with each other. The special bond that people with disabilities form with their PCAs should be filled with laughter as well as trust to handle both the hilarious and somber moments.

Folks with SMA like me and our PCAs often become partners in crime, not just for daily tasks but also because we're loudly laughing at life together. After all, life is not just boring and depressing. Instead, it’s quite funny and ironic, and it’s important to keep that levity with our PCAs. 

Awesome communication leads to humor

Awesome communication is like the secret sauce to our comedy duo. My PCA and I chat away, spill our thoughts and feelings, and listen up like comedy connoisseurs, all while performing mundane daily care tasks. It's all about understanding each other's inside jokes and the punchlines. We don’t go overboard with the horseplay. We show each other respect and we keep things kinda dignified (we said "kinda"). I'm the boss of my life, and my PCA keeps it professional while sprinkling in some comedic flair.

For my PCA, being flexible is also an important part of the relationship. Arriving fashionably late is an art form. Most of the time, we only sort of stick to routines, show up when we can (with good excuses, of course), and keep everyone guessing like a mystery novel. It's all about creating trust in our punctually challenged world.

An adaptable routine takes into consideration that the PCA also has a life outside of just taking care of the person with SMA. We want to be a part of their lives while they are helping us with our care and independence, not dictate their every move without adjusting when they need it.

Becoming a team with my PCA

My PCA and I are a team! We set goals together, and I get to be the star of my care plan show. Teamwork is key, and everybody likes to have some control over their sitcom. Each day, I pick out my outfit and my PCA helps me accessorize. As a lot of you know, I wear eccentric pieces of jewelry so my PCA has become a small museum curator when finding the perfect items to enhance my flair.

There are moments of heartache that come with the territory too, like facing the realities of SMA. We may share a tear or two, but we also find strength in humor and support each other through the tougher times. My PCA is there with a listening ear or a side-splitting joke when things get tough. Sometimes, laughter is the best medicine, after all! 

Working through conflicts

My PCA is the cause of frustrations occasionally and I frustrate them, too, because individuals don’t always get along 100% of the time. Conflicts are part of life that are handled with serious communication and compromise, but sometimes we handle them with witty one-liners, we find a middle ground, and turn them into life-changing plot twists. If we can diffuse a situation with humor and understanding, it’s easier to maintain a good relationship that will continue to evolve with our PCAs.

The bond between SMA individuals like me and our PCAs is like a comedy-horror movie, with laughter, tears, and few jump scares. Building trust, keeping the laughs rolling, and facing the heartache isn't just good for a quality life, it makes our working relationship richer for both of us. So, keep these quirky tips in mind, laugh together, cry together, and continue on to a side-splitting, supportive, and emotionally resilient PCA-client relationship.