I Can, and I Will.
Independence is a trait that has been interwoven into my personality, probably since birth. I consistently try to do as much as possible, despite my disability. It has been an ongoing personal goal of mine. And, truthfully, it’s something that I pride myself on. However, the common picture of “independence” looks a bit different than it does for someone like me. I live with a disability that significantly limits what I’m able to physically accomplish on my own. I’m not able to walk and have only about 10 percent mobility in my upper body. This is where my ever-growing and ever-changing village comes into play.
Family
I was blessed to have been born into a family that, upon hearing my diagnosis, made the conscious decision to both support and encourage me in any venture I wanted to take on.
When I was young, my dad wanted to share his love of skiing in the beautiful mountains of Crested Butte with me, and to my surprise he discovered an adaptive ski program which took me out on my first-ever ski trip. Situations like that first ski trip happened often because my parents wanted to make sure I always had the chance to experience all of what of this life has to offer. Beyond skiing, my parents also ensured they raised me as “normal” as they could – so I had weekly chores, earned an allowance, started working as young as 14, and managed my outside care beginning at age 16.
Not only is my family supportive during the adventures I embark on, but they’re always there during the trying times, too. Surgeries, illnesses, doctors’ appointments, therapies – my parents were there for it all; dropping everything they had going on to make sure I felt safe and cared for. Having their love surround me while I was going through both emotionally and physically hard experiences made all the difference.
Friends
Over the years, I’ve had the opportunity to connect with many other individuals who have the same disability as I do.
Back in the MySpace days (yes, I’m aging myself here!) I met my best friend K, on a virtual chat group for people with Spinal Muscular Atrophy (SMA). I was roughly 17 at the time and while I live in the US, she lives in Canada. We have been best friends since and she understand this life better than anyone. Because she too has SMA, her genuine understanding of the unique life we’re living has been an absolute godsend. Our struggles and triumphs are things we share daily, and there have been many times that I was going through something hard and couldn’t have made it through without her support.
Like K, I’ve met a ton of other people living this life who understand the challenges in a much more intimate way than my able-bodied peers. Having the ability to reach out to them when I need SMA-specific advice has been crucial. I can talk to them about anything from: “I’m going on a first date tonight! What are some good wheelchair-friendly date ideas?” to “I’m in the hospital and in respiratory failure; what kind of breathing support is best to help me?”
In some cases, my SMA network has legitimately saved my life. To say I’m grateful is an understatement.
Personal Care Assistants
I employ anywhere from three to six personal care assistants (PCA) at any given time and have nearly 24/7 coverage. It’s easier to imagine the kind of help they provide if you think about the day-to-day tasks you yourself do. Think: showering, getting dressed, using the restroom, make up, hair styling – these are all things I need 100 percent physical support with. On top of that, they also support me medically; things like changing out my feeding tube and my suprapubic catheter, monitoring my ventilator for proper breathing support, and administering medications and breathing treatments.
Obviously, the above tasks they assist me with are crucial to my, you know, survival. But I also think it’s important to note the ways in which their help allows me to THRIVE, too. My care team keeps me moving so I can do things like work my own job, attend church, take my kids to school or out for activities, go to concerts, travel, go on dates, volunteer – essentially do anything my adventure-seeking heart desires.
Family. Friends. Personal Care Attendants. Their day-to-day, dedicated help allows me to live the life I dreamt for myself. They help me be the woman, the mom, the friend, the music-loving human I want to be. And that, my friends, is what a true village does.
