MDA Ambassador Guest Blog: The Power of Lasting Friendships

Cassidy Nilles is a 36-year-old living with LGMD 2J who lives in the suburbs of Chicago. Diagnosed at age 20, she started using a wheelchair after the birth of her daughter at 28. She is a single mom to her 8-year-old daughter Capri. Together they live in a multi-family home with her parents and her sister Kelsy, who also shares the same diagnosis. Cassidy has an 11-year-old Maltipoo named Mila; and last year they started raising 9 backyard chickens.

I have found that friendships are some of the most important relationships you will ever have. At least in my life I know that to be true.

Cassidy and her best friend Bianca at their kindergarten graduation

My best friend Bianca has been the backbone to my life since the day I met her at 4 years old; long before I knew I had a disability. We met at pre-school orientation and 32 years later, we are still going strong and are even closer than ever. Her family is my family, and my family is her family. Anna, Bianca’s mom, has even been my personal care assistant and my roommate. She is like a second mom to me and “Momo” to my daughter. They have always shown up in my life – for the good, the bad, and the ugly – and have helped pull me through some really difficult times. Of course, like any friendship, we have had our ups and downs.

Adding a progressive neuromuscular disease can make navigating any friendship or relationship more challenging. Having friends who are patient, understanding, and empathetic to your needs is crucial. Bianca and I have another best friend of over 20+ years, Desirae. She is someone I can always count on. If I needed her for anything, I know she would be there.. There have been many times that I have called her after falling or being stuck on the toilet and she always comes to the rescue.  Desirae, Bianca, and I all went to cosmetology school in high school. Although we all do different things now, it is something that still brings us together when one of us needs something done with our hair. We usually do it at my house and we all find ways to be involved in the process!

Adapting to changes

One thing I’ve realized is that my friends, especially long-term/lifelong friends who knew me before my diagnosis, have had to mourn my old life and abilities as well. Although this is happening to me, they have been right there next to me, physically watching the progression and changes happen. I know that has been hard for them.

Cassidy and her childhood Friend Lisa at Lisa’s baby shower.

At the same time, there have been times that friends just truly don’t get it. They want me to have experiences and have fun, but at times they have not fully understood the severity of my progression. Back in my twenties that looked like walking a few blocks to a bar and my legs giving out, or trying to push me in my push wheelchair over too steep of a bump and it flipping over, or using ramps that I did not feel safe with in my power chair to get into an inaccessible home. And there are many times and many things I have stopped getting invited to and included in over the years. However, plenty of times my friends will come to me when they know getting out might be difficult. I have been truly blessed with the friendships I do have in my life. I know I personally make sure to put in efforts to keep these relationships strong and vice versa.

The value of friendships – new and old

Cassidy and her caregiver turned close friend Bree before the MDA Gala.

Forming new friendships as an adult definitely looks different- with or without a disability. I am someone who is very open about having MD and I am pretty outgoing – that has helped me form newer connections. Since my daughter Capri has been in school, I have made some very close “mom” friends with other moms from school and in my community. I have also found wonderful friendships in caregivers that have continued to grow long after they stopped working for me. Allowing myself to be vulnerable and open, and accepting and asking for help when I need it, has helped me and my new and old friends get closer. Staying in communication and checking in often on one another has helped to nurture and build our bonds.

My friendships are very important and special to me. I have always made it a big priority in my life to maintain the friendships that I have. Living with a neuromuscular disease can be very isolating at times, but having friends who make the effort to understand and become familiar with my needs to meet me where I am makes navigating my life a little bit easier. To experience true friendship is one of the biggest blessings we can have in our life!