Yesterday, I watched Jane and Joe Grillo’s weekly episode of Transition Tuesday. They discussed an important topic. They discussed grief, loss, and how it impacts disabled people. I have experienced much grief in my life. It never gets any easier. Cerebral Palsy does affect how I grieve.
I’ve lost a few of my family members over the years. It’s always a sad occasion. I know I won’t see them again. Both of my grandmothers have had dementia. It is heartbreaking to watch someone you love struggle to remember things. I’ve always wished that I could trade places with my grandmothers. It makes me sad to see anyone hurting.
However, dementia has shown me that people don’t need to remember things to have a connection with you. I will cherish the time I’ve spent with my grandmothers for the rest of my life. There have been times when they didn’t remember things, but I’ve learned to be patient. When my grandmother has a conversation with me, however brief, I cherish it. Hearing her say, “I love you,” is priceless.
Years ago, when I visited my grandmother, I brought in my iPad. I downloaded versions of game shows like The Price Is Right and Family Feud. My grandmother could remember the rules of the game shows. I used her love of them to connect with her that day. Over a decade later, memories of playing The Price Is Right still bring a smile to my face.
Cerebral Palsy has taught me that you don’t need to communicate using traditional methods to have meaningful connections with people. Growing up, I knew many people who had complex communication needs. It never mattered to me. I knew that I should talk to them like any other person. Talking down to someone is infantilizing. People who have difficulty communicating still have feelings, needs, and personalities.
Although I am verbal, sometimes people don’t treat me like a 23-year-old. I can’t stand when people talk down to me. I am an adult, so please treat me like one. Talk directly to me instead of my family member or PCA.
Last year, my childhood dog passed away. It was harder than I thought it would be. Lowell was there for me through so many hard times. In 2012 after inpatient surgery at Boston Children’s Hospital, I couldn’t wait to see him. He was so excited to see me. He had a way of knowing how I was feeling. Whenever I was sick or upset, he stayed close to me. I wouldn’t trade the years I had with him for anything.
One of the most challenging types of loss I’ve experienced is when a friendship has ended. I’ve lost count of the number of friends who have left me. In January of last year, someone I considered a close friend stopped talking to me entirely. They also led me to believe that a friend no longer liked me. More so than ever before, this hurt. I truly thought I’d be friends with this person for years. For months, I’d hoped to reconcile with this person, but by the fall of last year, I knew it wouldn’t happen. I’ve made peace with this.
Sometimes people didn’t want to be my friend because I have CP. Many people no longer wanted to be in my life when I would mention that I couldn’t climb stairs, drive a car, or get into their houses. Fortunately, I have friends now who are more than willing to accommodate my needs. I was able to go away overnight with them in 2018. We saw a Boston Bruins game at the TD Garden. We all had a wonderful time. It was a bittersweet trip because it was the only one the four of us took. I wish we could have taken another one before our friendships were torn apart.
Grief is a complex experience. No two people grieve the same way. For me, it comes like waves in the ocean. Sometimes it’s slow and subtle. Other times it hits me all at once and knocks me down. Grief is a human experience, and it’s affected by my disability just like anything else.
I love your articles Grace. It makes me think of people who I thought were my friends only to find out they weren’t. So, I have come to the conclusion that if they don’t want to be my friend, it is their loss. Ditto for you Grace!