Nursing is hard but my special-needs brother helped me prepare for this career

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As a qualified nurse, the demands of my job make me think. As I read headlines, listen to my peers, and practice nursing myself, I think back to why I chose nursing: My brother, Nicky.

Nicky had beautiful blonde hair that my mom lovingly trimmed on the porch of his dorm. He had bright blue eyes – one of which was prosthetic and was regularly lost. He never took the first step. His abdomen and chest had large scars from major surgeries. He loved loud toys, which my parents bought in bulk and kept in his bedroom closet. Nicky had about two dozen cousins, 11 aunts and uncles, and he had a golden retriever…which he was kind of allergic to.

Nicky was officially Nicholas. But we never called him that. He was born with many special needs, meaning he could not walk, speak, or support himself. He was also my little brother and perhaps because of his challenges, not despite them, my youngest brother Sam and I had a special bond with him. Nicky was perfect in our eyes. His neon wheelchairs, feeding tube, habits, and needs were all a warm blanket to my childhood.

My parents worked hard to normalize Nicky’s needs and Sam and I learned how to help. When we were little kids, we first learned how to pack our wheelchair bag for trips. We knew which toys were allowed for which activities and how many bibs he needed. We learned how to insert and remove his prosthetic eye, how to carefully place a mask over his nose and mouth to perform respiratory treatments, and how to connect and disconnect his feeding tube to the liquid feeding bag.

Nicky listened with his whole body. “Hi Nicky,” we whispered in his ear. He would coo, wide-eyed, sometimes reaching out to find your mouth with his fingers and hooking on your lower jaw. He never said “I love you,” “thank you,” or “stay with me,” and yet his movements meant all of that. I’ve never experienced such a deep, wordless connection in my life.

When I got into nursing school, I didn’t know I was there because of Nicky. I thought I was there because I enjoyed learning about the human body. I wanted to have a measurable impact on people’s lives. I didn’t expect to be burned out from work, but I knew that shift, weekend, and holiday work were inevitable for at least part of my career. Having an ability to know how to care for people in times of greatest need – all of that excites me more than anything else.

I would learn early in my nursing career just how much my brother had helped me. Caring for someone who communicates differently teaches you to look beyond words when you want to learn about them. I entered the hospital rooms and homes of people who had difficulty communicating. Whether they were dying, spoke a different language, or were struggling with mental illness, I was comfortable. I could leave room for the unspoken. I was able to look at the person, spend time with them, and gather most of the information I needed to make them feel cared for, heard, and hopefully give them the highest form of validation – to be understood.

I often remind myself how important touch was in Nicky’s life. He loved touching hair… and then suddenly tugging at it. He loved putting things in his mouth – possibly including the missing prosthetic eyes. He just loved being close to his people and absorbing their presence. The warmth of leaning on friends, their smells, their voices, their sounds – that was Nicky’s love language. He felt the connection in those simple moments and it helped me understand the sacredness of togetherness.

In my work I have seen both the benefits and pitfalls of human touch and togetherness. The bruises that result from violence, the bruises and rashes that develop when a vulnerable person is left uncared for, the screams of lonely people who are not spoken to, gently stroked and held. Thanks to my brother, I learned that it is my responsibility to ensure that vulnerable people are treated with gentleness and love, and most importantly, dignity.

Growing up, my parents wanted me to have my own relationship with Nicky. I wasn’t very good at it in my 20s. I had a certain enduring sense of self that can come with a sibling with disabilities. Just as Nicky was beginning the end of his life, I returned to him. He forgave with ease. He never asked for an apology. Never held a grudge. He was my greatest teacher. I wish we had had more time.

Just as I learned to show up for my brother, I also learned to show up for my patients. Many of the people I cared for had little support systems and needed time to build trust with care providers. I might not have had answers to all her health questions or exactly what dressing her wound needed, but Nicky had certainly taught me how to surface. And so, as promised, I always stood in front of her door.

Nurses want to be at work. I want to be at work. I’m so sorry if I seem tired sometimes. We want to be present in your difficult moments. We want to hold your hand and lift your head. We want to clean your wounds and ease your pain. We would like to carry out your dialysis and explain your medication to you. We want to give you access to life-saving vaccines or walk your cancer journey with you. We want to teach you both the art and the science of grooming. But most of the time we just want to make you feel better. Nicky taught me that.

Glenna Fraumeni lives in Toronto.

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