Noa

A Loving Warning: This story involves the death of a friend and ALS

This story is in dedication of my friend Noa. Noa was a teacher, had the most infectious laugh you have ever heard, and we’re convinced she could win the title of “fastest time in completing 1000-piece puzzles”. She was a breath of fresh air.

Pieces of the Puzzle

I confess that I’ve always thought of myself as a fairly strong person. I’m lucky enough to say that I have not experienced too many hardships. Not that my life has been easy or extravagant by any means. I’ve had to work hard, I’ve had to face challenge, but I have always been able to manage with a good support system by my side.

One of my closest friends and I had been as thick as thieves since the time of our early childhood. We saw one another through every milestone, every heartbreak, marriage, the birth of my children, divorce, marriage (again) and over the years, the death of her long-term partner and parents.

When she was diagnosed with ALS it rocked our worlds.  ALS is a progressive disease that eventually affects the muscles you use to walk, talk, and speak. The person’s cognition remains intact and despite what is happening to their body and how it functions, they are still the same person. As she had lost nearly all of her family years earlier, I vowed to be there for her in whatever she needed. Having said that, I did not grasp the gravity or distance of the path I was about to walk.

As ALS progresses, total care is eventually required. I was well advised to form a little community around us that consisted of a circle of friends, local organizations, and her care team. We split each task between us, taking turns doing the grocery shopping, checking in on her, picking up medications and requested supplies (which usually involved trashy magazines that she insisted we read to her) and over time to help feed and bathe her.

For any caregivers out there, a loving piece of advice that helped us is whether your loved one has ALS or a different diagnosis - sit with them and really listen. I learned very quickly not to try to “fix”, but simply to be there. There are many resources that can help you to learn how to hold space. I was lucky enough to have been able to work with Sarah who guided me through this process.  An additional piece of advice that I learned from Sarah was about anticipatory grief. Grief that can surface as you prepare to say goodbye to your loved one. In our case, as our friend slowly lost different abilities, we grieved in many steps. It is real and it is heavy.

My friends and I formed the most loving circle around our girl, and we enjoyed four additional years together, taking care of one another. She was not only a friend, but also a soul mate, a huge piece of my life. When the time came to say goodbye, though the road was long, challenging with its ups and downs, we wouldn’t have changed a thing. Caring for someone is one of the greatest gifts you will ever receive. There are no words for the bond it creates, the love it instills – regardless of the hard times. My loving plea to those who are caregivers: listen to your loved ones, they are the experts on their life and their values. Treat them with love, encourage them to use their voice, and most importantly don’t be afraid to laugh together.

I was convinced I wouldn’t survive my grief, but I did. It doesn’t go away, but it’s changing. I’m changing around it. As I continue to move through my life and to celebrate milestones, I’ve opted to bring my friend along with me – in the form of a tattoo; a puzzle piece.

 XOXO