I met Sherrie Jeweline Navarro Heit on an Ehlers Danlos Syndrome (EDS) support group Facebook page. I noticed her participating in answering questions that were posted, sharing knowledge and research she had been working on regarding EDS. I appreciated that she was the kind of person who could think far outside the box, and I immediately gravitated toward her thoughts on my newfound connective tissue diagnoses.
It was May 2014 on this support group site that she posted a message asking for help. She explained that she had a 5-year-old son, Simon, and had just been diagnosed with Amyotrophic Lateral Sclerosis, or ALS, also sometimes referred to as Lou Gehrig’s disease. She said that it was progressing quickly and she didn’t have much time but was busy creating a support system for her son. Since she didn’t have family in Portland, besides her husband, Eric, she knew how important it was going to be for her to create a tight-knit community for him to be able to transition to not having his mother.
By the time I finished reading her message, I was crying a deep, sorrowful cry. As a mother myself, I couldn’t fathom what she was facing. I needed to reach out to her. In some way I hoped I could take on some of her pain, that I could lessen her load. I am loyal, and I wanted to give her that at the very least. Because I’m a photographer, I thought I could help by preserving memories. I messaged her immediately and offered to do a photo documentation of the remainder of her life. Capturing interactions with her world. Following her to the end.
She ecstatically replied, “Yes!” I connected with her immediately. We found we had so much in common and we could talk nonstop for hours. I loved spending time with her. She was so humble, and that made it effortless to take in her words and really listen.
I began photographing her life on her final birthday, July 30, 2014. What a beautiful, healthy-looking 43-year-old she was. Besides the slight lisp when she spoke, you couldn’t tell she was sick at all. Her disease was moving quickly, and by the end of August, she often had to use a breathing machine to help move air in and out of her lungs. She could hardly swallow at all because of ALS, and it was getting pretty hard to understand her when she spoke. By January, I couldn’t understand her words.
One of the things that really resonated with me about Sherrie was how she dealt with her silent illnesses. Difficulty in testing and limited treatment based on targeting symptoms instead of diagnosis diminished her trust in the Western medical system. Her symptoms were often untouchable and mysterious. She was left feeling like a lab rat and no better off than when she began. We both were able to find mental and physical relief, from natural and Eastern medicine for our illnesses — from the connective tissue gene that causes EDS, which complicates organ function, blood pressure and dislocations, to her ALS, which is complicated but ultimately causes the progressive degeneration of the motor neurons. When the neurons die, the brain cannot initiate and control muscle movement. This eventually leads to the body dying.
I would describe Sherrie as a loving, lovely, wise, rainbow spirit. She loved rainbows and believed that every color of light would be visible to her when she crossed over. She was sensitive and deep with a gentle gaze. She was so effective when she spoke that the first thing I noticed was the strength and compassion she possessed. She was an incredible mother, and her son was so well cared for. He is truly the gentlest, kindest boy I have ever met.
She knew since 1994 that she had the SOD1 gene mutation that can lead to ALS. She had witnessed two of her aunts pass away from this disease.
It was in late April 2014 that Dr. Kimberly Goslin, a neurologist with Providence, did a conductivity test. The results indicated that ALS was very likely. She had previously participated in a couple of research studies for familial ALS (fALS), with Michael Benetar, Ph.D. He was conducting a new study for a drug to slow the onset of fALS. With her diagnosis of the ALS onset, she was invited to participate in this study. I remember her talking about the experience and how disregarded she felt as a human. Then, after painful testing, she was told that she did not qualify for the study because Benetar’s conductivity test did not confirm the ALS diagnosis.
Sherrie died April 4, 2015. She was fortunate enough to choose the moment she wanted to say goodbye, when she had just enough strength left. She didn’t want to say goodbye to her now 6-year-old son and loving husband. The exhaustion and pain were so much to take, not being able to swallow and nearly choking to death for hours on a daily basis. Not to mention all of the other agonies she faced as her body was quickly deteriorating. Sherrie wasn’t going to let this illness steal her last moments with her loved ones. She wanted to go in peace and on her terms.
I knew she was going to be leaving soon, but it still took my breath away when I read the invitation to “Sherrie’s LAST rainbow party” in my inbox. I was going to watch her die. The next day.
Saying goodbye to Sherrie was hard. Even though I knew she needed to go, the loss was huge. She spoke about saying goodbye to Simon earlier that day and how difficult it was. We sang to her, blew bubbles, and we all cried. The phone rang, and someone made a joke about it being the people delivering the hospital bed she had ordered long ago but had never come, and we all laughed. There was so much love in the room.
I support her decision to end the suffering she was enduring. Although it breaks my heart and I miss her, I’m proud of her. She had her Death with Dignity drugs in her possession since early November 2014. She held on until it was all too much. The volunteers with Compassion and Choices were at her side, helping with the transition. Compassion and Choices is a nonprofit organization that advocates for people who are terminally ill and who want to end their lives in a humane, peaceful way. They have many resources and play a huge role in revolutionizing the laws surrounding this issue.
It wasn’t an easy way out; it was the best way out. I watched her say goodbye with hope in her eyes, not defeat. I learned so much about bravery and love in the short time that I shared and documented for her, and I learned more about strength than I have in all of my life. She succeeded in creating a beautiful community. I’m fortunate enough to be part of it.
Llewellyn Gannon is a photographer and graphic designer based in Portland. You can see more photos from Sherrie’s life at www.llewellyngannon.com.