I met Sherrie Jeweline Navarro Heit, while 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 towards her thoughts on my new found 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 (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 private 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 non-stop 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 30th, 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 fast 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.
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 that was based on targeting symptoms instead of diagnosis diminished her trust in the western medical system. Her symptoms were often times untouchable and mysterious. She was left feeling like a lab rat and no better off then when she began. We both were able to find mental and physical relief from natural and eastern medicine. From the connective tissue gene that causes EDS which complicates organ function, blood pressure and dislocations etc, 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. Through researching her family history she found that she had several family members who had died of ALS. There is a specific gene mutation that is prevalent in her family. She was grateful that her son wasn’t born with the genetic mutation. I know she had hope that this illness would not effect her.
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 research studies for familial ALS (fALS), with Michael Benetar, PhD. 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 Mr. Benetar's conductivity test did not confirm the ALS diagnosis. This was upsetting because it made her doctors question her diagnosis and ultimately left her feeling unseen and unheard.
Sherrie died on April 4th, 2015. She was fortunate enough to chose the moment she wanted to say goodbye. When she had just enough strength left to say goodbye. She had ALS and was suffering, so it was time for her to go. She didn't want to leave 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 chocking 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 that 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 then I have in all of my life. She succeeded in creating a beautiful community. I'm fortunate enough to be part of it.