On a Sunday night after family dinner, my son who has been in recovery from an eating disorder for 19 months summoned me to please come to his room.
As I got to the top of the stairs I found him hysterical in tears. My first reaction was, “Oh my God, please don’t let him tell me that he had relapsed again.” The sheer horror and fear in his eyes were a look I had seen many times over the past five years. I went into his room and he began to sob. He shared with me a post from a girl he had been in residential treatment with the last time he was away. The post said she made the choice to die with the aid of hospice, and she was saying goodbye to her friends and loved ones. I sat in shock and disbelief. My mind went into overdrive with fear overcoming me.
I have had a lot of therapy, coaching and advice, but no one had prepared me for this. To watch this play out on social media was horrific. I held my son as he wept like a child. I stroked his hair telling him everything would be fine, but how sad and how sorry I was. When he came up for air, he requested some time to be alone to process what he had just learned. Reluctantly, I went downstairs just for a short time to share the devastating news with my husband and call his therapist. I did not want him to isolate or be left alone too long with his thoughts.
Quickly, she called me back. We talked about how to handle this horrific news. We knew it could be a potential trigger that could lead to survivor guilt and into a backward spiral to his past. She gave me wonderful tips. She advised me to try and keep his mind busy, and not let him perseverate on the possibility that perhaps death should have been his fate, not hers. We talked about the fact that some patients in this situation feel that they themselves did not successfully complete their own eating disorder. It sounds warped, but, it can occur. We also reached out to a friend of my husbands who was in recovery from his eating disorder and had been through a similar experience. That person in turn reached out to my son. What he told him was incredibly helpful. He advised him to write a letter that would never be sent, but would help him sort out his feelings and tell her what she had meant to him and to the world. He reminded my son that this young woman would always be with him in his heart. He shared books and videos to watch as well.
As the days went by, we talked about this young woman a lot. My son saw his various professional care team members and talked about losing his friend. He eventually used his wise mind to understand that he had to go on despite his grief. He had to celebrate his own recovery focused life. While he would never discuss it with me, I am sure he relieved his own near-death experiences when he too was hospitalized for refeeding. In those times, he had also been in that deep grasp of his eating disorder, lacking the will to fight. He also talked with a few of the people he had met who knew this young woman and they shared stories of how how amazing she was. They shared how they too were coping with this devastating news. While this was helpful for him, we monitored this interaction to ensure he did not spend too much time reliving his past. Resiliently, he handled this tragic situation with dignity, courage and grace.
The young woman passed nearly two weeks after that first posting we read. I have found myself thinking of her and praying for her and her family constantly. I wept and felt a pervasive sadness that I had not felt since those very tough days in treatment with my son. I did not even know this beautiful young woman, and yet I felt like I had known her as I had known others who have struggled alongside my son. It haunted me in ways I never imagined. It will haunt me for years to come. To see someone struggle and fight, to ultimately lose the horrific battle is incomprehensible.
Eating disorders have the highest mortality rate of any mental illness. I have known this but, the reality when you see it is devastating. As a parent, there are moments like these when you relive all the memories and the battle you have just endured. You also are reminded that the eating disorder is never really gone. It is an illness that the patient will always carry with them. They are vulnerable and fragile in times of stress and sadness. It is vital that we always pay attention and never let that guard down. Like a weed in a crack in the sidewalk, it can spread and grow if not tended to. It is so critical that caregivers and family use resources and communicate constantly, even when your child does not want to. This beautiful young woman touched so many lives. She was an angel to so many and brought such joy into their lives. The loss her family is going through is unimaginable.
I dedicate this article to this sweet woman who I did not personally know, but whom for sure touched my heart and certainly that of my son. No one can prepare us for death. There is not a playbook. As parents, all we can do is love, hold onto and support our children as they go through losing someone they love. In times like this they show their vulnerability to us, and we discover how deep that bond is to protect them and ensure they cope and keep moving forward each day.
I hope that anyone who may be struggling from an eating disorder reaches out. There are so many people who can help. Please know that recovery is possible, and life is worth living. You are not alone.