Keep shining, beautiful one. The world needs your light. ~Author Unknown
Yesterday I returned from a three-day retreat in the Santa Cruz mountains, getting away was like a breath of fresh air, and a wonderful chance to get centered and refocused on my work.
I needed a break. I was having severe hip and knee pain from a near-fall I had in September. Unbeknownst to me, I had a nasty sprain but continued to attend daily Pilates and spin classes on the weekends. The pain had become so bad, I had been in the chiropractor’s office every day for ten days straight The overwhelming feeling of discomfort made it hard to focus on anything.
A few days before I left, I received an email with the Subject line: “ARFID”; my curiosity was piqued.
The email was from a woman whose 17-year old son has ARFID; she had found me randomly after one of her ARFID searches. I remember how I too had spent hours Googling “ARFID” out of desperation and for answers. My son did as well.
The email was brief, explaining she lived in the Bay Area and that she had had little success with her current provider. I could feel the frustration and discouragement in her words.
Suddenly, I didn’t feel so alone. I felt like someone had joined me on the ARFID island.
The email had arrived unexpectedly. I hadn’t written any recent updates about my son’s treatment; having a child with ARFID is isolating and writing about it frequently causes me to spiral downward and with my sprained hip and knee, I wasn’t in the mood to write, especially about ARFID.
Until last week, I hadn’t met another parent who was dealing with ARFID, it was very strange to communicate with someone who is dealing with the same frustration and desolation that I’ve been experiencing for over sixteen years. I replied to her email, sharing some basic information about our treatment; I told her I was more than happy to speak with her. I wanted to hear her story as well.
I received a response the next day and learned that her son had been diagnosed with ARFID three years ago. She too was struggling to find adequate treatment as well as with the isolation. As I read her email, tears well up in my eyes.
The effort I made sharing this emotional journey had touched the life of someone else; this email was proof that I wasn’t alone. I’ve never talked to another parent who is dealing with ARFID, nor has my son talked to another teenager with ARFID.
I couldn’t write back immediately, I had to collect my thoughts. It is a challenge to be empathetic and supportive, while re-living the pain and emotional exhaustion of our own ARFID journey, knowing we still have a long way to go to overcome it.
I closed my eyes, breathed in through my nose and then out through my mouth, setting the intention of focusing on light.
I tell her about the positive strides we have made: my son is maintaining a food log; he has committed to and is trying new foods each week. Despite not having ever tasted spices, he is now taking bites of Trader Joe’s Pollo Asado Autentico, the chicken I prepare on Taco Tuesdays and now eats apples and watermelon daily, this week, moving on to grapes.
As I share the positive results from CBT-AR treatment, I can see that while the process is slow, he really is making strides.
Every case of ARFID is unique and complicated. There were many days I felt like I had failed my son when I wanted to throw in the towel and give up because I couldn’t get him the help he needed. ARFID does that. It is a roller coaster of emotions and you have no idea when the ride will stop.
ARIFD has brought me to my knees, questioning everything I’ve ever done to help my son, but when I breathe and when I choose to embrace the light rather than curse the dark, the Universe comes through and reassures me that we are on the right path.