By Em Cao

Less than two weeks before my 19th birthday, I was diagnosed with a rare bone disorder—Gorham-Stout Disease (GSD). Gorham-Stout Disease, also known as vanishing bone disease, is characterised by a progressive loss of the cortex of the bone.

Nothing felt real.

Everything I thought I knew about myself and the world up until that point began crashing down. Nothing felt real. I had experienced 18 years of life as a healthy human, how could this be happening to me now? How could this be my reality?

After extensive X-rays, CT scans, MRIs, and a bone scan, I learned GSD had ravaged the bone around my hips and pelvic girdle. No wonder I was in so much pain. Looking back, I had wished I saw the signs sooner. I had been experiencing pain in my hips and a limp in my walk for a year before my diagnosis. I thought it was because I was exercising improperly. Boy, was I wrong.

Questioning God

Now seven years into my initial diagnosis, it’s been a journey to accept that I’m experiencing this disease, along with a subsequent physical disability due to it. At 19, I could no longer walk, run, or dance on my own two feet. I needed the assistance of mobility equipment, such as a walker, crutches, or a cane to be ambulatory.

At first, I felt like I was at the effect of my life. Life was happening TO me. I questioned my faith. “If God were real, why would they let me experience this? What did I do to deserve this?” I would ask myself. I would get no answer. I felt devastated, depressed, anxious, angry, and frustrated. I was a victim to this twisted tale.

Gaining faith again

As I entered my 20s, I started getting into meditation, mindfulness, astrology, and spirituality. I began reading personal development and spirituality books. The learnings I received from these practices and tools helped me to feel more accepting of my new life with a rare disease. I started to reframe my mindset after reading The Four Agreements by Don Miguel Ruiz. It taught me how to take control of my life and move out of victimhood. I also started speaking kindlier to and about myself.

It wasn’t until I read The Untethered Soul by Michael A. Singer that it sparked a relationship with God again. It taught me that nothing I was experiencing had anything to do with who I was as a person. I wasn’t a bad person who deserved to experience pain. Maybe I was chosen to have this experience so I could be a light to others having similar experiences. I started trusting the Universe again. I started to gain faith. I felt an overwhelming sense of love and connection to Spirit that has only continued to grow.

*Note: I use Universe, Source, Spirit, God synonymously.

Discovering the healing benefits of reiki

In the Spring of 2022, I experienced reiki for the first time in a seminar at a local holistic expo. The group reiki session created an overwhelming feeling of delight within me that I only felt when I meditated.

Reiki is a Japanese energy healing technique that promotes relaxation, stress reduction, and inner peace. Rei means ‘spiritually guided’ and Ki means ‘life force energy.’

I had heard of reiki before but I didn’t know what it would feel like. After I left the seminar, I felt so relaxed, clear, and light. Even my pain felt reduced in that moment. I knew from then on, my relationship with reiki was just beginning.

Becoming A reiki practitioner

I then booked an individual reiki session, which was extremely healing and transformative. I started to wonder if this could be something I could do too. Less than a year later, I signed up for classes to get certified in Reiki Level I and Level II. The ability to heal myself had persuaded me to pursue Level I. Now, whenever I have physical pain or feel an emotional low, I facilitate a self-reiki session which always helps me feel better in every sense. I even meditate with reiki.

Before I was diagnosed with GSD, I had wanted to be a doctor. I realised that becoming a doctor 1) would be physically difficult for me and 2) it wasn’t actually my dream. When reiki came into my life, I realised what was true—that what I always wanted to do was help people. So, when I discovered I could also help facilitate the healing of others, I jumped at the opportunity to get certified in Reiki Level II. I knew I was meant to be a healer, maybe not in the medical community, but in the spiritual.

Me now

I’m 26 years old. When I think back to the 19-year-old me who was recently diagnosed, I feel so much love, compassion, and grace for her. She did the best with what she knew at the time.

Currently, I work as a reiki practitioner and as a life coach. I get to work from home and occasionally do in-person sessions. I use a wheelchair to get around, which has helped give me so more independence and live a (much less) pain-free life. I’ve even begun to re-explore my love of traveling, now as a wheelchair user. I went on my first solo trip to Texas in April of this year to see the total eclipse — it was an unforgettable experience.

Now, I’m in the process of building my business, so I can continue to help more people. I teach people how to remove their limits so they can lead fulfilling, authentic lives. If it wasn’t for everything that happened in my life, I wouldn’t have the tools, knowledge, and ability to help others in this capacity. My journey with GSD led me down a spiritual path—one that has connected me to my soul’s purpose—to live an authentic life where I get to help others do the same.

I am finally at cause for my life. I now know that life is happening FOR me, not TO me. This knowing wouldn’t be possible if it weren’t for reiki and my relationship with God/Universe/Source/Spirit.

Editor’s note: Please reach out to hello@rarerevolutionmagazine.com to share a piece in this column. In our Sunday sessions column, we invite spiritual, faith and community leaders to share their wisdom with the rare diseases community. We also invite members of the community to share their reflections on how spirituality or faith has been a part of their rare disease journey.

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