Living with Myasthenia Gravis - ZuoAnn
𝘛𝘞://𝘴𝘦𝘭𝘧-𝘩𝘢𝘳𝘮, 𝘴𝘶𝘪𝘤𝘪𝘥𝘦 “It started with double vision and droopy eyelids and I visited an Ophthalmologist but was referred to a Neurologist. After running some tests, I was told that I had Myasthenia Gravis, MG.”
ZuoAnn was diagnosed with MG at the age of 19. At that time, there wasn’t any search engines such as Google for her to find out information of her condition, so she had to ‘follow blindly’ with what the doctors told her. MG affected all her muscles and oral medications failed to improve. Her weakness deteriorated speedily and developed breathing difficulties. Hence, she had to go for the last resort, removal of her thymus gland. She had to be intubated after the surgery as she couldn’t breathe on her own. During those days, MG was rare and the doctors weren’t able to find the right treatment and tried Plasmapheresis that eventually worked on her. She finally discharged from ICU after 3 months.
The side effects of steroids and treatments gave rise to more illnesses as she grew older. After resigning herself to fate, another nightmare surfaced. She was told that she had Glaucoma which has already progressed to an advanced stage. Almost 70% of the eye blood vessels were damaged and irreversible. It could continue to deteriorate and the possibility of becoming blind. She was angry and upset with the doctors for not helping her to manage the known side effects that could have minimized the loss of sight. Due to her limited vision, she chose to walk slowly behind to follow one’s footsteps or snailed alone with full concentration on the foot path.
In her late 20s, ZuoAnn had an unattended toe cut and the negligence led to Abscess. She had to go for a major leg surgery under Epidural Anesthesia instead of General Anesthesia. She was conscious of the entire process from the drilling, cutting of flesh from the lower limb and the slicing of a part of her skin from her upper leg. She was wheelchair bounded for 3 months. She turned hysterical as she was diagnosed with serious osteoporosis (side effects of steroids) at the same time She lost hope, courage and strength to continue with her life. She attempted suicide by swallowing a mixture of various medications. She survived and no one knew it was a suicide attempt.
For most relapses, ZuoAnn experienced swallowing difficulties and would admit to hospital for IVIG treatments. Previously, she used to put on a ‘mask’ in front of her family, assuring them she was strong, independent and able to manage her frequent admissions/biopsies alone. She accepted that she wouldn’t be able to climb up the corporate ladder as compared to friends of her age since work stress would trigger relapse. Fortunately, she had very supportive and compassionate bosses who gave her equal advancement opportunities despite of her frequent medical and hospitalization leaves. They had a better understanding of MG after watching ‘My Grandfather’s Story’ video where she was featured.
Her love relationships failed to flower due to her low self-esteem and frequent fluctuations of her emotions. Ever since she contracted MG, she totally lost confidence of herself, her life. The side effects of her medications disrupted her emotions and resulted in self-inflicted harm/pain. Fear, insecurity and inferiority made her doubt that she could find real love.
ZuoAnn’s life changed after taking faith in Nichiren Daishonin Buddhism where she met a wonderful Mentor in Life who guided her to realize her mission in this lifetime. She stopped asking ‘why me’ and understood that everything happened for a reason. She had transformed to a positive, confident and hopeful person who believed in her own potential. Her scars were victories from each battle that she was proud and no longer felt inferior. Presently, she passionately participated in movements that promote the values of gratitude, platforms that advocate Autoimmune/MG and volunteering activities. What were her goals in life? She wanted to use her own stories to encourage and inspire others to be grateful of what they have and to stay courageous, positive and choose hope.