“But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” 2 Corinthians 12:9-10 ESV
Last week, you learned about RTD Type 2 (click here to read) through the experiences of my friend, Mallory, who lives with the disorder just as I do. This week, I am delighted to share my friend Megan’s experiences. As you read this post, I hope that Megan’s story will give you further understanding of life with RTD Type 2 and will equip you to share about this disorder in a more comprehensive and urgent way.
Megan is twenty-four years old. When she was two, she started showing symptoms: flat feet, hand weakness and unbalanced walking. At the hospital, doctors vaguely diagnosed her with “neuropathy.” Her only long-term “treatments” were daily multivitamins and physical and occupational therapy.
Later on, at age four, her vision declined. Her mother noticed that her left eye started to move randomly and beyond her control. Megan’s eye doctor discovered that her eye muscles and nerves had become weak (atrophic). This caused her to have trouble seeing details and objects that were far away. To compensate for these issues, she situated herself close to the TV, in the front row of classrooms, used glasses, large font and magnification programs when necessary.
As time went on, she sustained severe hearing loss by age six. She tried hearing aids to no avail—while making sounds louder, they did not become any easier to understand.
When Megan was eleven, she received her first cochlear implant. Everything seemed to change. Though she was not able to distinguish every voice and sound, after arduous and tedious repetition, she was able to understand voices in one-on-one conversations and pick up some ambient sounds. To connect to the hearing world, she read lips, fingerspelling and captions in addition to improving her listening skills.
During these years, Megan’s ability to walk diminished. Combined with her hearing and vision problems, she was quickly losing her independence and required an assistant to go with her to school. Furthermore, her upper body weakness caused scoliosis by age twelve, and at thirteen she underwent corrective back surgery.
Her health remained relatively stable for the next several years until college, when she experienced swallowing and digestive issues along with tongue weakness. Megan’s health spiraled further downward as she aged, was unable to be physically active, have proper nutrition and suffered infections. She did improve slightly after college as she exercised, but she still had no real answers.
A new neurologist suspected that Megan had a mitochondrial disease; he ordered genetic testing to confirm or disprove his suspicions. Instead of a confirmation, the results showed that Megan has RTD Type 2, a completely different diagnosis altogether.
Nearly two decades after Megan’s first symptom appeared, on January 6, 2015, the neurologist identified her disorder at last! Since her diagnosis, Megan has continued to take a variety of vitamins and supplements. Between the treatments and switching to a newer cochlear implant, Megan has seen improvements in almost every area. She has even recently undergone a second cochlear implant surgery, so she will have another period of listening practice and adjustment to conquer. Though she still requires assistance in many ways and continues to adapt to new changes, she looks forward to becoming more independent and living her life to the fullest.
Megan enjoys drawing, reading, writing, spending time with friends and family and horses. With a B.A. in Writing and Literature, she currently works as a freelance writer. Throughout her trials, Megan’s church family has been of great support and encouragement with their countless prayers and visits.
Ultimately, Megan relies on the Lord: “My faith gives me hope, because I know that I am fearfully and wonderfully made, that God cares about every aspect of my life, that He is with me in my suffering, that through Christ He has conquered suffering through His own death and resurrection, and that through Him I can live an abundant life, whatever my circumstances.”