by Natalie Ledford
I have had the very unique and unfortunate experience of losing my voice…permanently. At first it was very subtle. My first awareness of the problem was the popping I felt behind my nose when I blew too hard into my children’s bagpipe that they received from their granddaddy. Then as I tried to read bedtime stories my voice became unsteady and weak. Air slipped out my nose as well, which also contributed to the discomfort. My husband complained that he couldn’t hear me and eventually, as it became hard to talk normally, I decided to see an ear, nose and throat specialist. His news was disconcerting …a possible neurological condition. I left with a foreboding of what that would mean.
I was referred to a neurologist but that didn’t get me anywhere. The office never answered or called me back. I decided to go to my primary care doctor and came home with a printout of her aftercare summary, motor neuron disorder. I had to look up on my own what the term meant, and I was shocked and distraught as I read. All alone, it was devastating news. I don’t recommend a doctor casually handing you a paper and leaving you to casually discover such bad news. Needless to say, the foreboding intensified although it wasn’t an official prognosis.
Thanks to some friends inviting us to an outdoor concert, we were introduced to a neurologist that decided to squeeze me in for an appointment. Otherwise, I would have been waiting for months to be seen. At the appointment I was poked and prodded extensively and then the verdict came back. Bulbar onset ALS. Earth shattering, soul jarring news. Not only was I facing vocal issues but complete helplessness and premature death. It was like a nightmare that I could not wake from, something I never anticipated. At the time, my body was very healthy. I felt very energetic and full of health but I was told that if I was lucky I would make it seven years, though some random people last even longer. (The normal life expectancy is two to five years.) The neurologist was actually very kind in how he told us and he recommended I get a second opinion. We went to Seattle for that and there the final nail was pounded in the coffin that held my hopes and dreams.
Len and I spent the weekend together in the Olympic peninsula at the ocean processing our new situation.
A dark cloud of despair enveloped me. Violent tears erupted from my eyes at random moments as I realized the path that lay ahead, and I grappled with the fear of being immobilized and eventually dying. I felt like my life was being stolen before my eyes and the hardest part was losing experiences with my kids. I did not want them to have to watch me go through this or experience the pain of losing their mom. What a bitter pill to swallow!
Having grown up in the Pacific Northwest, Natalie has a fierce independence and wild adventurous heart. Nat has always been a hands-on person with a love for life, beauty and celebration. She has a degree in horticulture and training in music, carpentry, interior design, floral design and life coaching. Natalie spent time as an intern at a church and went on several ministry trips to places like the Philippines, Japan and India. She was involved heavily in music over the years with several orchestras, choirs and worship groups. She has also dabbled in many things including beekeeping, welding, machinery operation, large quantity cooking and gardening. She loves learning and trying new things. She thrives by being in the outdoors and enjoys making music with friends, preparing and eating good food, contemplation and communing with God through prayer, worship, dance, and journaling, or as she calls it, musing. Right now she is writing music and poetry and is in the early stages of writing a book. She hopes to be healed so she can go on to do many more things…travel, beekeeping, starting a farm and training others in practical ways to become their best selves with life skills and inner freedom.
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