Babies constantly amaze us as we watch them grow. Each ounce and step of development is seen as magical. Their first time rolling over, crawling, standing… these moments are how we all started out. It is such a satisfactory thing. We all spent our first years learning the basic skills that would fuel us for the rest of our lives. You have them, the person sitting next to you has them, even I have them.
You gain these skills and think that they will stay with you forever. In November of 2016 I lost my ability to sit up on my own, walk far, bath myself, stand for more than minutes, and even support my own head. My muscles wasted away. I went from being an independent teenager to needing help with even the most basic of needs. I digressed from 17 to the wee ages of a baby. I needed care and help with everything. I soon relied on a caregiver around the clock. I was essentially needing the care that I needed 16 years ago, as a baby.
To lose all I had worked on in life was not just scary, it left me petrified. I had to use a wheelchair and have someone adjusting my head and making sure my feet were up right. However that was not satisfactory for me. Not one bit. So I started using my arms to push the wheels. I worked on wetting half of my hair in the shower.
I became so tired and sore. Each step of progress I made was equally comparable to the increase in fatigue I had. As I became more skillful in moving myself around, I would be so tender in my muscles. One night I was laid out in pain. It covered my whole body. I couldn’t do anything but cry and try to breathe. I wanted to just lay there and let the pain go away. But I had a support group behind me.
So I continued. And then, I walked. I gripped both hands on my walker with all of my strength. I could hear all of the statements of medical advice from doctors in my head. And I walked. It was a moment that was celebrated. I stood, I bathed myself, I put on my own clothing. I took steps of progress. Just like the first time in life that I rolled over or crawled.
I am walking. Walking with pride. My walker giving me support as I rest my pumps and oxygen tanks on it. And this is satisfactory to me. Each step of this development and work is proving just how powerful humans are.
Even though we do not have a name for this neurological condition that’s affecting my body, my family and I are celebrating. It is sort of hard to think all of this through logically. However that’s life, confusing and beautiful. No matter how confusing it may be, we take it as a miracle.