This past week has been one of the biggest roller coaster whirlwind of emotion and experience in my life. I am still trying to make sense of it all.
A week ago I went to the Johns Hopkins Emergency Room because a tingly/numbness sensation that had started in my fingertips months ago had spread rapidly over my torso to the point of covering the majority of my body. This wasn’t something I had tried to ignore when it started several months ago, it had just never reached the level of concerning that brought me to the ER last week. I had tried to get answers from my primary care doctor but that’s a whole other story.
So much can happen in a week. A week ago I was admitted to the neurology unit at Johns Hopkins after they did an MRI of my spine and found some swelling. There were more tests. Another MRI found swelling around parts of my brain. A spinal tap left me feeling completely wiped and exhausted. There was so much blood work, a bad IV, and so many questions still unanswered.
A week ago everything changed. Some of these changes are relatively small. Like cold showers, I am taking cold showers now that a week ago I wouldn’t have been able to stand in for even a minute. I need naps now during the hottest parts of the day because I am tired and my brain feels real snug inside my skull. Yet, some of these changes are huge and I am having some big feelings of loss. I’ve lost some of my body’s abilities and energy levels. I am having a real hard time with the loss of coordination and dexterity. It is really difficult for me to be faced with so much unknown. I don’t feel confident about what each next step is, even just the physical next steps of one foot in front of the other.
A week ago I still had enough sensation, feeling, and confidence in my body to pull out the forge and blacksmith for a couple hours. Today, being in the heat for even ten minutes drains what feels like every last bit of energy from my body. I am not as sure on my feet and now sometimes need help getting around. I can’t play the ukulele with the same coordination and dexterity as I did a week ago.
How much of my life will change because of what is happening to my body? I’m not even certain exactly what is happening to my body and neither are the doctors though they said they think that I have multiple sclerosis. Will I be able to do the things I was doing a week ago again? Will I be able to go on the road to vend and teach with my wife? Being in the car is hard for me now, it used to be a place of comfort and solace but now I am not supposed to drive and all the bumps on the road make my head hurt. These new boundaries and body limitations are a drastic change and I am having a hard time processing and accepting them.
However, this whole experience is forcing me to live in the moment, this now. Not yesterday and not tomorrow, because it is not about what I have been able to do or what I may or may not be able to do in the future but what I am capable of doing now, in this moment. There is some sort of freedom in all this. I have to live the moment to the fullest because I may not be able to tomorrow, or next week, or next month. Staring into the face of the unknown I refuse to walk down this path in anger and fear. I don’t know what tomorrow will bring but I do know that today I am feeling grateful and blessed for all the love and support from family and friends