I married a brilliant man.
Not to brag on him or anything ( okay, yes to brag on him )… He has an Ivy League degree in bio-physics. After working in a lab, he switched fields all together to work as a computer programmer in a start-up company.
The man scored a perfect score on the problem solving/logic portion of the GRE for goodness sake!
Just to keep everyone on their toes, he switched fields again and entered seminary. He completed a Master’s of Divinity and was working towards a Master’s of Theology (and eventually hoped to obtain a PhD), when the pain went from somewhat manageable* to debilitating when the nerve pain crippled the lower half of his body and consumed the rest of his thoughts.
*Somewhat manageable here means that his cluster headaches consumed him 6 hours of each day for approximately 8 months of each year.
He went from a brilliant diamond to a dulled spoon. And by spoons, I have a double meaning. Christine Miserandino wrote an article about The Spoon Theory of living with disability. Each spoon represents innate abilities, energy, knowledge, and memory that most healthy people have in excess. Those with sickness or disability, however, have a limited number of spoons, which they are forced to use sparingly in order to get through their day.
Thankfully, I am healthy and have unlimited spoons. Because this is how my typical morning looks: alarm goes off at 5:30 and I hit snooze a few times. Get up. Go to the bathroom, brush my teeth, put in my contacts. Get dressed in workout clothes. Start a load of laundry. Make coffee. Toast a muffin. Pour a glass of water. Eat breakfast. Check email. Read Bible. Push dishes in the dishwasher. Tidy bonus room. Do 30-45 minutes of exercise. Switch laundry into the dryer. Drink another cup of water. put out breakfast for the kids. Change into work clothes. Wash face, brush teeth, put on make-up. Write a list of to-dos for the family. Kiss everyone and leave for work.
Phew! I’m tired just writing it out!
In comparison, since this time last year Professor X has been stripped of his energy and abilities. Some days Professor X seems to only has four spoons for the entire day: One spoon to get up in the morning. One to take The Flash to school. One to feed Marvel Girl lunch. And one final spoon to pick The Flash up from school. If he needs to get out of the car, he pulls out his wheelchair. Because he can’t walk for more than 20 feet. And the rest of the day? Spent recovering in bed or on the couch.
It is hard to remember that on a bad day, I can do more in 30 minutes than he can do in an entire day.
And it’s tragic. Not only because my children don’t blink when they hear “Daddy can’t do that right now because he’s in too much pain”, but also because Professor X now must redefine his goals. He can’t remember to complete routine tasks. He forgets coupon codes. He can’t think his way through simple household problems. Finishing his PhD seems impossible with all of his energy fighting pain. It’s hard to even think beyond this week and contemplate what he’ll be able to do this summer.
In my years in graduate school, I learned to help other people’s husband’s disabilities (from stroke, head injury, etc.). Not my own.
And I really, really miss that sparkle in his eye as he redefined the quantum theory of physics or the nature of God with vocabulary that was far beyond my comprehension. But, I need to breathe. Pray. And remember, it could always be worse.