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.
I really, really needed to read this today. Thank you. I’m the one who’s falling back on my spoons a little more than usual and I think reframing the issue that way will help me have more patience and kindness. I’ll be sharing this with my partner, because it really hit a chord.
This makes my heart ache for you, your hubby, and your family … I will pray for you too.
You are lucky to have one another. I hope that someday he may find relief from this unrelenting pain.
Wow…praying for you. I’m watching a friend and her husband go through something similar right now. And, I’m on my own journey as I’ve been experiencing undiagnosed pain since November 2009. I’m spending a lot of time on the couch…and it’s hard to explain to the kids that Mommy wants to participate…I just can’t.
thinking of you both…
That is one full plate! I am sending prayers of strength for you and your entire family.
Being the caregiver is tough. I’m in the middle of reading Gail Sheehy’s new book “Passages in Caregiving”. It’s a drop in the bucket compared to real life but it’s a bit of encouragement on the tough days.
Hang in there.
It’s amazing to me that in this age when it seems even a cure for cancer is not too far along the road, we still can’t cure migraine or cluster headaches.
I can truly sympathise with your husband as I have suffered extensively from both kinds of headache. There were days when I thought I couldn’t even get out of my chair because the pain was so intense. Thoughts took a long time to navigate their way through the fog enveloping my brain. I used to want to dig a hole into my skull and claw out the pain. I thought dying would be better, even though it would mean leaving my children and husband behind.
Strangely enough, I could still force myself to do daily tasks like feed the baby & toddlers, change nappies, and watch them well enough to keep them safe.
I do hope your husband’s doctors can find, if not a cure, a way to manage these awful headaches better.
The fact that you make time to keep up with your blog is probably good therapy for you. I had to read this post three times to get to the place I could actually comment. You and your husband are blessed to have each other and support each other the way you do. Pain makes the everyday things so hard to do. I feel for your husband’s pain and for your full load.
yes, it could always be worse. Yes, we all have blessings. God is good–even when it doesn’t seem like it. However, I want to give you a great big hug right now and tell you it’s all going to be ok. . .I just wish I could make it ok.
I think these situations are just as hard for the caregivers–I hope you’re finding some time for yourself so you don’t burn out. Your plate is full. I never knew the whole story about Prof. X until reading this post. How hard it must be to watch someone go from gifted to crippled with pain. I’m including you in my prayers, CC.
I will pray and pray for you. Thank you for sharing more of your story. I think both you and your husband are pretty heroic.
I have read your blog for a couple of years now and your story still makes me cry. Even if he had not had all of that education it would still be so heart-wrenching. I wish I could send some magic your way to make it better.
I also want you to know that my 3 yr old daughter will begin speech therapy tomorrow. Thank you for such wonderful resources. It makes this so much easier and I was not as shocked/upset because I do read your blog.
What a sad, sad story. It’s hard to see someone so brilliant reduced to such paint that thought is almost impossible.
Is there an end? Or is this something that will keep going the rest of his life?
I wish I was closer, I would be there to help you in a heart beat.
Oh, and I love your new apron, but I couldn’t find a comment box. Thanks for the review I’m going to check out their website!
I’ve read this three times now since you posted it CC. Praying for Professor X. Praying for you. Praying for the kids.
praying for you both…
oh sweet girl! I’m praying for you and your family! And like someone else said, I do hoe you are getting some help and some time for just you to regroup!
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