DON’T GET BANGS and other things to know in case you get a brain virus

Image“Do you realize the person in this house with short-term memory problems is also the person who put away most of the stuff from our moving boxes, and now is the only one who knows where everything is?”

I would tell you how my darling husband John responded, if I could remember.

The last time I posted here, I was brimming with a hopeful excitement about a future where I could lounge on a then-unidentified couch in a similarly unidentified home in a new city. Now I lounge on a fully identified couch in our new condo while my cat sits in the window enjoying the fog obscured view of San Francisco.

As we anticipated, life is different – the schools, the parking, the restaurants. What I had not expected way back then, was that I would be different. The city didn’t do that though. My brain did.

While I am in the process of forgetting where I’ve put our belongings, I am also recovering from a bizarrely inconvenient, temporarily debilitating virus that came out of nowhere and attacked the very brain I had become so attached to. Sure my brain was not much help in high school Algebra, but it’s gotten me out of some sticky situations, and I had woefully under-appreciated how, for 38 years, my brain helped me walk, and talk, and touch my nose, and remember what movie that guy in that one commercial was in, and also do basic addition and subtraction if the moment absolutely, positively necessitated it, and nobody else was there to handle it.

It was Valentine’s weekend. John and I had packed up our offices, and said “see you later!” to our friends. We’d found a new place to live, and were readying our family for the move. We even tried to go away for a romantic wine country getaway that was cut ridiculously short by what I thought was a run-of-the-mill cold turned piercing ear infection. I was dizzy and nauseous and subsequently and sadly not at all interested in wine or romance.

Things get fuzzy for me at about this point in the timeline. Somewhere between, “Oh, I think I’m coming down with a cold,” and “garble garble non-sensical slurry garble,” John took me to the hospital where I was admitted, and soon sent to the stroke unit. My brain became the focus of a team of neurologists and infectious disease specialists. I couldn’t walk or eat, and I was slurring terribly. My dexterity was shot; I couldn’t touch my nose, use my fingers, or pass the same impairment tests used at field sobriety checkpoints. My cognitive functioning was on the fritz and I was showing signs of memory loss. The orthopedist made an appearance too, but he wasn’t as interested in my brain as he was my knee that had been dislocated in the ER during a lumbar puncture.

A cadre of tests eliminated stroke, brain tumors, ALS, MS, Lyme Disease, and Gullain-Barre syndrome, among other things.

I vaguely remember a young woman fastening electrodes to my head for the EEG and the loud whirs of the MRI tube. My brain was swollen, and not in the fun cartoony way that should have actually made me smarter.

John slept on a cot at my bedside each night, and I spent a few days with a pair of his (clean) running pants wrapped around my eyes to block any and all offending light whether it was from a crack in the blinds, or the glaring rays of fluorescence sneaking in under my hospital room door.

John also spent the first few days of my hospitalization sitting with the news that I might not make it through this illness- a fact I was not aware of until I was home from the hospital two weeks later, eating a Jell-O cup in bed. I had a virus, and it was either going to get better, or it was going to get worse.

I’ve lost huge chunks of memory from the first five or so days in the hospital, with only hazy recollections of voices, and faces, and discomfort, and apologizing to the nursing staff for the unpleasant things they had to do to keep me from getting bed sores. If I was going anywhere, the lift team was involved. The lift team is made up young, strong guys who are there to lift you if you can’t do it yourself. I apologized to them too.

Finally, I started to get better, which is better than getting worse.

The one good thing about your brain causing the hitch in your giddy-up, is that the very fact it’s malfunctioning, keeps you from truly realizing what a pickle you are in.

I may not have fully realized the badness of my situation, but I could still kinda think, and started to hope that I would emerge on the other side of this thing with at least something to show for it.

“Perhaps, there is a lesson in this,” I thought as I lay there immobile, “What is it?  Be nicer? Don’t stress about dumb stuff? The wine country is dangerous? What is it?”

All of those things are true. But also:

  • Our time here is short and there’s a lot to do, which is frustrating when you really can’t do a lot as fast as you would like. Do what you can.
  •  But you can’t do it all. Choose wisely.
  •  Don’t ever get bangs. On the off chance you are growing out those bangs at the exact moment you end up in the hospital with limited use of your limbs and zero dexterity, your inability to keep the bangs out of your face will consume you. Your world will have shrunk to the exact size of your hospital bed, and there will be some moments where it feels as if it’s actually shrunk to the size of your wayward bangs. You will tell everybody who happens into your tiny world, that even though you have a mystery virus, and you’re hooked up to machines and tubes, your top complaint of the day is your unwieldy hair. The occupational therapist who successfully harnessed my gnarly mane, bangs and all, into a lovely braid, is to me, one of Earth’s top people.
  • Never keep underwear at home in your dresser drawer that you wouldn’t want someone to bring you in the hospital, because that is the exact underwear that will be delivered to you.
  •  Nobody goes into the healthcare field for the glamour of it. Because, unless they are going to the black-tie Healthcare Workers Gala in a hotel ballroom on a balmy May evening, there is just no glamour. None. Not any.These healthcare types are with us in the trenches during some of our darkest and ugliest moments. My pastor husband and I often discuss what it means to have a sense of call, which is what finally made him take the turn from a business guy in a suit, to a reverend guy in a suit. Callings aren’t just for pastors though – people are called to all kinds of professions that defy logic, like teaching, and law enforcement, and whatever job it is that puts a person at the other end of a hospital room call button at 3:30 am.
  • Gratitude is hard (especially with hair in your face) but it’s good for you. I’m not just thankful for being on the intermittently bumpy road to recovery, which I am, but I’m forever thankful to God for my amazing husband, kids, parents, family and friends and the hundreds of people who reached out, prayed, made a meal, sent flowers, took care of the boys, sat at my bedside patiently listening as I slurred and repeated myself, or helped us out once I finally came home and clumsily climbed into my own bed. The more gratitude I can find in a day, the better I feel.
  • Save yourself the brain virus, and *skip the wine country. You can drink wine anywhere.

*I fully acknowledge the Wine Country, and the fine people of Sonoma County California did not give me my brain virus.

Today, I’m two months out of the hospital and off the walker, one month past my last bout of vertigo, about 20 hours since my last headache, and hopefully moments away from totally re-gaining the rest of my short-term memory and ridding myself of the overwhelmingly pinchy feeling that comes when there’s too much input into my poor addled brain. I did not emerge with any cool superpowers, as my wonderful, sweet, caring boys had hoped. I did get that squeezy brain up there from one of the nurses on the stroke unit, and that was cool.

This is me in my pants hat – perhaps the greatest medical invention of February 2013.hospital

43 thoughts on “DON’T GET BANGS and other things to know in case you get a brain virus

  1. Deborah Jones says:

    Hello Colleen,
    debbiejones of your Richmond VA fan club, with branches in Maracaibo, Brighton, and LA. I am so happy today to read your words and laugh and cry at them. So good to have the advice about underwear and bangs and wine. I plan to toast you with a glass of wine with Chip on my back porch, play a song for you and your family, and thank God for your healing and funniness. love to you from all us joneses

    • The Fulcrum Chronicles says:

      Wow, Wow, Double Wow, Debbie! Thank you for reading, and for your sweet note. The love, and prayers, and support I felt from your family – spread far and wide as they were – was incredible. I’m so lucky it feels our family has now expanded & we appreciate your reading, and prayers, and taking the time to reach out. Prayers and love right back to you! xoxo

  2. Cathy Gallinger says:

    Hurrah! The Fulcrum Chronicles are back! Glad you are making such a good recovery. Glad to see you posting on Facebook again. Glad you didn’t lose your sense of humor.
    You are our living example of how God answers prayer!

    • The Fulcrum Chronicles says:

      Cathy! Thank you so much for your reading and for your sweet note! I’m so sorry our planned lunch fell in the middle of this whole thing 😦 I really appreciate your kindness and prayers throughout the whole thing! xoxo

  3. Tracy says:

    Colleen, You are a true inspiration for me. I adore you and even though I haven’t seen you in many many years. I love our online friendship. I would love to give you a real hug someday however. xoxo, Tracy

  4. Linda Rosenthal says:

    I don’t know how much this post took out of you, Colleen, but your brain is still most extraordinary. What a gift to us. Thanks for a great article.

  5. Melissa Hourigan says:

    You have always been such an incredible writer. I will say however that this is one of the hardest pieces I have read. How absolutely terrifying and humbling to endure what you and your family experienced. I am so very thankful that you are on the mend and appreciate how open you have been with this experience. It is a great reminder to all of us that we can’t take life’s precious moments for granted. So thankful that you are able to write this.

    • The Fulcrum Chronicles says:

      Oh, Melissa, thank you! What a touching note, thank you! Oh, my gosh, with you and Tim’s own trials over the last year, I thought of you often, and your incredible bravery and spunk and positivity. So what you’ve said is really super special and meaningful. Thank you!! Lots of love to you! xoxo

  6. Katie says:

    What a blessing to see that “you” are back, your humor, wittiness, and gratitude are so wonderful. Short term memory is overrated! Hugs to you and praise for the pants hat! Love you! Katie

    • The Fulcrum Chronicles says:

      KATIE!! Where do I even begin with you? Thank you for everything x a million, and for being so good at fashioning a hat out of pants. Short term memory is pretty overrated – I didn’t even know there was so much stuff to forget. miss you & love you too! xoxo

  7. Sharon says:

    Colleen:
    You are an amazing person, writer, mother, friend, wife and I am so happy you are Alive.
    Thanks for these words of wisdom.
    Xo
    Sharon

  8. Patti Ransdell says:

    Nurses are awesome aren’t they? I’m so glad that you are back to your funny, sassy, sweet self. But I think you may have let Sonoma Co. off the hook a little too fast.

    Hugs to you-
    Patti

  9. Maureen Brown says:

    Colleen,
    I’m so glad you’re back! I have missed hearing your beautiful writing voice. Could this be your calling? I hope so. Keep writing so I can keep reading.
    XO,
    Maureen

  10. Connie Mueser says:

    Colleen: Clearly that part of your brain that makes for great writing is REALLY working well!
    Connie Mueser

  11. Marcie Van Houten says:

    Yeah! I’m so glad to read this. Now I must go through my underwear drawer. I busted out laughing on that one.

  12. Molly says:

    Sending love and gratitude, Colleen. I look forward to your posts as you continue to unravel the previous months and mine for learning and lessons we all benefit from, and continue to recover and move forward. We love you and your family!

  13. Sandy Cooper says:

    I was encouraged to visit by our mutual friend,Peter Alter. He was correct in assuming I”d love your blog. I wasn’t expecting to read about brain infections, however, and am walking away a bit concerned about my own recent bout of vertigo…especially since I’m in the process of growing out my bangs and was just thinking how I need to get them cut. Now, I’m equally concerned about THAT.

    I look forward to reading more. And in all seriousness, am so thankful you have made a full recovery from what must have been a very scary illness.

    Blessings,
    Sandy

  14. Laurel says:

    Dare I say that Colleen 2.0 is even MORE amazing than the original model? I swear I say this each time I read a blog entry of yours, but I seriously mean it this time. Love that the “old Colleen” is definitely back, but I’m loving the updates 😉 Waaaay better than the iPhone 4G for sure…

  15. Krista Bernasconi says:

    Colleen, hats (and running pants) off to you, girl. You’re incredibly gifted and I’m thrilled you’re on the mend. Love always, krista

  16. Lori Marshall says:

    Colleen – Your blog is wonderful. i can’t wait to read more. What a crazy ride you have been on. I hope everything calms down for you. There was a story in the NY TIMES magazine this past Sunday about a woman with a similar virus as you had. Terrible headaches. Slurred speech. Etc. Don’t know if you read it but it turned out she had a cyst
    on her ovary that caused all the trauma. The doctors removed it and she got better. May the coming summer months bring you and your husband and boys much calm! We look forward to seeing you at church on Sunday.

    xoxo
    Lori Marshall (Lily’s mom)

  17. fran says:

    I am adding “Clean out my underwear drawer” to my list of things to do this weekend.:) By the way, as the person who answers that 3:30 am call light, its really not such a bad thing that those are the memories your brain is refusing to fire back up…thanks for the wonderful insights, I really enjoy your fascinating musings on life 🙂

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