Wednesday, May 11, 2011

To Mr. Micawber, With Love

(This is a re-post.  Google lost the original one when Blogger was shut down.)

Seventeen years ago today, in what would become the first of three surgeries, Mr. Micawber (my husband) had a golf-ball sized tumor removed from the hearing/balance nerve on the right side of his brain. That first operation lasted 14 hours. The effects will last his whole life.

He had a couple of great neurosurgeons. They were very open about the immediate consequences of the procedure: loss of hearing, loss of balance, possible facial or eyelid droop. So in that sense we knew what to expect.

But there were so many things they didn't warn us about. The depression. The cognitive difficulties. The anger. The chronic fatigue brought on by a crippled brain working overtime. The permanent disruption of vision. The constant vertigo. The surprisingly disturbing tinnitus that would persist even though the hearing on that side was gone. The sense of being isolated from a healthy, non-understanding world.

A year after the surgeries, a friend of ours broke his neck in a diving accident and ended up in a wheelchair. Mr. Micawber sometimes said he almost envied our friend, whose injuries were at least obvious and recognizable.

The problem is, Mr. Micawber looks good. (I think he looks great. But I'm prejudiced.) He looks healthy and normal.

Sure, he's got some very large scars on his scalp and behind his ear, but they're mostly hidden. Like his disabilities.

To get an idea of Mr. Micawber's life, cross your eyes a bit. Now try to function like that for a few minutes. Walk around, do a few minor tasks. It's hard, because you can't see straight, and your brain has to work harder to make sense of the images it's receiving. Imagine living like that all the time.

Now go outside and spin around as hard as you can. Stop suddenly, and try to walk a straight line. Again, it's hard, because you're dizzy and feel like you might fall down. Imagine that dizziness, that feeling, never going away.

Now imagine that there's a road between your brain and your tongue, and every word you speak has to travel down that road before it can come out of your mouth. But there's a wall across the road. Not to mention a series of speed bumps. So that even when you know exactly what you want to say, the words get stuck or delayed. Sometimes they make it out; sometimes they don't. Sometimes they're not the words you started out with. But nothing you can do will break down that wall.

And if all this weren't enough, imagine that your two ears are two speakers. One is permanently broken, and the other one has been turned up to maximum volume and can't be turned down again. So, depending on the source and type of the noise around you, you often can't hear what's going on.  Or it's unbearably loud.  Or a meaningless jumble of sound. All the time.

There's more, but I'll spare you. I admit it's kind of depressing. Even family members don't really want to hear about it, and don't quite get it. They'd like Mr. Micawber to suck it up and get on with his life. What they don't see is that he struggles every day to do even the basic things most of us take for granted: see straight, walk straight, stay upright, hear clearly, speak easily.

It might have been easier for Mr. Micawber if he had met an IED in Iraq, or been a professional football player with obvious head trauma. His symptoms are pretty much the same as those of TBI (traumatic brain injury). But he's not a returned soldier or retired sports hero. He's just an average guy who had a brain tumor and whose whole life has been turned upside down by it. And who looks too good on the outside to qualify for any kind of help.

So it's kind of a bittersweet day for us both. Don't get me wrong. I'm enormously grateful he's still alive. And he can still walk, and talk, and see, and hear after a fashion. But I do wish his life could be a little easier.

I love you, Mr. Micawber. Happy Surgery Anniversary. I think.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~


  1. Wow, I had no clue, particularly because he knows so much about bikes. I assumed he was out there riding every day, and now I wonder if he's able to ride at all.

    I identify with some of the symptoms you've described because one of my brothers was born with crossed eyes. He had several surgeries, but he still sees in one dimension, and things like stairs present a challenge because he has no depth perception.

    I also am touched because I, too, endured a life-changing surgery that corrected an injury but created a whole new set of rules. I, too, annually celebrate, sort of, the anniversary, because the crippling pain from the injury is gone, but the side effects caused by fixing the problem will last the rest of my life. Like your husband, the depression sometimes is worse than all the rest combined.

    Yet still, I read stories like this (or follow a limping man up the stairs or while cycling get chased up a mountain and passed by a one-legged man) and realize how good I've got it. I can walk, I can ride, I can take pictures, I can create. The best thing of all is being loved by someone who accepts me the way I am.

    I’m thankful Mr. Micawber has that last blessing, too. It makes all the difference in the world!

  2. Thanks so much. Mr. M. did try very hard to get back into riding after the surgeries. (He used to do a bit of racing before we got married. Nothing high-level.) Despite the loss of balance he was pretty determined. But between the vertigo and fatigue I don't think he ever managed to go more than 10 miles or so. We sold our sport tandem too.

    Then last year he got a pulmonary embolism (actually several) that pretty much destroyed his aerobic capacity, so now he can't ride at all, except to hop on the fixie and run local errands within a couple of blocks. He literally gets exhausted after just a few minutes. He's waiting for the lungs to come back but it's not happening very fast.

    He still loves reading about cycling, and building bikes (mostly from thrifted frames these days). And of course he takes care of my road bike and my Goodwill cruiser.

    Thanks again for your understanding comments.

  3. Mrs. M, I appreciated your post about your husband's struggles. My sweetheart has struggles, too, but because there's no outward sign of disability, it IS hard. For my sweetheart, the struggles are mental/emotional primarily, but with accompanying physical manifestations. Chronic depression is not much fun to live with, nor is PTSD.

    My father died 6 years ago from melanoma that had invaded his brain. We first learned that it was in his brain when he collapsed during the night on a trip to the bathroom. Mom thought he'd had a stroke. After an ambulance trip to the hospital and emergency surgery, we learned that he'd had a tumor and blood clot as big as his fist inside the right side of his brain; if he wouldn't have gotten to the hospital then and there, he wouldn't have lived past that day. As it was, he was with us for another year. He had a 2nd surgery to remove another tumor, but after that the seeds of new tumors in his brain were so numerous that surgery was no longer an option and Dad accepted that his life was coming to an end. He died at home with my mom caring for him right up to the end (with some in-home hospice help). He was a month away from his 68th birthday. I remember visiting Dad in the hospital when he was recovering from the first surgery and how he told me that he had a whole new appreciation for those who'd been through a stroke or other brain injury because recovering from the brain surgery he'd had was the hardest thing he'd ever had to do. My dad was a hard worker, strong, and never sick a day in his life until this happened.

    My eldest daughter, who is 34, has fibromyalgia, along with a couple other health issues, and has her good days and her bad days. On the bad days, she can't do much of anything. As with your husband, people don't understand. They think she should just suck it up and get off the couch and DO something. If it were only that easy!

    I think it's called the "new normal" after a life-changing situation or condition. It's NOT easy, for your hubby or mine or my daughter or others who've personally experienced these things. Nor is it easy for those of us who aren't disabled, but love them and live with them. We have to accept the changes in them and the impact those changes have in our relationships and activities as well.

    But one thing I do know--in all these things, there is grace for each moment as we trust in the LORD. His strength is made perfect in our weakness, for when we are weak (and oh, how weak we are!)then He is strong. Nothing that happens to us or to those we love catches Him by surprise. As I say that, we are waiting for my dear 10 yr old grandson Derick to have a lump removed from the inside of his cheek this coming Wed--worst case scenario is cancer, but we're hoping that it will be nothing. We're also praying for 7 yr old grandson Easton who learned in 2010 that he has Perthes Disease, where the hip bone dissolves, then regrows--praying for regrowth that will allow him to avoid future surgeries. God knows and He has a plan. In all these things and more, we can trust Him, because He loves us and cares for us. That doesn't mean it's always easy or that we never get scared, but there's always the assurance that we are not alone and that He is faithful.

    My prayers are with you! Take care and may the grace of our Lord Yeshua the Messiah be with you!

  4. I just read this after noticing the topic in the sidebar, hoping "brain tumor" was some kind of metaphor for something not so life threatening / life changing. Please tell Mr M I think he's enormously courageous to keep on keeping on through all those adversities.

  5. Oh... my.... Dear.................

    Many, many gentle hugs, to both of you...

  6. I just came across your post. I have a colleague at work who has a brain tumor, had surgery and chemo. I don't know how this is still affecting his brain, because he never talks about it.
    Thank you for explaining your husbands difficulties. I now have an idea.

    My colleague tries to act like everything is normal, but we notice that he has problems (speaking, understanding, reacting, he forgets things very often, is unreliable, tired, depressed ...). I've always thought that he should give himself a rest (work part-time at least).

    He is 30 years old an a teacher. Do you think this is even possible? Don't get me wrong. I don't want to take away his job but wouldn't it be better for him (and the students and teacher colleagues) if he slowed down a bit? I can see how he struggles with the basics, and teenagers are so demanding.

  7. It's 4 am in Sweden and I can't sleep so reading your blog. Felt overwhelmed by sadness at what you and the other writers are going through. Makes one feel very humbled. I have lost a few very young friends this year. Life is so precious. All these cancers invading our lives...Please keep an eye on electromagnetic forces in the home, eg. telephones, wireless internet, cell phones etc. There have been a lot of studies done by honest researchers but the results are swept under the mat to support big business. Our modern lives are killing far too early and I pity the children who are being subjected to so much technology and absorbing into their growing bodies. My very best wishes to you and yours, may your Christmas bring peace and joy...and maybe a little bit of St Johns Wort might ease the depression (keep off the nasty meds) Hugs Eva.

    1. Thank you, we are very careful about electronics. We gave up our microwave oven for this reason, and use cell phones very rarely. And we don't use ANY nasty meds - I don't think they are the solution. :)

    2. Thanks Sue. Your story really touched my heart. You write so beautifully, with such feeling. Your story about Mr M should be spread and shared. It's perfect for Readers Digest. I plan to send it to every person that emails me to groan about their petty problems. I add the link for Swedish Researcher Bertil Persson on electromagnetic effects. Anyone can use the google page translator to read it in English. An eyeopener.

      I admire yours and Mr M's courage...Hugs.

  8. Teach him to knit. It absorbs you and helps to 'turn off' parts of the brain to help ignore outside world. Also done sitting still - as a fellow sufferer from tinnitus and vertigo. I am sure mine is nowhere near as bad as Mr Micawber's but it is amazing how much it has helped me.

    1. I did try teaching him to crochet (at his request), but it didn't work out too well. :)

      I am so glad that knitting has helped you.

  9. Hi I am just disvovering your blog via a mutual interest in crochet. I relate to you on another level via this post, my husband has suffered chronic pain our entire married life with more and more health issues as the years progress , invisible to the observer. I feel for you both coping with these things in themselves but also how disheartening it is to be surrounded by those who don't get it, they can't even imagine what your husband is dealing with but rather than being compassionate they become judgemental. By lacking understanding they build walls around themselves. Best wishes to you both

    1. Thanks so much - you get it! Mr. M also deals with chronic back pain. Best wishes to you and your husband also - I feel for you both.


I love comments! Speak on....