Monday 23rd January 2017,
The Liz Army

Lift with your head: the other 90% of my brain

lift with your head

Lift with your head: the mantra at my gym.

In the past I have viewed exercise as a chore. Repetitive weight lifting and mindless jogs on a treadmill were never my idea of fun. But I still have cancer in my brain–so I need to do something to feel like I am fighting back.

I strongly believe in the power of advocacy as an important role in brain tumor survivorship. But advocacy only stimulates the 10% of my brain. There are many other parts of our brains–parts controlling crucial functions like heartbeats, muscles, balance, movement, the respiratory system, etc.–that require stimulation and use. That is the part of my brain I am just now starting to put to use and challenge for the sake of healing.

Damage to the parietal lobe and proprioception

After my second brain surgery in February 2009 I was left with a bit of damage in the parietal lobe. The damage is minor, but it left me in the position where I had to relearn how to walk and balance.

Through physical therapy I was taught how to hold my body position and overcome a slight bit of hemispatial neglect. This comes naturally to me now, but there are some parts in my brain that were damaged will never be OK again.

The right side of my body will forever experience a different sense of touch. The fingers on my right hand that are typing these words along with my left hand will forever experience a completely different sensation as they tap letters on the keyboard. (It feels like an uncomfortable pins and needles sensation.)

The most damaged part of all is my sense of proprioception–the awareness of my body in space. This is the hardest sense to explain. Everyone is aware of the five senses: see, hear, taste, smell and touch. Just by closing our eyes and trying to walk around a room blind we can imagine what it would be like to lose our sight. When we have a cold we can imaging what it is like to lose our sense of taste and smell. Put noise-canceling headphones over your years and you know what it is like to not hear. When you sit on your leg for an extended period of time you might know what it is like for your foot to go numb, and you temporarily lose your sense of touch.

There is no equivalent way to demonstrate for you what it means to lose the sense of your body in space (proprioception or kinesthetic sense). The closest thing I can think of is when you are sitting in a stationary object (like a car), and the car next you to starts to move and it makes you think that the car you are in is the one moving. This is an unnerving sensation because you are not moving but your brain is tricked into thinking it is moving because of what you are seeing, and this makes your body actually feel like it is being moved.

Have you ever heard of an “out-of-body experience?” People usually attribute out-of-body experiences with something related to the supernatural, but for me I have out-of-body experiences quite often–my seizures start off in that fashion. I feel disconnected from my body, hands and limbs, and I begin to feel as though they no longer belong to me. Suddenly I feel like a torso with no limbs and I start floating through the air, moving deeper into a room with my body staying put far behind me. This is fucking crazy, but I know it is my brain that makes it happen. Now when I hear of people having out-of-body experiences I think that they are having a seizure and they just don’t know it.

Here’s another example of the damage in my parietal lobe: my feet feel different. Without looking at it I know where my left foot is located. The right foot? I have to concentrate on its whereabouts and actually look for it to know where it is. The coordination required to travel up and down a flight of stairs has never returned to me: in the past year I have fallen down the stairs three times. I trip often. I run into things on my right side: doorways, walls, poles.

People without damage in their parietal lobe like to tell me that they too are accident prone. This annoys me. Sure, you can be accident prone. But I remember what I felt like before brain surgery. I was a 29-year-old adult. I had nearly 30 years to know what it was like to be me, in my body, being human and not perfect. And I know what it feels like now post-damage to the parietal lobe, and what it is like to have an altered sense of touch and body awareness. There is nothing someone can say that will convince me that I am just like them.

kicking the bag at Body Tribe

Getting my kicks

It’s play time

All that being said, you can imagine I feel like I need a bit of special care when it comes to exercise.

I tried working out about a year after my proprioception was damaged. Due to sensory loss in my right side I felt “off” when I was running. When lifting a weight I had to look at myself in a mirror to make my right side do what I wanted it to do (and to make sure I was lifting safely with proper form).

I would exercise and then I would stop for months. I don’t blame this all on weird body stuff–most of this had to do with my own motivation and a bad work-life balance. And laziness. And confusion about how to live with a deadly disease. There is no guide to survivorship, especially no guide to surviving with a malignant cancer still in your body.

Goddamnit, this shit is so complicated. 

This past June Brett and I went to the Big Island of Hawaii and we ran around the entire island hiking, swimming, playing. It felt so good to be alive, experience nature and just… play. I also felt like I would have enjoyed the trip a little bit more if it wasn’t so hard climbing around the rocks just to get to a snorkeling spot.

Before that trip I thought I was putting off exercise because I should be taking life easy and not wasting my time on useless things. After that trip my motivation changed. If I were to live another three years, five years, ten years, well, fuckin’ a–I want to live! I want to enjoy and celebrate the only thing I will lose in death: this physical shell I have–my arms, legs, hands, feet (and the brain, I guess). I want to run around and see, smell, taste, touch. I want to play.

So I called my friend who was a trainer at some weird, alternative “gym” that focuses on movement and play. I didn’t know what that meant, but I liked that there were no mirrors in this gym and I had to learn and focus on my weird body parts and figure out how to get them to do what they don’t do naturally.

I am now learning how to work with my “damaged parts” (including that funky shoulder I had surgery on in March 2012). I learned that I really love the movement of boxing (not that I am good at it yet). I am getting stronger.

I don’t know where this will take me. I’ve never played a sport or competed on a team. Some people at the gym are talking about training to compete in a crazy, military-style obstacle course next year and they are encouraging me to join them. Then I see that there are rules about not doing certain obstacles if you have metal implants in your body and I think of the metal plate in my head and I get bummed because I’m not like all the other kids. I really want to get into boxing but I am sure my doctors would never let me get in a real ring because it’s not a good idea for a person with epilepsy to get hit in the head. (That’s fine, I can spar with a heavy bag.) But still… there will always be little heart breaks in my life.

Changing gears here… gotta do this for my own mental state…

BUT FUCKIN’ A–I am alive! One half of the people reading this blog are probably suffering from a glioma more malignant than my own. You are probably saying, “Fuck you, Liz. What I would give to be where you are right now–past your surgeries, past your two years on chemo, good scans showing no growth. Fuck you, Liz, and your boxing gloves and your push-ups and your husband who will make you dinner every night and your trip to Hawaii. Liz, you better appreciate what you have and shut the hell up.”

Thanks for putting me back in check.

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  • Your disease and after effects from brain surgery fucking suck. There, I didn’t agree with that last paragraph at all. I’ve got stage 4 lung, which was found by a tumor in my brain. I’m in remission now, but it still fucking sucks.

    • Liz

      Thanks, Melanie. It’s nice to get some sympathy.
      But stage 4 lung, dang–that’s intense! How is it impacting you now?

  • Ktgliomagirl

    Hi Liz- good for you! Beat the crap out of that punching bag!! Have you read, “left neglect”?

    • Liz

      No, I haven’t read “Left Neglect.” I will look it up!

  • Chris Hardy

    Liz…. I just stumbled upon your blog on Zite…. My brother suffered from cancer when he was young…. I train a few female fighters in Orange County. If you are ever down here I would be happy to do some pad work with you! Keep fighting!

    • Liz

      Thanks, Chris! And thanks for telling me about Zite. I just downloaded the app for iPad and am now addicted to getting my news from it.

  • Patrick Hof

    Great blog post Liz, and I can totally relate. Fortunately, what is left from brain surgery for me is by far not as bad as you describe it for yourself (see my latest blog post about the loss of muscle memory). I’m totally into calisthenics / body weight exercises right now, and it does me plenty of good. I’m using Mark Lauren’s “You Are Your Own Gym”, which I think is great book and training guide for everyone, regardless of fitness level. But whatever you do, the most important thing is to have _fun_ doing it! So keep up with your training and say hello to your heavy bag from me by hitting it _really_ hard.

    BTW, apparently I can’t comment from my Disqus account at the moment…

    • Liz

      I read your post and I could totally relate!

      Sometimes I think no one understands what I am dealing with, then here you come along and write almost the exact same just a few weeks earlier.

  • Emily Henderson

    I think you are awesome and you give me (and my husband- who has brain cancer) hope & inspiration…and now I will go nag him to start working out again!

  • i too was diagnosed with a malignant brainstem glioma in 2012 soon after i had my daughter . and letme tell you i can relate 99%. i dont have seizures. but i would like to stay in contact .

  • Mystic-Muse

    Hi Liz,

    I also had a tumor in my parietal lobe. I have symptoms very similar to yours. I will forever have to be careful walking down steps. I also have problems with writing… my my g’s become d’s…I eliminate or add letters or words…. The tumor damaged my speech area, so I slur or forget words. Because of the location, the tumor pressed on my occipital and temporal lobes, I had surgery, chemo and recently radiation which I am told would make my symptoms temporarily worse and every day I wake up like I have a hangover (I had radiation in August)

    But don’t give up!! Those neurons (maybe not all of them) will reconnect. After my surgery I forgot my black belt forms. Every day, I practiced using muscle memory and whatever cognitive memory I had left. And now after persistence I remember all of them! We all have neuroplasticity. Use it, no matter how bad it gets. I have good days and bad days, but I always picture those neurons reconnecting no matter what!

    Carpe Deum!

    Liz, you are an inspiration! So glad someone is advocating for us!