Grin and Bear it

You know the saying "grin and bear it"? Well that has become my motto since being diagnosed with a tumor on my pituitary.

I keep hearing "but you look fine!". I wonder what people are expecting me to look like? Drooling on myself? Depressed? Angry? Weeping? Because I am all those things (I try to keep the drooling to a minimum), but only at home where I can hide it. When I am in public, I grin and bear it.

At this point I can slap on a smile, joke and laugh for a few hours, max... on a good day. When I get home, much like the way I use to crash after a long Marathon training run, I am wasted from the effort. The effort not to vomit while choking down food. The effort to smile and say "everything's fine". The effort to pretend that I'm OK with my body being completely hijacked. The effort to not start drinking wine in the morning.

During this experience I have gained 25 lbs in a rapid, out of control manner. This is a typical part of Cushing's Disease. It is also typical for the weight to focus on the face and belly...like I'm 6 months pregnant. It is also typical that I now have facial hair yet I'm loosing it off the top of my head, really not a fair trade in my book. It's typical to have horrible acne, it's typical to have difficulty sleeping, memory loss and burred peripheral vision and nausea and headaches and pain. I look like a grumpy, balding, bearded pregnant lady. And at the end of all this, the only out is brain surgery. There isn't anything I can do to help the symptoms or quell the fear, all I can do is grin and bear it.

People want me to "think positive". I can't help but think that is either because they don't know what to say (believe me I get it, what do you say?) or is it because people are incredibly uncomfortable with mortality? I am actually a big believer in the idea that you can make your own hell or happiness all based on your thinking, but there is also the truth of what I am dealing with. This is unlike anything you or I have ever imagined. Until you have actually been faced with a brain tumor and eminent surgery (no one wants to think about having their brain poked at), you really don't know what it is like and thinking positive isn't always possible. The illness is with me constantly and the surgery hangs over me, and those I love most, every moment of every day. This isn't like when my gallbladder up and died and needed immediate removal. This isn't like when they placed my organs in bowls to pull my baby out via c-section. This is my brain. The risk factors are real. No amount of "positive thinking" is going to help as I set up a will or write the suggested 'goodbye' letters to loved ones. This is different.

It isn't that I don't love everyone's letters and messages that are meant to cheer me up, they really do help, but it is the reality that the game of "what if you only had a few months to live..." never resonated, really resonated until it became a true possibility. Now here is where you are all thinking 'no, don't think that way!' right? Believe me I am planning to be on being around to make inappropriate jokes and be an annoyingly affectionate mom to my son for a very long time...but again, the risks are real and until you live it in the vivid technicolor way I am, you just won't understand.

It feels like I'm at mile 22 of a Marathon, the strain about to break me. The end is in sight, yet each step, each moment feels like an eternity. And like being at mile 22, I just want to escape...so I don't leave the house much anymore. Menial tasks of cleaning or laundry are daunting much less trying to act normal, which isn't working out very well by-the-way, my memory loss makes me a total asshat, but sometimes it is a necessary evil. Yesterday I had a big day, I had to fake it literally all day in order to work. I swallowed a handful of pills and focused on being bright and cheery. By 8:30pm, I suddenly felt like I'd been hit by a Mac truck.  My ability to 'grin and bear it' is fading fast.

It seems to be getting more intense week by week. Symptoms worsen and I try to feel good enough to get out of bed and make my son breakfast. Someone said that my fear was contributing to my son's anxiety. My son just turned 10. While I do have fear, intense panic attacks in fact (another fun side effect of the abnormally high cortisol levels), I have never been a person that lived my life in a place of fear, in fact I usually use that feeling to launch myself into something wild and new, I use it to my benefit. So is my fear adding to my son's anxiety, maybe. Or maybe he is a young boy who rightful has fears over the possibility of losing his mom. I don't know about you, but I never had to tackle such a scary subject when I was 10. Even as a 38 year old woman, I crumple at the idea of losing my mom. Maybe it would make people more comfortable if my son would just grin and bear it.

This post feels a little like a Debbie Downer, but just as there is the ugly, snot crusted, sweaty side to running, so too does this experience and since I never shied away from sharing the good the bad and the ugly of my running exploits, why start now?

-Cheers from the Vivác Winery Family!
www.VivacWinery.com