No one should. Ever.
However, I do.
My task is now managing fear of the unknown while trying to enjoy the life I’ve been given.
During my recovery from the brain surgeries someone told me, “Oh Heather. You’re so brave. I couldn’t do what you’re doing.”
Ugh, that comment still makes my blood boil, even years later. I get that she was trying to be supportive or caring, but believe me that isn’t the way to go about it.
I am not brave. I am not courageous. I wasn’t climbing a mountain or swimming with sharks for Pete’s sake.
I was trying to not die.
As I have written many times before, this blog is my safe space, literally, to get pissed about what is going on in my life now, usually my struggles and heartaches as I work to process brain tumors and Rare Disease. I will always be honest here and to myself. I owe myself at least that much. It’s not pretty most days; thank you to those who are with me on this!
But, changing gears just a bit, I am really excited for this year’s Rare Disease Day.
Each year since my diagnosis I’ve hoped and always wanted to plan something “big”. A few years ago I was able to hold a fundraiser and the money raised was donated to Global Genes and the PTEN Foundation.
That event was so incredible and I was able to have Jaana, my awesomely talented friend take photos of the event. It was such a great time!
Unfortunately, this year I wasn’t able to plan anything.
BUT, I do have something else going on to bring awareness for Cowden Syndrome and Lhermitte-duclos Disease and I can’t wait to show it to you all!
Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD. I always tend to wonder, “Is today the day I get diagnosed with cancer?”
I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days. My life now will never not have any medical/doctor type things in it.
I must remember to B R E A T H E through the anxiety….
I am still bewildered, even 7 years later, that I have 2 brain tumors and a Rare Disease called Cowden Syndrome.
I think many people get these words confused: sympathize and empathize. Or maybe I’m the one who does? What do you think of when you see the word sympathy? I feel sadness. Loneliness. It has such a bad connotation for me.
I would (safely) assume that many people felt sympathy for me when I got diagnosed with the brain tumors. And Cowden Syndrome. But now that things have “passed”, I feel forgotten. I crave empathy so much. I feel guilty when I “complain” about my lot in life now, but you know what? This is my blog. This is my safe space. I am not complaining. I am processing. I am explaining. I am working on not letting my feelings eat me up inside and making me sicker than I already am. I will write everything here that I need to. Period.
Not one single person (except maybe a certain one) gives a rip about what I am enduring now. OK, OK. I get it though. We are all struggling. Everyone has something. And, these brain tumors and Rare Disease are mine alone. But, when I get overwhelmed (as I did yesterday) – to whom do I turn? Strangers on the Internet who actually seem to care about me more than my “real life” friends? No one wants to hear it. No one now even empathizes with me and the financial and emotional duress I am under every single day. As I’ve mentioned before, some days I am able to work – on-call. My brain cannot endure working 2 days in a row. There is so much sensory stimulation and information that my brain is trying to process that after 4 hours, I am done. My brain is done. My entire body is done. I came home right after work and was on the verge of a panic attack. I took a Xanax and slept for 2 hours. I am overrun with stress and anxiety, and I am afraid that the more I must “push” myself (working) – I will make my brain worse. Or make the brain tumors grow. Do you know what I mean? I just felt like yesterday I was going to break. I wanted to break. I wanted all the pain to stop. I tweeted that if this was all my life has in store for me, even if I live the next 20 years, I think I will reconsider.
I fear I will be remembered as a statistic of brain tumors instead of as a human being. That’s one of my greatest fears. That, and dying alone.
I don’t think I’ll ever get used to having a brain tumor. I guess, that’s understandable right? I mean there are 2 foreign
objects things types of poison in my cerebellum that wreaks havoc on my life.
SIDE NOTE: I began to read the Wikipedia link on the cerebellum. I now feel like vomiting.
I work temporarily, on-call, and when I am physically able. I worked for several hours yesterday, and what do you think today entails? Resting. Reading maybe. QUIET. I cannot tolerate the TV, music, radio, podcasts, NOTHING. It’s so annoying. And, frustrating. I just want to live a normal (what’s that, right?) life and feel like a contributing member of society. It always goes back to the financial duress I am under every moment, and that I am unable to finance my life and support even my bare living necessities.
What happens to people like me? Where do we go? Are we forgotten always?
First off, HAHAHAHHAHHAAAA.
Secondly, this prompt is pretty accurate considering my mood today. I just spent $50 to fill up my gas tank, and my monthly credit card payment is now up to $250/month. Will anyone else be shocked when I cannot pay the bill anymore?
Thirdly, I could actually make a list filled of all the things that have shocked me these past 7 years. I won’t bore you with it though.
I’m sick. I’m pissed. Why couldn’t I have been approved for the damn disability?! I deserve it! I need it. I am entitled to it! I’m tired of complaining and I’m tired of struggling. All I pray for is financial stability and yet (if I live another 30 years) I don’t ever see that happening.
When I file bankruptcy, or am forced to file, that will only be a short-term fix for a lifetime problem. I can’t work as I once did. I can’t even make enough money to finance my life – the bare necessities even.
I don’t want or expect anything more than just surviving. And as it stands right now I’m barely doing that.
I never asked for these damn brain tumors (obvi) and they continue to ruin my life. How can I expect to heal when I’m chronically stressed out about how I will survive?!
Static cling? Static on a radio station? Static in my hair?
But, I can definitely say that my life hasn’t been static these past several years. The Internet says that static means lacking in movement, action, or change. My entire life has changed! My life now is moving in a direction that (still) paralyzes me with fear some days.
Brain scans, appointments with Endocrinologist, needing to schedule next colonoscopy and EGD, meeting with Therapist, figuring out how long I can avoid bankruptcy, and it goes on and on and on…..
Cowden Syndrome and Lhermitte-duclos Disease doesn’t give its folks a break! Your life will never be static again.
PS – Since you’re here, will you please visit my teespring.com site and consider buying a custom t-shirt supporting Rare Disease Awareness? Thank you! ❤
Here’s the dictionary.com definition of viable: Capable of living.
To be honest, since being diagnosed with 2 brain tumors and Cowden Syndrome, I do not feel capable of living. My life now (financially speaking) isn’t practicable or workable. I don’t have the capability to grow and develop because I have no money and keep postponing bankruptcy.
I could write every day about how destitute I am. I know I could also write every day about my blessings and hobbies (my Wordless Wednesday posts) – but my blog is my safe space. It’s my place to cry, scream, bitch, moan, whine, wail about being broke, alone, scared, terrified of my future, blah blah blah. About being pissed off that my life continues to be a struggle. About wishing I could catch a break. About hoping I can have some good things happen for me.