I used to watch a lot of movies and I used to be a very avid reader.
Since my brain surgeries those hobbies have gotten pushed aside.
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.
While I get caught in some deep depression most days, I know there are many miracles in my life. I could dedicate an entire blog to them. However, not today. I want to focus on my healing since my brain surgeries. I know it is nothing short of miraculous that I am alive today and able to walk.
Tomorrow morning I have my next brain scan.
Part of me feels like I just had one yesterday, and the other part of me feels like it was 10 years ago when I last had one. Such mixed feelings!
It doesn’t get any easier; it’s just different now.
I’m trying to kick up my exercise again, because surgery last month put a wrench in things.
crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)
I felt like a normal person! Albeit, for about 15 minutes. But, still I’ll take it.
Because then I remembered I have my brain scan next month because gangliocytoma. And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.
I guess this is part of what life entails, right? Little moments of breathing in between the big stuff.
Or in my case, the big brain stuff.
I’m having surgery tomorrow.
You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery. Never ever.
And, yet here we are.
For the record, thankfully it’s not on my brain or my breasts.
It’s time to say goodbye to my gallbladder.
Catch you on the flip side friends!
What other choice did I have? I couldn’t lay down and give up. I had to continue forward. But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!
It’s recovering from freaking brain surgery people! You do what you have to do in order to not die. You would have done the same damn “thing”.
PS: Don’t forget to check out my Teespring storefront!
I mean, it really does. But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things. I feel like when I have days like this (read: days that suck) I need to blame something: (see my list of things above). I don’t know why.
I guess because I hope I’m not just lazy. I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.
Today, for example: I didn’t go to church. I went on an “adventure” yesterday (my words) and I think I overdid it. I just couldn’t clear the brain fog this morning. I woke up and felt like I was in a trance. So, I slept/napped a bit more. Did some reading. Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices. (Actually, I probably have many more but these are my main 2.) I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.
I hate guilt. It consumes me and eats me up inside.
I have so much guilt about burdening my mom; her being forced to pay for my daily living expenses that I cannot take care of. (In addition to gas, car insurance, etc.)
Accepting my feelings of guilt, or
rationalizing coping with them, or whatever is one of my biggest crosses to date.
But at therapy yesterday Dr. C gave me some perspective I haven’t reached on my own:
She said that guilt results from when you do something wrong.
I didn’t do anything wrong to be diagnosed with 2 brain tumors and a hereditary cancer syndrome. I didn’t cause that. I didn’t make a less-than-desirable choice and am now forced to live with the consequences. I just have a “shitty” brain (her words). And she asked me, “Would you rather have a shitty mom and a good brain?”
No. No way no how no no no. No no no nope no.
I will take all the crappy things in the world because I have the best mom ever.
I got the better end of the deal then. ❤
…but right at diagnosis (after the brain surgeries) I had 2 huge fears. Fears that kept me up night: that I would have to have the shunt and have to file bankruptcy.
Thankfully, I have avoided the shunt so far.
I met with an attorney today to discuss my bankruptcy options.
I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.
No one can tell me what to do.
But, what do I do?