When I was little I didn’t have an imaginary friend. I always wished I did, though. Back then I always wondered, “Where do they meet their friend?” – HA. To be a kid again and have that thought be the extent of my fears: how to meet an imaginary friend.
Alas. Today? So much is different.
Where to even begin? How can I separate my fears from imaginary ones? Granted, getting diagnosed with 2 brain tumors was such a kick in the neck: I will never have any fear worse than this come true.
Having some distance from 2011 though, I can’t say I do much of imagining anything anymore.
Er. Not to sound like I am on the pity pot; it’s sad because it’s true.
I have a virtual friend who has offered me her expertise, advice, support, on this whole disability mess. (THANK YOU!)
I chose not to read the judge’s 23 page denial because it will only make me angrier and more suicidal.
My virtual friend was kind enough to read the denial for me.
In part, the denial states that I was “fine and happy” in the courtroom. (I was trying to be professional and not lose my marbles. I almost did cause a scene at the end and I held it together because I was afraid THAT would be held against me.)
Over the years I have told my doctors that “I’m fine”. The judge held that against me in part of his reason to deny me.
(I have only told my numerous doctors “I’m fine” because I AM TIRED OF TELLING THEM ABOUT MY PAIN ALL THE TIME. MY CONSTANT HEAD PAIN, CONFUSION, MEMORY PROBLEMS, FINE MOTOR SKILLS PROBLEMS, ANXIETY, DEPRESSION, ETC.) But, that doesn’t mean over the 6 years since my life got turned upside down I never told ANY doctor I am in horrific pain? I DID!
The advocate told me if I chose to appeal then my case would go back to the same judge. My virtual friend said that in the denial it says that it may not go back to the same judge.
So kids. If you’re in the process of filing to disability, don’t EVER tell any of your doctors that you are fine. And, don’t find someone to “help” you online.
You may think getting diagnosed with 2 brain tumors and a hereditary cancer syndrome is bad?
Try getting denied for disability.
This is actually worse.
I try really hard to be brave.
I really try hard to be strong.
You cannot survive without money.
I am broken.
What is the point anymore?
Approval would have helped me avoid filing bankruptcy. That’s now next on my to-do list.
Every time I think about it I begin to cry.
Every thing I am feeling and thinking now is exactly what I feared would happen.
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. ❤
What do I pursue now that my life is such that it is?
Initially my plan was a career in education. But, the brain tumors (and surgeries) have put a kink in that plan.
I know there’s more to my life than stress, financial ruin, depression, despair.
Where do I find the “more”?
When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head. (To me) I only see my head. I only see it bandaged. I only see me, laying in the bed alone, because I was the only one who was walking through this experience. I remember my mom wanting to take a picture of me and I flat-out refused. A picture of this? Of this moment? Why? Who wants to see this? Who would want to even remotely remember this moment in time? She took this picture the night before the first brain surgery. But she didn’t give up. In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera. I didn’t want anyone to see me like this. I think the picture made it too real. The camera made it too real. Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.
I have more pictures of after surgery. The incision, its healing. I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures. I didn’t really identify, or know how to identify, with that person. The person who had their skull opened twice. The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis. In my defense, I know I’m better than I was. And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.
Edit 5/8/17: I was going through my Drafts folder and found this post. So funny how this post brings up so much anxiety even from 3 years ago. I am so thankful I have this blog to document my life.
I am by no means a writer. I use this blog to document my life since diagnosis, so I guess it’s more a journal, of sorts. Not that there’s anything wrong with that! But, I have always wished I could write well/better. I like to do these Daily Prompts when I can to gain some practice. Hopefully it’s improving my writing.
As a child, I was definitely an avid reader. I remember being holed up in my room all weekend reading either these or these. I probably didn’t see the sun on most weekends when I was a teenager. One of my best memories is going to the mall each month to get the next in this series!
Then life happens and I kind of get out of the habit of reading. Weird. Books are in my veins. I have worked at 2 different bookstores, too!
But lately? Something has changed. Since diagnosis of brain tumors and surgeries, reading has been much more difficult for me. Not enjoyable. Almost painful and completely irritating. When I have to re-read the same paragraph many times, I just get so angry. At myself, at my life’s situation, everything.
Thankfully I changed that mindset a few months ago. I have picked up reading again with a vengeance almost. I know how beneficial reading is, and I view it as physical therapy for my brain.
For the sake of my brain for now and the future, I am once again an avid reader. I just finished this book and am now reading this one.
Do you like to read? What would you recommend?
Well, folks. I made it through the hearing.
I have refocused my thoughts since then to positive ones, but believe me, it’s very hard.
When I walked out of the hearing room I broke down. From the pent-up emotions, things the judge said, my stress, everything. I just lost it.
But, in the time that’s passed I keep reminding myself that: I DID MY VERY BEST. There’s absolutely no point in rehashing what I “wish I would have said”. I will hear the judge’s decision in 30 days.
I am repeating to myself a mantra: “I am health. I am wealth. I am love” – which translates to: I don’t want breast cancer. I want to be financially stable. I want significant love in my life.
Thank you everyone for your prayers and good thoughts. I am envisioning success!
Why does the word “everyone” look weird to me? Like I spelled it wrong?
Anyway. I just wanted to check in with you. I know I’ve been a bit sporadic with posting. Some days, my life is pretty basic and boring: I go to the gym and read (true story). Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story). I try to stay busy and distract myself with things that are beneficial for my mental health: I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.
Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes. Nevertheless, it’s mine. My point of writing is that this week I finally have my disability hearing before a judge. To say I’m terrified would be an understatement, you know? I have this weird feeling in my chest: Anxiety, obvi. But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday. Literally. And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head. Like, what is the purpose of my life since then? It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along? What will this judge think? Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?
I pray that there is.
I’ll be in touch soon. If you have any extra prayers, please send them my way, and to the judge too. ❤ Thank you.