Sorry I’ve been on a longer hiatus than Macaulay Culkin. I was supposed to graduate in May 2019 and my stupid brain tumor ruined THAT too. So, I’ve been busy working on completing the rest of the semester that I was unable to finish, in addition to my physical/speech therapies. It’s no joke. Recovery is a full time job people. But, life goes on.
“I love sleep. My life has a tendency to fall apart when I’m awake, you know?”
“I have good news, and I have bad news” …not exactly the most comforting words coming from the brain surgeon who just operated on your loved one. Hint: I am the loved one. My family’s hearts dropped, lumps of fear clogging their throats. The good news being surgery was successful. I was alive, and what they initially went in for was fully resected. But what’s the bad news? Was I paralyzed? Did they find another tumor? Was it malignant? No, no, and no. The bad news was that my surgeon had “no answers”. No answer to how I got it, no answer to how long I’ve had it (they think I got it in early childhood, being that the type of tumor it was is most common in children), no answer to how I “lived so long” with it, no answer about what the recovery process will be, and no answer as to whether or not it will return. Scary shit.
My family @ my surgeon
With my neurosurgeon’s uncertainty came a tsunami of confusion. With him not knowing how long I had it, comes the lovely excuse of the brain tumor. All the dumb shit and bad decisions I’ve made over the years… I just slap the “it wasn’t me, it was my brain tumor” excuse on it and call it a day. Nobody can tell me otherwise. If my brain surgeon doesn’t know, then let’s be real, you don’t either.
Shitty past relationships? My brain tumor was “in love”. Saying “This dress is so cheek (chic)” out loud at a really upscale dress boutique? My brain tumor couldn’t pronounce shit. Add to the list: chivalry (which I pronounced chive-all-re). Make my first AIM screen name RainbowLoren1992? My brain tumor thought rainbows were beautiful. Lock my cousin in a dog cage? In my brain tumor’s defense… she was bad as hell and left me no choice, your tumor would’ve done the same thing. Turn 21 and don’t renew my expired license right away, causing me to completely lose my license and have to start all over again from my permit? Gosh, that brain tumor was clueless.
I guess now’s a good time to name my tumor. I name her Patricia.
Joking aside, the fact that I potentially had it since childhood really confused me. How much could I actually blame on the tumor? Would I have been the same without it? Would I have made the same choices? The only feeling more present than confusion (and anger) has been guilt. Guilt is such a sneaky mother fucker. Anyone who is a parent knows how quickly and often guilt just sneaks up on you. My mom once told me, “Get used to it. The #1 feeling in motherhood, besides love, is guilt.” That shit is so true, moms are always right. Night with no kid? Guilt. Gotta go to work? Guilt. Gotta send the kid to school? Guilt. Spending money? Guilt. Eating ice cream after they go to bed? Guilt.
Not only would I experience what is known as survivors guilt, but I did and still do experience it in all different scenarios, every day. I was in a pediatric unit, and felt guilt for complaining when I got to live 26 years “healthily” and enjoy being a child to the fullest. I feel guilty that my parents had to see me with blood running down the sides of my head from the drills, vomiting profusely. I feel guilty my siblings have to cheer me up and remain positive for me, when I always took pride in the fact that I was the one who did that for them. I feel guilty my son always says “I’ll help you mommy” or “be careful mommy, don’t fall” when I should be the one looking out for him. I feel guilty my fiancé works 60+ hours a week, then comes home and works some more on things I should be doing for him. I feel guilt that I can’t even go to the bank alone. Actually, I can’t go anywhere alone, because I can’t drive. I feel guilty for whoever is “on duty” to take me to my physical and speech therapies an hour away, and just sit there and wait for over 2 hours while I’m in therapy. The guilt was even worse when it was my fiancé taking me on his only day off. Like - I know you’re exhausted, worked in a 105 degree kitchen all week, over 12 hours a day but can you wake up at 7am tomorrow to take me to therapy? I feel guilty I cannot be an “active class mom” at my son’s daycare, that I cannot drop him off, or pick him up and be the first to hear about his day. Honestly.. I can go on and on. But mostly- I feel guilty that tumors kill people day after day, yet here I am.
I joined about 25 Facebook groups (from TBI groups, to brain tumor groups, etc) looking for support and advice. One of the best bits of advice I have received from those groups was regarding my guilt - someone said to me “When you’re happy, you don’t think ‘but they have it so much better’ so when you’re sad and think ‘but they have it so much worse’ just isn’t fair to yourself”. That really hit home for me, and I try not to feel so guilty so often, of course it doesn’t really work, but it helps.
Just because I feel guilty without my kid doesn’t mean I don’t enjoy it
Another shitty aspect of the surgeon’s uncertainty is the fact that he has no clue what to expect for my recovery. Initially, he thought I’d be on a breathing tube for at least 24-48 hours, but I was breathing on my own right after surgery (I’m so talented). He also thought I might lose my hearing, in addition to the possibility of losing my ability to swallow. He was not sure if I’d ever walk again, and expressed concern that I’d have motion sickness for the rest of my life, even when sitting still. Luckily, I have defied all those possibilities. He also thought I’d need more surgeries down the line but I’m praying I beat those odds, too.
After MONTHS of looking for any idea of what to expect from my recovery, and finding no answers, I basically begged my therapist’s to give me their “best educated guess” on when I’d at least be able to walk and talk again. They finally gave me an answer, which was soo much better than no answer. They guessed September-Feb (6mo-1yr). Well, here we are, less than 2 months away from September, and although I have come so far, it’s hard to imagine I’ll be even close to where I want to be in September. But, that’s all I’ve had to hold on to and best believe I’m still holding on to it. So deadass, in the words of Green Day, wake me up when September ends. And if I’m still not where I want to be, wake me up in February, because this day to day guilt and disappointment is consuming and discouraging, sleep is peaceful and easy.
or just feed me when I’m asleep, I’ll figure it out.