Remember when I said wake me up when September ends? Well, September ended and on a scale of 1-10, my desire to go back to sleep is at the high-school-senior-on-a-Monday-morning level.
“do not lose hope. please believe that there are a thousand beautiful things waiting for you. sunshine comes to all those who feel a little rain.”
In case you haven’t figured it out by now, I wasn’t actually asleep this whole time. I was actually finishing my college degree. Y’know, the degree I should have gotten in May 2019 before my tumor decided to make it’s epic debut. One of these days, I am going to write a blog about what to do when trauma disrupts education. If someone would have told me a couple months ago that in October I still wouldn’t be recovered, I would have deaded them right then and there because I don’t need that negativity in my life. You know that saying “hard work pays off”? Let’s just say I'm working harder than Harvey Weinstein’s publicist.
If you’re curious about my progress, let me fill you in. Doctors warned I could lose my vision & hearing. They expected I would be on a breathing tube for a long time and have difficulty eating (as if, I’m a self-procalimed Chopped judge). Doctors expected I would not walk again. They also expected I would have difficulty speaking and a bunch of other things, but those are the main ones.
I lost my hearing in my left ear for a few days at most, then it became hypersensitive and it still is. I am not sure if I ever technically lost my vision, but I wouldn't have been able to see someone dangle a $100 bill in front of my face to save my life for a few weeks. My parents went as far as discussing things like construction to widen the doorways for a wheelchair to fit through and making me a room on the main floor so things are more accessible. I was in a wheelchair for a while. Then I had a walker, then a rollator. Now, I have more swagger than Snoop Dogg and use a pimp cane. Okay it’s actually just a regular cane but who’s asking? I can sort of walk without my cane (short distances) but I look like a toddler who just faced a bottle of Jim Beam. I can speak now, but not too many words in a row before I lose my breath. Did you know that your mind subconsciously takes enough breath for you to be able to say whatever it is you’re going to say? Yeah, neither did I. Just another “second nature” unappreciated thing I took for granted. Add to the list: standing, drinking, smiling, blinking, sleeping, eating, sitting up. All things I had to relearn. Shit, I was even on the ground on all fours trying to relearn crawling in attempt to improve my walking. I put my little sister’s old volleyball pads on my knees because we have hardwood floors and it hurt. When you have no balance, no coordination, poor sight and dexterity, and no sense of velocity, even crawling seems impossible. I was like a giant ass 5’9 baby, trying to crawl and shit, having to be bathed and wiped. Now I’m laughing but it isn’t funny.
It wasn’t the things doctors warned me about that makes this recovery so hard, it’s the unexpected. Everything doctors expected and warned me about, I basically gave a giant middle finger to. *Cue Look at Me Now by Chris Brown*. The things that can not be explained are the scariest. The things to which the only answer is “time”. The constant “what happens now?” thoughts. The curiosity of not only me, but all doctors and therapists I come across. When I say therapists, I mean Physical Therapists, Occupational Therapists, and Speech-Language Pathologists. I saw a neuro-psychologist one time in rehab, because they made me, never again. I should say - I have absolutely nothing against psychologists, I even studied it and considered it for a career. In fact, my mom wanted me to go to therapy my senior year so I did, her name is Diana and she changed my life. She even bought me Oh! The Places You’ll Go! by Dr. Seuss. I’m upset Dr. Seuss didn’t make any mention of this shit. Anyways, I’m all for therapy, it’s just that I don’t want to be helped as badly as I want to help. Somewhere a psychologist is reading this thinking, “she is so messed up”. I turned to these blogs because not only would I have not been able to physically speak to a psychologist until after months of SLP, but the one I saw in rehab made me cry and I don’t like to cry. She was like “I see you were on a children’s oncology floor, tHaT mUst hAvE bEeN sO haRd” No shit it was hard, my roommate was 8 and I have my own child, it was sad as hell. I know she was just doing her job, but I was on some “nobody makes me bleed my own blood” shit. Nobody has answers for me, still. I basically have my Doctorate in Brain Surgery Recovery from Google University. There are no cases the same as mine, in fact, any doctor will tell you “no two people are the same, no two surgeries are the same”. How long did I have it? Who knows. Will it grow back? Don’t know. Will I ever be the same? Only time will tell. Why do I have 6th and 7th nerve palsies if no nerves were cut? Nerves are mysterious things. Why does the entire right side of my body, head to toe, have pins and needles? Don’t know. Will I be able to walk down the aisle and smile on my wedding day? Nothing. I am going to share all my answers as I get them, and I will get them.
The uncertainty has been emotionally stabbing me. Repeatedly. That’s why it’s important to me to be completely transparent in these blogs, they’re on the internet and always will be (remember that next time you go to post a booty pic). These blogs can provide answers for others that I was unable to get for myself. It’s a twofer, I get to help myself by getting my thoughts out of my head and into writing, and I can potentially help someone else.
A few nights ago I could not sleep. I have this issue at bedtime frequently, my mind runs faster than a mom when the ice cream truck passes her kid. However, this time the thoughts keeping me awake were not my usual “will I ever be normal?”, “I wonder what my son will be when he grows up..”, “If I comes before E, except after C, and as in A, like neighbor and weigh, then why is height spelt that way?" thoughts. What was keeping me up the night I realized how badly I need to vent was the thoughts I cannot take back, and the words I cannot unspeak. I then coined the term “Sugically Induced Depression”. Apparently, that is not a thing. It should be. I definitely experienced depression that I wouldn’t have otherwise. I not only thought things that scare me, but I said some of them out loud (to my poor mom of all people… imagine telling your kid they are lucky to be alive and hearing them reply “no YOU’RE lucky I am alive”). When you’re “trapped in your head” unable to write in a journal, unable to speak all of your thoughts, unable to walk, drive, work, pick your kid up, unable to even look at yourself, having depressing thoughts is normal. At least, it was for me. I never wanted or needed anyone to worry about my emotional state, I just felt I was truly entitled to feel the way I did, I was going to get through it. There is nobody I want to prove my strength to more than myself. That’s why I think Surgically Induced Depression should be a thing, for other people to put a label on, and for people experiencing it to not feel so crazy and alone. The good thing about Surgically Induced Depression, is as surgical symptoms subside, so do emotional ones. Of course, like anything, there are exceptions. I realize I might sound crazy to someone who never experienced it, but what about an athlete that needs knee surgery? Surgery can have unexpected results, and they can be career shattering and/or life altering. Coping with the unexpected, immediate, and long-term affects of surgery is a process. It gets better. I don’t wish the things I used to wish, I don’t think the things I used to think. But just because I am feeling better does not erase those thoughts, I can’t take them back. They have changed who I am and how I perceive life, and I’m sure they have left little scars on the people I have said them to. It would be easier to slap a term on something like this (like Surgically Induced Depression) than it is to try and explain it.
When you go through any life-threatening situation, the people around you don’t know how to react and it can make you feel even crazier than you already do, and them feel even more helpless than they already do. Is what they are going through normal? Will they be okay? Will the “old them” ever come back? How can I help?
Here is how you can NOT help: Do not bring them 5 chocolate cakes and a lb of Reese’s Peanut Butter Cups (unless they ask). If they can not exercise or even walk this off, you are guilty of contributing to their Surgically Induced Obesity. I just made that up too.. apparently, that isn’t a thing either. My body says otherwise. Do not tell them about your best friend’s uncle’s ex wive’s brother’s girlfriend who also had that surgery. We are sympathetic, but honestly, we do not care. In terms of recovery, if you are not a doctor or have not gone through the same thing, then you really do not understand, so it’s just better to leave it at that. It sounds harsh, but it’s the unfortunate truth. I wish you could help me more than you wish you could help me. Do not tell them horror stories of “how much worse things could be”. Trust me, we know how much worse they could be. It contributes to both our fear and our guilt. Do not bring up that “new normal” bullshit. Just don’t. Do not, in detail, remind them of how things used to be. Of course a little reminder/comparison doesn’t hurt, but it’s hard to float in how far you have come when you are drowning in how far you have to go.
I feel like for the next few months people are going to see me and say “I don’t know what to say to you after your blog about what not to say”. Hint: don’t say that either. Just a simple “I’m glad you’re better” and pat on the back will do. I also accept Visa, MasterCard, American Express, and cold hard cash. If you want to know something, anything, ask. Seriously. I understand the curiosity all too well, it is human nature to be curious about things we do not know about. Trust me when I say I’d rather talk about it than be stared at like food in the microwave. Fun Fact: it’s not kids that stare, it’s fully-grown, nosey ass adults. To be honest, I actually like to talk about it because it makes me feel strong like bull (That is a There’s Something About Mary reference and I hope you got it). I’d rather not spend either of our time talking about every. single. story. you have ever heard in your entire life about tumors or surgeries. Like the doctors say, every person is different and every surgery is different. I am not like your cat’s sister’s owner’s friend’s daughter that had a TBI and is a vegetable. I am like me and if you want to talk about that, let’s go get lunch. Your treat.
I think this is probably my most honest blog yet. I hope people do not think I am angry. I mean, I am, but not as angry as I am thankful. I used to be more angry than thankful and I am happy to say my appreciation outweighs my anger now, but it took a lot to get here. I am not trying to make people tip toe around me, I am being transparent. After all, this is me, writing for therapy. Consider yourself Planet Fitness and don’t judge.
I just have to say one more thing. In speech therapy a few months ago, my speech therapist told me to look up videos of my favorite comedian and repeat things when they say them, as they say them. She was trying to teach me how emphasis on certain words or fluctuations at specific points in a sentence can completely change it’s meaning and deliverance. So, I chose Ellen. Because, who else? She’s THAT chick. I love her and was happy to have “homework” that involved watching her. My therapist also read my blogs and thinks I’m a good writer so she suggested I write Ellen to tell her how much watching her has helped me, and continues to help me laugh and learn to speak. Long story short, I wrote her like 20 times. Would you believe she hasn’t answered me? Rude. Like, what are you busy or something? I was so hesitant to write her at first because I legitimately thought she’d pick me and wasn’t ready to show my face to the world, let alone show my face to people at the supermarket. Then I was like “you know what? It’s all part of the recovery, YOLO”, and wrote her. If you know her, 2 things: 1. Please show this to her, and 2. Ask her if we can be friends.
