“I’m Sorry”

It’s become a suffix to all of my sentences. Ask a question, get an answer, say, “okay, sorry.” Even when I know I’m not, there are times I feel like a burden to people with a perfectly okay memory. When I apologize, I’m not apologizing for asking someone to repeat something they just said. I’m apologizing because I shouldn’t have to ask.

It’s a self confidence issue. What I’m actually sorry for is not forgetting the time you just asked me to start a task, but knowing a normal person would be able to remember. I, instead, have to interrupt what you’re doing to ask again. I’m not what I used to be.  

But I also know that it’s not my fault, and that I’m not finished. People grow constantly, brain injury or not, and I’m still working on myself. I just have to work harder than most people. So, lately I’ve been trying to replace the word “sorry” with another phrase that shows gratitude for people helping me rather than one that places blame on myself: “Thank you.” For example, at work, where I have to prepare a certain amount of desserts for residents:

Q: How many pureed desserts do we need again?

A: 20

My response: Okay, thank you. About a week ago I would have started my question with “Sorry, but can you tell me again…” and ended with “Okay, sorry.” I feel like the constant apologies are even more of a burden than the thing I’m actually apologizing for. They solicit an affirmation that my questions are not a bother, even if they are, and it just reminds whoever I’m speaking with that I might be making a mistake.

With my new response, it also insinuates that I am actually listening to what a person is telling me. It’s gratitude rather than guilt, and I feel that both parties are more comfortable with that.

What I’m learning is that I shouldn’t have to apologize for something I have no control over. It’s not my fault, and it isn’t anyone else’s fault either. I still let a few apologies slip now and then, but I’m better every day. I hope that continues.

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Forgetful Films (and TV)

Some of my favorite movies, even before my memory loss, had to do with memory loss. But after losing a lot of my memory, I watched them differently; more critically. While some films enforced stereotypes about memory loss, others hit the nail right on the head. Now, before I start, I have to add a disclaimer: just because some of these movies and TV shows aren’t true for me, that doesn’t mean that they can’t be true for someone else. In fact, one or two of them are based on true stories. However, some claims are absolutely ridiculous when it comes to memory loss, and it’s obvious that the script writers have not had any experience with the subject and that’s okay. What’s not okay is people taking those films and TV shows as fact. So here is a breakdown of (in my experience) the most accurate and inaccurate depictions of memory loss in popular media.

1. The VowThis one is tricky because it is based on a real couple who went through a real situation. I don’t want to believe most of what happens, mostly because the film industry used this horrible event of a car crash to portray a developing relationship rather than learning to deal with the memory loss itself. I suppose they had to for entertainment value, but a romantic story line shouldn’t be the main event in a person’s tragedy or recovery. In fact, the point of view wasn’t even from the character who had the accident; it was from her husband who had to deal with being forgotten; not the one who was doing the forgetting.  Rating: 4/10

2. Eternal Sunshine of the Spotless Mind– This was tied for my favorite movie even before my incident. And this one is different because it doesn’t claim to be realistic. In fact, it’s the obviously fictional realism that makes the movie what it is. However, one thing it does get right are the tiny flashbacks a memory loss patient can get. I remember certain scenes of my life right before my incident, but in bits and pieces. They disappear as quickly as they come, which is represented in this movie. Love story aside, this movie explains what it’s like to remember people you were once close to and realize your relationship has changed. And sometimes, you get the chance to start over with them. Rating: 8/10

3. Finding Dory Easily the most accurate representation of how my life works. Leave it to Disney to make me relate so strongly to a fish. All of the little situations she finds herself in throughout the movie, even in Finding Nemo, are meant to make the audience laugh. And they do, even for me! But little does most of the audience know, those anecdotes thrown in the movie for comedic relief are so incredibly realistic. Something as simple as remembering P. Sherman 42 Wallaby Way Sidney is such an accomplishment when you have a short-term memory loss. Introducing yourself over and over when you meet someone new is a reality. Not remembering names of new people is insanely common. Overall, the character of Dory is silly and sounds absurd, but she simply says and acts out all the things people with memory loss feel and choose to hide, at least in my experience. She gets lost all of the time while I only find my way thanks to my GPS. Having to repeat information to herself over and over and forgetting upon the smallest distractions is something else we have in common. Following your instincts despite your illogical reasoning is something you have to trust, regardless of others’ doubts. One thing I have yet to grasp that Dory has down is knowing that everything will be okay, no matter what we forget. Maybe it’s naive to trust in an animated movie, but when it’s the closest thing to your own reality, you hold on to it. This film is hands down the best representation of real-life memory loss there is.

Rating: 10/10

4. Full House: Michelle Rides Again- This two part episode made me roll my eyes before my own memory loss, and now watching it even makes me a little angry. This show has always been on the corny side, but the way they portray Michelle’s memory loss after she falls off of her horse is way overdone. Firstly, for someone with amnesia, Michelle is surprisingly calm to go back to a house full of strangers. The dialogue is cheesy and the sentimental conversations between her family are very exaggerated. Some of the things she is allegedly confused about are things that people usually don’t forget. Like the fact that all of her family lives in the same house with her, or even the simple fact that she likes dogs.The most surprising thing though was that Michelle’s memory loss only lasted until the end of the episode. It instantly came rushing back all at once when she wakes up from a nap. The writers didn’t seem to do much investigation into what memory loss really entails. Although every case is different, I doubt anyone’s case is like Michelle Tanner’s.

Rating: 2/10

I will spare you from reading any longer, but those are just a few examples of how the media writes their own versions of memory loss. Some are absolutely accurate while others tend to embellish and take no realism from actual memory loss cases. Let me know your favorite or least favorite memory loss films and TV shows in the comments.

 

Love letter to my brain injury

WARNING: Satire ahead.

Dear Brain Injury,

Never in a million years would I have thought I would encounter someone like you. You make my head spin; my mind does loops when I think about you. And as much as I try to concentrate on other things like friends, family, food or even what I’m going to wear tomorrow, you’re always at the forefront of my thoughts, erasing every other thing that dares enter my mind.

Is it the blank stares that makes my heart skip a beat? The ones that I get from strangers when I forget something we were just talking about? Maybe, but it’s more likely the sense of insecurity you instill in me. The feeling that makes me hold back what I want to say for fear of repeating myself. Oh, how I love the awkward silences and personal connections I’ve lost because of you. The way you make my voice crawl back inside my throat, just when I think I can chime in on conversations, because I know I’ll sound utterly unintelligent gives me such a thrill.

I don’t know how I lived so much of my life without you. Holding on to conversations I had with others was an inconvenience and I’m so happy that you’ve alleviated that daily stress. You’ve made me question everything I used to know, often more than once. I love the uncertainty I feel around you. You incomplete me.

Even with all of your redeeming qualities, you still constantly surprise me. You fill me with hope when you’re able to recall a small detail, only to shut down at the most important moments. Living a life with you is living a life on the edge; it may be difficult but there’s always a new challenge that you can’t quite seem to overcome, and the adrenaline is absolutely savory.

What I’m trying to say here, valentine, is that if I had to be with anyone on this special day, it most certainly wouldn’t be you. So thank you for allowing me to see that other challenges I’ve faced were not as critical as they once seemed. As far as life struggles go, you are the only one for me. 

Your Valentine,

Casey

 

Why didn’t you say so?

When I meet someone new, I don’t introduce my short term memory loss as if it were part of my name. Firstly, it’s kind of personal for me to talk about, and secondly, that’s kind of a strange thing to say to someone. “Hi, I’m Casey and I suffer from a short term memory loss.” Change the name in that sentence and it’s an exact quote from Finding Dory. While that movie is amazing and inspirational and probably deserves its’ own post, I am not an animated fish so I can’t quite get away with saying things like that in real life.

I probably should get in the habit of telling certain people like new bosses or co-workers about it, but it’s not as easy as it sounds. I can’t exactly bring it up in an interview because of my fear of not being hired despite discrimination laws, and also because I wouldn’t know how to start. Sometimes I wish I could wear a sign that explains my condition, but other times it feels like I already do.

So how do you explain an invisible disability so coworkers are more understanding when you don’t catch on right away? In my experience there is no one way. Sometimes there is no opportunity or right time to bring it up at all, so you just keep asking the same questions over and over while co-workers give you funny (judgmental) looks.

Other times, you talk to someone for a while and then once you feel comfortable enough you can open up to them. However, that option takes time and is usually less likely to happen. You really need to let your guard down to do that and that has always been tough for me. Additionally, the other person has to allow themselves to be vulnerable as well in order to be open to understanding what you’re trying to say.

The easier thing for others would be for someone with a disability to tell them right away, but sometimes for them, that is the hardest and most complicated option. So try not to be offended if someone with an invisible disability doesn’t immediately tell you what’s going on. It’s a huge inner struggle that they have to deal with, along with dealing with the condition itself. Just know that it is always harder for someone to admit they have a disability than for you to hear it.         

 

Therapy does not equal crazy

I’m pretty okay with telling other people who ask about my memory loss what exactly that means. I’ve been used to having to explain medical conditions since I was young. I’ve dealt with kids running away from me on the playground because they were afraid they would “catch diabetes” from me; I’ve dealt with strange looks and the automatic pity some people give out when you say, “I have diabetes,” and they don’t understand that it’s not a death sentence.

However, there is still something I have trouble saying out loud: I go to therapy. Before I got sick, I always thought that therapy was when a patient sits in a comfy chair while a doctor in a casual button down shirt and glasses asks, “and how does that make you feel?”

That’s the general stigma. And I did see one of those therapists for a while, but it wasn’t overly helpful. I think that kind of therapy either works for you or it doesn’t, and for me, it was the latter. The kind of therapists I’m used to talking about are cognitive therapists.

They give me strategies to deal with memory loss, teach me how to function in the world as best I can and target where I need the most help in order to come up with solutions. I’m not trying to diminish the work of other therapists or patients who see them. If they help you cope with whatever you’re dealing with, keep seeing them. That’s a therapist’s job, no matter what their specialty is: to help patients cope and improve their quality of life.  

Think of physical therapy. If you tell someone you went to physical therapy, they generally won’t assume anything other than that you may have had an accident. But when you mention cognitive therapy, those who know that “cognitive” relates to brain function will become exponentially more curious as to why you have to go. Brain injuries are more shocking than physical injuries because most of the time, they are invisible. And brain injuries to many people mean that there is something mentally wrong with you. Most are afraid of people with mental issues because of the stigma. 

No, I don’t have violent or neurotic tendencies, and no, I am not going to have a nervous breakdown at your feet. If you have questions, ask. And if that feels too awkward, please just do not assume the worst. The person in front of you carrying on a normal conversation might really be who they have been saying they are. A brain injury can mean many things and is not the whole of a person.   

Wavering self-worth makes for rocky seas

I’m good at a lot of things. I’m a decent writer, I can cook a few things when I want to and I like to think I’m at least somewhat compassionate toward other people. I am also not  good at some things. Dealing with pressure, remembering anything short term, not screaming when I see a spider, etc.

That said, I move at a slower pace at work sometimes. I’m not trying to be bad at it, I just have to take an extra second here and there to process what I’m doing at the moment and what my next move is. I understand completely where co-workers might get frustrated with me, and I accept that. It’s something I’ve learned is going to happen: I’m going to frustrate people with repetitive questions, but I also know it’s not my fault.

So having someone tell me “it’s okay” brings my anxiety level down from 100 to at most a 25. Especially when that person is in charge in whatever scenario is happening. I’m lucky enough to have a boss like that.

I’ve struggled with one particular co-worker who seemingly has deemed me incompetent. The tone in her voice is always short when she talks to me; she has made minor comments along the lines of “I told you this before, you need to listen.” Worst of all, to my boss at least, is when she leaves as soon as she’s done with her share of the work and leaves me to finish my share, no matter how much work I have left to do.

The first couple of weeks this woman stayed with me while I finished, but watched me run around like a chicken with my head cut off while I hurried to finish my work. I don’t work well under pressure, so having her there staring at me while I mopped the floors or finished the dishes was nerve wrecking. Other times she would leave me with another 20-30 minutes of work left. However, I didn’t want to be the company snitch so I stayed quiet.

When my boss finally asked me what usually happens at night, and specific questions regarding this woman, I was hesitant because I’m not there to cause trouble for anyone. He assured me it was okay and that he needed to know what was happening in his kitchen after he left, so I told him who was giving me trouble, although he seemed to already know the answer. Does she help you when she’s done with her work? Does she wait for you to finish before leaving? Is she nice when she tells you what to do next? The answer I gave him to all of those questions was no, although I wanted to lie for her. Why did I still want to protect this woman who has been giving me such a hard time?

Self worth. It’s something I have to relearn. I have to realize that I shouldn’t be mistreated because of a health issue I have no control over. I should still be given as much respect as I dole out. I spent so much time thinking I’m less of a person who is not nearly as valuable as someone who has a clean medical history. To be honest, that thought still runs through my mind pretty frequently, but I have made so much progress in the last 2.5 years. I should be allowed to feel proud of that. I’m not done yet, but I’m trying. I am a work in progress, and progress never ceases. 

Thank you

I realize I didn’t win a Grammy or a Pulitzer but there are a few people or groups of people I owe thank yous to. So bare with me, I’ll try to make this quick but I think it’s only right to give credit where credit is due.

Family:

Firstly, my parents and my brother who were with me every single day despite work and school. We’re related by blood but bonded by something stronger. I know I threw your lives into turmoil, but I wouldn’t be able to post this without you harassing the doctors and the insurance company for months after I got better. As for you, Joe, I apologize for taking away a crucial part of your young adulthood with worries and school nights of homework in a hospital room. But I think we’re much closer now than we were before, so something came out of it all, right?

The extended family: To my aunts who kept up with my parents every day for updates and shared them with all of my friends on social media, it really was amazing to see how many people were concerned for me. Many even with names I didn’t recognize at all. And the cousins who were there for support, both financially and physically, in thoughts and prayers, I promise to return the favor God forbid the tables ever turn. I really do have the best family in the world.

My MU family:

I got cards and texts and check-ins from friends at school, both present and alumni. Even professors and faculty kept in contact with my family. I really felt valued as more than a student at that school. I was pretty active in the communication department, which involved getting close to so many people, be they students, professors or even the faculty. Thanks for caring about me, even when I couldn’t show up to your classes. I hope I can be as supportive to someone someday.

My Foodtown family:

You really are like a second family to me. From coming to visit me to keeping me involved in all of your get togethers, baseball games, holiday parties and dinners, you always gave me something to look forward to. The biggest thing I looked forward to was coming back to work with all of you, and when that day finally came, you were patient with me while I retrained and you never became annoyed when I forgot simple things like all the produce codes I used to know. As tedious as the job was at times, part of me always looked forward to coming back to work. And I haven’t even mentioned the collection you raised for my family, along with my (frequently used) kindle and my Saint Anthony bracelet which I still wear every day. I met some of my favorite people working in that store and I promise never to forget them.

Last but certainly not least, friends. From those who came to visit me in the hospital to those who texted me before I was coherent enough to respond, I have nothing but love and gratitude for you. You have always been the most loyal and supportive group of people that I never thought could exist. This was a huge test for that and you all passed with flying colors, although I’m sorry you had to go through that test at all. And the ones who still wanted to hang out with me when I came home and couldn’t remember what day it was helped me feel more normal. You treated me like nothing was wrong and I think that’s the thing I’m most thankful for. No one else treated me normally for a long time.

Alright, if you’re still reading, now the sappy part is over. Thanks for bearing it. I promise to end this post in a few more words: Thank you all. I love you all.

Artists get remembered, but music never dies

Some people find an attachment to a TV series, others to movies. Then there’s music. Music has and always will be my security blanket. To me, there is nothing greater than listening to the passion in an artist’s voice when he or she is singing words to a song they wrote during a moment in life. It brings us back to our own moments. Personally, I have playlists upon playlists for every mood and memory.

Childhood thru young adulthood is one of the most emotionally intense periods of life (in my experience so far). The bands and artists I listened to weren’t much older than me, and they could express what my young angst-y adolescent soul wanted so desperately to say, or even what I hoped someday to feel. When you find something you connect with so deeply, it becomes a part of you: who you are; what you do. I can listen to a song and feel exactly how I felt when I first heard it. It’s the purest form of nostalgia.

When I first woke up after my incident a couple of years ago, I didn’t know where I was. I recognized my family and close friends, but new people and faces just wouldn’t stick. However, my last memory before everything went blank was sitting at PNC Bank Arts Center listening to a band that would become a significant part of my story: Gaslight Anthem.

When I listened to them before I got sick, I enjoyed their music with a passion that I listened to many bands with. Their voices, their words (especially their words), everything about them just struck a chord  with me (excuse the pun). But after my incident, they meant so much more to me. They went through it with me, whether they ever know about it or not. (Even when I went back a year later to visit the doctors and nurses who took care of me in the hospital, one of them pulled open his scrubs to reveal a t-shirt from the very same concert I was at. Coincidence?)

It’s not only Gaslight Anthem that played a role in my recovery, however. While I struggled to remember plots of movies I used to watch or books I once read, I could sing entire songs that I used to listen to, and they seemed to be the only things that elicited memories. Certain songs serve as a soundtrack to periods in a person’s life worth remembering. And anything I could possibly remember at the time was worth remembering.

I guess what I’m saying is that when you find a medium that brings back the simplest but sometimes happiest feelings, hold on to it. Embrace it. Live it. Feelings are memories too, and I thank God every day that I’ve held on to the important ones.

Minor Delays

It’s very strange how memory works. Every once in a while I still get these tiny bursts of memories from not too long before my incident that I never expected. The things that came back to me came back in pieces like a puzzle. While I have the frame of the picture completed, I’m still missing a few pieces in the middle. Occasionally one of those pieces will reappear, seemingly out of nowhere, and the picture as a whole becomes more clear.

Here’s a for instance: I didn’t remember this right away, but there were a few people I was once very close to who I was on bad terms with right before I got sick. When my parents first gave me my cell phone back (admittedly a little prematurely) they were the first people I tried texting or calling, not realizing we weren’t friends anymore. These people carried on normal conversations with me as if nothing was wrong, not wanting to upset me in my already unstable condition. Even through text though, something felt off.

When the pieces started coming back and I realized things weren’t the same, I didn’t immediately feel awkward. First I was angry. Angry that these people would just let me talk to them like we were still close; still good friends. The decent thing, I thought, would be to remind me that we don’t talk anymore, at least not like we used to. Tell me what happened. Help me remember. All I wanted was to remember, and it seemed that everyone was letting me live how I wanted in my medicated fantasy land.   

But a few months passed and I put myself in their shoes. While we may not have been on great terms, I realized they still cared about me enough to keep these things to themselves for fear of hurting me, and not just to clear their name from my list. It wasn’t because they wanted a do-over. They just didn’t want to put me through any more than I had already been through.

I’m still a little resentful for all of it. I can’t help it. I know it was for my best interest, but when I did start to realize that things weren’t the same, first it was like a punch to the gut, and then it faded to embarrassment. However, I appreciate the intention above all else. How would I have reacted if the tables were turned? The first thing you say to someone who lost the majority of the last few months should not be, “We don’t speak anymore.” That just simply is not what they need. It wasn’t what I needed.

So thank you to everyone who let me live a while with my naivety. And thank you to those who were there despite any differences we may have had. No matter what happened before, I will always be grateful for that.     

Strangers Like Me

I’ve met more people who have similar issues to mine by accident than I could ever meet on purpose. Most of whom I don’t speak with much or at all any more, just because sometimes that happens in life. You meet someone, spend a week straight talking, and then forget for a few weeks. Then, by the time you think about them you’re at the awkward, “Would it be weird to text them after a month of no communication,” stage. And being socially awkward in general, my answer is usually yes.

It seemed for a while that every time I started talking to someone new and we get to the point in the conversation where I feel comfortable telling them about my memory loss, their response was, “That’s so weird, me too!” (And by every time, I mean like three times. What can I say, I’m shy and don’t strike up conversations with new people too often.)

But, you have to admit, finding even one person who shares such a rare condition for someone in their twenties is exciting. The main difference in our conditions was that most others I’ve met have issues due to physical accidents, whereas mine was caused from internal issues. Regardless, it’s so freeing to talk to someone who really gets it.

I’m not trying to diminish the support of those around me who are completely fine. Friends and family have been some of the greatest assets and supporters in my continuing recovery and I wouldn’t trade them for the world. They let me vent if I need to and they do their best to understand, which I value so much. But there is no possible way for them to truly see where I’m coming from, and I would never expect that of them. I don’t want that for them.

I guess my message is this: go forth in the world, but don’t seek out people like you. Those who you’re meant to meet, you will meet. I’m positive that there is some force in the universe that wills certain people together, even temporarily, for when your struggle gets you down. May that force be with you always.