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.   

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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. 

Call it Karma?

I’ve thought so much about this: did I get sick for a reason? Was this a lesson in disguise? Had I treated someone badly or was this just life’s way of telling me to slow down? The probable answer: none of the above. But these are the thoughts that kept me up at night.

It was a freak accident. I know that deep down. But as I began remembering things about my life about a year or so before, I started to think, was I actually a good person?

I know there were one or two people who I had not been on great terms with before I got sick. I know I had been selfish or conceited about a thing or two. I’ve wanted to acknowledge that for a very long time, so this post is my “I’m sorry.” I suppose I can never know this about myself, but I like to believe that this experience humbled me.

Like I said, I know that none of what happened to me is truly my fault. The cardiac arrests, diabetes, all of it was simply bad luck and bad genes. What I really want to say to my readers is this: Live as if you’ll die tomorrow, and leave no enemies behind. You may never know if you’ll have the chance to make amends, and heaven has no room for regrets.

What’s luck got to do with it?

For months after my episode more than two years ago, most people I encountered told me with amazement that I’m so lucky to be alive. I agreed, partially because I wanted to feel lucky and partially because I didn’t want to be a downer. It wasn’t until I started talking to someone who also had experience with brain injury that I understood what I was actually feeling, and it wasn’t exactly luck.

“Sure, you could have been worse, but I wouldn’t say lucky. I’d say if it were worse you would have been more unlucky, that simple.”

Those words, although they sound pessimistic, were the truest words to define how I felt that I couldn’t come up with myself. Luck is finding five dollars in your pocket when you really want a cup of coffee. It’s getting in line for a ride just as the theme park employee is letting the next set of people on. Surviving cardiac arrests is not lucky, it’s a good twist of fate with so many consequences that are not easily overcome.

I still play along whenever someone tells me how lucky I am after hearing my story. I mean, I’m more than grateful to be alive and I’m happy I never went through the whole “I wish it killed me” phase. And yes, I am more lucky than some people who have succumbed to health issues. It’s just that I would not choose this particular way of life for myself if given the option. Sometimes you have no choice but to catch the curve ball life throws at you, lest you be hit in the face.

I am lucky in so many other aspects. I have a loving family and great friends who have been a huge support system for me; I’ve had the privilege to complete my bachelor’s degree and fall right back into my former position at school; I’m living an (almost) normal life, despite a few struggles. So, have I had a great stroke of luck health wise? No. Am I blessed in just about every other aspect of life? Absolutely.

“Oh my third cousin has diabetes, I know all about it!”

It’s exciting to know what someone is talking about. Everyone wants that connection with someone that gives them a common interest.

However, because you know someone going through a similar issue does not mean you know me. It’s not that I don’t want you to know me, or that I’m not open to telling you what I’m going through, it’s just that health issues like diabetes are different in Every. Single. Case.

I know by my symptoms whether my sugar is high or low. Dizzy and light headed, unless it’s accompanied by weakness and shakiness, means high. High means I have too much sugar in my blood and need insulin, not more sweets.

I don’t blame anyone for not knowing this. Unless you live it, there’s no reason to know. But I want to break the stereotype that every time a diabetic doesn’t feel well, it means they need sugar. More often than not in my case, it’s the opposite. For me, symptoms are as follows:

HIGH

  • Extreme thirst
  • Frequent bathroom use
  • Nausea (ssometimes to the point of vomiting)
  • Blurred or strained vision
  • General discomfort

LOW

  • Shakiness
  • Weakness
  • Slow processing (speaking, actions, etc.)

Either alternative is not good, and way worse if left untreated. However, treatment is extremely different for each case. Juice and crackers are not going to help if someone’s blood sugar is already 300+.

So before you tell a diabetic to drink some apple juice, listen to them. That might only hurt them. Type 1 diabetes is very different than type 2, which means symptoms vary, as do blood sugars. I feel like type ones are more prone to high blood sugar than low, and in both directions, the numbers are more extreme.

It’s absolutely okay to want to know more about each type and to ask questions. But the rule applies here, you know what they say about assumptions. Every case is different, so please don’t form generalizations. I’m 100% positive that most diabetics will not be offended if you try to have a conversation with them about it.

For us, it’s as simple as “why is green your favorite color?” Speaking for myself, I like curiosity, because curiosity leads to awareness. And awareness is the first step in learning someone’s story.

Work (in progress)

So the week before Christmas I got a new job as a dietary aide at a senior care center. That’s basically a fancy name for food service and kitchen help.

I struggled A LOT at first. I’m still struggling with speed of getting things ready for the tray line and the massive amounts of dishes we have to clean after every meal. Basically just remembering what to do next is a humongous challenge for me.

And my co-workers noticed. My boss has talked to me about why I’m not catching on as quickly as I should be and the rest of the staff gets frustrated with me. They haven’t said anything to me personally, but it’s kind of obvious.

But little encouragements are enough to make me stay, at least for now. I ended up telling at least one of them what happened to me a couple of years ago and the lasting effect it had on my memory. She’s since been much kinder to me, and now she’s more encouraging than critical. Last night she said something so simple, but it was something I needed to hear. “Good hustle tonight, Casey.”

That’s all it takes. When you really believe the world can read the word “damaged” as if it’s written across your forehead in big bold letters, it starts to fade away with every little compliment or encouragement.

My point here is not that every situation will improve for you when you have a disability if you tell someone about it. No one will understand if you don’t, and very few will understand. Most people who I thought would judge me more harshly for my disability have done the opposite: they listened and they understood. They became more patient.

I’m learning to give people chances to understand, just as I’ve been given chances to be successful. More than many chances, actually. Strangers are not the enemy, and judgment is reserved for character rather than capability. It’s pretty much human nature.

I still have a lot to learn, but I’m less afraid of failing. Most people do not want to see you fail. They’re rooting for you to succeed. Root for yourself, too.