Aphasia information poster.

Why I Can't Say Exactly What I Mean as a Person With Aphasia

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Aphasia is a communication disorder resulting from damage to the parts of the brain that contain language (typically in the left half of the brain.) Aphasia may cause difficulties in speaking, listening, reading, and writing, but does not affect intelligence. There are many different types of aphasia such as global, Broca’s, Wernicke’s, primary progressive, anomic, and mixed non-fluent aphasia.

I fractured my skull in two places, the left temporal lobe and at the base of my skull.  I have anomic aphasia  (also known as dysnomia, nominal aphasia, and amnesic aphasia).  It is a mild, fluent type of aphasia where an individual has word retrieval failures and cannot express the words they want to say (particularly nouns and verbs.)

I can’t remember words, but it’s not just once in a while like when you have a word on the tip of your tongue and you just can’t get it out – for me it is constant.  It makes it really hard for me to have a conversation with people. When I know I am going to be in a social situation, I get anxious, which makes my aphasia even worse. Add to that my inability to read people’s emotions, plus my lack of self-control and self-awareness when it comes to saying inappropriate things, and I often feel like a talking disaster. I have seriously thought of making cards – like business cards – to hand to people when I first meet them with information about aphasia. Then maybe they won’t think I’m high or weird.

When I explain aphasia, I usually get the same response, “Oh, I get that all the time too, it’s called old age.” I want you to know it is not the same. Maybe it’s just me, but I would rather someone say, “Wow, that must suck,” than “Oh, that’s no big deal, I have that too.” Dismissing it as something less than what it really is makes it even more frustrating for me.

I also prefer to write rather than speak, which is why I choose to communicate via text or email more than talking on the phone. For some reason, speaking on the phone is harder for me than speaking to someone in person. I just can’t concentrate; my mind wanders. I can’t speak on the phone while I am doing something like cooking dinner. Often, my husband will call me on his way home from work and ask me about my day, or want to know how school was for the kids. I have to tell him I am cooking dinner and can’t talk. We have been married for 15 years now, and I still sometimes worry he doesn’t understand, or thinks I am not interested in speaking with him, or angry — which is far from the truth. I want people to know they shouldn’t take it personally if I don’t call them. Really, it’s not you, it’s me.

Writing is somewhat easier for me, because if I don’t know the word I am trying to remember, I can just stop and take a break, or Google “What’s the word for …….”  Believe it or not, Google usually comes through for me. But that doesn’t mean I don’t have difficulty writing. Most of the time, what I write doesn’t make any sense, so I get angry and frustrated and that makes it worse.  I just have to stop and walk away from what I am trying to write until the circuits in my brain start working properly again. That means my responses to emails and texts are not always timely.  It’s not because I am ignoring you. It’s because my brain injury makes me feel like a hostage with my mouth covered with duct tape and my hands tied behind my back.

I feel controlled by my brain injury. No matter how much I fight it and try not to let it control me, I always lose.  So, I have stopped fighting it, and now I am trying to work with it. I’m trying to find some harmony, but it isn’t easy. Just as I need others to be patient with me, I need to be patient with myself as well. It is just the reality of life with a traumatic brain injury. It’s not a sprint, it’s a marathon.

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The Phrase That Helped Me Feel Grateful for My Life With PCOS

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This holiday season, families will gather around and reflect on how blessed and grateful they are. When people list the top things they are thankful for, it’s usually the regulars:

Friends.

A home.

A job.

Our family will do the same, I will anxiously await my turn…and then they will get to me.

I know what I want to say. I’ve been reflecting on this for some time. I have been trying to figure out how exactly to express the thing I am most grateful for. Instead I’ll likely joke and say “leggings” or “carbs” and life will go on.

But I want to tell you. I think it’s important. It is for me this year. (Before I tell you, I want you to promise to hear me out. It is going to sound crazy. But…trust me, OK?)

I am thankful for polycystic ovary syndrome (PCOS).

Yes. You did not misread. I am thankful for the condition that has wrecked havoc on my body, mind and life. Please understand I am not trying to lie and say I am glad I have this diagnosis. Chronic illness isn’t something you can just sugarcoat with positivity and smiles and make it seem like it’s anything less than it is.

It sucks.

I am certainly not sitting here trying to convince you to give thanks that something bad has happened to you. I am not thankful for losing my aunt too soon. I am not thankful my dog is sick. I am not thankful for the fatal crash I witnessed last week. I wouldn’t wish PCOS on another woman. If I was given the choice, I promise you I wouldn’t choose to have PCOS. If I woke up tomorrow and there was a cure for it, I’d be first in line. It is horrible sometimes. It has made for some bad, scary, trying and dark days. I remember one of those dark days. On this August day, I wasn’t grateful for PCOS. Curled up on the floor of the bathroom, the chills of the square bathroom tiles cold on my skin, I just lay there. In that dark moment, as I fought between uncontrollable sobbing and fighting back the sounds escaping my lips so no one would hear, I traced the tiles’ edges to make the time disappear. I wanted to disappear. As I did, I remembered something someone once told me:

“It’s a bad day, not a bad life.”

I sat up from that floor, and thought, “Shelby, get through the next minute. It’s just a minute.” I got through it. And thought, “I did it. Now what?”

I have come to realize it’s all in what you do in those “now what?” moments. It’s then when you have to decide. What’s next? It’s when you have to make a choice. For me on that particular August day, it was deciding to accept and face whatever “bad” day/pain/fear/situation arose. I would find something good. If I couldn’t find something good, I would find something valuable.

That day was the day I got online and typed in “PCOS Support.” I was shocked at how little information there was available. Even worse, in the support forums, it was all so sad and negative. Women talking about all the things and dreams and happiness PCOS was going to take from them.

Today, I am grateful for all the things PCOS has given me.

On those days I had to go school and face being called the “fat sister” by the senior boys because I’d rather cry in the bathroom than tell my mom about it, I learned to be resilient.

I’d like to say this played a part in giving me my wit and sense of humor. Being the “fat friend” wasn’t easy, so I learned to be funny instead.

I learned patience, while I waited for an explanation year after year for why my body was acting different or didn’t feel right. I stayed patient while my body failed me cycle after cycle.

And when I had had enough of feeling clueless about my own body, I became my own health advocate.

It’s really hard to love a body you don’t understand or feel comfortable in. It has been one of the hardest thing’s I’ve done, letting go of expectations of how I should look and hatred of my own body for not following suit, but I’ve discovered self-love. When you start to love yourself, amazing things happen.

When you love yourself you forgive yourself. Self-forgiveness led me to bravery in ways I wouldn’t understand. But I chose to believe things happened for a reason.

And this holiday season, PCOS gives me hope.

On that August day I felt hopeless. I can’t tell you why I had that early pregnancy loss that summer. I don’t know how I wound up feeling so alone and wanting to disappear myself, surviving by getting through minutes. I thought for the longest time that PCOS just wanted to take away everything good in my life. So I don’t know what possessed me to seek out support online. On any other given day I probably would have joined in with the other women feeling victimized and letting our diagnosis take away from our lives. But I didn’t. Maybe I was ready to accept my diagnosis. Maybe I wanted to help. Maybe I refused to let PCOS take one more thing from me. Whatever it was, I wasn’t looking back. And so I am grateful, because that day PCOS saved my life. (It just took a really roundabout explanation to realize that.) And when I get stuck in a “now what?” situation, I remember… it’s a bad day, not a bad life.

(To the amazing souls I have been blessed with through entering this PCOS community, I am grateful for you. I am entirely blown away every single day by the inspiring, remarkable humans you are. And to the souls who dare to share their stories even when it’s scary, who forgive and love themselves fearlessly and don’t ever quit, I’m grateful for you. You are an inspiration. Keep being brave.)

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The Decisions I Have to Make on Christmas Day With Chronic Pain

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It’s Christmas Day! For most people this stirs excitement for the upcoming events of the day. Family time, the scents of the tree, carefully chosen gifts, fresh baked treats and our favorite dishes for the big meal of the day.

For me, I think first about how dressed up I will get. Will I spend the extra effort to curl my hair and dress up my make-up? Fancy festive clothes or comfortable clothes? Do I push the envelope and try to wear some heels even though I know I shouldn’t? They would look better than flats with my cute outfit though. (My first anxiety episode usually kicks in right about now.) I give up and go with the more comfortable clothes because if I’m going to be in pain most of the day, why add to it by wearing uncomfortable clothes.

Running late, due to all the “rest breaks” I had to take while getting ready, we hurry to load the car with all the gifts and food and drive 30 minutes or more, depending on traffic, to our first destination. Do I take a pain pill now or do I wait until later in the day? If I wait till later, I can at least enjoy part of the day without being in a hazy fog. Although, if I wait too long, then my pain will rule the day and I won’t enjoy anything. I try, I really do, to enjoy the festivities. All the while, I’m trying to hide how bad I’m hurting or going outside in the cold air to try and soothe another anxiety attack without anyone noticing or commenting.

Now, how many houses do we visit? Do we focus on one side of the family today and try (knowing someone will get their feelings hurt) to move the other half of the family to Christmas Eve or the day after Christmas? Or do I push myself to go to both places in one day? Fight through the pain and anxiety attacks, knowing I will get no sleep that night? How long do we stay? Can we move things along without looking like that’s what we are trying to do? Not because I don’t want to spend time with everyone but because the less time I’m there the sooner I will be in the comfort of my own home. Then I can start dealing with the physical/mental aftermath of the day’s events. Tomorrow will be filled with pain meds, guilt, more depression and laying around while the acute pain runs its course.

Meanwhile, the frustration of my family shows on their faces or in their comments. The questions of “Why don’t you just have surgery?” or “Have you tried doing _____?”(cue filling in the blank with just about any suggestion you can imagine). Or, my favorite, “Hope you feel better soon.” I grit my teeth every time I hear that one! Even though I have explained to them numerous times that I won’t ever get better. I will always have pain. The degree of pain may be “better” on some days, but I will never see “before back pain” comfort levels ever again. I get their frustrations – believe me, I do! Yet no one is more frustrated about it all as much as I am. Dealing with chronic pain every day is more than frustrating; it’s debilitating. Physically and mentally.

All of that being said, last year my husband and I spent Christmas Day at our house, just the two of us. We split our time up between each side of the family. Doing the day before with one side and the day after with the other side. We asked them to please understand. Even though I am close with my family, I must say it was one of my favorite Christmas Days ever! We took our time waking up, had a nice breakfast, turned the fireplace on and relaxed all day. We enjoyed each other with no stress. We reflected on our past year and looked forward to the years to come with hope. Christmas music on in the background, we fixed an easy Christmas dinner for two. Then we opened our gifts and drank some wine in the dark with nothing but the Christmas tree and the fireplace adding a soft glow. It was wonderful and romantic.

Can we with get away with making this our Christmas tradition from now on without upsetting the family? I don’t know. Understandably, I can already picture the looks of disappointment and the sad tones in their voices. It is wonderful to be loved so much! Besides the fact that it kept me from pushing myself past my “comfortable point,” it was a more meaningful Christmas Day for my me and my husband. I finally enjoyed Christmas for the first time in forever because there was no stress, no toes being stepped on and no big mess to clean up! This also made the days leading up to Christmas more enjoyable because I knew exactly what the events of the day would be. For the first time in years I looked forward to Christmas Day with excitement instead a cloud of dread and depression.

I guess those of us struggling with limitations should try to make Christmas the best it can be for ourselves. We can try to include the old traditions, but we won’t always be able to make everyone happy and we need to be aware of our limits. So, while I stress over what I am going to wear on Christmas Day and where we will spend it this year, I wish you all a holiday season filled with comfort, peace and happiness!

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The Holiday 'Digital Divide' for Women With Chronic Pain

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Going into the holidays, I’m reflecting on the digital “divide” – and how we women with chronic pain may be more isolated than ever.

As a 34-year pain survivor and advocate, I’ve been given a lot of labels. The one that suits me best is that of being a communicator. I like good old-fashioned face-to-face and phone time. When I first heard about computers and email, I was horrified by their impersonal nature. In fact, I fought my life partner John tooth and nail over going digital, finally caving after a friend gave us a Mac.

When social media hit the scene, I got downright depressed. Not only was it digital, in my mind people were talking to “friends” they didn’t know about pretty much nothing. But the old “if you can’t beat ‘em, join ‘em” kicked in with the work at my nonprofit For Grace. In time, I learned to appreciate social media’s value as a platform to get the chronic pain word out far and wide.

Still, I resist. I continue to send handwritten cards to anyone who does something nice for me, I make phone calls as replies to emails, I write long-form posts on Facebook – and when journalists ask me to do online interviews, I push hard for in-person meetings.

While I see a valid place for digital communication with its fast, efficient vibe, I’m deeply concerned that it’s tearing our communities apart. We don’t have meeting places anymore, we’re staring at screens. Rather than conversing, we’re typing on tiny keyboards.

We’re perpetually looking down and away at machines, rather than up and at people. In short, I fear we’re losing what makes us human.

Besides depersonalization, digital communication is rife with misinterpretations. I’ve been hurt a number of times upon receiving emails from friends and colleagues that I took as angry, sarcastic or abrupt. Low and behold, when I personally addressed the sender, I’d misunderstood. On a screen, we don’t hear the nuance of a voice or see the look on a face that more fully communicates feelings and ideas.

Sadly, I feel we women in pain are more prone than others when it comes to this digital disconnect – as we’re often already isolated due to our physical limitations and personal abandonments. And it’s been my experience of late that even when a real-life opportunity presents itself, we seemingly have lost our taste, perhaps our ability, to engage in face-to-face communication.

Since the early years of For Grace, women have asked us by email, ironically, to start an in-person support group. They’re messages are desperate in their need to intimately bond with others who understand.

Recently, For Grace partnered with Leeza Gibbon’s CareConnection to do just that. In fact, we not only hosted support groups for women in pain in Los Angeles, we offered separate meetings for their caregivers. John and I were excited to spearhead and attend these meetings as we also need this connection. We arranged warm, inviting meeting spaces, great facilitators and refreshments – everything for women in pain to share openly and gain support.

Problem was, only two or three people showed up. And that was on the good months.

Call me old fashioned, but in my mind there’s an essential need for people to gather, to socialize. It’s how we’ve evolved and survived as a species. It’s unnatural and unwell for us to camp alone in front of screens, living virtually.

I’m concerned we as a society are becoming the title character in the book I just finished called “The Prisoner,” the fifth volume of Marcel Proust’s classic “In Search of Lost Time.” Albertine is increasingly trapped in her home by someone she delusionally thinks loves her. Are we being seduced by the addiction of our screens, and as a result, becoming their prisoners?

Like so many women in pain, the holidays tend to be a lonely time for me – and the virtual world is providing some love and comfort. After all, I am venting here digitally.

But I have a challenge for each of us, me included. After reading this post, let’s turn off our computer, tablet or smartphone – and during this season of “togetherness,” take a chance or two. Let’s invite a neighbor over for a cup of cheer, call rather than email or Facebook a friend, or volunteer in-person at a place of need.

Let’s all take a step back in time… to move forward. Let’s rediscover our human connection.

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