Sometimes it Takes A Few Lost Words to Find Your Voice

I’ve gotten to a point where it’s easy for me to laugh at my memory lapses. The journey to accepting this condition did not come without massive disappointments. And even now, there are still few situations and people’s reactions that make what I go through extra challenging. In most cases, people aren’t even aware that their comments add to the pains.

Recently, a guest at our house dismissively referred to what was perceived as my inattentiveness and struggle for words as possible signs of dementia or early Alzheimer’s. I couldn’t react to what she said to me. I was shocked and hurt. I wanted to scream and tell her, “You’re not a specialist; what gave you the license to diagnose my type of cognitive dysfunction in such hasty and reckless manner?” I mean, “Where’s the grace, or at the very least, where did your basic social courtesy go?” Instead, I just looked away. The thing is because I already knew I have a particular type of cognitive dysfunction, I compensate by being extra attentive. What was perceived as inattentiveness was me trying my very hard to make connections in my mind, so I could find the words I lost.

So, while I go through this journey, the last thing I need is somebody adding to the scare that I already battle with every day. Telling someone who deals with Fibromyalgia (FM) or any chronic disorder that shares similar cognitive dysfunctions that she probably has dementia or that she might already have an onset of Alzheimer’s is not only insensitive; it’s also irresponsible. And should I have dementia or Alzheimer’s, I wouldn’t want to be treated in such acerbic manner.

Thoughtless remarks like that tend to second guess my decision to come out in the open regarding my health condition. It’s isolating. I don’t expect people to understand Fibromyalgia. I’m still trying to understand this chronic pain disorder myself. Being less aware of a certain health condition is one thing, but throwing out uncouth remarks over another person’s plight, is like I’m being forced to smile widely while my spirit is being shredded to pieces. But it is what it is, and so here I am. With bruised spirit and yet I’m still standing. Still writing and sharing what I go through as a fibromite and a spoonie. Still reaching out to those who are also afflicted with chronic conditions and letting them know that they’re not alone in their walk. We shouldn’t be forced to isolation. And while encouragement brings us hope, we should use terrible interactions to fuel our desire to bring light and voice into our less known, fibro flare-inflicted world. Nothing’s wasted.

Whether it’s a muscle spasm, abdominal discomfort, or headaches, I can tell you that there’s not a second that I don’t experience any form of pain and discomfort in my body. To put it in perspective, that’s going through 86,400 seconds of daily pain and discomfort. I’m not even talking about flare ups. However, more than the pain, what initially concerned me more was losing my memory. It scared me, so much so that I started quadrupling my Words with Friends and Sudoku games. Having memory losses is not my fault nor is it my wish to have. I take Vitamin D, B complex, and Magnesium supplements. But what I have is not something any supplement or brain games could cure.

Last night’s incident was just one of the many instances where I had unfortunate memory lapses. I don’t forget situations or events. And I process information relatively fast. I’m also quite excellent at remembering specific tasks. But I would often catch myself struggling at remembering familiar names – names of people I know very well and common things like paper towel, forks, car key, and etcetera.

So, here’s what happened. I scheduled a call to a dear friend at 7:30 PM, but I failed to do that. It wasn’t because I forgot to call. I knew I had to call her, but I couldn’t remember her name. I knew who she was and why I wanted to call. It was heartbreaking. There I was, staring at my phone, foolishly flicking through my list of Facebook contacts for a name I couldn’t remember and hope that doing so would help me connect a photo to a friend’s name that I somehow lost. I had a strategy, and it included narrowing my search with friends I interacted with for the past hours.

I was going through a short list when my phone rang. It was her, my friend I was scheduled to call! A very dear friend. Thank goodness! We exchanged jokes. I told her I was already getting to the process of calling her but only that she beat me to it.

I don’t like telling people my form of cognitive dysfunction because I don’t want anyone diminishing my value as a person. I don’t like looking at people’s shocked or ridiculous reactions. I don’t want people’s pity or their unwarranted diagnosis. But if I didn’t share this part of me to the world, then I might as well move to Antarctica. Because keeping this a secret is the same as cursing myself to a life sentence of isolation. Although, sometimes, I’m not sure which is worst – moving to  Antarctica or subjecting myself to the occasional tortuous reactions of few people, which could also be isolating in certain ways.

Every day, I would remind myself that it’s okay to speak out. And it’s okay not to be okay. It’s okay to put a voice and a face to a less known condition that is called Fibromyalgia. It’s okay to let others know I’m not always okay, and that this does not make me less thankful or grateful for the many blessings I get.

Spotlight on Grace, the Sometimes Misrepresented Divine-Inspired Value

Here’s a good link about Fibromyalgia and memory failures. In gist, the research mentioned in the article showed that there is a cognitive dysfunction in FM. The paper says, “And this is not due solely to psychiatric disorders such as depression, or to other symptoms of FM such as sleep disturbance, anxiety or fatigue. On the other hand, cognitive dysfunction in FM is related to pain.”

Yes, the 86, 400 seconds of constant daily pain requires some cognitive effort which probably contributes to the decline of some mental functions, in particular, short and long term memory skills.

To my family and friends who bring me hope by embracing me with their grace, love, and acceptance, thank you. To my fellow fibromite and spoonie, there’s always a beautiful side to our new normal. Sometimes, it’s hard to see it. When that happens, let’s take it upon ourselves to recreate one by sharing our story, one spoon at a time. 

And to help me enjoy all of 2017, I am using the lessons of Philippians 4:12 as my marching shoes. 

 

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