Saturday, February 23, 2013

I have to...

For anyone a little out-of-the-loop on my current happenings, here's the gist of it:

I'm going to school full time, and on the other 4 days a week, I'm interning at the MGH Aphasia Center. Aphasia is an acquired language loss due to a traumatic brain injury, primarily due to a stroke although there can be other causes as well. It is the loss of one's use of language, not the loss of intelligence. I have 9 clients whom I see 1-2 times a week each. It's extremely busy and time demanding work, but this semester has taught me quite a lot about gratitude.

One of the classes I take is titled AAC, which stands for Alternative and Augmentative Communication. There are some individuals, young or old, who due to disease or disability do not have the ability to speak or communicate effectively and efficiently. They may only have the ability to produce a laugh, grunt, or vowel sounds, while others may have speech but highly highly limited output (only a single or a few words per minute, where the typical rate for most speakers is around 128 words a minute). So... they turn to alternative means of communication.

As a class, we had the opportunity to go to Children's Hospital this morning. The director walked us through the facility, showing us the many devices they have available there, and we got hands on experience with any we wanted to try. Amazing chance. Who get's to have a private tour of Children's and be invited to mess around with their equipment?! The 'machines' I find the most fascinating are those utilizing eye-gaze technology. Whether with a communication partner or a computer, there are methods/software that allow an individual to use the movement of their eyes to communicate. Through a series of patterned eye movements, blinks, etc. the individual can select letters, words and items to construct a sentence and communicate with those around them; something previously unavailable to them because they simply do not have a functioning body with which to use their voice.

When's the last time you thought about how blessed you are to have a voice? To be able to say hello in the blink of an eye? Some people have to spell it WITH the blinks of their eyes. Not easy, as I can now attest to, having tried it myself a few times.
~Be grateful for you voice, for the ease of it, what you are free to express, and for the unconscious daily use of it at your disposal~

For the title of this post...

One of my clients had a particularly devastating result of her stroke. She not only acquired Aphasia, but what is called Apraxia as well. In layman's terms, Apraxia of speech is like a short circuiting of the signal from your brain to your mouth. You know what you want to say, but 9 times out of 10, you just can not get your mouth to follow the commands of movement to properly articulate the sounds and words. It's like the signal get's jumbled up along it's path from the mind to the mouth.

I cannot imagine the frustration this would bring, especially for those who can hear themselves speak and KNOW what they are saying is coming out wrong. {Imagine wanting to say hammock and hearing yourself say, "Hammonger. No, hurbinger. No, babock!"} It is most frustrating to sit across the table and simply be the person who has to watch someone with this disorder. And then realize the whole reason they are sitting at your table is because they have come to YOU for help. So humbling.

In the most recent session with this client, we both reached a point where we looked at each other and knew we needed to stop our therapy task and take a moment to just 'be real'. I understood her to say (note* I don't say 'she said' because sessions tend to be a great deal of gesturing, single words, guessing and probing for clarification on my part, and me taking the clues I get form her and asking her, "are you trying to tell me a... person? place? number? ... etc"). So I understood her to say she was frustrated and tired of not being able to speak. She knows what she wants to say, and it comes out all wrong. She spent a good minute or two attempting to write the date of her stroke then the current date (we are encouraged to allow them time to speak and write because most people in their lives get irritated and impatient and don't allow them the time and understanding to let them get the words out). She intimated by pointing between the two and saying, "how come? Can't", that she doesn't understand why after all this time she still can't do what she used to. She can't spell anymore, reading is very difficult, and speaking is amazingly difficult both emotionally and physically. She then repeated, "how come?"

Tell me, how do you answer that?

She then said something that made us both cry. She gestured playing the piano and then the harp and said, "I have to. I have to gen (again)". She loved the piano and the harp. Now she can't play. Her brain doesn't sent the right signals to her hands. Growing up in a house of music, mama always playing the piano, Ty boy always singing or playing bagpipes with daddy, Call and Chase always playing music... I understood that have to better than she knew. There are certain things in all our lives that we feel we have to do, because they're a part of us and we need the 'doing of them' to feel like us.

I had to play the role of therapist and explain through my tears about the realities of her situation, the potential for progress, but the realities of the Aphasia never going away. I'm not a fan of feeling so cruel; to sit across the table from someone and be the one who has to tell them "You will always have Aphasia. It's never going away. You know this, right? We can work and hope for progress... but you will always have Aphasia." Some clients don't realize this. It seems astounding, but it's true. I don't feel I have the right to cry, cus I'm not the one with the loss. But some days? It feels almost as if I have the loss too. I love working with these people, and can't help but take on the emotions of each of them, their highs and lows of their days as they work through it all. And the shouldering of responsibility to try to help them, to plan for their sessions so their time is useful is very humbling.

I at least have the added unique blessing of understanding I have a Father in Heaven who knows my clients' minds and the new rewiring of them all. I've sent up my fair share of mid-session prayers, praying for understanding when the individual is trying so hard to tell me something, and also praying for guidance, knowing I may not have thought of every strategy to best assist my clients in speaking, but my Father in Heaven has... and he can and has enlightened my mind in the moment I've needed it because He wants, like I do, to help~

Sunday, February 10, 2013

Happy Snow Days*

A new appreciation for, "The calm before the storm."

 Sleep tight! Wake up to...

... Snowy Wonderland*

There are two cars underneath there. I know...

Tried to trapse over to my car to see the damage. 
{Daddy recommended I shovel off as much snow as possible before it got icy}

Making it down the steps and to the street was nothing short of a miracle. 

WELL over knee deep,
 so I didn't even attempt the impossible.
(Or what I thought was impossible. See below~)

 I walked over to a friends house on semi-cleared and fully deserted roads. Then planned to stay pretty much tucked safely inside in sweats reading this A-Mazingly adorable book a friend brought over the day before, "In preparation for the storm" he said. Helps when you know awesome people~

But back to "The Impossible --- or not so impossible" task of clearing the snow*  

 I like to think I helped. But really it was ALL my guy friends who insisted they come over and dig us out that night, cus to wait till Monday would be a disaster. They did things I could never, would never do in clearing out the snow. Plus, they'd already dug out their own home and another friend's home. I was prepared to just let nature take its course and pray we'd have a miraculous heat wave of 80 degrees and all the snow would magically melt off and away. 

We took a dinner/pizza break after the first 2.5 hrs, (small payment for what they'd done), then they went back out to finish the job.

We DID manage to have a little fun, though. 

It's not every day you get to:
~ Shovel yourself out of Blizzard 2013, feeling like you've finally earned the right to say, "I know" when people tell you about Boston winters.
~ Shimmy through a snow-tunnel in your drive way. Thank you Matt.
~ Finally meet 3 of your neighbors, after you've been living somewhere for 2 years.
~ Drive a cop car after he gets stuck in front of your house and asks you to drive as everyone else pushes.
~ Subsequently be told by your little brother, "You can just die now," because in his book, my life has reached it's pinnacle of purpose now that I've driven a cop car.
~ Hold church in your friends' apartment when church is canceled. Thank you Bishop.
~ Realize how grateful you are to see a side walk, steps, your car, or that the heat hasn't shut off, yet.

~What a difference a day makes~

Happy Snow Days*