Sunday, March 17, 2013

Graphic depiction of ALS...

As most of you know, I like to read.  I have always loved to read a good book but a few years ago I discovered the enjoyment of reading blogs.  Like books, there are good ones, bad ones, some that are outdated and some that are even better than the cover suggests. 

Since being diagnosed with ALS, I have gone back and forth about reading blogs relating to the disease.  As the author of one such blog, I can tell you that not all the posts are happy, light-hearted, funny, or inspiring.  Not here or out there in the web-o-sphere.  Personally, I just try to keep it honest with a hint of my "life is good" philosophy whenever possible.  Of course, I'd like to say that not every day in my life is about having ALS, but that is less and less true.  That doesn't mean every day is bad, certainly not, but ALS does slow me down at every turn and is a part of just about every decision I make, in one way or another.

Recently, I came across “Sarah’s Story”, a public service announcement about ALS (called Motor Neuron Disease or MND outside the US) sponsored by the UK-based MND Association. 

Sarah Ezekiel was diagnosed with ALS/MND at 37 years old.  She was married, had one child and was 7-months pregnant with her second.  "Sarah's Story" is a graphic video showing what ALS/MND feels like as it robs a person of their voice, their strength, their muscle control, their breath, their dignity.  It was determined to be "too shocking" for the general public by Clearcast, a watchdog organization, and was banned from British television.  This was in 2009 and Sarah was 43 years old.

On this blog, I share MY feelings and experiences about living with ALS but this video cuts to the heart of it and there is no hiding from what you see.  I agree that it is shocking, and its scary, and the first time I saw it I thought it could double as a horror movie trailer, but it is real and I not only have felt some of it myself, I have seen it in others living with ALS. 

I am posting the video and asking you to watch, but only if you feel strong enough.  If you don't feel up to it, there is no judgement from me, the choice is yours.  I would like to hear your comments and thoughts if you are willing to share them, so please post them here.  Is this what you thought ALS was like?  Or did it scare the bejesus out of you?  Or both? 

Sunday, March 10, 2013


There is a powerful moment at the end of the movie Braveheart, just before the executioner takes his final swing.  William Wallace (played by Mel Gibson), spent from the torture he has endured, gathers his last bit of strength to cry out "Freedom!" in a voice that you think is going to be weak but comes out as a rebel yell.
This moment has been replaying in my head lately (but not in a crazy, I'm hearing voices kinda way).  In an odd way, having ALS provides a sense of freedom that I have never experienced before.

For the most part, I have spent my adult life unconcerned with what people think of me or my actions because I know that I live life my way and with a solid moral compass of my own.  However, there are certain things I have either shied away from or flat out refused to try or participate in, mainly out of fear or stubbornness.  I think it is fair to say I am a person who expects a lot of myself and, therefore, I am my own harshest critic.  Since receiving my diagnosis, I have let the walls fall away and have allowed myself the freedom to try new and different things.

Earlier this week I had my first real sushi meal.  I've tried a small bite before to make my husband happy, but this time I went all out.  I ate salmon rolls, eel, tuna rolls, a tempura fried crab roll, yellow fin tuna and an avocado/tuna roll.  If you know me at all, you know that I simply do not eat seafood, cooked or raw.  However, I faced this meal with the freedom to allow myself to enjoy it, not holding my nose and making scrunchy faces … and it was good!  I liked it, for real, and I am excited to try more new fishy foods next time, which will probably be this week if I know my boys.

My first oil painting
Last week I picked up a paint brush, watched a couple of videos on YouTube, mixed some oil colors, and put paint to canvas to see what would happen.  No judgements, just the freedom and willingness to accept whatever the end result would be.  The first one is not a masterpiece, but that wasn't the expectation.  I had fun and shared some quality time with my son while experimenting with a new creative outlet for both of us.
Elephant Leg Vase

I have been making pottery for almost a year now which I have really enjoyed.  Yesterday, the studio (Dixie Pottery Gallery) had a big sale and students were invited to include anything they were ready to part with in the sale.  My normal reaction would be that my pieces wouldn't be good enough for people to spend money on.  However, I decided to give freedom a chance and placed five pieces for sale.  Of those five pieces, three sold and I am oddly proud of that. 

My Walk to Defeat ALS flyer
 On Tuesday nights, I take a sign language class at the public library.  On the first night of class, I went prepared with my iPad mini and my app ready to explain that I could hear fine but I am not able to speak clearly.  I was so excited to find out we weren't going to be talking in class at all so I wouldn't stand out because of my voice (our teacher, a nice young man who is deaf, does not need to "hear" us to teach and listen in sign).  However, now that I am going public, I knew it was time to step outside my comfort zone and share a little of my story with the class.  Last week, with the teachers permission, I handed out flyers about the Jacksonville Walk to Defeat ALS and invited the other students to go to my team page on the website to learn more and, if they are interested, to walk with me.  This week, one of the ladies brought her niece, a student at Flagler College, to class to learn a little sign language and to ask if she could interview me for her class project.  I was honored, of course, and proud to have another opportunity to spread ALS awareness, all because I was willing to share my story with people who would have had no idea otherwise.

On Wednesday, I had the oil changed in my car.  In the waiting room, a woman moved over a seat so Dan and I could sit next to each other and I said "Thank you", both with my voice and in sign language.  This is pretty much my standard now since my voice is so unclear.  What I didn't realize was that the woman was deaf.  After I sat down, she asked if I was deaf as well.  I explained that no, my voice just doesn't work from an illness and I have learned sign to communicate.  We had a very nice, long conversation and when she left, I gave her one of my cards with my blog address on it.  I didn't tell her I had ALS because there are times when it is not appropriate, when it just isn't all about me, but as part of my commitment to spread ALS awareness, I was happy that I had a card to give her, allowing her the opportunity to educate herself at her leisure, or not … freedom.

Caramel Macchiato
Finally, at Starbucks yesterday, when I was ordering my regular black tea, I made a last minute decision to order a tall caramel macchiato too.  Again, if you know me at all, you know I do not drink coffee, not even fluffy coffee drinks, not ever.  In fact, it has been said that iced tea runs in my veins, and it might be true for all I know, but I thought "What the hell, you only live once, right?" so I tried it.  Now, for you real coffee drinkers out there, I realize a caramel macchiato is more like dessert to you than coffee, but it was coffee to me and I just finished another one this morning.  I do think that tomorrow I will try something a little less sweet and see how that goes…maybe a cinnamon cappuccino?  Is that a thing?  I'm sure I'll figure it out with the help of the fabulous baristas at my local Starbucks…they are all rock stars by the way!

There are other examples I could share, but I think you get the idea.  The definition of ALS is to lose control of all voluntary muscles and, therefore, become completely dependent on machines and other people.  Yet, in the process of living with ALS, I am finding, of all things, FREEDOM!