Wednesday, February 27, 2013

A touch of irony...

Going public with having ALS is made more difficult when you can't even say your own name (real or assumed), which leads to this funny story…  

Yesterday I went to have flyers printed.  The first employee who helped me assumed that I was deaf.  She didn't know sign language so she did a lot of pointing while talking, which is pretty common.  I tried explaining to her that I have ALS and am not deaf, hence the flyer.  Apparently, however, as soon as she "realized" I was deaf, she no longer listened to me. 

While waiting for my order to show up in their computer, Employee One went to help someone else.  Before moving on, she told Employee Two what I needed and then, turning sideways, explained that I was deaf.  As soon as Employee One walked away, I tried to explain to Employee Two that I am not deaf, I can hear just fine, but that I have ALS which affects how I talk.  While saying this, I was holding up the flyer and pointing to the "Walk to Defeat ALS" logo to try their method of communication on them - pointing while talking.  Unfortunately, she acted exactly like the first employee, and my words fell on deaf ears once again.  I had to laugh a little at this point.

After paying for my order, with lots of pointing at the register on their part, I asked if the store manager was in.  The employee pointed to him, standing 6-feet away, but made no effort to get his attention for me, which I found a little funny after the "deaf" treatment. 

With a smile on my face, I walked over to him, introduced myself, showed him a flyer, and gave him my spiel about the walk.  Having the recent experience with his employees in mind, I tried to be very clear that I was working to raise awareness in the community so people would understand that I have ALS and am not deaf.  He listened to me, nodded politely, raised a finger to me and turned to his computer.  A minute or so later, he asked another employee, a young man, to tell me that he was looking to see if The ALS Association was set up with their company to receive donations.  The young man looked confused, but turned to me and said "He wants me to tell you…".  The manager stopped him and said "No, she's deaf".  The young man then understood and started to sign.  I interrupted him by signing "I am not deaf, I can hear but I have ALS and cannot talk well".  At this point, with the young man interpreting, it all became clear to both of them.

The irony is that the only person who could understand that I am not deaf was the one person who could understand the language of the deaf. 

I am happy to live in an area where there is a large deaf population and I love that businesses make such a positive effort to communicate with the deaf members of our community.  However, now that I am trying to make this huge effort to explain to people that I have ALS and that I am not deaf, I find it ironic that some just won't listen.

I need to say here how much I appreciate that the manager was paying attention to me and the flyer even though he couldn't understand my words.  He took my request seriously and did not, in any way, blow me off for lack of understanding.  After looking for, but not finding, the organization in their system, he wrote out the phone number AND web address (knowing I wouldn't be able to call) and explained the process for getting on their donations list.  He was a class act and I respect how he treated me.  He didn't understand me, but he clearly made every effort to communicate with me and he made me feel "listened" to.  Well done, Sir.

This is just one small taste of the twysted ride of living with ALS.

Monday, February 18, 2013

Going public...

This past week I decided to participate in the Walk to Defeat ALS in my area.  I am now really excited but, I have to admit, the idea was intimidating at first.  That may seem silly, considering what I am living with every day and the fact that it's just a 2 mile walk after all, but there is more to it for me.

Making this decision means "going public".  What is more public than writing a blog open to the world? you might wonder and you'd have a good point.  The thing is, even though I freely share my story with the world, the people I see everyday in my neighborhood and community do not know my story.  The baristas at Starbucks who know my name and my drink order have not been aware of the reason behind my struggle to say "trenta black iced tea with no water and no sweetener".  (It's a mouthful under normal conditions but imagine saying it with a minimal ability to speak).  The kind pizza shop owner who already knows my order when I call and struggle to say "I want to order for pick up" has no idea why its so hard for me to get the words out.  The librarian who signs to me thinking I am deaf, an often correct assumption to make in our community, does not know the real reason that I speak this way.

Taking on this walk means facing these people whom I regularly share a smile with and sharing the truth behind why they know me as Sam.  It means saying out loud that I have ALS, and then explaining (briefly) what ALS is.  It means no more hiding from other people's sympathy and concern.  It means admitting I have a weakness, an illness.  It means doing all of this face to face and not behind the keyboard, which is a different thing completely.

So, I am Walking to Defeat ALS on April 6th in Jacksonville and my family and friends in California are joining the walk on April 13th in San Luis Obispo.  I hope that you will join my team, Sam's Twysted Ride, on either coast to help spread awareness and raise funds for pALS assistive care, research, and ultimately, to find a cure for this devastating disease.  Please help me now so that, in the future, no one else will have to go public with this news.

Thank you so much for your support!!

Friday, February 15, 2013

Identity theft or evolution?

Lately I've been thinking a lot about my identity.  For most of my adult life, when I have met new people, one of the first questions asked is "What do you do?".  Over the years I have answered with my job description or title including everything from Student, Sales Associate, Administrative Assistant and Operations Officer to Wife, Mom, Volunteer, Student (again), and Library Manager.  Today, I am still a Wife and a Mom and while my joy and pride in those aspects of me are still full, my abilities have changed and there are limitations to some of the things I can do.

In the past year I have had to give up my new home (in CO), my new career, my ability to speak and to do simple tasks.  I need help with many of the things it takes to get through a regular day now.  In some cases, I have just made adjustments like drinking through a straw, buying silverware with bigger handles, buying the "zipper" style ziploc bags instead of the pull apart, and buying shampoo and conditioner bottles with pumps on them rather than squeeze tops.  For me, these things are not invasive and allow me to continue to do the simple things that are so easy to take for granted.  However, there are other things that require me to ask for help.  This is such a challenge for me because I am not used to needing or asking for help.  Fortunately, I have someone on hand who is willing and able to help with anything I need.  The problem for me is needing to ask. 

I have always been independent, strong-willed (stubborn), and yet adaptable to change.  I love to learn, to get lost in a story (real or imagined), and to sink my teeth into a good project.  I like to work, to drive, to talk, to eat, and to be social.  I like to cook, to walk, to travel, and to swim in the ocean.  These are all a part of who I am, but as some of these things slip away from me, I feel that I am losing pieces of myself, that ALS is stealing my identity piece by piece.

Then, there are the things I have gained.  Like my voice.  Not the one I speak out loud with, that is quickly fading away, but the one where I write what I think and feel and I share the challenges and joys of living with ALS and being Chrystie who is now also known as Sam.  The voice I am using to make others aware of what ALS is and what we need to do together to help find the cure!  I am by no means a professional writer, but I try to write from my heart and share just enough without sharing too much and truth be told, I love it!

I could sit by and let ALS rob me blind, so to speak, stealing all that I have left of who I am OR I can adopt a new identity for who I am today, incorporating the part of me that is ALS with the person I have always been.  The decision is easy.

I am Twysted Sam.

Tuesday, February 5, 2013

A drop in the bucket (list)...

After seeing the movie The Bucket List with Morgan Freeman and Jack Nicholson years ago, I remember talking about it and even making a mental list of my own bucket items, but at the time I never actually wrote anything down.  Truly, it just didn't seem important enough.  I knew that the things I wanted to do could change a hundred times over the years so why limit myself to a list when, instead, I could just be open to whatever came along in life?  One example is the time I won a single ticket to the first game of the 1988 World Series between the LA Dodgers (my team) and the Oakland A's.  Yes, this means I was there, in person, to witness Kirk Gibson hit the winning home run!  A great moment in Dodgers history and I was there, but I never could have planned that.

At some point in the first month following my diagnosis, I decided to sit down and really try to create a bucket list thinking it would give me a goal to focus on.  The first few items were fairly obvious for me, things like dance at the Eiffel Tower in Paris, ride the London Eye, drink champagne in France and visit Venice and Rome.  However, all the really important things involved having more time to spend with my family, to see my son grow up and reach his life's milestones, for him to find true love like his dad and I have, and to become a man he is proud and happy to be.  Really, those are the only things that matter on that list so, once again, I didn't bother to write them down.  These are things I hope to be a part of, hope to watch unfold, but there is no way to really know what life will bring and I still don't feel the need to limit my options or worry about what I could miss out on because of a "what if"…. 

I also realized that, other than more time, I have already lived the majority of items that might be found on a bucket list.  I learned to SCUBA dive and to snowboard and to surf, I rappelled from rocks and mountains (albeit smallish ones), and I went para-sailing.  I have been to 44 of the 50 United States and to 12 countries outside of the US.  I have been to the top of the Empire State Building, the Seattle Space Needle, and the St. Louis Arch.  I have seen amazing and beautiful works of art by some of the great masters in history as well as newer artists whose work just spoke to me.  I have been to Broadway plays, to concerts, to National Parks including Yosemite, Grand Canyon, and Yellowstone.  I've traveled by airplane, train, car and cruise ship.  I learned to ride a skateboard, a horse, a motorcycle and I've driven some of the nicest cars on some of the most beautiful roads in California.  I made good friends from coast to coast and have shared fun times and experiences with them over the years.

I have traveled to beautiful places, historic places, places of wonder, and I have definitely seen amazing sites.  I have met incredible people from different cultures, listened to their stories, and enjoyed their history.  I have been daring and had numerous fun and exciting adventures.  I have eaten exotic foods, I swam with wild dolphins and sharks and sea turtles and sting rays and eels and more tropical fish than I can count, all out in the open oceans.  I followed my dreams and had two careers that I really enjoyed.  I met and married the man I love and have shared so many amazing moments in this life with him including the best adventure of all, parenthood.

Most importantly, I have truly lived and loved and continue to do so each day!  I'm not willing to limit my dreams or experiences to a list that I wrote out of fear of missing out.  One thing I know for sure, I will never feel that I have missed out on this life!  Instead, I made it happen.  I walked through the doors that opened before me (and the ones I had to kick down), I took chances on new opportunities and embraced change rather than fearing it.  I cannot see any reason to stop now, so I will stay aware and available to new adventures until I am done and will continue to make life happen in ways that are meaningful to me!