It was a year ago last month that the Ear/Nose/Throat doctor referred me to a neurologist. It was a year ago last week that I had to walk into my bosses office and explain that my breathing and speech had deteriorated to the point where I couldn't continue to do my job properly. It was a year ago this week that we packed up our stuff and drove to Florida so I could breathe easier and we could seek the best medical care. It was a year ago next week that I had my first appointment at Mayo Clinic's Neurology Department and started on the long road to a diagnosis.
A lot has happened in this past year. Some good, some bad…but mostly good. The truth is, living with ALS really sucks because you are living with a life-limiting illness that slowly robs you of the use of your muscles, and in my case it has started with the bulbar region affecting my speech, eating and drinking. On the other hand, there are so many positives that have come from this past year that it is difficult to stay focused on the negatives. Some of those positives include:
I moved away from the cold of Colorado, which was really hard on me for reasons I didn't understand at the time, and now live in a much warmer climate where I can walk to the beach every day if I choose. I'll admit, the summer temps get a bit too humid for me some days which can be a challenge, but that's why they invented air conditioning.
I get to spend every day with my boys. At least part of almost every day is spent laughing together, and that is worth more to me than all the riches of the world.
I get to spend time with my Dad and Lisa. We have shared holidays, special occasions, laughter and hugs, and the regular kind of every day moments that can mean so much together because we live in close proximity, something that hadn't happened in a decade.
I spent a few days with my mom, my aunt, and two of my cousins in Orlando for some fun and laughs. This trip was significant for me, not only because I got to see and hug these people I love and who love me, but because I didn't let my fear win. Part of me was afraid to make the two hour drive alone knowing if anything went wrong, I would have little hope of communicating clearly. I was also afraid to let them see me this way, knowing it would make them sad, and me too. Still, in spite of the fear, I went and it was good.
I am writing, something I have always dreamed of doing but had little time or confidence to make it a reality. My fingers still work well enough to type and I will take advantage of that for as long as possible.
I learned a new language that I put to use in my everyday life to make communication easier for me and those around me. I always thought I would learn Spanish, I even took two semesters of it in college and had just started with the Rosetta Stone program before my voice became too slow and slurred to be understood. However, it is Sign Language that has become my communication savior and for that I am so grateful!
I tried a new hobby - pottery! This has been a fun and creative outlet that lets me spend time working with my hands, getting messy, making art, making mistakes, and taking time out from thinking too much.
I have found new ways to contribute in the world as old ways have slipped away. Instead of volunteering at the library story time, I volunteered with the Turtle Wash Back Program, walking the beaches after storms to look for and rescue baby sea turtles trapped in the wrack line. Turtles do not require me to talk, just my keen observation and patience as I walk the beach's wrack line a few miles at a time.
My sense of humor has become stronger, I think, in the past year. I have reclaimed some of my snarky-ness that I had put away when I became a mom and, later, a school employee. In my household, it makes the laughs that much more frequent and I love to catch my son off guard when I make a joke or comment he wouldn't have expected from me.
I have spent this year in the arms of the man I love, feeling his strength support me, his love bolster me, feeling cherished and desired and brave when I needed to most. I didn't completely know what I could expect from myself when I found out I was facing this devastating illness but without a second of hesitation, Dan has been at my side, never allowing me to doubt that we are in this together. He has the most amazing strength through all of this, and he surrounds the three of us in it. I sometimes don't know how he does it, but it seems to come so naturally that I know it is just a part of his make up, of the incredible man he is, the man I fell for so completely all those years ago. I don't know how I got so lucky, but there is no doubt that I am the luckiest woman in the world.
ALS takes so much from those whose lives it invades yet I know I can do this because I know I am not alone. I feel it is my responsibility to shout, in whatever voice I have, that I am standing strong, I am speaking out, I am trying to help find a treatment and a cure, I am choosing life and love and, as long as I am able, I will hold my hand out to others like me who need to know they, too, are not alone.