I was asked not long ago what I mean when I say "I am fighting ALS, I am not giving in." The person was asking because she knows there is no cure for ALS and treatments are limited to making the patient "comfortable" as their body is ravaged by this horrible disease. So, she asked, knowing that you are living with a life-limiting illness that will be the eventual cause of your death, what are you fighting and how do you fight? These are valid questions and while some of the answers came to me immediately, others took some thought.
I understand that it is easy to feel, if you are fighting a losing battle, what is the point? For me, the point is that today, I am alive. For me, the fight is about living. I choose to focus on living every day, not on how I will eventually die. I fight against the thoughts that could pull me down into that dark abyss of depression where it is next to impossible to crawl back from without serious help, motivation, and often, medication. I fight to keep doing the normal, mundane things that I have always taken for granted. I fight to keep communicating one way or another. I fight to be present in every day, to love and share myself with those who love me. I fight because giving up is just not my way.
At the same time, I am realistic. I have already lost most of my speaking ability and I know that I am losing my upper body strength and dexterity. I feel the changes in my hands, wrists, elbows, neck, and shoulders and I have to make adjustments and allow others to help me do some of the simplest things like cutting my steak or washing the dishes. This is not to say that I don't stubbornly hold onto the idea that I can still do everything the same as before because I should be able to, but facing reality is not a perfect science. Its funny how important the ability to wash the dishes, fold laundry, or comb your own hair becomes when faced with the truth that you won't be able to do them anymore.
As the new year began, I started thinking about the new ways I will find to keep fighting for my strength and purpose to live. I've also been thinking about what I want to leave behind when the time comes. One thing I can do now is to help myself and others affected by ALS, either personally or through someone they know and love. Over the years I have supported causes that are important to me both through volunteer work and donations. I realize that it is time to stand up and support the cause that is now my cause.
I plan to be vocal, in whatever voice I have available to me, to spread the word that ALS must be stopped. We need even better technologies and less expensive options to help those who are losing, or have lost, their ability to communicate. We need to see more open ended drug trials so patients who are seeing improvements can be allowed to continue with the drugs following the trial while FDA approval is being sought. We need better treatments, we need to slow the progression of the disease, and we need to find a cure today! I am asking for you to use your voice as well. Please share my blog with your friends, family, neighbors, co-workers and classmates, PTA and book club members, your Bunco groups, your teammates and fellow commuters, and anyone else you know to get the word out that we need all the help we can get to make this fight winnable!
I also plan to start by raising $5,000 to support the ALS Association as they support those of us living with ALS. The ALS Association is a great organization that immediately jumped in to offer help, education and support to me and my family following my diagnosis. Here is the link to my personal Community of Hope page http://webfl.alsa.org/goto/twystedsam. I hope you will visit it and help to spread the word by inviting everyone you know to also visit and learn more about ALS and what we can do to make a difference today!
Thank you, from the bottom of my heart, for reading this blog and for all of your support, love, and encouraging comments along the way! Its harder than I thought to write some days, not just from a physical stand point, but because it takes a lot more of me emotionally than I expected it would to put myself out there during this journey. There are times when I want to stay in bed and just dream because in my dreams I still talk clearly and I am not fighting ALS, I'm only fighting zombies which is way easier! Instead I get up and find happiness and love in each day which makes me want to continue to fight…so I fight!