Did you know that May is ALS awareness month? If you have been reading this Blog you probably already know this, but if you forgot, here is a reminder. I pretty much see everyday as ALS awareness, not just one month a year. It’s awareness because we live an ALS life. Every moment. Every hour. Every day. I’ve tried to remain upbeat, for the most part, and tell you about ALS sprinkled with a little sugar, or humor in my own little way. As I was trying to fall asleep last night, I got to wondering if people really understand this disease. I am not talking about the PALS and the CALS, but those that only get a passing glance in to the world of ALS, like a passing feed in Facebook. Scroll, Look, Pause, Move on to the next.
Today, I am out of sugar. Oh, not to worry, I will tell my good friend Alexia to put it on the grocery list and she will correct me to tell me she added it to the shopping list, but it will be added and we will get more for future posts.
What ALS means to this caregiver. First, it sucks!, I absolutely hate what it has done to my family. When I think about what this means to us, my mind jumps to the future. Will my future have The Big He in it? How on earth will I live without him? He has been my other half, my better half for my entire adult life. We have been together almost 28 years, married almost 27 years. How do you suddenly live your life when a part of you is gone? It scares the hell out of me. Oh, my head tells me I will survive but my heart says it will be a life with not as much joy as one with the Big He in it. Every day this is my reality. Take a moment and think how you would be if every day you knew that the love of your life, the future you had planned together was not going to be there. Everyday. The spontaneity of our life is coming to an end, I can see it. It’s sad.
Another reality of this disease is watching the love of my life progress. At first it was not so noticeable. He would get tired a little easier. Not be able to walk the neighborhood like we once did. Now, in a year, this disease has really started to show us how devastating it can be. The Big He cannot really walk unassisted. Things like using the debit card is impossible because his fine motor skills are just about gone. Standing up for any length of time is taxing on him. Think of the things you do daily and don’t think twice about how your body is affected. Standing for a shower is hard. Standing at the kitchen counter just talking is a thing of the past. He needs to sit and conserve his energy at this point. He can no longer lay down without the need of his ventilator. His body is becoming weakened so much that what muscles that are remaining are working overtime and he becomes exhausted quite easily. It is not uncommon for him to need multiple naps a day. Sounds fun right. Wrong. In order to nap, he must hook up to his breathing machine and hope he can get into a comfortable spot. Also, you need to remember that he constantly has fasciculation’s all over his body. To better explain this, imagine having muscle twitch, in your arm, leg or eye. Now imagine it continues over and over. It does not just go away. Think that might drive you a bit crazy? All of these things are happening and more and does he complain. Nope. Doesn’t complain a bit. I do. I want to scream about how much I hate this disease. Lately, I have noticed his voice is not as strong. Can I just tell you how upsetting it is to know that sooner than later, hearing him say things like “I love you” or calling my name in his natural voice will be gone.
What about what it has done to our son. He knows what this disease is, what will happen. We’ve talked about it. We told him we would be open and honest about everything and we have. Even to the point of me letting him know how I feel at different times and its okay for him to be mad at the disease. Our son has gotten to do many wonderful things, but the reason is not wonderful. We are trying to let our boy experience all the things son’s and fathers do together. We are just speeding things up and trying to make those father/son memories as fast as possible. While we are proud of the young man he is becoming the reason again is sad. A boy of 14 should not really need to know the realties of this disease. A boy of 14 should not know the responsibilities he is having to take on. As parents, we only want to protect our children and The Big He and I cannot protect him from this reality.
I pray a cure or management comes soon so other’s, maybe even you or someone you love, does not have to know the cruel reality of this disease. Remember, there is ZERO cure, ZERO drugs you can take to make you better, ZERO treatments. The only thing that doctors can offer is to help with the quality of life to try and make the ALS patient comfortable. That is it and that is unacceptable to me.
With understanding this disease comes awareness. With awareness comes empathy and compassion. With empathy and compassion comes funds. With funds comes research and with research comes a cure.