My mother

To sit here and try to explain what these past few years have been like is not the easiest thing to write…
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I guess I can say with assurance that nothing in this world could have ever prepared me for the day I received the news of my mother’s diagnosis in 2010. As I listened to my mother utter the words “The doctor told me I have ALS and said I have 2 years to live”, I felt as though the ground beneath my feet had vanished and I was falling in a dark abyss of confusing and fear.
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Life as I knew it had just changed…
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Shortly after our conversation ended, I remember being struck with a wave of panic, which came from the fact that I didn’t know anything about ALS and what the diagnosis meant. I knew it wasn’t good though…I mean if the doctor gives you a limit to your life, then yeah, it’s most certainly something serious. But to be honest, prior to my mother’s diagnosis, I knew very little about the disease. I knew it was commonly called Lou Gehrig’s disease, named after a famous baseball player who lost his life to the battle, but other than that, I was completely clueless.
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The first initial blow of what was happening came during the following hours, when I began to research the disease online. I was devastated by what I read…losing the ability to move…diaphragm and chest wall failure…losing the ability to breathe without ventilator support…death within 3-5 years.
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I’ve come to realize that ALS is a disease that affects everyone close as well, and in all sorts of different ways. I find it extremely difficult to put into words what it is I’m feeling, mostly because half the time I don’t even understand the whirlwind of emotions myself. All I know is that they often ebb and flow and come in waves of various intensity.
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Being so far away from home, at opposite ends of the country to be more specific, was really difficult at times. Mostly, I wished I could have gone home more often, to be there to help out and to spend as much time with her as possible. At times I felt so completely helpless being so far away. To be completely honest, I feared that one day I’d regret not having been physically by her side through it all. It’s a guilt that haunts me every day.
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While some days I thought it was hard to be away from home, other times I considered it somewhat of a blessing. I say this simply because I don’t know if I would have had the strength to face what was happening to her on a daily basis. Just hearing about what she went through on the phone broke my heart to pieces.
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The thoughts of slowly losing my mother clouded my mind every single day, which was both extremely overwhelming and incredibly sad. In a strange way, it’s almost like I mourned her since her diagnosis, although, perhaps it’s more like I mourned the quality of life that was slipping through her fingers. When she could no longer walk without a walker, I grieved her initial loss of independence. When she became confined to a wheelchair, I grieve her loss of freedom of movement. Losing her ability to speak…well that was a big loss for anyone who knew my mother, because those that knew her well knows she could tell a story like no other.  We used to joke around as a family before, saying that one of her stories would lead into another until you realized you had no idea where the beginning was. The animation and excitement she’d get from telling a story was contagious. And watch out… if ever she ever got the giggles partway through her story…then it would never finish.  I find it heart-wrenching that I won’t be able to hear her chatter on ever again. Each time my mother had lost an ability, it’s as though I was there along side of her the whole way…mourning her losses, and mine too because the life with my mother that I knew before will never be again.
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On the upside of things, I have learned a lot of valuable lessons these past few years. For one, I’ve learned that you can never say “I love you” to someone too much. Knowing that our time together was limited, we made it count each and every time we spoke. But it’s not to say that my heart didn’t breaks every time I’d hear her struggle to say how much she loved me. And even though it was nearly impossible to hold back the tears that threaten to overflow, I did, because I knew the importance of enjoying that very moment we shared. I learned to appreciate and listen to every word spoken, no matter how unclear they were. So, although the cards dealt to my mom came with tremendous challenges and sadness, the knowledge that our time together wasn’t everlasting, we took the time to truly show and tell each other how much we cared and supported each other.
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Another thing that I’ve realized in the last few years is just how incredible our support network is. Not enough can be said for all the help and support my family and I have received. It most certainly wasn’t an easy road, but the people that surrounded us were a tremendous help in so many ways. No words could ever express how thankful and fortunate we were to have so many wonderful family members and friends there with us along the way. The ALS Association and the New Brunswick Extra-Mural Program had so generously given the much needed support, encouragement, services and assistance to my mom and our family. I couldn’t have imagined my mom and family going through any of this without any them.
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My mother was truly a brave and courageous woman. Time and time again, she had demonstrated how she refused to let the illness be a barrier to enjoying life and having fun. It’s not to say that she didn’t have her bad days, which were completely justifiable, but how she picked herself up from them was truly remarkable. She gave the emotions she felt the attention they deserved, but didn’t let herself be brought down by them. Her choice to continue to live her life with a positive attitude and make every minute count is but one example why I believe my mother to be the most beautiful person I’ve ever known. Although this disease may have taken my mother away, it hasn’t taken away who she was. She was a strong woman determined to live life to the fullest of her capabilities, and no words will ever convey how incredibly proud I am of her and how much I love her.
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Rachel
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In the spring of 2012, my mother’s story was featured in the “New Brunswick Ability Now” newsletter. Ability NB is an organization that focuses on helping people with mobility disabilities or spinal cord injuries, by providing services to empower the person’s independence by focusing on their abilities. To read the newsletter, Click here.
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Ability NB also published pamphlets for public education which featured my mother. To view the pamphlet, click here.
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I strongly believe that the strength is in raising awareness and working together for a world without ALS.
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