I originally started this blog because my husband was diagnosed with ALS and I wanted a place to share with family and friends what was happening with him and us. I continued with it as an outlet for my healing and have had hopes of helping people somehow with sharing my experiences.
When it was all going down I didn’t feel very free to write all the gory details of the day to day stuff. I felt that I needed very much to preserve as much dignity as I could for Scott. As much as exposing the reality of this disease could bring awareness I didn’t want him to feel so exposed. So I shared what I could and We carried on.
In recent days the whole ALS Ice Bucket Challenge has been all over the media. I am thrilled that there has been so much attention being brought to an illness that when Scott was diagnosed We knew nothing about. They know so little about this disease and some 70 years after Lou Gehrig passed away from this disease, they still don’t know what causes it. It can affect anyone at any age. So the awareness hopefully will bring the much needed money to study it and hopefully get some answers and find a cure.
It has been difficult for me to have this all over my news feed everyday. I get drawn into watching the videos and some of them are of people who are living with the disease themselves or are caring for someone who is or who have lost loved ones. I know I could just block these things because they are too painful but I watch the videos anyways. It is heart breaking. I find that for the first time I am seeing what we went through. I mean, I know what we went through, I was there, I lived it and it was hellish to say the least. But I don’t think I really could see it until the past couple of days. I think I just carried on from one task to the next and one day after another and couldn’t really see the whole of what was happening. I’m getting a better picture of things now and I’m suddenly not sure how we got through all that. For us though it all happened very fast. We were just beginning to really get our heads around it and it was then over.
It has occurred to me in the past couple of days that it is time to tell our story. Rather than the after story. It is time to tell how things unfolded for us after Scott was diagnosed. I am hoping that this will bring a better understanding of what it is like for someone with this disease and for the family and friends who are affected by it. And I think I just need to get it out. I will be doing this in parts. This is all for now. Please feel free to pass this along to anyone who you feel might benefit from reading and please as always I welcome feedback. Much love to all of you <3.
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