A.L.S. always living scared

So, I have had so many requests to continue my blogging and I truly wanted to but felt too guilty for making myself and others laugh. It has been exactly 11 months since my last blog and I think I am ready now. Just after my Peacock Blog my one and only brother was diagnosed with ALS or Lou Gehrig's disease. ALS is short for Amyotrophic lateral sclerosis. The first time I heard these words we were at my aunt Lyndas funeral. My brother had all of these really weird symptoms like "fasiculations" which I had never heard of before. This is like little twitches of your nerves. But his were off the hizzy. They were all over his legs and arms and stomach. I remember him telling me that he had them and for me to look at them and I was so oblivious I was like man that is weird. Never thought anything else about it. He had also lost 40 or so lbs and I thought he looked hot! I had no idea that he and Michelle thought something was seriously wrong. So back to the funeral.


My aunt, Sister Lynda Ann Rink, my namesake, yes a nun, had brain cancer and had been doing really good but when it kicked in it was really quick. She died and has truly been missed by me and my whole family. My brother came in for the funeral and the night of the wake he looked so different. He was definitely walking differently and his spirit was on a sabbatical. We found out that night that he had an MRI the next day. We were all so scared but we were trying to focus on our aunt. I had the gathering at my house after the funeral and Jay and Michelle came after the MRI. Michelle told me that one thing they had mentioned was ALS. Holy shit mother of god, I had no idea that these three letters would mean that I would live with these three letters. For me they stand for Always Living Scared (ALS).


We did not get the diagnosis for another week. Jays kids were in town and I had the little ones and my sister had the big ones. Jay had an appointment that would change my whole families lives. I will never forget it. I took the little kids to see Toy Story 3 and my sister had the big kids at another movie. I texted my mom and I said any news???? She replied "yes, not good, the worst"................................I promptly left the theatre and went in the lobby and started crying, I called Rick, I called Nicey and I called my sister not knowing she was 20 feet away. She came out and we sobbed together and I will never walk in that theatre again without thinking about it. I will never watch toy story 3, EVER!



The rest of the week was a blurr. I keep talking to myself and asking REALLY GOD? I still cant believe it. I still don't believe it.



I am a runner and I think I have thrown myself into this hobby because it lets my mind run free and my legs feel endless. I think about my brother a gazillion times a day but especially when I run. I listen to music that reminds me of him and I think of how lucky I am to be able to run and run and run, something he will never be able to do again.



I find myself dwelling on not only the future but a lot about the present. I go over everything in my mind after I leave him, over and over and over and try to think about his changes and how he must be feeling. I think mostly about how he must be feeling and about the sadness that must be in his heart. I know my heart is really heavy these days. I put on a really big front that I am a tough girl but I feel so sad most of the time but have incredible highs as well. We have made so many memories this past year and have really tried to take in all that we can. I am not a sappy person but when I run I get really sappy and many times I will get very teary, but no one is there so I can go to town all by myself. My running and my tears, It makes me feel so much better.

So here i am one year later, since then he has gotten married to Michelle (our angel) If it wasn't for her I would cry a lot more. I think to myself thank you god for sending her.......I think to myself thank you god for letting me run.