There are significant moments when I am reminded why the foundation that Matthew Wild and I began shortly after his diagnosis, means so much to me.
Why we fight to not only build awareness around a devastating disease, but to help families navigate the ups and downs of the financial and emotional toll this disease can have on everyone affected by it.
Yesterday, towards the end of a 3-day immersion class I was in on campus, we stopped for a quick break. I glanced down at my phone, of course clicking on Facebook to see posts and pictures. It was then that I read a post.
I know I have written often enough of how hard it is to see loved ones posting that their PAL has passed, or is close to the end. I read about their struggles, how tired and helpless they feel as they care for their loved one.
But this post..this one was different. I was reminded, once again, that there are those who battle ALS with no family or friends to help alleviate their daily struggles. Or, they lack resources and tools to help them as they deteriorate. Their battle is much greater than I could ever fathom as they also battle loneliness, and hardships…and they do it alone.
I cannot imagine having to make this decision, and it only strengthened my resolve to work harder. No one should have to go through this alone… Every single person deserves love,dignity and independence.
This is the decision that one man came to yesterday. While I have only known him through Facebook, never having met him…up until this point, his posts were always full of hope and strength and determination to take what life had thrown at him, and to face it with courage and grit….
I have reached a decision that will disappoint many and I am sorry. The quality of my life has deteriorated to a point that no matter how hard I try I cannot find thankfulness in this life. Living independently with ALS is the only way for me. Combine independence with a budget then the trouble begins. The quality of life now as a result from cancer reconstruction surgery and the constant struggle to find decent help I have decided to go off life support.
The thought of thirty more years of struggle like the last three decades is a thought beyond comprehension. I am beyond exhausted and have been for years. You know doing the same thing repeatedly and expecting a different outcome is insanity. I’ve proved I’m nuts, but it was the best I could do with the tools I had.
I wondered if my strength would ever give out. It has and I’m surprised it lasted so long. I am happy to say after all of this my heart is still full of love. I love everyone I’m just too tired to do this anymore. I gave it my all. I hope I helped more people than I have hurt.
I want to thank all the wonderful family and friends that have been there for me through the years. I wouldn’t dare try to name everyone it would take years. Thank you so much from the depths of my heart. You brought light into this living hell.
I am in the process of making arrangements to do this. I don’t like drama I will just get it done. I’ll see y’all on the other side. I love you!