I do my best to keep my emotions in check. I find it best to be as objective and logical as possible. It is freaking hard sometimes. There are just some things that I struggle with. Most of them are things out of my control. Come to think of it, I am sure that only magnifies them.
Y’all, health care in our country sucks! I don’t mean the professionals, doctors and disciplines. I mean the system. The industrialized monstrosity that chews patients up and spits them out. I will not delve into the political maelstrom that often ensues. I will just address my experiences.
I have the privilege of receiving care through two sources. The Veterans Administration and private sector. I specifically use the term “privilege” because therein lies one of my most acute self conflicts. I receive a very high level of care with the two combined. I am grateful for this EVERY SINGLE DAY. However, I am reminded often that this is not the case for a majority of people. ALS takes a toll, not only physically and emotionally, but financially. Even with the best health insurance, the peripheral needs will drain you.
It breaks my heart to see, hear and read about the struggles others are facing daily. The fight that they have to put up to get what should be basic care. The insurance denials that have to be appealed. Should one have to choose death because they simply cannot afford to live? I am not exaggerating. The care required to live with late stage ALS is intensive. How can anyone expect to give this disease hell when they have to prove that they “need ” equipment to live?
I attended an ALS connection meeting some time back. It was the first one for me. As we sat there sharing stories, I could just feel chills down my spine. Looking at the families, I could see such pain, fear, confusion. They spoke of not knowing how they would make ends meet. How they would they be able to care for a loved one who has lost independence? When my turn came, my emotions overcame me. I could barely get words out. Why do I deserve the privilege granted to me? Every one of them is just as deserving. I broke into tears trying to say how badly I felt for them. Of course, everyone did their best to console me. “Don’t feel that way. You served. You earned it. ” But it doesn’t feel good. To this day. I have this sense of embarrassment, almost. I know I shouldn’t, but I can’t shake it.
It is a constant tug of war in my head and in my heart. It should not be this way. We should all at least have the same opportunity to put up a fight with ALS, if we choose.