6/10/2019
Some people become widows in the blink of an eye, a tragic accident or sudden death, and some become widows after what I can only imagine is a long grueling battle with an illness. My story was neither of those; although it seemed quick to most, it was a horrendous few weeks for us. My husband died of a sporadic brain disease. This disease is said to strike only 1 in one million people worldwide, and there is NO CURE.
The onset of his symptoms started in February 2016, and in March, we had our first trip to the emergency room. I remember it so clearly; I remember the fear, worry, and ER room we were in. It’s all so clear, like it happened yesterday. Your symptoms were an anomaly; no one, including myself, knew what to do next. I remember the first mention of this disease from one of the neurologists we saw. He said it was a slim, VERY slim possibility but highly unlikely, I went home and googled it, and it was from then on that I began to function for the next 2 months on adrenaline and fear.
The beginning of April began was his first actual stay in the hospital with what was a long, drawn-out week of tests and more tests, and treatments for any things possible, all with again no results and no answers. We had consulted with different doctors around the country in anticipation of flying him anywhere. We were told to go home and wait, my heart sank, and I began to fight with the doctors, but to no avail; I brought my husband home. I hired everyone and anyone I could think of to help, he was deteriorating and we were losing hope, but I kept going.
Toward the end of April, we took him back to the hospital. I remember helping him into the car with the most visceral pain I have ever felt, praying this wouldn’t be the last time you’d ever see our home again. On May 3rd at 7:40 in the evening, I received the email that the results came in that you indeed had this most abhorrent disease. I walked outside so the kids wouldn’t see; I fell to the ground on the sidewalk and cried. I then picked myself up and called your brothers. The next day you entered hospice.
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