One thing that I need to hear that I did not need to be reminded of prior to diagnosis is that I am not alone.
Brain disease is isolating and entirely scary! It brutalizes victims into submission by dismantling one capability at a time, and thus far, no one and nothing can stop it. Since quitting is not an option, we must overcompensate just to maintain a baseline.
Each hour of the day and night I am getting beat down. If you catch me during the hours when my body happens to be fluid you will find the personification of exuberance! I take full advantage of any cherished but temporary relief.
It’s exhausting going against the inevitable yet unpredictable tides that come not in cycles, but whenever they feel like it. All I can do is try to stay above the rising waterline.
Every single day I’m learning to cope without adequate rest. The only ones who know what it’s like on the inside are those who are enduring similar agonies. We run into one another in these unfortunate circumstances, offering a fist bump while sharing our survival techniques.
I may appear more thin, drawn, HUNTED, because loss is my constant companion. I’m not unhappy or bitter about my situation, but I do feel emotionally drained.