I know this and no matter how much I begin to take comfort in the small things in life like softball tournaments and family dinners we have ways the world reminds us. Today was maybe a little more harsh.
And I wonder when either of us will not feel like trigeminal neuralgia is punching us in the gut. And we take turns reminding each other that we were not promised 100% and that he is living a fairly healthy normal life and we are incredibly blessed.
I assume one day I will see and understand why my family has to go through this. And you wonder what this is. It is so much. It is hard to put into words. It is everything and it is nothing.
It is deep talks in the car that were so deep and private that I cannot bear to tell them. It is rough days where he doesn’t feel great. It is looking at pictures of us both taken one year ago. It is life. It is heartbreak. It is love. The love that makes you furious you care, but the same love that will drive you to the ends of the earth.
But the hardest part of this disease is the reminder of its realities. In the last 24 hours two trigeminal sufferers killed themselves. They wanted the pain to stop. But more than anything they wanted someone to hear them. To recognize their pain.
People with chronic disorders are often ignored by people in their circles. They are treated as crazy. They are often treated as drug addicts. At some point people stop wanting to hear about it. Especially when they see that person trying to live a normal life. It is easy to think all is well because you saw them at the grocery buying milk. Or you see them out to dinner with their spouse.
Just I beg of you….see them. Hear them. Acknowledge their pain. They have to live life as normally as possible and the move through the pain. But not because it stopped or because they made it up the whole time. But because they want to live life. More importantly, they want those they love to live a normal life.
And please know our lives are good. We are grateful for these moments they have been gifted. I don’t take life for granted and I am not sure if I ever will again. But everyone else that suffers from chronic disorders isn’t as blessed. That is a reality. A harsh and brave reality.
I cannot dwell on my imperfect perfect life and I cannot tell you that TN isn’t something real that we cope, manage and deal with every day. But I can say that I hope by sharing a little bit of my perspective with you can change a little bit of your own perspective.
Listen and love because love will always win. It always does. This much I know.