Today I had a difficult discussion about suffering. About how suffering is a matter of perception. About how we all suffer. Life can throw us some serious curve balls. ALL OF US. I suppose a few escape, although when you talk to someone long enough you will find out they too have suffered.
We really go from one life event to the next. We suffer, life gets better or changes. Then we have some weeks of smooth sailing if we are lucky and then the next season of suffering comes. It's funny how we humans are, how we compare suffering. I'd like to believe I don't do that but I'd be lying to myself. No sleep is a huge source of suffering in my life. We will have been awake for more nights than either of us can remember and still doing all the things required of us. Me caring for a severely autistic adult, (my son, Britton) and my husband going to work taking care of people who suffer in other ways.
I feel sorry for him when he comes home dark purple circles, looking like someone strapped a giant sand bag on his back. He'll drag in pulling that sand bag with him and drop into a chair. I'll ask, "rough day?" He'll mumble, "oh it was alright." It'll take me a few minutes to get him to unpack those emotions. Eventually, I get the story of the woman who cried because her husband was unfaithful. The man who is losing everything to bankruptcy, again. Then the one that really gets him, the family that is taking care of grandma with Alzheimer's and trying to raise a child with autism. He just sits and stares for about 15 minutes. Exhausted by the suffering of mankind and buried underneath his own suffering and fatigue.
But that won't last because Britton will hear him and rush into the kitchen cause Dad is home! He loves Dad. Dad's his favorite. Dad will use superhero strength and prop himself up and tell Britton he has to change clothes. They will head off towards the bedroom Dad dragging the sand bag and Britton skipping behind. Won't matter that he was up all night. Won't matter that a seizure kept us sitting on his bed till 3 or 4am. Us both hovering, praying Britton can get enough air in his lungs to ease the blue of his lips. Face the color of dark clouds, and eyes rolled back.
That stress of the countless times has wrapped itself around our throats, choking the life out of us like an African anaconda...we barely breathe. None of that matters to Britton. He's severely autistic and so it does not seem that he considers the difficulties of life outside his own world. A few minutes will race by and they will come out of the bedroom, dad changed into shorts and t-shirt, and Britton holding Dad's shoes. He'll slowly take the shoes and start putting them on. His second job has already begun and he's not even blinked more than a time or two. Britton will hop up and down and squeal his dolphin squeal in anticipation of time with Dad. It may seem like only small suffering. Just fatigue, the sacrifice of anything my husband or I would've wanted...but again small. Our flesh cries for rest, for time with each other but we have long ago learned to silence that voice.
Then there are the days when the seizures last through the night. We end up in the emergency room to stop them. Britton is pumped up with drugs that will stop the seizure now but cause more later. He gasps and moans. We hover closer, ever protecting him from a medical world that we no longer trust. A world that we believe created this suffering. Most of the medical staff are good and kind people, who mean us no harm. As a matter of fact, they hover over Britton because they believe his parents might harm him with their opinions of what caused his illnesses. Some of them try to sneak in vaccines, or drugs they believe will be helpful. We stand guard like soldiers on the front lines.
On rare occasions, we even attempt some education of vaccine facts, statistics. But that world is heavily fortified against, "our kind." We are the brain washed antivaxxers. Blaming an industry that "only cares for our children," whom we apparently are too stupid to protect on our own.
Britton has not been that happy young man I described in a long while. Having had seizures dislocate his shoulder 30+ times and two surgeries over the past year, he has withdrawn back into the "safety" of autism. In that world, he knows how to act. In that world, he knows what's expected of him. Before, when he began to peek out into the "normal world." It was all a mystery, all a world of hope and possibilities. Once when he first began to communicate with us through typing he typed, "I eat hope like candy. I eat up the possibilities." Now I'm afraid it seems like he eats up fear and suspicion. He doesn't seem to trust ME anymore. He will take no risks with me. He rarely types. I know the arm must heal, but he will type some with dad, with others. I am the main caregiver. I am the one who allowed the darkness to descend and I did not save him from it. It feels like I'm the enemy. My heart just cracks and shatters as I say that. It's like a mirror of his pain and his dismissal which is constant now cracks my heart into shards that cut through the rest of me.
I was discussing his suffering this morning. I was saying that our suffering matters too. That although I know that there are those who suffer far more, that all suffering matters to God. We should all care, we should all attempt to stop suffering or at least help if we can. Everyone believes that. We send money to help abandoned animals. We support children's hospitals. Hand five dollars to the homeless. No one likes to think of or even look at suffering. Have you ever wondered why you don't want to go to that funeral? Why you avoid visiting the friend in the hospital? Could it be the suffering you're avoiding? No one wants to deal with it. I keep asking myself why. What is it that makes us avoid those who are in pain? Cause come on, we will avoid it at all costs. We even occasionally get angry at those who do suffer. We panic when they need us, we even accuse those who suffer of trying to "drag us down." Cause whatever it takes to stay away from it, money, unanswered phone calls...that's what we're going to do. I've come to the conclusion that watching others suffer, puts out mortality right in our face. That it screams at us, "THIS COULD BE YOU." But since no amount of avoidance or pretense will keep us safe from suffering, we rail against it. Most of us don't manage it well, AND the big thing is, we rather not do it in silence. It's almost as if suffering makes us also feel shame? But we know...all humans suffer, so suffering appears to be part of the plan.
Don't get me wrong, it wasn't the original plan. It was definitely plan B. Originally we were going to have only happiness, contentment, and full stomachs. Originally we were going to live in a beautiful garden and love one another unconditionally and commune with the King of the World. But we failed miserably, after discussing the plan with a slick talking, fork-tongued garden politician. He talked us out of believing it was a good plan. So here we are, living out plan B the only option left to us managing an "unfair" amount of suffering. We'd run from it if we could, while we stare at the backs of those who "love us." Running from us like their hair was on fire. That's a sobering reality.
Please understand this is not me blaming, not me calling people out. I am guilty too. I have ran when I should've stayed. I have ran when what was needed was hand holding and a hug of reassurance. Calm words, a listening ear and just saying that I cared. One of the hardest things is to suffer in silence. As if suffering isn't enough, our actions say, "YOU, go suffer over there, so we don't have to look at you while it happens. My life is in a pleasant season right now, so I'd rather not be reminded that other people are hurting." Yikks definitely not plan A.
This past year I have lost contact with so many people in my life. I believe that many and frustrated that my tragedy just won't end. Boy, I sure understand that. I'm beyond tired of it myself. As if I have control over how long it will last. I mean, I always thought all of Britton's illnesses would get better. I thought when he became an adult that we would've figured out. Yep, that's what I thought years ago...but there really is no prognosis for autism...no one has gone this way before.
Autism by its very nature is isolating. There is so little understanding of it, and parents are so protective. People outside the autism world can't possibly understand it, no matter how hard they try. Thank goodness so many do try. God bless you for trying. God bless each of us when we try to understand each other's pain.
At Christmas, I was walking through my neighborhood and looking at an entire block of houses that are still vacant. Hurricane Harvey ravaged our subdivision with water, mud, and vengeance I had never experienced. If they aren't vacant the people are living without interior walls, floors, ceilings, appliances. Blocks and blocks of this in my subdivision. Then come to the next block and there were Christmas lights on houses. I just couldn't do it. I couldn't put up Christmas lights this year. Not that I had time, but it felt like a mockery to the families that didn't have their houses back. I'm not saying it is, I'm saying it's how I felt. Instead, we made Christmas goodies and I and my granddaughter knocked on doors and handed them out. I just wanted to acknowledge they still suffered. No, it's not Lybia and human trafficking, which should definitely be acknowledged. But their suffering still matters. Your suffering matters. Whatever is happening in your world. If your spouse is not well. If your marriage is not well. If your physical body is failing you. Perhaps Hurricane Harvey has brought you to bankruptcy. Your suffering matters. I just want to acknowledge that. I want to say that humans suffer. That we should stop and listen to each other. If not with our ears then with our hearts. That we all must realize that we are humans, we are mortal and fallible. That we should help each other when we can. We need to show we care. Let's not let the business of life keep us from reaching out to each other. Because humanity is our business. We must come to understand that the degree of suffering is relative to the individual experiencing it. Deciding the suffering isn't enough to warrant our concern is not part of plan A or B. I pray that suffering has taught me that at least. I know that no matter what someone is suffering I want to console them. If God places them in my path, I want to notice and be His hand to that person every time I can be. I want to listen when that person needs to talk. I want to hug them when their soul bleeds. I want to be Jesus to them because it's the least I can do. Suffering is Plan B. Suffering appears as a cruel taskmaster. Taking away our hopes, lashing our flesh into submission.
I love Helen Keller's quote, "Although the world is full of suffering. It is also full of overcoming it." Yes, and she would know.
Today I had a difficult discussion about suffering. About how suffering is a matter of perception. About how we all suffer. Life can throw us some serious curve balls. ALL OF US. I suppose a few escape, although when you talk to someone long enough you will find out they too have suffered.
