It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. ~Theodore Roosevelt
My dear readers, I have been ignoring you, and it’s not for the reasons you may think. While listening to Brene Brown’s newest, Rising Strong, on CD between errands for the past two weeks, it hit me. She talks about just how much we love a story of triumph. In life, just as in stories, we look for the redemptive victory. We can’t wait to hear the ending because the story simply cannot end in the miserable middle. As an avid reader, I can attest to the fact that the middle book in any trilogy is always the worst, but it is also absolutely necessary.
As she explains (and I concur), the middle happens within the arena when we have reached the absolute bottom. It’s the part in the movie you might miss if you blink as the hero begins his ascent nearly immediately. But that isn’t how it really happens, is it? In reality, we are in the arena for much longer. We are tired and muddied and bloodied and broken. We are ready to give up. And eventually, after a long pause in the mud, we find a way to keep going.
And so, readers, I have failed you. I have failed you because I thought I could deliver a blog that followed such a hero’s journey. I thought I was writing book three. I thought that the worst was already behind us. I thought that I had already gotten up and begun to sift through the ashes. And then it hit me. I was only in the middle of book two.
I wish with every fiber in my being that I could tell you Little Man was at 100%. But today sucked. And while he has had many good days, and we have made so much progress, he has had many setbacks. My husband is currently out of town and I woke up this morning to a screaming child and a soaking wet bed. Again. I got him up, helped him shower (he has difficulty with self-care) and worked on breakfast. He refused the first plate because I made the mistake of putting an unfamiliar item on it. This is not simply an “I don’t want that” but an OCD, massive anxiety-producing issue. I quickly made it right by removing said item and replacing it and then began to prepare his vitamin drink. It’s a careful balance as I must put enough drops of each item to make a difference, but add too much and he will refuse to drink it altogether. I then gather all his chewable vitamins, prepare food for lunch, order more of said vitamins from four different websites, and try to sneak in a shower. After a few manic episodes through which I guide him, I mentioned the one task for the day, which involved leaving the house. This threw him into a massive, anxiety-induced panic where he began acting like a three year old and was completely non-verbal. Leaving the house is nearly always an issue.
Later, I finally convinced him that leaving the house was safe, that it might be fun and that he was getting paid for helping, he acquiesced and hopped in the car. We had been charged with watering our friends’ garden. Simple enough, right? We walked in, got out the hose, and began to water. I asked him if he would like me to assist with the window boxes that were beyond his reach. That simple question sent him spiraling once again. He had been on edge all day, but this came as a bit of a surprise. He trained the hose on me and began screaming like a banshee while thoroughly soaking me head to toe. By the time I reached the hose to turn it off, he began searching for dog toys to pitch at my head. With tennis balls being chucked in my direction and the very real concern that he might run out the gate and disappear at any moment, I did my best to complete our task. He continued the ear-piercing screams and I figured we had better make a swift exit before someone decided to get the police involved.
In the car, I was called every name in the book (well, every name in an 8 year old’s vocabulary). It took nearly 15 minutes to get out of the car and once inside, he grabbed some of my jewelry and threw it in the toilet, hit the dog with a wrapping paper roll repeatedly, and again reminded me I was the worst mother in the world. He finally was able to reach my husband who talked him down from the ledge and then, I started dinner. Soon, I will begin our OCD-driven hours long bedtime routine and I will likely have to complete this blog in the morning.
I am often exhausted. I deal with PTSD from being repeatedly sucker-punched from behind. Many days, I don’t leave the house. In fact, lots of days, I don’t even shower until noon, if at all. My mail lady hates me because I order everything on Amazon. Unless I get a free hour. Then, I wander the aisles of the supermarket, or Target, or I sit in the parking lot and read or listen to music and attempt to recenter. On rare occasions, I head to yoga and once a week, for a glorious 30 minutes, I go to a music lesson to play guitar and sing and try to keep my sanity. I try to meet up with friends about once a month, but that doesn’t always work out as his separation anxiety can be intense and sometimes, I just don’t have the energy.
We are in the arena. And though I am confident that this story-line will eventually meander it’s way to book three, we just aren’t there yet.
But there is something about being in this particular arena that has made me acutely aware of something and I cannot bear the silence any longer. There is something else we (the collective) don’t like to talk about. Little Man does have several physical symptoms such as the lack of bladder control I mentioned above, dark circles under his eyes, low grade fevers and lethargy, and I will spare you the rest of the laundry list, but the great majority of his symptomatology falls under the dreaded, conversation-killing label of “psychiatric symptoms.”
At an event a few weeks ago, I found myself among many casual acquaintances who are also friends on social media. As such, they know why they haven’t seen me around. They came up to me one by one and asked how things were going. I am not sure what they expected, but I gave them an honest answer. Things were better, but not great. I am not sure what I expected in return, but all I got was blank stares, silent nods, strange facial grimaces, and then a quick exit to the conversation. I kept wondering why they even asked.
I get that a child who rages and screams and throws shit at their parents doesn’t yield the same type of compassion as the child who loses all their hair to chemotherapy. No, it’s not endearing. But why do we have to make this conversation so uncomfortable? Why are people less empathetic? Why did no one offer to bring us a meal or start us a gofundme to help fund his care or even simply ASK what they could do to help?
Why do we feel the need to pick and choose what is worthy of our empathy? To sift through and prioritize what we should champion and what we should ignore? Is there a limit to empathy? Are we afraid we might run out? What is it? Why, when I talk about my son’s illness do people look at me with pity and then suddenly stop the conversation?
My child is ill. He has an autoimmune-induced encephalitis which happens to cause psychiatric symptoms. But I don’t desire anyone’s pity. In fact, I loathe it. We are in the proverbial arena, and it has been a very lonely one at that. There are very few people who even attempt to understand what this hell is like. I suppose I cannot altogether blame them.
I do not know many of you personally. Most of you read this because you know, first-hand about what PANDAS can do to a family. But I would like to make a simple request of everyone who stumbles upon this for whatever reason. The next time you see that grandmother with dementia, or the homeless man muttering to himself, or the autistic child, PLEASE treat them like a human being. Be compassionate and loving even if they are not. Trust me, they need it more than you know. They just might be in that arena, looking for anything that will help then get back up and dust themselves off.
Hugs and healing,