I’m so tired of being a strong person. People always say stay strong, well I’m tired. I’ve been incredibly strong for over two decades. The universe has thrown circumstances at me that would make many people break. Yes I’m strong, being strong is exhausting. I have found that each time I ask for strength, life gets harder. Being told to keep strong seems completely stupid when every turn you take seems to be digging you deeper into a dark place or deeper into poverty.
When I was at the ER on Monday night, the doctor thought I had meningitis. No, I insisted on a CT, I had a concussion with 3 prior concussions that I was unaware of. Stay strong; when that thought is programmed into your mind from a young age, say having multiple root canals done at the tender age of five with no anesthetic, you tend to get really strong adults. However there is a dark side to that, like a pain tolerance that is so high you have no clue you’re in labor because it just feels like a twinge, or you push yourself so hard for so long that you end up in a wheelchair because you basically broke your back.
“Stay strong, this too shall pass.” As cliché as that statement is the “it will pass” part is true, we all leave this plane of existence at some-point. What is so exhausting is watching people say that to kids and parents in the oncology unit, or in the NICU, trying to be helpful. Another irritating part of strength is when a parents with a “normal” kid, tries to give advice to a parent with a special needs kid. Strength in these situations, is usually not understood, and it is really irritating when people, try to be helpful without realizing their ignorance.
Unless you are in or have been in a similar situation the worst thing to say to a kid with cancer or a parent with a special needs child is, “You are my hero/idle/inspiration, you are so strong.” It might seem like a good thing to say, but trust me on this, we do not want to hear it. We want the current crisis over so we can get back to whatever our normal is. In most cases we did not choose or remember choosing to have this experience. In the exhausted state that we are in, we may say something very cold and jaded; you probably won’t get the reference either.
After nine months in the hospital with my son and living in the Ronald McDonald House, because we were effectively homeless, I said something I still regret saying. I was in the elevator going back up to the NICU and a mom, obviously tired and relatively new to the hospital system, stared up a conversation, she said her kid was in the Oncology unit. I had just been told that morning that one of the kids back at the Ronald McDonald House had just passed from bone cancer. I had been very close to the brilliant shining star of a child. Strength can be very damaging; it can cause you to shut down your compassion when you are strong too long without any respite. My response to the poor mother was, “It happens.” and I walked out of the elevator.
Now I’m not saying that strength and grit are not great skills, habits and character traits, what I’m saying is that if you teach someone to be strong, you have to teach them to be strong enough to know when to ask for help. You have to teach the strong person to rest and regenerate or they will self-destruct. When a person is strong and never asks for help it will physically hurt them, it emotionally scars them. When a strong person is forced to ask for help against their will it can be traumatic, especially if they value their independence. Strength can be inverted into a form of self-defeating pride, or at its worse the most self-destructive behavior you will ever see. With Great strength you must learn to be both humble and responsible, for your mind, body and spirit. You must learn to take care of yourself, there is such a thing as being too strong. If you fold a piece of metal too many times without properly tempering it the metal will become brittle and shatter; so too the strength of a human being. Find strength in humbly asking for help. Find strength in self-care. Don’t hold the world alone, ask for help.
In loving memory of Ryan, Aimee, Carrie, David, Adrian, Eilene, Jonathan, Nancy and their families.
In honor of all the parents who have special needs kids, all the adults with special needs and the families who love them.