** This blog post was originally published May 21, 2021**
I didn’t know I was self-advocating when I did it.
I just knew that I was right and they were wrong.
I was on a panel recently about becoming an influencer, and I remembered something that was probably my very first act of self-advocacy. This little act of defiance and protection took place when I was seven, so if there was one before that, I’m kinda glad I don’t remember.
If I was seven, it must be meningitis.
My family stayed with my grandparents every summer, and they came to visit at the winter holidays. When I had gotten sick, they made the 550-mile trip as fast as they could, so they could help with my brother and me. They were very present as I began to recover, but they had never been in charge of my care before. In the summer of 1984, my parents decided to leave me and my brother with them while they took a well-earned anniversary trip to sailing school in Annapolis. It was the first time since I had gotten sick that they had taken a break for more than a couple of hours. It was time --I was still on heavy medication, but I was mobile.
Make it stand out
Whatever it is, the way you tell your story online can make all the difference.
My parents, of course, left a detailed list of medications with doses and times. One of them was phenobarbital, which controlled the electrical activity in the brain that caused seizures, and which I hated since it made me cry at the drop of a hat. That was the era of my dad calling me Sarah Heartburn, so when the doctors cut the dosage and I regained a little control over my overly dramatic mood swings, I was thrilled. The problem was, my parents forgot to reflect the new dose on their instructions.
My grandparents, being good and concerned grandparents, were determined to make sure they (and I) followed the instructions to the letter. I was just as determined that I not take any more of the adult-strength barbiturates than I had to. I knew what the new dosage was, but I was only seven, so my grandparents, as much as they loved me, thought I didn’t know what I was talking about. The only other person in the house was my brother, who was three. No help there.
So, I took the only course open to me. I ran downstairs and locked myself in my basement bedroom. We had a giant argument through the door. There was much yelling and crying. It must have looked like a huge tantrum to them. I absolutely refused to come out until they called my parents. But it had been a good 12 hours since they left, and Annapolis was only one hour away, so they were already on the open ocean.
I still refused to unlock the door.
Finally, something happened. I’m not too clear on the details, but I think they had to do the 1980s equivalent of a satellite ship-to-shore call. It probably helped that my grandpa was a Navy vet and knew the relevant procedures. Eventually they came down and told me I had been right. (And being the wonderful people they were, they apologized.)
Now, I am not sure what would have happened if I had taken the larger dose, but there was a reason the doctors had cut the dosage and I was scared. So I dug in my heels.
Before now, I hadn’t thought about it in a self-advocacy light. It was just a funny bit of family history. And who self-advocates when they are seven? No one is that self-aware at that age. I wasn’t. But I did know that standing up for myself worked. Perhaps starting young, whether I knew it or not, laid the foundation for now.