Lifting a gallon of milk off the grocery store’s refrigerator shelf, I turned to put it in my cart when I came face-to-face with a nurse that I had worked with a few days before. Rosie had a toddler with her and a baby sitting in her shopping cart. Delighted to see her, and for a chance to introduce her to my daughter, Tammie, I glanced at my grade school daughter and said, “Tammie, this is the nurse I told you about. Rosie, this is my daughter, Tammie.”

They shook hands. We had a lovely visit, but soon went our separate ways as Rosie’s baby began to fuss. Rosie and Tammie were both born with TAR syndrome, causing them both to have elbow-length arms. Tammie’s hands sharply angled in, while Rosie’s did not.

On our way home from the grocery store, Tammie had many questions. The first, “Why are her hands so different than mine?” I explained that some people with TAR syndrome have surgery on their hands to ‘centralize’ them, which I suspect gives them a farther reach.

I began to tell Tammie that Rosie had seven siblings and that she had one sister who also had TAR. She and her sister never needed blood transfusions, nor surgeries to correct lower extremity deformities. My daughter wondered, “How can that be for someone with TAR?”

My explanation that evening became an often-repeated maxim, “All illnesses, syndromes and tendencies are experienced by people on a one to ten scale.” I tried to explain that what one person experiences with an illness or disability isn’t what everyone experiences.

In my mind, Rosie and her sister had TAR on the scale of maybe three or four. Tammie with all her blood transfusions and leg surgeries, had TAR on the scale of about six or seven. We also knew a boy with TAR who had hands coming out of his shoulders and was never able to walk independently. For those extra challenges I felt his experience of TAR had to be at least a nine on the scale of ten.

Like all other disorders, people who experience obsessive-compulsive disorder can experience symptoms that range from merely annoying to not being able to function. People might chuckle when they take computer tests to measure if they have any characteristic symptoms of OCD. The computer program shows pictures on a wall that are not evenly lined up and ask if looking at that makes you develop a nervous twitch. I look at that and think, “There is nothing wrong with wanting pictures to be hung properly.” The disorderly line of pictures would bother me somewhat. That is barely a level one symptom. At level ten, hoarding, panic attacks or the inability to do anything other than mindless repetitive actions can be life ending.

I’ve recently had my right hip replaced. My going home instructions were to refrain from bending at the waist, and to lay down and rest every-so-often which helps in recovery. The instructions sound easy, but I quickly chaffed at being limited in what I could or should do.  

One or two things in my household immediately started to drive me crazy. Every spring when the weather warms up, all the Asian lady beetles that hid in my house last fall come out to dance the light fantastic on my toothbrush, on all the food in the kitchen, in my teacups, and on every windowsill. After performing their final dance, they flop down and die. Everywhere I looked, I saw dead, stinky bugs, and I didn’t feel up to cleaning them away.

Then daylight saving began the first weekend after my surgery. In addition to all the dead bugs, none of my clocks showed the right time and I wasn’t in any condition to get up on a stepstool to adjust them.

To make things worse, I hadn’t been putting things away after I used them, so the house was messy with sweaters, Kleenex, food dishes, assistive devices and empty glasses all over the place. My cluttered surroundings made me feel ashamed and anxious.

My cats comfort me. I loved how they sat on my lap and purred.  Unfortunately, they shed a lot of fur. My rugs are covered with a fine coating of cat fur. I felt like I was living in a slum. I wanted to clean and vacuum my house, but I wasn’t up to doing that yet. Meanwhile, on my OCD scale of one to ten, the number is rising. It is much higher than just one or two!