Last time, in part 1 of Signs of Life, I told you about the time I was in first grade and fell and hit my face while playing outside in the snow with our dog. The accident landed me in the hospital repeatedly for transfusions of cryoprecipitate; I was out of school for more than a month with a swollen, horrifically bruised face. I was an unrecognizable caricature of myself. A woman had just confronted my mom about my bruised face.
The Confrontation
Before my mother could explain, the woman blurted out, “You should be ashamed of yourself! How could you let this happen to a poor, defenseless child?” Now, like I said, I was only about 6 at the time, but I knew to hold onto my Buster Browns, because this woman was about to get a big dose of Edith! My mom didn’t take criticism too well, especially when it came from ignorance.
My mom replied, “Lady, you don’t know what the hell you’re talking about!”
The woman shouted back, “Well, I know what I see!”
My mom, in a stern but calm tone, said, “What you see only tells half the story. Perhaps you should ask more questions before jumping to conclusions or making assumptions! What kind of person do you take me for that I could do this to my child, then take him out in public and parade him around for the whole world to see. Are you that damn dumb?”
The woman, who still had a look of shock and disgust on her face, stood there waiting for an explanation. My mom proceeded to tell her about my hemophilia, the accident and the hospital. The woman apologized profusely, to which my mother replied, “I accept your apology, but in the future, don’t assume. It just makes an ass out of you and me!” I’m glad I inherited some of my mother’s sharp wit!
Adulthood
As an adult hemophiliac, I still get the stares if I’m bruised up from bleeds. Once in a while, someone will ask me what happened, especially if it’s a very large or colorful bruise. Most of the time, I don’t even think about the bruises.
Sometimes, though, I’m self-conscious about them. I’m somewhat clumsy at times (not good with hemophilia) and often bump my legs or arms. It seems I’m always covered in bruises. I usually don’t wear shorts in public, even in the summer, if my legs have bruises all over them. I’m just not comfortable. Also, I have moderate-severe psoriasis, which also plays a role in outward signs of life for me, perhaps more so than hemophilia and bruises do.
When I was working as a nurse, I wore scrubs to work. Because I was on my feet the entire time I was on duty, I’d wear just a T-shirt under my scrubs to stay cooler. This left my arms exposed. The last year before I was forced to leave my job due to bleeds, I had close to 40 bleeds in a 12-month period. It seemed like I was infusing all the time! You can imagine how my arms looked with all the needle marks.
I don’t know about you, but if I were a patient in the hospital and my nurse’s arms were covered in needle marks, I’m not sure my confidence would be very high. I had many patients question me, and I’d have to sit down and tell them all about my hemophilia. I don’t ever mind educating someone, but it became exhausting having to do that almost every shift with almost every patient for nearly five years. Outside of work, I’d wear long sleeves to cover up my arms so people wouldn’t stare.
When my hematologist and I decided to start me on prophylactic infusions, my doctor asked if I’d like to consider having a port-a-cath placed to make it easier for me to infuse. As a licensed nurse who worked mostly with oncology patients with ports, I was very familiar with them. It was a natural choice for me to go with it, and it’s been a blessing.
Lesson to Be Learned
Having lived with the stares, judgments and assumptions based on the outward signs of my life, I’ve learned to never assume or judge others solely on what I see. I don’t know what’s going on in their lives. Everyone has a story.
I’ll leave you with this thought: How many times have you perceived a situation incorrectly because you were making a judgment with only partial information?