A Battle Everyday

Staffer’s Mom Suffers from Several Chronic Illnesses


Photo By Caroline Phillips

My mom and I enjoy a nice drive around town on Mother’s Day.

October 28, 2015 I had a problem earlier in the day, and went to speak with my mom who was at her vanity singing to herself. She seemed fine at the time. Usually when she’s singing it means she is happy. So, I go and sit on the couch and get maybe five minutes into an episode of Spongebob before my dad marches in from their bedroom, “Get up. We’re going to the hospital.”

Now beforehand, my mom had been diagnosed with Complex Regional Pain Syndrome (CRPS) which is a chronic syndrome in which the blood vessels dilate or leak fluid into the tissue. It is believed to be caused by damage to the peripheral and central nervous system. For example, my mother may simply pick up a pencil and the blood vessels will expand pressing against the surrounding tissue. Well, because the vessels are swollen and pushing up against tissue, they are also pushing up against nerves. Therefore, from the neck down, my mother is in this constant state of pain. Her arms and legs swell and turn beet red if she does anything that causes her vessels to dilate, such as simple tasks as moving around and lifting objects.

Usually when she is having a flare up, she tells me what tasks she wants done. It is usually something as simple as watering the plants or sweeping the kitchen. I try to help as often as I can because watching her in pain causes my heart to break. If I could do anything to take her pain away, I would.

However, even before that, my mother was diagnosed with, Behcet’s. Behcet’s is a very rare genetic autoimmune disease that causes the immune system to attack its healthy cells, or so scientists believe because the direct cause is unknown. Because of this, I have to be extremely careful with germs. I always get vaccinated, wash my hands, use hand sanitizer when it’s offered, and essentially act like a germaphobe because a simple cold to me could potentially rack my mother’s body.

On the day my mom was singing to herself,  I had just been in her room to get a band aid for my hip, and she handed me one. I left, not thinking anything was wrong.  Then, after hearing my dad say we needed to take Mom to the hospital, I immediately ran into my parents’ bedroom. There she was. The left side of her face was drooping a little bit, her speech was slurred. We made her hold her arms out, but she couldn’t raise her left one. FAST. Face. Arms. Speech. Time. Those are the things you’re supposed to check if someone is having a stroke. When my dad told me Mom was having a stroke, everything stopped because these plot twists only happen in movies.

Quickly an ambulance came and soon she was placed in the vehicle, with our dog, Chewy, attempting to hop in. I’ve only seen my dad cry three times. This was one of them. Consequently, the flood gates opened, and I cried too.

My mom battles with these physical illnesses everyday. They said the cause of her stroke was that her blood vessels swelled in her brain and finally burst, but when they scanned they couldn’t determine a for sure cause. Maybe it was her environment? Was it me?

Ever since though, she takes 20 or more pills a day, and that causes damage on her kidneys as well. Because of the Behcet’s, this also exposes her immune system. She has to be very cautious who she’s around and if they recently have been sick because the medicine is like that of chemotherapy drug. Strokes are also known to cause paralyzation. Sometimes when she eats she will choke up because the left side of her throat is paralyzed. So whenever we go out to eat we constantly remind her to chew and take smaller bites. It always scares me when she starts coughing. I constantly worry that one day she’s going to be mindlessly munching on some oreos, and no one will be there to help her.

My life is a little different than some. Most kids don’t have to be extra cautious with germs. Most don’t worry about their mothers falling in the house. And, most of all, they don’t have the fear of their mothers dying. A simple cold can rack my mother’s body because her own immune system is compromised. Also, she often uses a scooter in busy public places (and she often sets it on the highest speed and forces me to jog) and zooms through the crowd. Sometimes, we can’t go into certain places because they are not handicap friendly, but I wouldn’t trade her for the world. She’s a strong independent woman who won’t let any disease hold her back– I am stronger because of her.