This started as a letter I was going to send to Ben, a.k.a. Power Boy, after recently meeting him and his family at Mayo Clinic in Rochester, Minnesota. Ben was undergoing tests there to determine status of progression of his ALD. ALD refers to Adrenoleukodystrophy, a rare hereditary disorder that affects the brain, adrenal glands, and myelin sheath which insulates many nerves in the central and peripheral nervous systems.
To find out more about Ben, ALD, and how you can contribute to alleviate some of the out-of-pocket family travel and boarding expenses needed for increased Mayo appointments, please visit “Power Boy ALD Awareness on Facebook.
As another means to learn and show support, observe Rare Disease Day, Feb 2, 2012, with “L.O.V.E.: Let Our Voices Echo.” On this day, patients and families will share their stories to focus a spotlight on rare diseases as an important global public health concern. Among those included (these are just a few): Fetal Alcohol Syndrome (FAS); Muscular Dystrophy; Adenoleukodystrophy (ALD); Down Syndrome; and Cerebral Palsy.
I dedicate this article to Power Boy, my teammate and my friend.
Before I was old enough to go to school, I was also a regular visitor of Mayo Clinic. I was born with a kidney disorder that doctors wanted to learn more about. They wanted to help me feel better, but because my condition was rare they needed to do many tests and I spent a lot of time getting poked with needles and having little plastic cups glued to my skin. Most of the time the doctors and nurses explained what they were going to do in detail and in words I could understand, but sometimes they didn’t and I got scared. My mom and I lived alone and she had to work, so I spent a lot of time in the hospital alone, even overnight.
One night, when I was really tired and trying so hard to be strong and brave, I started crying and couldn’t seem to stop. I was alone in my room and over the door I saw a black spot and was positive it was moving. I was really afraid of spiders and there was a spider, right over my door! Nurses came in and tried to calm me down, but I was crying so hard they couldn’t understand what I was saying. I didn’t want them to leave me alone in that room with the door shut, unable to move with the I.V. tubes hooked up to my arm and a spider there that could come crawling down the wall while I was sleeping!
A very kind nurse came in and tried to make me feel better. She held my hand and hummed softly. It helped a bit and I was able to breathe easier. It didn’t last long though, because she left and the spider was still there. Another nurse came in and when the door shut she actually yelled at me and told me to quit acting like a baby and scaring the other children who were trying to sleep. I didn’t like her. I had taken medicine and was so sleepy, but fought the urge to close my eyes.
The nurse I remember most is the one who came in and didn’t say much. She smiled warmly and looked into my eyes. She watched me and saw where I was staring–above the door. I tried to point but I was so very tired, my arms felt like they were two huge bazookas hanging off my shoulders. Nurse followed my gaze up to the space above the door and pointed right to the spot that was the spider. I moaned a little to try to tell her to be careful, that there was a spider there. She got a funny look on her face and finally spoke. She said, “Honey, are you looking at that black spot up there?” I nodded. “Does it make you afraid?” I nodded. I whimpered, “Spider” in a tiny voice. The nurse got a chair and stood on it, pointed to the spot again and then (I couldn’t believe it) she put her finger right on the spider! “This isn’t a spider Honey, it’s a nail in the wall. See the other ones here, and here, and here?” She put her hand on all of the spots and I was so relieved I got tears in my eyes. I was finally able to stop crying, give in to the medication, and allow myself to sleep and get the rest I needed.
There are things in life that scare us or make us nervous. It’s best to talk to people we trust and let them know what those scary things are. Learning more about what is really happening can take the fear away. Having people support you can help keep you strong when you feel alone because you know that even if they are not standing in the room with you, they are thinking about you and wanting the best for you.
The nurse that held my hand and hummed for me made me feel comforted, and I’m grateful to her. But the nurse that touched my heart the most and the one I remember best, is the one who looked deeply at me and my problem and put my fears to rest. She was as compassionate as the first nurse, but she put her care into action and showed it to me.
Encouraging words can be priceless, but as “heroes” we also put caring words to caring action. We “show” people we value them. The combination of word and deed is important for all Real Life Superheroes.
I may be grown now, but I still think about the nurses and other kids at Mayo. They are forever in my heart. I hope you have people that have inspired you and helped you that remain in your heart. If you ever need someone to show you that “the spider” isn’t real I want you to know that I am one of the people you can call on.
I know that you, Power Boy, have inspired many, many others who do, and will, always keep YOU in their hearts, prayers, and good wishes. You are now in mine.
Thank you, Ben.
Health and happiness to you today and every day,