I rarely went to see my sister while she was in the hospital. The doctors felt it would better if I didn’t expose myself to the plethora of germs. When I did go to see her, it coincided with my quarterly clinic check up at the University of Minnesota Cystic Fibrosis Center. This was the case in the fall of 1993 when my mother and I headed up to floor 5A where Angela was being treated. The walls were brightly colored with finger paintings and coloring book pictures, which unsuccessfully disguised medical charts and oxygen monitors. Stickers from previous patients covered the cold metal frames of IV poles and the playroom was filled with children whose faces were covered with medical masks, creating a thin barrier between germs and joy. The thing I will never forget was the smell. A combination of cleaning solution, stale food, and alcohol pads filled my nose with a pungent aroma that automatically triggered my gag reflex.
Angela’s room was a few doors in, so the “fresh air” from outside the wing managed to trickle in the room and make the smell tolerable. We walked into the room and there was Angie with her shoulder length blonde hair pulled back in a headband, pink and purple Hypercolor T-shirt she received for a birthday gift the spring before, grey sweatpants, and light blue socks that were two sizes too big and engulfed her feet. Even when she was ill my sister was adorable and charming. Her personality overwhelmed any other feelings people had once they were in her presence. She had an aura around her.
“Hi Booger!” she giggled as I walked into the room. “How was your check up?” She insisted that I tell her everything so she could make sure I was doing what the doctors told me too. My check ups were always great back then so I know she must have constantly questioned why her brother with the same disease was not struggling like she was. I couldn’t blame her. Time passed quickly as we made small talk about the news, school, music, movies, whatever came up. It was nearing rush hour when we had to hit the road.
“Do you really have to go?” Angela said with a quiver in her voice
“We do sweetheart, I am sorry.” My mother sighed. “Josh has to get home for a therapy and we need to let the dog out. He has been in the house all day. But I will be back tomorrow. I promise.”
Angie’s eyes began to water, but she held firm and would not let the tears fall. She was holding them back with all the might her frail little body could muster. “Okay, but try to come early and bring some new movies for me.” I didn’t realize until that moment how much I missed her. I wanted to take away all the pain she had been through, but I knew that was impossible. So I came up with the next best thing.
“I could stay overnight, Mom. They have all the stuff I need here and I have my Vest (therapy jacket) here with me.”
“Yes, that would be great! Please, Mom!! Please let him stay!” Angie pleaded. I could tell my mom was leery of this whole thing because she didn’t want me to get sick, but she also realized that I must have missed my sister because I had never asked to do anything like this before. After a few more minutes of begging, Mom relented. She told me she would be back around lunchtime tomorrow. She blew her kids kisses and headed for the door.
Angela was so excited to have me there for the evening that I think she forgot I was her brother! All she cared about was she had company for the night and a reminder of what it was like to feel normal. I, on the other hand, was having second thoughts. The room was getting smaller and that horrid smell that seemed to dissipate earlier was free flowing back into the room. I ran into in her private bathroom and began to wretch into the sink. The thought of being there all night was way too much to handle. I started to cry.
“Are you okay, Josh?” Angie asked. I feigned some lame reply, unaware of how paper thin the bathroom door was. Angela had heard every sound in that room and knew exactly what was going on. I came out of the bathroom and my bloodshot eyes made contact with her sweet face.
“You are having second thoughts, aren’t you? You don’t want to stay.”
“No, it’s not that…I just…well…um.” I stuttered as I sat down in the chair next her bedside.
“You don’t have to stay. I would like you to, but you don’t have to. You need to make up your mind though, because mom is probably close to her car.” Angie was right. Mom didn't have a cell phone back then, so if I wanted to go home I needed to haul ass to the parking garage and hope that I could catch her. I stood up and looked at Angie…then the door….then back to Angie.
“Just go.” she muttered.
“But I don’t want you to be mad at me.” I slurred as tears ran down my face. “I thought I was okay, but I don’t think I can do this....”
“JUST GO! YOU NEED TO CATCH MOM, SO GO!” Angela yelled.
“I’m sorry. I love you.” I said as I raced out the door.
I could see Angela’s nurse heading towards her room as I bolted down the hall toward the elevators and hopped in just as the doors were closing. My mind was going crazy. What was I thinking?! I couldn’t stay there! Why in the hell did I think I was brave enough to stay in that terrible place for any longer than I had to? The elevator doors opened and I ran out loudly sobbing for my mother. I started heading for the parking ramp, when I saw her sitting in the car outside the hospital entrance. “MOM!” I wailed and jumped into the passenger’s seat of our car. I immediately wrapped my arms around her neck and told her what happened.
“I know what happened and I am sorry.” she explained. “As I was leaving the ramp, the parking attendant stopped me at the pay window. He had a call from the nurse saying that you wanted to come home. So I headed over here and was waiting for you to come out.”
I collected myself, wiping the snot from my nose and the tears from my eyes. Suddenly, I began to feel guilty. I asked my mother if Angie was mad at me. She said that Angie was upset, but was more disappointed than anything. I was so ashamed. Here was my sister who had been there for over a month with little complaint, and I couldn’t even make it through one night. What kind of a brother was I? What kind of a
person was I? Later on that evening, I could hear my mother on the phone consoling my sister and defending my behavior. I sulked in my room and knew that I had made a terrible and selfish choice and had to live with the consequences of it. Mom did a wonderful job reminding me that it was okay and that Angela still loved me, but I was certain that she had disowned me. Lord knows she had the right to.
When Angela made it home a few weeks later she wasn’t mad at me, but I could tell I hurt her. I never really apologized for letting her down that day in the hospital, but she never spoke of it either. Unfortunately, her stay at home was short lived because she caught a severe infection and had to be readmitted into the hospital. As the infection worsened, they sedated her heavily to keep her comfortable which put her into a medicated coma. I never realized how sick she truly was until it was too late for us to talk. She passed away on December 15, 1993.
It's been 16 years and I still haven't got over her dying. It breaks my heart that I wasn't brave enough to be there for her. I wish I could have told her how much I loved her while she was here, but I know Angela loves me and watches over me always. I miss you my sweet sister. I’m so sorry.
Peaceful Things,
Josh
The very thing I'm doing to stay healthy may kill me. CF or not, dedicating yourself to exercise is no easy task. It takes determination and a mild case of insanity. These bits of wisdom didn't occur to me until I decided to start swimming again and completed a few pitiful freestyle strokes in the pool at my mother's house. Within moments I'm gasping for breath, praying to God that I make it to the shallow end before I sink like a rock. Screw my pride, I was seriously wishing for some water wings!
I know how to swim...I'm just not very good at it. Because of that, Carly and I signed up for a swimming class this summer as a way to learn proper techniques and to spend some quality time together. When we got there I noticed a children's swimming class in the lane adjacent to us. I don't embarrass easily (it's hard to get embarrassed when when you've had doctors examine extraordinarily private places on your body for most of your life - "Easy doc, that thing is cold."), but there is nothing more ridiculous than a seeing a 30 year old man using a kickboard in one lane while squeaky little seven year olds are passing him by doing the backstroke. To add salt to an already chlorine-filled wound, my superstar wife Carly took to the water like a fish and swam circles around me within minutes of starting our lessons. After our hour was up, I left the pool with my lungs burning so badly I could have sworn there were fireballs lodged in them. Ah, the joys of getting back into shape. They say mild pain is a good thing. If that's true then I must be a freakin' masochist.
One of the reasons I was inspired to start swimming was because of a recent online article from the New York Times entitled: Patient Voices: Cystic Fibrosis. The article focused on several people living with Cystic Fibrosis and their daily grind to stay healthy. It made me proud and refocused my energy toward regaining some semblance of control over my health. Spending my days doing therapy or in the bathroom does not make me feel particularly efficient or empowered. I've vocalized my frustrations to Carly, who has reassured me that I'm the only one that feels like I'm not making the best of my situation. She wants me to focus on taking care of myself so we can be together for a long time. So that is what I'm doing. I can already tell it's helping because every time I've finished my workouts I end up coughing out a mixture of colored mucus, clearing my chest of the infection that constantly attacks my body. It's as disgusting as it sounds. Micro victories in a macro battle.
![[honestscrap.png]](http://3.bp.blogspot.com/_eThijzxLNBk/SluyB6bKNzI/AAAAAAAAAJk/DEbMgrfAMww/s1600/honestscrap.png)
![[Happy_101_Award.png]](http://2.bp.blogspot.com/_96nUBQsC0uI/SylRyibwgqI/AAAAAAAACXQ/8ukAimFuzg8/s1600/Happy_101_Award.png)
