Have you ever had one of those days where you just know that you were supposed to meet someone? Like fate just stepped right in and touched you both, for whatever the reason? This was one of those days.
My nurse last night came in and we had a little chat, speaking openly about the attitudes and outlooks of different patients. She said that it bothered her that older CF patients take good care of themselves, parents of newly diagnosed CF patients take near paranoid care of their kids, but CF patients between the ages of 16-25 are damaging themselves. She said it was as though they fluctuated between feeling invincible to feeling like they were on death row. I could tell that she was passionate about her work and her patients and truly wanted to help them without pushing them away.
I told the nurse about who I was when I was 16-22. I had been told so many times that I shouldn’t expect to live long, that I gave up. Not in an ’emo’ sort of way, but in a rebellious sort of way. Why do I need to study this, I thought, I’m never going to live long enough to need it. I said and did things that I know I shouldn’t have done. I don’t regret doing them. Even the worst of things. I am sorry if I hurt anyone along the way, but I’m the one who has to live with that. And those bad decisions helped mold me into who I am today. It wasn’t until my brother died, and later when I got married that I realized I wasn’t just living for me anymore. Someone needed me. It was time I grew up and took responsibility for my own health and learned to make the best of it. No one’s time on this earth is guaranteed. You are alive. Make it count.
She and I each exchanged some deep, personal feelings on the subject and provided one another with a fresh perspective on life, on having a positive attitude, and on how we can each improve the way we help others who are going through this. Her words made me think and will stay with me always.
At another point in the day, the home infusion representative came by to introduce herself. She was taken aback by my appearance, not because I look so sickly, but because she thought she had the wrong patient based on my birth date. She thought I was “pushing 30″…This may not be profound, but seeing as how one of the nurse’s yesterday referred to me as “mom” (making me feel instantly old, as I had wrongly assumed we were closer in age), hearing someone say that I look like I’m “pushing 30” made me feel better. Yeah…I can be vain. So what?
My nurse tonight didn’t make a great impression on me at first. We didn’t instantly click like I had with some of the previous nurses. But it didn’t take long for both of us to realize that we had been quick to judge one another. Her constant staring at and studying my tattoos, which I took as scrutiny, turned out to be a genuine interest, as she had just recently gotten a tattoo. She’s in her late 50s. She let the gray come in. She custom made Converse sneakers on line for herself on her birthday (they were pretty sweet looking, too). For her last tattoo, she had friends “tail gate” in the parking lot of the studio. She came back in to show us her tattoo play list on her ipod. She has exceptional taste in music, by the way. She began to explain what the tattoo on her left forearm meant. It was a large skeleton key, adorned with various designs and colors. She said, “A key symbolizes control. Whenever I look at my arm, I am reminded that I am in control of my life. I don’t have to wait for other people’s approval. This is my life.” She talked about how many concerts and shows she had missed while in college because she would call all of her friends, “Do you want to go with me?” And if no one else would go, she would stay home. “I missed out on so many fun things. Why? What was I waiting for? Now I go to shows all the time, even by myself. It’s great.” She follows certain bands all around the Carolinas and Georgia. She wants to go to Comicon. She wants to go to Nashville because, “Jack White is there.” Again, she’s in her 50s.
This woman’s outlook on life was incredible. She raised her children in music. She knows how to appreciate beautiful things. And if there is something she enjoys, she goes out and does it. She doesn’t put it off until next time, or wait for someone else to hold her hand through it. She was living her life unabashedly. And with a good soundtrack.
Another woman I spoke with today was a woman I have only recently had the pleasure of calling friend. She chose to share a private, personal story with me. I cannot divulge any further, out of respect to her. But I would like to say that I am in awe of her strength and perseverance, and her ability to love. Incredible.
These women reminded me that I am only as old as I feel, that I need to not be afraid or ashamed to embrace the things in life that bring me joy and confidence, and to be compassionate along the way. They reminded me to love with all that I am, and to be true to myself, while sharing what I can with those who need it.
It was truly a remarkable day.
This picture was taken at sunset, from a 10th floor observation window at MUSC. That is the Cooper River Bridge in the background. We went upstairs after our picnic dinner and took in the glorious arrival of night. And yes, I said picnic, complete with blue gingham picnic blanket. We made mozzerella Caprese from fresh basil leaves, tomatoes, and mozzerella cheese, with balsamic vinegar. We had various items from Carrabas Italian restaurant. And we had chocolate cake and apple pie for dessert. This is how my sister and I handle hospital stays. She and our Mom are still here, camping out in my room.
I spent part of the day sitting outside and soaking up the sun with a good friend. We laughed a lot. Which is a good thing, because at one point in the evening, we all ended up crying. Why? That’s neither here nor there. It happened. We move on.
Personally, I have been fighting a touch of the survivor’s guilt again. I finally got a good look at the CF girl in the room next door. People ask why I’m never honest about my health or how I am feeling physically. This girl. This is the reason why. I know that no matter what ache or pain I am complaining about, somewhere out there is another CF patient, half my age and double the pain. How is it fair that she is in there, gagging and hacking so hard all day and night, until the point of violently throwing up, fiancee at her side, while I’m over here talking on Twitter, singing to tracks on Spotify, going for walks through the garden. She’s so young and has so much to live for. I know that’s not in her control. But, as to her quality of life, she holds the key.
In spite of a lot of things, and even a lot of people, I know that I am going to be okay. Today was a good day.
“You can unlock any door if you only have the key.”