Friday night, Julie took me aside to tell me the results of Jacob’s latest throat culture. Each time he goes to an appointment with his CF doctor they shove a swab down his throat and test him for harmful bacteria. One bacteria they look for is Pseudomonas aeruginosa, a particularly menacing bug for people with cystic fibrosis that can create havoc on a patient’s lungs. To combat it the antibiotic tobramycin, or TOBI, is added to the daily regiment of inhaled medicines a CF patient must undergo each morning and night. This latest test revealed that Jacob is culturing Pseudomonas aeruginosa and will be starting a daily regiment of TOBI. Although he only showed a small amount of the bacteria, the news is still unsettling, another reminder of how helpless we sometimes feel in combating CF.
Soon after Julie gave me the news, the elephant returned. The elephant is this pressure I feel on my chest that takes my breath away. The elephant is always accompanied with his friend, the snake, who winds its way through my stomach and causes unrest. Joining them this time, for a limited engagement, was the sloth, weighing down on my back, making slouching on the couch in front of the television or curling up in a ball the only things I wanted to do.
The following afternoon, with Julie away working and Sophie attending a birthday party, Jake and I had some “guy time” together. We could have taken in a movie, rode our bikes, maybe throw the ball around. No, Jake just wanted to hang out in the house, rent a video game and play some Rock Band. I love Rock Band. For an old drummer whose Rogers kit is cased up and collecting dust in the garage, the opportunity to play simulated drums is a great joy and an even greater stress reliever. It’s been a great fun watching Sophie and Jake take to the drums and singing. I know that these game components in no way replace the real thing, but it gives me hope that both children will take up actual band instruments come junior high, or sooner.
Sophie is older and more coordinated with the drumsticks; she has a knack for percussion. Jacob also exhibits talent in drumming, though he has to work a little harder than his sister. I know what it’s like to have to try harder when an older sibling is a born natural, but I’ve seen that spirit in him, a determination to learn the rhythms and the beats by practicing songs over and over again until he gets it right. I have watched him go from fumbling and failing a song on Rock Band to scoring four stars and a 90%.
For me, it’s exciting to be exposed to new artists featured in the game. But like any parent I’m even more excited when my children take a liking to songs from my formative years. The generation gap narrows a little bit, especially when a song like Survivor’s “Eye of the Tiger” gets played. I must have listened to the song a thousand times since first hearing it in Rocky III, and watching Sophie and Jacob play the song in Rock Band, I’ve been reintroduced to a rock anthem I used to listen to constantly on my portable cassette recorder. And of course there is the theme of never giving up and fighting to the end. If ever there were a mainstream rock song I want Jake to play on the simulated drums over and over again, it’s this one. I hope it will inspire Jake to continue being a fighter against this illness, remaining strong and courageous like Emily Schaller, a young woman with CF riding her Vespa scooter and bicycle from Chicago to Burbank in hopes of getting on The Ellen DeGeneres Show to help raise awareness for CF.
By nightfall Saturday, Jake and I had played “Eye of the Tiger” five or six times. Even though we would tackle more difficult selections, we kept coming back to Survivor. Our guy time wound down with Scooby-Doo and pizza before Sophie returned home and it was time for bed. The end of the perfect day. Yet the elephant was still in the room and the snake was still mucking up my gut. Eventually Julie came home and the two of us talked about our mutual anxiety. Exhausted from a long night, she went to bed while I settled down for a drink. And another, and another.
Around midnight, I sat down to write this column in a haze of scotch and tears. I must have typed a thousand words before I hit the wrong key and everything disappeared; my first draft was accidentally deleted. Devastated at first, I eventually felt the relief I needed having gotten the tormented words, the outpouring of my heart, released from my aching body. By 2:00 AM I found my way to bed and fell asleep.
Throughout the week I’ve been climbing out of the hole that I sunk into on Friday night. With the love of the Julie and the kids, (and plenty of Rock Band) I feel like I’m back to normal and ready for another round against this fucking disease. There are times when the fear and worry get the better of me and in order to refocus and find the determination to keep moving forward I need to write about it, to cry about it, to howl at the moon, and sometimes I just need to sit down with my family and rock out to the “Eye of the Tiger.”