MASKED mayhem

I was out tonight, and that's when I got to thinking about the past few months...
While being sick so often as of late, I started wondering how some of the kids I grew up with were doing. I started to think how bad it really sucks, that I only remember them. All I have are distant memories. I currently do not know anyone with CF. I mean, I know of them..I see them in the clinic as I walk to an assigned room. I hear them coughing down the hall when I am a patient. And I see their pictures and profiles on Facebook or CF websites... But there is nothing I can connect with on a personal level. I haven't bonded with any of them. For me it's not the same to read some blog, or message online in some support chat room. It's just not the same. It may work for others. Maybe for families of those with children that have been newly diagnosed. For me it just doesn't work. I have been there when it was so much different.....if that makes sense. The only connection that I seem to truly feel any sense of attachment towards, are the pictures I see in the clinic, or on the bulletin board hanging on 5 tower..Familiar faces of the kids that no longer are with us.

We are forced to wear masks when we are within proximity of one another. We can not shake hands. We can not hug, or console one another. We fight the same battle, but always apart.

The disease is consuming, and during our most fragile hours, overwhelming and discouraging.

It was hard to cope when it was all taken away.

I was in fifth grade when everything changed. I know alienating us from one another wasn't a deliberate act or measure of cruelty. I understand why it was done, and I get the importance of it having been addressed. The result of Cf-er's interacting with one another in close quarters, pose a greater risk of spreading Pseudomonas aeruginosa lung infections. We are highly susceptible to the mutations of this bacteria, that are proven deadly to the CF community. So, they did away with all activities. No more CF camp. No holiday parties.
I remember how hard it was to go into the hospital for weeks at a time. And I know that's an obvious statement...As a kid, age 5, 6, 7, 8, 9 whatever years old...being yanked from school for long periods of time. Missing out on relationships, and digging holes academically that were forever overwhelming to dig out of...But the thing that always made it tolerable..The part that made 3 weeks at a time,in the hospital, bearable and not so lonely...

well, that was having "friends" when I was in there.

We knew each other when we went in. When we were sick, we had each other to pass the time. We went to physical therapy together. We were able to eat dinner in the same room. There wasn't anything we felt like hiding. HIPPA didn't exist. Good and bad I suppose, but as kids we could care less about that sort of privacy. We were able to share things. When we had to get an IV, we could ask to hold each others hand. When we were scared to ask, we knew we had each other to turn to. I remember watching the older guys do their treatments.

I remember seeing those who were sicker. It was important for me to see the varying stages of the illness.

Over time it was hard not to notice the physical challenges I saw as my friends grew older. I knew there was a separation there. At an early age, I was made very aware of the kids who showed varying severity of the illness. I was lucky to be healthier then most, though it terrified me to think where I could end up. Some guys took great care of themselves, and it was obvious. While for some it was clear that they were slacking on their regimen. Personally, I've sat on both sides of the glass.

When we were in the "joint", we played all kinds of things to pass the time. I remember running around the hallways playing football. One armed, dragging an IV pole, while hacking up a lung, touch...sometimes even tackle football! We knew how much air we could put on the deep ball so that it didn't hit the information signs hanging along the ceilings. It looked like some kind of screwed up version of Arena Football the way we played down the narrow hallways. The nursing station, and a wheelchair were opposite end zones. It was a blast.

CF camp was something I was fortunate to be apart of. I was lucky enough to attend from age 5 all the way until I was 11. After that, camp was no more. It was one week without parents. And one week with each other. The councilors were great. The week was amazing.