Monday, May 16, 2016

Chapter Four, Part 3: The Bubble

In this month in 1976, a Movie of the Week called “The Boy In The Plastic Bubble” debuted. This is going to date me – but here goes:  I remember watching that movie and being fascinated by the interaction of John Travolta’s character Todd and his parents and the fact that the movie was based on a true story.  It was about a boy who is born with no immune system and thus has to live his entire life inside a plastic room, a “bubble” in which everything has been sterilized and through the wall of which he sees the world while he remains protected.  

During the whole time that Dad was sick, my family and I created a kind of Bubble around Dad; it was sometimes a place where we were struggling, but sometimes it was a comforting place too.  We needed The Bubble in part because we were worried about Dad's immune system, especially after he had started chemo, but we had other reasons for it too.  We felt we needed to close ranks to protect Dad from everything - from Cancer and from having to worry about anything on The Outside.  Fighting this thing was a 24-7 job for all of us, and we needed The Bubble around us to keep us focused, to keep our eyes on the goal which was to get Dad better.

As far as I could tell, Dad liked us to be there in the Bubble with him; at one point he said, “One good thing about being sick is that I get to see my kids and grandkids much more often!”  We tried to make life as good as it could be for Dad for the time being in The Bubble; we talked to him a lot about things that we had planned and that we thought he would enjoy after he got out of rehab; two big things he wanted to do were to go to Barnes & Noble and to the movies.  Put those on the Revised Bucket List – check!  Dad was very excited about seeing his two dogs and, of course, about getting Foster the Cat as soon as he got home.  For entertainment in the meantime, we set him up with a portable DVD player in the rehab hospital, but his attention span was way too short for him to care about watching movies or even TV shows.  At night, when he was trying to go to sleep, he often said he wanted to watch TV, but after it had been on for only a minute or two he would change the channel or just turn the TV off.  My mom’s friend brought their greyhound Buddy for an extra visit, and Dad seemed to enjoy sitting with him in the sun in the courtyard of the rehab facility one afternoon.  It was all relative, though, and we were just marking time until Dad could get out of there and, even more importantly, until he was feeling better.

Dad with Buddy at the rehab facility
The daily therapy sessions continued; we tried to cheer Dad on and to point out even the slightest improvement in skill level, but he was nonplussed and non-impressed with his own progress.  “Big deal!” he said angrily after the P.T. told him that he had done a good job with his leg exercises that afternoon.  “A few weeks ago I could run 20 miles and not even be tired.”  It’s hard to argue with that.  

I’ve seen lots of things written about something called “Helicopter Parenting,” when a child’s parents are overly involved in everything going on in the child’s life, so much so that the child never learns how to fight his own battles or to become self-sufficient.  This was different, though, it was necessary for all of us to Helicopter around Dad to care for him, to ensure his safety, to get him the medical attention he needed, and – last but not least – so that we could just be together, in case on one not-too-far-off day we couldn’t.  

Dad, wearing his "Healing Hat" that his sister sent him after his surgery
Something that someone told me early on in my Dad’s illness was that each person in the family would probably deal with the crisis in a different way; as my friend pointed out, our roles in the family and our personalities had long since been established, and having a crisis to deal with wasn’t about to change that.  Something else I learned along the way was that we all had to take turns being The Strong One; being the Big Sister didn’t have anything to do with age – we all took turns being the Leader, the Captain, the Positive One, and, as well,  we all took turns in despair.

The Bubble was by invitation only, and it was an exclusive affair.  There was only so much room and so much oxygen in The Bubble.  Even close friends and extended family members had to watch us from outside.  I’m sure some of them felt like we were poor communicators or selfish or whatever, but we couldn’t worry about that then and I can’t worry about it now.  We did what we needed to do, and I am not for one second sorry about that.  We put all of our energy into doing whatever it took to take care of Dad.  Being with him was hard work a lot of the time; there was no reading a magazine or surfing the Internet when we were with Dad.  The neurological damage left him with no regard for safety, and, not to belabor a point, but, simply put, he didn’t sleep.  Almost at all.

It was hard NOT to think about Cancer and to be alarmed and afraid about the future around him, although, at least for me, being away from him was much, much worse.  I needed to be with him as much as I could arrange, not for his sake or for my family’s but for my own.  I loved talking to him, even when he was somewhat confused or forgetful; some of the things he said were so inspirational, some were very touching, some were heartbreaking, and others were just everyday kinds of conversational things, but I loved them all the same.  I couldn’t bear to let myself imagine how it would be if things didn’t go our way; I was convinced that we would beat the odds, however we had to go about doing it.  There in that Bubble, we were so exhausted, and scared, and desperate, but we were in this thing together and that’s what we thought counted.  

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