PATIENT NOTE: One would think that this being my second (well, third really) battle with a critical illness that I would be an expert in all things related to being a patient, that I would have all the answers and this experience would be a breeze, right? WRONG? With each occurrence it should get easier, it should be more understandable and should be less draining. Hell, by this point I should be able to handle ANYTHING, right? Wrong again. While it is true that some things have mastered - never expecting an appointment to be on time, learning how to find the best places in each lobby to take a nap in the sun, knowing which facilities have the best 'vending machine coffee' (blech!), knowing which valets who will park my car and which ones make me do it myself. These are the easy things.
The hard things still exist; explaining all the NEW drugs to people over and over (I think I should design an 'update' card - print them and hand them out at key points in treatment ---- hmmmm possible business venture?), begging time off from employers (if I have one), filling out all the paperwork for Social Security Disability (since I am being told I cannot work during treatment), discovering a complete absence of all of the following; life insurance, funeral service contracts, a hole to put me in, a will...etc, all that 'grown-up' stuff we never seem to think about until it suddenly becomes important. What I would like to examine today is one of those special things that goes through my head at various points along this journey.... 'The Critical-Illness Time Warp"...
_____________________
While the easiest method on which to build this analogy would be to wrap it around a science fiction story, but, while out in the studio trying to figure out how to get the new kitten down out of the rafters of the garage, it stuck me that a better way to look at this from within the context of the play, 'Dancing at Lughnasa'. "Whaaaaaaaat?" You may be asking yourself. Bear with me and it will become clear...
A quick theatrical summary. The play is set in Ireland and deals with a family that is being fractured, internally and externally by forces they have very little control over, and, as we all are, forced to deal with them the best we know how.
Though I am not a 'theatre-person' per se, my oldest had a lead in this play (it was also made into a movie with Meryl Streep), so I had the chance to sit through several rehearsals performances and as I was teetering on the chair in my studio, cat in hand, the parallels just came to me.
While the main dynamic and plot of the play deals with a family of divorced, widowed and unwed sisters trying to make ends meet, trying to raise Michael - son of one of the unwed sisters, and to care for (here comes the connection) their 'Uncle Jack' who was a missionary returned from a journey of several years to Africa - where the customs and people are strange.
As a cancer patient I often times feel like Jack (played by Austin Bertok, of TSA). He is a very excitable person, who can't sit still, seems to mumble on and on (to the distraction of his neices) about places and people and events that only HE has witnessed and truly understands. The sisters (analogous to my friends and family) all seem rather bored with his 'stories' because there is so much going on in THEIR lives that poor Jack gets shuffled off to a corner chair by a window, or sent of to his room or, has a sweater tossed on his shoulders and he is sent on a walk, so he can babble to someone else....other than them. The more I thought about this the more accurate it became as a description of the life of a person with a life-threatening illness..
To those of you on the outside, this may seem trivial, or even over dramatic, but here it is. Cancer patients are sick. This does not mean we are dead, dying or moments from meeting our makers. We are also not (usually) as fragile as glass, oversensitive to music, conversation or television shows. We are also not (despite hair falling out sometimes) crumbling like zombies. We are still here, still members of families, we still (more than ever) need our friends and relatives to just help us be who we normally are - the good bad and the ugly.
Unfortunately, like Uncle Jack in the play, we get dismissed, waved off and ignored. I my case I notice this in the way my daily routine has changed. On top of being treated for cancer, which, as I have noticed in the past, has meant hospital stays, days of testing and hours of waiting room sitting, I have no job - I was laid off (conveniently?) by my employer right before I was start this current round of my battle. So my days have very little structure, and this is hard to handle at times.
In the 'before time' I had a purpose, I would get up, help get the kid ready for school, get myself ready for work and we would all head out the door and go off on our daily routines. This is very much like the lives the sisters live in the play, and we see these story lines develop through the youngest member (Michael - who was played by Cameron Lightfoot of TSA) who (like my youngest son, or others on the periphery of the cancer experience) really don't quite get the big picture.
As I watched the play and focused in on Jack, I realized that in a weird sort of way his life as a 'missionary' and mine as as 'cancer patient' were also similar in that for us, in those 'worlds' we found structure and meaning that don't exist in the 'regular world' anymore. It is very strange to say that some of the heartiest laughter, best friends and happiest times have been in the company of other patients and my medical team. This is NOT to lessen the importance and value of those friends who exist in the 'regular world' at all... by no means, it is just that the experiences on my 'journey' like those of Uncle Jack on his 'mission' are things that only 'we' can really understand.
On those mornings when I let the wheels of woe spin around my head as I sit, stuck, in my moping chair, I begin to look at my life and see this 'Time-Warp' happening, again, I may be over reacting, but from my position as a patient - who has been given a fairly shaky chance at a long life, I start to notice people and events pulling away from me.
If 'I' do not insist on it, my part in the morning rituals of getting up and getting going, are forgotten. No concern is given as to whether I even exist anymore. People dress, eat, pack for work and school, take care of the animals, get in the car and go to school and work. The end of the day is not much different. If I don't take it upon myself to be involved, life goes on without me - television shows are watched, homework is checked, household needs are taken care of -- all without me even being necessary. It is like I said in a previous post, a 'limbo-state'.
This feeling that time around me speeds ahead and time in my bubble drags on is very hard to break. Some days, I am legitimately tired. I get up, try to get the day going, sit down in the chair for a cup of coffee, then - with no pressure to really DO anything I fall a sleep, next thing I know 5 hours is gone, it's now 1 P.M. So I get up, tinker around the house so that I can say I did SOMETHING. I deal with some mail and some bills (seemingly my only contribution anyhow) then it's time to pick up the kid from school, and on into the evening routine noted above.
Justifiably, I feel the same from my friends.... "Wow, you don't LOOK sick..." the next time I see them it is, "Are you SURE you have cancer? You still have your HAIR." I can tell by the look in their eyes that they (like most people to be sure) have the same preconceptions that cancer kills and that the next words out of my mouth will be describing my imminent doom. They don't expect to hear, "I'm fine, no really. I don't feel bad at all." What I want to add some times is, "Why, SHOULD I look like a half-dead corpse with one foot in the grave?" But that would be very mean, and unfair, since with rare exception the typical outsiders do really have good, caring hearts.
So....back on stage, we can see that the dynamic between the characters in the play who are outside Jacks world is so preoccupying that Uncle Jacks' adventures are simply not that important to anyone really except him, so he totters on his way, enjoying his time 'home' but almost, but not quite reminiscing about another 'journey', back to the 'world' he had become so familiar with. A world that no matter how he tries to explain it's wonders, his family and friends will never fully understand...
I am not ready to return to that world. I am fighting hard to stay 'home' and to leave the cancer journey behind me......
The hard things still exist; explaining all the NEW drugs to people over and over (I think I should design an 'update' card - print them and hand them out at key points in treatment ---- hmmmm possible business venture?), begging time off from employers (if I have one), filling out all the paperwork for Social Security Disability (since I am being told I cannot work during treatment), discovering a complete absence of all of the following; life insurance, funeral service contracts, a hole to put me in, a will...etc, all that 'grown-up' stuff we never seem to think about until it suddenly becomes important. What I would like to examine today is one of those special things that goes through my head at various points along this journey.... 'The Critical-Illness Time Warp"...
_____________________
While the easiest method on which to build this analogy would be to wrap it around a science fiction story, but, while out in the studio trying to figure out how to get the new kitten down out of the rafters of the garage, it stuck me that a better way to look at this from within the context of the play, 'Dancing at Lughnasa'. "Whaaaaaaaat?" You may be asking yourself. Bear with me and it will become clear...
A quick theatrical summary. The play is set in Ireland and deals with a family that is being fractured, internally and externally by forces they have very little control over, and, as we all are, forced to deal with them the best we know how.
Though I am not a 'theatre-person' per se, my oldest had a lead in this play (it was also made into a movie with Meryl Streep), so I had the chance to sit through several rehearsals performances and as I was teetering on the chair in my studio, cat in hand, the parallels just came to me.
While the main dynamic and plot of the play deals with a family of divorced, widowed and unwed sisters trying to make ends meet, trying to raise Michael - son of one of the unwed sisters, and to care for (here comes the connection) their 'Uncle Jack' who was a missionary returned from a journey of several years to Africa - where the customs and people are strange.
As a cancer patient I often times feel like Jack (played by Austin Bertok, of TSA). He is a very excitable person, who can't sit still, seems to mumble on and on (to the distraction of his neices) about places and people and events that only HE has witnessed and truly understands. The sisters (analogous to my friends and family) all seem rather bored with his 'stories' because there is so much going on in THEIR lives that poor Jack gets shuffled off to a corner chair by a window, or sent of to his room or, has a sweater tossed on his shoulders and he is sent on a walk, so he can babble to someone else....other than them. The more I thought about this the more accurate it became as a description of the life of a person with a life-threatening illness..
To those of you on the outside, this may seem trivial, or even over dramatic, but here it is. Cancer patients are sick. This does not mean we are dead, dying or moments from meeting our makers. We are also not (usually) as fragile as glass, oversensitive to music, conversation or television shows. We are also not (despite hair falling out sometimes) crumbling like zombies. We are still here, still members of families, we still (more than ever) need our friends and relatives to just help us be who we normally are - the good bad and the ugly.
Unfortunately, like Uncle Jack in the play, we get dismissed, waved off and ignored. I my case I notice this in the way my daily routine has changed. On top of being treated for cancer, which, as I have noticed in the past, has meant hospital stays, days of testing and hours of waiting room sitting, I have no job - I was laid off (conveniently?) by my employer right before I was start this current round of my battle. So my days have very little structure, and this is hard to handle at times.
In the 'before time' I had a purpose, I would get up, help get the kid ready for school, get myself ready for work and we would all head out the door and go off on our daily routines. This is very much like the lives the sisters live in the play, and we see these story lines develop through the youngest member (Michael - who was played by Cameron Lightfoot of TSA) who (like my youngest son, or others on the periphery of the cancer experience) really don't quite get the big picture.
As I watched the play and focused in on Jack, I realized that in a weird sort of way his life as a 'missionary' and mine as as 'cancer patient' were also similar in that for us, in those 'worlds' we found structure and meaning that don't exist in the 'regular world' anymore. It is very strange to say that some of the heartiest laughter, best friends and happiest times have been in the company of other patients and my medical team. This is NOT to lessen the importance and value of those friends who exist in the 'regular world' at all... by no means, it is just that the experiences on my 'journey' like those of Uncle Jack on his 'mission' are things that only 'we' can really understand.
On those mornings when I let the wheels of woe spin around my head as I sit, stuck, in my moping chair, I begin to look at my life and see this 'Time-Warp' happening, again, I may be over reacting, but from my position as a patient - who has been given a fairly shaky chance at a long life, I start to notice people and events pulling away from me.
If 'I' do not insist on it, my part in the morning rituals of getting up and getting going, are forgotten. No concern is given as to whether I even exist anymore. People dress, eat, pack for work and school, take care of the animals, get in the car and go to school and work. The end of the day is not much different. If I don't take it upon myself to be involved, life goes on without me - television shows are watched, homework is checked, household needs are taken care of -- all without me even being necessary. It is like I said in a previous post, a 'limbo-state'.
This feeling that time around me speeds ahead and time in my bubble drags on is very hard to break. Some days, I am legitimately tired. I get up, try to get the day going, sit down in the chair for a cup of coffee, then - with no pressure to really DO anything I fall a sleep, next thing I know 5 hours is gone, it's now 1 P.M. So I get up, tinker around the house so that I can say I did SOMETHING. I deal with some mail and some bills (seemingly my only contribution anyhow) then it's time to pick up the kid from school, and on into the evening routine noted above.
Justifiably, I feel the same from my friends.... "Wow, you don't LOOK sick..." the next time I see them it is, "Are you SURE you have cancer? You still have your HAIR." I can tell by the look in their eyes that they (like most people to be sure) have the same preconceptions that cancer kills and that the next words out of my mouth will be describing my imminent doom. They don't expect to hear, "I'm fine, no really. I don't feel bad at all." What I want to add some times is, "Why, SHOULD I look like a half-dead corpse with one foot in the grave?" But that would be very mean, and unfair, since with rare exception the typical outsiders do really have good, caring hearts.
So....back on stage, we can see that the dynamic between the characters in the play who are outside Jacks world is so preoccupying that Uncle Jacks' adventures are simply not that important to anyone really except him, so he totters on his way, enjoying his time 'home' but almost, but not quite reminiscing about another 'journey', back to the 'world' he had become so familiar with. A world that no matter how he tries to explain it's wonders, his family and friends will never fully understand...
I am not ready to return to that world. I am fighting hard to stay 'home' and to leave the cancer journey behind me......
I recognized in your blog a comment we made when visiting with you over the holidays. "You LOOK great", "I would never guess". Forgive my insensitivity; the remarks were meant for well but were made from ignorance of what they translate to for you.
ReplyDeleteScott, I can't even begin to tell you how much I, and so many others that have gotten the blessing of getting to know you, matter. I mean really-in-the-big-scheme-of-things matter. & that's the truth.
Be well my friend. You teach me important things. You are important, period. & that's the truth too.
Laura, don't be upset...my comments were not addressed to you at all... My wording could have been better, I guess. My meaning was that we (the cultural we) associate the word 'cancer' with a 'look'. We expect (thanks to hollywood) that all cancer patents are bed-ridden, covered in sores, with 50 tubes coming out of their bodies to be the 'norm', so when we meet up with people undergoing treatment who don't look that way, we are kind of shocked...in a good way... so, don't feel bad...o.k. I will try to make my writing clearer in the future!!!
ReplyDeleteOkay, I just got to read this. And first can I thank you for this wonderful analogy. Love it! Okay, so I have to correct one little item... all of the girls are unwed! Never having been married. Okay, phew... got that off my chest. I thin this was a beautiful piece, I am touched that you were so touched by the production. Will keep looking out for your posts.
ReplyDeleteRosie