To Be, or Want To Be, or Don't Get It Be
First of all, I’m getting feedback from readers that interpret my mood as “discouraged”, and otherwise less than positive. I can only say that I feel fine, psychologically. These postings are intended to be as honest as I can be. Some days I am frustrated, angry, or down right pissed off. I further intend to use humor to illustrate the way I look at all types of life’s circumstances. At NO TIME do I feel victimized by life. My strength comes from within, and is reinforced by Robbi's love and encouragement. Jayme and Emily are constant sources of inspiration.
Hey, I've got it better than many others – no one is bombing my neighborhood, and my family, (thanks to so many of you), has never lacked a single thing to sustain our lives. So please read the following posting in this light. This one addresses a challenge I’ve been working thru, that deals with relationships.
This posting was originally directed to others who have chronic and terminal disease. However, after I spoke with several family members and a few friends, I realized that this topic is relevant to anyone who has first hand experience. So I pose this question to everyone… “I wonder if you experience this process the same as I do?” Please comment – early and often.
As our condition worsens, it happens in stages, or so it seems. So, when we feel like we have leveled off, we learn to cope with the new limitations. I figure out how far I can reach without pain and how far I can walk without coughing, and then I remember to ask for help or use some tool/aide that allows me to avoid the discomfort. Within a few days (not as fast as monkeys learn) I get the habits in place and I feel like I'm doing OK. It's around this time that friends and family tell me that I look so much better. Oh, Yeah - I look better because I'm spending more time in bed or sitting in a chair at the laptop. I've learned to limit my activity to a) going to the bathroom, b) making a sandwich and getting my drink, and putting a new DVD in the player. Oh yeah, I'm doing much, much better.
It's true that I am doing better - better than I was when I had the infection in my lungs... better than when I had to use the bedside urinal... better than when I was when I had to have some one wash me while I rolled over on my side, in the hospital. I am feeling so much better on many levels, and that is NOT a sarcastic message.
Neither am I angry at, nor resentful of, those that keep pointing out how good I look. Wait, maybe I am… a little...
There are those who come to visit and are quick to say, "You look so much better than I expected (based on the updates from Robbi and others that had seen me at my worse)," and "You sound so much better! You aren't coughing nearly as much as you were last week. It's true. I do look better and I am coughing less. I am encouraged that I can get out of bed and do some things around here - so that I don't need to ask Robbi to do them for me. It's even better when I can do something FOR Robbi. Those are too rare instances; but it is nice to see a smile flash on her face for even a moment, when the tiniest bit of weight/responsibility is ever so fleetingly removed. (Too melodramatic, perhaps...) The issue I am trying to express is that I am frustrated by the 'cheering' and encouragements that friends and family express as soon as they hear any type of positive information.
That is a pretty broad statement, so allow me to clarify. Example: A person calls and asks how I'm doing. If I answer "fine", "better", or "OK"; the typical response is, "That's GREAT! I can hear it in your voice - you sound better. What do the doctors say?" My reply is usually, "I still have Scleroderma." Now, when the caller is someone "In-the-Know", such a comment is taken without malice. It signifies that I am reminding them, and myself, that all rules are still in effect - my condition is chronic and terminal, and that the latest episode signifies a drop in overall performance but now I am stabilized, until the next episode. The mutual respect and understanding that exists between us "In-the-Know" people = the assurance that my snappy answer is not taken as a sarcastic +/or hurtful reply.
My difficulty, (which is the root of my frustration and growing annoyance), is dealing with those who are not "In-the-Know". This group is a mixture of (1) “Newbies”, (2) “Want-to-Bes”, and MOSTLY (3) “Don't-Get-It-Bes”.
Group (1) requires patience and lots of background. These people are an investment of time that is often worth the experience. Although it can be initially draining to educate them, and some days I just can't do that, if I pay attention to their ability to grasp the situation I may gain a person "In-the-Know"... or even a new friend.
Group (2) are those who are usually already within our closer circle of family & friends who haven't fully grasped the big picture. As friends, they have already been accepted into the closest circle of trust. They are caring people who have earned our respect for the way they live their own lives. The reason they are considered "Want-To-Bes" is that they (rightly) sense that they are not "In-the-Know", but desperately want to be. (Was that too obvious?) The break-point is that we are at a stalemate. The ways that this impasse is reached are infinite - as are the number of ways that it may be breached... but it never seems to happen. So, these people tend to become a major drain on my energy and patience. Thankfully, it is rare that such a dysfunctional situation causes a loss of friendship. Most often the relationship evolves into a more distant one where the original attractions to friendship can be called upon and enjoyed - within the fewer encounters that take place. When a “Want-To-Be” is a family member the cycle is endless. The closer and more personal the original relationship, we tend to invest a vastly disproportionate amount of time to help them graduate to "In-the-Know". I suppose it is my own dysfunction that allows such situations to exist... However; I don't need to justify the existence of a condition, (no matter how dysfunctional), to explain how I feel about it. Perhaps I will delve into that idea within a later session.
Group (3)-a is the saddest group. I am fortunate that none of my close family fall into this category. I can only imagine the pain that may be inflicted upon all who are involved, when this circumstance is manifest. Robbi and I openly confront one another when ever we observe that the other of us is unable to work through a troubling family situation. With this honesty, we have faced and resolved most dysfunctional-family relations. I am quite sure our families will disagree with this assessment… but their agreement is not required, to define a resolution. What can not be contested is that all of our close family is now “In-the-Know” and we are fortunate to enjoy their love and support.
Group (3)-b are the friends that began In-the-Know and then for reasons that only they can explain, we watched them drop like a rock from there to Group (3). Sometimes there is an incident that precipitates the transition. Sometimes it’s an evolution so gradual that it becomes noticeable only after the line has been crossed. When you wonder why you have to down-play the good news so that someone doesn’t start making inquiries about your return to pre-disease activity – you may have crossed the line. When you wonder why you have to down-play the bad news so that that same someone doesn’t put on the Cheerleader sweater, shake the pompoms, and yell “David, David, he’s our man, if he can’t do it, NO ONE CAN!” – You may have crossed the line. The enjoyment you’ve shared with them has accumulated over time and strengthens with each moment – the good, the bad, and the sad. As a friendship matures, trust builds. So, when the realization that a friend is not adapting to the new circumstance, (which is your disease), it is natural that you may turn your attention to them. As friends they deserve your attention. They deserve all the attention you can muster. So what to do when they don’t understand? There is no formula for saving friendships. We may do whatever we did to build and maintain the friendship from its beginning. It is very sad when we reach the realization that they are “Don't-Get-It-Bes”. When the transition to “Don't-Get-It-Bes” is the result of a single incident – for instance: they have rejected or disrespected you – the decision to dissolve this friendship might seem obvious; however, from experience, I can tell you it is not. (This story is not yet ready to be told.) There is history - laughter, sharing of very personal issues, and other times when they helped you with a serious issue. It just seems like it won't get better, and you hope it won't get worse. This is an extreme circumstance.
As mentioned above, I've been hearing that people, who are relatives and friends, are having similar experiences. Their friends ask, "Has David gone into remission yet?" "Has the stem cell transplant cure his disease?"
Of course there is genuine interest in my progress. People naturally want to feel that they have had a positive impact. My sister tells me that occasionally one of these people will begin to understand. When that happens, she feels as though the word has reached out a little further. It is all about educating people. Little by little, the message is spreading and that maybe someone will hear about Scleroderma and that person will have an affect on the solving of it's cause... and cure. I've got to admit, with that intention in mind, it eases the frustration - and I'm more inclined to spend more time trying to get thru to the "Want-To-Bes". Thanks Ilene!!!
These last few days I've been reestablishing contact with many of my co-Sclero partners. I am gathering more info on their conditions and how they have been coping with their lives since last we spoke. I hope to be able to share some of this soon.
Thank you all for your contributions to this mental health session...
Hey, I've got it better than many others – no one is bombing my neighborhood, and my family, (thanks to so many of you), has never lacked a single thing to sustain our lives. So please read the following posting in this light. This one addresses a challenge I’ve been working thru, that deals with relationships.
This posting was originally directed to others who have chronic and terminal disease. However, after I spoke with several family members and a few friends, I realized that this topic is relevant to anyone who has first hand experience. So I pose this question to everyone… “I wonder if you experience this process the same as I do?” Please comment – early and often.
As our condition worsens, it happens in stages, or so it seems. So, when we feel like we have leveled off, we learn to cope with the new limitations. I figure out how far I can reach without pain and how far I can walk without coughing, and then I remember to ask for help or use some tool/aide that allows me to avoid the discomfort. Within a few days (not as fast as monkeys learn) I get the habits in place and I feel like I'm doing OK. It's around this time that friends and family tell me that I look so much better. Oh, Yeah - I look better because I'm spending more time in bed or sitting in a chair at the laptop. I've learned to limit my activity to a) going to the bathroom, b) making a sandwich and getting my drink, and putting a new DVD in the player. Oh yeah, I'm doing much, much better.
It's true that I am doing better - better than I was when I had the infection in my lungs... better than when I had to use the bedside urinal... better than when I was when I had to have some one wash me while I rolled over on my side, in the hospital. I am feeling so much better on many levels, and that is NOT a sarcastic message.
Neither am I angry at, nor resentful of, those that keep pointing out how good I look. Wait, maybe I am… a little...
There are those who come to visit and are quick to say, "You look so much better than I expected (based on the updates from Robbi and others that had seen me at my worse)," and "You sound so much better! You aren't coughing nearly as much as you were last week. It's true. I do look better and I am coughing less. I am encouraged that I can get out of bed and do some things around here - so that I don't need to ask Robbi to do them for me. It's even better when I can do something FOR Robbi. Those are too rare instances; but it is nice to see a smile flash on her face for even a moment, when the tiniest bit of weight/responsibility is ever so fleetingly removed. (Too melodramatic, perhaps...) The issue I am trying to express is that I am frustrated by the 'cheering' and encouragements that friends and family express as soon as they hear any type of positive information.
That is a pretty broad statement, so allow me to clarify. Example: A person calls and asks how I'm doing. If I answer "fine", "better", or "OK"; the typical response is, "That's GREAT! I can hear it in your voice - you sound better. What do the doctors say?" My reply is usually, "I still have Scleroderma." Now, when the caller is someone "In-the-Know", such a comment is taken without malice. It signifies that I am reminding them, and myself, that all rules are still in effect - my condition is chronic and terminal, and that the latest episode signifies a drop in overall performance but now I am stabilized, until the next episode. The mutual respect and understanding that exists between us "In-the-Know" people = the assurance that my snappy answer is not taken as a sarcastic +/or hurtful reply.
My difficulty, (which is the root of my frustration and growing annoyance), is dealing with those who are not "In-the-Know". This group is a mixture of (1) “Newbies”, (2) “Want-to-Bes”, and MOSTLY (3) “Don't-Get-It-Bes”.
Group (1) requires patience and lots of background. These people are an investment of time that is often worth the experience. Although it can be initially draining to educate them, and some days I just can't do that, if I pay attention to their ability to grasp the situation I may gain a person "In-the-Know"... or even a new friend.
Group (2) are those who are usually already within our closer circle of family & friends who haven't fully grasped the big picture. As friends, they have already been accepted into the closest circle of trust. They are caring people who have earned our respect for the way they live their own lives. The reason they are considered "Want-To-Bes" is that they (rightly) sense that they are not "In-the-Know", but desperately want to be. (Was that too obvious?) The break-point is that we are at a stalemate. The ways that this impasse is reached are infinite - as are the number of ways that it may be breached... but it never seems to happen. So, these people tend to become a major drain on my energy and patience. Thankfully, it is rare that such a dysfunctional situation causes a loss of friendship. Most often the relationship evolves into a more distant one where the original attractions to friendship can be called upon and enjoyed - within the fewer encounters that take place. When a “Want-To-Be” is a family member the cycle is endless. The closer and more personal the original relationship, we tend to invest a vastly disproportionate amount of time to help them graduate to "In-the-Know". I suppose it is my own dysfunction that allows such situations to exist... However; I don't need to justify the existence of a condition, (no matter how dysfunctional), to explain how I feel about it. Perhaps I will delve into that idea within a later session.
Group (3)-a is the saddest group. I am fortunate that none of my close family fall into this category. I can only imagine the pain that may be inflicted upon all who are involved, when this circumstance is manifest. Robbi and I openly confront one another when ever we observe that the other of us is unable to work through a troubling family situation. With this honesty, we have faced and resolved most dysfunctional-family relations. I am quite sure our families will disagree with this assessment… but their agreement is not required, to define a resolution. What can not be contested is that all of our close family is now “In-the-Know” and we are fortunate to enjoy their love and support.
Group (3)-b are the friends that began In-the-Know and then for reasons that only they can explain, we watched them drop like a rock from there to Group (3). Sometimes there is an incident that precipitates the transition. Sometimes it’s an evolution so gradual that it becomes noticeable only after the line has been crossed. When you wonder why you have to down-play the good news so that someone doesn’t start making inquiries about your return to pre-disease activity – you may have crossed the line. When you wonder why you have to down-play the bad news so that that same someone doesn’t put on the Cheerleader sweater, shake the pompoms, and yell “David, David, he’s our man, if he can’t do it, NO ONE CAN!” – You may have crossed the line. The enjoyment you’ve shared with them has accumulated over time and strengthens with each moment – the good, the bad, and the sad. As a friendship matures, trust builds. So, when the realization that a friend is not adapting to the new circumstance, (which is your disease), it is natural that you may turn your attention to them. As friends they deserve your attention. They deserve all the attention you can muster. So what to do when they don’t understand? There is no formula for saving friendships. We may do whatever we did to build and maintain the friendship from its beginning. It is very sad when we reach the realization that they are “Don't-Get-It-Bes”. When the transition to “Don't-Get-It-Bes” is the result of a single incident – for instance: they have rejected or disrespected you – the decision to dissolve this friendship might seem obvious; however, from experience, I can tell you it is not. (This story is not yet ready to be told.) There is history - laughter, sharing of very personal issues, and other times when they helped you with a serious issue. It just seems like it won't get better, and you hope it won't get worse. This is an extreme circumstance.
As mentioned above, I've been hearing that people, who are relatives and friends, are having similar experiences. Their friends ask, "Has David gone into remission yet?" "Has the stem cell transplant cure his disease?"
Of course there is genuine interest in my progress. People naturally want to feel that they have had a positive impact. My sister tells me that occasionally one of these people will begin to understand. When that happens, she feels as though the word has reached out a little further. It is all about educating people. Little by little, the message is spreading and that maybe someone will hear about Scleroderma and that person will have an affect on the solving of it's cause... and cure. I've got to admit, with that intention in mind, it eases the frustration - and I'm more inclined to spend more time trying to get thru to the "Want-To-Bes". Thanks Ilene!!!
These last few days I've been reestablishing contact with many of my co-Sclero partners. I am gathering more info on their conditions and how they have been coping with their lives since last we spoke. I hope to be able to share some of this soon.
Thank you all for your contributions to this mental health session...
posted by DesktopDavid at 9:09 AM
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