Sometimes, in life, we can’t resolve one issue unless and until we resolve another. And in families, those issues can be very complicated. And quite wily
And when the ‘identified patient’ dies, they take more with them then the good and bad about themselves and how they fit into the family structure. If left to atrophy or if forgotten, the issues that surrounded them will keep popping up in one form or another. If, for instance, that person was needy, dependent and ill (in addition to be kind, warm and giving) and the subsequent stress on the family was never addressed, that experience will play out in the family again and again in some way until it is resolved.
The stress of having an ill family member is overwhelming in the best of situations. When communication breaks down, as it often does in life, that stress is indeed potent. And NF1, which can range from mild to savage, is an unforgivable disorder. Unforgivable for the patient as well as the family, something I’ve been writing about for years.
Misunderstood in ways that cannot be described, NF1 is at once sneaky and outspoken. Learning disabilities can make us feel and appear stupid, but other skills, if developed, can make us feel and appear normal. Pain from tumors can be teeth-rattling, and at other times, even at a ‘6’ on the 1-10 scale, bearable (it varies is because the tumors are malleable and move on and off nerves. Also, hormone levels affect growth). It’s enough to drive the afflicted person crazy, as they constantly question themselves and the validity of their disorder.
We all handle it differently, but most of us just handle it differently at different times. When pain is involved and is overwhelming, making moving about in the world difficult, we must decide how much we reveal to people. And then there are times when we can move about. It’s confusing, dangerous territory for everyone.
And most especially if the history in the family is one of having a sick family member. We always feel as though we are being compared, whether or not it is true. If we talk about our illness too much, we feel we are complaining when we could be stronger. If we don’t say anything, we feel like martyrs or liars.
If we think we might need a little bit more help, we fear the family will take over, put us away when we still are capable of many things. If we keep quiet, we risk injury or again, feel the martyr.
No matter how independent we have been, if money is involved (family has it, we don’t) we feel shamed, empty, worthless. And that’s regardless how much we give back in other ways. It’s a societal thing. If you are wealthy, you have the answers, if you aren’t, you don’t even know the right questions, regardless of how much you have solved on your own before and after illness took over.
Then there is the guilt of being responsible for this mess. Mostly, this is what we do to ourselves. But sometimes, the shame, blaming and guilt come from issues that have never been resolved. Though it might not be a conscious thought, if unresolved, it is there at some level. Those that deny they are thinking about you in the same way they did the other family member just haven’t made that connection.
We, as human beings, can be quite crazy. We tend to tune out those who have a hard time expressing themselves, even though they may just have something important to say. It’s just too hard to listen. We tend to tune out those who are ill, even when it’s legitimate, even when they aren’t complaining. Patience is at times, hard to come by.
But fear is always in abundance. And looking at an ill person brings up lots of primal fear. We are mortal, and that’s scary. We know of death, yes. Most everyone knows someone who has died. Lots of us have watched, or been with, someone who has died. But very few of us are faced with it day after day. Even if our NF isn’t killing us at the moment, our body and it’s many challenges, reminds us how close it really is.
And sometimes, it’s far worse to be very ill and not dying.
We can have our NF and our families. But we need to be aware of those long ago issues if we want quality. Probably, it’s just good people going through a bad time. So if you need a break to keep the relationship intact, take one. For however long you need.
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And when the ‘identified patient’ dies, they take more with them then the good and bad about themselves and how they fit into the family structure. If left to atrophy or if forgotten, the issues that surrounded them will keep popping up in one form or another. If, for instance, that person was needy, dependent and ill (in addition to be kind, warm and giving) and the subsequent stress on the family was never addressed, that experience will play out in the family again and again in some way until it is resolved.
The stress of having an ill family member is overwhelming in the best of situations. When communication breaks down, as it often does in life, that stress is indeed potent. And NF1, which can range from mild to savage, is an unforgivable disorder. Unforgivable for the patient as well as the family, something I’ve been writing about for years.
Misunderstood in ways that cannot be described, NF1 is at once sneaky and outspoken. Learning disabilities can make us feel and appear stupid, but other skills, if developed, can make us feel and appear normal. Pain from tumors can be teeth-rattling, and at other times, even at a ‘6’ on the 1-10 scale, bearable (it varies is because the tumors are malleable and move on and off nerves. Also, hormone levels affect growth). It’s enough to drive the afflicted person crazy, as they constantly question themselves and the validity of their disorder.
We all handle it differently, but most of us just handle it differently at different times. When pain is involved and is overwhelming, making moving about in the world difficult, we must decide how much we reveal to people. And then there are times when we can move about. It’s confusing, dangerous territory for everyone.
And most especially if the history in the family is one of having a sick family member. We always feel as though we are being compared, whether or not it is true. If we talk about our illness too much, we feel we are complaining when we could be stronger. If we don’t say anything, we feel like martyrs or liars.
If we think we might need a little bit more help, we fear the family will take over, put us away when we still are capable of many things. If we keep quiet, we risk injury or again, feel the martyr.
No matter how independent we have been, if money is involved (family has it, we don’t) we feel shamed, empty, worthless. And that’s regardless how much we give back in other ways. It’s a societal thing. If you are wealthy, you have the answers, if you aren’t, you don’t even know the right questions, regardless of how much you have solved on your own before and after illness took over.
Then there is the guilt of being responsible for this mess. Mostly, this is what we do to ourselves. But sometimes, the shame, blaming and guilt come from issues that have never been resolved. Though it might not be a conscious thought, if unresolved, it is there at some level. Those that deny they are thinking about you in the same way they did the other family member just haven’t made that connection.
We, as human beings, can be quite crazy. We tend to tune out those who have a hard time expressing themselves, even though they may just have something important to say. It’s just too hard to listen. We tend to tune out those who are ill, even when it’s legitimate, even when they aren’t complaining. Patience is at times, hard to come by.
But fear is always in abundance. And looking at an ill person brings up lots of primal fear. We are mortal, and that’s scary. We know of death, yes. Most everyone knows someone who has died. Lots of us have watched, or been with, someone who has died. But very few of us are faced with it day after day. Even if our NF isn’t killing us at the moment, our body and it’s many challenges, reminds us how close it really is.
And sometimes, it’s far worse to be very ill and not dying.
We can have our NF and our families. But we need to be aware of those long ago issues if we want quality. Probably, it’s just good people going through a bad time. So if you need a break to keep the relationship intact, take one. For however long you need.