Walking Away
Severe ME :
It seems too complicated, too much effort, too bizarre.
It is unbelievable, it is not possible to comprehend, empathise with or even recognise the degree of suffering because it is so vastly out of reach of the ordinary person's experience or interest even.
How do you stay in touch meaningfully with a person who cannot bear your physical presence or converse in two way conversation, who is allergic to your perfume on your body and your clothes, who cannot tolerate physical contact because of touch, pressure sensitivity and intense indescribable levels of pain?
Who lives in darkened spaces, wears dark glasses indoors and cannot bear the ordinary light of day?
How do you convey your inner reality, the complete emptiness of your thought,your inability to answer questions because you simply cannot find the words or the images in your mind?
How do you explain that the simplest noise, a cough, a laugh too loud, a certain tone of voice, a phone ringing or a movement or quick gesture might trigger total body paralysis, feet, legs, arms, hands, fingers, back muscles, face, mouth, eyes, increase numbness, cause partial or total shaking muscle spasms and a host of other worsening invisible symptoms that go on long after the person has gone away ?
How do people know you still care, you are still interested, you think of them every day, perhaps, but you simply have no safe way of engaging with their presence?
How do they keep caring?
How do they keep interested in your empty tortured life?
How do they keep in touch?
How much easier it is to walk away or get angry or blame or not understand? How sad that they cannot or will not make the necessary changes, the effort needed, will not convey they want to really know or at least try to comprehend the nightmare reality of living with very Severe ME.
They will not try in the right moment, in the right way, to engage or reach out in love.
Because it is not enough to just be ordinary, in the face of such suffering. They have to engage more fully in the how to relate. Ordinary conversation, communication, interaction is unrealistic and dangerous. But how impossibly difficult is that to convey?
How terribly sad it is, that with such need to protect the immediate environment, for the person to remain safe, so few comprehend the danger they pose and are willing to give the utmost commitment to maintain it.
How much easier it is to ignore the truth or just think you are being difficult or exaggerating or even playing some kind of game?
How lonely that feels.
How terrible that the most ill are left in this state of blame or ignored or misinterpreted or just simply excluded and forgotten in the decades of suffering.
Their unrecognised, untreated, unsupported, clinically dismissed, abandoned physical disease renders them completely invisible and alienated from the people they once knew and the life they once lived by.
Living in torment with no real idea of what to do or how to cope moment by moment by moment.
It seems too complicated, too much effort, too bizarre.
It is unbelievable, it is not possible to comprehend, empathise with or even recognise the degree of suffering because it is so vastly out of reach of the ordinary person's experience or interest even.
How do you stay in touch meaningfully with a person who cannot bear your physical presence or converse in two way conversation, who is allergic to your perfume on your body and your clothes, who cannot tolerate physical contact because of touch, pressure sensitivity and intense indescribable levels of pain?
Who lives in darkened spaces, wears dark glasses indoors and cannot bear the ordinary light of day?
How do you convey your inner reality, the complete emptiness of your thought,your inability to answer questions because you simply cannot find the words or the images in your mind?
How do you explain that the simplest noise, a cough, a laugh too loud, a certain tone of voice, a phone ringing or a movement or quick gesture might trigger total body paralysis, feet, legs, arms, hands, fingers, back muscles, face, mouth, eyes, increase numbness, cause partial or total shaking muscle spasms and a host of other worsening invisible symptoms that go on long after the person has gone away ?
How do people know you still care, you are still interested, you think of them every day, perhaps, but you simply have no safe way of engaging with their presence?
How do they keep caring?
How do they keep interested in your empty tortured life?
How do they keep in touch?
How much easier it is to walk away or get angry or blame or not understand? How sad that they cannot or will not make the necessary changes, the effort needed, will not convey they want to really know or at least try to comprehend the nightmare reality of living with very Severe ME.
They will not try in the right moment, in the right way, to engage or reach out in love.
Because it is not enough to just be ordinary, in the face of such suffering. They have to engage more fully in the how to relate. Ordinary conversation, communication, interaction is unrealistic and dangerous. But how impossibly difficult is that to convey?
How terribly sad it is, that with such need to protect the immediate environment, for the person to remain safe, so few comprehend the danger they pose and are willing to give the utmost commitment to maintain it.
How much easier it is to ignore the truth or just think you are being difficult or exaggerating or even playing some kind of game?
How lonely that feels.
How terrible that the most ill are left in this state of blame or ignored or misinterpreted or just simply excluded and forgotten in the decades of suffering.
Their unrecognised, untreated, unsupported, clinically dismissed, abandoned physical disease renders them completely invisible and alienated from the people they once knew and the life they once lived by.
Living in torment with no real idea of what to do or how to cope moment by moment by moment.
One way that I do stay in touch in that situation, is to do it online. Of course, that requires setting the device on the lowest light level, then downloading an app that sets it to an even lower light level, and the device is generally used while my favorite person with M.E. sits in a darkened room with a blanket over her head (well, actually more like five blankets. She does get cold.). And, I do have to purchase new earphones for my favorite person with M.E. practically daily, because they are used nearly 24 hours a day. But it's one way to reach out and touch the world, and for the world to touch back. I don't think I have every met anyone that I could explain it to, who hadn't actually lived with it. I wonder what people did before they had the internet.
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