Top ten things to never say to someone with multiple sclerosis

Source: tedlillyfanclub 

10. Smug person: “Are you sure it’s not just all in your head?”

MSer: “Of course it is all in my head! And a bit in my c-spine too. Sit down. Let me show my MRI.”

9. Shallow person: “That’s not MS. That’s old age.”

MSer: “So for some strange reason I have just aged thirty years in five seconds. I feel so much better now.”

8. Helpful person: “You should look into (insert list of wildly bizarre alternative remedies here).”

MSer: “Thing is, I am a little overwhelmed right now and that is about the tenth suggestion I have received just in the last hour on things to look into that might or might not be helpful. How about you look into it and get back to me, okay? Great, thanks.”

7. Clueless person: “Oh, that’s nothing. I get that all the time.”

MSer: “Really? Nothing? Damn, I have been shooting myself up with drugs made from Chinese hamster ovary cells for the fun of it. Think I am making that up? Get a magnifying glass and check out a box of interferon injections.”

6. Conceited, self-centered person: “You’re tired? I’m really tired, too.”

MSer: “Tired huh? Last night I started sobbing at the idea of brushing my teeth as my arm was too exhausted to lift the tube of toothpaste. Are you THAT tired?”

5. Ignorant person: “You could die from this, you know?”

MSer: “Dammit it! I thought this meant I was going to live forever. Geez!”

4. Optimistic person: “But you don’t look sick to me.”

MSer: “That’s wonderful news. Could you call my doctor and let her know? Maybe she got it all wrong.”

3. Sarcastic person: “You can’t just blame MS for everything.”

MSer: “Watch me!”

2. Curious person: “Isn’t that what Michael J. Fox has?”

MSer: “No, this is the disease that Montel Williams has. You know, the disease where he wrote that book and said it was OK to smoke pot. Got any on you?”

1. Opportunistic person: “How do you get one of those handicapped parking thingies anyway?”

MSer: “You’ve got to go see my buddy Vinnie down at the RMV. He hands them out for fifty dollars and a subscription to the beer of the month club. Here, let me give you his number.”

~ Yvonne deSousa

Top ten things to never say to someone with multiple sclerosis

Source: tedlillyfanclub 

10. Smug person: “Are you sure it’s not just all in your head?”

MSer: “Of course it is all in my head! And a bit in my c-spine too. Sit down. Let me show my MRI.”

9. Shallow person: “That’s not MS. That’s old age.”

MSer: “So for some strange reason I have just aged thirty years in five seconds. I feel so much better now.”

8. Helpful person: “You should look into (insert list of wildly bizarre alternative remedies here).”

MSer: “Thing is, I am a little overwhelmed right now and that is about the tenth suggestion I have received just in the last hour on things to look into that might or might not be helpful. How about you look into it and get back to me, okay? Great, thanks.”

7. Clueless person: “Oh, that’s nothing. I get that all the time.”

MSer: “Really? Nothing? Damn, I have been shooting myself up with drugs made from Chinese hamster ovary cells for the fun of it. Think I am making that up? Get a magnifying glass and check out a box of interferon injections.”

6. Conceited, self-centered person: “You’re tired? I’m really tired, too.”

MSer: “Tired huh? Last night I started sobbing at the idea of brushing my teeth as my arm was too exhausted to lift the tube of toothpaste. Are you THAT tired?”

5. Ignorant person: “You could die from this, you know?”

MSer: “Dammit it! I thought this meant I was going to live forever. Geez!”

4. Optimistic person: “But you don’t look sick to me.”

MSer: “That’s wonderful news. Could you call my doctor and let her know? Maybe she got it all wrong.”

3. Sarcastic person: “You can’t just blame MS for everything.”

MSer: “Watch me!”

2. Curious person: “Isn’t that what Michael J. Fox has?”

MSer: “No, this is the disease that Montel Williams has. You know, the disease where he wrote that book and said it was OK to smoke pot. Got any on you?”

1. Opportunistic person: “How do you get one of those handicapped parking thingies anyway?”

MSer: “You’ve got to go see my buddy Vinnie down at the RMV. He hands them out for fifty dollars and a subscription to the beer of the month club. Here, let me give you his number.”

~ Yvonne deSousa

Illness

Source: Favim

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

~ Susan Sontag

Illness

Source: Favim

Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

~ Susan Sontag

Having it Out with Melancholy

Source: Unknown/Favim

If many remedies are prescribed for an illness, you may be certain that the illness has no cure.
A. P. CHEKHOV, The Cherry Orchard

I FROM THE NURSERY

When I was born, you waited
behind a pile of linen in the nursery,
and when we were alone, you lay down
on top of me, pressing
the bile of desolation into every pore.

And from that day on
everything under the sun and moon
made me sad -- even the yellow
wooden beads that slid and spun
along a spindle on my crib.

You taught me to exist without gratitude.
You ruined my manners toward God:
"We're here simply to wait for death;
the pleasures of earth are overrated."

I only appeared to belong to my mother,
to live among blocks and cotton undershirts
with snaps; among red tin lunch boxes
and report cards in ugly brown slipcases.
I was already yours -- the anti-urge,
the mutilator of souls.

2 BOTTLES

Elavil, Ludiomil, Doxepin,
Norpramin, Prozac, Lithium, Xanax,
Wellbutrin, Parnate, Nardil, Zoloft.
The coated ones smell sweet or have
no smell; the powdery ones smell
like the chemistry lab at school
that made me hold my breath.

3 SUGGESTION FROM A FRIEND

You wouldn't be so depressed
if you really believed in God.

4 OFTEN

Often I go to bed as soon after dinner
as seems adult
(I mean I try to wait for dark)
in order to push away
from the massive pain in sleep's
frail wicker coracle.

5 ONCE THERE WAS LIGHT

Once, in my early thirties, I saw
that I was a speck of light in the great
river of light that undulates through time.

I was floating with the whole
human family. We were all colors -- those
who are living now, those who have died,
those who are not yet born. For a few

moments I floated, completely calm,
and I no longer hated having to exist.

Like a crow who smells hot blood
you came flying to pull me out
of the glowing stream.
"I'll hold you up. I never let my dear
ones drown!" After that, I wept for days.

6 IN AND OUT

The dog searches until he finds me
upstairs, lies down with a clatter
of elbows, puts his head on my foot.

Sometimes the sound of his breathing
saves my life -- in and out, in
and out; a pause, a long sigh. . . .

7 PARDON

A piece of burned meat
wears my clothes, speaks
in my voice, dispatches obligations
haltingly, or not at all.
It is tired of trying
to be stouthearted, tired
beyond measure.

We move on to the monoamine
oxidase inhibitors. Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.

8 CREDO

Pharmaceutical wonders are at work
but I believe only in this moment
of well-being. Unholy ghost,
you are certain to come again.

Coarse, mean, you'll put your feet
on the coffee table, lean back,
and turn me into someone who can't
take the trouble to speak; someone
who can't sleep, or who does nothing
but sleep; can't read, or call
for an appointment for help.

There is nothing I can do
against your coming.
When I awake, I am still with thee.

9 WOOD THRUSH

High on Nardil and June light
I wake at four,
waiting greedily for the first
note of the wood thrush. Easeful air
presses through the screen
with the wild, complex song
of the bird, and I am overcome

by ordinary contentment.
What hurt me so terribly
all my life until this moment?
How I love the small, swiftly
beating heart of the bird
singing in the great maples;
its bright, unequivocal eye.

~ Jane Kenyon

Having it Out with Melancholy

Source: Unknown/Favim

If many remedies are prescribed for an illness, you may be certain that the illness has no cure.
A. P. CHEKHOV, The Cherry Orchard

I FROM THE NURSERY

When I was born, you waited
behind a pile of linen in the nursery,
and when we were alone, you lay down
on top of me, pressing
the bile of desolation into every pore.

And from that day on
everything under the sun and moon
made me sad -- even the yellow
wooden beads that slid and spun
along a spindle on my crib.

You taught me to exist without gratitude.
You ruined my manners toward God:
"We're here simply to wait for death;
the pleasures of earth are overrated."

I only appeared to belong to my mother,
to live among blocks and cotton undershirts
with snaps; among red tin lunch boxes
and report cards in ugly brown slipcases.
I was already yours -- the anti-urge,
the mutilator of souls.

2 BOTTLES

Elavil, Ludiomil, Doxepin,
Norpramin, Prozac, Lithium, Xanax,
Wellbutrin, Parnate, Nardil, Zoloft.
The coated ones smell sweet or have
no smell; the powdery ones smell
like the chemistry lab at school
that made me hold my breath.

3 SUGGESTION FROM A FRIEND

You wouldn't be so depressed
if you really believed in God.

4 OFTEN

Often I go to bed as soon after dinner
as seems adult
(I mean I try to wait for dark)
in order to push away
from the massive pain in sleep's
frail wicker coracle.

5 ONCE THERE WAS LIGHT

Once, in my early thirties, I saw
that I was a speck of light in the great
river of light that undulates through time.

I was floating with the whole
human family. We were all colors -- those
who are living now, those who have died,
those who are not yet born. For a few

moments I floated, completely calm,
and I no longer hated having to exist.

Like a crow who smells hot blood
you came flying to pull me out
of the glowing stream.
"I'll hold you up. I never let my dear
ones drown!" After that, I wept for days.

6 IN AND OUT

The dog searches until he finds me
upstairs, lies down with a clatter
of elbows, puts his head on my foot.

Sometimes the sound of his breathing
saves my life -- in and out, in
and out; a pause, a long sigh. . . .

7 PARDON

A piece of burned meat
wears my clothes, speaks
in my voice, dispatches obligations
haltingly, or not at all.
It is tired of trying
to be stouthearted, tired
beyond measure.

We move on to the monoamine
oxidase inhibitors. Day and night
I feel as if I had drunk six cups
of coffee, but the pain stops
abruptly. With the wonder
and bitterness of someone pardoned
for a crime she did not commit
I come back to marriage and friends,
to pink fringed hollyhocks; come back
to my desk, books, and chair.

8 CREDO

Pharmaceutical wonders are at work
but I believe only in this moment
of well-being. Unholy ghost,
you are certain to come again.

Coarse, mean, you'll put your feet
on the coffee table, lean back,
and turn me into someone who can't
take the trouble to speak; someone
who can't sleep, or who does nothing
but sleep; can't read, or call
for an appointment for help.

There is nothing I can do
against your coming.
When I awake, I am still with thee.

9 WOOD THRUSH

High on Nardil and June light
I wake at four,
waiting greedily for the first
note of the wood thrush. Easeful air
presses through the screen
with the wild, complex song
of the bird, and I am overcome

by ordinary contentment.
What hurt me so terribly
all my life until this moment?
How I love the small, swiftly
beating heart of the bird
singing in the great maples;
its bright, unequivocal eye.

~ Jane Kenyon

Quote on illness

Source: Unknown/Favim

Defects, disorders, diseases … can play a paradoxical role, by bringing out latent powers, developments, evolutions, forms of life, that might never be seen, or even be imaginable, in their absence. …Thus while one may be horrified by the ravages of developmental disorder or disease, one may sometimes see them as creative too — for if they destroy particular paths, particular ways of doing things, they may force on it an unexpected growth and evolution.

~Oliver Sacks

Quote on illness

Source: Unknown/Favim

Defects, disorders, diseases … can play a paradoxical role, by bringing out latent powers, developments, evolutions, forms of life, that might never be seen, or even be imaginable, in their absence. …Thus while one may be horrified by the ravages of developmental disorder or disease, one may sometimes see them as creative too — for if they destroy particular paths, particular ways of doing things, they may force on it an unexpected growth and evolution.

~Oliver Sacks

Quote on mental illness

Credit: Lana

The real hopeless victims of mental illness are to be found among those who appear to be most normal. "Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does." They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness. These millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted.

~ Aldous Huxley

Quote on mental illness

Credit: Lana

The real hopeless victims of mental illness are to be found among those who appear to be most normal. "Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does." They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness. These millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted.

~ Aldous Huxley

Quote on different perspectives on illness

Image: Phaitoon / FreeDigitalPhotos.net

1. Christian—The fundamentalist message: Illness is basically a punishment from God for some sort of sin. The worse the illness, the more unspeakable the sin.

2. New Age—Illness is a lesson. You are giving yourself this disease because there is something important you have to learn from it in order to continue your spiritual growth and evolution. Mind alone causes illness and mind alone can cure it. A yuppified post-modern version of Christian Science.

3. Medical—Illness is fundamentally a biophysical disorder, caused by biophysical factors (from viruses to trauma to genetic predisposition to triggering agent). You needn't worry about psychological or spiritual treatment for most illnesses because such alternative treatments are usually ineffectual and may actually prevent you from getting the proper medical attention.

4. Karma—Illness is the result of negative karma; that is, some non-virtuous past actions are now coming to fruition in the form of a disease. The disease is "bad" in the sense that it represents past nonvirtue; but "good" in the sense that the disease process itself represents the burning up and the purifying of the past misdeed; it's a purgation, a cleansing.

5. Psychological—As Woody Allen put it, "I don't get angry, I grow tumors instead." The idea is that, at least in pop psychology, repressed emotions cause illness. The extreme form: illness is a death wish.

6. Gnostic—Illness is an illusion. The entire manifest universe is a dream, a shadow, and one is free of illness only when one is free from illusory manifestation altogether, only when one awakens from the dream and discovers instead the one reality beyond the manifest universe. Spirit is the only reality, and in Spirit there is no illness. An extreme and somewhat off-centered version of mysticism.

7. Existential—Illness itself is without meaning. Accordingly, it can take any meaning I choose to give it, and I am solely responsible for these choices. Men and women are finite and mortal, and the authentic response is to accept illness as part of one's finitude even while imbuing it with personal meaning.

8. Holistic—Illness is a product of physical, emotional, mental, and spiritual factors, none of which can be isolated from the others, none of which can be ignored. Treatment must involve all of these dimensions (although in practice this often translates into an eschewal of orthodox treatments, even when they might help).

9. Magical—Illness is retribution. "I deserve this because I wished So-and-so would die" Or, "I better not excel too much, something bad will happen to me." And so on.

10. Buddhist—Illness is an inescapable part of the manifest world; asking why there illness is like asking why there is air. Birth, old age, sickness, and death-- these are the marks of this world, all of whose phenomena are characterized by impermanence, suffering, and selflessness. Only enlightenment, in the pure awareness of nirvana, is illness finally transcended, because then the entire phenomenal world is transcended as well.

11. Scientific—Whatever the illness is, it has a specific cause or cluster of causes. Some of these causes are determined, others are simply random or due to pure chance. Either way, there is no "meaning " to illness, there is only chance or necessity.

~ Ken Wilber

Quote on different perspectives on illness

Image: Phaitoon / FreeDigitalPhotos.net

1. Christian—The fundamentalist message: Illness is basically a punishment from God for some sort of sin. The worse the illness, the more unspeakable the sin.

2. New Age—Illness is a lesson. You are giving yourself this disease because there is something important you have to learn from it in order to continue your spiritual growth and evolution. Mind alone causes illness and mind alone can cure it. A yuppified post-modern version of Christian Science.

3. Medical—Illness is fundamentally a biophysical disorder, caused by biophysical factors (from viruses to trauma to genetic predisposition to triggering agent). You needn't worry about psychological or spiritual treatment for most illnesses because such alternative treatments are usually ineffectual and may actually prevent you from getting the proper medical attention.

4. Karma—Illness is the result of negative karma; that is, some non-virtuous past actions are now coming to fruition in the form of a disease. The disease is "bad" in the sense that it represents past nonvirtue; but "good" in the sense that the disease process itself represents the burning up and the purifying of the past misdeed; it's a purgation, a cleansing.

5. Psychological—As Woody Allen put it, "I don't get angry, I grow tumors instead." The idea is that, at least in pop psychology, repressed emotions cause illness. The extreme form: illness is a death wish.

6. Gnostic—Illness is an illusion. The entire manifest universe is a dream, a shadow, and one is free of illness only when one is free from illusory manifestation altogether, only when one awakens from the dream and discovers instead the one reality beyond the manifest universe. Spirit is the only reality, and in Spirit there is no illness. An extreme and somewhat off-centered version of mysticism.

7. Existential—Illness itself is without meaning. Accordingly, it can take any meaning I choose to give it, and I am solely responsible for these choices. Men and women are finite and mortal, and the authentic response is to accept illness as part of one's finitude even while imbuing it with personal meaning.

8. Holistic—Illness is a product of physical, emotional, mental, and spiritual factors, none of which can be isolated from the others, none of which can be ignored. Treatment must involve all of these dimensions (although in practice this often translates into an eschewal of orthodox treatments, even when they might help).

9. Magical—Illness is retribution. "I deserve this because I wished So-and-so would die" Or, "I better not excel too much, something bad will happen to me." And so on.

10. Buddhist—Illness is an inescapable part of the manifest world; asking why there illness is like asking why there is air. Birth, old age, sickness, and death-- these are the marks of this world, all of whose phenomena are characterized by impermanence, suffering, and selflessness. Only enlightenment, in the pure awareness of nirvana, is illness finally transcended, because then the entire phenomenal world is transcended as well.

11. Scientific—Whatever the illness is, it has a specific cause or cluster of causes. Some of these causes are determined, others are simply random or due to pure chance. Either way, there is no "meaning " to illness, there is only chance or necessity.

~ Ken Wilber

Quote on illness

Photo credit: penywise from morguefile.com

If a culture treats a particular illness with compassion and enlightened understanding, then sickness can be seen as a challenge, as a healing crisis and opportunity. Being sick is then not a condemnation or a moral judgment, but a movement in a larger process of healing and restoration. When sickness is viewed positively and in supportive terms, then illness has a much better chance to heal, with the concomitant result that the entire person may grow and be enriched in the process.

~ Ken Wilber

Quote on illness

Photo credit: penywise from morguefile.com

If a culture treats a particular illness with compassion and enlightened understanding, then sickness can be seen as a challenge, as a healing crisis and opportunity. Being sick is then not a condemnation or a moral judgment, but a movement in a larger process of healing and restoration. When sickness is viewed positively and in supportive terms, then illness has a much better chance to heal, with the concomitant result that the entire person may grow and be enriched in the process.

~ Ken Wilber

Patient Histories

Image: FreeDigitalPhotos.net

Some know what ails them inside and out.

They know where they brushed the ivy, and when,

Tracing for you around their shins

The border that morning between sock and skin.

After resenting their past doctors by name,

They ask you to spell yours, and write

The letters, as you say them, on a yellow pad.

Medication lists, xeroxed, one for you to keep.

They know exactly at what hour of the night

Their pain gave a murmur, or turned in its sleep.

But some speak of their ill health haltingly,

The first chest pressure something overheard

Across a room packed with more pressing events.

A spouse brings the mole to their attention.

When they first slurred their words is a matter of hearsay;

They have no dates for you, much less a time of day.

And they are always the ones who get

The worst news, whose malignancies have trekked

To lung and liver in the sunshine of benign neglect,

The men whose backaches prove bone mets, the women

Who felt the lump but figured it would go away.

~ Amit Majmudar

Patient Histories

Image: FreeDigitalPhotos.net

Some know what ails them inside and out.

They know where they brushed the ivy, and when,

Tracing for you around their shins

The border that morning between sock and skin.

After resenting their past doctors by name,

They ask you to spell yours, and write

The letters, as you say them, on a yellow pad.

Medication lists, xeroxed, one for you to keep.

They know exactly at what hour of the night

Their pain gave a murmur, or turned in its sleep.

But some speak of their ill health haltingly,

The first chest pressure something overheard

Across a room packed with more pressing events.

A spouse brings the mole to their attention.

When they first slurred their words is a matter of hearsay;

They have no dates for you, much less a time of day.

And they are always the ones who get

The worst news, whose malignancies have trekked

To lung and liver in the sunshine of benign neglect,

The men whose backaches prove bone mets, the women

Who felt the lump but figured it would go away.

~ Amit Majmudar