Amy Susan Crohn's Blog, page 2
March 5, 2015
Joy to the world...
Can we make joy happen? During these snowy, dark, depressing days of winter, can we will it to be? Those of us who are chronically ill and hampered by the weather and its unpredictability (sorry weather forecasters) just seem to drop down, down, down beside each snowflake, next to one another in homes where we can not see.
So we take joy in the 'little things' like playing with the dog, or a television series marathon, music, or a good home-cooked meal. But there is something missing to jolt us up and out of bed; to struggle with the day because we have to take care of ourselves.
Wake up. Check.Feel for aches and pains. Check. Take pre-breakfast meds. Check.Make specially-approved breakfast for condition. Check. Look at calendar to see if you have any appointments or conference calls. Check. Sit down at desk to work. Check. Leave desk two or three times to remediate annoying side effects of meds. Check.Think about walking through the snow to the gym. Check. Worry about falling on ice like last week. ... and so on and on until darkness falls and you are tired from the routineness of yet another 'wintry mix' day.
If you have Lupus, fibromyalgia, Raynaud's Disease or any other of the thousands of auto-immune disorders, cold and wet is not your friend. You long for the rays of hot sun and, even, the humidity. Air conditioning just recreates winter for you so in spring and summer, you spend a lot of time outdoors and there is joy in the seasons. It's an easier joy for me to capture.
Researchers write about SAD or Seasonal Affective Disorder. I wonder if it's a real thing or just something we all go through. Mayo Clinic says: "SAD is a type of depression that's related to changes in seasons. SAD begins and ends at about the same times every year. If you're like most people with SAD, your symptoms start in the fall and continue into the winter months, sapping your energy and making you feel moody. Less often, SAD causes depression in the spring or early summer."
I don't think I have SAD. I've just got the winter weather blues like a lot of us.
Yet others love the cold, snowy weather! They revel in skiing, sledding and snowmen, They hike through icy and snow-laden woods. I remember those days. I was five-years-old.
Because he was a New York City firefighter through many winters, my husband suffers frostbite on some of his fingers. I watch as a good part of his hand turns white when he doesn't wear gloves. I can't imagine him covered in water and icicles all those winters ago.
Today, our first responders and Department of Public Works staff do the same, braving all sorts of weather to reach tragedies or traumas. And we say to ourselves: "I'm glad it wasn't me."
I'm blessed. I can work from home and tend to my illnesses and my family. I have nothing to complain about. But I remember traveling to and from work in these awful weather days. Climbing over mountains of snow and cleaning off my car too many times to count. My trusty 1969 VW Bug with a 1973 engine that I owned in the early 1980s could be completely covered in snow but would start up reliably. It had no heat because the floorboards had rotted out, as those of you with old Volkwagen Bugs will recall, but your hands could easily act as windshield wipers if they failed because of how close you were sitting to the windshield.
I miss that car. That car alone was joyful. It's beep was happy. It could also climb through snow like a mountain goat because the engine was in its rear. Go figure that it's today's SUVs that are slipping and sliding all over the place. I also miss cutting a hole in a trash bag and slipping it over my head as a helluva a sled to throw myself down a hill.
If I can recapture those feelings, I can have joy every day no matter the weather or time zone. I just did.
So we take joy in the 'little things' like playing with the dog, or a television series marathon, music, or a good home-cooked meal. But there is something missing to jolt us up and out of bed; to struggle with the day because we have to take care of ourselves.
Wake up. Check.Feel for aches and pains. Check. Take pre-breakfast meds. Check.Make specially-approved breakfast for condition. Check. Look at calendar to see if you have any appointments or conference calls. Check. Sit down at desk to work. Check. Leave desk two or three times to remediate annoying side effects of meds. Check.Think about walking through the snow to the gym. Check. Worry about falling on ice like last week. ... and so on and on until darkness falls and you are tired from the routineness of yet another 'wintry mix' day.
If you have Lupus, fibromyalgia, Raynaud's Disease or any other of the thousands of auto-immune disorders, cold and wet is not your friend. You long for the rays of hot sun and, even, the humidity. Air conditioning just recreates winter for you so in spring and summer, you spend a lot of time outdoors and there is joy in the seasons. It's an easier joy for me to capture.
Researchers write about SAD or Seasonal Affective Disorder. I wonder if it's a real thing or just something we all go through. Mayo Clinic says: "SAD is a type of depression that's related to changes in seasons. SAD begins and ends at about the same times every year. If you're like most people with SAD, your symptoms start in the fall and continue into the winter months, sapping your energy and making you feel moody. Less often, SAD causes depression in the spring or early summer."
I don't think I have SAD. I've just got the winter weather blues like a lot of us.
Yet others love the cold, snowy weather! They revel in skiing, sledding and snowmen, They hike through icy and snow-laden woods. I remember those days. I was five-years-old.
Because he was a New York City firefighter through many winters, my husband suffers frostbite on some of his fingers. I watch as a good part of his hand turns white when he doesn't wear gloves. I can't imagine him covered in water and icicles all those winters ago.
Today, our first responders and Department of Public Works staff do the same, braving all sorts of weather to reach tragedies or traumas. And we say to ourselves: "I'm glad it wasn't me."
I'm blessed. I can work from home and tend to my illnesses and my family. I have nothing to complain about. But I remember traveling to and from work in these awful weather days. Climbing over mountains of snow and cleaning off my car too many times to count. My trusty 1969 VW Bug with a 1973 engine that I owned in the early 1980s could be completely covered in snow but would start up reliably. It had no heat because the floorboards had rotted out, as those of you with old Volkwagen Bugs will recall, but your hands could easily act as windshield wipers if they failed because of how close you were sitting to the windshield.
I miss that car. That car alone was joyful. It's beep was happy. It could also climb through snow like a mountain goat because the engine was in its rear. Go figure that it's today's SUVs that are slipping and sliding all over the place. I also miss cutting a hole in a trash bag and slipping it over my head as a helluva a sled to throw myself down a hill.
If I can recapture those feelings, I can have joy every day no matter the weather or time zone. I just did.
February 18, 2015
Levity, brevity, clarity, wit...
Levity, brevity, clarity, wit. This phrase, coined by my brother, Steve Crohn, years ago, became our writers' motto since he was a writer and editor, too. In anything I write or say, I make sure I follow this credo because it works in business and in life. Truly!
Today, however, I am trying to get my doctors to adopt this approach. Wouldn't it be great if an appointment went something like this:
DOC (with direct eye contact): Good afternoon, Amy. What exactly is bothering you today?
ME: I can't digest food.
DOC: Is that before or after you've eaten it?
ME: After, of course. (I chuckle)
DOC (puts hand on my shoulder and smiles): Of course it's after. And how long has this problem been going on?
ME: Six months.
DOC: You mean you haven't pooped for six months?
ME: Sort of.
DOC: Do you also burp a lot?
ME: Yes.
DOC: So it's coming out one end but not the other?
ME: Yup.
DOC: Interesting (he sits down)
ME: What are possible diagnoses?
DOC: Hmmm. Perhaps it's the Gobloots like Lucy had in an episode of I Love Lucy. We will get to the bottom of it, pun intended. I don't want to unnecessarily cause you alarm when it's, most likely, a minor issue.
ME: Thank you, Doc. Do you know you look like Bradley Cooper and I want to kiss you?
(C'mon! We've all had at least one doctor like that? )
DOC: Sure. Come here.....(Hee hee)
The point is that the Doc is focused, not shuffling papers, not answering the phone, not distracted by what's going on outside the window, and is directly and clearly taking care of me with the four qualities I describe above.
He has levity or "lightness of mind, character, or behavior." (NOTE: This does not mean uninterested or uneducated. It means open-minded and acting with an open heart.)He's brief but to the point. He's clear and lucid "as to perception or understanding and his words are free from ambiguity."He's witty because his keen perception and cleverly apt expressions "make connections between ideas that can awaken pleasure." (Eye contact. Touching my shoulder. Ricky Ricardo. Not distracted and that kiss!)According to Lauren Block, a former Johns Hopkins University fellow in an article entitled 5 WAYS NEW DOCTORS FAIL AT BEDSIDE MANNER from a study conducted by the University: "It’s no wonder patients don’t feel connected to what we are telling them, because many times we are not doing as much as we could to make that connection.” The Johns Hopkins study also revealed that only 10 percent of patients can name a doctor who cared for them in the hospital.
Moreover, new doctors performed all five of the recommended behaviors like touch, eye contact and sitting down, during just four percent of all patient encounters. They were only slightly more likely to introduce themselves to patients during their first encounter than during a later one.
And good bedside manner has been proven to have a positive impact on patient health!
From a study at Massachusetts General Hospital, lead author and psychologist John Kelley says: "Our results show that the beneficial effects of a good patient-clinician relationship on health care outcomes are of similar magnitude to many well-established medical treatments." He added that "many of these medical treatments, while very important, need to balance their benefits against accompanying unwanted side effects. In contrast, there are no negative side effects to a good patient-clinician relationship."
NO NEGATIVE SIDE EFFECTS TO A GOOD PATIENT-CLINICIAN RELATIONSHIP. Hear that doctors?
The study goes on to say: The review found that relationship-focused training had a small but statistically significant effect on the specific health outcomes in patients with obesity, diabetes, asthma, or osteoarthritis. Among other things, it could affect weight loss, blood pressure, blood sugar and lipid levels, and pain. In fact, the researchers noted that the impact was greater than the reported effects of low-dose aspirin or cholesterol-lowering statins for preventing heart attack.
The researchers all say hospitals and training program officials can take simple steps to improve things, such as providing extra chairs and photos of the care team in patient rooms. They suggest adding lessons on etiquette-based communication to the curriculum. Really?
Needless to say, I am still Dying to Live and hope to follow 'doctor's orders' when they are delivered with levity, brevity, clarity and wit.
Marcus Welby where are you now? Never mind. I'll *ahem* take that kiss from Dr. Steven Kiley (a young James Brolin) instead.
Today, however, I am trying to get my doctors to adopt this approach. Wouldn't it be great if an appointment went something like this:
DOC (with direct eye contact): Good afternoon, Amy. What exactly is bothering you today?
ME: I can't digest food.
DOC: Is that before or after you've eaten it?
ME: After, of course. (I chuckle)
DOC (puts hand on my shoulder and smiles): Of course it's after. And how long has this problem been going on?
ME: Six months.
DOC: You mean you haven't pooped for six months?
ME: Sort of.
DOC: Do you also burp a lot?
ME: Yes.
DOC: So it's coming out one end but not the other?
ME: Yup.
DOC: Interesting (he sits down)
ME: What are possible diagnoses?
DOC: Hmmm. Perhaps it's the Gobloots like Lucy had in an episode of I Love Lucy. We will get to the bottom of it, pun intended. I don't want to unnecessarily cause you alarm when it's, most likely, a minor issue.
ME: Thank you, Doc. Do you know you look like Bradley Cooper and I want to kiss you?
(C'mon! We've all had at least one doctor like that? )
DOC: Sure. Come here.....(Hee hee)
The point is that the Doc is focused, not shuffling papers, not answering the phone, not distracted by what's going on outside the window, and is directly and clearly taking care of me with the four qualities I describe above.
He has levity or "lightness of mind, character, or behavior." (NOTE: This does not mean uninterested or uneducated. It means open-minded and acting with an open heart.)He's brief but to the point. He's clear and lucid "as to perception or understanding and his words are free from ambiguity."He's witty because his keen perception and cleverly apt expressions "make connections between ideas that can awaken pleasure." (Eye contact. Touching my shoulder. Ricky Ricardo. Not distracted and that kiss!)According to Lauren Block, a former Johns Hopkins University fellow in an article entitled 5 WAYS NEW DOCTORS FAIL AT BEDSIDE MANNER from a study conducted by the University: "It’s no wonder patients don’t feel connected to what we are telling them, because many times we are not doing as much as we could to make that connection.” The Johns Hopkins study also revealed that only 10 percent of patients can name a doctor who cared for them in the hospital.
Moreover, new doctors performed all five of the recommended behaviors like touch, eye contact and sitting down, during just four percent of all patient encounters. They were only slightly more likely to introduce themselves to patients during their first encounter than during a later one.
And good bedside manner has been proven to have a positive impact on patient health!
From a study at Massachusetts General Hospital, lead author and psychologist John Kelley says: "Our results show that the beneficial effects of a good patient-clinician relationship on health care outcomes are of similar magnitude to many well-established medical treatments." He added that "many of these medical treatments, while very important, need to balance their benefits against accompanying unwanted side effects. In contrast, there are no negative side effects to a good patient-clinician relationship."
NO NEGATIVE SIDE EFFECTS TO A GOOD PATIENT-CLINICIAN RELATIONSHIP. Hear that doctors?
The study goes on to say: The review found that relationship-focused training had a small but statistically significant effect on the specific health outcomes in patients with obesity, diabetes, asthma, or osteoarthritis. Among other things, it could affect weight loss, blood pressure, blood sugar and lipid levels, and pain. In fact, the researchers noted that the impact was greater than the reported effects of low-dose aspirin or cholesterol-lowering statins for preventing heart attack.
The researchers all say hospitals and training program officials can take simple steps to improve things, such as providing extra chairs and photos of the care team in patient rooms. They suggest adding lessons on etiquette-based communication to the curriculum. Really?
Needless to say, I am still Dying to Live and hope to follow 'doctor's orders' when they are delivered with levity, brevity, clarity and wit.
Marcus Welby where are you now? Never mind. I'll *ahem* take that kiss from Dr. Steven Kiley (a young James Brolin) instead.
February 6, 2015
Sick...ick!
Many of us have been ill this winter with colds, the flu, or stomach upset. I, however, have been fighting a complete flare up of gastroparesis - the paralysis of my digestive system. This is not a fun disease. It's maddening!
While I've managed it for nearly six years now with diet, medication for digestive motility, and laxatives (yeah, it ain't pretty), this latest bout came out of the blue - smacked me again in the back side of my head. I never expect it or see warning signs.
None of us with auto-immune disease are clairvoyant; that is, we can never predict when something is going to go awry in our bodies. So we get frustrated and isolated in our pain and distress. We triage ourselves to address the worst ailment first. When I had cancer, that came first and the diagnosis at the same time of Lupus came second even though it caused a lot of complications with my cancer treatment.
"I'm a professional patient," I tell the doctors and nurses in the emergency rooms that I frequent. I tell them what I need (pain meds, please!), what tests need to be run (xrays and/or CT scan), and then I'm given the option to be admitted or not. I usually choose not. This time around, perhaps I should have stayed.
Instead I took the treatments home (didn't work), made numerous calls to my gastroenterologist in New York City (because the local docs say my condition is beyond their area of expertise), adjusted meds and diet, and I am coasting along until invasive testing on Friday the 13th. Harrumph. I'm not superstitious, but really?
I know this is just one more hurdle to hurdle; one more setback from which I will recover. Nevertheless, there is always fear. Chronically ill folks live with fear all their lives - the not knowing is the worst of all. But, somehow, we overcome.
While I've managed it for nearly six years now with diet, medication for digestive motility, and laxatives (yeah, it ain't pretty), this latest bout came out of the blue - smacked me again in the back side of my head. I never expect it or see warning signs.
None of us with auto-immune disease are clairvoyant; that is, we can never predict when something is going to go awry in our bodies. So we get frustrated and isolated in our pain and distress. We triage ourselves to address the worst ailment first. When I had cancer, that came first and the diagnosis at the same time of Lupus came second even though it caused a lot of complications with my cancer treatment.
"I'm a professional patient," I tell the doctors and nurses in the emergency rooms that I frequent. I tell them what I need (pain meds, please!), what tests need to be run (xrays and/or CT scan), and then I'm given the option to be admitted or not. I usually choose not. This time around, perhaps I should have stayed.
Instead I took the treatments home (didn't work), made numerous calls to my gastroenterologist in New York City (because the local docs say my condition is beyond their area of expertise), adjusted meds and diet, and I am coasting along until invasive testing on Friday the 13th. Harrumph. I'm not superstitious, but really?
I know this is just one more hurdle to hurdle; one more setback from which I will recover. Nevertheless, there is always fear. Chronically ill folks live with fear all their lives - the not knowing is the worst of all. But, somehow, we overcome.
January 9, 2015
Courage...
If it could only be as easy as a wish for courage like The Cowardly Lion in The Wizard of Oz, we - like he - would all recognize our inner strength and latch onto it for dear life.
But it's not that simple, is it? For some of us, due to chronic illness, PTSD, depression, or other physical or mental ailments, finding the courage to go forward is a daily battle. For others, they choose to end their suffering by completing suicide.
This month, I am honored to be working with Scudder Intervention Services Foundation, Inc. (SISFI) on their Suicide Awareness and Prevention Tour in New York City, Long Island and Westchester County, NY. While I relied on SISFI for support myself after my brother's suicide almost a year-and-a-half ago, I was shocked to learn that during their September tour they interrupted 192 attempted suicides! That's something else!!
The difference with SISFI's 'troops' is that they are truly 'boots on the ground;' that is, they go to the person in crisis rather than referring them to an agency that may only be open Monday to Friday, 9am to 5pm. At any hour of the day or night, SISFI volunteers are available to personally talk to and/or visit individuals in crisis.
As Mr. Brett A. Scudder, SISFI president says: "“It is imperative that our communities rally together to be educated and aware of the mindset of someone suffering with emotional distress and the early warning signs to intervene and prevent them from hurting themselves or taking their life because they feel alone."
And that, in my opinion, takes lots of courage. The suicidal person is in tremendous pain and Scudder's team will go to them and simply hold their hand or talk or listen or give them a hug and tell them they are not alone. Certified in suicide prevention, Scudder knows that traditional avenues available to those in crisis are highly clinical and limited. The goal is to train and deploy dozens of volunteer Mental Health First Aid Responders in communities across his service area and, in the future, beyond.
We must change the paradigm of how we respond to those in distress. We must go to them rather than making them come to us. We must not just be another faceless voice instructing the person what to do on Monday morning.
Hear, hear for SISFI and let's make their mission statement our own:
"TO PROVIDE AWARENESS, SERVICES, PROGRAMS, HEALING AND RESOURCES TO ADDRESS/ALLEVIATE HUMAN SUFFERING AND TO PROMOTE EMOTIONAL WELLNESS, MENTAL/BEHAVIORAL HEALTH AND LIFE SKILLS."
This, my friends, will take lots of courage.
SISFI TOURS
But it's not that simple, is it? For some of us, due to chronic illness, PTSD, depression, or other physical or mental ailments, finding the courage to go forward is a daily battle. For others, they choose to end their suffering by completing suicide.
This month, I am honored to be working with Scudder Intervention Services Foundation, Inc. (SISFI) on their Suicide Awareness and Prevention Tour in New York City, Long Island and Westchester County, NY. While I relied on SISFI for support myself after my brother's suicide almost a year-and-a-half ago, I was shocked to learn that during their September tour they interrupted 192 attempted suicides! That's something else!!
The difference with SISFI's 'troops' is that they are truly 'boots on the ground;' that is, they go to the person in crisis rather than referring them to an agency that may only be open Monday to Friday, 9am to 5pm. At any hour of the day or night, SISFI volunteers are available to personally talk to and/or visit individuals in crisis.
As Mr. Brett A. Scudder, SISFI president says: "“It is imperative that our communities rally together to be educated and aware of the mindset of someone suffering with emotional distress and the early warning signs to intervene and prevent them from hurting themselves or taking their life because they feel alone."
And that, in my opinion, takes lots of courage. The suicidal person is in tremendous pain and Scudder's team will go to them and simply hold their hand or talk or listen or give them a hug and tell them they are not alone. Certified in suicide prevention, Scudder knows that traditional avenues available to those in crisis are highly clinical and limited. The goal is to train and deploy dozens of volunteer Mental Health First Aid Responders in communities across his service area and, in the future, beyond.
We must change the paradigm of how we respond to those in distress. We must go to them rather than making them come to us. We must not just be another faceless voice instructing the person what to do on Monday morning.
Hear, hear for SISFI and let's make their mission statement our own:
"TO PROVIDE AWARENESS, SERVICES, PROGRAMS, HEALING AND RESOURCES TO ADDRESS/ALLEVIATE HUMAN SUFFERING AND TO PROMOTE EMOTIONAL WELLNESS, MENTAL/BEHAVIORAL HEALTH AND LIFE SKILLS."
This, my friends, will take lots of courage.
SISFI TOURS
December 29, 2014
Beginning to end...
We begin so many times in our lives - at birth, first tooth, walking, school, college, career, marriage and so on. We also end equally as many times through changes in personal habits or work, residences, loves, friendships, health, diet and death - either ours or of those we love. Call it a metamorphosis or an analogy of life.
As a young girl I simply wanted to wander in wonder all the days of my life. I wanted to let life unfold and be an observer. I guess that's why I became a journalist as my first career. But stuff happened and plans went awry. And then I got really tired; exhausted by all the daily challenges and changes and hiccups. I (and you) ask ourselves if we can make it through another day.
And we do.
And we delight in the amazing, wonderful things that occur - even the tiniest of treasures, like a bite of a ripe banana.
We also mourn lost opportunities, friendships, or people who've passed away - especially the folks, places or things that held a piece of our soul.
Merriam-Webster's definition of soul is:
The spiritual part of a person that is believed to give life to the body and, in many religions, is believed to live forever; a person's deeply felt moral and emotional nature; the ability of a person to feel kindness and sympathy for others, to appreciate beauty and art, etc.
There are two instances in my life when I knew I truly connected with my soul. The first was when I had Stage IVB cancer and near death experiences and the second has been since my brother died in August 2013.
A sense of soulful, holy spirit is what we are supposed to feel during the holiday season and many of us do. This year, however, I feel I floated through Thanksgiving, Hanukkah and Christmas - detached and alone even though I was surrounded by the love of others. I am thankful for the souls on 'the other side' who made themselves known to me either by images and scents or simply the awareness that they are nearby. Meditation is also a great tool that helps me reconnect my soul to those beyond my reach.
My soul remains raw yet intact. The pieces that have been lost to me will eventually return to fill me up more deeply but differently; like new, bold colors that stay within the lines.. At least that's how I envision it.
And because I know myself better than any other soul, I want to end this post with a humorous quote by children's activist, trumpet player, music producer, songwriter, and television producer Quincy Jones.
"I've always thought that a big laugh is a really loud noise from the soul saying, "Ain't that the truth." Quincy Jones, Victory of the Spirit
T'is true, indeed. Happy, healthy New Year to all.
As a young girl I simply wanted to wander in wonder all the days of my life. I wanted to let life unfold and be an observer. I guess that's why I became a journalist as my first career. But stuff happened and plans went awry. And then I got really tired; exhausted by all the daily challenges and changes and hiccups. I (and you) ask ourselves if we can make it through another day.
And we do.
And we delight in the amazing, wonderful things that occur - even the tiniest of treasures, like a bite of a ripe banana.
We also mourn lost opportunities, friendships, or people who've passed away - especially the folks, places or things that held a piece of our soul.
Merriam-Webster's definition of soul is:
The spiritual part of a person that is believed to give life to the body and, in many religions, is believed to live forever; a person's deeply felt moral and emotional nature; the ability of a person to feel kindness and sympathy for others, to appreciate beauty and art, etc.
There are two instances in my life when I knew I truly connected with my soul. The first was when I had Stage IVB cancer and near death experiences and the second has been since my brother died in August 2013.
A sense of soulful, holy spirit is what we are supposed to feel during the holiday season and many of us do. This year, however, I feel I floated through Thanksgiving, Hanukkah and Christmas - detached and alone even though I was surrounded by the love of others. I am thankful for the souls on 'the other side' who made themselves known to me either by images and scents or simply the awareness that they are nearby. Meditation is also a great tool that helps me reconnect my soul to those beyond my reach.
My soul remains raw yet intact. The pieces that have been lost to me will eventually return to fill me up more deeply but differently; like new, bold colors that stay within the lines.. At least that's how I envision it.
And because I know myself better than any other soul, I want to end this post with a humorous quote by children's activist, trumpet player, music producer, songwriter, and television producer Quincy Jones.
"I've always thought that a big laugh is a really loud noise from the soul saying, "Ain't that the truth." Quincy Jones, Victory of the Spirit
T'is true, indeed. Happy, healthy New Year to all.
December 9, 2014
At a loss for words...
It's criminal when a writer loses the ability to write. I suspect it is because this blog is so very personal that I have been silent for so long.
You see, as we've slowly slid into the holiday season and I, like many survivors of suicide (the correct term for those who have lost a loved one to a completed suicide), find myself in the depths of grief and longing once again, it didn't help that we finally closed out my "brudder's" storage unit, giving away the last of the items it contained - a shelving unit.
For a year I've been going back and forth to that space - a little haven where I was surrounded by his art, his personal belongings, his essence. Of course, many large and small bits of his 'stuff' are now in my home but it was like going to his grave (where I have yet to go since his headstone was placed) and it made me feel close.
I was his "Twisted Sister" and he was my "Brudder from Anudder Mudder" but that was what made it all so special. He was truly my best friend (even though we fought in recent years) and with our father gone as well, the convoluted combination of holidays we celebrated are no longer as cheery, silly, or fun.
This is when sadness turns into nostalgia, I guess, and that's a good thing.
I've thrown myself into Suicide Awareness and Prevention efforts, helping a wonderful, gentle man launch tours and workshops and conferences in Westchester County, New York. See www.sisfi.org. At times, I don't know if I am the organizer or the participant but my involvement helps in large and small bits, just like my brother's stuff.
I'd be lying if I said I haven't had some very dark days. I have. I want to crawl into that heavenly space where he now lives and feel his embrace, hear his deep, penetrating guffaw, and see his twinkling eyes. Kind of like searching for Santa Claus who is so real but so difficult to catch. He always slips through my fingers.
For those of you suffering physically or emotionally through this holiday season, I send you all the strength of love and prayer that I can possibly muster. In turn, please do the same for me.
Love always,
Amy
My brudder and I nearly 20 years ago.
You see, as we've slowly slid into the holiday season and I, like many survivors of suicide (the correct term for those who have lost a loved one to a completed suicide), find myself in the depths of grief and longing once again, it didn't help that we finally closed out my "brudder's" storage unit, giving away the last of the items it contained - a shelving unit.
For a year I've been going back and forth to that space - a little haven where I was surrounded by his art, his personal belongings, his essence. Of course, many large and small bits of his 'stuff' are now in my home but it was like going to his grave (where I have yet to go since his headstone was placed) and it made me feel close.
I was his "Twisted Sister" and he was my "Brudder from Anudder Mudder" but that was what made it all so special. He was truly my best friend (even though we fought in recent years) and with our father gone as well, the convoluted combination of holidays we celebrated are no longer as cheery, silly, or fun.
This is when sadness turns into nostalgia, I guess, and that's a good thing.
I've thrown myself into Suicide Awareness and Prevention efforts, helping a wonderful, gentle man launch tours and workshops and conferences in Westchester County, New York. See www.sisfi.org. At times, I don't know if I am the organizer or the participant but my involvement helps in large and small bits, just like my brother's stuff.
I'd be lying if I said I haven't had some very dark days. I have. I want to crawl into that heavenly space where he now lives and feel his embrace, hear his deep, penetrating guffaw, and see his twinkling eyes. Kind of like searching for Santa Claus who is so real but so difficult to catch. He always slips through my fingers.
For those of you suffering physically or emotionally through this holiday season, I send you all the strength of love and prayer that I can possibly muster. In turn, please do the same for me.
Love always,
Amy
My brudder and I nearly 20 years ago. November 3, 2014
Death with Dignity - Brittany Maynard
Coming to terms with anyone's choice to end one's life is a difficult process and I have an unusual perspective from three points of view:
A recovered Stage 4B cancer patient who was told three times I would die during my harsh, year-long treatment.A suicide survivor - the term used when a loved one completes suicide as my brother, Steve Crohn, did a year ago August. A compassionate, health-challenged woman who is contemplating my own choices when and if I get critically ill again.As 29-year-old Brittany Maynard said: "It's not a decision you make one day and you snap your fingers."
No, it's not. Seventeen years ago, at age 36 and married with two young children, I had to fight the urge to let go - to surrender to the disease and end the outright pain it inflicted. I was determined to live because of my children. However, when it was all over, I said I would never, ever do it again; that is, I decided then and there that if I was ever re-stricken with cancer, I would not fight it and I would let nature take its course. Now I'm not so sure.
My brother chose to die with his dignity intact. Suffering from life's challenges, personal trauma and mental illness, he selected the date, time and place and how he would end his life. Found with a smile on his face I 'see' him that way today; joyous and in Heaven dancing with friends and family. As much as I railed against his actions for months, I have come to realize it was his decision and he felt it was best. I accept it but I will always miss him. I just don't question his decision anymore.
Finally, here I am today with news just last week that my white and red blood cells are, for the first time since 1997, in the normal range. I am no longer immuno-compromised. It is truly amazing what the human body can do - in time. I still suffer from Lupus, fibromyalgia, gastroparesis, severe osteoporosis, depression and anxiety but I manage day-to-day with no thoughts of ending my life.
If time is only going to make you suffer more, I do believe we should have the right to our own life-ending decision. Maynard, who had terminal brain cancer with just months to live, had to move to Oregon to have that option. Other states are beginning to craft legislation that will allow assisted death in cases such as Maynard's.
Yesterday, surrounded by family and friends, Maynard wrote:
"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!"
May we all have the option to die with dignity and grace.
Britanny Maynard in People magazineOctober 2, 2014
Pain, pain go away...
It hurts. I hurt. Where? Everywhere and anywhere. It's in my back, my arms, legs, neck, stomach, head and, even, my butt. I'm whining about Lupus, fibromyalgia, osteporosis, gastroparesis, arthritis, my worsening eyesight and the cold weather that's starting to settle into my bones in New York.
I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.
Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.
Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:
Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. And because neither of us can stop it, I added a fourth which is our passion: Advocacy.
My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.
I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.
Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.
Picture credit: http://www.princesswarriorlessons.com/
I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.
Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.
Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:
Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. And because neither of us can stop it, I added a fourth which is our passion: Advocacy.
My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.
I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.
Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.
Picture credit: http://www.princesswarriorlessons.com/September 17, 2014
Crohn's Disease ... No laughing matter
Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.
I hope you find it interesting and educational.
The Pharmacologist - September 2014
Article begins on page 132.
I hope you find it interesting and educational.
The Pharmacologist - September 2014
Article begins on page 132.
September 15, 2014
Life takes its time...
Last time I wrote, I expounded on what it feels like to turn 54-years-old after never thinking that I would even live this long due to cancer, lupus and chronic illness. None of my doctors gave me any encouragement. But life takes its own time and I'm glad.
Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!
Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."
Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.
Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.
Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.
The only thing we forgot to do was take a family picture! Rats.
Mulberry Street, NYC
Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!
Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."
Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.
Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.
Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.
The only thing we forgot to do was take a family picture! Rats.
Mulberry Street, NYC
