This is a story of two cookies. One cookie lives in Los Angeles. He is quite large at over 12 inches in diameter and decorated in frosting depicting the finest of Halloween. He is a proud cookie. As he looks around in the bakery section he sees no finer cookie. He is sure he will be bought and taken to someone's home and be a much appreciated tasty holiday pleasure.
The other cookie is from New York. He is a small cookie. This small cookie sits atop a mound of other small cookies of varying shapes that have all been similarly decorated to celebrate Halloween. The small cookie is no where near as grandiose as the large cookie but he also feels that decked out in his pumpkin finery, he and his plate-mates will also bring holiday pleasure to some family soon.
As unlikely as it seems and although they come from different coasts, both of these cookies are destined for the same family in Illinois. This family in Illinois has been having some difficulties of late so a relative from each side of their family decides to purchase them a special holiday treat and mail it to them. Both purchase their favorite treats and put them in a USPS Priority shipping box.
One day before Halloween, both surprise treats arrive at their destination
in Illinois: The proud Mega-sized decorated Cookie and the plate full of small but wonderfully decorated cookies.
But alas, upon opening the treats it is obvious that something had gone awry.
The proud large finely decorated cookie arrived at it's new home shattered. It was a crumbly mess of has-been frosting decor and small pieces of cookie that had been battered and beaten much like sea glass when it spends a decade in the ocean.
On the other hand, the small cookie perched atop the tray of other finely decorated treats arrived in perfect condition. Small but proud he sat high on the pile and accepted the oohs and aahs of pleasure at his arrival. He knew he would be a welcome holiday treat in his new home!
The difference?? Although shipped in the same box, via the same USPS:
The tray of small cookies had been thoughtfully surrounded with small Styrofoam peanuts, while the large cookie had not.
Now the moral of this story could very well be that a little bit of thought goes a long way when shipping a fragile item. HOWEVER, this is not a story about the foibles of shipping. (I think you could find many of those on EBAY if you wish!)
This is a story about thoughtful gifts to others who are having a bit of a rough time. The thankfulness and the genuine pleasure at the surprise and kindness it bespeaks. And the gratitude that our Illinois family feels for all the love and support.
Oh, and the crumbled cookie? It still tastes pretty good---especially when you put some in a bowl and cover it with milk and eat it like a bowl of chocolate chip cereal! Happy Halloween!
Thanks Aunt Lynn
Thanks Aunt Monika
Personal journey, chronically ill mother of son with Marfan syndrome. Advocate, volunteer, non-profit activist, caregiver.
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Saturday, October 31, 2009
Optimism, Schizophrenia or Survival Skill?
This post was written on September 29th.
Everyday I post on Facebook, TWITTER, NMFConnect and answer countless emails. Since a goodly percentage of my contacts are either aware of my (and/or my son's) chronic illness, have their own chronic illness, or are a family member of someone with a chronic illness I receive many questions along the line of "how are you doing today?" or "how are you really feeling?". So here is the deal---when I write a status post on any of the aforementioned sites, I am telling the truth, always. So where is the problem? Well, while posting this weekend I came to the realization that since I subscribe to the philosophy of "positive thoughts, speak and action" --what I fondly refer to as ALOTBSOL (credit Monty Python--Always Look on the Bright Side of Life) that the result has been a development of a duplicitous existence--at least on the web. "Public persona" vs "personal/private persona" as it were.
The complete irony of this will not be lost on certain members of my family and very close friends who know that I grew up in a family culture that due to alcohol, ignorance and bad choices, was completely ruled by this duplicitous lifestyle. Most who knew my father, would always say what a sweet, funny, good man he was. And he was....always...in public. His "private persona" however, was much different---What most people (including all but immediate family) did not see was the angry, mean, abusive man that he was in "private". The man that actually showed glee at behavior that humiliated and demeaned. The type of behavior that should have been disavowed and prohibited by any decent husband or father.
This dual manifestation has unfortunately been his legacy to one of my brothers who continues to perpetrate the same split personality which allows him to present a public persona of decency--a model citizen, teacher, father, and until recently, loving husband. While privately, he is abusive, controlling, demeaning, spiteful and wraps it all up in a huge ribbon of rage fueled by a skewed sense of entitlement. And yes, he too is an alcoholic, however, his abusive, controlling, meanness, irrational entitlement and bursts of unprovoked rage manifested themselves at a much earlier age----way before alcohol became his best and most loyal friend.
However, I digress. This was not meant to be a bearing of the soul of my dysfunctional childhood and family. However, there is a parallel at play here, but it is a much more kinder, gentler duplicitous existence of which I have chosen to live out. As a person with a condition that causes chronic pain and fatigue I have two distinct and very real existences at play ever day. For example:
Today on my Facebook status I wrote:
Cooking up a storm this weekend in prep for Brad's surgery. Stocking the freezer with meatloaf, chicken enchiladas, meatballs and sausage. Started Friday night, and of course, in the midst of all the cooking, the kitchen sink starts leaking. Good thing we have a neighbor who is also a plumber!
Well, this is all true. Every word, every meatball! LOL. Makes me sound like a normal (albeit Type A) wife and mother spending her weekend in preparation for her spouses' surgery. However, how I really feel this weekend is: absolutely worn out, exhausted-like I am clinging on by my fingernails. Every part of my body hurts, my feet, my legs and hips, my wrists (which makes all the cooking so pleasant!!), my back, and especially my neck. In between the chicken and meatloaf yesterday I had to lie down. I did take a two hour nap--it was the only time yesterday that I was pain free: while I was sleeping.
The reality of our situation is that Brad is our healthiest family member. And he will be needing the most care over the next several weeks.. I will gladly step up and care for him, as he does for me--always. We do not have family near us, nor do we have the kind of support network here that would step in and help the way family would. That is nothing new to us, we have been through so much these past few years and have managed pretty much on our own. We have received the occasional meal from those who live near us who we consider good friends, and we are so thankful and appreciative. However, the point being, we have to do this ourselves, we know that, and we do, with ALOTBSOL and adrenaline. I CHOOSE to post positive comments and updates. I do not want to ever become the person who lets the pain and fatigue over-take her spirit. Although there are times where I am just so spent and see no relief ahead---and that CAN be discouraging. If it wasn't, there would be something seriously wrong with me. These next few weeks will not be pretty. They will be challenging. They will test my physical ability to 'keep up" in many ways. I will dig deep and find whatever reserves are hiding in the deep recesses--somewhere.
So there you are---my upbringing in a duplicitous environment has trained me well. I can feel like I've been hit by a truck and still project a positive, supportive, hopefully humorous persona. And while I profess that this is a conscious "choice" on my part--I choose to be positive. Maybe, upon examination it is actually more than that.
This post was written on September 29th.
Everyday I post on Facebook, TWITTER, NMFConnect and answer countless emails. Since a goodly percentage of my contacts are either aware of my (and/or my son's) chronic illness, have their own chronic illness, or are a family member of someone with a chronic illness I receive many questions along the line of "how are you doing today?" or "how are you really feeling?". So here is the deal---when I write a status post on any of the aforementioned sites, I am telling the truth, always. So where is the problem? Well, while posting this weekend I came to the realization that since I subscribe to the philosophy of "positive thoughts, speak and action" --what I fondly refer to as ALOTBSOL (credit Monty Python--Always Look on the Bright Side of Life) that the result has been a development of a duplicitous existence--at least on the web. "Public persona" vs "personal/private persona" as it were.
The complete irony of this will not be lost on certain members of my family and very close friends who know that I grew up in a family culture that due to alcohol, ignorance and bad choices, was completely ruled by this duplicitous lifestyle. Most who knew my father, would always say what a sweet, funny, good man he was. And he was....always...in public. His "private persona" however, was much different---What most people (including all but immediate family) did not see was the angry, mean, abusive man that he was in "private". The man that actually showed glee at behavior that humiliated and demeaned. The type of behavior that should have been disavowed and prohibited by any decent husband or father.
This dual manifestation has unfortunately been his legacy to one of my brothers who continues to perpetrate the same split personality which allows him to present a public persona of decency--a model citizen, teacher, father, and until recently, loving husband. While privately, he is abusive, controlling, demeaning, spiteful and wraps it all up in a huge ribbon of rage fueled by a skewed sense of entitlement. And yes, he too is an alcoholic, however, his abusive, controlling, meanness, irrational entitlement and bursts of unprovoked rage manifested themselves at a much earlier age----way before alcohol became his best and most loyal friend.
However, I digress. This was not meant to be a bearing of the soul of my dysfunctional childhood and family. However, there is a parallel at play here, but it is a much more kinder, gentler duplicitous existence of which I have chosen to live out. As a person with a condition that causes chronic pain and fatigue I have two distinct and very real existences at play ever day. For example:
Today on my Facebook status I wrote:
Cooking up a storm this weekend in prep for Brad's surgery. Stocking the freezer with meatloaf, chicken enchiladas, meatballs and sausage. Started Friday night, and of course, in the midst of all the cooking, the kitchen sink starts leaking. Good thing we have a neighbor who is also a plumber!
Well, this is all true. Every word, every meatball! LOL. Makes me sound like a normal (albeit Type A) wife and mother spending her weekend in preparation for her spouses' surgery. However, how I really feel this weekend is: absolutely worn out, exhausted-like I am clinging on by my fingernails. Every part of my body hurts, my feet, my legs and hips, my wrists (which makes all the cooking so pleasant!!), my back, and especially my neck. In between the chicken and meatloaf yesterday I had to lie down. I did take a two hour nap--it was the only time yesterday that I was pain free: while I was sleeping.
The reality of our situation is that Brad is our healthiest family member. And he will be needing the most care over the next several weeks.. I will gladly step up and care for him, as he does for me--always. We do not have family near us, nor do we have the kind of support network here that would step in and help the way family would. That is nothing new to us, we have been through so much these past few years and have managed pretty much on our own. We have received the occasional meal from those who live near us who we consider good friends, and we are so thankful and appreciative. However, the point being, we have to do this ourselves, we know that, and we do, with ALOTBSOL and adrenaline. I CHOOSE to post positive comments and updates. I do not want to ever become the person who lets the pain and fatigue over-take her spirit. Although there are times where I am just so spent and see no relief ahead---and that CAN be discouraging. If it wasn't, there would be something seriously wrong with me. These next few weeks will not be pretty. They will be challenging. They will test my physical ability to 'keep up" in many ways. I will dig deep and find whatever reserves are hiding in the deep recesses--somewhere.
So there you are---my upbringing in a duplicitous environment has trained me well. I can feel like I've been hit by a truck and still project a positive, supportive, hopefully humorous persona. And while I profess that this is a conscious "choice" on my part--I choose to be positive. Maybe, upon examination it is actually more than that.
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