Acceptance in human psychology is a person’s assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest, according to Wikipedia. It can be a cause for change, a place where you can find overwhelming peace if you just do it or a bitter and painful pill to swallow in some circumstances. I first put some thought into the meaning and importance of this word upon viewing author Kelly Corrigan’s speech entitled The Mount Everest of Human Emotions, by the Nantucket Project. Acceptance was her main theme.
Kelly came to our barn when she was on her book tour for the release of her most recent book, The Glitter and the Glue, to do a reading from it for a fundraiser for Family Lives On. I had read her previous books prior to her visit and upon doing so, always felt a real emotional connection to her story, her narrative. She has a deft way with words, mincing them with powerful emotion and human circumstance and relationships, to enable you to relate with every phrase…and feel it. You feel it even more when she delivers her prose in person. I felt it, while watching her presentation on You Tube, as she was speaking about the act of embracing life in all of its complexity. I felt the part about accepting the unadulterated reality of bad things happening just because they can and the lost potential that we, as parents mourn for in our children. You see, we have a son who was diagnosed with a chronic illness at the age of 15, more than five years ago. The diagnosis was pretty much treated like the proverbial,” take 2 pills and call me in the morning,” case, not the, ” take five years, to lose two years of high school, spend more time in bed and your bedroom floor than you would ever care to imagine, have no relief from your symptoms that is long lasting and hard as hell earned, medication dependency to get through a day, ostracizing you from your peers at a crucial time period ( age 15 to 20),” emotional and painful rollercoaster experience that in all reality…it is.
What is it? and why am I writing about it now? You see, I have shared little glimpses into his struggle in a couple of my past posts. It has been a heavy part of our lives for the last few years but we all have weighted struggles in some way, shape or form, do we not? I am trying to emphasize the beauty of life in my Blog at Life’s Patina and trust me, this aspect of our lives has not been beautiful. I had been planning on creating a few posts this Fall that accented how you could bring the beauty of the outdoors that is so prevalent at this time of year, indoors.
Posts that were not too deep or heavy. Fluffy and uplifting material for the senses. I digress, for I have not been feeling fluffy, uplifting or light in any way for that matter recently. Shane has had to, yet again, withdraw from his second try at college, this time with the harsh reality of the pent up emotions that he has been suppressing, hitting him square in the face. Upon facing this realization, my emotions could only be described as an overwhelming sadness, a heaviness that makes one feel very small, like they just want to curl up under the covers and not get up. Like they could not head out on the road and take on the upcoming picking trip to Virginia that they normally relish in, let alone figure out how to help him. There was no way that I could pick up the trailer, load it after selecting what to bring home and then drive it home. It is amazing what your emotions do to you. They can paralyze. One can only imagine the emotions of those stricken with an illness that has no cure, only a day to day battle.
Back to the acceptance part…one of the hardest parts of life I think. Things happen to us on our paths that we have no control over. What we do when they happen is up to us. Out of control we may be, our emotions our thoughts, our bodies, at times, but control we do have to reign it all back in. What is this illness that we had never heard of five years ago but has become a mainstay of our conversations and a teeth gritting accepted fact of life for Shane?
Postular Orthostatic Tachycardia ~ POTS for short
A subset of Dysautonomia
What is Dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
It is time to get out from under the covers and shout from the roof top to create awareness for this illness. For goodness sakes, we have met patients who took years to be diagnosed after appointments with countless Doctors. Who have gone through multiple surgeries to have no relief, whose quality of life is only a fraction of what it once was. One realizes when they become patients at places like the Mayo Clinic, how many people are afflicted with illnesses that you never even knew existed. We all know of the big ones, and that is where the research money goes. We need to try and help the lesser knowns whose populations are affected in the same life altering, grueling ways.
We typically do not host a Preview Party for our Holiday Open House and pair with a charitable organization for it is such a quick turn around from our Fall Sale. It takes a lot of time to secure the organization, work on promo pieces and spread the word. This year is different. We had to act quickly and that we did. Life’s Patina is hosting a Preview Holiday Brunch to both give our friends a first look at all we have collected for the upcoming Holiday season and to raise funds and awareness for Dysautonomia International. An organization who seeks to better the the lives of those afflicted by creating Awareness, Advocacy and Advancement. To find out more about them, you can click on the following link:
http://www.dysautonomiainternational.org/index.php
To view Kelly Corrigan’s The Mount Everest of Human Emotions presentation given by the Nantucket Project click here:
To view the list of our upcoming Holiday Barn Sale Dates where we will be giving a portion of all proceeds to Dysautonomia International click here:
https://lifespatina.com/events/
To register for our Preview Brunch click here for reservations are required:
To read something that is light and fluffy, check back again! Thanks for reading the heavy stuff!
~Meg
Hoping for relief of some sort for Shane. You are strong for sharing your struggles and stronger for going through such trials. He’s blessed to have you and your family. Hugs
Thank you Maureen for your kind words! They are heartfelt and I appreciate them. Hugs to you as well!
My dear Meg, I know this was hard to write; I so appreciate that you shared it for others to better understand your story! Awareness definitely brings about more acceptanc. And you know I so completely understand having to accept whst you didn’t expect. Hugs to you!!!
You know all too well how life can take its unexpected turns Heather. Love talking to you about those challenges. Onward and upwards Heather…onwards and upwards my friend! xoxo Meg
Meg, Thank you so much for sharing, for giving grief words.
“People who wade into discomfort and vulnerability and tell the truth about their stories are the real badasses.”~ Brene Brown.
Can’t wait to provide whatever support I can, just as YOU have done for so many.
Chris, you know first hand about grief for your daily work is all about giving grief words, and wonderful work it is! You know how much I too, love Brene Brown…thank you for sharing that quote and your support! xoxo Meg
Meg, I was delighted to see Chris at our All School Cookout this fall. As always, I asked about his mom and dad and family. He told me that his brother was back in college, so I thought that you folks were all in a better place.
I am so sorry to read your recent blog. I had no idea that you were all struggling so much with this as part of today and not have it as part of the family history. My heart goes out to all of you because the family bears the weight of a struggle like this.
I will check with Wendy to see if we can get to your brunch and support your cause.
In the meantime, I send you and Chris my very best for strength and renewal as you move forward with these challenges. You are good people and deserve to have happy days ahead.
Great affection to you both,
Tom
Tom, I was so sorry that I could not attend the All School Cookout as well. Christopher was so excited to be able to go and loved talking to all the teachers there! Yes, Shane had been at Catholic University and just came home this past Friday. His body just cannot maintain a normal schedule or regular activities over a prolonged period of time. We are hoping and praying for some normalcy for him and his path towards independence and his future. I so appreciate your kind words and thoughts for yes, it is tough on the whole family. The brunch is a part of the fundraiser for we will be giving a portion of the proceeds from the entire sale, Thursday through Sunday, to Dysautonomia International. I still remember being in a meeting at Hill Top for the Cabaret Night and Shane was out sleeping in the car, back when he was first diagnosed. Not much progress since then, which is disheartening but we will shall move forward and hope for some relief. Thank you so much for reaching out to us Tom and expressing your thoughts. Deeply appreciated~ All my best~ Meg
Meg- I just saw this… You are such a brave, wonderful person. Our kids provide us with our greatest joys and our greatest heartaches. I hope today’s brunch was an enormous success and that you raised a boatload of money shedding more light on this frustrating disease. Love you!!
Big hugs. Stacey xo