I Don’t Know What To Say

Scarred Joy is turning a corner, as it were, regarding regular posts. Blog entries, for the most part, will now focus on what society has labelled, “special needs.” I will primarily be referring to families, that is, parents and grandparents, raising children who live with such challenges as autism, cerebral palsy, Down syndrome, etc. A family having experienced the death of a child may also be considered as having special needs.

The edginess and frank content of my posts will remain. We will be dealing with various issues, etc. that come with families living with special needs.  A goal is to raise awareness of the disabilities of our society, as it perceives people with “special needs.” We will also from time to time note the wonderful accomplishments of people with special needs.

A number of people have already encouraged Scarred Joy with this refocus. I’m thankful for such positive vibes I have received. There is a confession I have to make, however, before I go on. I confess I don’t know what to say.

I say this due to the fact I’m not an expert in the area of “special needs.” I am a mere student. While there may be professional type people who are regarded as experts, I’m not one of them. I don’t learn what I may know about “special needs” from books or listening to a professor or instructor who teaches courses on “disabilities” etc. They have their place, of course, but they aren’t the experts who teach me.

Real experts, people who live in what I call the “world of special needs”, teach me. The real experts I refer to are my daughter and her husband as well as their friends who live in the same world. My real experts also include my grandchildren who are labelled as children with “special needs.” Through such people I am given an idea of what living with “special needs” is like.

As I write I am asking myself questions like the following. Is “special needs” the correct term or is it merely acceptable. I mean, who decided to coin the term “special needs” and it becomes part of everyday language?

In my reading I have seen such terms as “retarded” or “mental” or “special ed” or “spastic,” are words of a mean nature today. The more enlightened ones who shun such derogatory terms do not use them. This begs another question, “If I have to use a term other than “special needs,” what do I use? You see I don’t know what to say.

Well, as you read this message you might ask, what does “Scarred Joy” mean? Scarred Joy is a term I came up with, to in some way capture the fact people move forward in their lives in spite of suffering. You may know of similar terms or words for this. I also use this term, Scarred Joy, when I think of families who live with “special needs.”

You don’t have to agree with me but this is how I see it. With “special needs”, there is a constant companion throughout life. This particular constant is what I call, Scarred Joy. Those with “special needs” carry scars throughout life, often caused by other people, that remind them they will always be considered “different”, not “typical,” “not the same” as “normal” people.” In spite of being known and noticed for their “differences,” they, for the most part, carry on with their lives in a Scarred Joy manner.

I say all of this because I don’t know what to say. What I mean is, I don’t know what to say when I write in this blog being dedicated to families with “special needs” as a significant part of their lives. I am open to “special needs families” teaching me as the blog continues. I invite such family members to please follow Scarred Joy. I will cherish your feedback and input into the content of this blog.

Featuring: The Autistic Author and Animator

Scarred Joy is primarily devoted raising awareness and shattering the stigma around Autism.

Scarred Joy is primarily devoted to raising awareness and shattering the stigma around Autism. From time to time the blog will highlight stories of people living with autism. Today’s post includes one of these stories. Scarred Joy is presenting to readers a book entitled, The Autistic Author and Animator and its author, Janet Walmsley.

As family members of people on the autism spectrum, we cannot allow the opinion of anyone place limits on our loved ones. As we read this post you will see what I mean.

 Janet and her daughter, Jenny, are living proof of smashing the prejudiced views of other people. Even medical professionals can miss the mark regarding the potential of those on the spectrum.

Please read the following words from Janet and leave a comment afterwards at the bottom of the post.

My book, “The Autistic Author and Animator”, is about my daughter, Jenny, who was diagnosed with low functioning Autism at the age of 3 and was told she would never talk, never do well in school, never be where her peers are and the list went on. I walked out of that specialist’s office saying, “That’s not going to happen!”

She faced many challenges on the way to reaching her dream of becoming a professional animator and published author. It is a heartfelt story which relays the importance of perseverance, courage, strength within a mother-daughter bond as their journeys intertwine – revealing a mother who was her daughter’s rock right from the beginning and did everything in her power to help her daughter see the light at the end of a dark tunnel.

The Autistic Author and Animator is a striking narrative that illustrates one’s full potential – a testament that autism is no barrier to success and fulfillment. We never looked back, full speed ahead with always taking the positive out of Autism, and yes, there were bumps and trials however we trucked through them and learned from them.

Jenny is an inspiration and role model not only for the Autistic Community but also for the General Public as I have so many say to me, “Wow, if that girl can go through what she did and be where she is today, what is stopping any of us from pushing down our barriers and going after our dreams and goals, we want to do a Jenny!”

Jenny is now 26 and is a professional 2D and 3D Animator and she has a best selling, award winning Fantasy Fiction book, “Dysnomia”, which is the first of a Trilogy and getting quite a following. She just finished her second sequel to it and will be published next year.

What a far cry from what I was told when she was 3 years old, so one must never say never and be your child’s voice, sounding board and rock. Let them go to the peak that they can, as there are different levels, as they deserve a rich fulfilled life and to be a part of our society and workforce, like anyone else.

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The greater population can learn a lot from parents like Janet regarding autism. Jenny, also, can teach people the realities of living with autism. Jenny, and other people like her deserve a fair shake at reaching their potential. Anything else is unfair and immoral.

As a grandfather of two grandchildren on the autism spectrum I hope to do my share of raising awareness not only to autism but also to the people on the spectrum. With people like Janet and Jenny involved in this desire a difference in our society will be made.

If you have a story about your or a loved one’s experience on the autism spectrum please feel free to contact Scarred Joy. I would love to feature your story on a post. Please contact me through the blog at https://scarredjoy.ca. You may also contact me through email, at caledomiaspirit@gmail.com.

Please order The Autistic Author and Animator, through

Red Tuque Books at http://redtuquebooks.com/

Amazon Books at www.amazon.ca

or through Janet’s website at http://www.janetwal.wixsite.com/autismconnects.

A Story of Joshua Jordan

The vast majority of Scarred Joy Blog posts will be focused on raising awareness to people living on the autism spectrum.

This post takes a detour from autism. Joshua Jordan is a young writer whom I admire and want to promote in this Scarred Joy post. You may ask why? Well, Joshua lives in a Scarred Joy way. This means he has suffered in his life yet chooses to move forward. He has experienced hell on earth at the mercy of human monsters. The wonderful thing about this is, he has lived to tell about his experience.

Joshua expresses his pain in two books he has written. His books, Shopping Cart Boy (2018), and Soul Rape Soul Rage (2019), offer sobering accounts of the horrifying abuse he experienced by other people.

Scarred Joy posts tend not to by shy about the reality of pain and suffering in life. I’m honoured now to present my readers with Joshua’s story in his own words.

Through my writing and speaking I want to make a difference in people’s lives. I want people to know what it feels like to be a kid taken away from his mother because of addictions.

I believe that pretty much any day with my alcoholic mom was better than what I went through in foster care. That is saying a lot, my mom could be pretty hard to live with at times.

With my mom I was always warm, dressed nice, fed and loved. In one of the foster homes I was in I was abused badly. For some time I wasn’t allowed to see my mom which made it even harder.

I would cry and cry when I had to leave her and then acted out when I went back to the foster home. At the time I didn’t understand that was one reason they stopped our visits. I was only seven when I thought about killing myself for the first time. I just wanted the pain to end. When I didn’t get to see my mom anymore I thought she had forgotten about me.

I don’t write a lot about my mom, as I don’t want people judging her. My mom had a rough life due to abuse at an earlier age than me and by more people.

Now and then mom became drunk causing her to fight with people. A lot of guys were afraid of her. I knew she would protect me if something happened at home. I found it hard seeing how out of control she would get including saying stupid mean things to me. I believe beside her hurts, addictions, and things going on, she may have had a mental illness or at least severe depression.

Being sexually abused when you are young is a challenge to get over. There are not many counselors who are skilled at helping victims of sexual abuse. I went to some and they wouldn’t even let me talk – they said they were relationship building so we could talk about it. I got angrier about my abuse when this would happen – it is like teasing someone that you have the medicine they need to make them better but you aren’t going to give it to them.

People often think you must keep quiet about being sexually abused as a child. They think if you are a kid it is easier to get over things. I think kids try to protect their parents and other people by not talking about it. I also think organizations like Churches, counselors and police should make it easier to talk about than it is.

Going back to live with my mom was great until she started drinking again then died from complications from AIDS. I will never forget the day she died and how hard that was for my brother and me. He has his own troubles and is eighteen years older than me. I lived with him for a while but it didn’t work out. I then went to live with someone I knew from foster care who had been nice to me. She kept me as her son and tries to understand and help me.

I never thought I would be as popular a speaker as I am with my book. On my own I’m not great at public speaking. My adopted mom helps me by being with me when I speak. She keeps me on track and helps me from being too nervous.

 With experience I have become a better speaker and realize people want to hear my story. People have told me they had no idea there are so many kids like me. They are kids who need help and understanding as well as lots of patience and prayer.

The poems Joshua writes in his books are raw and horrific. He desires to make a real and beneficial difference in the lives of other people. In this desire we read the words of a compassionate young man.

Readers, I urge you to purchase Joshua’s books.

Shopping Cart Boy can be purchased at: http://www.siretona.com Both books are available on Amazon.

An Open Letter From A Grandfather Of Special Needs Kids To Their Parents

As I write this letter I am primarily thinking of my own grandchildren who have “special needs,” and their family. I am, however, making it available to other people by including the letter as a blog post.

Dear Parents,

As a grandfather, I accept my “special needs” grandchildren may never live a “typical” life, whatever that is. I accept these children for who they are. They are unique and made in the image of God. He loves them and I can do no less.

I am so proud of your children when they reach a milestone they struggled for. They are young warriors not knowing the meaning of giving up. For instance, other people may not understand the thrill of knowing your child can now poop in the toilet. They don’t have to understand but I celebrate with you.

When I talk about my family I don’t make a big deal of it by saying something like, “I have six grandchildren and two of them are “special needs.” If part of a conversation I’m having with someone turns to bragging about grandkids kids, I brag along. I mean, why wouldn’t I? I love these children.

Before I go any farther I must make mention of an important part of your family. Other children, typical children who are part of a “special needs family,” may inadvertently be almost forgotten. If your family includes children who are “typical,” please monitor them and make sure they are doing well. Life can be lonely for such children. Give them some golden time just for them.

Believe me as a grandfather, I notice things. I can tell when a child is feeling left out. That’s where I can come into action. I can take the child out for lunch or to a movie or other fun things to do. The point is giving this child some time where he or she is spoiled for a while.

I have to admit I become somewhat angry when people exclude your children from things like birthday parties. Even if your child or children aren’t able to attend at least they can be invited. This includes family as well as friend type gatherings. There is no reason to not include children with special needs unless it is a health or safety issue. Even then an option may come up so they are not left out.

Many people make little effort to understand children with special needs. The lack of empathy they show is obvious. This is why people may seem to ignore you and your family. They don’t realize children with special needs are teachers of life. Being in their presence can expose us to our own weaknesses or strengths. These children present the “typical” population with a choice. The choice is to accept or reject them.

As parents I know your lives may differ from the lives of typical parents in a number of ways. I think of being diligent in keeping your calendar up to date. This is not for the purpose of scheduling barbecues with family or friends etc. Your calendar is used more for life and health purposes. This includes regular therapy or specialist and other related appointments. These are integral to monitoring your child’s day-to-day life.

Due to the health challenges your child or children live with there are experiences, situations, and events etc. beyond your control. Most times you can only dream of such things as getting away for the weekend or even planning vacations. This is the reality of your lives.

I see your world and now mine through the lens of a grandfather. Through this lens I see I have taken on a greater love for life. I see life is fragile and even enigmatic. As I look through my grandfather filter I see not all of life is black and white, right or wrong, good or bad. Life just is and it includes mystery!

There is mystery in the reality of special needs as it pertains to life. How is it one child or even two or three children in one family may have special needs? How does this happen? This is such a mystery. Perhaps the best thing to do, the most human thing I can do is accept these children. Accept them by seeing beyond their “special needs” and see them for who they are.

You see, in accepting children and other people with “special needs,” I may see my own needs. I may then see acceptance means love. As a grandfather I do not merely accept my grandchildren I love them. They are part of me.

I am getting older by the day. I look back over my life and I see there are more days behind me than in front of me. I know I may miss out on certain years of my grandchildren. I may be taken ill and no longer able to make a trip to see them. If this happens I trust they will always know how much I love them. This will never end.

All my love,

Papa.

https://scarredjoy.ca/

Not The Elephant Man

I don’t know if many of my readers have heard of Joseph Carey Merrick. He lived from the year 1862 to 1890. He was born with deformities all over his body and once grown up he became a sideshow, circus type of attraction. He became known as the Elephant Man.

Scarred Joy is turning a corner, as it were, regarding regular posts. Blog entries, for the most part, will now focus on what society has labelled, “special needs.” The edginess and frank content of my posts will remain. A goal is to raise awareness of the disabilities of our society, as it perceives people with “special needs.” We will also from time to time note the wonderful accomplishments of people with special needs.

Joseph C. Merrick was the subject of ridicule many times throughout his life. People were curious about him. Some people feared him out of their ignorance of knowing how to respectfully respond to someone “different.” He lived with ridicule and being misunderstood, for much of his life.

At some point in his childhood, Mr. Merrick suffered a hip injury, which became infected and resulted in a permanent limp. His life included being out into the world on his own at a young age due to an unhappy home life. He spent time being homeless until an uncle took him into his home for a while. Once the stay with his uncle ended Joseph entered a workhouse.

Through other different parts of his life, he spent time as an exhibit in a freak show and suffered such indignities as being looked at as grotesquely “different” than “normal” people. There were other times in his life where the public treated him as an object to stare and wonder at out of morbid curiosity. This endeavour hosted by some showmen at least enabled Joseph C. Merrick to gain some level of monetary profit.

As Joseph reached his early twenties the times were changing regarding society’s attitude toward freak shows and the like. This change in attitude worked in Mr. Merrick’s favour for the most part. People like Dr. Frederick Treves a surgeon at Royal London Hospital befriended Joseph and introduced him to a more caring environment. Joseph now had more opportunities to meet people than he had in his life. Treves learned Joseph was an emotional, sensitive and somewhat shy gentleman. He was not an Elephant Man to be afraid of. The hospital became Joseph’s home for the rest of his life until he died at age twenty-seven.

There are times in the lives of people with “special needs” where other people will view them as objects of curiosity. There will also be instances where a child or loved one will be addressed in a condescending manner. This may come about through statements like, “oh, she laughs just like a normal girl!” or comments like, “wow, he can do up his own shoes? He’s such a big boy.” Statements like this may be accompanied by a pat on the child’s head or a similar gesture.

While the average typical person may never admit or perhaps not even be aware of it, what I call, “the elephant man” syndrome exists in modern society. People with “special needs” may still be approached in a similar fashion as Mr. Merrick. The fact remains people are often hesitant when approaching a person with special needs, if they approach them at all.

With special needs of any kind, there is a constant companion throughout life. This particular constant is that of Scarred Joy. This means those with “special needs” carry scars throughout life, caused by other people, that reminds them they will always be considered “different”, not “typical,” “not the same” as “normal” people.”

Those of us who love a family member or someone else we love, who is labelled, “special needs,” know our lives have changed forever in some ways. The typical world may never get over seeing the “difference,” before they notice the person. We, however, must remind the world, those we love, who have special needs, are not an Elephant Man.

(for a brief biography on Joseph Carey Merrick see, https://en.wikipedia.org/wiki/Joseph_Merrick; See also https://mentalfloss.com/article/81415/new-calls-bury-bones-elephant-man-joseph-merrick)

An Expression of Love and Grief: When Parents Die: Part Two

You remember the special phone call you received each year from your parents on your birthday. You hold close your father’s favourite pair of slippers. They are the slippers he kept at your place and used when he visited you. You go into your kitchen to do some baking and the recipe is one your mom gave you. You have to sit down and compose yourself. You rearrange the suite in your basement your parents used in their later years. You realize as you clean up the area even their fingerprints left on the furniture have now gone.

The memories we may have of our parents represent a major part of our lives. Their deaths initially take us into uncharted territory. It is a territory full of emotion and change. We now take on a new title of identification, “adult orphan.” Our parents never died before. It may take a while for the shock to subside. One may describe this as feeling numb. We may be devoid of words for a time in coming to grips with this loss. As shock begins to subside it can result in a deep expression of grief that seemed to pass us by at first.

When my father died I didn’t like the thought of him lying in the hospital morgue. A few days after my mother died I thought I heard her calling my name. The grief experienced after the death of parents may be of a profound nature. It is unique. It does not feel like anything else one has experienced. It is final. It cannot be fixed.

Our parents are not coming back. This realization can seem too much for us to process. It can be brutal on our emotions. Days may drag on as if never to end Nights may crush us with loneliness.

In the mercy of God we may begin to sense enough that life will forever be changed. The realization I am an adult orphan did not strike me until the death of my mother. Dad had died a few years before her. My life had taken on a different status. I was no longer someone’s son. It struck me as strange. I asked myself question, like “what do I do now I have no parents?”

My grief drew me to my writing. Words helped me express this path once foreign in my journey through life. I wrote a poem that I included at the beginning of this post. I don’t claim to be a poet. I wrote the words for the sole purpose of giving expression to my grief.

Death comes to us all. Regardless of the unrealistic view many in the western world have of death it is still a part of life. It will not allow us to evade, deny or pretend it does not exist. Death came for our parents and will come for us.

When you consider your own children you may look at them and think to yourself, “Where did the time go? It seems to have flown by.” Now at this juncture of your life you may be reflecting on similar thoughts. “When did my parents become old?” “I still needed them and now they’re gone.” Life is so different now.

You may be in the initial shock of losing your parents. Perhaps it has been a week or two since your last parent died. There are funeral or memorial service or celebration of life details to now put into action. It may be the funeral gathering etc. has past and life goes on as usual for many. Not for you however. You are a grieving daughter or son. You are a mourner. You are still you but someone is missing.

In my experience with grieving people I know some are hard on themselves. They fall into the trap of such things as “stages of grief.” They think there is a certain way one must now act. They listen to the voices of other people who in their ignorance think “you should be over it by now.” Your grief process is unique to you. You will live with it and honour it as you choose.

Perhaps the following questions may help you in your life without your parents. How do you honour your parents now they are physically missing from you through death? What legacy have your parents left you? In what ways do you remind other people of your parents? What did you learn from them about grief and loss? What is your grief journey like right now?

Blessings to you as you now live without your parents. Live on remembering them. Your love for them goes on.

NOTE: When Parents Die: Part One, Estrangement, Not all adult orphans look back on their relationship with their parents with fondness.”Alan Anderson, https://scarredjoy.ca/, When Parents die Part One: Estrangement, Dec. 6, 2018.

For Megory: Loved & Missed

It was an odd sensation one day early in Dec. 2018. I planned on sending an email to Dr. Megory Anderson of the Sacred Dying Foundation in San Francisco. We exchanged emails every so often since I enrolled in her Sacred Dying Vigil Training in 2015. Before I composed my email message I noticed heart wrenching words on the Sacred Dying Facebook group page. Megory suffered a massive stroke and was receiving comfort care at a hospital in San Francisco.

The news didn’t quite register in my mind right away. I wasn’t ready for it. A stroke? She’s on comfort care? What? Megory? Having worked in healthcare spiritual care for a few years I had a good idea what “comfort care” meant. To try and get my head around this news I didn’t want to believe I mentioned it to my wife. I told her I was having a hard time letting the news sink in. It did sink in however. Megory was seriously ill.

Now, please, I don’t want to make it sound like I knew Megory in a personal way. We never met in person and I regret it. We spoke on the phone once when I was chair of the end of life care team in a complex care facility I worked in. We would exchange emails now and then. That was the extent of our relationship. I missed an opportunity to meet her in person when she came to Vancouver, BC in July 2017 for some public speaking.

There aren’t too many people I’ve known of in my life that have made such an impression on me as Megory. Does that sound odd? Well, it’s true. I doubt I was on her mind as she was walking her journey through life. She, however, was on mine many times. A reason for this is I often looked through the Sacred Dying page on Facebook. I also read her books and learned from the vigil training course of the Sacred Dying Foundation. In such resources it was as if I knew Megory’s heart and that of her team as well. I loved what she said and how compassionate she was in caring for people.

I’m writing this blog post on Sat. Jan. 19, 2019. Megory has been dead for over a day now. I look at what I just wrote and it still seems so unreal. I remind myself it is indeed true. This truth leaves me pondering about my life and those I love and care for.

Truly life is like a vapor that can vanish, it is smoke, mist, breath, and it is fleeting. As I also ponder about Megory I amazed at what she accomplished in her life. When I read her book Sacred Dying: Creating Rituals for Embracing the End of Life, I create a picture in my mind Megory wrote the book for herself as well as readers. I have the idea she embraced her life with such vim and vigor that when it came time she also embraced her own end of life.

I read Megory’s final post on her Facebook page. She is celebrating events meaningful to her. In her post she in fact says, “November 29th – a day that has meaning for me.” Her words are those of promise, hope and celebration from one in love with life.

I don’t know if Megory had a family but if she did I imagine they are heart broken. I feel for the people who knew Megory well and how they must miss her. Her close friends will be missing someone they socialized with. Those she served with at the Sacred Dying Foundation must be in shock on some level. Her students will miss a unique mentor.

As I draw this message to a close I would like you to read words by Megory. In doing so I send blessings to those who were with Megory as she transitioned into death. You loved her and she loved you.

“Sacred dying rituals are primarily and notably for the person dying. It takes great strength and courage to face death and to begin to move through it to the other side. And it takes great courage for the survivors to put aside their own fears and anxieties to help their loved ones die a peaceful death.” Dr. Megory Anderson, Sacred Dying: Creating Rituals For The End Of Life, 2003, p. 44.

Oh Megory, you are missed so much.

When Parents Die: Part One: Estrangement

The fact our parents eventually die may not bean experience people want to confront.

My parents died a number of years ago. My dad died first then a few years later mom died. Her death made me an adult orphan. You may have heard of the term “adult orphan.” I belong to this group. I’m an adult orphan. What does this term mean to you? The fact our parents eventually die may not be an experience people want to confront. Not confronting this fact of life doesn’t change anything. If you have had a longstanding estrangement from your parents it makes reconciliation more challenging.

I realize not all my readers may resonate with this post. It may stir up memories you wish you could forget. Perhaps you didn’t have a close relationship with your parents. Perhaps you were estranged from them. It may be you look at the death of your parents as a rite of passage anddon’t think twice about consequences of this loss

The grief one experiences after the death of parents may be of a profound nature. It may also be a complicated form of grief due to the ongoing disagreement you had with your parents. Not all adult orphans look back on their relationship with their parents with fondness.

Those adult orphans who didn’t resolve disagreements with their parents may have blown it. This may not go down well with you but at least give it thought. At a point in your relationship you had an opportunity to resolve things and you didn’t take advantage of it. The opportunity passed you by. Now with the death of your parents it’s too late.

 Even when it is too late to make amends with your parents you can make peace with yourself. You can own up to your part in the distance you and your parent(s) caused between each other. Most times it is something either of you could have remedied but you just didn’t. You let things go on because of pride or stubbornness or lack of true love. No one made thefirst move toward reconciliation. So sad. Time continued on and your parents passed from the scene.

Reflecting on your dysfunctional relationship with the people who brought you into this world may be a teaching moment for you. You may learn something about yourself. The energy you used in keeping a distance between your parents may now be used to look at yourself. Who do you see? By chance do you see a reflection of your parents as you look at yourself?

Who or what do you see as you reflect on yourself? A few thoughts may be going through your head as you gaze at yourself. “I see a stubborn person.” “I feel a deep sense of loneliness now my parents are gone.”“I recognize times in life where I wanted to make amends but didn’t.” “I’m happy I reconciled with my parents before it was too late. I just wish I had done this sooner. I miss them.”

Dear reader, if your parents are still alive how is your relationship with them going? If time is a healer as some say, have you taken time to resolve disagreements? The clock is ticking. Time waits for no one. Now is the time. Don’t worry about being right, reconcile, as much as you can with your parents. Things may not be perfect but at least be civil and honouring to them.

A famous actor and his son had a falling out that lasted for years. After the father’s death the son was asked if the slate was wiped clean before his father’s death. The son replied, “What slate?” Enough said.

Coming soon: When Parents Die: Part Two—An expression of love and grief.

Beware Our Dark Side

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Just because I disagree with you, does not mean I hate you. We need to relearn that in society.

In our society today it is not uncommon to hear words like “hate speech” or “fake news” or words like “homophobic” or recently invented words like, “Islamophobic” and all kinds of terms that distance people from each other. It seems to be acceptable to throw such terms around whenever people disagree.

Terms like the above by nature may instill fear in some people. Here in Canada even government leaders use such terms and a few more. Those one might expect to know better, like leaders, would serve people more if they practiced civil language.

All of the above terms and many others represent what Scarred Joy considers to be the “dark side” of our society. This “dark side” is becoming all too common these days.

This “dark side” includes the cynical and intellectually violent attitudes many people exhibit towards those they disagree with. A posting on Facebook reads, “Just because I disagree with you, does not mean I hate you. We need to relearn that in society.” There is wisdom and truth in this statement. It speaks to me in its simple message.

The statement from Facebook reminds me of a verse in the Bible known as the “Golden Rule.” It says, “So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets (Mathew 7:12).”

Both the simple Facebook words and the Golden Rule challenge me to review my attitude regarding my role in contemporary society. I know I must restrain myself from commenting negatively about controversial issues. One of the issues that can cause me to be upset is the government my country of Canada is subjected to today. It is easy for me to say how much I disagree with most of what the government wants to do and it’s leader in particular. This is showing an example of my own dark side.

You see I’m aware of my dark side. It is often my default status when reacting to the controversial issues impacting western culture. I can sit back and criticize the decisions of others that I despise.

I have to address how I might be able to live out my life in this present day in a way that reflects the faith I live by. If I do not then I am one who lives in the dark side.

Now, let me make something clear. My faith as a Christian does not mean I accept all the influences or beliefs of the culture in which I live. It does mean that I must live in a way that reflects the One I serve. I cannot say this is an easy way to live in this day and age.

My dark side cannot and must not lead me through life. I do not have to follow the people with loud voices and aggressive responses to matters prominent today. I also need not fear those who seem to lack the capacity to show reason in their decisions.

Belief in freedom of speech does not mean I have to agree with everyone’s opinions. I do, however, respect the opinions of others without agreeing. I admit too this respect is sometimes not my first response.

I remember a few months ago when interacting with someone of social media. The woman remarking on some issue believed she has a right to judge another person’s opinion or beliefs if they didn’t agree with her own. I remarked this sounded quite odd in a democratic society. I tried to encourage her by saying the beauty of democracy is being able to disagree with each other without hating. She concluded by saying I should watch what I say or something could happen to me. She didn’t elaborate further and I never heard from her again. I pray for her.

I guess these days I could have reported this woman to the social media police or something. On the other hand, she blessed me with not hearing from her again. The reality of today assures me this lady is not alone in her imbalanced views of interacting with the beliefs of other people.

Her sorrowful view of divergent opinions reminded me “Just because I disagree with you, does not mean I hate you…”

My dear friends, whether you agree with me or not, we have our lives to live out. As an Orthodox Christian I choose to live a life of peace. This is even more reason to love and treat other people in the way I would like them to love and treat me.

Let us all beware of our dark side and live in peace as much as we can.

“A humble man is never rushed, hasty, or agitated. At all times he remains calm.”

Saint Isaac the Syrian

 

Sinking Into Illness

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Anticipatory Grief

A couple months ago I posted on my Facebook page for people to send me suggestions for my Scarred Joy blog. I received a great one from a writer friend, Sally Meadows. Here is what Sally had to say.

“Having experienced it myself a couple of years ago, I would like to see a blog about “anticipatory grief”–when you start grieving about something/someone sometimes long before it might happen. You just know it down in your soul that something/someone is going to end/leave…it could be a relationship, a job you love, or perhaps someone is dying. Have you had experience with that, Alan?”

In this post I will give a definition of “anticipatory grief,” unpack it a bit, then offer a short story to illustrate this grief.

Here is a definition of anticipatory grief from the writing one of the main people I turn to as a resource for issues regarding grief.

Anticipatory grief” is a term that referred to the grief felt about someone with a life-limiting illness; friends, family, and caregivers felt it in anticipation of an eventual death. We now understand anticipatory grief or what Dr. Rando, a prominent grief therapist and author, prefers—anticipatory mourning—as a reaction to all the losses experienced in an illness.” (“Grief, Loss, and Caregiving”, Kenneth Doka, page 200, Caregiving and Loss: Family Needs, Professional Responses, Edited by Ken Doka and Joyce D. Davidson, Hospice Foundation of America, 2001.)

Notice the progressive step in defining anticipatory grief. It has been used to refer to grief associated with feelings family, friends, etc. experience related to a loved one’s eventual death. The definition has been expanded to where it includes grief expressed over all the different losses a person experiences in the context of an illness, not just the grief due to impending death.

In “anticipatory grief” we mourn plans that will never come to pass. Grieving that this past Christmas was the last one to be celebrated with your loved one. There may be a loss of living “at home” and now being confined to a care facility. A primary caregiver or family members may be trying to imagine what life will be like after the death of their loved one.

Some people may experience anticipatory grief on a deeper level than the death of their loved one. Such things as when our ill loved one loses the ability to speak. This may be accompanied with a number of issues adding to one’s suffering. The sick person and family members may be frustrated as to how to now communicate with each other. The possibilities of having meaningful conversations with the loved one are now remote.

Family members may grieve times together that will never be. The holidays they wanted to plan, the special celebrations they wanted to enjoy, die with the loved one. Vacations will never be the same without the loved one. This is what Dr. Ken Doka refers to as a loss of the “assumptive world” (Doka, page 200). The life together they hoped for will never be realized. All of one’s life is altered with the death.

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A Story of Jim and June (not their real names): An Illustration of Anticipatory Grief

Jim and June were looking forward to putting their plans in action as soon as he retired. For the past five years they had planned a road trip in their RV to drive all over Canada and the United States. It would be a trip of a lifetime. Jim worked a couple years longer than he intended but now the time had come. Working longer allowed them to save enough money to pay for their RV in cash.

After retirement they were both excited at the prospect of putting their travel plans into action! The RV was insured and they had mapped out the route for their trip. They gave copies of their plans to their children so the kids could know estimations as to when they would be at certain places on their trip.

It was soon after Jim’s retirement that June began to not be feeling well. After some coaxing Jim convinced her to make a doctor appointment. He accompanied her to see the doc and it was good he did. After his initial assessment the doctor referred June to an oncologist. The result of the oncologist’s examination was conclusive. June had pancreatic cancer. To make matters worse the cancer was spreading to the point the oncologist was not hopeful June would recover.

As time progressed so did the cancer. The plans June and Jim had for travelling gave way to doctor appointments. In fact, they decided to only have short trips on the occasional weekend. June couldn’t face being away from home for too long. As she became weaker from cancer treatments as well as the illness Jim and June decided to sell their RV. The dream of travelling around North America was shattered.

The couple would have quiet moments at home where they would talk about their lives together. The cancer was slowing June down to the point that even short walks with Jim around their neighbourhood were too much. She bemoaned the reality that she was dying.

Jim recognized he was experiencing a profound sense of grief at the prospect of losing June. It would keep him awake at night. He would have periods during the day that he would cry at the thought of life without June. He may be doing something like puttering in their back yard but his thoughts were consumed by June’s illness. One time, he went into his workshop just to be alone as he cried bitter tears. He didn’t know if he was crying because of June’s cancer or his own grief. Life wasn’t the same anymore and he dreaded what it would be like after June died.

Anticipatory grief is real and common when things take a major turn in life. It is something you may have experienced. If not, you will.

Perhaps you are experiencing anticipatory grief right now. You don’t have to be alone in this part of your grief journey. Please feel free to share some of your thoughts with me if you like.

Love your life as much as you can. Put aside the petty things that really don’t matter. Be happy rather than always wanting to be right. Remember to never take life for granted.

Until next time, bless you all.