Tuesday, July 18, 2017

ALS or INSPIRATION: What Makes Kay's Star Shine?

I met Kay today, and I'd like you to meet her, too. She's a fellow blogger, a retired high school math and computer science teacher with Midwestern roots. She raised two kids and now enjoys two grandkids.

Kay's Facebook blog, Kay's Shining Starsreveals a brilliant mind, sharp wit, attention to detail and a bedrock attitude about rolling with whatever life hands you. For Kay, life literally rolls.

She spends a good part of her day in a power chair with everything at her fingertips...except that Kay no longer has the use of her limbs. No sweat; Kay is a problem solver:
"For the past year+ I've gotten along by duct taping a long stylus to a ball cap. I look like a giant bug as I use my "stinger" to peck out texts and fully utilize my iPad, in spite of my non functioning fingers."

Inspiration

[Source]
Every so often, when a pity party or the mirage of an insurmountable problem infects my attitude, I know the best antidote is a dose of inspiration. Sometimes I find it in a book or a walk in the mountains, but in human form, inspiration can also be breathtaking. Kay inspires with a universe of love. It is a calming pulse, as smooth as her complexion, which draws people in, like hummingbirds to nectar. She knows her limits and yet freely rides beyond time and place on that pulse of love.
"It is highly unlikely that I will get the chance to visit my hometown again. But I visit it often in my dreams, and I like to daydream of a bike ride about town visiting my favorite landmarks and recalling precious memories. I can't go home home, but home comes to me. Here are my hometown Shining Stars who continue to show up to offer support every Walk to Defeat ALS. Love you guys." 
Readers of my series on living beyond disabilities, discovered what Kay views as one mission of her blog:  "It's all about awareness."  The Coach believes it is also important to recognize the humanity of those who inspire; they have the right to express a spectrum of emotions. This is exactly what I (and her hundreds of followers) love about Kay's Shining Stars:  she tells it like it is! But don't expect to read something dismal:  Kay may be living with an incurable disease but she is not spending her days 'dying'! She maintains hundreds of friendships-- those 'Shining Stars'-- each brightening in Kay's universe of love.

  With permission, I am reblogging one of Kay's awesome posts:

I am a Low Talker

Maybe you remember the episode of Seinfeld with the "low talker" who no one can understand and it ends with Jerry wearing the "puffy shirt" to an important event. Very funny. But now that I am a low AND slow talker communication issues are a real challenge and not so funny.
I really miss being in the thick of a robust, entertaining conversation, Interjecting interesting, witty or annoying tidbits to keep the conversation rolling or telling my own usually enhanced story. Now I've become more or less an observer. By the time my oh so witty comment can be formed by the muscles of my tongue and mouth, the conversation has moved on. This was super frustrating when it first started happening, but now I'm getting better at sitting back and soaking it all in. This is actually a skill that most of us should practice more frequently as you learn so much this way.
But I'm much better in quiet one on one situations.
Kay wears her brilliant humor
[Source]

Here are some tips for talking with people like me. By the way, it is almost always well meaning strangers who make these errors.
Listen carefully, stand close, and make eye contact. 
Repeating things is very hard and takes so much energy. You will likely have to do some lip reading. I've stopped repeating things when people say, hmm or what, which happens all the time now. And guess what, mostly the listener does grasp the gist of what I tried to say or it really wasn't important enough to repeat anyway.
Do not asśume that my ślow voice means I'm mentally challenged. 
It makes me craźy when you address my caregiver or talk to me aś you would a small child.
Please use your normal voice, volume and vocabulary.
I do realize the woman at the hospital was just trying to be helpful last week when she said in a sing song voice, "Do you want some juice, sweetie?" Before I could reply, no just ice, she repeated loudly and slowly, "Do. You . Want. Some. Juice. Sweetie?" Now I'm just sounding ungrateful, and I'm really not, but part of me wants to SCREAM when this happens. "NO I DONT WANT YOUR STUPID EFFING JUICE CUP. I WANT TO WALK. I WANT TO RUN. I WANT TO RIDE MY BIKE. I WANT TO HUG MY CHILDREN. I WANT TO SIP A FINE WINE. I WANT TO LEISURELY ENJOY A MEAL. I WANT SOME SHRED OF PRIVACY. I WANT MY LIFE BACK. BUT WHAT I REALLY REALLY DONT WANT IS THAT STUPID JUICE CUP!!!"
But I said nothing, drank the juice and whispered thank you to the nice lady.
At least no one has tried to put me in a puffy shirt, but this happens a lot these days.

Thank you, Kay, for letting us laugh as we grow in awareness!

To refresh your awareness with other inspiring people, readers may wish to visit my posts:
Part 1 Debunking Stereotypes
Part 2 Getting By or Growing Great
Part 3 Enjoy Your Journey

To read more about supporting someone with a terminal illness:
Ask the Coach: What to Write to a Friend with Terminal Illness

Thank you for caring!

Tuesday, June 27, 2017

Grow Up! The Condolence Basics You Need Now. Part 1

Grow Up! 

How many times did you hear that before you were 25? Are you still hearing it in your 30's or 40's? If so, someone is trying to persuade you toward mature choices. "Grow up!" is a verbal face slap, taking you by the figurative shoulders for a shake and command: it's time to think of somebody other than yourself.  "But I do think of others!"  you protest. The Condolence Coach agrees and believes you are trying, but...

If you're stalled on the playground plateau of just playing nicely, mastering condolence skills will launch you off the swings and onto solid grown-up ground.

[Author photo]
This post reaches into the Condolence Note Coach archives to quickly deliver the basics you need now. Clicking on the post link will flesh out the concept, but if you need a 5 minute crash course, here it is.

1. Beyond 'I'm Sorry'  You can't change the circumstances facing your friend, co-worker, neighbor, cousin or client...but there is an additional way to communicate sympathy long after the loss:  a memorable condolence note.  


2. FAQ's  It is never too late to send a note. Never. The death remains a fact in your [friend or] co-worker's life and, in a year's time, the stream of sympathies has likely dried up. Your note will be a gift. Don't Rush Your Condolence Note  Waiting can enhance the note you will write…as you have opportunities to gather a little information, view photos, hear stories.

3. To Have Another Birthday is a Privilege  We are powerless over the loss and subsequent pain, but saying "I'm sorry" and applying a sincere hug or handshake is an act you DO have power over. You have the power to express that you care.

4. In A Better Place  It is never appropriate for you to offer a platitude such as "she's in a better place." But if the grieving express this to you, a lovely reply might be:  "I'm glad that is a comfort to you."

5. Death Doesn't Take a Holiday  Can sympathy be commingled with seasonal greetings during holidays and other special days? It can’t.  Should traditional messages be set aside? Yes.

6. Condolence After a Suicide  Survivors of suicide [family of the deceased] have great need of compassionate, non-judgmental words. Acknowledge a normal life, once lived: share a memory or tell a kind story.

7.  When Children Die
A good condolence acknowledges the pain and offers to listen. The note says that you are praying for comfort, but does not tell the recipient to. You pen a sweet memory and hope to hear some of theirs. Grow in awareness and sensitivity: do some reading about the grief experiences of parents.

8When a Pet Dies  DO NOT ask when they will get another pet. Period. 

9. Supporting Grieving Teens  Journaling or writing poetry is one of the most widely suggested tools for teens to process grief. Consider a “condolence gift” of a blank book or journal. Write a question on the first page, like: "How did you feel when you heard the news?"

 10.  Supporting Someone with a Terminal Illness  Remember this: until you are dead, you are alive.  Recognize the life, the day-by-day simple moments of the person you write to. Embrace the opportunity to say thank you, to ask for a story, to appreciate a sunrise, a funny pet, a song.

So, did you notice that writing condolence is about supporting survivors? The Coach invites you to read The Mourners Bill of Rights   One of the grown-up skills you are adopting is COMPASSION. Living compassionately, daily, is a standout characteristic. You will be astonished by how it changes you!

Thank you for caring!


Tuesday, April 25, 2017

Keli-Ann Shares: What I Learned About Losing a Step-Child

When I read Keli-Ann Pye-Beshara's article, What I Learned About Losing a Step-Child in Grief Digest Magazine, I knew this was a new and helpful perspective on grief, and wanted to share it with readers of The Condolence Note Coach.

According to Smart Stepfamilies.com, over 40% of married couples in the United States are blended families; children from a previous relationship now share at least some of their time with a new household. Here are details from a 2011 Pew Research Center report:
  • 42% of adults have a steprelationship--either a stepparent, a step or half sibling, or a stepchild. This translates to 95.5 million adults. (When you add the more than 5 million stepchildren in the US, the total is over 100 million Americans have a steprelationship.)
  • 13% of adults are stepparents (29-30 million); 15% of men are stepdads (16.5 million) and 12% of women are stepmoms (14 million). NOTE: This is only of stepmothers (married or cohabiting) of children under the age of 18 and does not include stepmothers of adult stepchildren. Adding those women could double the estimate to 22-36 million. The same could be said of stepdads.  
A lot of issues arise in blended families. Some which are rarely addressed include dynamics of death, grief, and the attitudes of others. We may privately wonder about the bond, the love and the loss. Should a "step" relation's death hurt as much? Here is Keli-Ann's personal story...

What I Learned About Losing a Step-Child

Source:  Keli Ann Pye-Beshara
The title of this article by Paula Stephens “What I Wish More People Understood About Losing a Child” quickly caught my attention on my friend, Lisa Payne’s Facebook page the other day. With the article, Lisa posted “I haven’t lost a child. I know people who have. While I felt the article was well-written and insightful, I do not know if it accurately depicts the feelings of those who have suffered this type of loss…”

Unfortunately, I know this type of loss…from a different angle. The perspective I am about to share with you is from a unique position – the step-parent.

My tendency is to begin with “My husband, Besh, lost his son in 2012 due to a motorbike accident” but what I’d really like to say, for the purpose of this article, is:
 “I lost my 30-year-old step-son, Carl Beshara, in 2012.”

Since that awful day in September I have been on the wildest roller coaster ride of my life. I know I will never be able to completely get over the shock and Besh will never be the same again. The “new normal” as they call it…and that’s the closest description there is.

I wasn’t fond of the term “step-parent” 

...from the minute I married into my two “kids”, Carl (21) and Tiffany (17) – flashbacks to Disney movies with evil step-mothers or something. I had always said I wanted kids who were already born, could take care of themselves and we could hang around, have a drink and a laugh. And that’s exactly what I got. These kids were already cool independent people who didn’t need a step-mother and I wasn’t looking to be a mother either so it was a perfect match!

So for almost 10 years, these 2 kids became a big part of my life equation without me even realizing what had developed along the way.

Then when we got the call late one Saturday night on Labor Day weekend, I automatically and instinctively went into support mode for Besh and Tiffany. I just needed to make sure they were okay. That was all I could concentrate on and that was my sole purpose through all this. It helped me survive the shock, I realize now.

As I said to Lisa on Facebook:
“The hardest part is to just be with someone while they’re falling apart without trying to make them better.”
I hadn’t noticed that in this process I had put my own feelings of loss on the back burner. This was the ‘for better or for worse’ situation at its finest. I needed to be strong. How could I be a wreck on a day where Besh was feeling good? I just couldn’t do it to him…or me. Those happy moments are so precious after a life shock that we have to let them happen as long as they can…before reality and sadness hits again.

That being said, I still had/have my moments of tears and Besh has said many times, “It’s okay for you to be sad too.” And I know it’s true but it’s still difficult sometimes. I have cried and do cry, but it would usually be while I was talking about Besh and Tiffany’s loss. Their loss makes me the saddest – even more than my own.

The awareness of my unique position came to me awhile after Carl passed away when my longtime friend, Carolyn, asked me one day how Besh was doing and out of my mouth fired:
 “What about how I’m doing?” 
I shocked myself! Her eyes filled up with tears because she realized she hadn’t even asked about me all this time. We both cried and I talked about how hard it is to juggle all these things at once – being strong, holding the space, hoping with all my heart that Besh is going to survive this and practically praying for Tiffany to find her happiness and live a good life…and experiencing my personal loss.

Sometimes I felt guilty talking about my grief even when the time was right. I thought ‘How can you talk about your pain when it wasn’t even your son?’ It was a self-imposed comparative dialogue in my head that I just couldn’t shake.

2 ½ years later, having done a lot of inner work and accepting that Besh and Tiffany are okay and they will survive, I’m finding I can feel and talk about my own pain a little more, with less guilt and hesitation. I believe that if they can survive this then I certainly can too.

What I have also learned through this process is that the grief of a step-parent is under-acknowledged and has to wait its turn sometimes. It’s just the way it is and it makes sense.

Supporting a grieving step-parent...takeaways from Keli-Ann

So, my advice for those of you who know a step-parent who has lost one of their kids: 

  • From time to time, ask them how they are doing
  • Just let them cry and spill when they break down in front of you.
  • Stay with them knowing there is nothing you can do to make them feel better, but just asking them how they are doing acknowledges their loss too. 
  • And that helps to mend the wound.

+++
Wow. Thank you, Keli-Ann!



Source: Severin Koller, OpenPhoto
Keli-Ann Pye-Beshara is a blogger and professional visual artist in Holyrood, Newfoundland. Please follow the links to discover Keli-Ann's talents, insights and interests!

Paintings & prints: www.kapb.ca
Piece of Pye newsletter: 
http://bit.ly/PieceofPyeNewsletter

 To all my readers, thank you for caring!


Tuesday, April 4, 2017

Don't Be Shocked: It's Okay to Not Attend the Funeral

There are many reasons that people do not attend a funeral.

Let's run through some reasons, all of which, I have professionally witnessed:
  • Away on vacation
  • About to take vacation, which is nonrefundable
  • Moving (this happened to me!)
  • Bad weather
  • Lack of travel means or funds
  • Poor health
  • Too many deaths in close succession
  • Not speaking to surviving family members
  • Myriad fractured-relationship issues
The Condolence Coach says of any and all reasons:  IT'S OKAY. A funeral should be a magnet for care and respect, NOT an arena to revisit wounds or iron out strife.
Author photo

How do you say "I'm not coming"?

I'd advise diplomacy. You do not need to release a rant, or whine with guilt.

If you have positive feelings but conflicting circumstances
  • Express your sincere sadness over the death.
  • Express your regret at being unable to be at the funeral, but suggest a visit at a later date.
  • Under the crush of details and sadness, the responsible person may agree that "later" sounds peaceful. In truth, "later" visits and condolence notes fill a void.
  • In the interim, spend some time reflecting on the deceased:  do you have unique photos, keepsakes, or memories to share?
  • Set a reminder, if necessary, to make that future visit happen.
If you have positive feelings but prohibitive circumstances:
  • Again, your sincere sadness over the death should be expressed, as well as your regret to not attend the funeral.
  • Since "later" may not be an option, you must do more than send flowers or sign your name to a card. While those emotions are peaking, begin jotting down memories, browse through a photo album and pull one or two images. Think about the deceased: what made them unique? Did they have an influence on you? How would you characterize their legacy? Your condolence note may turn into a long-winded letter but it will be special!
  • If you are physically unable to write, dictate to someone who can, or consider a recording. Yes, a phone call is an option but as my readers know, it lacks a permanence only possible with hold-in-your-hand notes and pictures.
If you have negative feelings
  • You--and they--don't belong at the funeral. It doesn't matter if your distaste is for the deceased or survivors--please stay away.
  • I am not judging your feelings; no doubt you have suffered angst and/or anger. The fractured relationship is probably not a secret, and I can assure you that the deceased's family may have had a whispered, anxious conversation about whether you would show up.
  • It happens: funeral home staff are asked to watch for, and bar, an unwanted visitor; sometimes an arrangement is made for a private viewing by the "difficult" family member, while family leaves for dinner.
  • Please remember that a funeral (we're using that term to cover all associated pre-and-post gatherings) is a tradition designed to render comfort. Accept your limitation in this regard.
Author photo

Beyond negative feelings: 

Now that you've read the 'DON'TS' surrounding negative feelings and funerals, here is the 'DO': 
  • Listen to your heart. If you notice a caring thought or endearing memory pushing through your negative feelings, jot it down. When you feel able, visit that thought or memory again and go a little deeper. jot down a little more. 
  • Maybe you have a snapshot somewhere, showing a good time once shared; put it with your notes.
  • It's not time--it may never be time, for you to write a condolence note to someone else, but as an act of compassion to yourself, you could be the recipient of the condolence.
  • You can also write a note to the deceased! I explain the why and how in my post, Dear Frank, I'm Sorry You Died: Writing to the deceased, . This may be an excellent tool for you to express your feelings, the highs and lows. This is not a letter that will ever be read, but it can provide important catharsis.

Boundaries and Freedom

American psychologist and co-founder of the Humanistic Psychology movement, Dr. Clark Moustakas, noted that we gain freedom through exercising boundaries. He pioneered self-acceptance over self-condemnation, and wrote: 
"Accept everything about yourself--and I mean everything. You are you and that is the beginning and the end. No apologies and no regrets."
Thank you for caring!

Tuesday, February 21, 2017

Spirits Soaring: Consider Aerial Release of Cremated Remains

Like most who coincidentally learn of the service (I saw the truck in a parking lot,) I was curious to visit the website of this business...and then, I was curious to meet its founder, Greg.


Angel's-Ashes

...a simple mission with a huge impact:


“to help you gain closure in your life by releasing your Angel's-Ashes from our aircraft over a location that is dear to you or your loved one. Our aerial ash release service is the perfect way to memorialize a loved one and celebrate their free spirit. Our aerial releases are controlled and conducted with the utmost respect and dignity for your loved one.”

What draws people to Angel's-Ashes?

Greg has heard their stories, which have a common thread. “Sometimes, people don’t know what to do with the ashes of a loved one. Years can pass and still, there are the ashes…” They may be in the original box from the crematory or in an urn but, sitting on a shelf, in a closet, something feels unfinished.
And one day, it happens for someone:
"I saw your truck and it was meant to be!"
[author photo]

What draws Greg to offer Angel's-Ashes services?

Greg has been a pilot since serving in the U.S. Air Force. He crews with an airline, volunteers with the student motivational program, Wright Flight, and has flown regional and Grand Canyon tours, Civil Air Patrol, law enforcement support, and he's even towed a few banners! “I was just 15 at my first loss--my mom, Edwina; it was pretty tough. Every loss is personal and unique, and everybody handles loss differently. But no matter how you cope, it can be isolating.” Greg mentioned the commonly used funeral poem, 'I’m Not There (Do Not Stand at My Grave'). “I feel blessed to offer my flying skills to truly facilitate ‘ashes to ashes, dust to dust.’ When cremated remains are released aerially, it’s a powerful metaphor for releasing the spirit.”

Is It Expensive?

An aerial release can be arranged for about $300; that’s less than the price of a basic urn.“This is a passion over profit endeavor,” comments Greg. “It takes a lot of time.” His work includes meeting with a family to learn about the deceased and the places special to them. Cremated remains are received (in person or by shipment,) and then Greg plans the flight and conducts the release.

Where and How are Cremated Remains Released?

Greg had the privilege to serve one Arizona family who loved the open desert and mountain trails. A plan and date was made for aerial release over their extensive private property. “While normal flight is at an altitude of least 2,000 feet, I was able to fly lower because it was private property. A gathering of fifty friends and family watched as the essence of their dear one was united forever, with the desert. Aerial releases are unique and individualized. What was her favorite view? Which canyon did he love to hike? “I’ve done releases of the mixed cremated remains of a husband and wife who died within a week of each other, and an owner and his cherished pet.”
[Source: Angel's Ashes]


Greg continued, “Airspace is free and cremated remains are sterile. A release doesn’t have to be witnessed. It’s a very simple process. My airplane’s cockpit has a custom-designed and fitted special panel, with a pipe that is connected to a secure valve. When the valve is open, the cremated remains are sucked out from their container. There is no blow-back-- which could happen if they were simply poured from an open window. As I 'trail' the release, a soft dispersal of the powder-like ashes occurs. If desired, I provide a family with a keepsake certificate."

Why the dash between Angel's-Ashes?

Meeting Greg reminded me of the expression, “still waters run deep.” He has a steady peace about him; the kind that comes from hard-won self awareness. I asked Greg what words have inspired and guided him and his response was immediate: “The book, Man’s Search for Meaning by Viktor Frankl, and the quote, “It's not what happens to you in life that matters; what matters is how you deal with it!” (this quote is attributed to author, Terry Riley.) Greg acknowledged, “Everyone meets forks in the road; what choice you make each time, is significant.” He continued,
“I’ve been around the world 30 times and never saw a hearse with a luggage rack.”
"The ‘dash’ in my company name signifies what each person does with their unique life--you only get one! How do you help and impact other people? You’re probably familiar with that famous eulogy poem by Linda Ellis, The Dash. Angel's-Ashes enables each sunset to become an ongoing memorial.”

Choices:  Life, Death, Eternity

[Author photo]
Aerial release isn’t for every family. Some want to visit a niche or grave. Some want to wear cremated remains in a locket or house a lovely urn at home. Many families picking up ashes from the funeral home, have shared plans for a scattering trip to cottage, home state, and favorite spots in between. Likewise, some cremated remains can be retained and the rest released. All the more reason to have those important conversations!  

To learn more about aerial release, visit www.angels-ashes.com or use search term: aerial release of cremated remains.

Thank you for caring!








Tuesday, January 10, 2017

Anticipatory Grief: Digging a Grave

I was on a quiet morning walk when the words of an oncoming Bluetoothed walker reached me:
[Source]
"This may sound strange, but I started digging her grave in the backyard."
Pretty sure I was not overhearing a murder plot, I guessed that a dear pet was reaching her final days. While I have only once created a backyard grave, I am well acquainted with anticipatory grief.

The grief forum website WYG, what's your grief.com hosted a contributor, Litsa, who shared her experience with anticipatory grief. She explains why we jump-the-gun to begin grief's painful journey:
"Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood.   Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve."
So, if I could, I'd console that walker with an assurance of normality. No matter how much you strive to be in the present moment with your dying loved one (pet or person,) this is a natural reaction; in fact, you may have experienced it during a loved one's short term illness or their serious surgery:  "what if they die?!"

Are you Experiencing Anticipatory Grief?

Harriet Hodgson, author of Smiling Through Your Tears: Anticipating Grief, explained some of the intense dynamics of "AG"in her post at The Caregiver Space. Imagine waking up each morning on a roller coaster:
[Source]
  • Your thoughts jump around
  • You face an unstoppable force
  • Suspense and fear are part of your life
  • You feel sorrow and hope at the same time

Anticipatory Grief is Not a Shortcut

I used to think that anticipatory grief gave you a "head start" and would make the post-death grieving shorter, easier. But this proved to be a naive notion. It depends...
Grief is such an individual experience-- individualized by your nature and needs, and the relationship you share. For some, anticipatory grief lengthens the miles on this difficult road. For others, it includes intense advocacy and exhausting caregiving so that after the death, the living "rest in peace," as well...for awhile.

How can we be supportive to a friend's anticipatory grief?  

"Blue Birds" Suzy St. John
  • Express the reminder:  "This is normal!"
  • Be a good listener. Take a moment to sit together--perhaps with a cup of tea.
  • Avoid giving advice but if you've had a truly parallel experience, share a thought or two.
  • Encourage self care; this can be a time swamped with caregiving.
  • Simply ask: "How can I help?"

Bucket full of Love=Bucket List Opportunities

Litsa notes:  "Consider how you and your loved one will want to spend that time together.  Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful."

In my post, Final Conversations, I encouraged conversations of gratitude, affirmation, and life celebration. Ask questions that will spur stories, laughter, hugs. Bucket List opportunities don't have to involve parachutes or plane tickets! Quality time together is priceless, but ask your loved one if there are destinations, social occasions, or adventures they long to enjoy. 

Ask your friend how you might help with wish fulfillment.  Your role could involve driving, research and reservations, or a respite visit. Respite visits are of tremendous value:  family can step away and the ill person may find relief in visiting with a neutral person. 

My final message to readers who want to support a friend during anticipatory grief:  Be patient.

Thank you for caring!