In the Bewilds: Trekking Grief's Wilderness

The Growing Through Grief series

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Let me be clear: this is a trek with all the challenges of a Himalayan expedition: low oxygen, sapping exertion, sudden storms, and shivering alone in your tent. This wilderness of experience and eviscerating emotion--what I've dubbed the Bewilds, is both an uncontrolled ride down rapids and a process of choices. Open to it all, I find myself awed by the day's catalogue of wonders: a caring email, phone message, or invitation, a kindred soul walking her dog, another pair of hands for an unfamiliar task.

In so-named books, Alan D. Wolfelt, PhD refers to 'the wilderness of grief' as life changing. Francis Weller, MFT suggests 'the wild edge of sorrow' is an invitation to sacred ground. Just as I approached my husband's dying as a sacred journey, I am committed to trying to grieve with a higher consciousness, a patient awareness.

The formidable and even frightening solo trek becomes a mindful mile if I pause to pull essentials from my pack. Surprising reliefs are found in deep and easy breaths, the reviving self care of rations, rest, and light reading. Like an LED flashlight, a companion's visit brings calming clarity; and the littlest accomplishment soothes weariness as if pulling on soft socks. 

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In Grieving,The Sacred Art, Hope in the Land of Loss, Lisa Irish notes,

 "Loss can be mourned even as positive changes become evident."  

Numerous philosophers have explored the hair's width of space between endings and beginnings. So, trekking the Bewilds is not without tears ... or anticipation. 

Hoping to feel 'like your old self' is like reaching for your comfort food. I inwardly cringed when a 5-year widow admitted to still having painful, tearful moments. My peers help me to grasp that grieving is not like post surgical rehab. We have been 'transformed' and live a 'new normal.'

This post is simply a moment in my trek into my new normal. I know that I will continue to change and grow-- and even backup, when necessary. Every griever is a solo trekker and should be respected as such. 

The Condolence Coach continues to suggest that before giving practical advice or spiritual direction to a person in mourning, you ask them if they want it. You could say things like: This may not apply to you, but when I was grieving my dad...  or You'll know when you feel ready to... or I'm glad I have a special spot to go say hello... 

Thank you for caring!

When Dad Dies: Helping Teens and Young Adults Grieve and Grow

Image Credit: Deborah Roberts

Considering the dozens--even hundreds of books you've lugged in your school bookbag or backpack over the years, there was always one missing.

There is no handbook for life. 

We learn as we go:  by example and by experience. This is the story of a young college student suddenly faced with the death of her dad. She wasn't given a handbook for that significant journey, either. But eleven years after the death, Michelle calls the grieving process "one of my greatest teachers."

What I Wish I'd Known Before An Unexpected Loss

by Michelle Maros   

Reblogged from Peaceful Mind Peaceful Life.org text and story photos property of the author.

Happy Sunday my friends!

This week’s blog feels like a bit of a doozy, but to be honest, it’s a topic that I feel like I’ve been yearning to write about for close to 10 years. Perhaps for catharsis, or for inspiration, we will see. Truthfully, the impetus and inspiration for the blog this week came from a popular television show, as odd as that might sound! I am a super fan of the show This Is Us. I find it very relatable, cathartic, and thought provoking.

For those of you who don’t watch the show, the most recent episodes dealt with a very tragic and unexpected loss of one of the main characters.The loss of this character felt devastating, and while watching I kept wondering what I would do if in that situation. How would I deal? Can you imagine one day having someone in your life and then the next day not? Unimaginable loss.

After a moment, I realized that I didn’t have to imagine too hard. I brought myself back to my own reality. That story is my story. I have been there in my own way, and it took me a minute to own that I, too, am a person who has experienced tragic, unexpected loss. But I also know that I am not alone. It happens to people every day. Likely many of us have experienced an unexpected loss, a tragedy, an injustice, a sadness…and it is brutal.

I’ll share a bit about my own story and then I’ll delve into what I know now and what I wish I’d known then.

When I was 21 and just about to go back to college for my senior year, my mom and I booked a girls trip to California. Upon arrival after a five hour flight across the country, I turned on my phone to find dozens of concerning text messages regarding the wellbeing of my dad. I will never forget returning a call from my step-dad in a chipper tone to let him know we had arrived, only for him to respond with a very stoic, “I need to speak to your mother.” I will never forget the knowingness in my gut that something was very wrong, that was shortly confirmed by my mom’s expression on the phone. No words had been spoken, but I knew. My dad has unexpectedly passed in his sleep.

I will never forget the feeling of still sitting on an airplane on the tarmac at LAX trying to come to terms with the news and also trying to figure out how on earth would we be able to get home. We luckily were able

On the flight back to Florida after we received the news.

to find a flight back east that day, however, I’ll also never forget the five hour flight back (pre-wifi days), where I had to sit with myself in silence and in shock and contemplate what had just happened to my life.

My dad was a huge part of my life, we had our issues of course, but he was one of my favorite people. 

It feels like there is nothing that can prepare you for events such as these, but I’ve learned so much stemming from that day close to 11 years ago, on loss, grief, acceptance, growth, rage, and a whole slew of emotions. I’ve been a witness to its process. It’s probably been my biggest teacher.

So when I watched this TV show recently, and witnessed this loss again, it took me back to that moment on the plane, and it got me thinking. Tragedy is everywhere, and it feels insurmountable when it’s happening. Losses can rock us to our core, bring us to our knees, and immediately change the courses of our lives. There’s no way around it.

So I asked myself, what would I have wished I had known before life took it’s turn?

This is what I came up with:

Life is fragile. It sounds cliche but when it happens to you, you know that in any moment life can go upside down. Though much easier to do in retrospect, try to take in and savor the moments of your life that are unfolding right now.

Me and my dad (circa 1987)

Life is a gift. This really puts a lot into perspective for me. I find the pettiness and shallowness of ordinary life falls away when I remember that it is a blessing to be alive, especially with loved ones surrounding me.

Life is messy. It’s silly to expect every day to be rainbows and butterflies. The bad isn’t necessarily bad. It’s preparation. Take each hit and learn from it, you never know the value it will bring you in the future.

Life has purpose. Every moment is brought to us for a reason. We are living our own unique lives on purpose. Our stories are precious and our paths are unchartered.

Life is unpredictable. We just don’t know when life will swoop us up and change our course, so be present, be gracious, be passionate, and be grateful. Life is ever changing, this moment never stays the same.

After writing all this down, I then thought it might be nice to give you a little bonus! 

It’s great to have the lessons before, but it’s also really helpful to know the biggest lessons learned after too.

There are no rules to heartbreak. You don’t have to follow anyone’s mold of how to cope. Allow yourself to feel in your own time, space, and pace.

The new normal is uncomfortable. When managing a loss it’s very uncomfortable because there is something in your life that is missing, that can’t return. It’s a new normal. Be gentle with yourself and you slowly acquaint yourself with life as it is now.

Reflect back, but don’t live there. I can’t tell you how many times I’ve relived moments with my dad. Sometimes it feels very torturous, sometimes cathartic. Allow yourself to take in the memories, but try not to live there. Hold close to what has happened, but be present in the now.

Don’t compare yourself to anyone else’s journey. There are times that I have downplayed my own heartbreak because in my mind it wasn’t “tragic enough.” Whatever that means. If you’re going through something that’s difficult for you, it’s exactly that. Difficult for you. It doesn’t matter the degree of difficulty. Comparison in heartbreak is a game that no one wins.

Allow yourself to feel. After my dad died I was really an emotional mess. I was young and going through a lot and had a lot of emotions. Sometimes I would get down on myself for “not being over it yet.” I vividly remember someone close to me saying that I get a whole year after he died to just cope. That brought me a sense of relief in the moment, but when that year passed I thought to myself, “Does this mean I all of a sudden have to act as if I’m okay”? The truth is the feelings are always just below the surface, even now, and I no longer try to push them away. When they come, I feel them, but I don’t let them consume me.

Get help as often as needed. Having a trusted team of support is crucial. I would not be a functioning human if it wasn’t for my family, my counselors, my therapists, my coaches, and my true friends. And I have no problem being vulnerable enough to ask for their help, when I need it. Even now. This also goes for outside the times of crisis, but especially true in these circumstances.

The last birthday that I was able to celebrate with my dad (2006).

Cultivate a new relationship on your own terms. It wouldn’t be a Peaceful Mind Peaceful Life blog without a little bit of woo. One of the most comforting aspects of losing a loved one is the ability to cultivate a relationship even after they’ve passed. I still talk to my dad, I ask for signs from him. We have a new relationship now, and it’s absolutely perfect. He is my cheerleader on the other side, and he helps me in so many ways. So if you’ve lost someone, you can miss their physicality, but remember you can still have them in spirit.

Phew! I told you this one would be a doozy! I really hope that any of you who have experienced a loss or something of this nature finds some sort of comfort from this blog. Please remember that this is all my own personal experience and not meant to be an all-encompassing “how-to” but simply my take on it all.
xo
Michelle

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Michelle Maros,
Peaceful Mind Peaceful Life

Do you crave a few moments of gentle reading? 

The Condolence Coach confesses... I was tired of reflexively clicking on one or two news sites only to scroll through a sea of stories about humans behaving badly! With a simple keyword search, I discovered the antidote to trashy news. Read more gentle wisdom to "make your everyday life an inspired life" at  Peaceful Mind Peaceful Life.org

To learn more about supporting a grieving teen:
Condolence to Teens

Share this story...
and Thank you for caring!

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.

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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.

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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!

Condolence when you do not know the deceased

Expressing sympathy when you do not know the deceased

It happens so often: a co-worker, a friend or neighbor loses a loved one--someone you have never met. In fact, the extent of your awareness may range from "mom's in assisted living," to a complete void of personal information. What can you possibly say about someone you know little about? Let's take a look in my book...

 Words for when there are No Words, Writing a Memorable Condolence Note

The suggested condolence writing principle is to Find a common ground and stand together.  Begin with some information gathering; it is okay to ask:

• What is his/her name? How old is he/she?

If a brief conversation is possible, you can ask for more life details:

• What kind of work did he/she do?
• Did he/she have siblings or children?

With this information, you may begin to do some life comparison; what are those fields of common ground? In the basic news of the death such as "Jenny's mother died," you immediately learn the relationship, which can trigger your own thoughts on having and/or grieving a mother.

Another piece of common ground is memories. Everyone has them; every relationship and experience creates them. Though you do not know the deceased, you can invite your co-worker to reflect on memories and discover their comfort. After a death, memories can flow in from different seas of life--the happy and the regretful. Acknowledging basic truths like purpose and life contribution, love, legacy--are ways to honor the deceased without intruding.

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Let me tell you about a recent experience where I did not know the deceased

The brother of a friend had died, out of state. I learned of the death while trying to make social plans; our friend would be back East for a couple weeks to attend the memorial service and catch up with extended family. In order to personalize my condolence, I asked for the brother's name and if he had children. I began recalling a visit we'd had at a local restaurant; chatting about our hometowns and early Midwestern lives, anecdotes were shared about growing up in large families. I remembered the chuckles and warm feelings shared, and knew these would be the essence of my note:  reminding my friend (addressed to husband and wife) of the warm adventures he enjoyed with "Marty." I also noted the continued importance of their role as aunt and uncle to the surviving adult children--how special that connection will be, even at a distance. Mentioning their aunt and uncle roles allowed me to express appreciation for "their side" of the relationship. Another way to do this could be to comment on their way of cherishing family history.

(Note: If you have had a personal experience facing the death of the same relative, you may share a brief comment on the impact of that type of loss, but do not make this note about you!) When our friend received the note, he phoned to thank me for the most memorable and comforting condolence he had ever read or received.

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Become familiar with my Key Comforts, which are described extensively in the book. These are tools for composing your note. Like opening your tool box to get the right size screwdriver, choose a few Key Comforts that fit the situation. They include:  Sharing the loss, sharing a well-known memory, gratitude for the deceased’s life, and appreciation for a quality of the survivor.

Thank you for caring!

The Brain Processes Facial Expressions- But what if they are fake?

Source: Pricelessparenting.com

How are you feeling?

I love this How are you feeling tool by pricelessparenting.com (it's a free printable chart!)  Several other mood assessment charts exist and are so helpful when children and others cannot put their feelings into words. 

But what happens when a child or adult learns how to fake an expression, to hide feelings? 

The Condolence Coach poses this question after reading a report about a study published in the April 19 issue of the Journal of Neuroscience by Ohio State University researchers. Seeking to locate the brain area where we translate and label someone else's facial expressions, test subjects were shown a thousand photographs of human facial expressions.

Study author, Aleix Martinez, a cognitive scientist and professor of electrical and computer engineering at Ohio State reported that:

 "Our brains decode facial expressions by adding up sets of key muscle movements in the face of the person we are looking at." He continued, "Humans use a very large number of facial expressions to convey emotion, other non-verbal communication signals and language." [Source: cbsnews.com April 20, 2016]

Learning to fake it

Heart Keys, acrylic on canvas,
 Suzy St. John

In my post What's the Big Hurry? Stop Pushing the Bereaved grieving men, women and teens reported feeling naked when baring emotions; they find the expectations of others, draining. The pressure to 'move on' is tremendous; in fact, deep grief six months after a death is considered to be a sign of mental illness! No wonder a grieving person quickly learns to mask feelings. An arsenal of euphemisms come out in response to that well-intentioned question:  "How are you?"

Faking it can include flat emotion that passes as disinterest. The Condolence Coach urges friends, family, and coworkers to assume pain continues.  Your "posterior superior temporal sulcus (pSTS)" [Source: cbsnews.com April 20, 2016] may be firing normally, but we're talking about a psycho-cultural cleverness rooted in basic human survival:  it will always win over a machine (the pSTS.) 

Filter the fake

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The simmer of ache, anger, anxiety, loneliness and emptiness continues in a grieving person, no matter what their face tells you. Here are some ideas on how to filter through the fake and deliver real care and comfort:

• It is not up to you to heal the grief.  But your note will be a balm and help in ways you may not know. Acknowledge that you cannot imagine what this loss feels like, but you recognize courage when you see it. There are documented health benefits to feeling cared about; a condolence note delivers comfort and often, hope, because it can be re-read in any hour of need. 

• Forget what you think you know about grief, including what you believe an expression is telling you. There are many myths about grief and rather than give advice, your friend or co-worker just needs you to listen.

• It is never too late to write a condolence note. Once while waiting for an oil change, I struck up a conversation with another customer and discovered she was related to a former employer. She informed me that one of his adult children had died the previous year. I found an address and sent him and his wife a note. There is a 'higher reason' this information reached you now. Use it!

• Anniversary notes are deeply appreciated. As I explained in my post When Little Birds Chirp, writing to the bereaved on the occasion of their loved one's birthday or death anniversary is not a painful reminder. 

• These principles apply to pet loss, too! Acknowledge the wonderful friendship but do not discuss a 'replacement pet'. 

    Thank you for caring!

What's the Big Hurry? Stop pushing the bereaved

"Lola copes"  - Author photo

In a 2013 survey by the online magazine, Slate, 8,000 men, women and late teens grieving the loss of someone close, were asked about numerous factors related to their experience.  93% of survey respondents noted:

"interacting with others is generally awkward at best, and painful and isolating at worst." 

It's akin to feeling naked in public or, a teen angst I can relate to--being seen during a really bad acne outbreak. Grief can be so raw, painful, and unpredictable in when it will flare up feverishly. Trying to fulfill "normal" responsibilities and the expectations of others is draining to the point of sometimes feeling hopeless or unhinged.

In journals on bereavement, in support groups and online forums, the grieving are distressed by the push to get over it. Slate survey respondents commented:

• "They would get tired of my sad mood and need to talk about it, and say I was 'wallowing' or I should move on." 
• "People are very supportive for the first couple of weeks, but then they move on. … It makes you feel guilty to continue to mourn when others are tired of dealing with it."

No wonder it's a lonely road 

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After a few encounters with friends, family, and co-workers' boredom, impatience, and jovial coaching, it feels safer to stay home, alone. Many people--but not all--find relief in peer support settings specific to their loss such as The Compassionate Friends, TAPS, for military families, or AfterGiving for grieving caregivers.

 In their analysis of the Slate survey findings, Dr. Leeat Granek, a critical health psychologist and grief researcher, and journalist/editor Meghan O'Rourke, returned to the medical branding of a grief journey that doesn't hurry up and press the Reset button on life:

"perhaps the most important finding in the data had to do with recovery from grief. Here, the answers suggested that loss takes longer to recover from than we typically imagine. More than one-quarter of our respondents reported that they never went back to feeling like themselves after their loss. Another quarter said they felt normal only "one to two years" after the loss."

Is grief a disease?

"This is of particular note since the fifth edition of the DSM (or Diagnostic and Statistical Manual of Mental Disorders) [which was due for 2013 release]...may propose that a mourner can be diagnosed with "complicated, pathological, or prolonged" grief if he or she is still grieving intensely six months after a loss.  from "What is grief really like?"

Granek and O'Rourke highlighted an important human variable: "What our respondents suggested (which rang true for us) was that for many mourners, recovering from a death of a loved one can take a year or several years. For others, "recovery" may never happen at all."

Thankfully, this label was squashed by public and professional outcry, but the waters are still muddy, and doctors remain on alert for 'disease' in their assessments of grieving individuals. In his editorial for PsycheCentral.com, "How the DSM-5 Got Grief, Bereavement Right," Dr.Ronald Pies defended,

"Clinical judgment may warrant deferring the diagnosis [of major depressive disorder, MDD] for a few weeks, in order to see whether the bereaved patient “bounces back” or worsens. Some patients will improve spontaneously, while others will need only a brief period of supportive counseling — not medication."

Can we please stop pushing the bereaved? 

The Condolence Coach reminds readers:

'Heart Keys' acrylic on canvas
 Suzy St. John 

• It is not up to you to heal the grief.  But your note will be a balm and help in ways you may not know. There are documented health benefits to feeling cared about; a condolence note delivers comfort and often, hope, because it can be re-read in any hour of need. 
• Forget what you think you know about grief. There are many myths about grief and rather than give advice, your friend or co-worker just needs you to listen.
• It is never too late to write a condolence note. Last month, waiting for an oil change, I struck up a conversation with another customer and discovered she was related to a former employer. She informed me that one of his adult children had died the previous year. I found an address and sent him and his wife a note. There is a 'higher reason' this information reached you now. Use it!
• Anniversary notes are deeply appreciated. As I explained in my post When Little Birds Chirp, writing to the bereaved on the occasion of their loved one's birthday or death anniversary is not a painful reminder. 
• These principles apply to pet loss, too! Acknowledge the wonderful friendship but do not discuss a 'replacement pet'. 

    Thank you for caring!

Ask the Rabbi: is the Holocaust beyond condolence?

When I was an innocent child of 15, a public school teacher suggested I read the memoir, Night by Elie Wiesel. 

He did so because I was curious about his Judaism. Reading about 15 year old Elie's loss of innocence in the Auschwitz-Birkenau complex tore the curtain off my own daydreaming girlhood.

Buckenwald concentration camp, 1945. Weisel lays in 2nd row, 7th from left. 
Photo taken (c) by Private H. Miller. (Army) - U.S. Defence Visual Information Center

Finishing the brutal narrative, I passed it on to my mother. She was glad to read it but expressed sorrow that I had. I went on to read many more survivor accounts.

Then last month, breakfasting with friends, I asked Meyer if he had any family still in Poland. "They are all gone," was his reply. It was not a happy tale of emigration; it was the Holocaust. I slumped and sighed. And later wondered:  what is the appropriate condolence response here? Should I write a note?

"It is a complicated situation."

[Source]

The first words of advice offered by Rabbi Aaron L. Starr, Director of Education and Youth at Congregation Shaarey Zedek, did not surprise me. But with remarkable insight, Rabbi Starr unraveled the sensitive topic.

"Your response may depend on the intimacy of the relationship between your acquaintance and their relative(s) who perished in the Holocaust. If they never knew the decedent, they probably have an intellectual response--rather than emotional. This would be similar to a family with relatives who died in the Civil War, or had a relative who was murdered; the mindset would be 'this is a piece of family history.'"

"In life, tragedies and joys mark our souls."

Rabbi Starr counseled that it is always wise to approach the incidence of a death with sensitivity and awareness. "We cannot judge others."  How survivors feel about a death--whether it occurred decades or days ago, is their personal business.

The phrase, "NEVER FORGET" often accompanies Holocaust exhibits, memorials and memoirs. Should that impassion our sympathy with humanitarian zeal? Should I consider a time-honored memorial tradition like planting a tree in Israel?

Photo by Ted Percival

"They may not be in mourning, and such a gesture would be unnecessary," replied Rabbi Starr. "Unlike someone losing a family member on 911 who, even after fourteen years, may very well still be grieving. This is why sensitivity and awareness should be your guide."

The Rabbi continued,"'Never Forget' is part of our Jewish ethos," Stories and memories are certainly a powerful means to 'never forget.' "You could ask the person you are speaking with: 'would you be willing to tell me more?'  That type of question gives them an out. Respect the yes or the no.  

The Condolence Coach feels that a simple note will be a caring gesture. Simple but sincere elements will:

• express respect
• extend a 'quiet' sympathy at this piece of their family history
• ask the question, 'would you tell me more about these family members, sometime?'

Thank you for caring!

Living with a Disability, Part 3: Enjoy Your Journey

This post is the third in a series that will explore attitudes and assumptions about disability.
1. People 'on the outside' (having no disability or no visible disability) make a lot of assumptions about disabilities.
2. But people have a disability in the context of  living real lives.

Why does the Condolence Coach care about this topic?  The loss of health precipitates significant changes in life. Even persons with disabilities from birth, can experience distress with grief-like emotions. It is stressful to live in a world designed for the 'able', a world that champions strength-speed-beauty. Gaining awareness is always enriching. Instead of not talking about the elephant-in-the-room, we can learn to compassionately co-exist--and support another aspect of human diversity.

Last Fall, I attended a forum, "Disability from the Inside: Conversations with Disabled Metro Detroiters."  It was hosted by photographer Patricia Lay-Dorsey as she neared the close of her Detroit exhibit, Falling Into Place: Self Portraits,  Since that evening, I have had marvelous conversations with many participants.

Meet:

Lawrence Dilworth, Jr. aka 'Leaping Larry'. Retrieving a business card from the pack on his lap, I watch the enthusiasm of his life motto:  Live, Love, Laugh, and Learn. Life is short so enjoy the journey! 

Now 70, Larry never attends a pity party--he is way too busy! Born June 25,1944 with spina bifida, he has used a wheelchair for mobility since 1982. "I call my wheelchair a CHARIOT OF FREEDOM."


Larry continues:  "Living is not an easy ride. I try my best to see the POSITIVE side. I have done more things from a wheelchair than most people walking and never let my so-called "disability" stop me from things I want to do. I have completed 2 marathons, water skied, snow skied, hot air ballooned and skydived. I never know what adventure is next on my life journey." 

Larry destroys stereotypes!

"Photography and art are my passion; as is anything creative or filled with adventure."

Larry has a B.S. degree in Radio and TV Broadcasting from Siena Heights University in Adrian, Michigan. He currently takes art classes at the University of Michigan, Dearborn campus. Larry combines his love of music and photography by attending festivals. "I have photographed the Detroit Jazz Fest for over 25 years."  

A Display of Passion

Larry's work will be displayed in late February, 2015 at Eric's I've Been Framed Shop & Gallery located in Detroit, Michigan. Check back to the shop's link for the announcement!

"I have received The Spirit Of Detroit Award from the Detroit City Council, and photographic awards. I've been featured on local radio and TV shows in Detroit. My photography has been published in The Michigan Chronicle, The Michigan Citizen, The Native Detroiter. As an actor, I have been cast in local independent films and worked in many roles as an extra in Hollywood films and a television series." 

Larry is also a member of WOW, Warriors on Wheels of Metro Detroit. We will meet WOW leaders in the next part of this series.

Life is full of challenges

How we face them

Is what makes us who we are

and

Namaste ("My spirit honors yours.")

Leaping Larry

What can readers take away from meeting Leaping Larry?  

Respect that the people around you are all on a journey, and living with DIF-ABILITIES. Put your judgements and biases on the shelf and get busy facing your own challenges and living your life to its fullest potential.

Readers:  catch up on the other posts in this series!

Living with a Disability, Part 1: Debunking Stereotypes 
Living with a Disability, Part 2: Getting By or Growing Great? 

You will also want to visit the helpful document:
recommended disability-related terminology

Thank you for caring!

Living with a Disability, Part 2: Getting By or Growing Great?

Unconditional Blooms!
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This post is the second in a series that will explore attitudes and assumptions about disability.
1. People 'on the outside' (having no disability or no visible disability) make a lot of assumptions about disabilities.
2. But people have a disability in the context of  living real lives.

Why does the Condolence Coach care about this topic?  The loss of health precipitates significant changes in life. Even persons with disabilities from birth, can experience distress with grief-like emotions. It is stressful to live in a world designed for the 'able', a world that champions strength-speed-beauty. Gaining awareness is always enriching. Instead of not talking about the elephant-in-the-room, we can learn to compassionately co-exist--and support another aspect of human diversity.

Last Fall, I attended a forum, "Disability from the Inside: Conversations with Disabled Metro Detroiters."  It was hosted by photographer Patricia Lay-Dorsey as she neared the close of her Detroit exhibit, Falling Into Place: Self Portraits,  Since that evening, I have had marvelous conversations with many participants.

Meet Pauline Loewenhardt who recovered from childhood polio, but carries vivid memories of those years. Her memoir first appeared in MICHIGAN POLIO PERSPECTIVES, a publication of the Michigan Polio Network, Inc. 

MY POLIO STORY

By Pauline Loewenhardt

In 1944, when I was ten years old, I contracted polio, an event that would change my life.

Until that summer, I was the oldest of four children and played in the neighborhood with the other kids and watched over my two younger brothers and sister.  My ordinary life and the war were forgotten as I struggled to survive this experience. As a child, I always loved visiting my older half-sister Margot’s house. She mar- ried at age 17, only a few years after coming to this country.  She lived with her husband, Fred and in- laws Hank and Madelyn Curry, in a modest three bedroom, red-brick Tudor home on Detroit’s northwest side.  I thought it was very grand compared to our smaller and much shabbier rented frame house in the inner city.

On this day, however, I sat disconsolately on the staircase wishing I could go home.  I felt sick and my throat was still very sore from my tonsillectomy a few days before.  I was sent to Margot’s house to recuperate from my operation but I wanted my Mama. Finally, after I languished without improvement for several more days, Margot called Mama and told her I needed to see the doctor.  She told her my temperature was 103 degrees and I couldn’t eat but a few small bites. Finally even that was too painful.  Vernor’s ginger ale, always a treat when I was ill, now burned my throat and I could no longer swallow anything but sips of water.

At last I was home in my small room, in the brown iron bed I shared with my sister, Lucy. I don’t re- member the ride home or who drove me. Probably my father came to pick me up in our old black 1934 Chevy.  Our family doctor, Dr. George Sippola, came to the house.  His tall, thin form loomed over my bed and his deep voice was solemn as he gave my mother a bottle of sulfa pills.  “Give her two of these every six hours.”  I could not swallow the enormous pills though I tried.  The bitter taste lingered in my mouth long after I spit out the remains.  Soon I was unable to move my arms and legs and my neck was very stiff when the doctor tried to raise my head from the pillow.

Later that day two men dressed in white carried me out of the house on a stretcher to the waiting ambulance.  I was on my way to Herman Kiefer Hospital for treatment of polio, which by then was raging throughout the country in one of the most severe epidemics of that disease.

I remember the somber faces of my siblings and neighbors as they watched.  I was too sick to be frightened or to realize the gravity of what had happened.  All of that would come much later. I would not return to my home for eight months.

A yellow quarantine sign was placed on the front door of our house and the family was not allowed to go anywhere for two weeks. No one would come near them for a long time.

Generalized fear of polio among the entire population was endemic.  

Children were kept out of swimming pools and movie theaters.  I did not know until later that Margot was pregnant with her first child.  However, she did not contract polio and my nephew, John, was born in November of that year.  He was perfectly healthy.

I was placed in an isolation room so my parents could see me only through a window.  I saw my mother’s tears as she stood there but I didn’t cry.  I remember that I was very hot and I wanted to turn on my side and curl up in a ball.  Instead, I had to lie perfectly flat with no pillow on a very hard mattress.  My feet were supported by a wooden board that held them upright.  I only cried when they put the needle in my arm twice a day to give me intravenous fluids. I was unable to eat or talk for those first few weeks. My only entertainment was looking out of the window at the sky.  I imagined wonderful creatures in the cloud formations. I felt grateful for the window. I realized only much later that the iron lung next to my bed was there in case I stopped breathing.  Fortunately I did not. However, I disliked being suctioned.

I don’t remember feeling frightened only frustrated at being in bed and subjected to treatments that were not very comfortable.  The treatment for polio was hot wool packs applied to arms, legs, back and chest twice a day.  This treatment, invented by Sister Kenny, was called the “Kenny Method.”  The sounds of the wringer washing machines being pushed down the hall announced the beginning of the application of hot moist wool packs. They were applied, then covered with sheets of oilcloth and dry blankets to keep the heat in.  They were left on for 20 to 30 minutes. The washing machines were used to heat and wring out the pieces of wool so they could be placed while still steaming on our limbs.  This prevented contracted muscles from becoming deformed.

The physical therapist came to my bed every day and stretched and exercised my tight muscles. I didn’t like her because she patronized me and wouldn’t answer my many questions.  One day she said to me, “I’ve been working out in the field this morning. You probably think I was out picking flowers.” But I knew exactly what she meant by “working in the field” and felt insulted by her implication.

At that moment I determined that I would become a nurse so I would have answers to all my questions.

Gradually I recovered some movement and began to sit up and eat.  I choked on a green bean during my first meal and coughed it out so hard that it flew across the room.  I was so happy that I could eat and drink, as I no longer needed the intravenous solutions every day.

Soon it was time for the next stop on this journey. I went by ambulance to Sigma Gamma Convalescent Center in Mt Clemens.  There I continued physical therapy and learned to walk again with the help of a brace and crutches.  My parents and siblings came to visit on weekends.

I was in a large room with other boys and girls and sometimes we played practical jokes on the nurses. Somehow we managed to put a bag of water where it would fall on whoever walked in the door. Someone tall who could walk easily, must have placed it there.  I think it was the janitor who was a jolly fellow who sang to us and told us jokes.  The opera, Figaro, was part of his repertoire.

One evening I got out of bed by myself to get a glass of water.  I was sure I could do it but I slipped in some water and sprained my ankle.  Usually I followed all the rules but I wanted to try. 

Pauline had determination

As polio survivors we were told that if we tried hard enough we could bring back movement in paralyzed muscles.

I was allowed to go home for a Christmas vacation, which was wonderful, but I remember vividly that I was again in an isolation room upon my return. The center was in the country and each night mice skittered and squealed around my room.  They terrorized me and I couldn’t wait to get back with all the other boys and girls.

A teacher came to the center to make sure we kept up our studies.  When I finally went home in March of 1945, I was enrolled in Oakman School in Detroit, a special school for crippled children.  A big yellow school bus picked me up every day. Fortunately, I did not fall behind in my studies through all of this.  I stayed in that school until 8th grade.

In 1945 I had surgery on my left ankle to stabilize it and prevent foot-drop.  After that I no longer wore the left AFO and began to feel more normal though I still walked with a limp.  I was determined not to let the polio stop me from doing whatever I wanted to do. I learned to ride a two wheeled bike sometime in my twelfth year.  I walked a mile to Mackenzie High School when I entered the ninth grade.  I became a reporter on the school newspaper and joined the Future Nurses Club.

Pauline recovers

Vocational rehabilitation paid all the expenses for my four year college education.  I graduated from Mercy College of Detroit in 1955 with my bachelors degree in nursing.  I finally retired from nursing in 2008.  I had a wonderful and challenging career in nursing and never regretted my decision to become a nurse.  I earned a masters degree in nursing in 1973 and worked as a nursing instructor or administrator in later years.

I married in 1957 and had three children. They are now in their late 40’s and 50’s. I have four wonderful grandchildren.  I became an avid gardener.  I learned to downhill ski and eventually, to cross-country ski.  Now I snowshoe when we have enough snow. 

Those days are becoming rare.  In the mid-nineties post-polio syndrome crept up on me. 

I was still working full time and exercising several times a week. I began having pain and fatigue that just would not go away.  Finally, after a few visits to a polio clinic in Tampa, Florida, where I lived, I was advised that I needed to again wear an AFO on my left leg.

This was a blow but I adjusted to it.  I have learned to manage the fatigue and pain.

Now I am retired but still active.  I wear a DBS brace on my left leg. Dynamicbracingsolutions.com

I learned about this unique brace from an article in the Michigan Polio Network News.  It was and continues to be a learning process. I have had my DBS now for two and a half years.  I use a forearm crutch for walking any distance outdoors or indoors.  I also have a scooter for those occasions when the distance is too great to walk. 

When traveling by air, I ask for a wheelchair when I make my reservation.  I have found this to be a big help getting through security and to travel the long distances to the gates.  I have relatives in the Netherlands and have traveled to Europe several times. 

My days of walking all over London or Paris are probably over, but there are still many wonderful experiences waiting as I enter my eighty first year.

+++

Pauline Loewenhardt's memoir first appeared in MICHIGAN POLIO PERSPECTIVES, Volume 28, Number 4, Winter 2013. This is a publication of the MICHIGAN POLIO NETWORK, INC.  The Michigan Polio Network, Inc. is a tax Exempt non-profit organization with 501 (c) (3) status. They may be contacted at MICHIGAN POLIO NETWORK, INC.  1156 Avon Manor Road Rochester Hills, MI 48307-5415 or librarian@michiganpolionetwork.com

After the forum, Disability from the Inside: Conversations with Disabled Metro Detroiters, I had a more in-depth conversation with Pauline. She told me more about post polio syndrome rearing its head in her life in the mid-1990's.

"Before that, I really had no problems and could do just about anything I wanted to do. But I began having symptoms of increased pain, weakness and fatigue. After seeing several different doctors, I was again given a left ankle foot brace (AFO) to wear. I had not worn a brace since age 12."  

Adding to the health stress, Pauline had just ended a sixteen year relationship with her partner and, her beloved fourteen-year old yellow labrador died. "It was all too much," Pauline shared, "and I became very depressed."

Pauline celebrates a milestone

At any age, find your purpose!

Pauline sought supportive help to absorb the changes and decided, at the age of 66, that it was time to retire from a very demanding, full-time nursing job at a Veteran's Hospital in Florida. She returned to Michigan in 2003,  where her two sons and four grandchildren live. Now writing her second memoir, She exemplifies the importance of staying connected and involved with others. 

"I started over as I was celebrating my 70th birthday in January of 2004. It was difficult but I was full of enthusiasm and energy again." 

"The Ann Arbor Unitarian Universalist Church was important in beginning my new life and remains a place of fellowship and compassion for me. The people there are part of my extended family. Several other groups provide similar deep friendships.Writing also has become one of my most important activities. I am working on a memoir and meet weekly with a writer's group. I get up at 6:00 a.m. every morning to write for a couple of hours. Later in the day I don't have energy for writing. I have to carefully manage my time and activities so that I don't run out of energy. The most difficult things to manage are problems in speaking and swallowing as well as mobility issues. The speech and swallowing problems make it difficult to enjoy meals with friends in a noisy restaurant. I choose days and times carefully and can still enjoy meals with friends. I still love to garden and kayak. I nap when I need to do that. I ask for help when necessary."

Pauline is active in a church certification pilot program to develop increased awareness on the part of everyone in the congregation about the needs of persons with various types of disabilities, including those that are visible and invisible.

"Accessibility means elimination of barriers including physical, communication, attitudinal and other barriers and to replace them with attitudes of welcome, support and inclusivity."

"It is a three year project being carried out at ten Unitarian churches across the country. The Ann Arbor UU church is one of the ten. We are just going into the second year. As a result of the increased awareness, the accessibility team will develop strategies and solutions to problems as they are identified."

The first step in the process was an in-depth assessment of all areas of the grounds, buildings and policies related to accessibility. The Field Test Coordinator is Els R. Nieuwenhuijsen, PhD, MPH, OTR/L, an expert in the field of holistic approaches toward disability in communities. 

Follow this link to read Dr. Nieuwenhuijsen's table of Recommended Disability-Related Terminology. 

Snowy January is upon us. The Coach is wondering how difficult it must be for persons using wheeled mobility, to navigate snowy sidewalks and parking lots. Property owners and managers who think, 'oh it'll melt; I don't want to bother shoveling or plowing,' should spend some time in a wheel chair. Pauline inspires us all to look a our surroundings and consider ways in which they may be unwelcoming to a person with a disability:

"For example, one member of the team suggested installing additional handrails for people going up the three steps to the altar. Currently, if someone cannot walk up three steps unaided, they must walk over to the side where there is now a railing. Various programs have been and will continue to be presented to the congregation, with the goal of enhanced awareness of staff and congregants. The Disability Panel discussion I coordinated last spring is an example of this effort, as is a recent presentation on depression."

 "I am living life to the fullest and I am grateful for all my blessings."

Readers, don't miss past and upcoming posts about Living with a Disability:

Living with a Disability, Part 1: Debunking Stereotypes 
Living with a Disability, Part 3: Enjoy Your Journey

Thank you for caring!