maitri

maitri …. unconditional friendship with one’s self.

“The question is how do you relate when things are uncomfortable? That’s really the question.”   Pema Chodron

One of my favorite teachers explains the Buddhist concept of maitri. While I do not claim to be a Buddhist, I have found their practices/teachings to be most helpful in managing my daily challenges. Enjoy!

freedom to be

Whatever your circumstances, you are free to pen your poem, dance your dance, express the depths of your heart.

Jack Kornfield, No Time Like the Present

Jack Kornfield’s quote above is the inspiration for this post. The meditation group that I participate in is studying his book, No Time Like the Present; Finding Freedom, Love and Joy Right Where You Are. It is from a chapter he wrote on the importance of creativity.

I was drawn to this quote because I struggle, at times, with creativity. More specifically, giving myself permission (or approval) to be creative. To put my ideas on paper (or to blog) without self-censure or judgment that I am not good enough, perfect enough….. worthy. Or to post a picture of my latest quilt on-line because it is not “perfect.”

There is a lot to unpack in my two opening paragraphs… and I am acutely aware of how these beliefs about my self are limiting. They prevent me from enjoying the “freedom to be” that Kornfield describes in his book. I share them here because I know that I am not alone. So many of us struggle with limiting beliefs that prevent us from living our full potential.

Sigh…

But this blog post is not meant to be a deep diveor a book. Rather, I would just like to offer some thoughts about the freedom to be creative, to share our gifts freely those around us or the world. How to feel the fear and “do it anyway.” To not hold back.

For me, that means that when I feel inspired by a quote like the one above or have an idea about a blog post to just do it. (Nike made have gotten this one right). Even as I write this the little voice in my head is telling me all sorts of things like… you are not making sense.. or how can this be helpful? Can you relate?

Here’s the deal.

We are born to create and we create every day. We create a look or style in the way that we dress, act or move. We create health when we nourish and care for our bodies. We create joy when we share our talents through our work or activities that we are passionate about. We create a life in the way that we love.

Creativity and creative expression may just be the key to the freedom to be who we are that we all seek. Hmmm.

what I learned about dying from my family

My mother passed away this past February from dementia. My father passed away from Frontotemporal Dementia in 2014.

My brother passed away from cancer this past summer and my mother-in-law also died after an extended illness two years ago.

There have been many deaths in my family… too many…

I first witnessed death over forty years ago at the bedside of my grandfather. With my grandmother at his side, he slowly slipped away. She kissed him good-bye and I was in awe at the solemnity and beauty of the moment. It felt like the room was filled with love. I hold this precious memory in my heart to this day.

Lesson #1: Do not be afraid. The process of dying and death, while not always pleasant, brings the end of suffering and offers peace. Witnessing a death or holding in love a beloved family member or loved one (or maybe even the stranger) is the greatest gift to give and receive.

As my father’s time of death drew near, it was a privilege to be able to spend the entire last week with him and offer support to my stepmother. He had decided not to eat or drink. It had been many months since he recognized my brothers and me. At the hour of his death, he was surrounded by family, his body wasted and features barely recognizable.

Lesson #2: The process of dying and death can be and often is messy. My only experience thus far has been with dementia and cancer, both of which ravage the body and are painful. I will never forget how small he looked like lying on the hospital bed. The man I worshipped my whole life reduced to a skin and bones absent life force. 

His body and brain were donated to the Mayo Clinic as part of ongoing research. He had left behind no instructions other than the place of burial and desire to be cremated. The memorial service came together thanks to the funeral home, however settling the estate was entirely different. It was a mess…..

Lesson #3: Following my father’s death, my husband and I updated our wills, named our personal representative and Healthcare/Financial POAs should anything happen. Our accounts, insurance policies and important passwords have all been recorded. The only thing left for my husband and me to do is identify how we want to be cared for if we are unable to care for ourselves or each other. Our affairs are mostly in order.

My youngest brother was diagnosed with cholangiocarcinoma (bile duct cancer) last Spring. It was difficult and painful to endure and to witness. He had a strong desire to live, and even though the prognosis was not great, the Mayo doctors tried their best. After several surgeries, he was sent home with palliative care.

And still, he fought. Refusing to “give up,” telling his grandchildren that he was fighting the “monster.”  The monster won.

I think a lot about his death and the collective view that we “need to fight” death and wonder if, as a society, we have that all wrong. The wise Buddha offers these Five Recollections:

  1. I am of the nature to grow old; there is no way to escape growing old.
  2. I am of the nature to have ill health; there is no way to escape having ill health.
  3. I am of the nature to die; there is no way to escape death.
  4. All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.
  5. My deeds are my closest companions. I am the beneficiary of my deeds. My deeds are the ground on which I stand.    (Upajjhatthana Sutta)

We all must leave this human body some time. What if we just accepted “what is” without fighting it and approached illness with love and compassion towards our body/being? Rather than “fighting the monster” we befriend it? Death may not be prevented or even delayed but entered from a place of wholeness, with dignity and grace.

Would this acceptance allow for healing of the emotional and spiritual body… and if we are lucky – the physical body, too? I wonder…….

Lesson #4: Resolve issues. True confession, I have some unresolved issues with my brother and am working towards forgiveness. I regret not doing it when he was alive. My excuse was that there was always someone around but that really is just an excuse when really I was afraid. I was able to visit him the week before he died and tell him I loved him for which I am truly grateful. I think it would have been easier for us to work through our issues together instead I have added to my grief. I am working towards making sure that I have no regrets in my most meaningful relationships… I want no regrets when my time comes.

My mother’s death was perhaps the most difficult of all…. maybe because it was the last and culmination but also because I was not present. We had planned a vacation over a year ago and when it became clear that her time was drawing near made the decision to not cancel. I have no regrets about that as I have spent time with her every month and with each transition from home, assisted living and then to memory care. The bulk of her care was provided by my brothers, for which I am eternally grateful.

My mother was experiencing a great deal of physical pain, and I suspect, emotional pain as well, her last few months. She, too, lost her speech and had difficulty communicating her discomfort, often acting out. I’d like to think that she would say raising a family was her best years but I really don’t know for sure about that. She had a difficult childhood and in later years struggled with mental illness.

I loved her deeply. She was my mother but was often detached and rarely shared her feelings. Did I really know her? Did I see her? Mother-daughter relationships can be so complicated…

Even though we have not been able to communicate with words her eyes always lit up when I came to visit and she held me tight when it was time to leave. Even with dementia, love was there… always!

Lesson #5: Love does not stop with death. I miss my grandparents, parents, and brother… and feel their love each memory. My wish is to be remembered for living and loving well.

Lesson #6: The last lesson that I learned and perhaps the most important is related to #3. We do have a choice about how we want to die. This relates to making sure to update a Living Will and if you don’t have one, get one. With the history of dementia in my family, it is especially important. After witnessing the death of both parents with dementia, if having to choose between dying from cancer (by refusing treatment) or dementia… I choose cancer. It is quicker. Morbid… I know. 

note to self

It has been a year and a half since I posted anything here.

Note to self.

Note to self.... image

Write more.

That’s it. That is all I have to say today…. or is it?

I offer one excuse… I have not felt like I had anything to share that would be of value.

That may or may not be true.

This post is one of introspection and it challenges my underlying belief that I have nothing to share. My life, after all, is quite ordinary…. and unplanned. What the #@&* do I know about anything?

So, this “note to self” is an invitation to examine to belief that I have nothing to share, that no one is interested in what I have to say, and that I really don’t know anything about anything anyway.

Byron Katie would ask, “Is that true?” “Can you absolutely know that it’s true?” “What happens when I believe the thought?” and most importantly – “Who would I be without the thought?” I will begin there…..

I don’t know it to be true that I have nothing of interest to share or that I don’t know anything worth sharing. When I believe that I hide. I don’t post. I don’t share and feed the underlying belief that I am not good enough…..etc., etc., etc. (A subject for another post).

When I consider the possibilities of who I would be or what I might do if I let go of the thought that I am not good enough I am not afraid to put myself out there into cyberspace.

That said, the purpose of this post is not to garner comments that refute or confirm this faulty thinking but rather to invite you to join me in challenging underlying beliefs that hold my be holding you back, too.

And, I will write… it appears that I do have something to share after all. Stay tuned!

the 3 p’s

Yesterday(May 31, 2017) was World MS Day and we were invited to share a tip that we found helpful in living with MS. I had intended this post for yesterday but my website was down.

So…. better late than never…. here is my tip for living with MS or any chronic illness. I call it my 3 P’s but first a bit of back story.

When I was working as an occupational therapist I used to teach my patients with health issues about the 3 P’s….. and since my diagnosis I have had to put them into practice. Surprise… surprise!

The 3 P’s are planning, pacing, and prioritizing.

Planning

Never a great planner, it has become a necessity. I plan my day, week…and even trips to the bathroom.  It is true that things don’t always go as planned but overall planning helps me to manage my stress and my fatigue.  (Yes, it is closely related to pacing). For example, I schedule appointments and teach my classes at LaVita on Monday, Tuesday, and Wednesdays keeping the rest of the week free for the activities I most enjoy or to rest, if needed. It also allows me time to visit my mother  at least once a month, have lunch with a friend, or spend a day sewing or reading.

On weeks that my schedule gets off, I am easily overwhelmed. This is a new experience for me as I was able to go… go… go… in my life before MS, which relates to the second P, pacing.

Pacing

Pacing has become my new normal when it comes to meal prep, cleaning, or exercising. For every minute spent “working” I find that I need at least 2 minutes to recover. Allowing a slower pace or rest periods has allowed me to manage the fatigue that is so common in autoimmune diseases like MS or RA (rheumatoid arthritis).

Because of dietary restrictions, it is necessary for me to cook all of my meals at home though we do manage to eat out at least one night per week. Batch cooking helps me to stay on program and allows me to just pull something out of the refrigerator or freezer for breakfast or lunch. It usually exhausts me though and I rest for at least an hour after I have all the food prepared…. and sometimes even in the middle. Kitchen clean up has to wait until I have rested enough to continue.

Allowing extra time to complete tasks or breaking them down into smaller chunks is helpful, too.

Prioritizing

The third P, prioritizing, is also closely related to planning and pacing…. and it might be the most important of the three. I believe that successful prioritizing is based on personal values. In other words, spending time reflecting upon what is most important is required.

The schedule I described above allows me to spend my time participating in activities that I value… like spending time with my mother, teaching, connecting with others and being creative. My values are spending time with family, connecting with others, creativity, and sharing information. (Really these are just a few as there are many more).

Another equally important aspect of prioritizing is the ability to say no. I have been approached several times to teach more classes or take on a project and while it is consistent with my values (or not) I know that my current schedule works for me. My priorities are always subject to review and change over time. For now, sticking with my schedule brings meaning and depth to my life with MS (#LifewithMS). That’s a good thing.

Planning, pacing and prioritizing has become a part of my life that I never anticipated 20 years ago when I was working as a therapist. I no longer pay lip service to them. They are tools that I use everyday. Perhaps you will find them useful, too.

 

tough days

Today is a tough day.

My body aches, my head feels dull, and  I am more than tired…..

I am exhausted even though I spent a wonderful weekend away with my husband as we celebrated our 40th wedding anniversary. I celebrated by “throwing caution to the wind” and eating whatever I wanted… pastries from the Door County Bakery, ribs, and a decadent dessert. Yep…. I ate gluten. Lots of it….

No wonder my body hurts.

It doesn’t help that emotionally I am beating myself up. My inner dialogue is cruel and unforgiving. “What difference does any of this (wellness) make anyway?  I am doomed no matter what I do. I feel sorry for myself… I wallow … and tears rise up from the core of my being. The emotional pain is worse than the physical pain.

My attempts at self-compassion are not successful this morning. I need to stay right here… in the hurt, anger, frustration, and fear. Today… or just for the next hour or two…. my life sucks. I am tired of trying. I hate food restrictions. I want my life to be different.

I want to be able to walk without a limp or the use of a cane or walker.  I want to stride with ease, even run a bit. I want to dance without holding on to someone. I want my brain to work the way it used to. I am tired of reading the same paragraph five times to grasp its full meaning. I want to remember people’s names. I want… I want.. I want….

Today, I want my life to be different and I imagine that perhaps others are feeling the same way, too.  There is comfort in knowing that I am not alone.

In this moment, I need to be able to express my feelings. The sobbing has stopped and there is a new lightness. I must admit that I am feeling better just having done so.

Oh my goodness….. I  just gave myself self-compassion.

Kristen Neff  teaches self-compassion and mindfulness.  I was first introduced to her work several years ago and then re-introduced recently via the six month Course in Mindful Living that I am taking.

“Self-compassion involves acting the same way towards yourself when you are having a difficult time, fail, or notice something you don’t like about yourself. Instead of just ignoring your pain with a “stiff upper lip” mentality, you stop to tell yourself “this is really difficult right now,” how can I comfort and care for myself in this moment?”

Her three step process goes something like this:

  1. Acknowledge that this is a difficult moment.  (This is a tough day)
  2. In life, there are difficult moments, I am not alone. (I am not the only one who has a tough day or who wants their life to be different).
  3. What do I need? (I need to share my heartache, frustration, fear…. etc.).

I feel better…. and if no one ever reads this, I am fine with that. There may be more moments of regret as I go about my day… it is after all a tough day and I am fine with that, too. It is comforting to know that self-compassion works and that as always…. this too shall pass.

May YOUR “tough days” be met with self-compassion. Namaste’

Image: Copyright: highwaystarz / 123RF Stock Photo

are we too connected?

I love this video and just had to share it…. mostly because I recognize the truth of what she is saying. As one who loves technology, I must confess that it has become an addiction.

This video is part of this week’s lesson in a course that I am taking [A Course in Mindful Living] on living mindfully. We are just finishing our 4th month and the timing couldn’t be more perfect for me.

We use conversation with each other to learn how to have conversations with ourselves.While I haven’t reached the point that I sleep with my phone, I do spend a great deal of time surfing or checking my email throughout the day. Instead of using technology as a tool to keep me connected to the world outside my home, it has become my world…. and I don’t think that is a good thing.

Not only am I sitting too much, but I am not getting anything done… like sewing or reading…. or especially housework. More importantly, though, as Ms.Turkle described, I am connecting less with others – in person.

Working as a therapist I had lots of opportunities for conversation. I still do when I teach or take part in classes at the wellness center.  But I wonder if that is really enough …

So, I must ask myself…. am I too connected to technology? Is there enough conversation in my life? Is it meaningful?  Am I able to be truly present with another? How well do I know them?

Many, many questions arise as I reflect upon my use of technology.  Am I using technology as a tool or has it become a distraction, pulling me away from connecting with others … or more importantly, getting to know myself.

How about you?

what is frontal temporal dementia?

 

Viewing this via email? Click here to view the video.

I attended a family seminar on Frontal Temporal Dementia (FTD) and Primary Progressive Aphasia (PPA) yesterday at the Mayo Clinic in Rochester, MN. It was of particular interest to me as my family carries the familial gene for FTD. I learned a lot, probably more than I really wanted to know.

Because FTD has a different presentation (onset and symptoms) than the more commonly known Alzheimer’s Dementia, I thought it might be helpful to describe it.

FTD is part of a larger cluster of neurodegenerative diseases  that includes ALS (Lou Gehrig’s Disease), PPA, and Corticobasal Syndrome, to name a few. This cluster of diseases is called Frontal Temporal Lobar Degeneration or FTLD. Diagnosis is based on a person’s symptoms, brain scans and genetic testing… and most accurately through autopsy.

Even within the FTD group there is variability with the most common being the behavioral variant frontal temporal dementia or bvFTD. I believe that is the type that my father had.

Frontal Lobes

The frontal lobes, located at the front (behind the forehead) of the brain,  are responsible for executive functioning. This includes planning and sequencing, prioritizing, multi-tasking and recognizing/correcting errors.

Imagine trying to prepare a simple meal if you have difficulty thinking through the steps necessary to put a meal on the table for your family or to fail to see errors and correct them. What happens to a cake when the eggs or liquid is forgotten… the oven never turned on… or worse, baked at too high a temperature?

illustration of parts of the brain

The frontal lobes also help with managing emotions, decision-making, and language. When the frontal lobes become damaged, persons with bvFTD are often inappropriate in social situations and lack insight about their behaviors. One of the presenters shared a story of a person with  bvFTD who walked over and took a bite out of a stranger’s sandwich when dining at a restaurant to see if he liked it before ordering his own. Disrobing in public is not uncommon.

In later stages, the person with bvFTD has difficulty forming sentences  and with overall motor functions. My dad lost his language quite early but his motor skills remained in tact until the last year or so. He could no longer recognize or use a fork or spoon and required help with the simplest of tasks.

Temporal Lobes

The temporal lobes, located  below and to the side of each frontal lobe on the left and right sides of the brain, play an important role in memory retention and a major role in language and emotions. They help people understand words – both spoken and written. Without the temporal lobes, we are unable to connect words with their meanings, recognize common objects, or recognize emotions and respond appropriately.

What might bvFTD look like?

No two persons with bvFTD look-alike and each progression is unique as it depends upon the areas of the brain affected first, environmental factors, and contributing co-factors (such as other illness).  The major behavioral symptoms of bvFTD identified in the workshop are listed as follows:

  • dramatic changes in personality
  • loss of social skills
  • socially inappropriate behaviors
  • loss of empathy
  • loss of insight
  • impulsive actions
  • compulsive and stereotyped actions
  • inflexible thinking
  • emotional flattening (inability to show emotion)
  • bizarre somatic complaints
  • excessive eating, gluttony, poor table manners
  • loss of attention to appearance and hygiene
  • roaming

My biggest take-away was the lack of insight. Persons with bvFTD have no insight into their deficits. I attended a breakout session for persons with a diagnosis of FTD or PPA. There was a gentleman, clearly well-educated based on the work that he used to do, who could not understand why they took away his license. He worked as a consultant and without a license he was unable to visit his clients. He was a large man, wearing a t-shirt that was dirty and did not cover his large belly. He was unshaven… his overall appearance was unkempt. Perhaps a classic example of someone with bvFTD?

How are the FTLD types different from Alzheimer’s Disease?

FTLD may account for 10 percent of all cases of dementia and is as common as AD among those younger than 65 years. FTLD is often misdiagnosed in AD, especially in the early onset types. Sixty percent of people with an FTLD are 45 to 64 years old.

The average life span from  diagnosis of a FTLD type is around 10 years while persons with AD are usually affected later in life with an overall slower progression.

The challenges in AD tend to revolve around the memory problems. They have difficulty with memory around events or people and may become extremely anxious as a result. Their behaviors tend to be more socially acceptable. Similar to FTLD types, they may also appear apathetic or uninterested in former hobbies or tasks.   Unlike AD, FTLD patients often develop motor problems early in their illness, particularly the FTD/ALS type.

It’s complicated….

The GOOD News

Ten percent of those with a familial gene for FTD never experience symptoms. This is my hope.

To learn more about FTLD and its subtypes, I recommend this website.

Image Copyright: Andreus / 123RF Stock Photo

lessons from a mama cardinal

I have observed a pair of cardinals build a nest in the bush (more like a small tree) outside my office window this past week. It is a beautiful nest that is withstanding the April winds. There is probably eggs inside as I see the female resting in there quite often.

This morning was different. Instead of the female cardinal sitting in the nest there was a house finch (a cousin to the cardinal). When the female cardinal discovered her nest was hijacked she became angry. The little finch refused to give up the nest, lashing out at the cardinal every time she attempted to reclaim what was hers.

The male joined that battle, but the house finch was not going to give up the nest so easily. She called in reinforcements. Several males and another female joined  in and at one point it looked like they were going to win but the female cardinal would not give up.

After a time the male cardinal and finch recruitments dropped away tiring of the battle.  The two females continued to squawk and pick at each other. The female cardinal refused to give up and in the end… WON.  At least for now. I am sure that drama will continue but for now it over.

When they appear as a totem, they do so to remind us to become like them. Add color to your life, and remember that everything you do is of importance.Native Americans and shamanic teachings tell us that we can learn much by observing nature. A google search of “cardinal medicine” reveals that the female is unique in that she joins the male in song, recognizing the importance of listening to the inner (feminine) voice. Ted Andrews, Animal Speak, writes that this aspect of the female cardinal represents the need to be creative and pay attention to intuition more strongly.

My take-away or lessons from this female cardinal today, which coincidently occurred the day after I shared my story with a group of women from a local church, is to not be afraid to stand up for what I believe in.. to know and speak my truth…. and that whatever is wanting to be birthed in me… allow it to unfold.

I feel strangely connected to this bird as if she is telling me that standing my ground, speaking up, and paying attention to my intuition is my “work.”

Thank you, mama bird, for confirmation today that I am on the right track… and more importantly, that I am loved.

 

Living with a chronic illness?



for a friend, on the arrival of illness
John O’Donohue

Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.

You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.

You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;

Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.

Nothing before has made you
Feel so isolated and lost.

When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.

May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.

May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.

May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.

May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.

May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.

May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth