A Monarch butterfly has taken up residence in our yard.  I see it flutter past my window each day and it seems to bring a message of hope.

The day that the father of my children died, I did not know how to grieve.  It was sudden, unexpected, the worst type of loss for the ones left behind.  My heart broke for my daughter and son.  And I was deeply saddened to know that the man I spent so much of my life with, since I was seventeen, no longer walked this earth.

There had never been an experience like this in my life, but in times of deep sadness and despair, typically, I find my way in nature, alone with my prayer.  So, on this day in June, twelve years ago, I found a place for a long walk where I could be alone.  My tears came readily, for the memory of a good man, who always did his best.  I always respected Jack, a devout Catholic his whole life, and a good husband and father.

As I was deeply involved with these thoughts and happy memories, a Monarch butterfly joined me.  It fluttered all around me, landed on my shoulder several times, and stayed with me for the longest time.  I took this as a sign from Jack that all was well with him, on the other side of life, and it comforted me.  I found it very difficult to know the appropriate way to grieve an ex-husband, but this sign helped.

And now, another Monarch butterfly in my midst.  I have never noticed one stay so long in my yard, around my home, in all my life, and so I choose to believe it is another sign.  Another sign to comfort me.  To tell me that all is well.  And in my fearful times of my own death, that all is well on the other side.  I know this to be true, but in some dark moments, I experience fear of the unknown.

I am grateful for the appearance of the beautiful butterfly.  It warms my heart and sustains me in my faith.

This past month has been exceedingly difficult.  Normal bodily functions have been disrupted by essential medications, a vicious cycle and one that is challenging to rectify.  Day to day and hour to hour, I am in the moment.  Planning is impossible.  I find myself wondering if I had only lived more of my life acutely aware of the present, rather than dwell in the past or fear the future, how differently I may have made various choices. 

But I am not regretting what I have done.  I am sorry for making some poor choices, all out of fear, but I have forgiven myself and I am making great progress in forgiving others.  It brings inner peace.

And so my dear readers, today I ask you to try to be in this very moment.  Let go of fear, whenever you are able.  When it appears, stop, recognize it, identify it.  Oh, that is fear….and let it go.  The only thing that truly matters is now, and making choices which will enhance your life and the lives of others.  God bless you.

Fires burning hundreds of acres and toxic chemicals being dropped, all to stop the flames and desecration.  The air quality  has been poor for a week now.  For people with breathing issues, it means we are housebound, looking out the windows at the lush green trees, and flowering rose bushes. 

Finally, on Friday, I ventured outside to mail my dad his Father’s Day card.  It will be late this year, for the first time ever, but he understands.

We went to a movie.  It had been a rough day, but I was determined to get out and do something.  However, after being inside for a week, I now realized how much strength I have lost.  Walking into the theater, even from the handicapped spot was a challenge.  Climbing the stairs to our favorite spot nearly did me in.  I am still learning about this illness and the toll it continues to take.   In some ways it is like a story, one that will soon change, and I will be whole again.  I attempt to do things without considering my limited state, as in going up many stairs to our favorite seats, and find myself so surprised at losing my breath.  It is not only disconcerting, it is physically painful.

When the movie was over, I was relieved to leave and head home where I felt safe.   My needs can be met rather easily in my home, and I limit my challenges, only going upstairs when it is absolutely necessary.  In the comfort of my chair, a good television show can capture my mind for a while, and I am lost in the story, forgetting for a brief while that I am very, very sick.

I have lost my spiritual center lately, which is very painful emotionally.  I know what I need to do to return to that place of inner peace, but I am finding it particularly difficult.  My Hospice social worker comes tomorrow.  She is a gifted counselor.  She knows when to speak and when to listen.  She validates my feelings of despair.  One of the major issues I have been dealing with is how to forgive, and still honor my desire to eliminate connection with some people who have hurt me deeply in the past.

When an individual so clearly intends to inflict pain, over and over, and yet suddenly, because I am dying, they decide to reconnect.  It is a dilemma, but one I feel confident in my choice to value myself and my own feelings, particularly now.

I find that most of us are challenged in the way we deal with forgiveness.  Especially, when an individual does not ask for forgiveness, and acts as if they have done nothing to hurt us.  And so, I want to share with you, dear readers, how I have come to believe in the way I choose to deal with it.

My dear friend Denny gave me this advice.  Offer a prayer for this person, each time I think of them.  There is no need to reconnect because that is the last thing I want.  This time, I will put myself first.  I will protect myself.  That individual knows what they have done, and why they did what they did.  I can pray for them, and let go of all negative feelings toward them, for they have no power over me.  I am free.  I am free.

Perhaps most important in dealing with such a dilemma is to keep one’s center, and not wish the person harm, or revenge in any form.  As I write these words, I feel God’s presence, and I am experiencing such peace.

And when forgiveness is asked for and we can give it, how beautiful it is.  I have experienced this, as well.  To acknowledge my own poor choices which hurt someone, and feel so blessed at receiving reconciliation.  My cup runneth over with love and peace.

You may ask yourself how you deal with forgiveness.  To withhold it, is to give the person power over you, and the pain caused is as fresh as morning dew.  But to choose to let go, forgive, and move on is too beautiful for words.  And, to clarify, one can forgive in one’s heart, let go, without welcoming that person back into your world.

As I deal with my terminal illness, it is so important to me to live in the way God intended.  To be loving, and caring until the end.  That is my desire and I shall choose to live this way each day that is given to me.  I am blessed in countless ways.  I have a wonderful husband who cares for me in so many ways, that I never dreamed I would need.  A loving daughter and son, and their spouses all bless my life.  My Daily family, children and their spouses, the most incredible sisters-in-law, a brother-in-law and their children all add to the gratitude I have for them.  And six beautiful grandchildren who love me, bring me so much joy, it is overwhelming.

I live in gratitude for more love than I have ever known before.   And, my friends, that realization brings me the inner peace I yearn for.   For love is what it is all about.  God has blessed me with an abundance of love.  And, so it is.

Needing more pampering than usual, in the past week I have had my hair cut and colored, a manicure and pedicure, and a massage!  I’d like to share some thoughts about the visit to the nail salon.

Typically, I get my toes done every 2 or 3 weeks, so the folks at the salon, know me well.  When I walk in, iPad in hand, they take over, make me comfortable in their fantastic massage chair and I chill.  Yesterday was no exception.  Chair begins vibrating, rolling over my shoulders, down my spine to my buttocks and back up.  It is heavenly.

While this is occurring, my eyes are closed and I focus on how great it feels.  I used to practically eat People magazines, though I would never stoop so low as to buy one!  But now, I don’t read, I focus on my lovely relaxed state and I do look around.  I notice the other customers, the nail techs, the owners, and the children.

One prepubescent girl, around eleven, sat next to me.  The nail tech asked, “You want flower?”   She said, ‘No thank you.”  Her mother, sitting next to her, chimed in, “What, no flower?  They are so cute.”  Then Auntie said, “The flowers are so darling.”  The girl did not relent.  No flowers for her. 

I was secretly admiring her demonstration of will.  I was thinking, “You go girl!  You know what you want!”  She was nonplussed by all of this attention, quietly texting, ignoring all suggestions.  Not in a negative way, just unconcerned with their strong urgings.

I began to close my eyes again when I heard new customers arriving..  I have noticed that very large women love to get pedicures.  Perhaps it is one way for them to be feminine and dainty.  Who knows why?

As the nail tech works on my feet, suddenly she whips out a mini cheese grater!  I think, OMG!  The cheese grater!  Not that!  I just got toes done two weeks ago!  This instrument is to scrape away dead skin.  It makes it easier for the tech to remove it, rather than just rubbing with pumice.  But I have never had one used on me before.  I think, “Well at least it is the mini one.”

The massage begins soon after that, oil mixed with a heavenly scented lavender are combined to glide over my legs.  I choose this particular salon because of the long massages.  Oh, it is truly blissful.

The girl next to me is finished, and now her family is praising her choice of polish color.  “Oh it’s raspberry!  Beautiful choice!”  The girl smiles, but still doesn’t care what they think.  I really like this girl!  She reminds me of my granddaughter, Kila, who is also very self-assured.  Nice.

After my polish is on, I am moved to the manicure table.  My tech, who speaks Vietnamese, but little English is very kind and solicitous.  She mouths her words carefully, whispering.  (She thinks I am deaf).  It doesn’t matter.

From my new position, I have a great view of all the other customers, techs, the action.  It is so interesting, not unlike an airport, where the diversity amazes me.  I find nothing quite as interesting as people, and most of us belong on Saturday Night Live.

As I am watching one customer, a large woman with tiny feet, I see the nail tech whip out the big cheese grater!  I mean this is the real thing!  As she begins, deftly sweeping the instrument over her heels, the chunks of dead skin fall on the towel below.  I am mesmerized.  Huge amounts of skin falling down, piling up……I am thinking, “Wouldn’t it be great if that skin was valuable?  This woman might be a millionaire! 

I have never seen anything like it.  The customer was sitting there, reading People magazine, oblivious to the pile of skin that grows with every stroke.  The massage chair is in full tilt now, jiggling her around like a roller coaster and she is having the time of her life.  I stare at the pile of skin and wonder when it might get large enough to fall over. 

When my manicure is finished, I am brought to the drying table, and who am I facing but the woman with the excess foot skin!  I stuff my giggle and force myself to think of something else.  Maybe the weather, anything to stop thinking about saying, ‘Hey!  Wouldn’t it be awesome if we could cash in on all the dead skin they remove!”

Probably before my polish is quite dry, I think I’d better get out of there, as quickly as possible!  I gather my purse, sunglasses and shuffle out across the parking lot, with the toe separators still in place, and into my car.  I am happy.  I had fun and no one even knew it!  Fun with my own ridiculous thoughts, and pleasurable feelings as my feet were pampered.  As I drive away, I ponder, “I wonder what surprise the next time will bring.”

Sitting in the movie theater, early to arrive, as usual.  Chris is at the snack bar and I am alone with my thoughts.  I am remembering a similar time, two years ago, both before and after my diagnosis.  Filled with fear as I wondered what would be found, causing me to speak in this new, inarticulate way, and after the diagnosis came, wondering how I would be able to live the rest of my life with the threat of sure death facing me.

Remembering what it was like before the ALS diagnosis and early signs that something was awry.  We were in that space of normalcy, confident in the routine of our lives. 

Now, as I reminisce, I am glad that I didn’t know what to expect.  There was a lot of fear in not knowing, but the progression has happened in tiny, almost undetectable snippets.  Cumulatively, it is huge, as I think about all of the abilities that have been forever lost.   Abilities that I never imagined losing.

People respond to their death promise in a myriad of ways.  Some, in an attempt to squeeze a lifetime in two or three years, travel the world.  My choice was to live what time I have left in familiarity.  I had procrastinated greatly all my lfe, assuming I had limitless time to see those things that were on my invisible “bucket list.”  And as time went on, and we adjusted to the inevitable acceptance of my disease, I realized that all of my plans that required physical exertion would be eliminated. 

Even now, with an invitation to go to the mountains with other ALS patients and their families, it seems too overwhelming to attempt.  Just looking at each day as it comes can be a challenge.  My disease is forcing me to live “in the moment,” something that was nearly impossible for me when I was healthy.  Being in the moment, fully present, was always difficult for me to achieve because my mind was constantly pulling me in a million different directions.   Now, because the way I feel, in any given moment, is so precarious, I don’t plan.  I don’t fill my mind with fear of the future, or pain from the past.  I am here, now.   When I feel peaceful, when I can breathe, I am filled with gratitude.

And so, I share these thoughts, just in case my readers share that challenge of being fully present in any given moment.  When our minds are full of plans and concern for the future; when we perseverate about the past and remember every detail of how someone hurt us, or of lost opportunities, we cannot achieve inner peace.   To accept the fact that control is truly an illusion, we are left with countless opportunities to enjoy and appreciate. 

Now, when I take the time to accept my Mollie’s invitation to rub her belly and watch the bliss that comes over her face, I, too am transformed.   When I have my morning feeding with two eighteen pound cats on my lap, purring loudly, I am with them.  I put down the newspaper, the iPad and stroke their silky furr and feel close to them.  I purr right along with them, if only in my mind.

On this Memorial Day, I remember all of the great women who have left this world before me, after blessing me with their presence in my life.   I am the appreciative recipient of their love, their wisdom, the lessons they shared which help me now.  It is my strong desire that I may share my journey with you, dear reader, and in some small way create a new sense of hope and gladness.  Know that you have immense power to create the life you want.   Being  fully present is an important beginning to achieving that goal.

God Bless you, one and all.

 

It has been a long week, full of ups and downs.  A malfunctioning bi-pap made breathing extremely difficult and evoked fear as I labored to pull in enough air.

I was exhausted after our trip and my long treatments.  Several days of almost complete rest and then the breathing difficulties started.  I was feeling very overwhelmed.

Prayer brings us many answers; sometimes they are surprising, and sometimes one has to follow various clues.  My answer to my “dilema” came soon after writing my last blog.

I have decided not to pursue the treatments.  Long ago, I accepted my terminal illness.  There is no cure for ALS, and although it is appealing to imagine being able to feel better for a longer period of time, there are no promises.  It took a long time for my muscles to become as tight as they are in my neck, shoulders and back.  Sometimes, it hurts, but, most of the time the only negative part is holding my head up.  I know that is a big deal!  However, I have learned how to live with it.

I want to enjoy the peace and serenity that I can create in my life.  My patio has become a kind of sanctuary, as the lilac bushes have grown tall, there is a great deal of privacy.  I can be there with the birds and my dog Mollie, a good book, listening to my fountain.  It is lovely.

I find it challenging at this moment to feel peaceful.  The residue of the angst of not being able to breathe adequately has left me in a jittery state.  Typically, I am calm, but today I am anxious and irritable.  I don’t like feeling that way, although I know it is a normal state for someone in my situation.  I prefer feeling peaceful  and loving and accepting, but at this moment in time, I am struggling.  However, having said that, I must include the following.

The AIS technique is one that I would highly recommend to people with athletic injuries, as well as other muscle related health problems.  Some neurological problems are ameliorated by this treatment, with a highly skilled practicioner.  I would also recommend the clinic in Florida that Aaron Mattes runs.  He has a history of healing many issues, including helping people with Parkinson’s Disease.  All of the information is available through Google.

For me, at this stage of my illness, I choose comfort, nurturing, warmth, loving touch, ease.  It is a good fit for me at this point in time, in my life.  After reading my last blog, my son wrote: Just follow your heart, Mom. 

Mollie is learning to go out with me, as I ride the scooter.  She leads the way, tail up, prancing around our little neighborhood.  When I feel that she is ready, we will venture out to the larger neighborhood, where she always enjoyed walking and slipping into the canal, in the hot summer months.  In the meantime, we shall keep our little circle small, and she will be rewarded with bits of cheese.

In an effort to be intentional about shifting my mood, I will don a sunhat, get on the scooter with iPad in the basket, and Mollie up ahead, and have a toodle around.  I hope I will see favorite neighbors to chat with along the way and Mollie will seek out a shady spot under a tree. 

Urging you, dear readers to be mindful of what you need at any given moment.  Rather than pushing a little harder to get just one more thing done, sit back and think:  is this what I really want to be doing now?  Choose what gives you peace, satisfaction and feelings of hope.  Just allow yourself to be still and be choiceful about what you will do.  My guess is that if it can include nature, or loved ones, you are on the right track, but only you know what is best for you.  And, trust me, you only need to hear your inner voice.  That voice will lead you to what affirms you, brings you to life.  Enjoy!

Recently I received a new theraputic technique developed by Aaron Mattes of Florida.  It is called Active Isolated Stretching (AIS).  Two therapists trained in this technique have worked on me and both believe they have the ability to restore muscle strength in my neck and shoulders.  The requirement is that we do exercises every day to reinforce the work.  It is very painful and expensive.

Loyal readers of this blog know that I have accepted my illness and the fact that there is no cure.   As my illness has progressed, I have been in a peaceful place knowing that it will soon be over.  My plan to stop eating and drinking through the feeding tube will effectively end my life in less than a week because our bodies cannot survive without water.  My decision was made a long time ago and would be timed to when I felt that my quality of life has diminished to a point where I feel I cannot go on.

I thought this was my only option and now I am confused.  I find that I still have some hope to live with enough of myself intact, for a time, to be worth the effort.  But the cost of this new option is huge. 

On Friday and Saturday I received six hours of this AIS treatment.  It was NOT fun!  Chris took photos and videos of my therapist working on me so that he could assist me in doing the exercises.  It was very difficult for Chris to see me in pain, which makes him skeptical about the process.

I am skeptical, as well, and I wonder if I could do it…..Does the end justify the means, so to speak?

Recently, I read Tuesdays With Morrie, by Mitch Albom.  This book was a bestseller for years, it seems.  It called to me from the shelves numerous times, but for some unknown reason, I resisted buying it.  Little did I know that it was a true story about a unique man with ALS!  And, if I had read it then, I surely would have loved the story, but it would not have the same meaning as it does now.  Serendipity happens.

This is an inspiring story of a brilliant man and his adoring student.  The dying man had so much insight regarding achieving happiness and what is important in life.  Surely, it is not about finding happiness through identifying with the home you have or the car you drive.  People who acquire these possissions as a way of defining themselves are sorely lost.  How sad that in a materialistic society people continue to attempt to garner stature, popularity and love through their possessions!

Morrie said, “So many people walk around with a meaningless life.  They seem half-asleep, even when they are busy doing things they think are important.  This is because they are chasing the wrong things.  The way you get meaning in your life is to devote yourself to loving others, devote youurself to your community around you, and devote yoursefl to creating something that gives you purpose and meaning.”

My new therapist is one of these people.  He feels deeply about his patients and holds himself to a very high standard.  For Bill, it is not about the money, but the benefit he can give in order for people to live pain-free meaningful lives.  And this describes my dilema.  I believe in him and his skill, but the cost to me is huge in terms of my ability and desire.  “What should I do,” I ask God.  “What should I do?  I thought I was sure of this journey and where it is leading.  Now, I am no longer sure and I fear that my will to involve myself in this AIS process is too weak.”

And yet, the thought of living 6 months longer than I expected or even a year, is so appealing.  To be able to spend a bit more quality time with my beloveds is a beautiful dream…..

My plan is to continue my prayer and to have faith that I will know what the best decision is for me.  I need to give it time, like a newly planted seed to be nurtured.  My faith tells me that I will know what is right for me.

I would love to know how many people are reading these words of mine.  Some of you leave beautiful messages, but that isn’t necessary.  If you want to remain anonymous, that’s fine.  You could leave just one initial, to let me know you have taken the time to read my thoughts.  I surely would appreciate that effort on your part, and if you are willing, please say a prayer to your God asking for me to be given direction in resolving my dilema.

God bless you!

Blessings are everywhere!  This morning I decided to ride my scooter early, before it became too hot here in Colorado.  I was amazed to find all the summer flowers already in bloom!  Everything is so beautiful and the birds are praising the early arrival of summer-like weather.

I have ridden my scooter past an acquaintance’s house frequently, but have not seen her in her yard.  The last time I saw her was in autumn, when I was still able to walk Mollie around the greater neighborhood.  I met this woman in her garden one day a couple of years ago.  We struck up an acquaintance in this casual way, talking about flowers and our dogs.  She had an old black Labrador retriever.  He was her constant companion.

About a year after we met, I saw her walking, and upon greeting her I noted that I hadn’t seen her in ages.  She was recuperating from a bout of melanoma.  She was nervous about healing, and as I walked with her, our dogs leading the way, I attempted to be as supportive as I was able; listening more than talking and exhibiting a positive attitude.  Over the ensuing months I watched her improve, both physically and emotionally.  Once again, she was tending her glorious garden and throwing balls for her dog.

About a year ago, I shared the news of my diagnosis of ALS.  At the time, the only discernible symptom was my speech.  Otherwise, physically, I appeared strong and not changed noticeably.  She was kind and saddened to hear this news.

She was extremely worried about her dog who had grown too old to run.  He could barely walk and she could not speak of him without her eyes filling with tears.  She was trying to determine if she was keeping him alive for him or for her.  He  was always nearby, still loving to be on the cool grass, surrounded by the lovely floral scents.  I felt such sympathy for both of them.

Today as I was scooting by her house, I was so pleased to find her working in her garden.  One look at me however, shocked her.  She came over and asked me how I was feeling.  I grabbed my iPad to have a conversation.  As I typed out my current situation, she patted my arm and cried.  She was very sad, and I found myself needing to comfort her, explaining that this is my journey and although I never would have pursued it, I do accept it.

She told me that her old beloved dog had passed last December and she is lost without him.  She asked if she might take Mollie on some walks.  I told her that Mollie would be thrilled, because I am unable to do more than short walks in our townhome community.  She said how much she misses long walks with her dog.  I asked about my spring flowers and how long I should leave them before cutting them down.  She offered to take care of them when they are ready.

A chance meeting.  Two older women with dogs and flowers and illness and loss in common.  These things bind us together.  A door closes, another opens.  She needs the comfort of a loving dog and Mollie needs longer walks.  My garden misses the care I gave it, but my friend will help.  Amazing.

Last night, two of my river rafting girlfriends came by to see me.  It has only been a short while since they were here, but my illness is progressing at break neck speed.  We laughed and cried together.  The courage and compassion and love of one another are cherished gifts for us.

I have been truly blessed in this life time by wonderful women.  My dear paternal grandmother, Aurora, helped me survive a mom who couldn’t help that she was inadequate.  Countless women along the way have nurtured and loved me and every single one has helped me to be whole.  My daughter Kim,  the first child I was given at only nineteen is, and always has been the most important feminine treasure.  No mother ever had a daughter to be more proud of.

 Priscilla Less, a high school friend, whom I loved with all my heart died at 26, my first deep loss after my grandmother at 15.  Another high school friend, Madge, was a wonderfully fun companion and Joy, my oldest childhood friend who loved me one day and fought with me the next, is someone I treasure still.

Elinor Avery, the speech pathologist I worked for in elementary school, my first para-professional position.  Elinor taught me so much that I needed to learn.  Marie Bogan, a friend carried in my heart from Pownal, VT to Seattle, and, of course Lisa Burgess Hodgkins, my surrogate daughter in Maine.  Lisa and I found our missing links when we found each other.  And Susan Vayda, the most feminine woman I have ever known, taught me about beauty and honesty.

Sandi Seader from the City of Longmont, a brilliant woman, younger than my daughter, but our bond has been deep for over ten years.  Long after my tenure with the City, her friendship continues to warm my heart.

Anne Chaisson, who followed me from Maine to Colorado, and gave me the comfort of a Maine friend in my new state.  It has already been almost a year since she died and I miss her every day.  Denny, Carolyn, Jannet, Jan, my Daily daughter, Andrea and my daughters-in-law Nancy, Sarah and all of my Daily women relatives.  How very blessed I am!

Each of these women has given me a priceless gift.  Cumulatively it amounts to such an abundance of love.  My cup runneth over.  Today and every day of my life, I give thanks to God for these incredible women  for being in my life.  Each of them has given me the strength and courage to face the challenge of my lifetime.  And I pray that I am worthy of all they have given me.

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