I kept moving to be sure there was no confusion about my still being alive.  I did not want to be mistaken for road kill.  At first I saw them off in the distance sitting on the newly mown field next to me as I walked the path at Cedarcrest.  I thought they were regular wild turkeys.  Then I saw them take off.  They were Turkey Vultures.

On the wing, Turkey Vultures are elegant birds.  Their wingspan is almost that of an American Bald Eagle.  When the sun hits them a certain way, the feathers on their wings seem translucent.  They float effortlessly, wings in a V shape, circling and soaring. Once a couple of years ago, one came over me so closely that I could hear the swish of its wings.  As long as a person is far enough away that he/she cannot see the ugly heads, they appear beautiful.

It was very impressive to see so many in the air at the same time.  Later in the walk, a Green Heron landed on a nearly pier as I passed one of the large ponds there.  The morning walk continues to be helpful.  At the moment, I think I actually need it to help keep my healing on course.

Wednesday morning (today is Friday) had been a good one since the Spiritual Formation group continues to provide a rich environment for processing what has gone on or is now going on in our lives in a way that reveals God’s hand, loving and supporting us.   There was a lunch with a good friend including some great conversation, very refreshing.

The afternoon included the second day of exercising.  The muscles that were getting sore, were worked enough to help relieve the discomfort for the moment. Then I headed to the mall to try to get a gift for Granddaughter Ashlyn’s upcoming birthday. I ended up walking the circumference of the mall on both levels, probably adding up to almost as much distance as I do in the morning.  I decided to try to add a mall walk on the hot afternoons.

I ended up at a couple of other places to get the gift.  Even with all that activity, the pain of Mary Ann’s death emerged, staying with me the rest of the day.  Oddly, yesterday a neighbor who lost her husband a couple of years ago, called to see how I was doing and revealed that she had had a bad day on Wednesday also.  Must be something in the air.

Yesterday was some better.  The walk in the morning was followed by a visit from a member and his daughter.  Ed is helping with a bit a caulk repair in the bathroom. They were both fun to talk with.  Later in the day a former member had asked me to to help her process something, a role that feels comfortable for me after so many years in the ministry.  That also was an enjoyable time.

I went directly to the third different support group meeting this week.  While there is a little overlap, they are all different groups.  It is remarkable just how helpful it is to be in a setting in which there is complete understanding and the freedom to laugh or cry without hesitance.  Talking so freely there makes it easier not to talk about the loss with others who will soon tire of hearing about how much it hurts.

The groups also help temper the fears that the pain is still so strong and hasn’t let go yet. It is apparent that those who have experienced a death as recently as have I are struggling at least as much as am I.  Those for whom the death was a couple of years ago, still have access to the pain, but they are not disabled by it.  They are able to enjoy life again.  The groups provide a helpful perspective.

After spending some time with vultures this morning, I got some more organizing done at the house.  I decided to buy flowers in memory of Mary Ann and for myself. I did as I had done before when getting them for her.  I asked the folks at Flowers by Bill for ten dollars worth of colorful flowers.  I was given a large bouquet with varied colors, from pastels to deep, dark colors to bright and cheery colors.  That bouquet now adorns the dining room table.

There was another walk at the mall.  After that I went home and read a very small book called Good Grief by Granger Westberg.  Daughter Lisa had asked about it in a phone call.  She saw it on a Hospice list of recommended books.  That little book was very helpful since it nailed very many of the struggles I have been having and named them as stages in the process.  They are different from the stages of grief traditionally listed.  The book confirmed that feeling each stage fully is a way to get through the grief, incorporating it into the new person who is emerging.  Not everyone will, of course, grieve in exactly the same way, but what he described seems to be the most common experience.

The evening ended with a very enjoyable dinner out with former parishioners.  We came back to the house and talked for a while about a variety of things.  I felt almost healthy again.

A couple of days ago, as I was making one of the rounds in the mall, something very obvious found its way into my awareness.  While Mary Ann has died, I have not.  It doesn’t seem fair that I should be alive and she is not.  Fair or not, it is so.  I am actually alive.  I do not need to feel guilty about that or apologize for it.  I am free to go on with life.  Recognizing that does not make it easy, just possible.

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FIRST CONTACT: She was 5 and I was 3.  She pushed me off the chair — or did I push her off?  Our Mothers never told us who pushed whom, just that it happened.  It was a Ladies’ Aid Meeting at Our Saviour Lutheran Church, 420 Downer Place, Aurora, IL.  I did not have to look up that address.  I remember it well.

We broke up for a few years after that incident, sixteen years to be exact.  I tried other girls in between.  There was Marsha in the 1st Grade.  I was devastated when she moved.  I don’t remember if we ever actually talked.  That is irrelevant in the First Grade.  That, by the way, was the year Butch and I decided that we would walk home to our respective houses on the same block even though it was just recess time.  The Principal came, picked me up, and sent me back to the classroom.  I still have a little video in my mind of walking back into the classroom that afternoon.

Then a few years later, I was playing in the basement at Sharon’s house (how I got there and why, I have no idea).  She kissed me.  It scared the bejeebers out of me and I ran home as fast as I could go.  We never spoke again.  I suspect Sharon doesn’t even remember it happening.  If she does, I doubt she would ever admit to it.

Then in the 7th Grade, it was Georgia.  Her hair stuck out in curls on either side of her head. She looked cute in her Poodle skirt and bobbie sox rolled down.  The closest we came to contact was sitting next to one another by accident at an all school Assembly.  She seemed decidedly annoyed that she ended up sitting next to me.

Then there was Paula, tall, with long blond hair.  It was the 8th Grade.  I thought there was hope.  She shut me down when I called her.  She said, “I thought I told you not to call!”  Then she hung up.  She never told me not to call!!

By the way, those all happened in the years I was still tall, second tallest boy in the whole Seventh Grade of maybe sixty kids.  Apparently my Pituitary Gland decided it had had enough and stopped putting out.  Everyone else grew, I was done with that.

It was not until Pam that a girl I liked actually liked me back.  She was from our church, a year older and pretty.  As a Sophomore in high school, it was no small thing to be going with someone older.  After all the rejection, I was sort of surprised anyone would be interested.  When I got my class ring as a Junior, my parents were mightily displeased when I gave it to Pam to declare that we were going steady.  Let me clarify for the young among you.  It was two years of dating before we held hands and not until she was at college that we kissed — and then it was the sort of kiss that would be seen in a 1950’s movie.  Some time in the Senior year, I broke up with her.  I am not sure why.  I remember during the first year in college writing her and telling her I had made a mistake, but it was too late by then.

My Senior year I did have a couple of dates with classmates.  I don’t suppose there would have been any future if the date with Carol had been any more than just a one time casual date.  I am not sure a Jewish Spouse would have been a popular thing for a Pastor in a fairly conservative branch of Lutheranism.  One of the kids I hung out with in choir and music activities suggested that I ought to become a Rabbi (which is what Mary Ann’s family calls me).  I did try to learn to chant Hebrew once.  I could read Hebrew and I could chant, but I could not put them together as any fourteen year old Jewish child who goes to Hebrew School can.

When I got to college in Milwaukee, the girls were nowhere to be found. It was an all male student body.  What a bummer!  I asked a school secretary out, but she said no.  Later she told me that she was going out with someone in her home town and was afraid she might like me too much.  Nice try!  Actually, she married someone who turned out to be a nationally acclaimed writer.  She did very well.  I know her husband as well and like both of them.  They are good people.

In college I did date for a few weeks a girl who made me look tall.  Then a young woman came to the school with a choir from another campus of our church body’s schools.  Alice had striking red hair.  We sort of hit it off, but distance made dating impractical.  I don’t actually know how interested she might have been.

Understand that I was always surprised when there was so much as a hint of interest from a girl.  Short, big ears, pointed nose, and no practice at the art of dating and interacting with girls, made me very unsure of myself.  In those years there was no “hooking up” to be done, especially for a naive ministerial student.  Courting was a very measured matter.  Or maybe that I thought so was one of my problems.

After the first year of college in Milwaukee, I returned to Aurora to work at Fredrickson’s Office Supply and live at home with my parents for the summer.  I had participated, and, I guess, help found a Singles’ Group at Our Saviour.  We enjoyed social gatherings, playing Hearts, eating pizza.

SECOND CONTACT: She and Joy were sitting on the bleachers two rows down and just to the left of me.  She was yelling (not sweetly) at the umpire at the church softball game.  It is there that I met her again after the nasty incident at the Ladies’ Aid Meeting.  She had long dark hair, olive skin, striking blue eyes, and a whole lot of attitude.  Whatever “at first sight” there was, it sure turned into love in short order.

That story will continue tomorrow.

Today went reasonably well.  I began it with two rounds on the path out in the open area at Cedarcrest, the Governer’s Mansion.  It is a beautiful estate whose grounds are open to the public.  It was a cool, clear morning.  The birds were busy, singing loudly.  By the way, an exercise walk is not a time for birdwatching.  It is a time for bird listening.  I was frustrated at how little I know about identifying birds by there call.  I did recognize the Red Winged blackbird’s various songs.  It took me right back to my years playing in the swamp.  The walk was over two miles. At least it is a start.

Every once in a while it would pop into my mind that I needed to get back to the car to check on Mary Ann.  After one round, I needed to get back to the house to check on Mary Ann, then I realized that was not necessary — I could walk a second round.

After showering, having breakfast and feeding the birds, there were a few emails to which I responded.  Among them were the ones related to what we will be doing in the Aurora area as a remembrance for Mary Ann.  The date is set:  Saturday, July 10 at Reuland’s, 115 Oak Avenue, Aurora, IL 60506.  We have the room from 11:30am to 3:30pm.  We will set a specific time for the worship part and remembrances and include that information in a subsequent post.  My hope is that everyone who wants to come will come for the luncheon portion also.  Those of you who read this blog and are close enough to come are welcome. Please comment to let us know a number so that we can tell Reuland’s how many to prepare for.

When I was walking this morning I thought again about the difference between what our life together looked and felt like from the inside compared to how it looked (and now feels) from the outside.  Our life was not lived in relation to what could have been.  It was lived in relationship to each other and our reality at the moment.  It was the only life we could actually live.  What could have been simply did not, does not exist.  It is somewhere in those observations that I hope to find the ability to come to terms with the horror of what I see when I look back, when the video is running in my mind.

The day included a trip to the funeral home to deliver the check for the difference between what the Pre-need Plan paid and what it actually cost.  I caught the Assistant Administrator off guard when I phoned her after receiving the bill today.  I told her that they had undercharged me for something.  She corrected it.  When I brought the check, she admitted that it was the first time anyone had called to notify them of being billed too little.  I would have complained if it had been the other way around.  They did the work, they deserve the pay.  They also did a very good job.  By the way, the funeral home is just blocks away from G’s Frozen Custard.  Who knows when I will be back in that area.  (Actually, I could have mailed the check.  I saved a 44 cent stamp and it only cost me the a dollar’s worth of gas and $3.52 for the Sundae. What a deal!)

Apologies — I still haven’t started the Thank You’s.  I now have absolutely no excuse not to get things done.

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Downstairs on a quilt rack is a queen-sized Sampler Quilt. A Sampler Quilt is a quilt made with many different patterns that serve as samples of traditional quilt blocks. That quilt was stitched entirely by hand — no machine quilting. The stitches are even and very, very tiny, the way quilt stitches are supposed to be. It took Mary Ann two years to transform pieces of fabric into a completed quilt. Parkinson’s has stolen from her the ability to handle a needle at all, let alone sew a quilt.

Those who have a progressive disease with no known cure are forced to watch their abilities, abilities that that helped define them as unique individuals, diminish until each one crosses a threshold that leaves them empty of that ability. Each loss is a little death. It is grieved just as if a piece of her/hiim has died. Each loss brings with it all the same stages that have been used to describe the grieving process that is experienced after losing a loved one.

Most of the times Mary Ann and I find ourselves in conflict it is because we disagree on the degree to which one of her abilities has diminished. She is convinced she hasn’t crossed the boundary that leaves that ability on the other side, out of reach. I am often more ready to find acceptance than she is when an ability is lost to her. While the conflicts are unsettling, seeing her fighting acceptance reassures me that she is still her feisty self. When I see her accept whatever loss it is, I feel a deep sadness that a little of her is lost.

Watching someone you love lose a bit of herself grieves the Caregiver. To put it in more dramatic terms, Caregivers watch their Loved Ones die a little at a time for however long the caregiving goes on. While that is a harsh way to speak of it, calling each loss a death helps put in motion the process that ultimately can lead to acceptance.

Please understand, there is no way to make this part of the life of a Caregiver and Carereceiver pleasant and fulfilling. What can happen is by accepting the loss, full attention can be given to the task of building a new reality that has new ways of finding meaning and fulfillment. That, of course, is far easier said than done.

As a Caregiver, I am tasked with finding new ways to live meaningfully, when old ones are no longer available. I cannot stop the progression of the disease, the process of decline, but I can look for places to stop along the way, places of significance and meaning, places that could not be discovered if still trapped in the grief.

As I was thinking about this today, it dawned on me that the chronically ill and their caregivers are not alone on this journey of loss and grief and the need for acceptance. Every one of us who has seen a gray hair or felt the sharp stab of some arthritis or seen wrinkles where the skin used to be smooth and taut, every one of us who has been defeated at our favorite sport by someone younger and more agile has some grieving to do.

Since we are all mortal and confronted by our mortality at every sign of aging, we all have the challenge of identifying what we have lost and moving through the grieving process to acceptance. Otherwise we will waste the time of life we are in trying to live in a time long gone. We will miss whatever opportunities lie embedded in the present, opportunities unavailable to us until now.

For those with Parkinson’s Disease or any other seriously debilitating disease, the pace of the loss is increased, the degree intensified. There is just more grieving to do and more acceptance to seek. The abilities in those with a progressive disease may diminish to the extent that it seems virtually impossible to find anything left for them to do.

In almost forty years of pastoring, I have been invited innumerable times into peoples’ lives at the death of someone they loved.  (Sometimes it was someone I loved too.)  Sometimes the death came at the end of a long life. Sometimes there was a protracted illness. Sometimes people stood watch as their loved ones died painfully.  Sometimes the death came so suddenly as to leave them breathless, having had no time to prepare or say goodbye.  No matter how it happens, a death must be grieved. It is not a matter of one being harder or easier to deal with, each must be grieved.

For those who are Caregivers for someone with a progressive disease for which there is no known cure, the grieving is spread over all the years of Caregiving.  There are times when the pace is measured by small steps and times when there are frightening leaps toward the inevitable end of the journey.  Grieving is an important process in the journey.  It gives us a chance to express a variety of emotions, to deny for a while whatever it is that has been lost, to spew out some anger, to spend time wondering what we could do to change it, to just feel bad about it for a while and finally to recognize it for what it is, another step we have taken as we travel along with each other and the disease.

When we move through grief in a healthy way, the accepance that comes frees us to be ready to see what possibilities lie in the present.  We are able to see them and judge their value by what is so in the present, not by a past that is no longer accessible.

It must be added that those of us who deal with Parkinson’s Disease, Parkinson’s Disease Dementia, Lewy Body Dementia and a number of diseases like them have the even more frustrating challenge of grieving the loss of one level of functionality, only to see it return for a time, then disappear, return again, all without any identifible pattern.  It is sort of like the weather in Kansas and Oklahoma.  If you don’t like it, just wait a bit, and it will change. One loss may be grieved many times.  There is joy when what has been lost returns and sadness when it leaves again.  We have the challenge of grieving the loss of consistency and the ability to make and realize plans based on the abilities that exist at the moment.  We have to develop the ability to turn on a dime and change directions based on what is so in each moment as it comes.  Our need is to come to acceptance that we are not on a train moving at a measured pace in a certain direction.  Our need is to accept that we are on a roller coaster with all the twists and turns, ups and downs, with no way of knowing when or where we will be next.  We know the destination for certain.  We just have no idea when that destination come and the roller coaster will stop.

In the meantime, the journey with Parkinson’s or any debilitating disease accompanying us demands that we learn to grieve effectively.  The grieving helps us find our way to acceptance so that we can live in the present, so that we can see and take advantage of whatever opportunities lie in the present as it really is.  The ability to grieve losses effectively frees us to live with meaning and purpose the life we have each day as it comes.  The day we are in is the only one we have for sure.  Grieving well frees us to live it to the full.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.