Therapeutic Activities


Maybe not, but darn close.  One of Mary Ann’s challenges after the stroke was negotiating the utensils she ate with.  Getting food on to the fork or spoon and where is was supposed to go was not an easy thing.  How much we take for granted.  We don’t give a second thought to the matter of getting food into our mouth unless we are using chop sticks or trying to eat peas.  For Mary Ann, just eating a few bits of food could be a major challenge. 

To help with the problem, I got a couple of thick plastic plates from Munn’s Medical Supply.  The plates were called Inner Lip Plates (a trademarked name).  They were just that, plates with about a half inch high lip around the center part of the plate.  They provided an edge tall enough to push the food against it allowing the fork or spoon to get under it without pushing it off on to the table. 

After a year or two of using those plates, it dawned on me that we ought to be able to get plates that we could all use when we ate together with the Kids here.  We had on occasion purchased pieces of pottery from Jepson pottery that had an outlet about 45 minutes away.  His studio was only an hour or so away from us in the other direction. 

We had gone for an outing a couple of times and stopped at his Studio.  Actually, we discovered where it was located when we used the GPS on one of our ice cream runs to Emporia (over an hour away) and we drove right by Harveyville, Kansas on the way.  When we were at the studio, I saw some chili bowls that seemed a practical alternative when Mary Ann was eating soup or ice cream.  The sides seemed to be shaped in a way that might make it easier for her.  She picked out some colors that were very nice, she was very talented in the use of color. 

The Fat Cat actually was the fattest cat by far that I have ever seen in my life.  It owned the floor of the Jepson Studio.  It was friendly and not at all hesitant to engage anyone willing to scratch an ear or pet his gigantic back.  I think the answer was something like 27 pounds when I asked how much he weighed. 

We headed to the Jepson Studio again, this time with one of the plastic plates to use as a template.  He made a ceramic plate with the lip, in the colors Mary Ann had chosen.  It was just the ticket.  He made five more so that we could have six adults using the same plates, with no “special” plate for Mary Ann.  They are beautiful.  He made some high sided bowls that work even better than the chili bowls.  The plates and bowls were heavy enough that we did not need to use the piece of non-slip Dycem to keep her plate from sliding around. 

I have written about this in an earlier post.  I include it here as I review the various outings we took, adding quality to our days in spite of the limitations of the Parkinson’s. 

We enjoyed the trips out to Harveyville, but certainly liked best arriving at the final destination at Braum’s in Emporia where we had Pecan Caramel Fudge Sundaes.  Other times we picked up Friend and Thursday Volunteer Jeanne (once including Volunteer Coordinator/Friend Mary) to head out for a ride that took us to Harveyville and then through the Flint Hills to Alma.  A walk up ice cream shop had opened there after a while, so there was extra motivation to go that direction. 

One way or another, we were determined to get out of the house and so as much as we could while we could.  Mary Ann needed to eat plenty of calories, especially after she began losing weight last summer.  Whatever health issues might be associated with ice cream, they were trumped by the need for a little pleasure in a life that did not offer many. 

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Our travels took us first to Greenville, South Carolina when Lisa moved there, then met Denis and they married.  Needless to say, those trips were taken on a plane.  When they moved to Louisville, Kentucky, we could drive there.  It was at least ten hours for us to make the trip, but we could do it.  There was Interstate from within blocks of our house here to within blocks of their house there.  By that time we had dealt with the life-threatening pneumonia after the plane trip to Tucson, so we gave up on traveling by air. 

Then something remarkable happened that shortened the ten hour trip to three minutes.  It went something like this: Denis said to Lisa, “Why don’t we move to Topeka to help out your parents for a couple of years until your Dad retires.”  I don’t know if those were the exact words, but that was the gist of it.  Lisa called.   Mary Ann was ready for them to come.  I wanted them to be sure not to disrupt their lives and careers without thinking it through carefully.  Our goal in raising our children was that they have the best life possible.  They thought about it and did it.  It was their choice to make.  What a gift it was to us. 

Within weeks, Lisa, Denis, Abigail and Ashlyn were in our downstairs, heading out regularly to look at houses.  They found one three minutes away.   Denis looked for work locally, while continuing to work for his employer in Louisville, traveling some, doing much of his work at the computer.   Denis did so well from here in Kansas that his boss wondered if he shouldn’t move here.  The job continued all two years. 

During that time Lisa and the girls came to the house before I left for work two days of the week.  She took over scheduling the weekday Volunteers for the other days.  She and the girls would take Mary Ann to their house until late afternoon when I joined the family for supper at their home.  After supper, I took Mary Ann back to our house, where often there was another Volunteer who had  been scheduled by Mary for the time I was at an evening meeting.  Of course, there were many other times that Mary Ann would stay with Lisa and the girls or they would come to the house.   Between Mary, who scheduled evenings and weekends (weddings, retreats), Edie who scheduled Sunday mornings (after an early shift by a paid home companion from an agency), Jeanne who came on Thursdays, and Lisa dealing with daytimes, I was able to continue to fulfill my responsibilities as the Senior Pastor of a large and very active congregation.  Lisa’s presence in town, with help from Jeanne and Mary, even allowed me to once or twice a year to have a three day overnight retreat at St. Francis of the Woods Spiritual Renewal Center in Northern Oklahoma. 

Son Micah, Becky and Chloe had moved from three hours away to one hour away not many years before this.   He came over, especially when there was a major Saturday commitment that took me from the house.  During those two years, Mary Ann had the joy of all her Children and Grandchildren nearby.  She spent much time with Lisa and the girls because of my work schedule.  Lisa would often include her in craft activities and food preparation.  Even with all the limitations, Mary Ann had a good quality of life for most of her years. 

Needless to say, it was a sad day when around the time of my retirement, Denis, Lisa and the girls moved back to the Louisville.  The agreement at Denis’s work had been for the time away to be two years only.  Denis also has a huge family (he is the youngest of ten children) who are all clustered very near Louisville.   Lisa, Denis and the girls have a wonderful community of support there. 

We returned to making trips to Louisville for as long as we could travel.  After a while the stairs in their house were too much for Mary Ann to handle, so the last time we visited, we stayed in an extended stay motel.  That worked well.  The last trip there was less than a year ago.  I will say more about that and some other travels in the next posts on this blog site.   

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They are standing outside the bathroom door with their little legs crossed.  Maybe that is exaggerating a bit, but not by much.  Two of our day trips included Granddaughter Chloe.  On the first one, we headed out to the Rolling Hills Zoo outside of Salina.  We spent many hours on the road in doing that round trip.  It was worth it.  The Zoo is very large with spacious areas for the animals.  The habitats are very nicely done, carefully mimicking as much as possible the environment that would be natural to the animals in it. 

It was easy to negotiate.  There was a tram with a spot for the wheel chair.  The paths were wide asphalt walkways that were very user friendly, except for the hills that were rolling up and down between displays.   Chloe loved it.  Mary Ann was not so much of a zoo person, but she seemed to enjoy it too.  It was a warm, but pleasant day.  They had ice cream in the concession area.   Enough said.

On that trip we did not have time to use the other half of our ticket, the one for the large building with displays of stuffed animals, and animated people in appropriate environments.  We had heard from others who had been there that the displays were worth seeing.   We made a second trip out there with Chloe later in the summer of that same year.  It was on the second trip that Mary Ann needed to use the bathroom after we had spent an hour or so walking around the displays.  The women’s rest room was huge.  There was a long wall lined with stalls.  Clearly they were prepared for large groups. 

When we entered the women’s rest room, after getting permission from the woman at the ticket counter, Chloe stayed at the door to keep people out while I helped Mary Ann.  It turned out to be a major intestinal event.  A great deal of time was needed to accomplish the task.  I decided to go out and tell Chloe that it would be a long time and check to see if there was anyone who needed to use the restroom.  There was — more than anyone, lots of anyones.   It was an entire busload of Second Graders, all in need of using the bathroom.  The girls were huddled outside the door. 

I decided to ask Chloe if she would just stand outside of the handicapped stall Mary Ann was using while the girls used the restroom.  Mary Ann just sat there until they were all done and the teacher had given the all clear for me to go back in and help her finish. 

It was the bathroom needs that complicated travel, but after surviving the busload of Second Graders, we were somewhat emboldened to head out in the car. 

Over the years we had made regular trips to Northern Illinois where we both grew up and had family.   As the disease became more difficult to manage, we were not always able to make the ten hour trip.  The last time we made that trip, we broke it up by staying in a motel and taking two days to do it.  My side of the family had gatherings every year or every two years around my Mother’s birthday, even after she was gone.  MaryAnn’s side of the family did not get together often for major reunions since two of her brothers were deceased and the third Brother had alienated himself from the family.  Whenever possible we would get together with Sisters-in-Law and as many Nieces and Nephews as could come.  We enjoyed those gatherings very much, as well as the reunions with my Brothers and Sisters and their families. 

One special treat was getting together with Mary Ann’s three friends from Fifth Grade on.  Sometimes we would get together with spouses also.  It was always wonderfully entertaining to see and hear the four of them together.   Mary Ann laughed more in a few hours with them than she did in the year or years in between the visits.  One way or another, we would be sure that the four of them had some time without any of the Spouses.  I don’t know what they talked about, but that is most certainly in the “better not to know” category. 

The three of them came to visit Mary Ann here a number of times also.  All of us recognized the power of healing those visits had for Mary Ann.  No matter how much she had declined, when they came, some sort of switch flipped and she perked up, became alert and communicative.  The last time they visited was after she had been enrolled in Hospice.  I described that visit in an earlier post.  We all laughed.  She had the closest I had seen to a belly laugh while we  sat at the Baskin & Robbins. 

Whatever toll the Parkinson’s took, it did not take away family and friends.  Travel was not easy, but as long as we could manage it, we headed out.  Some were day trips, some were long trips.  There will be more to come in the next few posts. 

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How is this for a retreat: Pay $50 for a couple to attend and then discover a $100 dollar bill in one of your notebooks.  I am not making this up.  I had never heard of these retreats when the mailing came.  It was pretty much too good to be true.  When I got the letter, I did not know about the $100 bill that would be in the notebook I received that first evening, but the rest of what was described in the letter was already too good to be true.  It actually was true, it was as good as it was too good to be — even better!

The location for the retreat was Big Cedar Lodge owned by the Bass Pro Shops.  It is located on Table Rock Lake, south of Branson, Missouri.  It is advertised as a Luxurious vacation spot.  They are not lying!   Remember the $50 registration fee?  The retreat was five nights and six days long, April 7-12, 2002.  When we finally drove in, we couldn’t believe our eyes.  Rolling hills spread out in front of us for hundreds of acres at the edge of the lake where all sorts of rustic buildings surrounded by gardens nestled among the trees and carefully arranged landscaping greeted us.  We registered and got our keys.  It took us a long time to find our room — ROOM? – it was a free standing cabin.  Inside was a large living area (with a large fire place), dining area (a large basket of fruit and packaged foods greeted us), full kitchen, king-sized bed, a bath area the size of the living room in our current townhome (of course with a huge jacuzzi tube).  The cabin had a deck area with chairs and a gas grill for outdoor cooking (not that we would have to do any).  The little card on the back of the door listed the room rate as $350 per night.  Clearly, there had been a much better rate negotiated.   

The retreats are called Grace Place Retreats.  They were begun by Dr. John Eckrich (M.D.).  He had been treating Lutheran Professional Church Workers in his practice for many years.  It struck him how stressed so many were.  He had a concern for the health of the church and realized that healthy church workers would be important for the church to remain healthy.  He decided to do something about it.  When the Lutheran Deaconness Hospital was sold some years before that, the proceeds became a benevolent fund that could be approached with grant proposals.  The front of the brochure we received in 2002 describes the Grace Place Retreats as: “A Retreat and Lifestyle Program Offering Integrated Health Skills to Lutheran Pastors and Spouses.”  It has expanded since then to all flavors of church workers.  Almost all of the costs of the retreat were underwritten by the Grant and donations to the Grace Place Program.

Then there was the food!  Big Cedar had five restaurants.  Our meals were catered in the area where our sessions were held.  There was not an ordinary meal to be eaten.  We were never disappointed, always impressed with the quality of the fare.  When we opened our notebooks and discovered the $100 bill, we were instructed to use it while we were there to treat ourselves.  Who are we not to follow instructions?  Mary Ann got a spa treatment of some sort and I got a massage.  Mary Ann was using a wheelchair at the time, and was always accommodated by the staff and the other participants on the retreat.  It was a good experience for her. 

Each morning there was a prayer, meditation, exercise time before the sessions started.  It was called Lutherans in Movement and Meditation.  After breakfast we always practiced Lectio Divina as a group.  That discipline involves reading the same Scripture passage two or three times listening differently each time with silence afterward to let the message settle in and take hold.  One of the days we held a juice fast, followed by breaking the fast with a light meal of bread and fruit.  Evenings included Faith Exploration activities.   One evening we went to a local church for Evening Prayer. 

Sessions focused on a variety of topics aimed at promoting good physical and mental health.  Some were on dealing with stress, looking at our various roles in life.  There was a very pointed session that addressed our marital health and habits.  The four themes addressed were: the priority of marriage, the permanence of marriage, the oneness of marriage, and the openness of marriage.  We were paired with another couple for the retreat so that we could have small group discussions on the various topics.  There was one afternoon that we were to take a sheet of instructions and spend the entire time in silent meditation.  That was the day of the juice fast.  One of the sessions had a leader from our national church body who talked about money management and planning for the future. 

One evening included heading into Branson to see the Jim Stafford show.  We both enjoyed the show (to our surprise).  One afternoon we had a tour of Dogwood Canyon.  It is a sort of private wildlife preserve that was very impressive.  We rode a wagon along a creek filled with visible trout (it was crystal clear) and through an area where buffalo and elk were out in the open.  In a sense, they were the observers and we were the mammals inside a protected area (the wagon).  Some of them came over very close to check us out.  They were huge!   On the afternoon for recreational activities, a few of us rented a pontoon boat and toured the lake on our own. 

Then there was the last evening’s reception and banquet.  We were treated like royalty to a multi-course meal in a banquet room that had the look of an Elizabethan castle banquet room.  There were gourmet appetizers, a lavish meal, each course accompanied by the appropriate libations. 

Dr. John accomplished the goal of giving us a refreshing moment of being affirmed and appreciated for who we were and what we were doing.  We felt valued.  The sessions brought attention to our self-care, physically and spiritually, and sent us away with tools for incorporating better habits into our patterns of living.  Mary Ann and I certainly gained from it.  Our life together was challenging with the Parkinson’s taking its toll on us.  That week lifted our spirits and brought a wonderful respite from the press of daily struggles.  I am very grateful to Dr. John and the Grace Place Retreats for caring enough to commit time an energy and resources to such a nurturing ministry.  It has provided a memory worth keeping.   

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We were determined to keep active to the extent possible.  Before the wheel chair was absolutely necessary, we headed to Jamesport, Missouri, Amish Territory, to stay at the Country Colonial B&B.  There were folks dressed in the appropriate garb, using horse and buggy transportation throughout the small town.  As is the case with most B&B’s, the rooms were upstairs.  Mary Ann was still able to do stairs at that time.  The room we stayed in had a fairly accessible bathroom.  The room was small and stuffed full of things.  The beds were always a challenge since they were very high.  Getting in and out could be a struggle.  There was always a little apprehension that she might roll on to the floor.  Gratefully, in all our visits to B&B’s that apprehension was never realized. 

The owner had a brand new wife from Russia.  She spoke very little English.  She served a very elaborate breakfast using multiple silver serving containers, each made expressly for what it contained.  There were muffins and pastries and boiled eggs and poached eggs and waffles and fruit, sausage and bacon.   I can’t remember all that she served, but it was many times what the two of us could eat.  When we were there, they were setting up for a mystery dinner that would be served there the next evening — clues placed all around the various rooms.

The evening before that lavish breakfast we were driven in a horse and buggy on a tour through the area, hearing about the various businesses and farms run by the Amish population in the area.  We happened to be there on a day of the week that the shops were closed, so we didn’ t get to see inside many places, but it was still very interesting.  There was one shop open when we left town.  It was filled with baked goods, jams and jellies. 

On another occasion we stayed at Ehrsam Place Bed and Breakfast in Enterprise, Kansas, near Abilene.  That B&B is now closed and has again become a private home.  There were artifacts and art work throughout the downstairs and upstairs.  Our room was huge, with a four poster bed, a sitting area and a balcony.  The property was filled with beautiful gardens.  There was a path that led away into a wooded area and looped around to the edge of the town.  As always, the breakfast was lavish.  The owner joined us at table since it was just the two of us there at that time. 

We were there at a very hot time, so unusual for a summer in Kansas!  In spite of the heat, we rode the Abilene & Smokey Valley Excursion Train.  Poor Mary Ann practically melted, but we rode the ten mile round trip.  We still enjoyed time we spent in Enterprise.  We decided that the trip would be better done at a cooler time. 

Then there was the Laurel Brooke Farm near Weston, Missouri.  It is seven miles outside of town, in farm territory.  The views are expansive, especially from the back deck.  There is a vineyard next door.  The B&B sits on 40 acres of land with a Pecan Grove and Orchard on their property.  By the time we made that trip, Mary Ann needed the wheel chair.  This was one of the very few B&B’s that have handicapped accessible rooms available.  The rooms were in a restored barn, with the dining area and souvenir store were on the first floor, along with our room.  The breakfast was good, not up to the standards of the other B&B’s but still very good. 

We headed in to Weston to visit some of the shops.  It is there that Mary Ann got what we called her Quilty Jacket.  It was her favorite from then on.  The shops were not easy to negotiate, but we did the best we could.  We ate at a restaurant that was laid out so that the diners could interact with the Chef.  He was noted for being very good.  We agreed with that assessment after the meal. 

Actually, our first B&B visit was in Cottonwood Falls, Kansas.  It was  The Grand Central Hotel, an old hotel that had been remodeled to serve as a Bed and Breakfast.  The Hotel has a very nice restaurant that also serves the public.   The breakfast included with the room was again very substantial. 

There is a stately old County Courthouse there, but it was inaccessible to Mary Ann’s wheelchair, so we just looked at it from the outside.  Our favorite spot there was a shop with a large loom in the main area. The owner used old denim to make all sorts of things.  There were lots of rugs and placemats.  We brought back from there a stack of placemats and went back another time to get coasters made the same way. 

The town sits in the middle of what is called the Flint Hills, rolling hills of prairie grass.  While it is private land with only a small space actually governmentally owned, the coalition of private owners and those concerned with the preservation of this only piece of natural prairie left in the nation, are keeping it protected from development. 

The Flint hills’ grasses have roots that go fifteen to eighteen feet deep.  They survived the onslaught of millions of hungry buffalo in earlier years.  Now cattle graze on large parts of the Flint Hills.  A part of the prairie is burned each year to remove sprouted foreign seeds that birds have brought in. 

Cottonwood Falls is the place to be in early spring when the burning begins.  There is a beautiful lake just outside of town.  We drove around it, stopped for a while for me to climb some of the hills by the lake, and just enjoyed the scenery. 

In spite of the limitations put on Mary Ann by the Parkinson’s we were able to carve out a good quality of life by making those short trips to continue to add to our memories.  The most spectacular Bed and Breakfast is one about which I have written more than once.  Since it was our last trip, just last October, I will write about it after writing about some of our other attempts at living fully and meaningfully during the Parkinson’s years.

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The last dozen years could have been spent cloistered at home, a prisoner to Parkinson’s.  We chose instead to live to the limits of our physical ability, maybe a little beyond.  It was Mary Ann’s resilience and our resolve that allowed a quality of life that was satisfying and fulfilling. 

In 1999, the Kansas City Crew, including the two of us decided that a trip to Alaska was in order.  It was John and Carol’s 35th Wedding Anniversary.  Gary knew someone who had been a travel agent and still had access to the last minute cheaper fares on the Princess Cruise Line.  Marlene was impacted by ALS as Mary Ann was by the Parkinson’s.  We just did it.  It was a wonderful, memorable trip.  We flew to Anchorage, enjoyed a Farmers’ Market there, drove to a lodge outside of Denali, where we sat on a deck in the bright sunshine at 11pm.  We bussed through Denali, seeing the spectacular sights, Mt. McKinley, Moose, Dahl Sheep and Bear Scat.  That is as close as we got to spotting a Grizzly Bear — okay with me.

There was the obligatory stop at Talkeetna.  We walked the street and marveled at the size of the flowers.  We made one stop that provided a scene that doubled us over in laughter.  There was a huge statue of a Grizzly Bear.  From the back, his stance looked exactly like a huge guy standing there relieving himself.  There is a picture of the four of us (the guys) from the back as we lined up on either side of that bear and mimiced his stance.  No, I am not going to post that picture.  There are former parishioners who read this blog.  The KC Crew threatened to send a copy to the church when the pictures came back. 

We drove to Seward and boarded the ship.  Glacier Bay was breathtaking.  The aqua blue eminating from the cracks, the snapping of the glacier as it moved, the rumble of the calving, a seal sitting on an ice floe, a bright day with a crisp chill in the air made that part of the trip the most vivid in my memory.  We traveled the train the gold miners used at Skagway, the White Pass Excursion Train.  It is impossible to describe the expansiveness of the views.  Everything in Alaska is huge! 

We saw the Mendenhall Glacier, already then having retreated a mile or two from the observation building that at one time was at the edge of the glacier.  We ate our fill of grilled salmon fillets covered with a sweet brown sugar glaze.  There was fresh Haibut — who knew it could have so much flavor when fresh from the ocean. 

The Cruise Ship, as always, fed us huge gourmet meals multiple times a day.  One of the KC Crew is fluent in Spanish, since she is from Puerto Rico.  At one of our first dinners, Maria spoke in Spanish with one of our waiters.  It was not long before it was clear what she had said.   That meal and every meal after that ended with my receiving a large chocolate dessert, at least one, no matter what else was served as the regular dessert. 

Charlie and Marlene, Mary Ann and I hung together since on account of the wheel chairs, we moved at about the same pace.  The ship was accommodating, and most of the places we wanted to see were accessible. 

Near the end of the trip we watched the Eagles in great numbers hanging around the salmon canneries in Ketchikan.  We ended the trip, sitting at a restaurant on Puget Sound enjoying one of the best views of the trip.  We made some wonderful memories as we ventured to Alaska and back. 

That was our biggest and most dramatic adventure during the Parkinson’s years.  There were many smaller trips sprinkled throughout the last ten or twelve years.  I will spend some time in the next post or two describing some of them.  I need to savor the good times we had.  Thoughts of how debilitated Mary Ann became can be overwhelming at times.  Remembering the ventures out somehow seem to provide a bit of salve for the still open wound created by her death.  It helps to remember that we made the best of a difficult situation and chose not to allow the Parkinson’s to rule.

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We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s.  KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away.   We could hardly believe it. 

Mary Ann’s symptoms had worsened as the medication regimen set up in the hospital in Tulsa before we moved to Kansas simply could not handle them.  In the very first appointment with the KU Med Parkinson’s Department Neurologist, Dr. Koller, he assessed her situation and added a medicine called Permax.  Permax is dopamine agonist. It works by stimulating dopamine receptors in the brain.  It makes the basic medicine, Sinamet, more effective. 

Within one month, the time it took to titrate the Permax to its therapeutic dose, Mary Ann’s symptoms were reduced to being barely noticeable.  That level of functionality remained for almost four years.  It was as close to a miracle as we have experienced. 

In addition, a group of ladies in the congregation welcomed Mary Ann and took a special interest in her welfare.  She developed friendships that ultimately grew beyond the fact that she was the wife of the Pastor.  Connie, wife of Pastor John who had retired from that congregation was also someone who chose not to be defined simply by the role.  She had set a good pattern for Mary Ann to follow. 

I found much comfort in seeing Mary Ann develop those friendships and experience new relationships.  She became much less intensely private and finally admitted that it was true when I told her “they like you better than me.”  She had always in the past contended that the church folks were only connected to her through my ministry.   That had changed with the folks at the congregation I was serving here in Kansas.  Also she realized that she had friends from former congregations who remained friends with her long after we had left those parishes.  They were truly her friends.  In spite of the Parkinson’s, the dozen or so years here before I retired seemed to be some of the best for her in some ways.   

We had found a townhome in a shared maintenance subdivision that was the right size (less than half the size of our home in OKC) with everything on one floor.   It had come on the market the day before.  We got in the first offer at full list price.  The realtor realized that we were very fortunate to get into a maintenance free area at that price.  It turned out to be a very wise choice.

Since Mary Ann could no longer work, eventually there was a small amount of disability income that she was awarded.  It helped us alter the interior of the home so that it was more user-friendly for Mary Ann.  Friends enlarged doorways for us.  A contractor who was a member of the congregation built a roll-in shower and extended the bathroom a bit to allow it to accommodate a wheelchair comfortably in anticipation of that need arising.

We replaced the carpet with one that did not resist her feet moving when they shuffled.  It was a firm enough weave to allow a wheelchair or walker to move easily.  Parishioners did the labor on finishing the downstairs so that live-in help could stay there if that was needed.  There were aesthetically pleasing grab bars that look like and can be used as towel racks placed strategically in the bathrooms, along with tall stools. 

We found a couple of portable electronic doorbell systems that we put together so that there were four buttons spread throughout the places where Mary Ann spent her time.  She could buzz me whenever she needed help.  All the various tools provided an environment that was comfortable and welcoming.  We made a very functional living environment for ourselves — with the help of a lot of parishioners.  We are in debt to all of them for what they have done to help us and care for us. 

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.

It was called Roman Nose State Park, named after an Indian Chief who had a Roman nose. I didn’t make that up.  Below you will find a bio on Henry Roman Nose.

I call it a rescue.  That is probably a little dramatic, but there is some truth in it.  Just days after I arrived in OKC to begin serving the parish in a suburb, the funerals started.  A number of the leading members of the congregation during my first few weeks there died.  The intense Pastoral care began.  That congregation taught me about Christian community, actually caring for others.  I did funerals for older adults, teen agers, babies, some via natural causes, some accidents, some violent deaths.  I still cherish a Pastoral stole given to me by a family who lost little Hillary just before she was due.

Doing Pastoral Care demands being on call 24/7 year round.  It was the most taxing and the most satisfying of the ministries in my portfolio.  One year there were a cluster of four funerals and a wedding in the span of two weeks including Christmas and New Year’s Day (the Groom chose that day so that he could remember their anniversary).  Without the addition of those Pastoral Care tasks, the Christmas season stretches most Pastors right up to the limit of their strength and stamina.

The combination of work demands and concern for what Mary Ann had to deal with took a toll.  Here is where Roman Nose comes into the picture.  One October, a Pastors’ Conference was approaching.  In the Oklahoma District the clergy were generally a pretty relaxed and congenial crew.  There would be time to relax and enjoy the Park, Roman Nose State Park.  The need for Pastoral Care intervened as a family lost a Loved One.  My hope was always to provide a healing presence to the degree possible.

Realizing that I would miss the break at the conference, I called to see if I could still get the group rate and just go on a Personal Retreat during the two days following the Conference.  The congregation Leadership fully supported that option.  I spent two days walking and reading and sitting and climbing and sitting and walking and reading all over the hills and valleys and bluffs of Roman Nose State Park.  I climbed over fences and through tangled brush in gullies.  I checked out the “healing tree” inside a protective fenced area, a place sacred to the Cheyenne who had lived there.

The place was a place of healing for me.  I can still picture the view as I sat at the very top of one of the taller hills, overlooking two small lakes.  A powerful Oklahoma wind was blowing in my face.  The sun was bright, the sky was crystal clear, the air crisp and fresh.  I felt what I would come to feel many times thereafter as I continued to go on Personal Retreats, relishing the solitude.  I felt whole, an intentional creation of a Someone who was providing me at that moment with the breath of life.  There was no distance between me and that Someone.

I had found great strength in Spiritual Formation activities during the years in the Kansas City area.  The Rescue at Roman Nose opened a new chapter in that Spiritual Formation.

Then came an experience that drew John and I together, finding strength in a regular time of Spiritual partnering and prayer as he ministered to his wife Sherrie through the last leg of her journey here.  I talked about Mary Ann and my journey and he talked about his and Sherrie’s.  The strength and courage of Sherrie became a source of strength for an entire congregation.  When I visited her, there would be a circle of three or four, maybe six or eight people in their living room.  She gave infinitely more than she received from all of us who gathered.  My ministry was profoundly impacted by Sherrie and John.

I can’t remember how I found out about it, but I am grateful that I did.  When we began taking Youth on Confirmation Retreats, DCE John and I took them a place called St. Francis of the Woods.  I have described it in great detail in earlier posts.  It has become a place of respite and Spiritual Renewal for me.  When I first went on a Personal Retreat there, the suggested contribution for a day and night’s stay in a two bedroom fully furnished cabin was $6.  There would be a loaf of home made bread waiting each time I arrived for a retreat.

Most of the times I went, I stayed two nights and walked for part of one day, a full day and part of a third day.  I read and walked and sat and did all the things I had done at Roman Nose.  The Orthodox Chapel, the woods and fields, 500 acres of working farm provided a rich environment for Spiritual Renewal.  Each time went I encountered that same healing recognition of being the intentional creation of Someone who chooses that I exist.

During my last two years in ministry in the OKC area, I attended two Spiritual Formation Groups (one each year) that followed the Shalem format.  The series was led by a local Pastor and Counselor who had been trained in the approach.  It involved a time of silent meditation, a time of journaling, and time for each person to share as they felt appropriate.

The Oklahoma years were an important time in providing a lab for learning to do Pastoral Care in a meaningful way, and providing a pattern of Spiritual Formation that provided the resources necessary to deal with the Bombing and Lee’s death as well as all that life had yet in store for Mary Ann and me.

Addendum:

Chief Roman Nose lived in this rugged canyon from 1887 until he died there in 1917. He was born in 1856 and given the name Woquini meaning “Hook Nose”. He grew to manhood within a hostile environment involving many Cheyenne raiding parties. In 1875 all warring Cheyennes returned to the agency at Darlington. Here he was arrested and sent to Ft. Marion in St. Augustine, Florida where he learned to speak, read and write the English language. He was then moved to an Institute in Virginia. Here he accepted the Christian faith and was baptized Henry Caruthers Roman Nose. His name Henry came from Richard Henry Pratt, the commander of the fort in St. Augustine. His name Caruthers came from Mrs. Horace Caruthers, his devoted teacher and friend in Florida. He learned tinsmith at a boarding school in Pennsylvania before returning to his homeland in 1881. Roman Nose discovered much had changed during the six years he had been away. Traditional Indian ways were almost nonexistent. White domination permeated all aspects of Indian life. Slowly he became disillusioned with what the whites offered. Roman Nose eventually spurned the white society. He left the agency and took his family to live in what is now Roman Nose State Park.

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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.

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.

This morning’s walk was dangerous!  I don’t know what I did.  I have gone around those bushes many times, once on my first pass.  This happened on the second pass.  The chirps did no damage, but the little winged attackers came mighty close.  I think they were tree swallows.  Otherwise the walk was again a pleasant way to become energized for the day.  One of my favorite sights is a field of round bales of grass/hay.  The field at Cedarcrest is in the process of being cut, rows of cut grass formed by a tetter, and a baler rolling the grass into the huge round bales, each apparently weighing around 2000 pounds. 

Today was furnace day.  I am now the proud owner of a 95.5% efficient furnace.  They should pay me to use it.  The installation demanded having the AC off all day.  The heat index was probably pushing 110 degrees.   I was happy to have reason to be out of the house a couple of times during the day.

This was the first actual exercise day.  There are parts of my body that I clearly have not used very much, since I was unaware that they existed.  I wonder what I will feel like tomorrow.  I feel very good about walking and working out as grief therapy.  I felt good after completing both today. 

I went to another support group this afternoon.  There must have been fifteen or sixteen people by the time all had arrived.  The Leader had told me that there would be ten or twelve when I called.  I think she was surprised too.  This group had many first timers who had lost a loved one just weeks before, mostly Spouses, two had lost their Mothers. 

There were lots of tears as well as some laughter.  Of course the most beneficial element is the freedom to speak openly and freely to people who understand without explanation the nature of the pain.  Some there had lost a spouse two or more years before.  They had lots to share about what was helpful to them in the healing process.  They were reassuring that survival is possible, that the pain does become much more manageable with time. 

I don’t suppose there was anything I heard that I didn’ t already know intellectually.  In years past I have told people who were grieving those same things.  It was helpful for me to hear them again from the mouths of others, now that my attention has been captured fully.  The people there confirmed the value of some of the choices I have made, writing, exercising, getting to support groups.  They helped me try to get some perspective an uncomfortable experience in the recent past. 

When I returned home, I always check the front door on the outside chance someone has sent something.  There was a box with a soft sided cooler in it, containing fifteen or twenty different packages of Mrs. Field’s snack-sized cookies and brownies.  Wow!!  What a treat!  The note was signed simply, “COME SEE US.”  It is from some wonderful, caring friends from KC who now live in a beautiful spot on a picturesque inlet of a large lake in Oklahoma.  I will do as they ask. 

Tonight some of the tasty food from the freezer (brought by former parishioners and neighbors around the time of Mary Ann’s death (I have to keep saying that until I get used to it) was added to lots of veggies, sweet corn, zucchini, onions, tomatoes, bread from the Farmer’s Market.  Were it not for the quantities that I consume, I would be pretty healthy, slim and trim.  Well, there was the dish of ice cream with some of the snack cookies. 

I just returned from a spontaneous trip to look at the most remarkable show in the evening sky.  I walked outside to look at the legs of a huge rainbow melting into a reddish cloudy center.  Opposite that rainbow, which was resting against a deep, dark grey background, was a bright red and turquoise sky separated horizontally (bright turquoise on the bottom and equally bright red on the top) by a bank of cloud, smooth and dark.  To the right of that was a jumbled puffy strip of dark clouds hanging just above the horizon.  Some of what I am describing I saw while standing in the street in front of my house.  As I stood in the street, there was some bright cloud to cloud lightning followed in a fraction of a second  by an ear-splitting crash of thunder that sent me back to the house.  It seemed far too close for comfort.  Then I realized I was free to hop in the car and go to my favorite spot to look at the sky with an unobstructed view.  Some of what I described above is what I saw from that hilltop.  I debated about even trying to describe what I saw.  If someone were to paint the scene, critics would probably say it was a contrived mix of elements that could not be so at the same time in the same sky.  I am not a skilled enough writer to describe it with the elegance and clarity it deserves, but it was too remarkable not at least to make an attempt.

I think I will stop with one post tonight.  I still hope to make the new blog domain name simple and accessible enough to begin separating out these posts from the continuing story of Mary Ann’s and my marriage.  These posts are intended to describe the beginning of my attempt to build a new life.  The continuing story of our marriage is the therapeutic reclamation of a history of a full and meaningful life with someone I love deeply.  The love has not died.  It is still as strong as ever.  That and the memories, I get to keep.

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.

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