“sometimes i sits and thinks…”

Musings of releasing oneself from the need to be productive.

I had a poster when I was a teen with this quote: “sometimes i sits and thinks and sometimes i just sits” 
― Satchel Paige or A.A. Milne, depending on your source of information.

I ponder now why that saying intrigued me at the time. I am guessing I thought it was about being a thinker, a deep thinker. Perhaps a philosopher. What I know is it what very different from what was expected of me. I have vivid memories of several incidents of my parents yelling at me and my sibs when they came into the house from the morning milking and finding us not working, thus being lazy. They had gone to the barn at 5:30 am, so the affront was we were still in bed, after 9 a.m., or sitting around the house in our PJs. One morning, Dad berated me for playing solitaire, while still in my PJs. So perhaps the poster’s declaration, the permission, of the activity of non-activity, was a unique thought for me. (After becoming a parent, I realized my parents didn’t tell us their expectations of us, gave us no direction about chores or behavior they wanted. Maybe if they had given us some guidance we would have behaved differently? Who knows.)

When I was a child, my mother shared a hurt of hers, that a relative told her father that her then-fiance was lazy. My mother cared deeply what other people thought, and spent a fair amount of her farm life aiming to disprove any laziness existed on our farm. Overtly doing nothing useful did not further her goal.

My mother never had idle hands. After we bought a TV, when she watched in the evening, her hands were busy darning socks, knitting or crocheting her latest creations. She taught me to knit and crochet (not how to darn socks though!) so I soon had busy hands while watching TV.

I enjoyed the sitting and thinking part of life, especially as a student. I loved pondering ideas teachers introduced. Two of my favorite classes at college were Ethics and Philosophy. My friends grew so tired of me repeating my newfound information and revelations from Philosophy class they banned me from postulating at mealtimes. After college, I enjoyed Bible studies, professional workshops; any form of information dissemination and discussion. I savored the passage in the song “If I Were a Rich Man” from Fiddler on the Roof:

” And I’d discuss the learned books with the holy men
Seven hours every day
That would be the sweetest thing of all “

I too, dreamed of sitting around and pondering those learned books. That aspect of seminary was one I relished when I thought of attending seminary. (I wanted to attend seminary since I was a kid. I didn’t end up going but held on to it as a potential for decades.) I did attend graduate school for a master’s in social work and thoroughly enjoyed the classroom again. I even took another ethics class!

As I grew up I followed my parents’ example of ceaseless work. But not by living on a farm! I avoided getting serious with any guy, even those handsome ones, who were becoming farmers. I had no interest in the consuming life of a farmer’s wife. It sounded limiting to live in one place, and there was a whole world out there. I also observed that my parents were not happy when they lived on the farm and left when I was a teenager. Their contentment seemed more apparent when they were no longer dairy farmers.

After my first job out of college, as a church youth worker, the rest of the jobs I pursued were Monday-Friday, with weekends off. But I filled those weekends with avid church involvement, then later added marriage and children. When I started working in the school district and had ten weeks off in the summer, I saw that as an enormous amount of time. I immediately signed my five-year-old daughter up for four sessions of swim lessons, as I had no idea how to have that much unstructured time with my child. I even volunteered to pick up a friend of hers, which added at least an hour to the summer-long swim lesson venture.

I kept up this frenetic pace, working full time, having two children, and certainly not slowing down when being a single parent. I remember one weeknight: the children were in bed, it was nine p.m, and I was thinking of the tasks I felt I needed to complete before allowing myself to turn in. I paused, took stock, and realized I was exhausted. It struck me in some cultures, some parts of the world, when people are tired, they go to bed. I realized that was a reasonable response to being tired, but I don’t think I allowed myself to go to bed. And now I read articles supporting the benefits of a good night’s sleep, such as this one.

All of my life, however, I have stopped to observe a sunrise, a sunset or a rainbow. Usually with exclamations of appreciation and encouragement of those around me to enjoy it as well. If we move, my husband and I both want a clear view of at least the sunrise or sunset from our new abode. And a place that delivers the sunsets we get in Kansas. Sweet stuff!

Sunset at Baker Wetlands, Lawrence, KS

Gradually, my buy-in to the busyness of life started shifting. I heard the term, “be a human being, not a human doing”. That intrigued me and hearkened me back to my lovely poster. I no longer wanted to live by my parents’ perceptions of laziness. I didn’t need to face their demons or live according to their fears. Several things happened: I left my small church, where I volunteered for a variety of responsibilities, and joined a big church where less was needed of me, and anonymity was possible. I married someone who does not enjoy attending a multitude of activities, especially where a lot of people are gathered. I started getting more selective of outings, especially on weeknights. And I realized I appreciated the spaces between activities, even started craving the downtime.

When retirement was imminent, I was often asked what I would be doing. I boldly and emphatically replied, “Nothing!” Even though I gave myself permission to do nothing, a lifetime of inculcation to be a productive human being did not evaporate with retirement. It reminded me of a passage in the popular 1970 romance novel “Love Story”. Oliver and Jenny, the main characters, have fallen madly in love, and marry. They had sex prior to their marriage but felt guilty about it. After they marry, Oliver observes that the act of marrying did not automatically turn off the guilt associated with having sex. I am thinking this is true for me with retirement: it has been a process to turn off the expectation that it is necessary to be productive, to be that human doing. Instead of feeding that notion of productivity through working a job, I have now translated to being productive in our home and it’s upkeep. I haven’t thrown myself into it, so it is my current focus of guilty thoughts. I am hoping to find an equilibrium, less dissonance, between my personal expectations and my actions. Winter is an easier time to reduce the nagging thoughts, as there is little yard work to be done.

Last year, a friend introduced me to a series of books I am finding absolutely delightful. I had been reading a ton of murder mysteries series and had commented to Ken I would prefer reading a mystery book sans someone being murdered. The series my friend recommended is the No. 1 Ladies’ Detective Agency, by Alexander McCall Smith. The protagonist, Precious Ramotswe, lives in Botswana. With her father’s inheritance, she starts a detective agency. I have read 15 books, and so far, no one’s been murdered. Sometimes the interactions or the characters’ behaviors in the books feel trite, but then there are jewels like this, from The Minor Adjustment Beauty Salon (No. 1 Ladies’ Detective Agency, #14): “There was no reason why one should always be on the move. That was half the trouble with the world, she [Precious Ramotswe] thought: not enough people took the time to sit down for a few minutes and look up at the sky or at whatever it was that was before you—a herd of cattle, perhaps, or a stretch of bush dotted with acacia trees, or the sinking of the evening sun into the Kalahari. “

Each book has similar sentiments, which I am eagerly reading to help flip that switch in my brain that productivity is the only operative way to live. In this series, Mma Ramotswe pairs her thinking time with her red bush tea, which I had not heard of. When I investigated, I found it is called Rooibos tea by the transplanted Europeans and is from a particular bush in South Africa. Here’s more information for tea lovers. I easily found the tea locally and was delighted when I enjoyed the taste immensely. It’s my cue now, to brew a cup of Rooibos and contemplate the ease of just sitting and being. I have not released all of the work ethic inculcations of my childhood, but I am eager to continue to “work” at it.

On a Warm Day in June

I wrote about my brother Bob’s illness and subsequent death in The Winter of Grief.What I saved for this story is events I experienced, especially in the last year, involving my brother. Here’s the backstory: When Bob was diagnosed with Parkinson’s and Dementia in 2010, he started his care in a nursing home in the small, rural town where his youngest son lived, in Ord, NE. Once he was stabilized he was able to move to the Assisted Living facility in that town. He was sixty-five years old, and noted he was the youngest person there, by at least ten years. Periodically he would talk to me about moving to Kansas. He would also talk to our brother in Colorado about moving to Colorado. Neither of us were able to help him move. I considered the potential of Bob moving to my town and state. Since the major portion of his medical insurance was state-residency based, I did not think I could take on the task of helping him gain residency, thus medical benefits, here. My home state of Kansas had a back-log of Medicaid eligibility, with no promise of that changing. We live in a two-bedroom house, and my son was just starting high school. My stepson lives with us in the summers. Basically we had a full house and couldn’t bring Bob here. This left me feeling lacking and wishing I could be of more help to him. We visited him once a year at that time, even having an extended family gathering at a bed and breakfast in Ord in 2013.

In 2016, Bob’s son left Ord and moved to Grand Island, NE. Bob believed he had no connections to keep him in Ord, and wanted to live in an urban area. We helped him by researching and visiting facilities in Lincoln, NE. We found one that met his needs and wishes, and he moved to Lincoln. Since he was now over one hundred miles closer to me, I hoped to visit him more often. My daughter and her toddler traveled with me that June, to celebrate Bob’s birthday. We took him to a popular restaurant for lunch. He had to traverse a short, steep ramp in the restaurant to be seated. He was using his walker, but started falling forward. Two diners were in range, quickly sized up the situation and reached out to steady him. I was shaken by the potential of him falling and realized I did not have the expertise to lift him off of the floor. I hesitantly drove him out for supper, and later to a twelve-step meeting. They were uneventful and he loved every moment. I was thoroughly exhausted at the end of that birthday celebration and realized I was no longer comfortable transporting him.

Bob enjoyed the city, but his health declined, his needs increased, which meant he no longer qualified for assisted living. He moved to a nursing home in Grand Island, NE at the end of 2016, to be in the same town as his son.

When I retired later in 2017, I considered ways to be involved with his life. I asked Bob and his sons if I could participate in his quarterly Care Plan meetings, via conference call. They were fine with that; Bob indicated he would find my input helpful.

In my social work career, I had attended a multitude of meetings for children that had some of the same features as an adult’s care plan meeting. I knew these meetings could either be a place of a dynamic group process of relevant action plans being shaped or a perfunctory meeting, convening for the sake of meeting state and federal requirements. I had experienced both types. I was hoping for the former. The angle I decided to focus on in his Care Plan meetings was activities meaningful to Bob. As he had been a Lutheran pastor, church and theology was still an interest and passion of his. He had also attended twelve-step support groups and continued to find that fellowship important. I knew he had found rides to both in Ord, but that had faltered when he moved to Lincoln. Our brother in Lincoln gave him information to make those contacts himself, but we didn’t realize he was not able to function at that level anymore. It was so hard to gauge his current capabilities and what he could no longer do independently. Our brother had just begun to make contact for Bob at a local church when Bob moved to Grand Island. The Lincoln pastor contacted a pastor in Grand Island, and we were aware a pastor was making visits to Bob. But he was no longer attending church. His physical decline was enough to not task volunteers with helping him in and out of vehicles. To engage in worship, the activities director had Bob be in charge of starting the DVD player of a freshly burned DVD of a local church service, delivered to the nursing home. When we talked about this, he acknowledged he had little theological alignment with the church but appreciated having exposure to church services. He also helped lead a Bible study. The activities director, our brother and I all tried to set up ways to be participate in Twelve Step groups in Grand Island, but nothing ever worked out.

In June, 2018, my husband Ken and I were heading out for our daily walk. It had been pretty hot, so we thought of going to our local indoor track, but decided to face the heat and walk in our neighborhood. We have several different routes we take, but on the one we chose that day, about a mile into the walk, I saw a car with a Nebraska specialty license plate that said “ELCAREV”. Not being a congenital Lutheran from Nebraska, as I was, I explained to Ken this plate indicated the car belonged to a minister of the Lutheran branch called the Evangelical Lutheran Church in America (ELCA), which was the brand I had spent most of my life attending. And that REV stood for Reverend. As we started walking away, a woman walked out of the house and towards this car. I called out to her, “Cool license plate; where do you live?” She did that thing I so recognize; she started qualifying that her town was small, and I probably wouldn’t have heard of it. She said she lived in Ord, NE and is the minister at Bethany Lutheran Church. I responded, not only had I heard of Ord, but we had been there to visit my brother, Bob Larson. She said, “I know Bob, he is a member of my church!” She then explained she had lost touch with him when he moved to Lincoln. Her home office (It’s actually the Nebraska Synod Office, for those of you who like accuracy and relate to church jargon. I like deciphering jargon.) had recently contacted her to let her know Bob’s current address. She said she made the drive to Grand Island weekly for text study (They also call if Peri-copes study. More jargon!) and had begun to visit Bob and serve him communion. I was washed with gratitude to know Bob was being spiritually nurtured in a manner familiar and dear to him.

Rev. Glenda explained her two adult sons live in Lawrence, but in two different parts of town. She just happened to be at this son’s house, and she just happened to decide to go to her car to retrieve her water bottle. When we just happened to be walking by. We were all in awe of this harmonic convergence and all tearing up. We exchanged phone numbers so we could continue to communicate about Bob.

With this dramatic insertion of my brother into my local life, I decided I needed to contact his nursing home to find out when his next Care Plan meeting was scheduled. I was surprised to learn it was the next week, on Wednesday, June 20th! Two of my cousins I lived down the road, so to speak, in Nebraska, so I asked them for lodging and a visit. They were both available on the dates I needed! The trip was falling together seamlessly.

I saw Bob on Monday, asking him what he wanted addressed at his Care Plan meeting on Wednesday. He gave me several items; some made sense to me, some didn’t. But, overall, we had a coherent conversation. I told him of meeting Rev. Glenda and he acknowledged she was visiting him. I then drove further west, to stay with my cousin.

A year prior, my nephew told me Bob wished, when he died, to have a Lutheran funeral service and to be buried at the same cemetery as our parents. It’s a rural cemetery, formerly connected to a German Lutheran Church and parochial school. I knew nothing about the process of getting a burial plot there, but my cousins did. I asked them and found out it was simple to reserve a burial plot; one cousin gave me the contact person.

Tuesday was a day to hang out with my cousin hosting me, and we decided to visit the cemetery, to see our parents’ graves, and take a look at available burial spots for my brother’s request. We found a spot right beside my parents.

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Our parents gravestone. In the background is a corn field with rotational irrigation equipment. So apropos for the multitude of NE farmers’ resting place.

She suggested we visit the local funeral home, to gather more information about burial at Immanuel Cemetery. The information from the funeral director was specific and not as complicated as I had imagined . I later passed on the information to my nephews, for use in that unforeseen future.

The next day I said goodbye to my cousins and drove back to Grand Island, to attend Bob’s Care Plan meeting. Bob seemed disoriented, so I was glad I had had the conversation a couple of days prior, to share his concerns. After his meeting I drove to a local fast food of Bob’s choice, Runza Hut, a local favorite, and brought it back for Bob’s lunch. He enjoyed every last bite.

I drove home via Lincoln, NE, so I could have supper with our brother. Knowing he is proficient at wood working, it occurred to me to ask him to consider making an urn for Bob’s ashes. He gave me a decisive yes. I really considered this planning for an event years away, but was grateful plans were falling in place so well.

After that, when I called Bob the conversations had digressed with the progression of his dementia. In November of 2018, my nephew let me know Bob was placed on Hospice care. They said he had declined, but they did not see death as imminent. He basically needed more daily care. I texted Rev. Glenda to let her know they had included chaplain care in the hospice services.

I wasn’t involved in his September Care Plan meeting as they had staff changes, who didn’t know to contact me. For Bob’s December Care Plan meeting, I again participated via conference call. The goals for his Care Plan were now comfort care, not rehabilitative care. This was hard to hear, but helpful to face the reality of Bob’s condition.

I was still surprised, though, when my nephew’s wife called to tell me in early January Bob was not eating and declining. I texted Rev. Glenda to tell her Ken and I were heading to Nebraska on a Sunday to say our goodbyes. Glenda did not anticipate coming to Grand Island at that time. A few hours later she texted me and said she was coming! This meant she was driving the eighty miles one way, after presiding at two church services that morning. My brother and his wife from Colorado came, my nephew and his wife were there, and Bob reveled in being surrounded by family. My nephew, his wife and I took opportunities to talk with Rev. Glenda about funeral services, within the confines of limited funds. Rev. Glenda offered her services and the services of her church in Ord with no need for payment. We were deeply touched, and relieved.

It turned out to be our last time to see Bob as he died six days later. My nephew and his wife worked with Rev. Glenda to arrange the funeral service. Our brother was able to build the wooden urn in time for the funeral service. The inurnment of ashes at the cemetery on the plains would wait for better weather.

Our family gathered, and Rev. Glenda a officiated a service honoring Bob. She told anecdotes of his church life in Ord; stories new to me. She told us when she moved to Ord she was still doing graduate work. She asked Bob to read her papers and said he gave constructive feedback. When Bob died Rev. Glenda informed the NE Synod Office and the Assistant to the Bishop participated in the funeral service. None of Bob’s family even considered this as an option, but we knew Bob would appreciate the acknowledgement of his ministry. And we were grateful for the immense care Rev. Glenda gave to the details and her ministry to us. Rev. Glenda turned out to be a blessing to my brother and his relatives. Much of this falling together because Ken and I decided to take a walk in our neighborhood on a warm day in June.

The Winter of Grief

On January 4th, my nephew’s wife called to say my brother Bob was not eating and was declining. I hadn’t seen him since last June, and in December was told he could no longer participate in the phone conversations I had just had a month prior. I knew I needed to visit him. I remembered August of 2014, when my sister-in-law called, saying my brother Paul was riddled with cancer and was expected to die within the week. I waited three days, and while driving to Omaha to see him, my sister-in-law called again to say he had died. I regretted waiting. I wanted to avoid more regrets, so on January 6th, my husband and I made the two hundred mile one-way trip to see him. When I walked into his dining room, he saw me, lifted his shoulders in a happy shrug just like our mother, smiled and said, “Sister”. We hugged and spent time together, being joined by his son and daughter-in-law and another brother and his wife. His pastor even joined us, making an eighty-mile trip to do so. We had had as satisfying a visit as allowed by the narrow scope of topics with his dementia and the Parkinson’s limiting his speech.

The round trip was easy as the weather was mild, the roads were clear. It met my needs to talk with him, hug him, and once again to tell him I loved him.

On Friday, January 11th, I went to bed with the knowledge my brother Bob was not expected to live through the weekend. I informed my siblings through our private Facebook group and email. My urge to immediately drive the two hundred miles to his nursing home again, to hold his hand, was tempered by inclement winter weather. On Saturday at 3:30 am, I startled awake from a dream: I was following a leader through an outdoor amphitheater, with the goal of going to the woods beyond. The leader was already out, motioning me to join him when I reached the top of the seating and the sloping of a roof. As I started to pass through this narrow opening, I realized I was walking into a maze of spider webs. All kinds of sizes and types of spiders fell on me, with spider webs and spiders entangling in my long hair. I quickly backed up, looking for other openings, but they were too small. I awoke, without finding a passage.

After a few more restless hours of sleep, my nephew’s wife called to tell me Bob had died. And my dream made sense; my brother had moved on and I could not follow.

I made a list of my siblings, to not have to trust my memory to remember which of the seven I had called. I added his oldest son on the east coast and our cousin in Nebraska. I was attentive to the time zones they each resided in and called accordingly. To tell them our brother had died was difficult enough, but to tell my other brother that Bob died on his birthday and his granddaughter’s first birthday was a difficulty of its own. I actually found it wonderful to talk to each of my siblings, even for the occasion of delivering our sad news. I am not a regular phone call person and rely on Facebook and gatherings to communicate. After I had completed the list, I found I was exhausted. My adult children were sympathetic and assured me they would attend Bob’s funeral service. My son would travel east from Wyoming; my daughter lives in the same town as I do, but planned to travel later, so she could take less time off, and see her young children before she leaves them for two days.

The service was set for January 23rd, which left time for long-distance travel plans and returning to the regular tasks of life. I made lists to help me focus. I found myself inattentive, ending up with a broken fingernail, an unexplained scratch, and a blistered finger doing a task I had safely done for a decade. I remembered the time I slammed the trunk of the car on my finger, almost twenty years ago as I grappled with the news of my father’s terminal illness. I realized I needed to pay attention if I wanted no further injuries. Or car accidents. I have been involved in three car accidents, none of which were deemed as my fault. I was rear-ended twice in the months after grappling with the pain of divorce and the death of what I had hoped to be a marriage for life. The third car accident was after my mom died. Again, technically not my fault, but these happening in times of grief are notable.

On Monday, January 14th, a friend visited us, and I calmly told her the stories. She listened and shared her stories. I was fine. I joined my book club for breakfast the next morning and found myself interrupting, bringing any topic back to my brother’s passing. When I got in my car, the tears flowed. I texted some friends, who answered with compassionate wisdom. I had coffee with them on Friday, realizing I had once again monopolized the conversation, but they are close friends and wanting to be with me in my grief. I ran to Natural Grocers and discovered a massage therapist was giving free, 20-minute massages. I passed her by as I usually do, then realized this was a gift. I turned around and took her up on her gift. I explained I was grieving, may cry, and that I knew I was carrying grief in my body. In those sweet twenty minutes, she was able to put a dent in the boards usually referred to as shoulders. While massaging my back, I realized I was carrying old griefs as well as this recent grief. I knew I could let the old griefs go. She was as skilled of a listener as she was as a masseuse. I left somewhat lighter than I had come.

I knew I was improving when I could actually complete a couple of tasks on the list in the next days. I started a list of tasks to do after we returned from the funeral service, as the business of life continues on.

I consulted with my sisters about what they were wearing. I grieved that my oldest sister would not be attending. And I decided to continue a project of making sister bracelets for our sisters-in-law. I had made bracelets for my sisters last April, using our mother’s necklace as a base. It was therapeutic to focus on creating for my family while facing our loss. My daughter and I had manicures together; something we do for important occasions.

The day prior to the funeral, my husband and I set out. We drove west, starting with mist, which turned to rain, then freezing rain. When we turned north, the rain changed to blinding snow swirling around us. We wondered why we hadn’t left a day earlier and were relieved to arrive at the motel where we joining my extended family. During the storm, I tearfully told my daughter she should not start her drive that evening, meaning she would not be coming to gather with us. When the interstate closed due to ice and accidents, we both knew she would stay home. She is a great comfort to me, and I knew I would miss her presence.

The funeral was still an eighty-mile drive away from our motel, with the remnants of packed snow on the road continuing to slow our travel and keep us focused in the moment. The sun was shining and the weather predicted above-freezing temperatures.

The pastor gathered us prior to the funeral, reading scripture, telling us some stories, and giving us directions. When she asked if any of us wanted to share stories about our brother Bob, I drew a blank. Bob was twelve years older than me; our childhoods barely intersected. He left for college and only returned a few times a year after that. It didn’t seem the time to tell that when I was a young adult he insisted we no longer keep our childhood abuse a secret, to ensure the next generation did not experience abuse as well. That we became close as adults around this process and later sharing our journeys of recovery from alcoholism. Our talks were from the heart, about how we were living day to day. When our conversations were no longer mutual sharing, and his behavior became self-serving and weird, my interest in communicating with him was squelched. When I found out a couple of years later he had Parkinson’s and dementia, his behavior had a context. I then looked for opportunities to visit him at his assisted living facility. Every time I saw him, his functioning had changed, had declined. Since his diagnosis in 2011, I have been slowly losing our former connection. There were vestiges. We could still talk about the tools of recovery together and how we were using them today.

So no, I had no quick stories to tell. His grandsons were able to tell a couple of stories; ones I had not heard before. One of my brothers told the pastor we had time that evening to share more stories. The moment passed. My emptiness did not. During the funeral service, I find myself in tears. My son put his arm around me to comfort me. I leaned into him, appreciating his comforting. We drove back to the motel on sun-dried, clear roads, enjoying the rural scenery sparkling in the snow.

Back home, and a week later, I was preparing for a short stay of my son. As I converted my craft room back into his guest room, the sadness returned. Sam was going stay to briefly with us, bringing us his car and his cat to care for while he is gone for a year-long overseas assignment.

As we moved on to grocery shopping. I realized I was in an active grief space. I couldn’t face the analytical decisions of choosing produce. I tell my husband I will pick up the yogurt and the tahini; the easy tasks. As I held the quart of yogurt, I imagine I drop it and hear the sound as it hits the floor. The stunted sound of plastic making impact on a cement floor. I see the yogurt splatting, then oozing out. I consider letting go of the yogurt and actualizing this sight and sound. It seems like it would be a relief, that it might help break the tension of my sadness. I resist, knowing it is not really a reality I want right now. But I can’t locate the tahini. What I am locating is my new source of grief: I am now facing my son going overseas for six months, to a military base I am not allowed to visit. We will be able to communicate, but I won’t be able to be in the same space as him. It seems too soon to face this, with the recent passing of my brother. I also realize my son is not dying, and that I may be getting this all mixed together. I return to my husband, who has made all of the produce-purchasing decisions and ask for his help in finding the tahini. He takes me to the correct aisle. He also picks out some chocolate peanut clusters. I resist inhaling them all on the way home and eat one when we get home, remembering overeating does not assuage grief. I looked at the list of tasks I want to complete before Sam comes home and realize I am done with the list for the day. And grateful I still have tomorrow.

When Sam arrives, his nervous excitement about his new adventure helps me feel happy for him. We spend a day together with his sister and her family. The next day I drive him to the airport through winter mist at 4:30 am. I plan to walk in with him, to see him through the security process, but he chooses to tell me goodbye at the curb. Surprised we are parting, the tears flow. I gather myself for the still-winter-dark, overcast drive home, knowing I will be home before it’s without-a-sunrise daylight. Unexpectedly, I find myself relieved that his twelve months have now started. I had had eight months of anticipating this assignment. As it turned out, the anticipation was worse than the actual event. Similarly, I realize I had been dreading my brother’s death since I found out he had Parkinson’s and Dementia. Knowing both of these conditions could go on indefinitely, I now marveled my brother had been able to be released from them in less than a decade from his diagnosis. I find some momentary peace, knowing I will have more grief moments to experience. I take pictures of Sam’s cat, so I can send them to him. And know I will be ready to face my list of tasks tomorrow.

I hear what you hear!

My experience with hearing aids and tinnitus.

In March I wrote about my discovery of having tinnitus and hearing loss here:  Do you hear what I hear?

The next day I got my hearing aids. I kept a journal for in my initial days of wearing hearing aids, which is following.   I have worn them for ten weeks now, and am committed to continuing to wearing them.  They have improved my interactions with other people immensely.  I am not straining to hear now.  I didn’t realize I was straining, but I was.  They give me some ease.  And have diminished the tinnitus.  I am grateful.  I am also getting closer to a place of accepting this permanent condition of tinnitus.  The despair is greatly lessened.

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In a tent with my grandson. Hair tousled, but hearing aids intact. Do you see the hearing aid? I don’t either:

Journal Entries:

Day 1: Krysta [Dr. Green, audiologist] fitted me for hearing aids this morning. She somehow calibrated them to my hearing loss. Looked pretty complicated to me; she rattled off stuff to her intern about how she set it. She showed me how to take care of it. She gave me a pack of batteries; evidently, I will need to change the batteries every 7-10 days. Kinda surprised how quickly the batteries run out. I need to remember to open the hearing aids every evening, so the batteries are not working. The hearing aid case is kinda cute.
So, my brain will now get signals my cochlea has lost. With the amplification from the hearing aids, I will hear things I haven’t heard for a while from my mild hearing loss and will hear things my brain has learned to screen. My brain will evidently learn to screen them again, but until my brain learns this, I will hear a lot.
She calibrated both the same, but I asked her to turn up my left ear. Now I am wondering if I was right.
So, my first reaction to the hearing aids working is that it sounded like there’s a microphone inside my head. Kinda weird. That was this morning; it still sounds like that this evening.
When I scratch my head above my ear, or move my hair away from my ear, it sounds like amplified sandpaper scraping. That’s a bit intense.
When I sniffed, it’s like I am in a tin building, with the feedback, echoey sound of tin. That’s a bit much too.
When I drove home from the appointment, I heard the turn signals in a clear, amplified way. I kinda like how crisp they sounded. I turned on a CD in the car and really enjoyed the music. I think I wasn’t hearing the treble very well. In recent years I found myself really tuning in to the bass line of songs, which I had not done previously. I wonder now if I did that because I had lost hearing the upper notes. I used to comment to Ken that the stereo wasn’t balanced. Now I think it was my hearing loss that was contributing to that perceived imbalance.
I started the day as a cicada day. That has varied, but now, in the evening, the cicadas are back. A couple of times I felt like my ears were itching and wanted to take the hearing aids out. But I got through it. I am motivated to wear them so my brain will quit sending these signals, giving me the ringing in my ears.

I asked Krysta if the tinnitus would return when I took the hearing aids off at night. She said that varies for people.
After I left the fitting appointment today, I teared up, thinking there may be hope of not hearing the ringing in my ears anymore. I felt very grateful Krysta is serving people in need like this. She’s a very intelligent person and could do anything she wanted. I am glad she wants to help people with their hearing issues.
But, I am tired from this very new experience. Hearing aids and still having the tinnitus sounds. Tomorrow the repair of our house begins. He’s starting in the attic and there is no place in the house I won’t hear it. I may have to leave. When Ken was moving the furniture in the attic tonight, it sounded very loud. Hard to tolerate sounding loud.
Ken observed I had improved mood today. That there is hope is encouraging, I’m thinking.

Day 2: It is amazing that I hear more clearly. It does feel like the inside of my head becomes a microphone. Just kinda weird.
Woke up with cicadas. I’ve had my hearing aids on for forty-five minutes and the cicadas are greatly diminished. Cool.
I don’t have any running around scheduled today, and am attending to business: writing out a bill, making phone calls, etc. I think it’s cus I am less tired with the cicadas being in the distance.
Took a walk in the wind today. I was concerned I would hear wind against a microphone effect, but not at all! What a relief.
Didn’t have to leave with construction sounds. That was a relief. The hearing aids definitely amplify the sound, but it isn’t grating.

Day 3: When I woke up this morning the cicadas were active! I was very motivated to get my contacts in so I could put on my hearing aids. (my regular glasses’ bows are too fat with my hearing aids) I have had them on for an hour and a half and they are starting to diminish, but still present. C’mon, brain!
It’s 12:30 pm and the cicadas have not subsided so far. Bummed.
When I drove my car this afternoon, I didn’t have heat or the CD on, and I heard creaks and groans I hadn’t heard before. Krysta said she had a client who told her he arrived to his appointment with a Rolls Royce and left with a jalopy.
Evening: I have been discouraged, teary today with the cicadas not diminished. I am exhausted, which I get on the days I am discouraged. The backs of my ears hurt, where the glasses and the hearing aids meet. Ken suggested that I’ve worn the hearing aids three days, and two of the three days have been less tinnitus. A good point. If it was good before, it can be good again. Today is hard.
8:30 pm: I just checked my left hearing aid; the battery case was not closed all of the way. I don’t know if it was that way all day, or when I took them out at the dentist’s office. But it gives me hope this was the reason I had more cicadas today. Ken was super relieved to hear it too. I was so touched by his investment in these hearing aids and his concern about my despair with living with the tinnitus. I just so want to not have to live the sound 24/7.

Day 4: Started reading the hearing aid manual today. There’s dots on the inside of the battery red for right, blue for left. Good! I thought there should be a system.
Put on my hearing aids right away, to make up for yesterday’s “brain training loss”. I can still hear the cicadas, but it’s way in the background. Turning into the ringing sound, which is less.
I was with Becca and Teddy today. I felt free to lay on the floor and wiggle around with Teddy. I took my glasses off, but the hearing aids were fine.
Becca asked me if I can now handle the sound of crunching chips. I forgot I had said that, on day 1, when we ate at the Jimmy John’s by IKEA. Yes, I can. However, I am still choosing to eat applesauce instead of an apple. Odd.
Today I am hearing an airy sound in my left ear. I had Krysta turn up the left one more than the right. I am questioning that decision.
Ken and I went to Menards, Natural Grocers, and Sprouts. I am not getting too much sound in the stores. Besides Jimmy Johns, I haven’t been to a noisy restaurant yet. Will see how that goes.
In thinking about hearing the turn signal, I realize it’s a more crisp sound. I formerly heard the turn signal, just not all of the tones. I like how the hearing aids crisp up what I’m hearing. This mild hearing loss is so fascinating. I had no idea I had lost any hearing. Once I adjust to them, I anticipate enjoying hearing conversations better. Makes for an improved quality of life.

Day 5, 11 am: I went to sleep and woke up with the cicadas today. I was motivated to put my hearing aids on this morning. The cicadas haven’t gone away, but they are definitely in the background.
My full prescription glasses have big bows, and I haven’t found a comfortable way to wear them and my hearing aids. So, to put my hearing aids on, I need to put my contacts on first. (I wear glasses with my contacts, to correct my farsightedness.) I am starting to feel like a bionic woman: I have all kinds of devices for daily living: glasses, contacts, retainer to keep my teeth straight (spent money and pain getting them straight; not gonna do that again!), hearing aids, and my four crowns are imminent to increase to six crowns.
I am telling my brain it doesn’t need to search for sounds when I am going to sleep. It hasn’t got the message yet…..
9 pm: Cicadas most of the day. Was helpful when Sue and Lisa were here, cuz I didn’t think about it. And it wasn’t quiet.

Day 6: So yea, I was disappointed about the cicadas yesterday. Then I took off my hearing aids and realized the hearing aids helped them not be so loud. Cus they were VERY present without the hearing aids. I can say with confidence the hearing aids are lessening the tinnitus sound. Cool.
I did take a Benadryl to get to sleep last night. Two nights ago my VivoFit3 said I got a little over 3 hours of deep sleep. I stayed in bed until 8:30 am today and got over 6 hours of deep sleep. It seems a good night’s sleep aids in my ability to tolerate the tinnitus.
I feel like I have made progress today in coming to terms with my hearing loss/tinnitus. I don’t feel like resisting so much, as just leaning into it and even playing with it. Kind of a relief.

Day 7: I didn’t take a Benadryl last night. Took a little bit to get to sleep, but I had a good night’s sleep: over 6 hours of deep sleep again. This is such a mental feat; if I can approach bedtime with a positive outlook about the tinnitus, I can get to sleep. When I feel defeated, despair, the tinnitus is all-consuming. Here’s hoping I can continue to have a positive outlook!
11:30 am: Hearing the tinnitus this morning, but it’s background. So struck by the clean, crisp sounds I am getting with the hearing aids. The sound quality is improved.
Last night we were babysitting Teddy and after he was in bed we were sitting in the quiet living room. I heard a chirping sound that I thought was an electronic sound, from the kitchen area. But it was the chirping of an actual bird at twilight. Such a crisp sound!

Day 8: I took a Benadryl last night. The cicada noise was present and I was worried I wouldn’t fall asleep easily. I think a bigger factor in getting asleep is not using electronics right before going to bed.
BUT, this morning I woke up to only the faint, high-pitched ringing. If this is all the sound I would have from tinnitus, I probably would not have sought help. I put my hearing aids on right away, in case the reason for this lessened sound IS the hearing aid use. Don’t know, but am eager to test this theory.
6:30 pm: The left hearing aid needed a new battery today. Just changed it. Looked at the manual to be sure. Easy peasy.
The tinnitus sound is minimal today. Such a relief.
Ate in a restaurant today. Couldn’t hear Lisa any better, but it didn’t catch unwanted noise. I am thinking my hearing aids are not my grandparents’ hearing aids!
AND, the right hearing aid battery now needs to be changed.
At knitting group tonight, I shared my tinnitus, hearing loss, hearing aid tale. And gave 3 of Krysta’s business cards to three people. Cus we all know someone who has tinnitus or may have a hearing loss.
It’s after 10 pm, and I am hearing ringing. Not a bad day though. Fairly encouraging.

Day 8: Woke up to faint cicadas. Now just have the faint ringing. I think the reduction in tinnitus may be due to the hearing aids. How to know?
I had lunch with Kathy yesterday at a small, not-busy grill. I found when I was listening to her, I was watching her mouth (to lip-read). I told myself I may not need to watch her mouth and looked at her eyes instead. I was right! I could hear her just fine!
While we were there, Kathie from knitting group was there with her husband, who has tinnitus. I love to show people my hearing aids, cus I have to make an effort to do so. Since I have long hair, it really covers them up. But even if I had short hair, I think they would not be very noticeable. He said he would make an appointment after they returned from their travels. If I can usher folks with tinnitus to help, I will do it!

Day 9: Woke up to active cicadas this morning. It’s almost noon, and they are still present, but in the background. I want to make the connection with tinnitus and sinus issues (I have a sinus headache this morning) but neither the audiologist nor the literature supports this.
We are having a lovely Spring day and I have a positive attitude today. I am realizing I was low energy with the advent of the tinnitus and the diagnosis. A bit depressed. And it happened in winter when I don’t get outside as much. Probably not linked. I probably would have been sad to get this life-long condition any time of the year. Just thinking. Glad my mood is picked up today! Yard work is happening this afternoon!

Day 10: Last night I took a Benadryl. I told myself it would help with the poison ivy spots I have on my arms. But I was mainly motivated to have it help me be drowsy enough to fall asleep with the cicada sounds. It does work. But I would rather fall asleep without that drug; feeling psychologically dependent.
At the end of the day yesterday, I was aware of the hearing aids in my ears. I think I am always aware; haven’t tuned that out yet. And when I’m tired, anything is harder to deal with.
Here’s something that is happening: when I wake up, in the middle of the night, in the morning, I don’t hear the tinnitus as the very first thing. It is not my first thought anymore. Progress!
I was out of sorts late morning, early afternoon. Ken and I ate lunch at a restaurant as Arnold, who is repairing our house, was turning on a compressor to work on a ceiling. Arnold suggested we leave, and I was all for it. The amplification with my hearing aids makes an inside noise like that a challenge for me.
I told Ken at lunch I could hear the cicadas over the din of the restaurant. He said he didn’t hear them…
I am realizing it’s harder to tolerate music playing while I am listening to someone talk. I hope I get over that.

Day 11: I put my hearing aids in (is that the correct preposition, term?) the latest in the morning I have yet; 10 am. I heard the cicadas in the night, but this morning it was just the ringing sound. I put them on/in, before we meditated, as I figure they help screen out the tinnitus. I think it helped. We hadn’t meditated for several days. When that happens, it sometimes takes me a little while to get in the meditation groove. So I did intentional breathing. Which also distracted me from the tinnitus.
I went to a small party tonight. I did fine with hearing and conversing. I think these hearing aids are helping!

Day 12: I heard cicadas all day. I am getting used to it; doesn’t super bother me. But, took a Benadryl, to help me sleep through the cicadas and the poison ivy.
I tried on tops today at Kohls. I am impressed by how well the hearing aids stay in place.
We went to a Pokemon Go! community event. I thought later I might have been the only one playing Pokemon Go! wearing hearing aids. I could be wrong. Can’t see them, so don’t know!
It’s official: Ken is tired of me saying, “Did you hear that?” I’m not.

Day 14: Didn’t write anything yesterday. I think it’s an indication I am getting used to these hearing aids.
This morning I tipped the battery out of my hearing aid before I closed the compartment. After getting on the floor, using a flashlight, I did not locate the battery.  They are so little!
I took a Benadryl last night. I am telling myself I will use them while I have the poison ivy. I woke up at 3 a.m. and had trouble falling asleep again. But it wasn’t due to the tinnitus.

Day 15: Yesterday, all I had was the faint, high-pitched ringing. It’s easier for me to ignore. I did NOT take a Benadryl and fell asleep just fine. Today I have had cicadas all day. So discouraging. I have been off-kilter emotionally, but I don’t think the two things are related.
I made up a new term of one of my hearing-aid-wearing issues. I call it ear canal fatigue. I think my sensory issues come into play. I just need them out of my ears sometimes. But I haven’t allowed myself to do that, as I want the most brain training I can get.
Going to call Krysta tomorrow, with these questions:
Anything I can do about this ear canal fatigue?
How long do I need to wear them each day for brain training?
How long does brain training take? Am I making too much of brain training?
How far in my ear should I be placing the probes?
They stink! Any suggestions?
Is it okay to use earbuds and take my hearing aids off?

Day 16: Had cicadas all day again. Maybe not as loud. My ears just ached, so I took the hearing aids off a little after 8 pm. I wore them for 12 hours today.

Day 17: Had some tinnitus sounds this morning, but I have not had much, or any, cicadas. Such a relief!

Day 18: What can I say? Active cicada sounds all day. I don’t get this. I’ll be okay, but it’s hard when one day it’s so minimal, then back.

Day 19: Started the day with loud cicadas. At Women’s Group, Jane said tinnitus worsens with stress. Great. Well, I guess it’s a great time to be retired and have less stress.

Day 20: Travelling, flying with hearing aids for the first time!! Made it through security; didn’t need to take the hearing aids off.
When my ears popped, I had a moment of panic that it would affect my hearing aids. Not so much. Nothing affects those things!
Cicadas all day. Ugh.

Day 31: Last week I had times of only the high-pitched noise, which is so far in the background I don’t notice. I have been using Benadryl more times than not using it, and don’t care for my dependence on it. Yesterday was a high-pitched day, not a cicada day. I took the hearing aid off an hour or so before bedtime and the cicadas returned. (Or did they return because I was tired? I don’t know.) I was tired, like I-had-already-taken-a-Benadryl tired, so I decided to not take it. And I fell asleep through the cicada noise just fine.
I think I have a new phenom happening: I think the hearing loss was screening out sounds (I first wrote noises, cus my audio sensory issues take sounds and make them noises.) so my sensory issues were less. I have had times when music is on and someone is talking, and I will have to turn off the music to be able to concentrate.

Day 33: Yesterday was another cicada day, for sure. I hadn’t slept my usual 9 hours and worked at ACT testing. The tinnitus was relentless. I still got to sleep. I am able to tell myself I can get to sleep through this, and then I do. I feel like the anxiousness about having this condition is lessening.

April 30th: Saw Krysta today and asked my questions. She thought my right ear canal had some redness and looked irritated. Her solution is smaller earpieces. So far I think they are a great improvement. I don’t feel the urge to itch my ear. Which isn’t easy, by the way.
I asked her to recalibrate the left hearing aid, so now both hearing aids are the same. My initial reaction is that it is helping tone down the sensitivity to sounds.
She said she didn’t think using the hearing aids would make the tinnitus go away, but definitely lessen it. And that is what I am experiencing. So nice to have relief. I am motivated to wear my hearing aids all of the time, to reduce the tinnitus and now also, to hear people better.

I have quit taking Benadryl and am getting to sleep just fine.  I hear the tinnitus sounds, and tell myself they will be less in the morning when I wear my hearing aids.  And I go to sleep.
I realize now I have had to work hard to hear what people have to say. What a relief, to put some ease in having conversations!


Do you hear what I hear?

Last July I pulled a back muscle and was taking muscle relaxants.  I thought the constant sounds of cicadas in my head was just one funky side effect of that unpleasant medicine.  Because the cicadas in my head left before the ones in nature made their annual entrance, I didn’t think more about it.

This January I laid around when I was coaxing a nondescript virus to go away.  And heard the cicadas again.  I concluded this happened when I was sick, or sedentary.  I mentioned it to the doctor and she volunteered to refer me to an ENT.  We threw the term “tinnitus” around.  I declined the ENT referral, deciding the cicadas were a part of being sick and would fade away.  The virus did its eventual exit, but the cicadas remained.  They weren’t always present; they traded off with a ringing sound that was softer.  I realized I probably had tinnitus and told my children about it.  My daughter has a friend from high school who is an audiologist. She suggested I contact her for an ENT recommendation.  I texted her and she recommended I see an audiologist first.  I made an appointment with her.

Prior to the appointment, I allowed myself one look on that bain of medical folks’ existence, the World Wide Web.  I chose the Mayo Clinic’s site to read up on tinnitus.  Here’s the Mayo Clinic site.

I know several men who have tinnitus and all of them said there is no treatment for it. They said they learn to tune it out. I felt some despair because I knew it was a permanent condition. I also thought people got it who were around loud machinery, shot firearms, and/or went to loud concerts. I did none of those activities. At first, I couldn’t imagine living with this ever-present sound.  I love the quiet; my favorite conditions for sleeping are pitch dark and no sound.  When I was growing up on the farm, we didn’t have air conditioning so we slept with the windows open.  I remember having trouble sleeping when the irrigation pump ran at night.  I could sleep through intermittent or pitch-varying sounds, but a consistent sound was a challenge.   When I was a teen I stayed at my aunt’s house for a couple of weeks so my cousin and I could catch the early morning bus together to do corn detasseling.  There were four people in the house, in four separate bedrooms and they all played different radio stations while they slept.  I struggled to fall asleep the entire time I was there.

I came to understand I probably have sensory integration issues, with auditory being an impacted sense.  When I briefly owned a Harley, one of the first things I requested was to remove the unique Harley pipes because I couldn’t tolerate the noise. I knew it was sacrilege, but that patented, loud sound was wearing to me. I learned to wear ear plugs when I took longer motorcycle rides.

I find white noise distracting instead of soothing.  When I am home alone, I rarely have the TV or any music playing.  I love quiet space.

So, to face the potential of permanently having sound INSIDE MY OWN HEAD that I couldn’t regulate/control was a sad prospect for me.    I have noticed when I am busy, I don’t notice it so much.  When I am tired, it is more noticeable, and in general, I get irritated more easily. When I have an active cicadas-in-the-head all day, I tire faster.  The days of the ringing sound are less challenging.  Always, in the evening, when winding down and tiring, the sound is ever-present.  Some nights I have difficulty getting to sleep.

One statement in the Mayo Clinic’s explanation of tinnitus is that its onset often happens at age 60 and up.  I am just now 61 years old and was shocked that I was getting an age-related condition.  It occurred to me I may continue to face age-related conditions.  I know, I am sixty-one; and yes, this had occurred to me before.  But it was theoretical; this is getting real.  When I felt fearful I coached myself, that I could make it at that moment, and could make it until I had my appointment with the audiologist.

Ken went with me, which the audiologist welcomed, to get his input as well.  The first part of the appointment was the interview.  The audiologist was clear the ringing in my ears is tinnitus, but the intent was to find out why I have it. I said I had read it could be anything from wax build up to a brain tumor.  She asked the appropriate questions to rule out a medical referral. She confirmed that I already have audiological issues of auditory sensory integration and trouble with persistent sounds.  Both of these have technical names, which I promptly forgot.  I said I had had a hearing test with the school district’s audiologist around ten years ago, as my daughter encouraged it. I thought she mumbled; she thought I had difficulty with my hearing. At that test, I found out I experience hearing loss with ambient sounds: sixty percent loss of hearing in one ear and forty percent in the other. At that time I realized I read lips to compensate for hearing in noisy conditions.

The next portion of the appointment was an ear exam.  I was disappointed to find out I did not have wax build up, as that would have been such an easy fix!  After that, an intern did the actual hearing tests. She was in another room, speaking to me through a microphone, while I wore hearing devices of some sort.  She was behind a double paned, tinted window so I could see her, though not clearly.  For the first test, I was to indicate hearing a tone by pressing a clicker.  We were clicking right along, at fairly regular intervals, then I  heard no tone.  A little bit of time would pass and I would finally hear a faint sound again. I would click, and the intern would write something down.    I found myself leaning toward the direction of the sound, as though that would help me hear it.  When I couldn’t hear the tone, I could hear the cicadas in my head and felt sure that was the cause of missing those soft tones. I knew I was missing tones, and I became sad and teared up. Most of the sadness was the realization I was not acing this test.  I am chagrined to admit this, but it was not because I was missing sounds, but because I take pride in performing well on tests.   At the end of this test, the intern asked if I was doing okay, and I lied and said I was.  I immediately thought of the students I had worked with for a couple of decades who struggle with test-taking.  It wasn’t a case of not knowing the material, but attempting to demonstrate their knowledge in the method given would run into their learning disabilities.  They knew they should be able to answer the questions, that their classmates could, and they couldn’t.  Their own kind of hell that they had to face in their whole school experience. I have been a fairly good test-taker and am not used to struggling.   That day, I got a small taste of what they showed up for all of the time.

The next test was the intern saying a word at a time, and me repeating it back.  As the volume diminished,  so did my ability to repeat the word back to her.  It was an illuminating process.  I found myself guessing at some of the words, and quipped, “This is a great example of how miscommunication happens.” or “Could you say the word in context?”  I finally gave up when I couldn’t make an intelligent guess at the word.   I realized quickly though, there have been a lot of times I have strained to hear a word, or sentence, for a while now.  And that I have been working pretty hard to hear people speaking.

The audiologist explained their findings: I have a mild hearing loss.  This news did not hit me too hard; it was actually a valid explanation of my experience I had just had with the testing, and in recent times, trying to hear all of the words in conversations.  She did tell me I have every right to advocate for people to talk to me face to face and explain I have a mild hearing loss. I also have permission to ask people to turn down the volume of TV’s, etc in restaurants.  If not for me, she asked me to do this for all of the people who struggle with hearing and other unseen conditions.  My husband recalled a time I had already asked a restaurant to turn off a TV, so he didn’t think I needed much encouragement to advocate for myself.  I agree, but it is useful to know why I have felt the need for this.  Having a mild hearing loss is much better than that I am persnickety.

I was most interested in the audiologist’s recommendation for the tinnitus.  She said something like this:  the tinnitus is my ears’ attempts to hear as they are aware they are missing sounds.  Or something like that.  I will have to ask her again, because I was absorbing a fair amount of information and emotions at the time, and didn’t get it all.   She believes hearing aids could actually help this type of tinnitus.  I am getting fitted for them, and am too scared to hope they will really work.

I told my siblings my results, finding out one of my sisters and one brother-in-law have this condition as well.  They have not been offered any treatment options.

In the meantime, I recognize I am going through the stages of grief, in living with this new condition.  The day after seeing the audiologist, I had coffee with two former co-workers, now co-retirees.  One was sharing about the next step in her cancer treatments.  She has a type of cancer that is challenging to treat and she was going to have an appointment the next day to find out if a tumor was responding to treatment.  I asked how she was feeling about it and she said: “It is what it is.”  Whatever she found out, she would then do what was indicated.  I hesitantly told my friends my new-to-me condition.  I acknowledged it wasn’t a huge medical challenge and a lot of people have it.  My friend said, “Yes, you still have your ear.”  She is so right!  I have every confidence I will get to that matter-of-fact acceptance, but I am not there yet.  I am experiencing all of the other stages of grief, in varying ways and in varying degrees.  Sadness and shock are my most prevalent places right now. A success is when I haven’t thought about it for a period of time.

I have told myself I will face this with grace and dignity.  Then I remembered who I was. Ha! I am not grace-ful OR dignified! No, I am facing this a day at a time, feeling whatever I am feeling at the moment, finding bits of humor here and there, stumbling along looking for a new equilibrium.  It ain’t always pretty, but I am certain I will land on my feet once again.  In the meantime, look at me when you’re talking to me, and have patience with me if I ask you to repeat yourself.

Gotta Catch ‘Em All! (my ventures with Pokémon Go )

On December 31, 2017, I decided to quit playing a game called Pokémon Go .
A little about Pokémon: It has been around since February 1996, six months after Sam was born. It has been a part of my life around seventeen years, due to Sam’s interest as a young child. When he used the word “evolve” appropriately in a sentence at six years old, I was impressed at his use of such a sophisticated word. Then I found out the Pokémon characters evolve; he had learned the word from the cartoon! I bought him the cute Pokémon  paraphernalia, attempted to watch the Pokémon cartoons with him, but kept a disinterested distance from it. His older sister Becca watched with him, and can still to this day sing the Jigglypuff Song.

Not that I recommend this, but as a parent of children in the technology/gaming age, I groused about this phenomenon, tried to keep it at bay, and hoped their dad would become the gaming/technology expert. When my sweet, gentle daughter of eight years old  played a game on a friend’s Atari system she quickly became the aggressor, yelling “Kill, kill!” I was mortified. That was all I needed to know, I thought. That stuff breeds aggression and has no place in our home. I did learn in the Pokémon world the characters battle, but no one is killed. That helped me a little bit, and Sam played the Pokémon games on handheld devices.  As the gaming world continued to evolve Sam showed a lot of interest and his older sister kept abreast of the world with her friends. She has astute eye-hand coordination and could beat the more-practiced friends of hers fairly quickly.

Seven years ago, I married Ken, who is a gamer. I saw his video game playing to not be all-consuming for him, and a hobby I could tolerate. Ken wanted to find a video game we could play together. I found I enjoyed Mario Kart, about twice a year, and sometimes played a game with him called Terraria. It was okay, but not compelling.

Sam was fourteen when Ken entered our lives and was interested in moving beyond his GameCube and into the X Box or PlayStation realm. I was still fairly uninformed, and  wary. I let Ken guide our purchases for Sam, relieved to be with someone who could reasonably navigate this.

In July 2016 a different kind of Pokémon game came along called Pokémon Go. It is an Augmented Reality (AR) game played on smartphones. I describe AR as an animated GPS system, overlaying the whole game on the GPS map of where you are currently holding your phone. You can also switch to your phone’s camera, with the Pokémon in the picture.

A screenshot of a Charmander “in the wild”

The player can catch the Pokémon that appear, and collect the items needed to catch them with, from PokéStops . If you are not familiar with the game, or the concept, here’s a quick read on it: Pokemon Go explanation on Wikipedia

Pokemon Go decorations and favors. We made Pokeballs out of Ping-Pong balls, and a Pokestop from a hula hoop.

I had the same disinterested approach to Pokémon Go, for the first three weeks it was out. Everyone around me was playing it: my husband, children, son-in-law and local extended family. So much so when Becca offered to host a birthday party for Sam and his uncle, she used  Pokémon  Go as the theme. Because she is a skilled planner and delegator, she had all of us help make the decorations and party favors, which was a delightful extended family effort. Guests ranged in ages from two to sixty-four years old and she entertained them all. Becca created two scavenger hunts: one for the youngsters at the house, and another for the adults to walk or drive to places to collect Pokemon. Surrounded by a myriad of enthusiasts, at an absolutely enjoyable party, it finally peaked my interest.  I installed Pokemon Go on my smartphone that evening.

Ken and I started exploring Lawrence through our  Pokémon  Go games. The game added incentives to play daily and I was on it! We had a lot of fun exploring the components of the game, but mainly the part of collecting the many Pokemon. It became a part of my daily life, always ensuring I had some way to play. The only time I didn’t play was three days in July of 2017 when we were at a family gathering in Colorado. Not because we were at a family gathering, but because we had no phone reception at the retreat center in the mountains. No phone data, no Pokémon to catch.
Sam quit playing after a few months as it is more fun to play with someone, and his friends quit playing. Becca and her husband continued to play until a few months ago. As a gamer, Ken found the game to be lacking in interesting, engaging play, or metagame, but would usually play when I asked.  We didn’t play every aspect of the game, but I enjoyed the collecting  aspect, spinning the PokéStops and doing gym battles. To do these activities took going to the places they were placed. Driving downtown Lawrence was rich with PokéStops, as they are attached to placards, murals, and statues.

Downtown Lawrence in Pokemon Go AR

Ken would drive the 20 mph speed limit, and I would spin PokéStops for both of us when he wanted. He wasn’t always interested. I was always interested.

When I was 25 years old, a couple of professionals told me they believed I was an alcoholic. I was very shocked, but took them seriously and have been in recovery since then. I immersed myself in what this meant and came to understand I may have an addictive reaction to things other folks don’t. I understood abstinence and finding alternative approaches to day-to-day living to be key in my continued recovery. I wanted to live a life free of addictions, so paid attention to my other addictive behaviors. I gave up cigarette smoking a year later as I  had an exquisitely addictive response to cigarettes.  At one time I drank a pot of coffee in the morning, then Diet Coke in the afternoon.  This consumption created physical problems. I have had times of abstaining from all caffeine, but am now able to drink one cup of coffee a day, and a couple of cups of tea. I eventually gave up drinking diet soda, and have a soda as a treat about once or twice a year. Refined sugar is like mainlining. Okay, I have never mainlined, but I have an I MUST HAVE MORE! reaction to refined sugar. I love my sweets, so I have done a lot of experimenting with natural sugars to keep them in my life. I may be playing with fire; not willing to admit that yet.

I knew I had the capacity to be at least compulsive about playing games like solitaire and have allowed myself that indulgence. I have chosen to not gamble as I have heard from other folks who are addicts that gambling is very addictive. I just don’t want to find out for myself.   I have found I enjoy my life without addictions being active.  I like being aware, fully participating in my life, even in the challenging times.

Last December, I was able to observe a few things about my Pokémon Go playing I would describe as red flags for addiction:

-Playing daily was a priority; I felt an urgency to play.
-I hate to admit this, but I played while I was driving. Rarely when I was actually driving, but at every stop light. This is called distracted driving.
-We based our walks around my desire to play Pokémon  Go. Ken was mostly cool about it, but sometimes it wasn’t an interest of his. One day, I was fussed at him as I perceived him to be a barrier to me playing Pokémon Go that day. To be clear, that’s not what I told him but I realized later that was the at heart of my fussedness.
-I would play Pokémon Go all of the time we were driving somewhere. Really. All of the time.  Highway and Interstate driving doesn’t work by design, but rest stops have a lot Pokémon Go gaming to play.

This all may sound trivial, and  over-analyzed. I don’t believe I need therapy, or a Pokémon Go Anonymous group. But my commitment to myself is to live my life free of addictive behaviors and being intentional and present in my life.  Playing Pokémon Go was going down that slippery slope towards addictive behavior. It was certainly compulsive. It was clear it was affecting my primary relationship and impairing my driving. I am relieved I did not cause a car accident due to my distracted driving. So I decided to abstain for the month of January.
Here’s what I learned:
-I was actually seeing my surroundings through the Pokémon Go’s Augmented Reality screen, an alternate reality! When I first drove  sans Pokémon Go, I realized I saw the sights of Lawrence as PokéStops . Whoa!  In about a week’s time, my brain started seeing the regular sights of Lawrence.
-When Ken was driving, I would still pull out my phone and look at any amount of apps on my smartphone. Ken commented he appreciated having me back as a companion in the car, and I decided my phone stays in my purse while I am in the car, as a driver or a passenger.
-Ken also observed I would take a long time to get out of the car when we arrived at our destination as I was still playing Pokémon Go. “Gotta catch ‘em all!” I would say. I am now more attentive to what we are doing. Together. Like what I want to be. Being with the person I’m with.
-I started playing Pokémon Go on the cusp of my last year of working, prior to retiring. It was an innocuous distraction at the time. It served the function of distracting me from the huge change of being retired. But it became a disproportionate part of my life. I have far more interests than this game to pursue.
-This is a great outdoor game if you live in year-round mild climates where walking is reasonable. Playing this game in the winter in Kansas puts it into a driving game, not a walking game. Playing it daily was challenging, and sometimes foolish. Last year I drove in icy conditions to play the game. Not a reasonable decision.
-I now look at Ken’s game playing as more typical, and a  model for me. I have been able to put Pokémon Go back in its proper perspective and decided I could play it in February. But I didn’t for several days.  I am encouraged, as yesterday I went to a coffee shop to write on this blog. While driving there I remembered the shop has a mural, which means it is a PokéStop, and told myself I could play Pokémon Go there. I became so engrossed in writing this, I forgot to play! When I  realized that, I was delighted as this is what I want. The game is  an optional, light activity, not a priority.
-I think my experience of finding this game a compulsive activity, and Ken not being compulsive, is probably the case for other folks as well. It is an individual experience. In the past, I wanted to vilify gaming, but that is too sweeping.  Kids and adults have varying reactions to games. What I know is I found this particular game was compulsive for me. Mario Kart isn’t. I don’t know why, and may not  find out. Since I am an aware adult, I can take responsibility to regulate myself. Kids probably benefit with guidance from adults, and need different help, depending on the kid. Just speculating; I haven’t researched this angle.

Ken and I talked about playing Pokémon Go in the future at the Lawrence Arboretum, as it has great sidewalks and lots of PokéStops . (Our neighborhood sidewalks take a fair amount of attentiveness when traversing. Okay, our neighborhood sidewalks are crap.) The Arboretum is attached to a long walking trail so we can play Pokemon Go, then put our phones away and get our heart rates up. I have found endorphin’s are something healthy I crave, and will definitely continue to pursue those!

My first holiday in retirement

My observations of my first holiday in retirement.

Gluten-free Pumpkin Pie
My daughter makes excellent pies from scratch. This year she decided to make a gluten-free pumpkin pie for me. She was deliciously successful!

  • I like love it!
  • I learned something about my thinking process. When I didn’t prepare a dish I wanted to have for the Thanksgiving feast, I found myself thinking it was because I didn’t have time.  I realized that was a default thought, and of course, I had time! More accurately: I didn’t think of it in time, or I didn’t prioritize it. Which was also true before retirement. By stripping away the easy default of not having enough time, I am now realizing what was probably always the case: preparing that dish wasn’t a priority. No further explanation required.
  • I still procrastinated. Having more time at home didn’t change that. I found the gluten-free stuffing recipe I wanted to try this year, a week or so ahead of Thanksgiving. I did buy the ingredients earlier but didn’t think through the steps of the recipe until the day before. Which culminated in preparing stuffing at 10 pm on Thanksgiving Eve.
  • I was very animated and happy at the Thanksgiving gathering with family and friends (framily, as my very close friend, calls us). It could have been from that delicious latte I consumed, but the extrovert in me is so delighted to be around people now! I worked in a high school with over 1,700 students and around 100 staff. There was rarely alone time and always someone to talk to at that job. I now luxuriate in the quiet space, hanging out with my also-retired husband. I love it, but I also immensely enjoy when I hang out with other people.
  • The biggest change I noted was the post-Thanksgiving time. I didn’t rush into the Christmas season. Facebook posts were popping up of Christmas trees, trimmings, and baking occurring in other homes, but I felt no urgency. I had time the Monday after, the Tuesday after, every weekday after, to decorate, Christmas shop, or Christmas bake. Or not.  A sweet outcome of my husband’s retirement is that he has completed our Christmas present shopping! He’s great at it and is not a procrastinator. The only shopping I need to do now is gifts for him. The Monday after Thanksgiving I just took a breath and had a leisurely lunch with a self-employed friend. I basked in the luxury of retirement and sent loving thoughts to all of the people in my life who returned to work that day.
  • (I’m writing this two weeks after Thanksgiving and still no Christmas decorations are up. Reference that earlier procrastination point.)

Carry on!

A colleague wondered aloud at an event we coordinate together,  how they would carry on without me when I retire.  I was baffled.  I see these colleagues as very competent, and I have no worries.

Yesterday I worked with another colleague to create wording, policy really, for a service offered through a council on which I serve.  This service had not been utilized for quite some time,  and the people who originated it no longer are a part of our group.  It occurred to me I could help with this, since I am now one of the few from our group who remember some of the details of this service.  When we sat down to do this, the words flowed easily for us, and in forty-five minutes we had a credible draft.

I have always said I have the ability to B.S. in writing, but I make light of my skill by saying that.  Here’s the thing: I am good at writing professionally. And I have other skills.  in the last two weeks I have facilitated two types of meetings  I had not done before.  They were both successful in that the participants felt immediate benefit from our meeting together.  This is just an example of something I know, that I am skilled at facilitating meetings.

The reason I am writing this is to remind myself of my proficiency.  I appreciate that I continue to look at how I can improve my work, but I tend to minimize what I already do well. I hold myself to a higher, more critical standard than I expect of others.  In the next months left of this job, I will continue to take note of what I do well.  I can even let myself off of that old danged hook too.

Maybe my retiring will leave some holes.  Maybe there will be times when my colleagues will need to regroup, and do it differently next year because I am not there anymore. I hope they come up with new ideas and new ways that work even better.  I hope it’s what  I would do.


October 14, 2016

It happened on October 14th.  I knew it at the time, and was relieved.  I wasn’t sure it would last, but it has for two weeks.  What happened is I gave up my struggle, my angst about not being able to retire with my job all tidy.  What replaced that struggle was a peace with whatever was going to happen.

On that day I had another event staring at me, that was taking place on the 20th.  It’s an event with a labyrinth of details, involving a lot of people and taking nine weeks for the preparation.  On the afternoon of the 14th, I took care of the next set of details, and realized it would be okay.  I no longer needed or wanted to be experiencing stress.  I felt some peace, thus some ease.  The 20th came, the event happened.  Mistakes occurred, repairs made, and the outcome was delightful for our students.  At the luncheon wrapping up the event, my colleagues acknowledged my fifteen years of contributions.  This was my last time to do this, and it felt just right.  Not too happy, not too sad.  Just right.

I work in Special Education as a Transition Coordinator.  I attend a lot of annual IEP (Individual Education Program) meetings. In order to remember for the next year, I  right notes to myself about information I gave, and next steps for that student and family.  Yesterday I was writing notes from a challenging meeting.  I decided it would be nice for the next person to know what helped moderate the challenges.  I added a sticky note, which started with: “Dear new Transition Coordinator”.  Writing that gave me great delight,  and I plan to do more of that.  I have no idea how the new Transition Coordinator will react, and it doesn’t matter.  It makes me grin, and is helping me acknowledge it won’t be me next year.



230 Days

Today I had a jarring experience. I came home feeling sad about retiring.  This is not how I have been feeling typically.  I usually come home and look at my countdown app, assuring myself this working gig is indeed going to end!

There are two Transition Coordinators in the school district and I have one of those jobs. ( I just edited: and I am one of them.  I just realized that is what’s this is about.). The other Transition Coordinator and I met with our boss, to discuss the hiring process, and what we believe we bring to the job, to the profession.  I felt like I was talking about me in the past tense.  Many days it’s great to be leaving as I am so looking forward to being retired. Today I had the jolt of realizing I am leaving a fair amount of my definition of me.  So maybe this is part of the separation process:  from “I am one of the two Transition Coordinators in the district” to “I have a job as one of the two Transition Coordinators in the district.”  Hear the difference?

Just as I understand my co-workers will start detaching from me, perhaps I need to start detaching from “I am a Transition Coordinator”.  While continuing to do my job.  I am still relevant, no, what I do for/with students, families and staff is still relevant.  I am always relevant.  So, there it is.  I am scared of not being relevant.

I told my boss today  it is wonderful to be able to retire while I still like my job.  But I am realizing that liking my job means there are many aspects of it I will miss. I have been the Transition Coordinator for sixteen years.  In the last few years I have enjoyed feeling a greater level of competence and confidence in my work. This is pretty gratifying.  I have worked in the same building and with some of the same staff, for twenty years.  A couple of decades is a long time, and a lot of relationships are work-related only, that I do not anticipate moving into friendships.  Those relationships will be ending.  Which is fine, as I don’t want a huge amount of people to maintain friendships!  It just part of a huge life change that caught up with me today.