Monday, August 08, 2022

Fostering an adult child's independence - part 2

 Last April I wrote about our family's journey with moving our youngest son toward independence. As I stated then, "Our youngest son has autism spectrum disorder, has grappled with major depression and anxiety, and has been seriously suicidal multiple times."

Over time our son's world seemed to shrink until he found himself unable to do much at all. Both he and we wondered whether he could ever live any kind of independent life. It was a disheartening place to be for all involved.

For the past eight months, our son has been participating in an immersive program hundreds of miles from where we live that helps "young adult men work through levels where they develop and demonstrate the skills necessary for independence."

At the same time, my wife and I have undertaken a soul stretching journey of our own designed to help us become the kind of parents who can support our adult son's independence, despite his challenges. We have gone through a lot of hard work to redefine how we think about ourselves and how we view each of our children.

We have had to seriously confront our unhealthy codependent attitudes and behaviors. Confronting your own deep-seated deficiencies with the prospect of working to change them is challenging enough that many people choose an unhealthy status quo instead. Our growth hasn't always been much fun, but it has been highly valuable.

Even now, much of our development is fresh and tender. It is soooooo easy to slip back into old established scripts and roles. Sticking with our growth will require work, therapy, diligence, and vigilance. It takes discipline and work to establish and maintain healthy boundaries, but we are discovering that this is what makes it possible to bring wholeheartedness to our relationships.

In April I wrote, "We have learned that we must give up trying to manage our son's outcomes." We have had to give up on thinking that our son must choose to adopt our values or religious beliefs, must seek the kind of education we have, and must achieve the kind of careers and family life that we have found so fulfilling. It has been a relief to realize that we are not responsible for his happiness or even his survival. But this also means giving up on our ideas of what his life should look like.

Our son recently posted this before/after photo. He was in worse shape eight months ago than he appears in the January 2021 "before" shot. The difference between then and now is astonishing even to us. The program he is in includes a fitness component. But I assure you that not all of the young men in the program achieve our son's current level of fitness. This has been something he has chosen to do for himself.

A month ago, we joined about half of the program participants and four staff members as our son and his companions competed in a grueling 10K Spartan Race that included a climb of about 2,000 feet and twenty-five significant obstacles. Our son was tired as he approached the final obstacle stations, but he was in pretty darn fine shape. Instead of collapsing after the race like some participants, he seemed energized and ready to do other things.

Similar changes are reflected in many aspects of our son's lifestyle choices, including employment, emotional management, interpersonal skills, money management, etc. He has learned that he can use failures as learning and development tools. He seems confident that, regardless of what life throws at him, he can figure out a way to get up and move forward. It is difficult to explain how different this is from where he was at the outset of the program.

At this stage of the program, our son is making plans for independent living after graduation. That includes figuring out housing, employment, transportation, food, etc. We are prohibited from getting much involved. And for good reason. Our son needs to own this. He needs to own his successes and failures.

I am deeply impressed by our son's mental and emotional development. And yet, what I said in April still holds true. We don't know where this is headed or what his life over the next couple of years will look like. We must avoid trying to control his outcomes.

We are more at peace with what we can and should do, which is to be the kind of parents we should be. We too can learn from our failures and can use that learning as steppingstones to our own growth and development. We too will be graduating from the program. But like other graduations in life, this won't represent retirement from challenge, but the beginning of continuous challenge without the structure offered by the program.

Why would we want that? Why wouldn't we? We are older than we were eight months ago. But we are more alive than we were back then. Forward!

Sunday, April 24, 2022

Fostering an adult child's independence

I haven't written for half a year because life has been ... interesting. New job. New adventure with our son that has involved a lot of growth. Dealing with our daughter's unusual medical problems. Etc. Today I am writing about our son's journey. And our journey with respect to our son.

Shrinking world, shrinking hope

Our youngest son has autism spectrum disorder, has grappled with major depression and anxiety, and has been seriously suicidal multiple times. This has led to a variety of challenges over the years. We have tried very hard to make sure that our son has had access to good mental health treatment. And yet, it has been a real struggle for him, us, and the whole family.

Oddly, our son's social and employment capacities seemed to shrink from the time he got his first part-time job in high school until he spent much of last year holed up in his bedroom sleeping. Even his time gaming and doing stuff on the computer diminished.

As his world shrank, our son increasingly tried to control his home environment. We kowtowed to that for fear of him turning to self-harm. But months of walking on eggshells in our own home took a toll on other family members.

The problem with this was not lost on our son. He felt increasingly hopeless about ever becoming independent or living a decent life. He and my wife searched out various programs focused on helping with these kinds of issues, but they were all very expensive. We even initiated the enrollment process for a program designed to address failure to launch syndrome, but the cost prevented us from pursuing it further.

Coming to terms with the cost

After nearly a year of living through this situation, we visited our financial planner for our annual review. He suggested that we consider cashing out some of our carefully earned investments to cover the cost of a program for our son. We were surprised by this advice, but our planner contrasted this approach with what it might cost us to care for a nonfunctional adult son for the rest of our lives.

Our son was fully on board with this plan since he had researched the target program himself. The enrollment process required him to undertake significant steps, so it took a few weeks. The staff reviewed the application and accepted our son. (Some applicants are not accepted because they don't fit the program profile.)

The program

About five months ago, we drove our son many hours to the main office of the program, left him there, and drove back home.

This program differs from some others in that it includes a significant amount of unstructured time with a high degree of accountability. Many of the young adult men in our son's program have autism spectrum disorder, ADHD, OCD, depression, anxiety, executive function disorder, and/or other challenges.

In this program, young adult men work through levels where they develop and demonstrate the skills necessary for independence. Over time they engage in a variety of program activities, participate in personal and group therapy sessions, find and work jobs, gain transportation independence, save money in a launch fund for independent living after graduation, and develop a viable plan for living independently.

The young men live in townhouses that each host five participants. A professionally trained life coach is assigned to each house. Each participant works with a licensed therapist. As the typical kinds of problems with living in this kind of arrangement arise, participants learn how to deal with the issues and learn healthy accountability.

Most who enroll in the program reach graduation in 6-9 months. It might take some longer because the pace of preparation for independence differs by individual. Some leave the program without graduating. They are adults and can legally make their own choices on the matter. Some participants move to other programs that are more suited to their specific needs (including substance abuse issues).

Family involvement

Parents of participants also work with a therapist to advance through levels designed to help them learn healthy ways to support their adult children. They also engage in family therapy sessions and weekly parent group sessions.

Program staff make it clear that they cannot "fix" your child. They can provide tools to help participants and their families develop healthier personal and family dynamics. How the participants and families use those tools is up to them. The support system is designed to help participants and families wean themselves from the program, which can seem confusing or disorienting from time to time.

The growth experience over these past months for our son and for ourselves has been painful, soul stretching, and healthy. As parents, we have:

  • Read a pile of books (see list after this post).
  • Learned about our enabling and codependent tendencies.
  • Written letters of accountability and hope.
  • Worked on implementing healthier patterns.
  • Developed a whole new way of being toward our son and toward each of our children.

Telling stories

Humans function on the stories we tell ourselves. One of the main goals for parents involved in this program is for them to be able to tell their son's story in a way that is meaningful to their son, and to be able to tell their own story in a way that is meaningful to themselves. Participants have a similar goal.

That may sound easy, but it requires a whole lot of listening and giving up on scripts and roles that have defined relationships for years. It can feel like ripping away parts of your own identity, so it can be painful. The truths found under those layers feel raw at first but exposing them allows for a level of authenticity that has been hidden even from ourselves.

Some of our story

Our first serious encounter with our son's challenges occurred when he expressed suicidal thoughts at age 10. His first therapist told us that we had to back off our expectations. We took this (probably far too) seriously. We grew to where we unwittingly tried to protect our son from any and all challenges.

The message we derived from much of the suicide prevention material was that we would be at fault if our child completed or even attempted suicide. The guilt this promotes is harsh. As our lives became a constant suicide watch, we spent years parenting from a place of fear masquerading as love.

Our parenting styles strongly sent "you are not OK" and "you can't do this without us" messages to our son. It nourished "we must fix our son" and "we must fix situations for our son" attitudes in ourselves. Frankly, that can offer a heady feeling of importance and even identity for a parent. It also allows a parent to seek validation by whining about their son, his challenges, and how this affects them.

This was a toxic mix that wasn't good for our child or for us. It also fed unhealthy relationships with our other children, and between our son and his siblings. We did not realize that we were seeing our son as an extension of ourselves rather than as a separate individual with unique capacities, hopes, dreams, and accountability.

Changing for the better

Stepping away from these kinds of codependent patterns has been difficult. For years we have been telling ourselves stories suggesting that these patterns demonstrate that we are good parents and individuals. These stories have been deeply imprinted, so it is easy to get sucked back into the old patterns.

At the same time, our son has gone through his own soul stretching. He has been learning to see himself as a separate individual who is part of our family group rather than as simply an extension of our family. This is a fundamental identity shift, so it has been painful.

One of the more challenging aspects for us has been establishing and maintaining healthy boundaries. We have frankly been poor at that. After our son entered the program, we had to put up a solid boundary saying that he would not be permitted to move back home for any reason.

While that is a liberating stance in one way, it led to one of the most challenging experiences of my life. About a month into the program, our son was seriously struggling. He couldn't see himself succeeding in the program. His fundamental identity was being challenged. The fact that he had been sick with a cold and was short on funds didn't help his mental condition.

The program ensures that participants have enough to eat even when they are out of cash. The food provided in these cases is utilitarian but adequate, so our son wasn't going to starve. But he was determined to leave the program. He said he was leaving even if he had to choose homelessness.

We reiterated our boundary that we would pay for our son to move to a different program, or we would send him camping gear if he desired it, but he could not move back to our home. He stomped out of his therapist's office and walked away. The staff kept tabs on him until he eventually wandered back to his townhouse several miles away. He was crushed that we would not let him come home.

Holding that line was one of the most difficult things I have ever done in my life. And frankly, I wasn't sure at the time whether it was the right thing to do. It is difficult to describe the level of guilt I felt for weeks. Some of that pain remains even now.

But we have discovered that guilt is neither a good source of motivation nor a good framework for determining what is right. Healthy parenting may require a parent to learn to sit with parental guilt for some time. Doing what is right doesn't always feel good.

A glimmer of hope

The first few months in the program were rocky for our son. Almost every interaction with him involved him appealing to us for rescue on some level. After all, we had been rescuing him for years. But little by little, he has begun to find his way.

Recently we had a very good adult-to-adult conversation with our son with no hint of a rescue request whatsoever. He is feeling competent. He is owning his own path. Although he was originally opposed to working in food service, he is a line cook at a restaurant for now. He envisions better things in the future. He is putting money into his launch fund and has an initial (realistic) plan of how he will live independently after graduation.

That plan will have to become more concrete and fully funded over the next few months. Our son is much fitter than he was during his basement-dwelling couch potato life. He recently hit his highest squat press weight, which is amazing for a guy who used to only wishfully think about exercise.

Our path and our son's path

But to be honest, we don't know where this is headed. We have learned that we must give up trying to manage our son's outcomes. We are working to accomplish the parent requirements in the program. We can do the work that brings our own inner peace. We can model healthy parenting.

We can do many things better than we used to. But we can't dictate where our son is headed. That's his journey and his life. We must allow him to go where he chooses and allow him the consequences of those choices. We can connect with him, learn his story, and honor his pain. But we must not rescue him from it.

This is the way to parental peace, even if it sounds painful. Truth be told, you can experience pain and peace at the same time. You can empathetically hurt for your child while incorporating that pain in healthy ways. Easy? No. Right? Yes.

One parent with a struggling child asked why they should go to all the work of good parenting if it can't guarantee healthy outcomes in their child. Their therapist responded that good parenting is its own reward. You choose healthy parenting practices because it is the right thing to do, regardless of what your child chooses. Doing the right thing brings internal peace, even when external things work out less than optimally.

This is the journey we are on. For now, it consumes a lot of resources and takes a lot of our energy. But we have greater inner peace. And it is the right thing for us to do.


Some of the books we have read on our journey:

Friday, October 29, 2021

A job change engineered by God

"Answer that call." The impression was clear and surprising. As a software engineer, I have been used to being contacted by recruiters throughout my career. Software engineering has long been a hotspot in the job market.

Beginning last spring, I noticed a significant uptick in recruiters reaching out to me by phone, email, and LinkedIn. Turning down recruiters seemed like swatting away flies. My LinkedIn profile doesn't even show that I'm interested in looking for a different job.

Besides, I had a good job as a senior engineer at a growing logistics management firm. I was an influential member of a great team of professionals, some of whom were good friends. My work was highly valued. I had a lot of deep tribal knowledge. The pay was good and the benefits were decent. I was earning plenty of vacation time annually. I worked from my home office full time. I honestly told people that this was the best gig of my entire career. Why would I give that all up for something unsure?

Growing pains often accompany growing organizations, and so it was in this case. Over a period of less than a year, nearly the entire executive team had been replaced with executives hired from larger firms. Each came onboard wanting to quickly make their mark. The result was chaotic for my position, as various executives ordered immediate competing priority changes seemingly willy-nilly. But this alone would not have caused me to consider changing jobs. Growing pains tend ease over time.

Frankly, I had been sensing a need to consider a different challenge career-wise. I am getting along in my career. Too often I have seen seasoned workers slowly slide toward becoming living inventory as they rely on past accomplishments and look so longingly at retirement that they lose the drive to learn and do new things. Although I found challenge and reward in my work, I had been feeling a subtle itch to reach for the kind of challenge that can usually only be found through a job shift.

In recent years, recruiters have opted for email and LinkedIn messaging over phone calls. I usually screen recruiter phone calls and let them go to voicemail. When the phone rang showing an unrecognized number, I pressed the call screen button and watched to see if the caller would say anything. As the recruiter started talking, I sensed the unmistakable prompting to answer the call. I almost surprised myself by pressing the green answer button.

As I chatted amicably with the recruiter, I heard several things that normally would have caused me to conclude the call quickly, but I felt a deep inner calm signaling me to continue learning about the position being discussed. I also heard one thing that really made me pay attention: FamilySearch.

Like many family history enthusiasts, I have been an avid user of FamilySearch products for many years. An opportunity to work on software systems for products that I deeply believe in? I was all ears.

Later I would learn that the recruiter came upon my information in a very unusual manner. He also felt that he should call rather than reaching out via electronic message. That first discussion led to a series of interviews, all of which felt very natural and comfortable.

The entire process from first contact to confirming a job offer went so smoothly and quickly that it seemed uncanny to me. I have been around the block a few times and I know how these things usually go. The recruiter later confirmed that nothing ever works that smoothly in his line of work. Well, nothing except this job.

The whole time, I have felt very strongly that I have been guided to this position, almost as if all my past training and experience have been preparing me for this exact situation. I continue to feel that way now. Each time a new coworker has told me that I was divinely brought to this job, it has simply echoed something I have already known to be true.

The hardest part has been leaving my old job and coworkers behind. And yet, as I prayed about that, I felt strongly that this would actually work out best for that organization too. Frankly, it is humbling to be told by God that your workplace will be better off without you there. But it all felt good and right. A good friend at work was so distraught about my announced departure that he prayed about it and received a witness that it was the right thing for both me and the organization.

Jumping jobs at this point in life is not without its challenges. I am back to starting over on earning vacation and starting new insurance right when we had covered our deductibles for the year. Our home budget system has been thrown into a bit of disarray. Unlike working for a place where the home office was inaccessible on the other side of the country, I now live an hour and a half from the office, which is within range. Although I work from home full time, I find that I am commuting to the office once every two or three weeks.

I don't know what the future will bring. This is still the right thing for me to be doing right now. While my skill set meshes well with my new job and I am highly aware of FamilySearch products and offerings, I am still learning many new things. I am having to stretch. It isn't always comfortable, but it feels good and right.

Monday, August 23, 2021

We testify of Christ

Years ago when we had only three children, I was unable to attend church one Sunday, so my wife took the three children to church by herself. It happened to be our monthly fast Sunday. (See Fast Sunday topic for explanation.)

In Latter-day Saint congregations, the fast Sunday sacrament meeting program consists of congregation members voluntarily expressing extemporaneous testimony. This format is not without its challenges. It's like open mic Sunday. Congregation leaders have little control over who decides to speak, how long they speak, or what they say.

Most active Latter-day Saints can likely cite a few quirky, strange, awkward, or inappropriate testimony speeches. But most church members sense that a certain spirit of sacredness should pervade the meeting, so there are probably fewer of these unfortunate events than one might expect.

Back to that Sunday years ago. When the baby needed to be fed, my wife retreated to the mother's lounge for some privacy. Our six- and four-year-old boys seemed to be managing just fine with coloring books and they promised they would be good.

As my wife listened to the testimonies being voiced over the speaker in the mother's lounge, she was surprised to hear the familiar voice of our oldest son. That day our normally introverted son spoke about many things in a manner that I am told was quite entertaining. Unfortunately, few of these things had anything to do with the gospel of Jesus Christ.

My wife couldn't stop feeding the baby and run to the chapel. She thought that surely our son would quickly button up his verbal stream of consciousness because he had never been much for public speaking.

That was not the case this time around. My wife sat increasingly mortified as the minutes passed. Our son talked about the tack strips that were exposed in the dining area after the old carpet was removed and before the new carpet was installed, among many other topics of that nature. Surely a member of the bishopric would put a stop to our son's rambling. Or maybe another mom would kindly step in. But nobody did.

Our son finally ran out of things to say after seven long minutes. In the weeks following this event, numerous congregation members told me how entertained they were by our son's extemporaneous speech. But entertainment is not the goal of testimony meeting.

Following this event, we decided that we would hold our own monthly family testimony meeting. During one weekly family home evening each month, a family member would conduct the meeting and invite family members to present their testimonies. The individual conducting would first repeat what has become a mantra in our family:

As a reminder, a testimony in the church is what you know or believe to be true about Heavenly Father, Jesus Christ, Their church, their workings in our lives or in the lives of others.

This may not be the best textbook definition of a testimony in the church, but it has worked for our family. The church's testimony topic page states, "A testimony is a spiritual witness given by the Holy Ghost." This is an indispensable element of a testimony that my family's mantra doesn't adequately address. The church's testimony topic page adds:

The foundation of a testimony is the knowledge that Heavenly Father lives and loves His children; that Jesus Christ lives, that He is the Son of God, and that He carried out the infinite Atonement; that Joseph Smith is the prophet of God who was called to restore the gospel; that The Church of Jesus Christ of Latter-day Saints is the Savior’s true Church on the earth; and that the Church is led by a living prophet today. With this foundation, a testimony grows to include all principles of the gospel.

A testimony in the church may include any element of the gospel, but it must be founded on the basic doctrines of the gospel. Without this foundation, testimonies of peripheral matters are like branches severed from the trunk of the tree, or from the "true vine" (John 15:1, 1 Nephi 15:15). Without a witness of Heavenly Father and Jesus Christ, and their true work among their children on earth, testimonies of incidental doctrines become secular pronouncements devoid of true spiritual power.

I recently attended a fast and testimony meeting at a Scout camp. The meeting was conducted by an authorized chaplain of The Church of Jesus Christ of Latter-day Saints in conjunction with the administration of the sacrament, so it was an official church meeting. I was deeply disappointed in some of the extemporaneous speeches that were presented. One individual testified of the importance of doing daily acts of personal maintenance. Another testified of the value of hard work. Others spoke of the value of friendship, service, the great program at the camp, standing for what is right, etc.

All of these are good things, but most speakers seemed to shy away from testifying of Jesus Christ and of the Father's great plan of happiness. Some didn't even bother to close their speeches in the name of the Savior, perhaps sensing within themselves the lack of connection between their words and the Divine Son of God.

Why do we close testimonies, talks, lessons, and prayers in the church in the name of Jesus Christ anyway? For starters, because the Lord has commanded it (Moses 5:8, 3 Nephi 27:5-7, D&C 1:20). But isn't it a bit presumptuous to claim to speak in the name of the Lord? After all, anyone who has been in the church for long enough has heard plenty of nonsense uttered before a speaker has closed in the Savior's name.

It is understandable that some might feel uncomfortable presuming to speak for Jesus Christ, yet the Lord himself says that his goal is "that every man might speak in the name of God the Lord, even the Savior of the world" (D&C 1:20). But isn't that at some future point when we are perfected?

CS Lewis wrote something that still bothers many Christians: "Every Christian is to become a little Christ. The whole purpose of becoming a Christian is simply nothing else." He likens our efforts to act like the Savior to a child play-acting a grown up role, something children do quite often. Researchers have found that this play-acting is a very important part of growing up to be a functional adult.

Lewis posits that when we pray or speak in the name of Jesus Christ, we are play-acting at being Christ. We know even while in the throes of doing so that we are not Christ and that we are very unlike him in many ways, just as the child playing an adult role knows that in many ways she is very unlike the role she is playing at the moment.

Many Christians are well and good with becoming more Christlike, but they draw the line at actually becoming like Christ. That is tantamount to blasphemy in their eyes, although John teaches that disciples will ultimately meet Christ and see that they have become like him (1 John 3:2-3). If the Christian's job is to become like Christ, it is unclear from the scriptures where or why that effort should be halted. Latter-day Saints should fully embrace the quest to receive the Savior so completely that he eventually makes us equal to him.

Members of The Church of Jesus Christ of Latter-day Saints have been repeatedly called upon by modern prophets to make Jesus Christ the center of every facet of their lives. We are supposed to be obsessive about following Christ. We should talk of, rejoice in, preach of, and even prophesy of Jesus Christ (2 Nephi 25:25-26). How sad it is that some members of Christ's church struggle to mention the Savior in a meeting devoted to bearing witness of him.

"I feel moved to participate in the testimony meeting," one might say, "but I do not at present feel particularly close to Jesus Christ. In fact, I'm not sure how much I believe in the church and its spiritual claims anymore." Is the answer for someone who feels this way to keep their mouth shut in testimony meeting?

Perhaps the experience of a friend of mine can be instructive. The first time Ron bore witness of Jesus Christ, his church, and his prophets, was at a sacrament meeting just prior to Ron leaving on a two-year mission for the church. As Ron testified that he believed these truths, he was suddenly filled with the Holy Spirit and he knew that the words he was saying were true. His fledgling witness came as he exercised a particle of faith (Alma 32:27). He has spent a lifetime cultivating his faith so that he now has a vibrant burning witness within his soul.

The primary purpose of a testimony meeting in the restored Church of Jesus Christ is to bear witness of the Savior. If you can say something that helps fulfill that purpose, go ahead and say it. It seems to me that the Lord is very compassionate toward those who make earnest efforts to follow him, no matter how clumsy they might seem.

If you can't currently even express belief in Christ, perhaps it would be best for you to first spend some time building your faith by play-acting like Christ in your thoughts and actions more often. CS Lewis promises that as you do this, the Savior will work with you to re-create you in his image, "killing off the old natural self in you and replacing it with the kind of self He has. At first, only for moments. Then for longer periods. Finally, if all goes well, turning you permanently into a different sort of thing; into a new little Christ, a being which, in its own small way, has the same kind of life as God; which shares in His power, joy, knowledge and eternity." (Mere Christianity, 1996 edition, p. 165)

We still laugh about the time our oldest son rambled at a testimony meeting as a young child. He was just doing what he perceived others doing according to his six-year-old understanding. Some of our adult children have pursued other paths than a fully active Latter-day Saint lifestyle. But if you ask any of them what a testimony in the church is, each one still knows the answer.

Wednesday, July 21, 2021

Fishing with Dad: the time I caught no fish all week and was glad

I was about nine or ten years old when Dad took a week of vacation one summer and took my three brothers and me up to Pineview Reservoir to go fishing for a few hours on a daily basis. (My youngest brother was yet to be born.) Mom wasn't able to take vacation from work that week, so this was a way for Dad to enjoy a staycation with his sons. As I recall, we had gone on a bigger ticket vacation the previous summer and my folks were saving for another major event down the road, so this was a way to vacation on a budget.

Fishing is not fun for me, but this daily excursion still turned out to be a memorable experience.

Each day we would arise much earlier than a kid wants to get up during the summer months, eat a quick breakfast, grab our gear, and head up to the reservoir. I was terrible at preparing my fishing line. I didn't know how to tie knots, couldn't bait a hook or attach a lure, didn't understand how the plastic bubble worked, etc.

The most likely reason I didn't understand these things was that I didn't care about them. I have a brother-in-law who is an avid fisherman. He fishes year round, multiple days each week. He knows all about fish behavior and how to entice the right kinds of fish under the right conditions using his hand-tied flies. But I simply can't bring myself to care about any of that stuff. The entire activity is mind-numbingly boring for me.

Back during our staycation, after the seemingly endless time it took to get my pole and line ready, I would plunk my hook into the water and hope that I would not catch a fish. Because if I caught a fish I would actually have to touch the thing. Yuck! Maybe five minutes into the interminable waiting for a fish to steal my bait, I would be goofing off doing something other than fishing.

It was during one of these many goof off sessions that I learned that other fishers didn't take kindly to some stupid kid awkwardly trying to skim rocks across the surface of the water where they were fishing. It turns out that chucking rocks in the water tends to scare the fish away. And unlike me, some of these people actually did want to catch fish. Go figure.

Dad loved his sons. But he was not very patient with kids who didn't quickly demonstrate proficiency in anything that came easily to him. We used to hate it when Mom would send us outside to help Dad with a task he was doing in the yard or on the outside of the house. Dad couldn't understand the necessity of baby steps and instructions for any process that seemed self-evident to him. Nor could he understand that mistakes were a natural part of teaching a kid how to do a task.

Actually, Dad didn't seem to grasp that teaching a kid was of any value whatsoever when there was a task to be finished. The task always took precedence. So Dad often ended up doing these things by himself. He excelled at thinking deeply and getting stuff done; not so much at teaching. Sometimes when my deeply philosophical dad would try to teach us, the content would cruise so far above our heads that our eyes would glaze over, seemingly for hours.

When my parents had young grandchildren, I saw Dad get down on the floor and horse around with them in a silly manner. It was only then that I remembered Dad doing the same thing with us when we were young. The childish goofiness each of us shared with Dad ceased about the time we started elementary school. Then Dad expected us to step up and act responsibly, as he had been required to do at that age, growing up in Nazi Germany.

Once we were no longer small, Dad exuded the persona of a northern German stoic. But there were times something more whimsical would break through his staid surface. One of my favorites was when Dad spilled his milk at the dinner table one evening. Kids spilling drinks at the table was one of Dad's pet peeves, because the liquid was bound to drip onto the new dining room carpet.

This carpet was avocado green colored deep shag that was all the rage in the early 70s. It looked horrid when it was in optimal condition, so it is hard to see how a little bit of milk would make it worse.

Still, when Dad spilled his milk, we all watched as the liquid quickly spread toward the leaf seam in the table. Dad cast about for anything close and ample enough to blot the spill before it reached the critical spot. The only thing he could see was my brother's fresh sandwich. He grabbed it and mopped up enough of the spill to save the day, giving Mom enough time to jump up and grab a towel, which she used to mop up the rest of the spill.

The interplay was beyond hilarious for us kids. Well, except for my brother, who was deeply offended that his sandwich had been used as a mop cloth. Mom quickly replaced it with a fresh sandwich. The irony of Dad enacting his own pet peeve was not lost on him. He couldn't help laughing out loud about it, which was something we rarely saw in those days.

Dad has been gone for 13 years now. His last couple of years of life were marked by declining physical and mental health. It was painful to watch my intelligent, learned, analytical, serious, hard-working, spiritual father deteriorate until his comatose, emaciated mortal form stopped sustaining life.

I am still left with a lifetime of memories of Dad; some good and some bad, but good overall. Among those memories is the summer we went fishing every day for a week. I'm still glad that I never caught any fish during those trips. I didn't like fishing then and I still don't like it. But I like the memory of that week with Dad and my brothers, as well as many other memories that evoke a mixture of feelings, weaving a rich tapestry of love that I know will endure beyond this mortal sphere.

Thursday, May 27, 2021

My favorite daughter graduates, thanks to some teachers, despite others

"There is no social distancing going on here," I said in my wife's ear as we entered the high school football stadium. Nearly every inch of bench space in the stands on both sides of the field was occupied by those who had come to witness their loved one endure the time honored robed ritual signifying their completion of high school graduation requirements.

The high school had permitted up to five guest tickets per graduate. They also webcast the proceedings for those who wished to view the ceremony remotely. The completely filled grandstands caused me to believe that the administration had overestimated how many people could reasonably be seated. Some wore face masks; most didn't. With the unsettled spring weather, I was grateful that we wore light jackets and gloves.

Well over an hour after the gowned and capped graduating seniors had filed onto the field and taken their seats, the talking from the stage was still ongoing, as if anyone would remember the next day what had been said. (Cue the Charlie Brown teacher voice.) It took a while perusing the sea of square headdresses to determine which one adorned our fair offspring. (Why do we wear such weird headgear to an event that is supposed to dignify the value of the pursuit of knowledge?)

Our daughter looked up at us from her seat and gave us the ASL sign for "tired." This was more than typical teen boredom. Late last year we discovered that our daughter has a somewhat rare blood clotting disorder that may be a contributing factor to the unusual fatigue she has experienced throughout her high school years. We are working with professionals to understand and address her health problems.

Eventually the program moved on to the orderly procession of each graduate filing up to the front and walking across to accept their diploma, each announced by a faculty member with a great speaking voice. Often as a name was called, spontaneous cheers erupted from small groups of people around the stadium. I was gratified that, as requested, revelers refrained from air horns and other noise makers. The process of moving all 645 graduates through that routine took about as long as the talking had.

I experienced an odd mixture of feelings as I watched my favorite daughter (also our only daughter) accept her diploma and move back to her chair on the football field. For my wife and me, this represented a new chapter. Our fifth and youngest child has completed compulsory education and we move on to the next phase of life, which arguably is much closer to the state of the loved ones whose graves we will visit this Memorial Day weekend than when we started this chapter. And that's OK. It's how life works.

Graduation means a new chapter for our daughter too. High school has in many ways been a tough slog for her. Besides the continual oppressive fatigue she has experienced, on/off remote learning during the pandemic took its toll socially and academically.

I take my hat off to teachers and administrators who have struggled to make all of this work during the pandemic. Many of our daughter's teachers have gone out of their way to help their students succeed in this extraordinary environment. Unfortunately, there have been a couple of teachers who have been determined to force our daughter to succeed in spite of them, even with a 504 plan. It's people like that who cause students to hate school.

Educators like this are typically not bad people. They are often academics who simply do not understand those who are not academically inclined or who face less obvious challenges. From this perspective, nearly all academic deficiencies can look primarily like motivation issues.

We frequently encountered this same phenomenon with educators who treated our autistic son's limitations as something that could be overcome with more focus and harder work. After all, our son was bright, articulate, and polite. He was never a problem in class. Why shouldn't he simply be able to keep up with the normal workload? Many educators who don't understand those who inconveniently find the traditional schooling model an ill fit for their needs impose lifelong traumas on these students, often with the best of intentions.

We are very grateful for the teachers in our high school's theater department. Theater has been a bright spot throughout our daughter's high school years, even when it has required hard work. Although our daughter loves singing, and even even spearheaded a monumental effort to help hundreds honor her retiring choir teacher last year (see 5/18/2020 post), she found her new choir teacher's approach so chafing that she ended up dropping choir partway through her senior year. That was sad.

Yes, the high school years have in many ways been tough for our daughter. So, seeing that diploma handed to her brought a strong sense of relief and gratitude. It's over.

Now, onward!

Thursday, April 22, 2021

Could you be a hero that saves lives?

Years ago when I was a member of a young single adult (YSA) congregation of my church, a young man who I will call Mike (not his real name) joined our congregation. Since congregations of The Church of Jesus Christ of Latter-day Saints are mostly geographically delineated, it was common for members of our congregation to know each other through school or community associations. Mike was several years younger than me, so I had not attended school with him and didn't really know him.

Nor did I make much of an effort to get to know Mike. Although he had a job and owned a muscle car, Mike had several noticeable disabilities, including some mild cognitive, mobility, and speech challenges. Although Mike made efforts to attend church meetings, he was painfully socially awkward. Few of us made serious efforts to engage Mike. Most seemed to avoid interacting with him. And if I am to be honest, many, including myself, saw themselves as superior to Mike.

Those who knew Mike better were aware that he grappled with mental illness. There was less understanding and acceptance of mental illness back then. It was mostly just seen as scary, so people with mental illness were also considered scary.

Those in leadership positions knew it was socially difficult for Mike to attend church meetings. They assigned people to watch for Mike and invite him to sit with them. Some made outreach efforts outside of church meetings. But none of these well-intentioned approaches evolved into real friendships. Even socially backward people can usually sense when someone truly cares for them as opposed to when they are just another chore to be completed.

One day Mike drove his muscle car to a canyon a few miles away. In that lonely canyon, Mike ended his mortal life.

Looking back on this, I am ashamed to admit that, mixed with my confusion and sorrow about Mike's death was a sense of relief that I would no longer need to awkwardly interact with him. Like many of that era, I was very judgmental about those who attempted or completed suicide, seeing it as a very selfish act.

Another member of our YSA congregation had moved from out of state. Allen (not his real name) was older than most of us but was still unmarried. He was a good-looking, outgoing guy who worked as a first responder. I was more familiar with Allen's brother, who was closer to my age and had lived in our area longer than his brother.

Frankly, I was a little envious of Allen. He seemed to have a magnetism that I lacked. He had a career as a hero, saving lives. He turned some of the young ladies' heads in ways I knew I never could. Allen seemed to have everything going for him. But I was unaware of the inner demons of depression and anxiety that he had grappled with for his whole life. I was unaware that, before moving to our area, Allen had been seriously suicidal multiple times.

Then one night when he was once again suicidal, Allen went to a secluded spot and completed his final suicide attempt.

I felt terrible for Allen's family, especially his brother, who was my friend. But once again, I was very judgmental toward Allen. How could he do something so selfish and so obviously wrong?

Fast forward a couple of decades, and I found myself stunned when my 11-year-old son confided that he was experiencing suicidal ideation. The past decade has taken us on a journey that has resulted in three crisis hospitalizations. While I can't pretend to completely understand suicide, I know a lot more about it than I did when I was more ignorant and judgmental.

Research shows that the vast majority of those who attempt suicide don't really want to die. Many are experiencing some type of horrific psychological pain that most of us can't even imagine. Due to their mental state, they feel like they have run out of options. In those moments, they have no hope of life ever getting better. They become convinced that everyone around them would be better off without them here.

"I didn't want to die," said suicide attempt survivor Cortez Yanez. "I actually wanted to live, but not with the same pain I was going through. That made suicide an option for me." Kevin Hines, who miraculously survived a leap off the Golden Gate Bridge, says much the same thing in this riveting video:

Today I can look back and see that both Mike and Allen came to our YSA congregation with mental health challenges. Mike never felt like he fit in and saw no hope of ever finding a place to belong and be accepted for who he was. Allen struggled with anxiety and depression while looking great on the outside.

I don't know if anything any of us in the congregation could have done might have prevented the death of either Mike or Allen. But I do know some things that each of us can and should do to help those we encounter in our lives who might be struggling with suicidal ideation. Good resources for learning what to do can be found at the Church's suicide site and the Suicide Prevention HelpGuide. You can also call the National Suicide Prevention Lifeline at 800-273-8255 anytime of the day or night.

Perhaps the most important thing the average person can do is to be aware of the warning signs of someone experiencing suicidal thoughts. Talking about wanting to die or about killing oneself, or looking for ways to kill oneself should be obvious markers. Other signs might include talking about being trapped, hopeless, or a burden to others; increased substance abuse or other self-destructive practices; exhibiting higher levels of anxiety, sleeping too much, withdrawal/isolation, rage, revenge seeking, extreme mood swings, or giving away important personal items.

Experts agree that the best way to help someone who you suspect might be considering suicide is to ask them forthrightly about it, listen in a caring manner, and help them get the aid they need. Many incorrectly assume that talking about suicide might encourage rather than prevent their death. This has repeatedly been shown to be wrong. Talking about (not advocating for) suicide saves lives.

Those who are considering suicide are often caught in cyclical thinking from which it is difficult to escape without outside help. Your asking whether a person is thinking about self harm or has a plan to harm themselves can provide the ramp they need to get out of their thinking rut and prevent tragedy.

An equally important matter is how to help someone once the immediate crisis is past. We have found through our family's experience that once the person who was suicidal is released from the hospital, they are essentially dumped unceremoniously into a mental healthcare wasteland that has far too few providers who accept new clients, many of whom are inaccessible due to insurance quirks. The message too often seems to be, "We kept you from killing yourself. Good luck staying alive. Bye." This probably requires more systemic change than one person can provide, but helping someone connect with a qualified mental health clinician can be immensely helpful.

The main thing is to really care. That means reaching out to and spending valuable time with people that might not be easy for you to be around. Surrendering ideas of superiority can only help these kinds of relationships. You may not face the kinds of challenges others do, but that does not make you better than them.

Each soul, no matter how troubled, is a beloved child of God. We have the opportunity to reflect his love to others. Some of the most valuable targets for your compassionate outreach might be found among those who seem the least lovable at the moment.

I can't say for sure whether following these ideas might have helped Mike and Allen make better choices that could have preserved their lives. But doing these things certainly couldn't have hurt. And regardless of the outcome of any specific case, it is the right thing to do.

We have come a long way with respect to mental health attitudes and treatments since Mike and Allen left this world. But many things haven't changed. My own son longs to be active in his YSA congregation, but he still struggles to fit and feel accepted, much like Mike did years ago. Few members of my son's congregation likely have any clue how challenging and draining it is for him to attend any of his church meetings, or how much of a difference a little compassion on their part makes for him.

Having compassion for, reaching out to, and seeking to include those who seem awkward isn't easy. It can be, well, awkward. But again, it's the right thing to do. A little effort can have a large impact.

Souls like Allen can be harder to detect. They already seem to fit socially. A lot of their pain is hidden in public. Since we can't always detect the pain people are experiencing, compassion toward each soul we encounter is the best way forward. Granting space for others to be their authentic selves in our presence can go a long way. Demonstrating that they are worthy of your care and attention can help. You may not be a first responder hero like Allen was, but perhaps you too can save lives through something as simple as kindness.

Monday, January 04, 2021

The Puppy Holidays

 "No. No! NO!" I screamed inside my mind while making a vain attempt to keep the incredulity off my face. "We are not getting another dog," I said flatly. We were looking forward to being pet free within the next few years.

A relative had acquired an adorable Sheprador puppy (German Shepherd / Labrador mix) on Thanksgiving from an owner near our home. Being close by, they dropped in with their new puppy for a visit. We were very surprised that our 9-year-old Imo-Inu (Shiba Inu / American Eskimo mix) interacted with the puppy with curiosity rather than animosity. He has a long history of being good with humans but not so good with other dogs.

Later that evening our son who is on the autism spectrum proposed getting one of the remaining puppies from the same large litter. The puppies were only a month old but the mother had stopped giving milk. Caring for multiple puppies that still need milk is challenging, so the owner was looking to sell the puppies at a bargain price.

The whole idea seemed preposterous to me. But I could tell that my objections were inadequate in dissuading our son. The following day we convened a family council, since the addition of a puppy would significantly impact everyone in the home. Many valid concerns were raised, including:

  • Cost.
  • Noise.
  • High care needs.
  • Long-term needs.
  • Wear and tear on the home.
  • Impact on individual and family routines.
  • Impact on our existing dog and interactions between dogs.
  • Etc.
Unfortunately, our son interpreted these concerns as the family ganging up on him. He guaranteed that he would meet all of the puppy's needs, walk both dogs, minimize impact on other family members, and otherwise deal with related issues, or else find a new home for the pup. But I knew he was committing to more than he was capable of actually doing.

After our son left the meeting with the matter unresolved, I realized that he would probably end up bringing a puppy home. Our daughter came to me expressing concerns that everyone in the family would be angry with her brother if he did bring a puppy home. I explained that people would be unhappy, but that it's hard for anyone to remain angry for long when a puppy is involved.

As I prayed about the matter, I told the Lord all of the burdens that would result from adding a puppy to our household. The message I sensed from the Spirit went something like, "Yeah, I know what it's like to have children make choices that increase burdens. It's kind of what I do all the time. You see, there was this night in Gethsemane and this cross on Golgotha. Then there are the constant problems and prayers. ... Let your son do as he wishes and then deal with the fallout. It will be good for him."

So the following day after getting paid, our son brought home an adorable puppy that weighed about 6½ lbs. whom he dubbed Charlie. While everyone loved cuddling with Charlie, the weeks of puppy urine and nighttime forays into the yard soon brought us to reality.

The moniker Charlie gave rise to a variety of nicknames, such as Prince Charles, Chuck, Chucky, Chuckles, Chuckles the Pup, and Lieutenant Chucklebucket.

The puppy still needed milk for the first couple of weeks. We ended up feeding him unpasteurized goat milk from Sweet Deseret Farm. But he soon craved solid food. We followed the directions of an expert to soak puppy kibble in goat milk, but Charlie soon made it clear that he disliked soggy kibble. He liked crunchy kibble and he would also go crazy for real meat.

Interactions with our senior dog, whom I dubbed the Commodore or King Nui, were relatively safe but less than sanguine. The Lieutenant constantly wanted to engage in playful interaction with the Commodore. The corpulent old man, who suffers with arthritis and currently spends most of his days sleeping, was generally unwelcoming of the Lieutenant's exuberant overtures. Low growls and occasional sharp barks became common.

Prince Charles also wanted to do whatever King Nui was doing. He wanted to play with King Nui's toys, eat King Nui's food, sleep in King Nui's usual haunts, and go outside whenever King Nui went outside—much to the chagrin of the old codger, who tolerated the pup but generally responded with a "Hey you rotten kid, get off my lawn!" attitude.

Mind you, the Commodore has been our only pet these many years, so he has ruled the roost. The introduction of the Lieutenant into the Commodore's space really shook things up for the old man. He was more than a little jealous. He took opportunities to demonstrate dominance, brusquely telling the pup to keep his distance and often taking toys away from the little tyke.

Our son tried to keep his puppy promises, but he soon discovered that the critter's needs frequently exceeded his capacity to deliver. The puppy slept in a crate in our son's room, so he was the one to tend to the puppy's needs at night. There was no sleeping in for our son either. He had to get up when the puppy got up.

It turns out that Shepradors are very active animals. They are also social and crave lots of family interaction. One expert suggested that Shepradors typically need two hours of high activity and close interaction daily or they become bored and destructive. They also need plenty of room.

Charlie was smart. Shepradors are also pleasers, so he quickly learned his name and he learned several commands such as sit, up, wait, and come. He did OK with go potty. We later worked on off and down. But the puppy was taking a toll on the whole family. Everyone groused about having to puppy-sit, having to take the puppy outside in all kinds of weather, and constantly guarding person and property from playful teeth and claws.

Finally about a month into the puppy project, our son came to me and admitted that he could not keep his promises concerning his dog. He was feeling defeated when he admitted that he was ready to find a new home for Charlie. I told him that this was perhaps the most mature decision he had ever made. He should see it as a victory rather than a defeat.

Concerned that selling a puppy a couple of days before Christmas might be more likely to lead to an impulse purchase by someone who isn't really ready to care for a dog, we waited until after Christmas to list Charlie for sale. We found a willing buyer right away who had grown up in a family that bred and raised a certain dog breed. We were relieved that the new owner was well versed in puppy and dog care.

Due to circumstances, Lieutenant Chucklebucket boarded with us for another week before going home with his new owner. During that week we started calling him by the name selected by the new owner. Throughout the week, our son gradually distanced himself from puppy care duties as he grieved for his dog's departure. When I later asked him what he had learned from the experience, he let me know that it was too soon for him to go there. He needs time to process emotions first.

Roughly 48 puppy free hours have passed in our home since the Lieutenant's departure. The first afternoon and evening, the Commodore collapsed and spent 4-5 hours lying in one spot. He has since reclaimed many of his former haunts that the Lieutenant had commandeered. The old man seems much more relaxed.

So do our other family members, for that matter. It's almost like climbing off an exuberant theme park ride and then standing on firm ground in a quiet corner of the park. Part of me keeps expecting the Lieutenant to scramble around the corner and attack my shoelaces. Still, our oldest son echoes what other family members feel when he confides that he misses the puppy, despite the fact that his ear is still bleeding from a puppy scratch.

We sold the puppy's crate, toys, bowls, playpen, food, and other supplies with him. We still have some temporary fencing to sell that I used to protect outdoor HVAC equipment. So the story isn't quite complete yet.

While the Commodore was generally uncomfortable during the five weeks of puppymageddon that spanned Thanksgiving through New Years, he does seem to have learned some canine socialization skills that he has lacked until now. King Nui has been regularly prompting me to walk him to the nearby dog park, where he actually chooses to enter and greet other dogs with surprising calmness. He doesn't do much with them other than to simply greet them. And he soon lets me know it's time to leave. But this behavior is so different than it used to be BPE (Before Puppy Era) when the Commodore hated the dog park and didn't know how to behave around other dogs.

Personally I am very relieved that Lieutenant Chucklebucket has gone to a new home. Pretty much every concern that was raised in our family council weeks ago played out precisely as I had anticipated. But I wouldn't say that the burdens we bore during these weeks have any significant comparison to the Savior's atonement, notwithstanding the Spirit's whispering on the matter.

Our son has discovered that, while the desire to nurture another being was good, he wasn't in a position to do it very well and it distracted from other goals that he realized were more important at present. He is nursing some natural emotional pain as he moves on. Perhaps his development is the most valuable outcome from the holiday weeks of the puppy.

Wednesday, November 25, 2020

Giving thanks, seeing, and serving

I always enjoyed nostalgia and tradition as a kid. One Thanksgiving morning when I was about 10, the local LDS Institute of Religion presented a nostalgic musical devotional program at a nearby church. Our family got dressed in church clothes and attended the event, probably because Dad was in a church leadership position and leaders were encouraged to support the event.

That pressure must have diminished by the following year. But by then I had a nostalgic spot in my heart from the year before that said this was now a family tradition. When I excitedly suggested that we go to the program that year, my family (even my parents) responded with little enthusiasm. I think I guilted them into it, because we went. But that was the end of that Thanksgiving tradition. Most family members preferred to ease into the day while Mom preferred to work in the kitchen preparing a feast fit for royalty.

As I have participated in the #GiveThanks social media initiative over this past week, as requested by President Russell M. Nelson, I have found myself hoping that, unlike the Thanksgiving devotional of years ago, this gratitude activity becomes an annual social media tradition that sticks around for years to come.

For months leading up to last Friday, my social media feeds have been filled with anger, divisiveness, fear, politics, misinformation, nastiness, etc. That suddenly all turned around after President Nelson's message was released. For the past week my feeds have been filled with expressions of gratitude and content that is virtuous, lovely, of good report, praiseworthy (Article of Faith 13), and generally uplifting.

The change has been almost magical. I have found myself scrolling along with a big goofy grin on my face and occasional tears in my eyes. (See this Meridian Magazine article for examples of both.) It isn't lost on me that I have been blessed throughout my life in outsized ways and that there are many people who are struggling in ways that make it extremely difficult for them to express thanks at this season. Some might find looking at others' expressions of gratitude very painful as they compare their own situations.

President Nelson is correct when he talks about the healing power of gratitude. It is scientifically proven to help, regardless of the situation in which we find ourselves. It won't heal all of our problems, but it will make life better.

Saying that to people who are desperate straits, however, can be like telling someone grappling with clinical depression to just be happier. Disciples of Christ have covenanted to "mourn with those that mourn" and to "comfort those that stand in need of comfort" (Mosiah 18:9). As we express gratitude, it might be good to look for ways to mourn with and comfort those who are struggling right now, especially those on the margins of society.

A few weeks ago, we binge watched season 1 of The Chosen. We had seen all of the episodes before but this time I noticed a number of things that had previously escaped my attention. In one scene, Nicodemus is admiring a relative's love for the story of Hagar, wife of Abraham. Hagar find herself caught up in something complex over which she has no control. Fleeing from abuse, an angel of the Lord comes to her and in essence says in the name of the Lord, "I see you. I see what you are going through. You will be blessed" (see Genesis 16).

Later in the series, after Simon Peter and his brother Andrew have quit fishing to travel around the countryside with Jesus, the Savior visits the home of Simon Peter. In a private moment, Jesus turns to the wife of Simon Peter and says, "I see you." He explains that he sees what she is experiencing and he knows it isn't easy for her to deal with her husband's sudden change of profession.

We may not be able to perform healing miracles as Jesus does in this instance in the series, but we can do something. Sometimes just listening or being there for someone can help. Still, we can't do anything until we see those who are struggling.

Years ago I was hospitalized for a week and a half while suffering my first major Multiple Sclerosis attack. A week and a half may not seem very long, but I assure you that it seemed like forever. We had no idea where this would lead or what life would be like for us. Those who saw my plight and reached out in any fashion were a lifeline through those difficult days.

More than three decades later, I still get choked up as I think about those who visited, those who sent cards, those who helped with yardwork while I was laid up, those who donated leave at work so that I could continue to have a paycheck during the many weeks I couldn't work, and those who simply prayed for us. These acts helped me feel valued, helped me hang on, and helped me find ways to keep plodding ahead when I wasn't sure there was light at the end of the tunnel.

So while I have endless reasons to #GiveThanks this Thanksgiving, I hope that I will put that gratitude into action to see and serve someone who is struggling. There are ample opportunities all around us.

Monday, October 05, 2020

Adventures in cerebrospinal fluid leakage: part 6 (conclusion?)

Part 6 in a series about my wife's spontaneous cerebrospinal fluid leak condition. See part 1part 2part 3part 4part 5.

TL;DR  My wife's central nervous system (CNS) spontaneously sprang a leak two years ago. Nobody knows why. Too little pressure in the CNS causes a raft of persistent problems, including nasty head pain that never goes away, hearing problems, mental fog, etc. We have been on the hunt for successful treatment since then, with some successes and a lot of failures. But now we may be at the end of the story.  

The end of August found us at Cedars-Sinai Hospital in Los Angeles for the fifth time in 13 months for yet another attempt to resolve the cerebrospinal fluid leak (CSF leak) my wife had been experiencing for two years. We saw success after a leak was identified and surgically repaired last October (see part 3), only to have additional CSF leak symptoms develop a few weeks later.

We returned to Cedars-Sinai in February (see part 4). The CSF Leak Expert Team searched for the leak via digital subtraction myelogram (DSM) without success. They hoped that this meant that the leak was small enough that it could be resolved with an epidural blood patch. When that didn't work, we returned in June for another epidural patch, but using fibrin glue instead of my wife's own blood (see part 5). When no improvement resulted, the team scheduled another surgery.

When we returned in August, the team did three DSMs in an unsuccessful hunt for the leak. Each DSM is a surgical procedure that occurs under general anesthesia in an operating room. Only a portion of one side of the spine can be inspected during a single DSM. That's why they did so many DSMs.


Dr. Schievink felt certain that the leak existed, despite being unable to find it with the best technology available. He explained that venous fistulas like the one he repaired last October are very small, more like the size of a capillary than a vein. So it is possible for imaging to miss them.

My wife's spine is riddled with perineural cysts. The presence of these cysts is not a problem by itself. Many people have spinal cysts without ever experiencing any kind of problem. But it seems that venous fistulas are more likely to attach to a cyst than to any other part of the dura mater because the membrane is thinner where cysts bulge out.

The good doctor offered the option of having him place aneurysm clips on the two cysts that he thought were probably the most problematic, based on his experience as the world's leading expert in this condition and having performed thousands of these surgeries. He couldn't guarantee that this would solve the leak. But he suggested a 70-75% chance of success.

My wife said that there was no way she was going to just turn around and go home without making some attempt to fix the problem. Going home would certainly leave her with CSF leak problems, while she only might continue to have problems if she had the surgery. So we went ahead with the surgery.

The surgery occurred late in the day because it was done on the same day as her third DSM. Unlike our first three visits to Cedars-Sinai, the hospital had many COVID-19 restrictions this time around. Only one visitor was allowed and only at certain times for limited periods. But with my wife being one of the final surgery patients of the day, I was able to spend quite a bit of time with her in post-op.

It was late night by the time my wife was settled into her in-patient hospital room. It was directly next door to the room where she had stayed last October. By luck of the draw, she ended up with the nicest, largest hospital room I have ever seen. It had its own breakfast nook. We were told that the room had been occupied by many celebrities. But once my wife was settled, they kicked me out. The residential hospital wing was very serious about limits on patient visiting hours.

Being kicked out wasn't a bad thing. I walked a block and a half back to our Airbnb apartment, which is the nicest Airbnb place we have ever been in. It was a penthouse apartment in a nice, safe building that had a private gated garage and a swimming pool. It featured two bedrooms, two full baths, a nice living room, full (but small) kitchen, nice dining room, and a balcony. I'm guessing that it was reasonably priced due to the pandemic. I crawled into the king size bed and quickly dozed off.

I was pleased when I returned to the hospital the following day to find that my wife no longer required caffeine to regulate CSF leak symptoms. Dr. Schievink dropped by to check on my wife. He asked how the surgery had gone for her and then cheerily stated, "I had fun!"

The previous surgery was in the lower thoracic portion of the spine that curves in. This surgery was in the mid thoracic section that curves out. So the surgical site is right where the back normally touches against the back of any chair. This means that the recovery has been somewhat more challenging than for the first surgery.

The great news is that recovery is proceeding well. Following the required four-week wait, my wife recently started prescribed post surgical physical therapy to help rehabilitate the back muscles that were affected by the surgery. So far things look good, so we are optimistic.

Still, the doctor could not guarantee that my wife will never spring another CSF leak. Chances for developing a third spontaneous CSF leak are statistically very low. But the possibility still exists. To me the chance might seem higher for someone who has already developed two leaks, but Dr. Schievink suggested that his experience dictates otherwise.

So for now we are going forward optimistically. My wife has hope of getting back to life without restrictions following physical therapy. Compared to when the local specialist who told us that my wife would be permanently impaired, this is very welcome news indeed.

This has been an interesting (and expensive) journey. We started out with many MRIs and hitting dead end after dead end. Local specialists were nice but were ultimately not very helpful. After months of disappointing treatments, we discovered the Spinal CSF Leak Foundation through an internet search.

This led to my wife tuning into portions of their annual Leak Week symposium online. When she admired Dr. Schievink's presentation, I searched and discovered that he and Cedars-Sinai Hospital where he practices were both preferred providers on our insurance. After months of disappointment, this seemed almost too miraculous to be true.

We discovered that spontaneous CSF leaks are tricky. The expert team at Cedars Sinai tries to approach each case with care and caution. So far it has required five trips to LA to get to this point. But we kept feeling that we were on the right track.

If you or someone you know is dealing with CFS leak symptoms, please know that help is available. Maybe not locally. It is, after all, classed as a rare disease. But there is hope for once again living a normal life.

Tuesday, August 04, 2020

Adventures in cerebrospinal fluid leakage: part 5

Part 5 in a series about my wife's spontaneous cerebrospinal fluid leak condition. See part 1, part 2, part 3, part 4.

TL;DR  My wife's central nervous system (CNS) spontaneously sprang a leak two years ago. Nobody knows why. Too little pressure in the CNS causes a raft of persistent problems, including nasty head pain that never goes away, hearing problems, mental fog, etc. We have been on the hunt for successful treatment since then, with some successes and a lot of failures.  

We are almost two years into this interesting and expensive adventure. We have learned a lot about CSF leaks and how to treat them. Professional resources have independently confirmed that the CSF Expert Team at Cedars Sinai Hospital in Los Angeles is the world's best for this condition. As reported in earlier posts, this team and facility just happened to be preferred providers on our insurance. So the fact that we can use their services seems like something of a miracle.

My wife has been treated by this team four times over the past year. She has been helped, but she still has continual CSF leak problems. She constantly has a headache that can only partially be alleviated by taking caffeine and by lying down. She has developed hearing disparity and occasional mental fog. This is certainly survivable, but it seriously impacts life quality.

As mentioned in a note at the end of part 4, the imaging and blood patch procedures my wife had in February ended up improving her condition only temporarily. We later learned that during our stay in Los Angeles, COVID-19 was spreading rapidly through the area, although nobody realized this until a few weeks later. Fortunately, we escaped without contracting the virus.

In June we returned to Cedars Sinai for a fibrin glue patch. It's essentially the same thing as an epidural blood patch, but using fibrin glue instead of the patient's own blood. Fibrin glue is a product that is made from the stickiest part of human blood. They hadn't found noticeable leaks during two digital subtraction myelograms (aka DSM) during our February visit, so specialists surmised that any leak would be small enough for an epidural blood patch to be effective. That turned out not to be the case.

Conditions in Los Angeles were bizarrely different when we returned in June. Due to the pandemic, many are understandably reluctant to stay in hotels or Airbnbs, but we figured it was an acceptable risk. The Airbnb apartment we rented was just fine. It was within walking distance of the hospital. But the area, which had been crazily busy during our previous three visits, seemed like a ghost town in comparison.

Many businesses were boarded up, although some businesses were taking plywood off their store fronts during our visit. The Target store in the area had closed down permanently. Vehicle and pedestrian traffic was down to about 20%-25% of what it had been during previous visits. Some restaurants had reopened. Every business that was open had face mask and social distancing requirements. Other than the hospital, the one restaurant meal, and a couple of trips to the nearby CVS Pharmacy, we hardly interacted directly with anybody while in LA.

The first order of business was for my wife to have a drive-thru COVID-19 test. Cedars Sinai required the procedure to be done at their location within 24 hours of her scheduled surgical procedure. They told us that if we didn't hear anything, it meant that she had tested negative for the virus and we could show up for her procedure the following day. They actually ended up contacting us a few hours later to say that the test was negative. We had dinner at a nearby diner that was taking stringent precautions to prevent viral spread.

When we arrived at the hospital for the procedure the following day, we went through the check-in procedure with a few more precautions than usual, such as having temperature taken, answering questions, and wearing face masks at all times. Then we were taken to the same surgical center waiting room where I have spent many hours. Only this time, there were only three other people in the large room instead of 30-40 people. They had already made it clear that I could not come into pre-op or post-op, where I had been welcome during previous procedures. Once my wife went to pre-op, I was required to leave the hospital until they notified me that my wife was ready to be picked up.

It wasn't long before we said our goodbyes as my wife went to pre-op with a nurse and I walked back to our Airbnb apartment to spend the day working. I received some texts from the surgery team notifying me of how things were going. Eventually I received a text from my wife telling me that she wished I was with her in post-op, because she was terribly bored. Cedars Sinai requires patients who have had an epidural procedure to lie still for four hours in post-op. Our local hospital required only one hour.

Eventually it was time to pick my wife up. I drove into the pickup lane in the hospital's parking garage and waited a good 15 minutes before they brought her to the parking garage in a wheelchair. We were soon back in our Airbnb apartment, where my wife was required to rest and avoid bending her spine for two days. More boredom. We don't do much TV watching, so that kind of thing grows old, even with access to various streaming services.

On this particular trip, we got up very early one morning and drove straight through to LA from our home, stopping for food, gas, and potty breaks. We did the same thing on the way home. Leaving LA at 5 am during the pandemic made for the lightest traffic I have ever experienced in the area. We made record time.

Despite carefully following post operative instructions and being extra careful with her spine, within a couple of weeks my wife once again began experiencing CSF leak symptoms. The CS expert team has determined that another round of DSMs will be needed. They will apparently look at parts of the spine that have not been scanned in previous imaging, mainly because they almost never find leaks in those regions. The team hopes to discover one or more leak sources so that they have a clear idea of where to do surgery, instead of just working on what appear to be the most egregious perineural cysts.

We would like to hope that our upcoming trip to Cedars Sinai in a few weeks will be our last trip for surgical treatment at the facility. But it probably won't be. We still feel like we're on the right track. It seems that sticking with the expert team at CS is our best hope for achieving a permanent resolution to my wife's CSF leak problems. I will report outcomes in a future post.

See part 6 for the continuing saga.