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.

Monday, May 18, 2020

Mr. Wood's Opus: Our daughter makes sure the retirement of her high school choir teacher didn't get lost in the pandemic morass

One day in February my daughter excitedly reported that the senior class choir officers at the high school had a plan to recruit former students of the school's longtime choir director to join in singing a number at the final concert of the year. Mr. Wood has been teaching music in the school district for 36 years and has taught choir at the high school for 27 years (the same school he attended as a youth). Our daughter recruited two of her brothers to sing for the surprise music number.

Then the pandemic occurred. Schools were shut down. The school district canceled all springtime events of any kind, including the final choir concert. The plan for a surprise musical number to honor Mr. Wood died too. Almost.

My daughter kept talking to me about finding a way to honor Mr. Wood. I suggested that she should contact the senior choir officers. But as the weeks passed, it became clear that nothing was happening on that front. One teacher at the high school said that due to the pandemic situation, many seniors, including some of the best students in the school, were struggling to fulfill graduation requirements and complete concurrent enrollment courses. The senior choir officers were probably too swamped to think about much else.

A few weeks ago my daughter asked me if we could put together a video choir for Mr. Wood. We have all seen video choirs during the pandemic. The way it works is for each performer to listen to a choir track through earbuds or headphones, and take video of themselves singing so that only their voice is heard on the video. A little research revealed that I lacked the necessary equipment, software, and expertise. But my daughter was insistent.

After making it a matter of prayer, I was prompted to reach out to professional videographer Jason Hadley of Masterpiece Images. Jason was willing to help. He had the equipment and know-how. Besides, he has kids who have studied under Mr. Wood. Jason even provided a drive share where videos could be dropped.

The next step was to obtain the sheet music, accompaniment track, and choir track for the selected song. Mr. Wood had been teaching students in all of his choirs this year to sing a choir arrangement of the ABBA song Thank You for the Music, so we needed music that matched this arrangement. This proved to be difficult to find.

After praying about it, my wife suggested contacting the school's theater director, Mark Daniels, who knows about digital performance media and related rights. Mark said that the school had coincidentally just purchased the needed materials and performance rights. Mark made arrangements for us to use these materials.

Then we had to recruit current and former students of Mr. Wood to take video of themselves singing and drop their video in the drive share. Our daughter reached out to current students via email and social media. I put out a post on social media, having no idea where it would go or how it would turn out.

Thankfully, my social media post soon made its way to some of Mr. Wood's former students, one of whom turned it into a group which quickly added members. Many people liked the idea, but for several days, the only video on the drive was my daughter's. It can be pretty intimidating singing a solo instead of being physically surrounded by fellow choir members being directed by a conductor.

Little by little, videos started trickling in. Some were family groups, including siblings, parents and children, and extended family, all of whom had taken choir from Mr. Wood. A few days before the deadline I was concerned about the low response. As I prayed one morning, I sensed the Spirit telling me to chill out. This was not my project or even my daughter's project. It was God's project and it was going to work out better than I expected.

At the same time, the social media group took on a life of its own. People started posting memories of their time in choir with Mr. Wood. Mrs. Wood became a member of the group. She later told us that she spent a lot of time crying in the bathroom after reading wonderful comments about her husband. She wanted to keep it a surprise for him.

The final two days before the deadline were filled with responding to questions and issues regarding technical difficulties people were experiencing with uploading their videos. I am a software developer, so I am used to troubleshooting technical issues. We were able to successfully resolve many problems. I was pleased with the number of videos that poured in just before the deadline.

Jason ended up synchronizing 108 voices into the Scott Wood video tribute choir. He said that he was worried about what it would sound like when it all came together but it sounded fantastic. It really sounded like a cohesive choir, despite being spliced together from nearly 100 individual videos. Here is the final product:


At one point during this project, I wondered aloud why my daughter and I should be doing this. We weren't formally in charge of anything. It's just that our daughter felt strongly that Mr. Wood ought to be honored. She didn't want him to end his distinguished career on a whimper during the pandemic. My wife said that it was clear that God wanted the project to happen. She surmised that our daughter and I were the ones God could get to do something about it. Besides, it was good for us. God pulled in lots of other people, who each did their part.

Our plan was to present the video to Scott Wood on the day the cancelled choir concert would have been held. Mark Daniels made arrangements for a very small retirement ceremony in the school auditorium that day. Due to pandemic restrictions, only a dozen people attended, including Mrs. Wood and several family members. My daughter and I were privileged to be among the attendees.

Mr. Wood was completely surprised by the event. He was deeply moved as he watched students spanning 30 years singing for him. The audio of the choir in the auditorium was simply amazing. We captured some of Mr. Wood's reaction in this video:


As the Spirit had foretold, the event was even better than I had expected. God knows how to do his work. Following the event, we added Scott Wood to the social media group. He was able to read and respond to hundreds of heartwarming and beautiful messages. Our daughter is very pleased that Mr. Wood now knows that his career was very consequential in the lives of many.

I am so proud of our daughter. This project wouldn't have happened without her. She didn't have to do this, but she felt that it was the right thing to do. Our daughter loves performing arts, although she is not a star performer. The rest of the school experience is kind of rough for her. This project demonstrates the quality of our daughter's character, which is far more important than any academic achievement.

To Scott Wood I want to say, thank you for your career. Thanks for blessing the lives of our children. May you enjoy many wonderful retirement years.

Friday, March 13, 2020

Adventures in cerebrospinal fluid leakage: part 4

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

As the weeks passed following my wife's spinal surgery to close off the veinous fistula that was bleeding cerebrospinal fluid out of her central nervous system, her high pressure headaches abated. But then my wife once again began experiencing low pressure headaches. She didn't want to believe it at first.

One day after a few weeks of questioning whether she was really having CSF leak symptoms, I suggested that she take a caffeine pill to see what it did. She took the pill and soon experienced the same kind of relief she did before the surgery, as the caffeine caused vasoconstriction, increasing the fluid pressure in the central nervous system. She begrudgingly admitted that she must still be leaking CSF fluid.

My wife soon began once again working with the CSF Leak Expert Team at Cedars Sinai Hospital in Los Angeles, where she had previously been treated. After having yet another MRI done locally and then providing that image to the experts in Los Angeles, the team arranged for us to return to Cedars Sinai for another digital subtraction myelogram (DSM) and probable surgery. Having resolved a major leak on the left side of the spine, they suspected another leak on the right side that would require surgical treatment.

We drove to Las Vegas one day, stayed in a very nicely appointed Motel 6 away from all the glitz, and left early the following morning, arriving in Los Angeles around noon. We learned from our October 2019 trip that it's a really bad idea to drive from Las Vegas to Los Angeles on a Sunday afternoon/evening. Apparently more than a few Southern Californians go to Las Vegas for weekend getaways, resulting in very heavy traffic as they drive back home in time to get to work on Monday.

Mid February found us in a lovely Airbnb apartment just a couple of blocks from Cedars Sinai in West Hollywood. The weather was quite mild during our eight-day stay. We knew the routine well when we showed up for the DSM on a Monday morning. The DSM is a surgical procedure performed under general anesthesia, where they inject dye into the CSF fluid and do imaging to see where the dye goes. If they see something, they literally stop the patient's breathing for up to 90 seconds at a time to get the best image possible.

After a number of hours of pre-op and then the procedure, the imaging surgeon came to the waiting room to tell me that they had found no CSF leak. A spinal DSM can only be done on one side of the body at a time. While I was in post-op with my wife, Dr. Wouter Schievink, who is the head of the CSF leak program at Cedars Sinai came and chatted with us. Having found no leak on the right side, he suggested doing another DSM the following day to see if the left side had sprung another leak.


Tuesday was a repeat of Monday. Once again, when the imaging surgeon reported to me in the waiting room, he said that they found no leak on the left side. But he did say that they confirmed that October's surgery had been very successful. At first I was disappointed. But as I sat there waiting for the time when I could join my wife in post-op, it occurred to me that this likely meant that the leak was too small to see using available technology, small enough to be resolved by a spinal blood patch.

Over the preceding year and a half, my wife had had a series of spinal blood patch procedures, including a specialized blood patch done at Cedars Sinai last July. Each of these procedures failed quickly. After they found the veinous fistula leak in October, Dr. Schievink explained that the fistula leak was simply too large for the blood patch procedure to work.

We were not surprised when Dr. Schievink visited us in post-op that Tuesday and recommended another double blood patch procedure. He suspected that the small hole from inserting the dye for the October DSM had failed to seal, although such holes usually seal on their own for most patients. If that was the case, the two new holes from the two DSMs that had just been done would likely present the same problem. From his experience, he felt that the blood patch procedure would most likely remedy all three holes with no problem.

A couple of days later, my wife was once again wheeled into the operating room for her third surgical procedure of the week using general anesthesia. My wife does not respond well to narcotics, but it is common practice for anesthesiologists to add narcotic to the IV of surgical patients receiving general anesthesia to mitigate surgical pain. Having already been quite nauseous twice that week, my wife prevailed on the anesthesiologist to omit the narcotic.

My wife was much more alert and happy when I joined her in post-op than she had been on all of her previous surgical procedures. But she soon found her back at the sites of the blood injections to be much more sore than she had imagined. Fortunately, over the counter extra strength Tylenol sufficed in managing that pain.

The next couple of days my wife experienced a mild high pressure headache, which was helped by drinking dandelion tea, as recommended by the experts at Cedars Sinai. Not wanting to cause any problems with the procedure, my wife carefully followed recommendations to avoid lifting, as well as bending and twisting of the spine. By the end of the weekend, however, my wife had no more headaches, no hearing disparity, and no mental fog. It was clear to her that all of her CSF leaks were gone. It felt like a tremendous miracle after a year and a half of suffering.

We had to stay the weekend so that we could meet with Dr. Schievink the following Monday. The idea was to allow the spine to settle before doing a final exam. By the time we were meeting with the surgeon, my wife was experiencing some pain and weakness in her lower back and down the backs of her legs. Dr. Schievink said that this is a very common side effect of the spinal blood patch procedure and that it would gradually resolve over the next 2-8 weeks. When my wife wondered why she had never had similar pain with previous blood patch procedures, the answer was that those blood patches had failed, while this one was working.

Several weeks have now passed since we returned home. My wife is still being very careful about lifting, twisting, and bending. She is following recommendations to gradually increase these activities over a 90-day period. So far, so good. She still has some mild pain in the backs of her legs, but it seems to be getting a little better with each passing day. It seems like a small price to pay to be rid of the CSF leak symptoms.

As we reflect on the journey that began with a severe nonstop headache in August 2018 and led to three trips to California, we feel very blessed. It has been expensive, but we have been blessed to be able to manage the expense. Last spring we were despondent about the unsuccessful treatment that my wife had received locally, the expense, and the seemingly endless requirement for various types of MRIs. We thought there was no solution and we grimly considered the possibility that my wife would suffer CSF leak symptoms for the rest of her life.

We had searched the internet for better information for months. But a chance series of links took us to the nonprofit CSF Leak Foundation. While watching their annual Leakweek online seminar, my wife found Dr. Schievink and his program at Cedars Sinai. It seemed like an impossible coincidence when I discovered that Dr. Schievink and Cedars Sinai were both preferred providers on our health insurance. What are the chances of that happening?

Today my wife is free of CSF leak symptoms and we hope she remains that way. Dr. Schievink asked us to visit him again in a year so that they can do some before/after comparison of my wife's brain scans, and consult about her case. So I may post a follow-up at that time.

While we are very grateful, we also know that there are a number of people out there suffering spontaneous CSF leak symptoms who either don't know what condition they have or else have no idea of how to find solutions. Since this is a rare disease, most doctors and neurologists know little or nothing about it or how to properly treat it. There are many people who feel hopeless, like we did before we discovered the CSF Leak Foundation.

Spinal CSF leak symptoms include:

  • Positional headaches, which feel worse when sitting upright and better when lying down; caused by intracranial hypotension
  • Nausea and vomiting
  • Neck pain or stiffness
  • Change in hearing (muffled, ringing in the ears)
  • Sense of imbalance
  • Photophobia (sensitivity to light)
  • Phonophobia (sensitivity to sound)
  • Pain between the shoulder blades

Cranial CSF leak symptoms include:

  • Drainage from the nose (rhinorrhea)
  • Salty or metallic taste in the mouth
  • Sense of drainage down back of throat
  • Drainage from the ear (otorrhea)
  • Cutaneous sinus tract drainage (CSF leaks into the sinus tract, which then creates a pathway to drain through the skin)
  • Loss of sense of smell (anosmia)
  • Change in hearing or ringing in the ears

If you know anyone hopelessly dealing with these issues, point them to the CSF Leak Foundation and/or the CSF Leak program at Cedars Sinai to explore whether they might find answers and perhaps complete healing. We are so happy it worked out that way for us.


Update 3/28/2020: Well, it was too good to last. My wife is once again experiencing CSF leak symptoms. The last blood patches were only temporarily effective. We are considering our options. So stand by for part 5 at some future point.

See part 5 for the next part of the story.

Tuesday, January 21, 2020

The brother I never knew ... until now

My parents hardly ever talked about one of my brothers. As far as I knew, my parents had five sons (and no daughters until daughters-in-law and granddaughters came along). I remember Mom once telling me that between my birth and the birth of my brother three years later, she carried to full term a baby boy who was stillborn. I was too young to comprehend the kind of pain Mom and Dad must have experienced as the result of this trial.

Once as a teenager I asked Mom where the stillborn child was buried. She replied that back in those days nobody did anything like that. The child's body was treated as biowaste. No name or other information was recorded. It was as if the child never happened. I still don't know the date, or even the year of this event. I couldn't understand Mom's seemingly deliberate vagueness surrounding this child until I had my own kids and grasped in some small way the emotional pain Mom still felt.

Nearly a year after Dad's stroke, he ended up in the intensive care unit when the antibiotic prescribed by his dentist caused a bowel perforation because Dad was also taking blood thinners. Dad wasn't terribly coherent during the first couple of days in the hospital. When he did become more lucid, he kept telling hospital workers that he and Mom had six sons. My brother showed Dad a family photo with only five sons. Dad was befuddled. He was absolutely certain that he had six sons.

Some years later, Mom confided in me that she had very much appreciated my brother and sister-in-law naming their younger son Matthew. She explained that this was the name she and Dad had picked out for the baby that didn't survive. That was news to me, although I was in my sixth decade of life by then.

Mom spent the last 2½ years of her life in a small eldercare facility near our home. Although this was a nice facility with caring staff, it was hard to watch Mom decline physically and mentally as she aged and suffered a long series of brain "microbleeds" and small strokes for which the medical industry could do nothing.

A few weeks before Mom's passing last autumn, I gave Mom a priesthood blessing following yet another small stroke that had left her a little more impaired than before. Suddenly I knew Dad was in the room with us. His presence was strong throughout the blessing. It is difficult to describe this to someone who hasn't had such an experience. I couldn't see Dad, but there is absolutely no question that he was personally present. I felt comforted and I know Mom did too.

But that wasn't the end of it. Over the next two days, I sensed Dad's presence about eight or nine times. Each episode left me feeling uplifted. I gathered that these visits were part of the preparations for Mom passing through the veil. But there seemed to be something more. Otherwise, why would Dad keep visiting?

Finally one morning when I again felt Dad in the room, it dawned on me that maybe I should ask whether he had a message for me. As soon as I asked, the words forcefully blasted into my mind, "I love my wife! I love my wife! I love my wife!" Having been raised a stoic northern German under Hitler's reign, Dad could be stiff and curt with Mom and us kids. But in this instance I felt a love that is as wide and as deep as eternity, laced with a tenderness that I can't describe in human terms.

Suddenly I felt Dad's words cheerily come into my mind saying, "I am here with your brother Matthew." I then sensed a pure being of magnificent brightness. He felt ... familiar. I realized that this person had ministered to me and my family many times in the past. In fact, I sensed that ministering to his siblings and their families was one of his chief duties. I asked whether Matthew's information should be put on our family history records and was told that this was not necessary.

Not long after that, we visited Mom at the care facility one day and found her unusually lucid. I told Mom about this experience and asked what she thought. She pondered a bit before her facial expression became quite pleasant. Then she said, "I think that's right."

I didn't feel Dad's presence like that again until my brother, my nephew, and I gave Mom a blessing a few hours before she passed away. We sensed many other loved ones from beyond the veil as well. It was a very tender moment.

The doctrine surrounding stillborn children is undefined. Perhaps that's because there is a great deal of variability and uniqueness among the cases. So, while I can't say anything about other stillborn children, I can say is that my brother Matthew is very much active in the spirit world. I'm grateful that he ministers to my family and I look forward to someday meeting him in a setting where we can more fully interact.

Monday, November 18, 2019

Adventures in cerebrospinal fluid leakage: part 3 (hopefully the conclusion)

I sat in what had become a familiar waiting room on the eighth floor of Cedars-Sinai Hospital in Los Angeles, focused intently on my laptop. I fortunately have a job where I can work remotely. I was getting some work done, but it wasn't easy.

See part 1 (4/2/19) and part 2 (8/7/19) for background.

We had arrived at the hospital at 5 am and were pleased to discover that my wife's patient number was the first one listed on the operating room monitor. Other patients and their families had filtered in over the following couple of hours. Eventually they took my wife to pre-op. The variety of small human dramas that played out before me among the room's occupants was distracting. Not just from my work, but also from the fact that my wife was somewhere beyond the nearby double doors preparing for a major surgical operation.

Thankfully, I wasn't terribly nervous. Two days earlier my wife had undergone an imaging process called a digital subtraction myelogram, which itself was a serious procedure done in an operating room. They employed general anesthesia and literally stopped my wife's breathing for up to 90 seconds at a time to get images uncorrupted by bodily movement.

They can only do the myelogram on one side of the spine at a time, so there was a chance that a second myelogram would be needed the following day. But the doctor strongly suspected that the CSF leak would be found on the left side and he was correct.

The myelogram revealed a veinous structure that had attached itself to the dura mater in the T11-T12 area of the spine. It was sucking CSF out of what is supposed to be a closed system. This resulted in intracranial hypotension, nonstop severe headaches, hearing disparity, and mental fog; symptoms that had significantly impacted my wife's life quality for more than 14 months.

The doctor was so thrilled with the myelogram images that he sent them to a colleague in the UK whom he had recently trained, as an example of what to look for. He explained that this image revealed exactly where the problem was. As perhaps the world's foremost expert on this condition, this doctor had performed hundreds (perhaps thousands) of similar surgeries with good results. He said that this was the sole problem and that he could fix it. So we were hopeful.

Hours passed as I sat in the waiting room working away. I quite enjoyed watching one family that brought six adults and one older teen to accompany their loved one. This family obviously loved each other. Finally, seven hours after arriving, I was guided to the post-op center, where my wife was groggily recovering from the anesthesia. Bit by bit, she became more coherent.

The doctor dropped by and jauntily explained how he had put an aneurysm clip on the veinous structure, completely stopping the leak. He made it sound like a 30-second procedure. But my wife had been in surgery for hours and ended up spending three days in the hospital following the surgery. This was no minor procedure.

During the three days my wife was in the hospital, she was given a lot of drugs for pain management. She shifted from having low-pressure headaches to having high-pressure headaches. The doctor explained that it would take time for her body to stop over-manufacturing CSF, which it had been doing to try to compensate for the leak.

They gave my wife a medication that helped reduce the CSF overproduction. It contained a sulfa derivative. We knew that my wife had a sulfa allergy, but we determined to use the drug anyway. The drug was very helpful, but my wife later developed some histamine responses before she was able to discontinue the drug a week and a half later.

About a day and a half after being released from the hospital, my wife was finally "herself" again. She never thought she wasn't her normal self. But I knew otherwise. She did much better as she dialed back on the drugs they sent home with us.

Speaking of home, we were many hundreds of miles away from home. During our July trip to Cedars-Sinai, we stayed in a hotel that was a little over a mile away from the medical center. The room was clean. But it was cramped. We grew to despise being in that puny room. The neighborhood and the facility itself felt unsafe. Sometimes you could find homeless people crashed in the corner of the tiny parking garage or using the tiny restroom across from the little main office. We were so glad to leave.

This time around, we opted for an Airbnb apartment a block away from the hospital. For a few dollars more per night than we had spent for a crappy, puny, less-than-safe hotel room, we got an entire apartment with two bedrooms, two full baths, a living room, a dining room, and an equipped kitchen, in a safe building with a gated parking garage. The neighborhood felt relatively safe. We didn't get a free continental breakfast like we did at the scary hotel, but we hardly cared.

At the apartment, I had a desk to work at, a nice couch, and an entertainment center. I liked the beds so well that I pulled up the mattress to get the info from the tag. I seriously wanted to replace our mattress at home with one like we had at the apartment. This was our first time using Airbnb, and we were very pleased. It really felt like a home away from home. Two thumbs up.

It's a good thing we had a decent place to stay. We had to remain in LA for several days to await my wife's follow-up appointment with the surgeon. They checked her over pretty carefully and gave us final instructions, before clearing her to go home. We had been told all along that my wife would need to restrict bending, twisting, and lifting for a month following the surgery and that she would then need to do some physical therapy to rehabilitate the surgical site.

It has been almost a month since my wife's surgery. Her high-pressure headaches have pretty much abated, as the doctor said they would. She has been careful, as prescribed. Unfortunately, she caught a virus that kept her down for awhile. She now thinks this was a boon, because she otherwise would have felt good enough to undertake activities she was supposed to avoid. Physical therapy will begin later this week.

While my wife is still dealing with the aftermath of the surgery, she says that it was worth it to get rid of the CSF leak. When I asked her to compare how she feels today with how she was feeling before any of this CSF leak mess started, she told me to ask her again in three months when she is fully recovered. But she affirms that the surgery and its aftermath were small prices to pay for the relief she is experiencing.

The surgeon told us that after my wife fully recovers from the surgery, she should have no restrictions and that her condition should pretty much be as if she never had a CSF leak at all. Well, except for the three-inch incision scar in the middle of her back. I suppose we can consider that a souvenir of this interesting experience. That, and our stack of medical bills.

Even with good insurance, this CSF leak has cost us a lot of money out of pocket. We count ourselves lucky to have found one of the world's greatest experts in CSF leaks and the facility where he works to be on our insurance preferred provider list. How many people lack such a boon? How many people with CSF leaks are struggling with daily pain like my wife was, but without any knowledge of how to fix it, or even hope that it can be fixed? We have many blessings to count.

Update 1/21/2020: This story isn't over yet. More problems have ensued. We're headed back to Los Angeles in a few weeks for more invasive surgery. They can't even really tell us what that will look like until they do more imaging the day prior to the surgery. But my wife's hospital stay is slated to be longer. I will write about how it all goes.

See part 4 for more of the story.

Wednesday, October 23, 2019

A Tribute to My Magnificent, Flawed Mom

Mom never felt a need to be important. Rather, she was strongly motivated by a need to reach out and serve others, as well as a desire to develop and nourish relationships with others. Mom was always juggling a hundred different things to meet our family's needs and to bless the lives of others. I'm told that this started when she was a little girl who took frequent opportunities to care for nieces and nephews.

Being the 11th of 12 children and growing up during the Great Depression likely prompted Mom's lifelong obsession with fairness. A few years ago I found a small notebook that included a list of prices under the names of my brothers and me for the Christmas when I was 13 years old. The sums of the columns differed by only a few cents. Dad thought that fairness had more to do with customized individual needs, but Mom's version of fairness seemed to be more a matter of mathematical equality.

Despite never needing to feel important, appearances were important to Mom. While in high school, she worked three jobs in the summer and then worked at the local drugstore during the school year to earn money. More than a little of that money went toward clothes much nicer than her parents' family economy could afford.

When I was young, our family's approaches to matters were more than a little bit governed by what the neighbors might think. More than one of my brothers chafed at the idea of being controlled by some nebulous group of "they" out there. I now believe that we sometimes got Mom wrong on this. She was likely more concerned about being charitable to others than about trying to superficially look good.

Mom was not afraid of difficult things. She might grouse about it along the way. But she would still forge ahead and deal with whatever the path brought. I was around seven years old when I became aware that Mom had suffered her third miscarriage in a row. Years later I learned that following my birth, Mom had carried a son to full term, only to have the child stillborn. I could tell that Mom was a little melancholy following her third miscarriage, but she took all of these things in stride and moved on with the normal duties of life. Only when I was much older did I realize how devastated she might have been.

Since hard things were not to be avoided, Mom extended this sentiment to her five sons. We tried to grow vegetables in the back yard a couple of years, but Mom had a distaste for the Wyoming farm life of her youth and Dad had grown up as a city boy in Germany. So our agricultural efforts fell flat. But every single time a neighbor called during harvest season to ask if Mom wanted whatever it was they had growing, Mom would say, "I'll send my boys over to pick some." I liked to eat some (but not all) of those things, but I never liked picking any of them.

My oldest brother got a newspaper route when I was a kid. This was back in the day when news carriers had to go door to door to collect subscription fees each month. They also had to manage the finances for their routes. For the next decade, that route and the neighboring route cycled through the boys in our family. Who do you think was the main support staff for us? You guess it: Mom.

In a remarkable occurrence, Mom served a two-year mission for The Church of Jesus Christ of Latter-day Saints in Germany at the personal invitation of Gordon B. Hinckley when she was two years younger than the minimum age for sister missionaries. Toward the end of her mission, she met a young German man who joined the Church. They corresponded after she returned home. He eventually emigrated to the States, married Mom, and became my dad. So, I guess I owe my very life to Gordon B. Hinckley.

Mom was not above being manipulative to motivate her sons to do the right thing, or at least what she thought was the right thing. I was scarred for years after Mom told me as a young child that I would sustain a skin crease between my eyes if I didn't stop pouting so much. It took many years before I realized that this was a genetic trait that would be little affected by the faces I pulled as a kid.

As a young adult I took a break from the rigors of college for a few terms so that I could pursue other opportunities. In her desire to get me to go back to school, Mom once embarrassed me in front of some of my friends who were still in college. That hurt. But it didn't get me to go back to school at that time. Only my wife's gentle persistent encouragement and sustained confidence in me brought that about years later.

There was no internet during my youth and the TV shows we watched were mostly inane and uninformative. So when we were young, Mom was often our chief source of information. I could always tell when one of us broached a topic that was dicey for Mom to deal with. She would sometimes avoid direct answers, but most of the time she would parse through a children's version using terminology with which we were familiar.

I still remember the time she responded to my question about what rape was when I was young. Her child-level explanation was roughly factual but was crafted to shield us from the horror of such a violent act. Despite my youth, I can remember thinking about Mom's words and developing a strong sense of revulsion to sexual violence on my own.

Mom had her own vocabulary for many sensitive things, such as certain body parts and bodily functions. I recall coming to the realization at one point that this was private family jargon that was foreign to my peers. Being boys, we often wrangled these terms into newfangled lingo that was usually intended for comedic or insulting effect. Mom frequently complained about how every family gathering at some point ended up devolving into scatological discourse. Such is one of the problems with living in a house full of boys. My poor mother.

When I was five years old, Mom took a seasonal swing shift job as a data entry clerk so that she and Dad could save money for a dream trip to visit Dad's family in Germany. They wanted to take their children with them, but they ultimately realized that the kids would be grown before they could save enough money. So when I was eight, Mom and Dad farmed us out to gracious neighbors and spent a month in Germany.

I hated the seasons when Mom had to work her swing shift job. She would be gone by the time I got home from school. She would get home so late at night that she would still be in bed when I left for school in the morning. After we went to bed on Sunday night, we sometimes wouldn't see Mom until late Saturday morning.

I liked it better when Mom moved to the day shift. But she didn't, because her part-time seasonal position suddenly shifted to a full-time job. It later became a career, at which she excelled. Dad once told me that the day Mom went to work was a good day for us kids, because prior to that she had a penchant for micromanaging our play and activities. All with the best intent, of course. After going to work, Mom had to leave us to our own devices much more. But that doesn't mean that we left her to her own interests.

Mom was always there to help with every school project that arose. I was never very good with that stuff, so Mom usually had to provide a lot of ideas and do a lot of work. She would never take over. She would insist that I make the decisions (with her careful guidance) and that I stay in charge every step of the way. My projects never looked as slick as those of other kids who were more creative or whose parents did more work on their projects. But I felt like each project was mine.

Some of my earliest memories revolve around Mom sewing with her antique Singer sewing machine. In my mind, Mom had a love-hate relationship with sewing. She insisted on making matching shirts for Dad and all of the boys. She sewed book bags for us to use for school and crafted toddler sized boy dolls. In the 70s when bizarre leisure suits were all the rage, Mom literally sewed leisure suits for all of us boys.

Mom must have loved sewing, because she worked so hard at it, often late into the evening. But she also seemed to hate it because she knew that her projects never quite matched the quality of store bought clothing. It particularly chagrined her when better fitting store bought clothes started becoming much cheaper than lovingly hand sewn items.

Even after Mom got a swanky newfangled sewing machine, she often pulled out the ancient Singer machine to do certain types of stitches. When my youngest brother married, Mom gave him and his wife her old Singer machine. My sister-in-law didn't sew, so they saw no use for the machine. They donated it to charity, only to later learn that Mom had hoped to sell it for the antique that it was.

Speaking of machines, Mom was a master of the typewriter. I remember when Mom got her first electric typewriter that had a correcting function. Her typing speed was very high and she rarely needed the correction function. Mom was also an early adopter of the home PC and the word processor, at which she learned to excel.

When I was a young adult, a family that had a long term relationship with our family invited us to enjoy an evening of swimming at their backyard pool. Mom and Dad had always been quite conservative financially. So it shocked me to the core a week later when a local firm was in our back yard digging a hole and installing a real in-ground swimming pool with a diving board.

My parents later explained that they had been thinking for years about how to keep drawing the family together as the children got older. They had gone back and forth between getting a pool or getting a boat. After the swim party, they went with the pool. And it really did work. Over the next three decades the family spent many days gathering, swimming, cooking out, and hanging out.

When grandchildren came along, Mom threw herself into blessing their lives, especially after she and Dad retired. Sometimes this meant spoiling them with more birthday and Christmas gifts than their parents gave them. One of Mom's specialties was making personalized birthday cakes for each grandchild each year. As the number of grandchildren grew, this task started to become overwhelming, although, the grandchildren loved their cakes.

Several years after they both retired, Mom and Dad served a mission for the Church in Hamburg, Germany, the same city where they had met many years earlier. Mom tried to keep close tabs with family members while they were away, just as she had written each of her sons weekly while they served as missionaries. Upon arriving home, Mom and Dad felt somewhat disoriented, like they had just climbed off a wild carnival ride and were suddenly standing still.

3½ years later when Dad suffered a debilitating stroke, Mom became Dad's main caregiver, just after having serious surgery on her foot. The next year and a half were nightmarishly overtaxing for Mom, who continued unwaveringly devoted. Dad wasn't always able to express himself and he often behaved irrationally. It wasn't always clear how much of this was due to the stroke damage or the complex array of medications they threw at him.

Mom made the best of Dad's situation. But in trying to cope with this new reality, she tried to help Dad by putting him on a healthy but miserable diet that might have helped prevent congestive heart failure had it been implemented decades earlier. Following Dad's second stroke, Mom almost never left the hospital until Dad passed away a week and a half later.

On his deathbed, Dad had me promise that I would get Mom out of the home they had moved into 4½ decades earlier. But Mom wouldn't go. She had difficulty relinquishing anything Dad had touched, including the home, his truck, his clothes, etc. That's one common way that some people deal with grief.

After several years, aging (both Mom and the house), arthritis, etc., Mom finally relented and allowed us to sell her house. We moved her into a lovely single level home that was more manageable. Mom continually complained to everyone she encountered about the new home's shortcomings. It wasn't really the home that was the problem, it was widowhood and aging. The house was just a scapegoat. She still continued to reach out and serve others as much as possible even as life became increasingly challenging.

I now realize that Mom was already several years into vascular dementia by the time Dad had his first stroke. Mom never had significant heart problems, but we later discovered that she had been experiencing regular cerebral microbleeds.

We were told that doctors have little understanding of the causes and treatments for this condition. They do know that each microbleed results in a small amount of permanent cognitive impairment. While most episodes are hardly noticeable, the cumulative effect can be debilitating. That's how it worked for Mom.

Over time it became increasingly challenging for Mom to manage her own affairs. We were glad when she admitted that she could no longer safely drive a car. But cognitive impairment also impacted Mom's gait and stability. My wife became Mom's principal caregiver and companion. She also became Mom's service arm, performing many acts of service on behalf of Mom. But my wife couldn't be with Mom all the time.

After 5½ years in the new home, it became clear that Mom was no longer safe living on her own. Our home is full of stairs and was completely unsuitable to Mom's condition. Mom ended up moving to a nice smaller assisted living center just a few blocks from her home and our home. She again made the best of the situation, although, it bothered her to be there with many people who were obviously more impaired than she was.

Over the next 2½ years, Mom went from being one of the lesser impaired residents of the facility to being one of the more impaired residents, both physically and cognitively. She eventually moved to the cognitive care unit that provided a higher level of care. Several small strokes resulted in Mom becoming confined to a wheelchair.

During the final half year of Mom's life, she declined fairly steadily both cognitively and physically. She would have periods where she would stabilize and other periods where she seemed to improve briefly. Following yet another small stroke, which didn't seem much different than previous small strokes, Mom's condition deteriorated rapidly until she passed away peacefully a week later.

After 87 years of living Mom didn't leave behind any notable things, other than her posterity. She didn't write music or create serious artwork. She hadn't accumulated nice collections of things. If her life could be boiled down to two words, those words would be work and service. Underlying those two words is really one word: love. Her way of showing love might differ from the way others do it, but it's who my mom was and is. I know that she is continuing this pattern. She is busy working and serving even now.