Coming Home

On this cool morning, I’m sitting on my friends’ porch. The sound of birds and farm equipment during harvest soothe my soul. The blueberry fields across the road form lovely lines and in the distance the swathed grass seed awaits the combine. I hear the mourning doves and maybe some pigeons, along with a choir of other birds. Maisy hasn’t discovered that I’m here yet. She’s a happy Swiss Bernese Mountain Dog that I have enjoyed since she was just a puppy. Now she’s a very large one year old. Bumblebees enjoy the salvia in front of me. The long porch with white wooden rocking chairs feels so inviting. I feel incredibly blessed.
Just after sunrise this morning, I checked on Jackie and Ken. He’s settling in since arriving back home from the care facility yesterday. This wonderful couple is adapting so well already. She lovingly guides him and he manages to get up and around with the right equipment. Delighted at being reunited, they smile a lot, and their good humor and obvious love for each other touches my heart. Married almost as long as I’ve been alive, they have a wonderful partnership. I think she said they’ve lived in the same house for 50 years now. The only time they’d been apart, except for during COVID after his health crisis, was when he biked across the entire US, and another time when he biked from Canada to Mexico. This couple knows how to live! At the care facility, they were only allowed to see each other through a little window, and that felt like torture. Their obviously close friendship inspires me.
I hope Jerry and I continue to cultivate such a vibrant relationship that endures for decades. When we’re old, I hope we’ll care for one another joyfully, sharing our sorrows and challenges with grace and humor. Sometimes we do well at that. Sometimes we don’t. We’re human.
We already have plenty of physical limitations and conditions to overcome together. We grieve inwardly, and outwardly that grief shows up in various ways.  Sometimes I need to remember that anger is a dimension of grief, and if not expressed in healthy ways, it will show up in strange ways.  More on that in another blog. We’ve made it through a lot in these five years. I love Romans 8 where it talks about how nothing can separate us from His love, and how God causes all things to work together for those who love Him and are called according to His purpose. Somehow our love grows stronger as we endure various trials. Somehow, by God’s infinite grace, we grow closer to the LORD and as a result we learn about His Hesed. God’s steadfast, enduring devotion, His covenant love…we get to experience these things in our marriage. We get to experience hanging in there when things are challenging. We learn about loving each other when love doesn’t come naturally. We find a way to forgive each other when we fail miserably. We carry on and we forgive one another because He first forgave us, even when we were hostile to Him. He loves us with a steadfast love. Marriage is a wonderful classroom.  A living laboratory. A chance to fail, to grow, to persevere. To reach the end of ourselves, and allow Him to heal and transform the broken places that painful times reveal.
I call marriage the Beautiful Struggle.

Creating Space for What Matters Most

Sometimes we can get caught up in working towards a goal, and in the midst of learning and trying to accomplish something, we lose sight of how this may be impacting us and our relationships.

Recently I made a prayerful decision to let go of a goal, for whatever time God leads me to do so. God gave me guidance in a number of ways…all culminating in a moment when the blur and strain of various responsibilities, emotions and concerns I’d been carrying over the past few months came into focus.

God spoke to my heart in the grocery store, when a fairly simple task felt like a big challenge. The motorized cart I used to gather the groceries for Thanksgiving dinner was full (and I had a few groceries already setting around my feet) and I couldn’t seem to find the frozen turkeys. People pointed here and there as they guessed where the turkeys were kept, but none of their guesses were anything more than a wild goose chase. I wanted to finish and go pick up my mom from her appointment, but I needed to find the turkey first. For a moment, I felt like pulling over and crying. Instead, I prayed, “Please help me, God.”

Finally, I asked the woman at the deli where they kept the turkeys, and whether someone could help me get the turkey to the check-out stand in the front of the store. She pointed at a freezer “island” in the back of the store, and she paged someone to help me. Before the customer service woman arrived to help, a nice young man working in produce (his first day on the job) picked up the 20 lb. turkey I pointed to, and he gladly carried the turkey up to the check-out stand where I took my place in line.

I am thankful for how God spoke an important truth to my heart as I rode the motorized cart around the store, and finally got the turkey and other groceries loaded into my van. Like that cart, my life had gotten too full recently. Health issues and major life transitions of loved ones, the recent loss of a beloved family member, and various other concerns all weighed heavily on my heart.

As I prayed more about all of this, I sensed God showing me that He saw the impact of all that. He is always glad to be with us and treats our weaknesses tenderly. With all of these major life events going on in our extended family in recent months, I realized I really need to create some space for what matters most. To do that, I needed to be willing to put a personal goal on hold, and trust God with this decision and the eventual outcome.

When I shared this decision with a friend, she commented that in Psalm 46:10, “Cease striving and know that I am God,” the language means to release something, to let go and to relax. In releasing this desire to God, I felt such genuine peace. I slept better. I felt able to be more emotionally present again. Offering love and practical support to loved ones began to feel natural again. My own health benefited from this letting go as well. Living with multiple sclerosis is more challenging than I often acknowledge. I try to live in light of eternity, but being realistic about my limitations and my own needs helps.

Sometimes a goal or focus takes on a life of its own, and we begin to work with singular focus towards reaching that goal. But as it says in Ecclesiastes 4:6, “One hand full of rest is better than two fists full of labor and striving after the wind.” Christ calls us to learn the unforced rhythms of grace as we yoke up with Him and find our burdens lighter because of His power and strength.

When God calls us to do something, we apply ourselves and put our heart into this task. Yet, when God leads me to let go of that same goal or task (even for a time or season), I want to obey without hesitation. When love motivates me to set something aside, I can trust God’s timing, His heart and His leading.

 

Meaningful, Enduring Relationships

beinspiredThis morning I read a very heartwarming email from my dear friend in Japan. Tomoko and I were college roommates at Pacific University several decades ago. The two of us forged a lasting bond in the months that we lived in a dorm room in Walter Hall.

A few years ago, she and our friend Keiko and I had a reunion in Portland, Oregon at her former host mother’s place. Bev lives in a very lovely neighborhood of gracious older homes, and the four of us had such a marvelous visit. We had wonderful long conversations, lots of laughter, and we went out for some delicious meals together. We also cooked frittatas, and made Dutch baby pancakes with fresh blackberries. As we listened to Keiko playing the piano, the melody of our memories transported us across the years. We visited the Farmer’s Market at PSU. Bev took us back to Pacific University where we had first become close friends. We remembered joyful times, and supported one another as we recalled tough times. During these days together, we shared our hearts, our tears and our lives.

I feel so blessed to have these women in my life. Having met Tomoko when at 19 or so, we really didn’t know what was ahead for us. She remembers me bringing her an avocado as a gift, which she loved. I told her years later that meant I really valued her friendship, because I love avocadoes! I had a few roommates from Japan my second year at Pacific, and I had so much fun helping them learn English. In fact, I thought to myself if I weren’t going to be a Physical Therapist, I would enjoy teaching ESL. I took them home to my family’s dairy farm. They loved my Mom’s delicious farm cooking.

When the time came for Tomoko to return to Japan, I missed her. She loved Oregon and we kept in touch. Some years later, she brought her husband to visit me. At Pacific, I spent a lot of time with Asians. On my wing in Walter Hall, we had a large contingent of Hawaiian women. Many of them were of Japanese descent. My roommate my first year of college was a Hawaiian of Asian descent, and Cathy taught me a lot of pidgin.

My Mom wasn’t too happy about the slang I learned at college when this English major came home speaking Hawaiian pidgin English with my friends. But Mom also really enjoyed the friends I made. Thankfully, I didn’t forget how to write or speak proper English!

God knew that in those years at Pacific, He had a clear purpose for these relationships. I planned to be a Physical Therapist, and I took all of the challenging science classes needed to enter that program. I did an honors project on Therapeutic Horseback Riding for Individuals with Cerebral Palsy. As part of my research, I spent time in British Columbia doing an Externship at an amazing place for riders with all sorts of disabilities. I watched in amazement as a young woman jumped a challenging course on a horse despite being blind.

I eventually got accepted in the Physical Therapy Program at Pacific, and loved learning about this field. Sadly, some health challenges interrupted my studies, and I had to leave the program feeling lost and devastated.

However, God kept reminding me of my love for people of other cultures, and right at that time He planted within me a desire that just wouldn’t leave. I felt inspired to go and teach in China, and despite precarious health, that is exactly what I did a few years later. Had I known that I would eventually be diagnosed with multiple sclerosis, the organization probably wouldn’t have sent me. But by His grace, I didn’t know yet what the source of my intermittent health challenges actually was. I just knew that life would get really difficult at times, and the various symptoms would interfere with daily life a lot. So, I took the risk and those two years in China transformed my life. I discovered my love for teaching, and I found renewed purpose for my life. I taught English to medical students, and to this day the friends I made are so precious to me.

Now, as I look back, I see God’s hand guiding me through all of those years. Tomoko and Yumiko (another roommate at Pacific) were the first of many Asian friends who would bring joy to my life. I loved teaching in China, and made many lasting friendships. Just last year, I spent time with several of those dear friends when I returned to China for about three weeks.

After I finished my two years of teaching in China, I returned to Oregon, and I spent some years teaching international students from all over the world. I opened my home to these students, and often rented out rooms to people from various places. Genevieve, from Belgium, brought a lot of joy to my life when she rented a room in this house I had built on an acre. I also hosted a number of Japanese students. During those years, friends and students from Sweden, Japan, China, Taiwan, Belgium, Korea, Brazil, Panama, and Russia enjoyed spending time with me. I still have a network of friends around the world from those years.

When I think about how much friendships with students and others from all over the world have enriched my life, I feel so blessed. I am a writer and we hear a lot about building a platform. Traditional publishers require evidence of connections that might prove very valuable when marketing a book. So, we are taught strategies to build a network and establish a platform.

While I understand this need, and do whatever I can to continue making connections with others to create an email list, I smile when I think of the actual network of friends I enjoy. My years as an ESL teacher and later as a counselor provided me many opportunities to build deep, meaningful relationships with a large variety of people.

Even when health led me to stop working full-time, I developed trainings for professionals and offered counseling to others part-time. During seasons when I had to stop working altogether, I had the gift of time to cultivate relationships with many people in my area, and to stay in touch with friends far away. I believe one reason we are alive is to know others and to encourage and strengthen them. So, I have lasting friendships.

When I met my husband early in 2012, we took time to get to know each other well before we got married. When we got married about four and a half years ago, Trinity Covenant Church was filled to capacity with hundreds of friends who shared in our joy. I wouldn’t trade these real-life friendships for anything.

I love Psalm 37:3-5 which says, “Trust in the LORD, and do good; dwell in the land and cultivate faithfulness. Delight yourself in the LORD; and He will give you the desires of your heart. Commit your way to the LORD, trust also in Him and He will do it.”

Years ago, I had the desire to learn to relate to others well. I wanted to have meaningful relationships with people from many cultures. I also hoped to have my own family someday. How faithful God has been to fulfill these desires in such vivid, transformative ways.

 

 

 

 

A Broken System

Earlier this week, the specialist I see for MS and I had a brief dialogue via the patient portal. In earlier conversations, she had encouraged me as I considered changing primary care doctors to the clinic where she works. This would be closer and simplify care. She also knew that the clinic where I have been receiving primary care has been increasingly disappointing. (The quality of care has changed a lot over the past couple of years and they are in the midst of some major changes which will compound the deficiencies in care.) When I inquired about transferring my primary care earlier, I was told which doctors were taking new patients, and that it would be fairly easy to make this change. I had felt hopeful and encouraged.

That was until I actually asked again a few days ago about transferring my care, and then I encountered a brick wall. “We are not taking any new patients with your insurance.” Not at all? I asked politely. “No, not at all.”  While I understand the reasons, I felt very disappointed. When I mentioned this to the neurologist, she said she was very sorry that I encountered barriers due to my insurance and she explained why that is happening. Reimbursement is so poor that smaller clinics would struggle to keep their doors open if they accept too many patients with this very common insurance. She is an excellent doctor and I am very thankful that she accepted me as a patient awhile back. But many doctors will not. Thousands of Americans are in this same situation.

This doctor commented on our broken system and I have great empathy for her and many other caring medical professionals trying to work in this system. I also have great compassion for the multitudes of patients whose care is increasingly compromised by a system which discriminates against them by virtue of the insurance they have. If you have care, be thankful. If you long for days when the quality of care was better, I guess you had better be proactive in taking really good care of your own health because things are likely to get worse. Our medical system in this country is essentially a train wreck waiting to happen, and more trains are going off the rails.

Although they would never call it that, the reality is that rationing of care is also taking place. My primary care doctor spent most of my “Wellness Visit” explaining why she no longer needs to monitor many aspects of my health. Bloodwork that she used to consider essential is “no longer needed.” I am learning from friends who work in the medical field that this is increasingly common. If you want good health care, and you happen to have insurance which does not have fair reimbursement rates, you suddenly don’t need tests unless they are larger sources of income for the clinic. I’m not talking about wasteful tests, but ones which give essential information which can help inform treatment decisions.

When you go to the lab for some necessary bloodwork, the clinic has a computer program which will flag every test that the insurance isn’t likely to cover. So you can decline the test, or you can sign a paper saying you’ll foot the bill yourself. Even though the test I needed was because of months of bloodwork being outside of normal range (possibly due to the MS medication), I had to sign a paper saying that I’d pay for the test if and when my insurance declined. Most likely we will be gouged again. Health care premiums continue to go up each year, and the covered services seem to decrease even more rapidly.

Also, quite often now scheduling is done in a way that requires you to see the provider with the least amount of training rather than your primary care doctor. Nothing against these providers, but complex situations might be better addressed by someone with more training who knows your medical history already.  So, thankfully I take good care of my health as much as I possibly can, and I have a good naturopath who assists me now and then (and my insurance doesn’t cover him at all). But I am deeply concerned about the impact of these issues for all of us. I have seen poor medical care harm loved ones. Many people think that socialized medicine is the answer. Actually I believe it is not the answer but often the source of many of the problems we are facing already. Reducing care to the lowest common denominator will cost lives, and this is already impacting the system adversely.

Insurance companies, even large mainstream carriers, and clinic administrators are making decisions about what health care is offered to people. Sometimes entire clinics or specialty areas are being closed or no longer covered by insurance companies. It doesn’t matter that lives hang in the balance when these conditions go untreated. Dollars seem to be the only bottom line, while ethics and the call to do no harm get ignored.

The dollars and insurance companies are calling the shots, and doctors who want to provide quality care are increasingly frustrated. Some are leaving the field or offering cash only services. I have great compassion for the doctors who have to try to operate in this messed up system. Their stress levels go up as they contend with administrative policies they know harm patient care. Patients with chronic conditions and people who have diseases are viewed and treated differently than they might have been before our system became so broken. I felt a bit like I had a scarlet letter on my forehead as the receptionists all looked at me as the front desk worker explained I would likely never be able to receive help from a primary care doctor in their clinic. Rejected. Not worth helping because of the insurance I have. (Thankfully my identity is found in Christ, not in this sort of thing but this conversation felt very heartless.)

I watched a movie called Living Proof (on Amazon) recently. The man who made the film has Multiple Sclerosis. He shared a story that highlights the broken system and money-oriented power structures that dominate the scene. He shared how his father (a scientist) researched diet and lifestyle changes that could help him battle this insidious disease. His mother is a nurse. When they tried to share this valuable information with the MS organization in Canada, he learned how influential big pharmaceutical companies had become. When someone has MS, if they receive one of  the mainstream MS treatments, the potential income for pharmaceutical companies over the years is a staggeringly high dollar amount. Many of the medications cost many times more than the person with MS lives on per year. Thousands and thousands of dollars are made, and the Canadian MS organization is in the pocket of Big Pharma.

The movie also has an interview with a doctor who performed a procedure that has helped many MS patients. He was stopped from offering this procedure despite the benefit it had for many of those he helped. This sinister and tragic change happened because what he offered threatened the large profits made from other more “accepted” treatments, so they pressured him to stop.

When this man with MS who made this movie created a website to help others with MS learn some natural and lifestyle approaches that might help them, too, the Canadian MS organization issued him a legal order to cease and desist. They saw offering this information as a threat. Thankfully, this man had the courage to find a way to continue sharing the information. But the movie made me think more deeply about this very corrupt system which profits greatly from taking only a western medical approach to treating this disease. My husband and I didn’t sleep so well after watching the video. The truth about what is happening in health care is disturbing on so many levels.

I often try to write about encouraging things. This blog post may not be very joyful to read. I would apologize for that, but I cannot. Some of the information in this post may be controversial. If it disturbs you, it is because our health care system needs help. Many of us may encounter “health-don’t-care” rather than the quality of care we once had. I’m going to choose to be grateful for the courageous health care professionals who continue to find ways to offer quality care. Some of them do this at great personal sacrifice. (I have great empathy for doctors and other providers trying to do their jobs in an increasingly hostile environment. Health care is compromised when the doctors are hindered from doing the right thing for the patient by systems that call the shots.)

I’ll trust God to help with the rest of this, and I’ll persevere. But I might also take a careful look at whether I am simply a cash cow to the pharmaceutical industry by virtue of having MS, or whether these treatments continue to best serve my own health. Maybe God is allowing me to see and experience the disappointing realities that so many of us are encountering as we try to get basic help with our health for a reason. Maybe I can be a voice crying for reform in the wilderness of diminished care. Since economics drive most of this, not patient-centered values, I know I need to pray for others like me who are finding it harder and harder to navigate basic care needs. Even more, I want to pray for the courageous doctors and professionals who endeavor to offer quality care in a system that actually punishes them for doing the right thing at times. Thankfully my faith is in God, not in our broken system of health care which is hurting doctors and patients alike.

 

 

 

 

 

 

 

 

 

Miracles Come in Many Forms

Miracles come in many forms. I always used to say it would be a miracle if I ever got married. It’s not that I hadn’t had opportunities, but I used to wonder why anyone would choose “this,” to share my life which also involves living with a neurological disease that can make life pretty challenging.

I don’t have time to share this whole story today, but on a trip to China in 2011, which I’d wanted to make for 17 years, I spent some deep time in prayer near a beautiful river surrounded by karst peaks. In response to the cry of my heart, God assured my spirit that He would never withhold even an ounce of His love from me. Then I felt led to ask, “What else (besides this trip) might be possible that I’ve written off?” And I asked for a husband. God gave me a verse that directly spoke to that desire, and I felt this uncanny assurance that He would send me a man to share my life with. I returned home that fall with a strange peace that God had answered that prayer, and by January I met the man who is now my husband.

heat and the radius of my life today

Heat and MS aren’t very compatible.  So I need to stay in on hot days like this one.   Miles came and pressure washed the driveway, and this strong high school student accomplished a lot despite the heat.   I marvel that God has given him and others health and this kind of capacity physically.  It’s been a long time since I could accomplish much on a hot day.   Long ago, I felt restless at the necessity of staying inside in hot weather.  Instead, today I felt a sense of anticipation, hoping that this block of time might allow me to continue making some progress on some writing I have been doing.   A friend called and asked a question about grief, and what it meant when a woman prayed that they would ‘grieve fully.’   We had a good discussion about the nature of grief and things close to my friend’s heart today.  We prayed for one another and I felt very thankful that God has prepared me to be able to minister to women and others who are hurting, both through my education and experiences.  He is a Redeemer and loves each of us so tenderly.  Sometimes God uses a phone call to confirm some direction or a need which He might like to address partly through things I can write about.  I shared my recent intro with her about how Jesus ministers to us in those places of loss and grief, and what the Word says about grief.  I pray God will use my writing to encourage and comfort her.

Sometimes living with limitations can be frustrating, and I look to God to help me. Lately God has confirmed that I can persevere by His power and grace, and that He desires me to run this race with endurance.   How quickly I accomplish something isn’t the issue…only that I offer my efforts up as a sacrificial praise offering to Him.   You see, I can’t do this without Him.  I wouldn’t even try.  But I believe I can do all things through Christ who strengthens me, and I believe He desires to redeem the things I’ve experienced for His glory.   So, I will press on and trust Him with the timing and outcome.

Hope Shines

This morning I awoke knowing I had some medical tests to endure on a hot summer day.  Of course, I hoped the results would be that the multiple sclerosis is stable and there weren’t any new active lesions in the brain or spine, but I didn’t know what the outcome would be.  This morning I had an MRI of my brain and c-spine, which took about two hours, and I hadn’t expected to receive the results before the end of the day.  So when I saw the portal message from my neurologist about test results, I felt eager to see what the powerful new MRI machine would reveal.  Surprisingly, the report was completed and my doctor already sent me the good news–no new lesions apparently and no active lesions, and another matter noticed previously had not changed, so that also was encouraging news.   We can continue with the current treatment because it is doing just what we hoped it would.   Sometimes the things we hope for in this life come to fruition.  Sometimes they don’t.  But genuine hope shines even in the midst of adversity or challenging health.  Yes, hope shines.  Thank You, Heavenly Father, for a hope that transcends all this stuff we encounter in a fallen world.  And, thank You for encouraging news in this journey with health this side of eternity.  One day disease will no longer impact anything, and MRI’s won’t be necessary, one day in Your Presence where beauty and wonder will captivate our hearts.

Hope in action

Ever since 1994 when I left China, so sad that health made long-term work there too difficult, I have wanted to return.  That summer, I came home with two suitcases, wishing life could always remain so uncluttered (and simple) and that my sense of purpose could remain so clear.  I still remember the joy I discovered when I first arrived in China.  I found out that teaching full-time was a tremendous joy for me.  I loved the students, and they loved me in a very pure way.  I don’t think I’d ever known such joy before life in Nanchang.  Perhaps in some ways joy was inspired by a new adventure, but my love for the people of China and teaching has never dimmed.    I loved living in a place far from home, a place where I was known simply for who I was and the gifts God had given me.

Sure, I missed home in some ways.  Just the crush of the crowds when I’d leave the north campus would give me a headache at first.  Crossing the street required excellent reflexes and courage in this wild traffic.  But I’d never felt such a sense of belonging and peace as I felt there on the campus of Jiangxi Medical College.  My students were bright and eager–and many of them came to the city from the countryside.    Many of them had little in the way of material resources.   Once I talked about how Americans love desserts and foods that are not so healthy–in fact those foods might just make a person fat.   Many of them were so thin their belts literally reached around a few times.  One very thin fellow raised his hand and wistfully said, “Miss Susan, I would love to be fat just once.”  Some of the girls told me that on their birthday, they would buy an egg or two to add to their noodles as a special celebration.  One of them wrote me a letter saying she hoped I’d have “something special for my dishes.”  For entrance exams, one farm family saved diligently  to provide their daughter with milk, fresh fruit and some more protein so she could study better.  She always remembered their sacrifice.  This same girl touched my heart when she told of planting rice with leaches stuck to her legs, and then she smiled and said, “it wasn’t so bad.”  On Thanksgiving, I asked my students what they were thankful for, and a young man held up his ballpoint pen.  “My pen,” he proudly said, “I’m thankful for this pen–it’s been a good one.”  Many times I fought back tears of admiration and love as I heard them express their hearts.  Those same hearts held such beautiful appreciation and promise…and I quickly grew to love my students and colleagues.   So naturally, I was heartbroken when I left for home, not yet knowing that multiple sclerosis was causing the problems, though it had been suspected earlier.

Today something magical happened by God’s grace.  I have saved air miles for several years.  I have hoped for adequate health to travel so far again, and seldom has it looked feasible.  But today, I felt excitement and great hope when I called to book a ticket to China.  At last, I’ll set foot on Chinese soil again.  I’ll see dear friends in Hong Kong, south China, and central China.  For $300 and some patience, I was able to purchase the remaining air miles needed, pay the taxes, and the wonderful rewards desk woman helped me for a good long while as we searched for a ticket I could reserve.  I prayed it would happen, and somehow I knew it would.  Guess what, I am going back to the land I love!  I thought it would be fun to share the journey through this blog…and recount some of the memories formed long ago in a time I treasured.