Category: disease

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Thoughts on Easter 2020

The Easter season was a bit different this year. Instead of gathering in person with our brothers and sisters to celebrate the resurrection of Jesus, we gathered around our computer for a livestream service via Zoom. In stead of greeting dear friends with a hug, we waved to the images on the screen. Instead of getting together with friends or family for a feast, we had an Easter dinner for two in our dining room. It was a very good day, and I am grateful for what we were able to do, but it was different, in a strange way.

The coronavirus pandemic, which has devastated much of the world, has changed the way we do just about everything. Many people have been at home for a number of weeks, as “shelter in place” becomes the norm. The great majority of churches have closed their doors, either meeting on line, watching services on television, or not meeting at all. Businesses have been forced to close, and social distancing has forced upon us a new way of relating with each other.

Jan and I found some positive things coming out of an Easter weekend during time of quarantine. We gathered on line with friends Thursday for an altered Seder, followed by an online Maundy Thursday service. Friday evening we watched a Tenebrae service online, and Saturday found us experiencing an Anglican Easter vigil on line. Even though we didn’t do the things we normally do this time of year, we were able to experience a little of the breadth of the the Christian tradition’s celebration of the resurrection.

As the pandemic continues, many of the things we have taken for granted will have to be abandoned or revamped. The ways we work, shop, relate to others, and do church may look totally different in the days ahead. I think that will turn out to be a good thing. There are things that we need to change as individuals, families, churches, nations. As we come to grips with what is really important in our lives, we can become more understanding people, who treat each other as persons made in the image of God. As we learn to work together, we can become more unified. Maybe we can conduct our public lives with an eye toward what is best for all, rather than for our side of the aisle. As churches are forced out of the routine, maybe we can rediscover that the church is not the four walls, but is the family of God who are called to love and serve our neighbors.

Easter is all about hope. The hope that all will be made right, and we will be resurrected. In the midst of tragedy and hopelessness, we can know that Jesus defeated death. Because he walked out of that tomb, nothing will stand in the way of our Father’s plans to restore his creation. Nothing can change that. As the apostle Paul wrote, “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

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Musings From the Past Few Days

Last Wednesday, my life changed. That afternoon I experienced what someone my age hopes will never happen. My heart decided I needed to take a little trip to the emergency room. After arriving by ambulance and having a couple of EKGs done, the cardiologist on duty decided that it was time for me to go to the emergency heart cath room. While there, the doctor found that the artery in back of my heart was 95% blocked and a stent needed to be inserted. While this was happening, my heart tried to make things even more difficult. Fortunately it calmed down and the procedure was completed. After resting in the hospital for a couple days, I was able to go home on Saturday. I am feeling much better and getting anxious to start rehab and get back to some semblance of normal, although I know that the definition of normal will be different.

Between my adventure and all that is going on around the world with the COVID19 virus, I have had some time to think. One thing that something like a heart attack or pandemic will do is cause us to come to grips with what really is important.We chase around trying to find significance in so many different things and we many times forget what really counts. The current virus has pretty much brought the world to a standstill. Almost all sporting events have been cancelled, and the Olympics are in danger of not happening this summer. Restaurants, theaters, even churches are shuttered in an attempt to flatten out the curve and get ahead of this. It is likely that folks will begin to lose jobs, and there is the very real threat of a global recession. There is a great deal of fear as the unknown looms.

All of the dislocation and hardship that folks have gone through or will go through is hard and I don’t want to downplay or minimize their suffering. I grieve with those who are grieving the loss of opportunities, jobs, or especially the loss of loved ones. I am not suggesting that my thoughts are the answer for anyone else. The recent events in my own life and the “new normal” Jan and I are already dealing with, have led me to do a lot of taking stock, trying to determine what is really vital.

First, my relationship with God is the most important thing. Without that, there is nothing else. Loving God with every fiber of my being is the one thing. Next after that comes loving Jan as Jesus loved the church, giving myself for her. Then comes loving my children and their families and being a good grandad. Beyond that comes loving my brothers and sisters in Christ, especially those I am in community with, as Jesus loved me. Then there is loving my neighbor as myself. Regardless of what else may happen in the days and years ahead, if I can do those things I will consider myself to have done well.

Have you thought about these things? What do you consider to be most important?

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A New Year

Today we enter into a new year. Not only a new year, but also a new decade. Yes, I know that technically the new decade begins next January. But it is the 20s now, so I’m going with calling this a new decade.

I’ve seen a lot of talk about reviewing the past decade, ten year plans, etc. I think it’s a good idea to look back over the last few years and see the changes that have occurred in our individual lives, in our families, and in our world. As I look back over the time since 2010, I can think of a number of things that are different as I enter 2020.

Ten years ago, Jan and I were parents of two unmarried young adults. Now we have added a daughter-in-law, a son-in-law, and three grandchildren. In 2010 I was working as a teacher’s assistant and Jan was working at an assistant living facility. As this decade begins, I am a driver at a retirement community and Jan is semi-retired and tutoring. During this time we have lost Jan’s father and oldest sister.

Ten years ago, we were helping plant a church that met in a bagel shop. In the past ten years the church plant ceased to be and we are now part of a small Presbyterian church that seeks to serve our city. Since 2010, I have lost about 25 pounds and been able to keep it off. My hair has become grayer, and my joints creakier. When the last decade began, we had never heard of Huntington’s Disease. As the new decade begins, we are dealing with the reality of Jan having HD, and all of what that means.

As I look back on the last ten years, I see some happy times and some sad times. I see times of accomplishment and times where I wonder what in the world I was thinking. Sometimes life seemed relatively normal and sometimes it seemed like a long, strange trip. There were times when my faith was strong and there were times when my usual prayer was, “Lord I believe, help my unbelief.”

As I look ahead to the 20s, I don’t know if they will be roaring or calm. I am not even going to attempt a ten year plan and my crystal ball shattered long, long ago. The only thing I do know (and have to constantly remind myself of) is that my Father in heaven loves me and my family with a furious, inexhaustible love and will bring everything about for my good and his glory.

Check back in another ten years. Maybe.

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Hurry Up and Wait

“Hurry up and wait” is a phrase that some who have served in the military my be familiar with. It is also a phrase that describes something that those who have Huntington’s Disease or care for someone who has it have to keep in mind in their day-to-day.

When Jan and I went to the Huntington’s symposium last year, one of the speakers told a story of speaking with a man with HD. He would ask a question and the man wouldn’t answer right away, so the speaker would ask him a further question to clarify. The man again wouldn’t answer right away. After a few minutes of this, the speaker asked the man if he was getting frustrated and the man told him that he indeed was getting very frustrated. The man said that the speaker kept setting his clock back. When asked what he meant the man described his thinking process as a hand on the clock. As he tried to process each question, the hand was moving from twelve o’clock toward six o’clock. Each time the speaker asked him another question, the hand was interrupted in its movement and had to reset back to twelve o’clock.

Hurry up and wait is one of those aspects of the new normal for those affected by HD. The processing of questions, ideas, etc. is slowed down. As the disease progresses, the person may lose a great deal of the ability to carry on conversations because of the length of time needed to process. This can lead to frustration for the one who has HD, the ones who are caretakers, and friends and other family members. Hence the reminder to hurry up and wait. Patience is needed by all involved. Those with HD can be just as frustrated, if not more so, than others around them.

As we journey together through this new normal, we are having to learn to be patient. I am learning that the answers will come if I am patient enough to wait. Jan is learning to be patient with me when I just think about the “hurry up” part of the phrase. Even though it is not easy, I think it has given me a greater appreciation of Jan as my wife and as a human being with worth, regardless of whether or not she comes up with a quick response.

I would appreciate your prayers as we journey down this back road together.

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Getting Personal

May is Huntington’s Disease Awareness month. This month is significant to our family. Last summer, my wife Jan was diagnosed with HD. Later, we found out that both of our children and one of Jan’s sisters also have it.

HD is a genetic, fatal neurological disease for which there is no cure. Yet. If you want to find out more about it you can go to https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/?

As you can probably guess, the diagnosis of a disease such as this has changed our lives. After all, since there is no cure, it will end in death. There is currently no treatment for the disease, only for the symptoms. As the disease progresses, there will be issues with memory and processing, problems with balance and movement and issues with speech and swallowing. Death is often caused by pneumonia, heart failure, choking or other complications. Depending on when the symptoms appear, the course can run from ten to twenty five years.

There are varying degrees of HD. How severe the disease will be depends on the number of “repeats” in a particular gene. The lower the number, the shorter and less severe. The threshold number is 40. That is Jan’s number. The folks with the higher numbers usually show symptoms between the ages of 30 and 50.

We are in a season of trying to settle into a new normal, with only a limited idea of what the future will look like. We know that we have to trust that our loving Father has us in his hands, and that he will be with us through whatever may come. There will be days ahead when Jan will not be able to do many of the things she once did, and there will be times of frustration and wondering.

Our children also face the unknown, but there is encouraging news for them. A number of clinical trials are showing promise, and there is a possibility of a future treatment that could effectively cure HD. We hope and pray that medical science is able to accomplish this soon.

We would appreciated your thoughts and prayers for us as we travel down this back road together.

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Sad, Angry, and Hopeful

Today, I lied to one of my bus passengers. She told me she had been diagnosed with ALS and asked me if I knew anything about it. After stating a couple of generalities, I told her that I couldn’t think of anything else because I didn’t want to be the one to tell her that the disease is fatal. Two days ago, our next door neighbor died from pancreatic cancer, just a few days after coming home from the hospital. A week and a half ago, friends of ours lost their twenty one year old only son in a tragic accident. I see and hear of families and friendships being torn asunder because of pride and selfishness.

I am saddened by all these things. It is heartbreaking to see parents grieving a son that is supposed to outlive them. It grieves me to know that I will no longer speak to my neighbor across the fence between our houses. I am sad to hear of someone contracting a deadly disease. My heart aches to see relationships broken and people I know in pain.

I am angry because none of these things are the way it is supposed to be, the way creation was made to be. I am angry at evil, at sin, at the things that happen to us, and at the things we do to each other. I am angry because I feel helpless much of the time, knowing that so much is out of my control.

I am sad and I am angry. Yet, at the same time I am hopeful. I believe that the Creator of the universe has stepped into this world, taking on humanity. Entering death, on the cross, the King came through the other side and defeated death. His kingdom was inaugurated through this death and has been coming to fruition in small ways ever since. This King will return and set all things to right. I don’t understand everything that happens in this life and there are many things I don’t like. But, I do believe that one day there will be no cancer, no ALS, no death. I believe that all broken relationships will be reconciled and there will be wholeness and peace.

Even so come, Lord Jesus!

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How Long?

This is a poem I wrote recently.

How long?
How long must parents mourn the death of children
Disease, hunger, war, or their own hand?
How long must children watch parents waste away?
Disease, dementia, or simply age
How long must families, friendships, communities be torn apart?
Selfishness and sin
How long must people and nations be destroyed?
Hatred and war
How long must the land be devastated?
Floods, tornadoes, hurricanes
How long must the earth groan?
Belching fire and tearing violently asunder
Creation is broken. It is not supposed to be this way
How long?
How long must we wait
Reunion with loved ones?
How long must we wait
Relationships set right?
How long must we wait?
Creation set right
How long must we wait?
Disease, pain, death ended
How long must we wait?
Anticipating your return
How long must we wait?
Resurrection and the death of death
We long for the way it is supposed to be

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Without Defect

In Leviticus 21, the Israelites are given the instructions that any of the descendants of Aaron who had any defect at all, even something as minor as a broken bone, could not offer any gifts or sacrifices to God. I don’t know about you, but if that passage was all I had to go by, I’d feel pretty hopeless. Seeing as how I’ve had a few broken bones, including a little toe that is still crooked, I wouldn’t come close to being able to come into God’s presence.

When you think about it, none of us are qualified to give anything to God. We are all born with a serious defect that we can’t get rid of. That defect, sin, is far worse than a broken bone. A broken leg can possibly heal on its own, but we can do nothing to heal our sin. So, we are up the proverbial creek without a paddle or even a canoe.

There is also the problem of not making the grade as far as how others see us. We spend our entire lives trying to measure up, to parents, friends, spouses, employers, or any number of people in our lives. Many times we fail. We are seen as defective, unworthy. But we keep trying because we want to be be accepted, we want to be loved. That is true whether we are talking about people or about God.

Fortunately, there is someone who has no defect, who is absolutely sinless and perfect. Because Jesus took our sin on him and has taken it away, his acceptability is now ours. We can now approach the Creator of the universe with boldness, knowing that he sees us as he sees Jesus, as spotless. That also means that we are not bound by attempting to appear as if we have it all together. Ultimately it doesn’t matter what others think of us because God himself calls us his beloved children. If we are without defect in the eyes of God, wouldn’t it be a a good idea to live in that knowledge and stop trying to prove ourselves worthy. We have nothing to prove, nothing to do to make ourselves worthy.

That has already been done. Believe it. Live it.