Grandchildren

It’s funny…now that this incredible thing has happened, it is almost all I think about. How amazing, I think…certainly the most beautiful and wonderful thing that has happened to me. And yet it is not unique. It happens every day, hundreds of times, to so many different people. But if that is so, why isn’t the birth of every new and precious little one all anyone ever wants to talk about? Why isn’t everyone talking about this everywhere you go?     -Andrew after the birth of Henry

There is something about having a child--you are met head on with an amazing miracle. And it happens all over again when you have a grandchild. Each birth is a celebration of life but this is one more time God has graciously allowed you to have something to do with it. You are given the privilege to witness a little piece of you going on two generations later.

With your own children there is the opportunity and burden of great responsibility—not to mention sleepless nights and countless anxious moments. However, with grandchildren it is sheer enjoyment. Hopefully by now you have accumulated wisdom and experience and show more grace to your grandchildren than you did to your own children. And like we all do they need that kind of unconditional love.

My Big Relapse

Last year at this time I was optimistic about my apparent recovery from fibromyalgia. I thought that a medication I had been taking was the source of my fibromyalgia symptoms because when I had to discontinue it, I felt much better. I explain this in my blogs:  http://brokenbutbeloved.blogspot.com/2008/09/surmontil-shortage.html and http://brokenbutbeloved.blogspot.com/2009/01/fibromyalgia-is-gone.html

However, I ran into a roadblock last July (around the time of the hailstorm) when out of the blue came a major relapse. Something must have triggered it but it was so sudden and unexpected. Perhaps I pushed a little too hard with my lap swimming. Anyway, it sent me crashing over the edge and wham; I was hit hard with all the old symptoms; crushing overwhelming fatigue, malaise, pain and brain fog. I went from being fairly active everyday to feeling too ill to do anything. Although I still thought it was a good thing that I was forcibly weaned from Surmontil, I had to admit that I had a peculiar health problem. I lacked energy to do anything but the most fundamental activities. For the last part of July I spent two weeks doing as little as possible and with rest and careful pacing I gradually built myself back up to a tolerable level.

It was during this time that I discovered the term post-exertional malaise. http://brokenbutbeloved.blogspot.com/2009/07/post-exertional-malaise.html All along this had been the symptom that baffled and plagued me most yet I didn’t have a name for it. It was very frustrating trying to explain this phenomenon to others. No one seemed to get it. Even my various doctors failed to understand. It is the symptom that is aligned with CFS rather than fibromyalgia.

It became clear to me that I had been misdiagnosed. Fibromyalgia and Chronic Fatigue Syndrome are closely related but my symptoms definitely fall in line with CFS rather than Fibromyalgia. I felt frustrated that my doctor failed to recognize that. But from this point on I embarked on learning everything I could about CFS.

Activities for August were already planned and it was too late to change them. Blind optimism and a bit of denial persuaded me that I would be able to handle everything with ease. Sarah and Henry were to fly from Massachusetts to visit us for ten days and I had been looking forward to that very much. We invited Kim’s parents from Illinois as well so Sarah could visit with them and they could enjoy their great-grandson. The family time was great and it was especially precious to spend time with my grandson. But the effort to be a good hostess was excruciatingly difficult. On top of that I had a trip planned to Scandinavia for the latter part of August. I love travel and was very excited about that trip. On the outside everything went well but on the inside I really struggled. I was in pain the entire time.

When I returned from the trip I collapsed. It took three months to return to a reasonable level of function and three more months until I felt “normal.” During the hardest times I felt forced to step off the road of life and hide like a wounded animal.

What really helped me during this time are my ‘internet doctors’ who gave me hope and a means to cope. There are two that stand out. Nadine Sauber’s colorful blog http://healthosity.blogspot.com/ gives me information about diet and other aspects of recovering from CFS.  Bruce Campbell’s blog http://www.recoveryfromcfs.org/ and Fibromyalgia/Chronic Fatigue Syndrome Self-Help program http://www.cfidsselfhelp.org/ has taught me the supreme importance of pacing. Not only do they give me a lot of information and guidance but they also encourage me when they remind me that I’m not alone with this condition.

I have learned that I cannot rely on traditional medicine to help me. Maybe there are some medical doctors out there who understand and know what to do for patients such as myself but I despair of ever finding one. I have had too many bad experiences and it is simply too expensive to keep looking. Doctors either prescribe medication or do surgery. Obviously there is no need for surgery for CFS and drugs only seem to make the condition worse. Recovery for some chronic health problems such as CFS must be done by the patient—basically taking super good care of oneself. This is summarized in Nadine Sauber’s healing formula: Real whole food alkaline diet + restorative sleep + elimination of toxins and stressors + being positive and hopeful + regular graded exercise and pacing + consistency + time. I would add ‘relaxation techniques’ such as meditation, progressive muscle relaxation, biofeedback and breathing techniques.

With strict adherence to this formula one can recover from Chronic Fatigue Syndrome. Although my healing isn't complete, I have come a long way and I have read about others who have had substantial recovery.  Many people are lucky enough to be healthy by default. Others of us have to learn or relearn what good health is all about. Most doctors don’t do education and that is what CFS sufferers (provided they don't have another medical condition) need most.

Hail Storm

A neighbor's house the morning following the hail storm.

An exciting storm came through last Monday night. I woke up at midnight to flashes of light from the north window of the bedroom. As I heard no thunder I assumed the distant storm would soon pass to the east. Meanwhile I enjoyed the fireworks and soon drifted back to sleep. It seemed like seconds later that a howling wind arose and hail pounded the house. A chill invaded the previously hot summer air. Water streamed through the windows as they banged and shook and James and I raced around to close them. The flashes of lightening now enveloped us and seemed to occur every two seconds as they revealed a wintry looking landscape. I have lived in Colorado over twenty years and I have never experienced a hail storm that was so loud—and long—a good twenty minutes. Fortunately we were privileged to experience the thrill with little damage; a few decimated flowers and shredded shrubs. Later I heard the news that suburbs near Denver suffered smashed windows and the crushing of houses and cars by huge trees.

Post Exertional Malaise

Every time I exercise I pay. Most people feel good after they exercise—they’re invigorated…but not me. I feel worse. This challenges my motivation but I persist because I really want to get back to doing the outdoor things I love.

Since my forced discontinuation of Surmontil last fall (it is no longer manufactured) and the cessation of most of my fibromyalgia symptoms, I am not home free yet. Surmontil did keep my insomnia at bay and without it my sleep problems are back. And the one fibromyalgia symptom that did not go away is the mysterious post-exertional malaise. PEM is a period of intense, debilitating fatigue in reaction to seemingly harmless activity from which it takes an inordinate amount of time to recover. It is also known as exercise intolerance. I don’t have it all the time but I have recently experienced a particularly bad episode.

So between insomnia and occasional post-exertional malaise it is no wonder that I am tired all the time. I fear that in addition to my already reserved disposition my fatigue only makes me seem more aloof. Perhaps I should wear a button, “Please excuse me, I’m not a snob, I’m just very tired.”

However, in my constant quest for answers I have found hope. It comes from a book I’ve discovered, The Complete Idiot’s Guide to Fighting Fatigue by Nadine Saubers. The book describes exactly what I’m going through. It provides good, practical advice about pacing, graded exercise, and maintaining a healthy energy bank account.

Good health is such a glorious thing. For those who are blessed to have it, it is easy to take it for granted. Some of us have to fight for it but it is worth the battle.

Japan in me

A 95 year old man living in Tokyo recently asked me to contribute to a book he is writing. This is how it came about.

Four years ago I learned about the John Manjiro Whitfield Commemorative Center for International Exchange. It organizes trips for Japanese people to visit America and vice versa for the purpose of friendship and cultural exchange. On a given year a group of Americans travel to Japan and on the alternating year a group of Japanese travel to America. Volunteers on both sides provide activities and experiences for their guests as well as arrange for two to three day home visits. James had a lot of interest in Japanese culture at the time, partly motivated by his interest in Nintendo and Anime. To me it seemed like a wonderful opportunity for travel and a good educational experience for my son. We made the trip and loved it. Although I anticipated that James and I would be together for the homestay, we were not. At age 16, he stayed with Japanese strangers by himself. Although initially very anxious about it, he thoroughly enjoyed the experience.

On the following year, the host city for Japanese guests was Colorado Springs. Eager to return the hospitality shown to me, I volunteered to host Japanese visitors in our home. At first we were told that a 78 year old man would be staying with us. Then I received a request to also take in a man who would be traveling with our guest as an attendant. The 78 year old's physician (also his friend) insisted that he not travel alone and arranged for her husband to accompany him. When the time came to meet our guests, we discovered that the 78 year old was actually 92. We heard rumors that he feared being excluded from the trip if he admitted his actual age so he fibbed on his application!

We had a fascinating visit with this man. When he was younger he worked as a journalist for one of the large newspapers in Tokyo. During World War II, he covered a battle in Korea where the Japanese were overwhelmingly defeated. He was beaten for reporting the truth about that battle and is deaf in one ear from the injuries. In addition he also described interesting aspects of his childhood in Kyoto.

There was a shadow of sadness over his visit however. He was grieving the recent death of his wife. He wore her photo around his neck and would discuss the circumstances of her death with us.

Mr. Konno holds a photo of his recently deceased wife

The next year I went to Japan again with my friend Diane. We visited the Noto Peninsula on the western side of the country. It is an enchanting area of mountains, sea, and rural landscapes. We experienced the pleasure of staying in a ryokan. My homestay was in the quaint little town of Hakui City with a woman named Masago and her mother. Masago took me to see to the beautiful gardens in Kanazawa. She also took me on a hike up a mountainside of lush bamboo and pine to the site of the burial place of Moses. How did that story ever develop? Fascinating!

Masago gave me a kimono.



At the Moses Park

At the end of the trip we spent two days and one night in Tokyo before flying home. My former Japanese guests invited me to have dinner with them, the younger man's wife and three additional friends. The younger man came by the hotel next to the Tokyo Dome,a huge baseball stadium, in a taxi to pick me up. It was a bright early summer evening as we drove through the vibrant canyons of Ginza. After driving by the grounds of the Imperial Palace we stopped by one of Tokyo's newspaper buildings where we picked up the elderly man. There he presented me with several copies of a book he had written. It was written in Japanese but the title was translated into English, My Sunshine in Colorado. What a surprise to look inside the book and see photos of our family, our house, as well as other photos of his trip to Colorado.

What followed was one of the most amazing dining experiences of my life. They took me to a chic restaurant many floors high that overlooked an expansive vista of city, waterways, bridges,ocean, boats, and distinctive landmarks such as Tokyo Tower. The meal was exquisite, a traditional style of Japanese cuisine known as kaiseki. Every morsel was delicious and served with the most beautiful presentation. My hosts overwhelmed me with their generosity and hospitality.

A few months ago I received word from the elderly gentleman that he is writing another book and he requested that I contribute to it. He asked me to write about my thoughts and plans for the future of the world from a female perspective. I responded to his request and I may be published in Japan! I hope nothing is lost in translation. As far as I can tell, his books are self-published and their circulation is limited to his circle of friends and acquaintences. But it has been fun and all part of this greater adventure of becoming acquainted with Japan and its people.

I strongly recommend to anyone who would like to travel to Japan that the John Manjiro Whitfield Commemorative Cultrual Exchange is a great way to go. I would love to know if there are similar cultural exchange programs with other countires. The small bit of research I have done has failed to yield any but I assume they must be out there.

The Thunderbirds

Photos by Kim Carlson

One of the great things about where I live is being able to catch the Thunderbirds air show that follows graduation at the Air Force Academy. The whole front range area of Colorado Springs is their stage and they captivate all who live here with their breathtaking display of power and precision. Yesterday, Kim and I found a spot for lunch that made a good vantage point and we settled down for the show. I feel like a little child when I watch them as their magificent feats fill me with wonder,awe, and admiration.

The Soloist

There are few movies, especially at the theatre, that I can embrace completely. Many I can enjoy for one reason or another but it is rare that a film has the power to engage me totally. Last weekend I saw The Soloist and it met the above criteria. I experienced a deep sense of catharsis after watching it.

The Soloist is an uplifting movie but not a feel good movie. It does not have a happy ending in the traditional sense. It tells a story honestly and openly. The acting of both Robert Downey Jr. as Steve Lopez and Jamie Foxx as Nathaniel Ayers is excellent. The sweet sounds of the soundtrack left me longing for more beautiful classical music.

Good art depicts life as it is in a beautiful, aesthetic way. Director Joe Wright is a master at making a movie pleasurable to watch from an artistic standpoint. Woven throughout the film are these amazing scenes of cityscapes and so forth that ordinarily would hold no appeal but he captures them in such a way that creates beauty. There are aerial views of crisscross designs of freeways or parking lots with pigeons flying over. Pigeons are not considered the most beautiful of birds but they look graceful as they flitter across the screen in this context.

I think good art also upholds the dignity of human beings. Not only are the scenes aesthetically pleasing but they hold a deeper symbolic meaning. In the midst of the horrors of homelessness and mental illness, there is beauty in the lives of those suffering people. Sometimes it is obvious as in Nathaniel Ayer's talent even though for him it can never be fully actualized.

The film underscores the value of friendship; that it can matter more than anything when trying to help someone. It is a great film for anyone involved in Stephen Ministry. It illustrates the importance of grace and simply being present for somebody struggling with life.