Conditions - Coping with syringomyelia and Chiari

by Shawna Countryman

A diagnosis of syringomyelia (SM) and/or Chiari (CM) may affect us in many different ways. Dealing with the various facets of a long-term condition can leave one feeling alone, frightened and confused. Not only will we have to deal with the physical attributes but also the emotional aspects. Emotions can vary from anger, disbelief, frustration, denial, loss of control, depression, fear, anxiety or uncertainty. An effective way to fight back is to make the most out of our lives. Take the time to experience the good things in life, the things that give us real pleasure.

One of the most important things to remember is that this diagnosis is not an end, but the beginning of a new learning life experience. Although it would be nice to pick and choose what our life experiences would be, we are usually not given that opportunity. With the right focus, we can decide whether to look at our situations as negative or as positive. We can choose the direction in which we take the experiences. Living with SM/CM will bring many unexpected challenges, but that doesnt mean we cant be in control of our lives.

If we are living with a chronic condition, we are courageous. A longstanding disorder can add a new set of challenges to our lives. In the process of meeting these trials, we will continue to learn how to confront our fears and move beyond them. We may feel that we lose some of our independence if we have to depend on family members, friends and health care professionals more than we did in the past. None of these changes are easy. While SM/CM brings many challenges, there are ways we can face them and live productive, healthy, fulfilling lives.

Change our outlook: Realize that only we can change our outlook on life. Some situations cant be changed, so it is up to us to learn how to deal with the situation effectively. Maintaining a positive attitude can decrease stress and help us to get the most out of life. We may not be able to change our diagnosis; however, we can become involved so that we get the most out of our lives by giving ourselves a new perspective as well as renewed hope.

Educate Ourselves. Learn all that we can about syringomyelia and Chiari. Knowledge is power. The more we learn, the better we will be able to empower ourselves. Develop a Healthy Attitude. A healthy attitude will help us to balance our positive and negative thoughts. Focus Our Attention on Positive Things We Enjoy. Continue a hobby, project or skill, or start a new one. Express Ourselves. Find ways to express our feelings in a positive way, such as writing in a journal, exercising, painting or joining a support group. Develop and Use Support Systems. Share our feelings with family, friends, physicians, counselors or others who have the same diagnosis. Realize We Are Not Alone. We may feel isolated and that no one understands what we are going through. Know that we are not alone. Meet and share with others who are going through some of the same things we are. Laugh. Become involved in activities that make us laugh. No matter how sad we feel, laughing can make the world seem like a better place. Relax. Learning how to relax is one of the most important ways to cope with stress in a healthy way.
Love. Love ourselves, our families, our friends and others who are important to us. Read. Read something that inspires us. Whether it is fiction, non-fiction, poetry or literature, find something we are interested in and start reading. We can join a book club or web ring, which enables us to discuss our thoughts with others having the same interest.

Everyone sees situations differently and has different coping skills. By understanding our reactions and ourselves, we can learn to deal with our diagnosis effectively. Some may be able to continue daily activities as always. Others may have to trade in their favorite activities for new ones. There is no single right way of coping. Each of us must figure out what works best. However, a combination of the following coping skills is ideal.

Emotional Identification – we may prefer to deal with our feelings and find social supports.

Distraction Identification – we may use hobbies or activities to help take our mind off of the situation.

Task Identification – we may feel comfortable analyzing the situation and taking action to deal directly with the situation.

Just as stressors wear us down, being active can rejuvenate, restore and refresh us. The following list may help us identify what we can do to remain active. By taking action, we have more control over our lives.

Volunteer Work. Helping others can take attention away from our own worries. Find an organization whose mission and goals we support; give to others.

Use Relaxation Techniques. Meditation helps to ease the mind so we can think calmly throughout the day. It also helps us to focus on the positive. Meditation puts us in control of our thoughts. Other ideas are deep breathing, yoga or massage.

Hobbies. Take time to focus on a hobby. Whether it is writing, photography, painting, crafts, collecting, gardening, sports or any other hobby, do it with passion and enthusiasm. Consider it nourishment for our souls.

Socialize. Become more active in church; attend a gathering, a concert, arts and crafts fair or a support group.

Exercise. If we are able to participate in exercise, it will help to keep our bodies and minds healthy. If we cannot actively participate, we can go to a park and savor the environment; delight in the flowers, birds and trees. Watch others who are also enjoying being outside.

Get Away. Taking a break from our day-to-day routine can be stimulating and/or relaxing.

Get Enough Rest and Sleep. It is important to give our bodies the rest and sleep they need, especially when we are dealing with a chronic condition.

Watch Our Diet. Alcohol, caffeine, sugar, fats and tobacco all put a strain on our bodies. A diet with a balance of vegetables, whole grains, fruits and high in protein but low in fat will help create good health.

Devote Some Time Each Day to Ourselves. Take time to relax by listening to music, reading a book, watching a good movie, or playing a game.

The late, great amateur golfer, Bobby Jones, was diagnosed with syringomyelia in 1948. He described how he faced this challenge when he said, I still cant accept this thing. I fight it every day. When it first happened to me I was pretty bitter, and there were times when I didnt want to go on living. But I did go on living, so I had to face the problem of how I was to live. I decided that I’d just do the very best I could.

Our situation can bring out the best in our character, such as patience, determination, motivation or empathy. Or it can bring out the worst. It is up to us as to which one we let prevail. People today can get so caught up in work or daily routines that they forget to look at the big picture. Having SM/CM may give us no alternative other than to slow down our hectic lifestyle. Look at this as a positive aspect, for it provides us the time to look at our priorities and make changes if necessary. When we live with a chronic condition, every aspect of life takes on a new dimension. Our daily decisions and choices are taken into account more carefully. Take time to let the sun shine on our faces, smell the air after a gentle rain, or just listen to the activities of nature that surround us. And most of all, remember that we are not alone.

About the Author:

My name is Shawna Countryman, and I was diagnosed with syringomyelia (SM) and Chiari malformation (CM) in 1996. After childhood and adult years of medical problems and numerous misdiagnoses, it was a relief to finally find out what was wrong. However, little did I know I would be in for the battle of my life. After searching for months and going from doctor to doctor, I finally found a wonderful neurosurgeon and physician. This, however, was not done without a lot of determination and will power to fight and never give up hope.

I had an occipital cranial decompression a few days after my 30th birthday in 1997. After the surgery, I was in need of a neurologist. Most I found were not familiar with SM or CM. One neurologist denied I had either disorder, even after the surgery and after several MRIs confirming the diagnosis. I was told I needed to see a psychiatrist instead. He stated that if I did have SM or CM, I would not be up walking around like I was, that I would be paralyzed. During the family history interview, I mentioned that my mother had been diagnosed with lupus. He said, So, do you think you have that, too? and laughed. This was one of the biggest turning points in my life.

Always a strong woman, I had taken the diagnosis and the surgery with stride and continued to maintain a positive attitude. However, on this day, after a great deal of humiliation and shock, I sat in my car in the parking lot and cried for two hours, unable to drive home. I could not believe this man treated me the way he did or that he was a well-known neurologist. After this experience, I was determined to help make a difference for all of us suffering from the effects of SM and CM. I decided to begin by making a coping brochure. I did extensive research on positive coping strategies and interviewed almost 100
people who also suffer from these disorders. I would like to thank those who donated their time to answer my interview questions. The benefits are clearly evident with the outcome of this brochure. May this inspire all of us to fight for the best quality of life possiblebecause we deserve it! Never give up. This experience has made me appreciate life so much more. I do not take life for granted, and I thank God for each day I am given. Whether it is a good
day or a bad day, it is another day that gives me the fortitude to become a stronger, more determined, more courageous woman than I ever imagined.

With a BA degree in Psychology, I am now pursuing my Masters in Counseling Psychology. I currently work with individuals with mental retardation and those with developmental and mental disabilities.

Always remember that together we can make a difference, not only in our own lives but also in the lives of others. When we have hope, we have everything. Count our blessings, not our troubles. I leave you with one of my favorite quotes:

Happiness is not a state to arrive at, but rather a manner of traveling. – Ben Sweetland

Love & Peace to You All,
Shawna Countryman