Coping with Chiari and Syringomyelia – by Shawna Countryman
A diagnosis of syringomyelia (SM) and/or Chiari (CM) can affect us in many different ways. Dealing with the different facets of a long-term condition can leave one feeling alone, scared and confused. Not only do we have to deal with the physical characteristics, but also the emotional aspects. Emotions can range from anger, disbelief, frustration, denial, loss of control, depression, fear, anxiety or uncertainty. An effective way to fight back is to make the most of our lives. Take 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. While it would be nice to pick and choose what our life experiences would be, we usually don’t get that opportunity. With the right focus, we can decide whether to view our situations as negative or positive. We can choose the direction we take the experiences in. Living with SM/CM will bring many unexpected challenges, but that doesn’t mean we can’t be in control of our lives.
If we live with a chronic condition, we are brave. A long-term illness can add a new set of challenges to our lives. In the process of facing these trials, we will continue to learn how to confront our fears and move beyond them. We may feel that we are losing some of our independence if we are more dependent on family members, friends and healthcare professionals than we were before. None of these changes are easy. While SM/CM brings many challenges, there are ways we can meet them and live productive, healthy and fulfilling lives.
Change our outlook: Realize that only we can change our outlook on life. Some situations cannot be changed, so it is up to us to learn how to handle the situation effectively. Maintaining a positive attitude can reduce stress and help us get the most out of life. We may not be able to change our diagnosis; however, we can get involved to make the most of our lives by giving ourselves a new perspective and renewed hope.
Educate ourselves. Learn all 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 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 us. 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, doctors, counselors or others who have the same diagnosis. Realize we are not alone. We can 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. Get involved in activities that make us laugh. No matter how sad we are, laughter can make the world seem like a better place. Relax. Learning to relax is one of the most important ways to deal 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’s fiction, non-fiction, poetry or literature, find something we’re interested in and start reading. We can join a book club or a web ring, which enables us to discuss our thoughts with others who share the same interest.
Everyone sees situations differently and has different coping skills. By understanding our reactions and ourselves, we can learn to deal effectively with our diagnosis. Some may be able to continue daily activities as usual. Others may need to trade in their favorite activities for new ones. There is no single right way to cope. Each of us has to figure out what works best. However, a combination of the following coping skills is ideal.
Emotional identification – We may prefer to deal with our emotions and find social support.
Distraction identification – we can use hobbies or activities to help take our mind off the situation.
Task identification – we can feel safe analyzing the situation and taking steps to deal with the situation directly.
Just as stressors wear us down, being active can rejuvenate, restore and refresh us. The following list can help us identify what we can do to stay active. By taking action, we have more control over our lives.
Voluntary 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 ease the mind so we can think calmly throughout the day. It also helps us to focus on the positive. Meditation gives us control over 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, concert, arts and crafts fair or support group.
Exercise. If we are able to participate in exercise, it will help keep our body and mind healthy. If we cannot participate actively, we can go to a park and enjoy the environment; delight in flowers, birds and trees. See others who also enjoy being outside.
Get away. Taking a break from our daily 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 dealing with a chronic condition.
See our diet. Alcohol, caffeine, sugar, fats and tobacco strain our body. A diet with a balance between vegetables, whole grains, fruit and high protein but low fat content will help to create good health.
Spend some time on ourselves every day. 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 can’t accept this thing. I fight it every day. When it first happened to me I was quite bitter and there were times when I didn’t want to go on living. But I continued to live, so I had to see the problem of how to live. I decided I would just do the 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 which one we let win. 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 but to slow down our hectic lifestyle. Look at this as a positive aspect because it gives us time to look at our priorities and make changes if necessary. When we live with a chronic condition, all aspects of life take on a new dimension. Our daily decisions and choices are more carefully considered. 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 adulthood of medical problems and numerous misdiagnoses, it was a relief to finally find out what was wrong. However, I did not know that I would be in the fight of my life. After searching for months and going from doctor to doctor, I finally found a wonderful neurosurgeon and doctor. However, this was not done without a lot of determination and willpower 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 needed a neurologist. Most people I found were not familiar with SM or CM. A neurologist denied that I had either disorder, even after surgery and after several MRIs that confirmed the diagnosis. I was told to see a psychiatrist instead. He said if I had SM or CM I wouldn’t be 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 you think you have it too? and laughed. This was one of the biggest turning points in my life.
Always a strong woman, I had taken the diagnosis and surgery in stride and continued to maintain a positive attitude. But 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 couldn’t believe that this man treated me the way he did, or that he was a renowned neurologist. After this experience I was determined to help make a difference for all of us who suffer the effects of SM and CM. I decided to start by making a coping brochure. I did extensive research on positive coping strategies and interviewed nearly 100
people who also suffer from these disorders. I would like to thank those who gave their time to answer my interview questions. The benefits are clear with the result of this brochure. May this inspire us all to fight for the best possible quality of life because we deserve it! Never give up. This experience has made me appreciate life so much more. I don’t take life for granted and I thank God for every day I get. Whether it’s a good one
day or a bad day, it’s another day that gives me the strength to become a stronger, more determined, braver woman than I ever imagined.
With a bachelor’s degree in psychology, I am now starting my master’s degree in counseling psychology. I currently work with people with mental retardation and people 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 problems. I’ll leave you with one of my favorite quotes:
Happiness is not a state to reach, but rather a way to travel. – Ben Sweetland
Love and peace to you all,
Shawna Countryman
