Another Day Along the Way
Tuesday, November 22, 2011
Another day,
Like most months these days, November arrived quickly for a brief visit. Soon she’ll be gone. But, unlike other months, November highlights two realities we should remember all year long:
- Become more aware of epilepsy
- Choose to give thanks whatever our situations
Those two themes–often forgotten and ignored; often distant from each other–live together in my life. One chose to be a part of my life. And I must never let the other one leave my life. As a man living with epilepsy, I can also live as a man who is thankful.
Today I am very thankful that more people are becoming aware of this historically misunderstood word: epilepsy.
Adrian Egli has been living with Epilepsy since childhood but has been able to grasp the deeper processes going on in his brain. Adrian says, “When things don’t work our way with epilepsy, too often we let ourselves be driven into a ‘cold thought mode’– the ‘Why bother?’ or ‘It’s not worth it’ thoughts. But we should never forget to remind ourselves that each moment is just that–a moment. What might be cold one moment can turn over and become warm the next.”
Epilepsy groups around the world have worked to bring warmth to an area often seen as a bitter cold reality. The warmth of updated information, authentic conversations, healthy stories, medical options, and community partnership has encouraged many of us living with epilepsy.
My friend Dr. Liow agrees. Kore Liow, MD, FACP, FAAN is the Director of Hawaii Pacific Neuroscience, Hawaii’s Leader in Neuroscience Care and Clinical Professor of Neurology at the University of Hawaii John Burns School of Medicine. Dr. Liow has been involved in the care of epilepsy patients for over 15 years–having cared for on the average of over 1000 epilepsy patients a year, with the majority of them difficult to control. He understands the struggle and the burden placed on these patients. Prior to Hawaii, he has established and directed one of the busiest epilepsy centers and epilepsy drug trial sites in US and has been involved in the development and clinical trials of most of the new epilepsy drugs and treatments currently in the market. His advice is healthy medicine for us all: “The best thing someone with epilepsy could do is never to give up hope. Never stop searching for what works best to get the seizures under control or finding the right doctor and the right treatment. There are always new developments and new treatment options. Never give up.”
Cathy Conley, from Standish Maine, works in a research lab. She is an example of patients who choose never to give up. She asks, “Ever get tired of where you are with your health? Are you still sitting on the couch wanting to give up? I personally found that if you’re not happy in the situation you’re in that you can’t rely on anyone but yourself to change it. If you’re not happy then get up off the couch. Take control. Make a change. It’s all up to you. I would still be where I was five years ago if I didn’t take control of my own destiny and do something. Now I have been seizure free for over five years because of that. Just remember: There is life beyond epilepsy!”
Her words remind me how we often pursue either of two mistakes: avoidance or obsession. We ignore our conditions, do little research, refuse to talk to others, and fight the battle alone. That, my friends, is not fighting at all. Or, if we go to the other extreme, we live as if epilepsy is all there is to life. Our moods, our medications, our memory, and our seizures control everything. That, my friends, is not healthy either. We can find a balance of facing our condition, finding the best medication possible with minimal side effects, talking about it, learning about it, and living life unhindered by the word epilepsy.
I’ve learned so much through my own journey. And, like many people with epilepsy, we can learn even more from those who know us best. Debbie, my wife of 30 years, says, “Although epilepsy is a very difficult thing to cope with as an individual, I don’t believe it should define who a person is or limit what they can do. There are certain precautions that should be taken, as with any medical situation, but that should not be an excuse not to take part in life. It should not be the focus of one’s life either. Epilepsy is something to be dealt with, but people with it can go as far in life as they want to. My husband has epilepsy because of injury to his brain from a bout with encephalitis. He has been an inspiration to me and many other people because of his tenacity to overcome it and do the things in life that he wanted to do. I believe you set your own limitations in life, and epilepsy does not have to be one of them.”
Our family learned how that is more possible when others are there to help. Taylor, our oldest son, believes that “epilepsy is something that makes everyone involved aware of a weakness, not only the individual diagnosed. And it can also make everyone unify to conquer it.”
That is what we want and need to see happen. Teamwork works. Partnerships bring support, information, inspiration, and new medications. People who often feel alone realize others can relate to their mood swings, their struggle to get enough sleep, their battle to remember what happened a few minutes before. Together, we can seize the moments awaiting us.
Patricia A. Gibson is a dear friend who is helping make major changes in our culture’s view of epilepsy. Ms. Gibson is Director of the Epilepsy Information Service at Wake Forest University School of Medicine and Acting Director of the Epilepsy Foundation of North Carolina. Read her words from a recent dinner celebration of Epilepsy Month in Chapel Hill, NC: “When I look back over the years when I first entered the field of epilepsy I am amazed at the progress we have made. In the 70s there were only a handful of neurologists in North Carolina, like most states. We basically had two medications–phenobarbital and Dilantin. We had no blood levels, and when seizures continued, the dosages were simply increased. Many people with epilepsy lived their lives in a drug induced stupor. We also didn’t know that too much Dilantin could cause seizures as well as too little. We had no way of looking inside the brain; we had only skull x-rays. In just a few decades, there has been a major leap in technology and understanding of the brain. Access to information now is immediate. There is some incredibly exciting new research going on in the field of epilepsy and I believe we are close to another big leap of technology and understanding that will make a tremendous difference for those with epilepsy in our lifetimes.”
Just as technology continues improving, our personal attitudes and involvement can continue improving. Yes, I have epilepsy. But I have so much more. And there is so much more we all can do to make a difference.
If you live with epilepsy, do not travel through your life journey alone. Seek teammates. Ask questions. Pursue friends who can relate, friends who can listen, friends who care.
If you don’t live with epilepsy, find someone who does. Ask them questions. Learn how you can help. Offer support. Ask others to offer support. Give money. Give time. Give prayers. Together, let’s partner to see a bright future of awareness about epilepsy and the continuing improvement of treatment.
And, together, let us believe we can give thanks even when living with epilepsy. As Taylor said, “We can unify to conquer it.”
Along the way,
Chris Maxwell
Powerful Statement: Inner beings can dare the mind to mind us, refusing to let disabilities destroy our true abilities to adjust, adapt, and rejoice amid our mental power outages. (Chris Maxwell: Changing My Mind)
How can you help? How can you learn more?
Purchase copies of Chris Maxwell’s books Changing My Mind or Unwrapping His Presence. If you tell Chris your desire to partner with epilepsy groups, he will donate a portion of his funds to an area epilepsy support group. Email Chris at CMaxMan@aol.com
Watch the four YouTube interviews to learn from Chris Maxwell’s story:
http://ec.edu/news/campus-pastor-interviewed
Listen to the Epilepsy Advocate Radio show, hosted by Chris Maxwell:
http://www.blogtalkradio.com/epilepsyadvocateradio
[Editor's comment: Chris Maxwell is a young friend of mine. He is one dynamic person whom you would love if he were your son or relative. I am happy to promote Epilepsy Awareness at Thanksgiving. Although this article was rather lengthly, it is worth the time to read it in its entirety. I know I learned from it things I did not know. He is the Campus Pastor at Emmanuel College. We are honored that he is there to bless and minister to the students of this great college in Franklin Springs, GA]
Posted on
Tue, November 22, 2011
by Hugh Morgan