Living with Epilepsy…and Living in Fear

He who fears to suffer, suffers from fear. French Proverb

Fear is such a huge part of living life with Epilepsy…at least it is for me.

I live in constant fear of when the next seizure will strike; where I’ll be when it does strike and who will be with me. I’m not always public with my fears, but they are incredibly distracting and controlling. Many times, it’s so easy to keep them bottled up. And, because I have fears, it’s easy for me to shelter myself…to stay away from activities that I used to enjoy prior to my diagnosis in 2003. I also use my fear as an excuse. What if I’m with people who don’t understand seizures? What if no one knows what to do? What if they are so uncomfortable, they decide to leave me there, mid-seizure, to suffer?

Don’t get me wrong…I wasn’t one who liked to cliff-dive or swim with the sharks. I was no daredevil, but I was active, and skiing was something I thoroughly enjoyed.

So, in March of 2009 when I had my VNS implanted, I put away my skis. It sounds crazy, but I was petrified that someone would run into me on the slopes and wreak havoc on my neck. Or, I would fall and something disastrous would happen to the device. I know, I know…ridiculous; but I convinced myself that ‘I couldn’t ski’ because of my health.

Not true, and I knew it. I created the situation in my head and it constantly nagged at me.

So, this week as I continued to watch Hayden progress on the slopes (she’s gotten SO good!), she continued to beg me to take my skis out of storage. I knew my husband was also eager for me to get back in the game. So, they left me no choice. Andrew had an idea.

On Thursday, I dressed, put my helmet on and snapped on my skis. “I have a perfect plan,” he said. “Just follow me.”

So, at 11:00 am, he introduced me to “Doug”, my ski instructor. He had booked a 2-hour lesson for me with someone who had deep experience and determination.

I shook Doug’s hand and began to rattle off the reasons why I hadn’t skied in almost 2 years. I barely gave him a chance to speak. I gave him my whole schpiel…the down and dirty reasons, from the seizures to the surgeries, as to why I ‘couldn’t’ ski. And when I finished, he took my poles, leaned them up against the brick wall of the lodge along with his, and smiled.”Let’s go,” he said, as we jumped into the chairlift line.

“Don’t fear your fear,” Doug said to me on the lift. “If it’s something you want to do, make it happen.”

So, in 120 minutes, on that sunny slope in Northern Michigan, Doug wasn’t re-teaching a woman with Epilepsy how to ski, he was helping someone who had taken ‘a break’, brush up on her skills. “Do you think for a second, that if you have an incident on these slopes, that no one would come to your aid?” Doug asked. Made sense to me. “You can’t succeed if you don’t forget your fears.”

By the end of the day, my 5-year-old was making plans for a grand ski trip with Mommy and Daddy. And, I was forever grateful to someone who frankly knew very little about Epilepsy, and didn’t have to. He was a pro at helping people conquer fear.



{ 13 comments… read them below or add one }

Trevor January 2, 2011 at 9:41 am

Alysse,
Thanks again for the great post. When I had my first seizure, it really changed my life, since I was a calculating daredevil. I raced cars and coached racers, traveled, adventured and generally lived a bit on the edge.
When I first began to have seizures in 2000, I tried to deny it was happening to me. After a few more, I found that I had to reconcile the fact that this was the way my life was going to be, and it didn’t have to be the end of my lifestyle. Through hard work, lifestyle changes, conquering my fears, and determination, I have been able to maintain my adventurous lifestyle. If a seizure is going to stop me from living, so be it, but I will not stop myself from living out of fear, and I commend you on making the same decision for yourself and your family.
Keep up the great work on behalf of us all.
Trevor

bryan farley January 2, 2011 at 12:46 pm

awesome. great story. hope to see you soon.

bf

Theforgotten February 22, 2011 at 4:59 am

It must be nice to live without fear. In november last year i had a seizure and sustained a concussion which has left me with long-term PCS. Each day i feel foggy and disroeriented which causes me to panic since these are the same feelings i get before a seizure. I have dislocate my right shoulder 7 times from siezures and had numerous medication changes to no avail so my worry isnt unjustified. I live in a third-world country and am poor so there is little chance of me ever seeing an OR.

Alysse March 5, 2011 at 10:57 am

Thinking of you…thanks so much for writing. Please, please take care of yourself!

Michelle August 23, 2011 at 7:14 pm

I can remember having seizures think back in college. But I never had fear because I didn’t really know what it was. Well, I was diagnoised like some people with depression disorder, for 9yrs. I was hospitalize this past may 2011, when I went in this time I knew that I wasn’t bipolar like they were telling.. Well I have to say that I was so happy that I had a seizure while in there. At the point, the doctor’s finally figured out what was wrong with me. But I do have a bit of fear because I don’t want to be with people that do not know what to do or how to handle a seizures. I have however decided to live for the day and live one day at a time. I have since applied for work. I have been 3 an a half months without a seizure which is awesome not like when I first came home from hospital I had them several times a day. Someday I will snowboard n ski again but for now, I will swim, fish and ride my bicycle everyday. I do have a dog that at 6 months that predicted my ashmia attackes as well as my seizures Tazzy never leaves my side. I guess my fear is that are the med’s gonna work like they do now. I will also say, that you really know who your true friends are when you get sick. They stay by our side and ask what they need to know n how can they help.. The others just run away and hide… To bad their missing out of having a great friend.. I wish everyone that suffer like myself good health and happens

Teresa Tichy October 23, 2011 at 2:29 pm

I completely unstand you the fears, I have no aura as to when they are coming on.I have gone for walks and while crossing the street I went into A siezure with on coming traffic. I fallen down stairs and sustained injuries. I have found that even being out fishing as relaxing as that is I have them. I am at A point now where I can no longer be alone at any given time. My seizures last anywhere from 6min to 18min and at times I multiple ones. The neurologist appointed for my SSI\SSDI hearing declared that I am having three different siezures at the same time. I am so happy to hear that someone out there is able to overcome there fears and live A life. Keep up the good work.

theresa February 10, 2012 at 10:57 pm

I know what your going through about the fear. I have had seizures since I was 11 years old i am now 29 years old now. It is a scary situation but you have to remember that if you let it take your world in its hands it will take over. I had seizures almost every weekened and then it slowly spreaded out to every 6-8 weeks with 3 seizures at a time. At one point I never wanted to leave the house but then I realized I can’t stay in the 24/7. I compeleted highschool, 2 college diplomas, started working and I perform at church now and I have written 2 poetry books and receieved a nomination for a black history award. I have accomplished so much and I will never let this condition live my life for me. You have to remember that the Lord is here with you and you need to pray and set your goals and take one step at a time.

theresa February 10, 2012 at 11:05 pm

These are some things that you can do to help your condition: chinese medicine, evaluate the vitamines in your diet you could be lacking a common one is calcium and magnesium, vitamine b complex, exercise to release tension and stress from the body if it is safe for you, let those around you know about your condition so you can go out and have fun like a normal person,get enough sleep at night, check your diet,watch the sugar caffeine,alcohol. check what you could possibly be allergic to and stay away from it that could easily trigger seizures. I have non -epileptic seizures they come during my periods, when i have a fever flu or cold and also at the beginning and end of a season. Also check the suddden temperatures in your room or your environment you are in daily.

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Vince April 12, 2013 at 12:20 am

I have anxiety the last few days of thinking I am going to have another seizure and be rushed to the hospital once again the last 4 /times in 6 months. I can not stop thinking of this. I am scared out of my mind at times . On top of that I have to wear a cpap machine too every night. The doc did feels it was lack of oxygen but I still seize out. Keppra meds errrrr. Anyone feel my anxiety?

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