Friday, December 19, 2014

The Chelesa Foundation for Epilepsy in Winchester, Virginia



THE VILLAGE AND THE EPILEPSY LEADERS IN WINCHESTER

On Nov. 12, 2014 I was invited to come to the Chelsea Hutchinson Epilepsy Event to help raise epilepsy awareness. It was a very successful evening.




The event was coordinated by the leaders of the Chelsea Hutchinson Foundation for Epilepsy Awareness from Winchester, Va.  This couple is Steven and Carol Shafran who invited me to the event. I was selected to help MC the event and also share my book "The Village" and the power of the Village Concept to help educate society about epilepsy. The event was held at the George Washington Hotel in the area and the turnout was great! This included a Boy Scouts Group, individuals, and generations families which showed the support that was formed by the leaders. The information about epilepsy that was shared and how it inspired others attending to speak about epilepsy was incredible. My good friend and strong supporter, Art Yannucciello of Va. Beach attended and he was very impressed!

There was an official proclamation from the City of Winchester presented to the Shafrans proclaiming the month of November for Epilepsy Awareness. Also in the proclamation it recognized the outstanding work accomplished by the Winchester Friends of the Chelsa Hutchinson Foundation (Steven and Carol Shafran) for increasing epilepsy awareness and hosting various events including the annual walks held in Winchester. They received a standing ovation as this was presented to by the Mayor of Winchester.

I also shared with everyone my reason for writing my novel and the main character I had created to represent epilepsy, "Mr. Kevin Bolden." This all went over great as people were looking for individuals willing talk about epilepsy. Well they now have "Mr. Kevin Bolden." Our goal is to use my novel as an educational tool for society! I myself along with others want to see a movie done to help open the hearts and minds of people about epilepsy. I feel "It takes a village" of people to make a difference in the world of epilepsy and I feel I have found a village in Winchester, Va. I am "Thankful!"

Sincerely.
Lowell G. Evans
Author of: "The Village"- Representing society
Creator of: "Mr. Kevin Bolden"- Representing epilepsy
Email- thevillageiscoming@gmail.com

Thursday, December 18, 2014

The Mother and Son from Alabama Made My Day


Mollie Campbell <mc.molliecampbell@gmail.com>
12:49 AM (10 hours ago)
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Why families need a "Village of Support" for Epilepsy
                                                                                                                                                                                                                                                                                                                       
                                                        

Mr. Evans,
My son picked up your book the other day and asked me to tell him what it was about. I had not had the chance to read it completely yet, but I spoke to you while purchasing the book at the expo in California. After telling him what I knew about the book he said, "oh mama, that's a book about me." My son is 8. His name is Keithan. He's had seizures since 1 1/2. He was finally diagnosed at age 4 after countless er drs, first responders, pediatricians, nurses etc had told me "he's fine. There's no need to call and ambulance or come to the er. He doesn't need to see a specialist." I was torn. For nearly 3 years, my mother's instinct told me one thing and the professionals told me something else. I was a young mother struggling to go to college and work as I could. You see, I couldn't afford daycare at the time and anyone in my family that was willing to keep him for little or no money was scared he'd have a seizure so they either found an excuse to keep from hurting my feelings or were just totally honest. It hurt but I did appreciate the fact that I had people that cared enough to not be over confident in their ability to care for him and just be honest with me. When he was finally sent to a neurologist, I just knew that I would get the answers I'd prayed for all that time. As I left the office, I looked back at his little self in my rearview and cried the whole 1 hour drive home. He asked me what was wrong and I couldn't say anything to him. I should have asked someone to go with me, but with what all the professionals had told me before, I guess a small part of me wanted to believe them. So, I took him by myself. When we got home, I went to my parents and told them the news. My 70yr old father broke down in tears apologizing. You see, my dad has epilepsy as well. He fought for our country and has faced many challenges that many men would crumble under...but knowing what his grandson was facing brought him to tears. My heart broke all over again. I did not blame my dad and it hurt me to know that he blamed himself. I told them how all the way home I wanted to stop at the hospital and pediatrician and beg them to tell me why they lied. Why didn't they tell the possibilities? Why did they give me false hope? These are people you should trust. I will never forget the paramedic that told me I didn't have to call them...I looked down at my child lying limp in my arms, not breathing normally. I kindly told him he could either drive my child to the er or get out of my way so I could. These are all flashbacks that went through my mind as the news sunk in years later. At that point I made up my mind that no person that came in contact with my child would not know about his condition. I also knew that the battle would be hard at times but regardless, I would promote awareness. I immediately began researching. True, I'd seen my dad have seizures for years. But it was different watching it take over my child's body. He started medication and the changes to our lives began. The preschool teacher would call, "do you care to come get Keithan? He's having a hard time staying awake." I'd get to the school and she'd be holding him like her own child. He had a seizure at a local splash pad..the lifeguard ran up to us and looked at him laying on the ground not moving.."he shouldn't have been horse playing!" His great grandmother not so kindly told the lifeguard what was happening and that he'd just stopped seizing. His entire attitude changed. My baby was less than a foot from a drain that was full of standing water. It's only by God's grace that he didn't land in the puddle. It could've been much worse. We went through a few hospitalizations, medicine changes, tests, bloodwork...everything eventually leveled out and the seizures didn't come as frequently. He started "big school" and that was a different struggle. Some of the higher ups didn't want to give him the plans he needed to succeed but I fought. Everything leveled out again.. I was just learning the roller coaster of epilepsy. I found out I was pregnant soon after my son was diagnosed. The first thing I asked the dr was about the chances of this baby having epilepsy...that's another thing I've leaned about epilepsy. There a very few "solid" answers. And as a mother, that's the one thing I wanted most other than to take the battle from my child and fight it myself. My youngest son, Carlin, was born in November. Everyday I prayed. Age 1 1/2 rolled around and Keithan and I were laying in the bed with him. Suddenly I felt the bed moving. I jumped up knowing what was happening..Keithan was having a seizure..only as I jumped up, Keithan jumped up as well. He was nearly 5, but he was smart. "Mama, bubba is having a seizure!!" He went crazy. Crying and screaming that I not let his brother die. Thankfully, Carlin has had normal tests results and hasn't had as much activity but I will always worry. I have been pretty much a single parent through all this. But I thank God for every struggle. While reading your book, I remember trying to work at a job making very low wages..and having to sign a form acknowledging that taking my kids to the er or dr would not be an excuses absence and would result in termination. I knew this would not be the job for me, but kept working until the time came that I had to take one of them to the dr. My only thought was, "how can they tell me that I will lose my job for taking care of mum kids?" But I was te one that signed the papers so I knew I couldn't argue. I just began to work as a substitute teacher and wash cars or mow lawns for money. My parents helped too. The more research I did, the more I came across terms like SUDEP. I then came in contact with the Emfit corporation. I could not afford one of their monitors, but the lady was nice enough to give me contact information for a group that may be able to help me. The Danny Did Foundation in Chicago. I left a message and made other plans. I called my local banker and explained lmy situation. We were to meet the next day. Thirty minutes before my scheduled meeting with the banker, Tom Stanton from DDF called my phone. They were going to pay the full cost for a monitor! God is good! I immediately asked what I could do in return. His only request was that I raise awareness for epilepsy. His 5yr old nephew died from SUDEP. I eventually did a bake sale raising $900 to go back to them. That would cover the cost of one monitor and half of another! So yes, you get what you give. Only they were gracious enough to give to me before I had the chance to return the favor. Seeing the support from my tiny town motivated me to organize the first ever epilepsy walk in our county. Somewhere around 50 people came. I think I cried the entire time. Especially when I introduced myself and honored the people with seizures/epilepsy. Three of which were my dad and two boys. My boys have faced more in their short lives than I have my entire 28 years. I gave birth to my heroes. They never stop. Even with all the issues that come with epilepsy besides the seizures. My oldest son has a best friend in school. He had leukemia. They stick to each other like glue and have since kindergarten. I did a little class for his classmates and explained about epilepsy. This was spurred on by the fact my child would come home from school crying because he'd felt funny during the day and was afraid to have a seizure in front of his friends. There have been times when I've talked to people about what my kids face and cry or have a lump in my throat. But when my sons best friend asks me to give him a "team keithan" purple epilepsy shirt...I know that we have a village too! This is the same friend that had leukemia. His name is Trevor and my son has a team Trevor leukemia shirt...the one thing I wish the world would understand is that epilepsy doesn't just affect you for the duration of your seizure. It doesn't affect only the person having the seizure. I have finally found a job that understands my children's illness and my need to be at their side anytime I'm needed. True, I don't make much money and we struggle, but I am working and my children are healthy. Many jobs won't keep you around if you have to miss work like I've had to do at times. I'm just thankful I found one that finally works with me. Not against me. I've had mothers or friends tell me they don't know how I do it. This always puzzles me. I want to ask them just what my other options are in their opinion , but I know that they only mean the best. I know I have rambled on, but I can relate to a lot of what your book is about. Epilepsy doesn't get the limelight it needs to get funding and research. The stigmas that go with epilepsy and the fear of the uneducated do so much harm. People in general don't even have the first idea as to what seizure first aid is. My children are my world. I know they're only loaned to me from The Lord. And I also thank him for givig them to me and trusting that I can take care of them even with this illness...at times I do feel overwhelmed but I look at them and see that they don't give up. So why can I be selfish and give up?! I can't. And I wont. From Stevenson, Alabama, you have a mother and two little boys who know what epilepsy can do to your world! Financially, emotionally, physically, and mentally. We are here, but please know we are now a part of your village. Please don't stop! If you ever come this way, please let me know. May God bless you. May He help us fight this and promote awareness until there is a cure! On the inside cover of the book we purchased, you wrote, "Keithan you are a winner! Remember you have epilepsy but epilepsy does not have you!" Yes! You're correct. And I plan to keep your book forever. I will give it to him when he is a little older and remind him of how far he's come.  Thanks to people like you, he will go far.
Sincerely,
Mollie Campbell

Sent from my iPhone

Thursday, December 11, 2014

The Letter About Epilepsy


LETTER TO ME AND MY CHURCH MEMBERS ABOUT "THE VILLAGE"

Lowell Evans:

I am taking this opportunity to bring awareness of how significant the impact of knowing you and your sharing of yourself has helped not only me, but my brother (Kirk Hawkins) as well.

It is indeed ironic that we have been neighbors for some time, yet never did our paths cross.  Rather, (as is always God’s way) at the right time, for the right reasons, (God’s time is a good time) we met and it has been an event (then and now) filled with ministering, testifying, and supporting one another. 

I thought attending and sharing in the joy of your book signing was a momentous occasions, and I could not have been prouder or happier for you.  Yet, the events that took place at my home on April 16th, solidified for me that which I had been telling you, “this book, your trials and tribulations, the lives you touch via your book” are a part of something greater to come. This book, your testimony and all that come with it, is your ministry.

As I shared with you, my brother (Kirk) is an epileptic. He had gran-mal seizures from early childhood until adulthood.  Eventually, (as an adult) he was told he was seizure free. Yet it was not the seizures that scarred him for life mentally and emotionally, it was reactions from our parents, (most especially my dad) extended family members, school administration staff, and friends that has forever (then and now) marked him. 

As a result of ignorance, my father (who was a man’s man and detested weakness in a male) screamed, beat, threatened, berated, belittled, anointed, laid hands on, and ridiculed my brother in an attempt to “exorcise the demons” that was bringing on the “fits”.  He (my father) was convinced there was nothing of a medical nature wrong with Kirk, but more of a “Spiritual” nature.  In Kentucky, the Bible was the key to all things known and unknown.  As such, if “laying on of hands” didn’t work in most instances, “laying on of the belt” (switches, drop cords, etc.) would. 

 

As word of Kirk’s abnormality spread through our small community, so did the whispers, giggles, exclusion from play with his peers (in case it was contagious), rumors spread labeling him as “retarded”, and viciousness from children and adults ran rampant.

Eventually, Kirk was taken to the doctors and massive amounts of Phenobarbital and Dilantin was prescribed.  Yet the damage was done. Nothing could be done (diagnosis or no) to sway people from their Bible thumping, demonic spirits, beliefs. The effects of the drug treatment plan in fact exacerbated their beliefs as he exhibited signs of drowsiness, being extremely lethargic, sometimes confused, and at times, drooling.   

When my brother graduated, he entered the United States Army. Shortly after joining, he had another seizure. For the first time he was given an effective treatment plan and reassurance that he was not a “retard”.

For the next 15-20 years (from about 1977-1999), our family never saw Kirk, and rarely did we hear from him.  In 2003, Kirk reappeared.  However, he revealed (to me alone) that he was not well.  Additionally, with much bitterness, he shared with me how his previous years of treatment with respect to epilepsy had destroyed his faith in people, almost caused him to kill himself, had led him to drinking to forget and caused him to separate himself from “family”.

When I met you (Lowell) and you shared your book and your life as an epileptic with me, I was impacted in ways you could ever know the full scope of.  The memories of Kirk being beaten were so very overwhelming.  I think for the first time in my life I understood just what he had gone through and I began to thank God for sustaining him in spite of it all. Sadly, my father (deceased since 2004) although enlightened about epilepsy, never truly accepted my brother had a true medical disorder.  As such their relationship (dad and Kirk) remained strained until his passing. 

On April 16th, I shared with you that I had not heard from Kirk in 2 years.  I knew of your desire to minister to him that “he had epilepsy, but epilepsy did not have to have him”.  Lowell, when my home phone rang and I saw Cell phone, Ind. on the caller I.D., I knew God had heard our pleas. What would be the odds of Kirk calling me on that day at that time after a 2 year silence?  Before I answered that phone, I knew it was my brother.

As you know, he shared with me he was calling to let me know the nature of his illness had prompted his doctors to inform him of a need to finally share and invite a relative into his affairs. Before I could wrap my thoughts around that however, his next words stopped me cold.  He said, “Sis, I can take anything except the possibility of those seizures reoccurring. I would rather die than have another seizure. But the Holy Spirit told me to call you because you have something or someone for my seizures”.  Lowell, I could do nothing except hand you the phone.  I could give no introduction, I could say nothing. But I knew in my spirit without a doubt you were meant to be in my home at that time on that day for my brother.  I handed you the phone that day knowing something bigger than epilepsy was going to take place.

Lowell, on that day, the over whelming presence of the Holy Spirit was in this house. Thank you for that day and the days that have followed since then. Thank you for being obedient to the will of God in your life.  Thank you for taking the time to speak with my brother on not only that day, but other days.  Thanks for your words of encouragement to him.

Finally, thank you and your church congregation for the last act of kindness you have shown my brother.  You took my brother’s name and depth of despair before the body of your church. Many, many members signed your book with in depth words of encouragement and promise to continue to Pray for him. I did not know of this act of kindness. Truly I did not know that you and my brother’s relationship had evolved to the point of you knowing his address.  My brother is a very private, reclusive type person.  Lowell, I don’t have his address then or now.

My brother called me to report he had received the book from you.  Lowell, I was in awe of my brother’s awe in knowing someone cared enough to send the book, that people took the time to write to him personally in the book, that an African American man (you) would reveal to the world he has epilepsy.  I listened as my brother quoted scriptures, praised God, and talked about his past and his anger at having epilepsy.  Most of all, I listened as my brother began to heal a little.

Lowell, my brother asked me to  tell you on that day that if you did not hear from him in awhile, not to worry, but the overwhelming feelings that book and the words of encouragement from the congregation was new and a little too much for him.  Yet, he shocked me by saying “sis, tells my story to Lowell or anyone. But make sure you tell it all”.

Lowell, Kirk Hawkins had epileptic seizures. But he finished school, mastered a trade (as taught to him by our father) as an electrician, served our country honorably in the United States Army for many years, became a husband, father and now a grandfather. He (like you) is the face of epilepsy.

My brother said he Prays no one ever has to have seizures, yet he thank God for avenues of education such as your book to put not just a medical term to the illness, but an instrument such as yours that will actually give a face to the illness.

 

Thanks again!

We (Kirk and I) wish you the very best in your endeavors now and in the future.    

6/15/11