I think I say this each and every time I participate in a fundraiser for the Epilepsy Foundation of Michigan. My heart gets so heavy. It’s impossible not to feel the connection and the camaraderie with others who care just as much for this cause.
Those of you living with, or otherwise affected by Epilepsy will probably agree with me, there’s a sense of pride and adoration for the organizations that do so much to better the lives of those of us with Epilepsy.
Thank you, thank you to the Epilepsy Foundation of Michigan for a ‘season’ of great Summer Strolls! As always, I was thrilled to participate with friends and family!
Below are some links to photos of the event.
It’s that time again…
I always get butterflies and yes, some goosebumps each and every time one of those exciting emails pops into my inbox: “Congratulations! You have received a donation to your 2011 Summer Stroll for Epilepsy Team, Brainthunders…” I can hardly wait to click on the link to see who was gracious and thoughtful enough to think of me and my family.
In the spirit of openness, here’s the scoop:
2011 Summer Stroll for Epilepsy, the Epilpesy Foundation of Michigan; June 11, 2011 at the Detroit Zoo; check-in begins at 7:30 a.m. and we start strolling at 8:45!
We are ready to go…no matter the weather (I say this because in past years, it’s either been a deluge or so hot and muggy I thought I would pass out). So, when a friend and fellow advocate reached out to me yesterday to chat about a few things, I became a bit concerned.
With good reason, he was troubled by what he called the ‘lack of response’ he was getting when it came to outreach and fund raising for various events. “I just don’t know if people care that much about this disease anymore,” were his parting words for me. He was concerned on the heels of some high dollar fundraisers, that people are putting all of their donation dollars toward certain organizations. He had what he himself called…donation envy. It really got me thinking. At what point do we, as Epilepsy advocates, have to take a deep breath, look the other way and realize that our cause isn’t everyone’s cause. And, more importantly, how do we raise the awareness bar? How do we fulfill our goals of teaching people about Epilepsy?
I’ve written about this topic before, and perhaps I was trying to self-help after receiving some negative response. But, I’ve come to the conclusion that in no way shape or form, can we expect support or understanding from absolutely everyone. And, we can’t be discouraged when we don’t get the help or the support we want. We have to work for it, and work hard. NOT EVERYONE UNDERSTANDS EPILEPSY OR EVEN KNOWS WHAT IT IS! So, it’s our job to teach them what the needs are and what programs are available. Don’t be discouraged when someone says, “no”. Make that your reason to work harder to teach and advocate. Never ever judge someone because he or she gave to a cause that’s not your cause. Make advocating and teaching that person about Epilepsy, your goal. We’ve come so far in these last few years, and I’m only speaking from personal experience. Honestly, I had never even heard of the Epilepsy Foundation of Michigan until my diagnosis in January 2003. And let me tell you, I don’t know that I could live this life without them.
So, stretch those fingers and get typing in your email; clear that throat and pick up that phone and reach out to family and friends; heck, do things the old fashioned way and mail some letters seeking funds…but it can be done!
P.S….here’s the link to the Summer Stroll for Epilepsy Brainthunders team page, if the spirit moves you to help! And…as always, many, many heartfelt thanks!
I write about friendship often.
Friendships, along with the close bonds I have with my tiny family, really sustain me. I have always tried to be a good friend and I value and treasure the relationships I have with those who are so close to me. My group is tight-knit, and I have friends who have known me throughout this journey with Epilepsy and those who knew me long before seizures became part of my everyday life. You know someone’s a close friend when they volunteer their help or their assistance when it comes to things like errands, without any mention of it from me. In other words, there is a tremendous level of acceptance.
I think it’s because of my constant battle with seizures…I tend to really analyze comments from people. I know everyone can’t be as kind, supportive and helpful as others, but I’m someone who knows when I’m imposing, so I tend to not even go there with some people, and I HATE imposing!
After all, you’re talking to a woman who has a lot of ‘help’ in her life. I have help getting to and from my new job; I have help getting my daughter to and from school and her various activities; I have help with my appointments and errands.
What’s this all leading up to? Well, here’s the scoop…I decided last night on our loooonnnng drive to a weekend get-away in Northern Michigan, that I’m going to do an ‘audit’ of sorts. I’m tired of wondering if people are bothered by my illness. I can’t let what I believe others think of me, get me down. It’s detrimental to my health and the well-being of my family. Friends are people who love and accept you for who you are, and Epilepsy is part of who I am. If a mother doesn’t allow her child to play at our home out of fear that I’ll have a seizure and ‘scare’ her child…so be it.
Those of us with Epilepsy must be strong and we shouldn’t have to battle for acceptance. That’s my story and I’m sticking to it!
Ugggh, it’s been WAY too long! My apologies to those of you who frequent Brainthunders. I really have no good excuses for not posting in about 6 weeks, but I believe I have a reason. So, here goes!
On January 3rd, I started a new job. Yes, a full-time job. It truly wasn’t one that I applied for, but it was one which I was contacted about, and after interviewing and learning more, I became extremely interested in. So, here I am…a Public Affairs Officer for a major Detroit hospital. And, life has been so incredibly busy!
Heading back to work really got me thinking about ability and how able I am to manage my Epilepsy, manage my household, take care of a 5-year-old and…work (not to mention picking up after all three humans in this home, and two fur-people). Being a working Mom is quite a feat, but being a working Mom who also manages her own neurological disorder seems at times, to be quite a marathon. Still, in just 6 weeks, I’ve come to the conclusion that it can be done, and I’m not one to give up.
Since I don’t drive (and Detroit has one of the worst public transportation systems in the nation!), I’ve hired someone to drive me to and from the hospital. I rely on my wonderful sitter to assist me in getting Hayden to and from school and her activities. I lean on my husband and my Mom now and again for transportation and logistical support. And, as I’ve always said, there are a few friends who step up and assist me in managing my world. But, the most important factor in taking on this job, was my employer’s acceptance of the fact that I’m able to perform my duties, I understand my responsibilities, but I live with this illness, so I am different. There’s no other way to say it. I have Epilepsy, so in order to do this, I must work from home a couple of days each week.
I learned a lot when I proposed my ‘Alternative Work Agreement’. Yes, I understand that there are companies that aren’t exactly accepting. But, I like to think that for all those that aren’t, there are two that are.
So often, we go into a situation with a negative outlook. “There’s no way they will understand my Epilepsy and they aren’t going to let me work from home.” But, if you take a much more positive approach, “I’ll explain my Epilepsy, but first, I’ll elaborate on my qualifications and my accomplishments, and I’ll re-define my commitment, then I’ll ask them to understand my needs.”
We are different. Period. I’ve had grand mal seizures in front of some of the most powerful people in Corporate America, but it’s never hindered my abilities to perform my job. More than ever, my Epilepsy has given me the confidence to continue to work.
So, this morning I’m grateful for the ADA and I’m thankful that there are accepting and understanding people out there. I know there will be those who disagree with my outlook, but for me, it’s my strength. And, in this new endeavor of mine, strength is most important.
Being a caregiver, whether you are talking about Epilepsy or anything else, is one of the toughest jobs on the planet. Really.
So, when I was asked to write an article for the December 2010 issue of Epilepsy USA Magazine, I was thrilled. The focus was a bit different…caregivers who live with Epilepsy. I frankly felt it was high time we put a bit of focus on this segment of the Epilepsy population.
When I began to reach out to people who fell into this category, I was floored to find so many who, in their household, hold the same role I do; they manage a household, a family, some hold full-time jobs, they remain as active as they can be…and they live with Epilepsy.
So, this morning…as I wake Hayden for school, try to squeeze in some folding of laundry, make sure the house is tidy as I leave for the day, let the dogs out and feed them, AND take care of myself…I am thinking of all of you who are sort of like brothers and sisters to me when it comes to this struggle!
Thanks again to all those who helped me in researching this story!
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.
I don’t know about you, but I’m the first to admit…I’m horrible when it comes to New Year’s resolutions.
I can set them, but I typically either forget them within days or completely ignore them. I always attribute it to the fact that my life doesn’t need much change, nor can I tolerate it. Some of my more infamous declarations:
-I will stick to a strict schedule when it comes to ‘house stuff’, i.e. laundry. Somehow, by January 6th, I end up with 8 loads for the 3 people in our house.
-I will organize my finances this year. This is something I’ve been promising myself for 3 decades.
-I will organize my closet and donate the clothes and shoes that haven’t touched my body in more than 5 years (this from the ex-on-air news person who swears she can ‘wear any of my old suit jackets with a pair of jeans). Much of my stuff doesn’t even fit.
-I will cook healthier food for my family. Still, my heart melts by January 4th when Hayden pleads with me to make my ‘famous’ (famous in her mind) fettuccine alfredo, made with heavy cream.
-No sweets because I know sugar is a seizure-trigger. Oh please…do I have to even explain this one?
-No unnecessary stressing because again…a seizure-trigger. As much as I would love for stress not to get to me, it does, and I don’t think a new year will make much of a difference! After all, I am a realist.
So, I was thinking this morning, are there some realistic resolutions that I actually might adhere to? And, can I make sure they not only benefit and define me, but are also issues I care so deeply about? Here goes…
I promise to continue to push the Epilepsy issues I care so much about: No driving if someone has seizures; Making sure anti-seizure medications are available to all who need them and those who can’t afford them; Making sure medication switching at the pharmacy is stopped; Research, research, research; SUDEP is a concern and something everyone should be informed about; Access to seizure-alert dogs for those in need, AND a push to stop the abuse of the concept (you can re-read my post on those who can order ‘fake’ ID for their dog in order to pass them off as assistance dogs so they can fly-when will the government catch on to this and DO SOMETHING!?).
Last, but not least, I promise to stay positive when it comes to Epilepsy Advocacy. So many times, we can’t control what others think and feel about Epilepsy and life with seizures. But, we can teach. We can advocate. If there are those who seem to discriminate, teach them. If you have family that doesn’t seem to understand, feed them information. Be a ‘poster-child’ for living well with Epilepsy. If we all make a promise, we can start 2011 with a bang. Happy New Year!
“It is curious that physical courage should be so common in the world and moral courage so rare.” Mark Twain
With all of the coverage I’ve seen of Elizabeth Edwards since her death, I can’t help but think; what a truly remarkable woman. You can say what you want about her political positions…her support of her husband who defied their trust and abandoned his marital commitment. But she was truly the epitome of courage and resilience.
When I reflect on stories of courage, I can’t help but try to relate. I spoke yesterday to a very dear, old friend who has gone through a personal crisis and loss. She is not living with any sort of illness, but rather she continues to deal with the loss of her marriage and the realization that the person she thought was her lifelong partner, is no longer the man she believed in. She went into great detail about the Christmas she has planned for her very young children, and the life she plans to build, or re-build for herself in the next 12 months. I was both proud of her and respectful of her courage and her ability to forge ahead.
Granted these are entirely different stories and in no way are they related, but in thinking about them, I was encouraged by both. Not only did Elizabeth Edwards not let her cancer define her, but my friend is not letting her personal crisis and the turmoil her kids seem to be experiencing, define her.
Having the courage to identify yourself with not just the negative, but mainly the positive is a gift. And, it’s something I’ve worked hard to achieve. I’m determined to not be labeled…labeled as that girl who ‘got really sick and now has seizures, can’t drive, has to hire someone to help her get her child and herself around,’ and the list goes on.
If you have Epilepsy and live with disabilities and inabilities, defying that ‘label’ is really up to you. There are ways to achieve your goals and live your dreams, although it might be more challenging. I can’t do away with my Epilepsy or my seizures, but I can make sure my life is as ordinary as it can be. And, I can make sure people see my strengths rather than my weaknesses. For those people who don’t see the strengths and continue to emphasize the negative…I can’t make room in my life for them. Period! After all, I have a family to take care of…to protect.
In many ways, this attitude is a gift I give myself and my family. What’s your story?
I’ve been on hiatus for the last week…digesting my Thanksgiving meal, catching up with family and friends and overall…just resting. WOW did that feel good! So sorry if you’ve checked in and wondered if I went missing! But sometimes I think we all need some time to re-group!
We journeyed to Maryland for Thanksgiving 2010 for a few days, to stay with my husband’s parents. Since I lived in his hometown during two different periods of my life, I have many friends and acquaintances there, so as is typical with our visits, there were many reunions with people from my past. And, also typical…there was much anxiety and frustration.
I’ve written several times about memory loss and the aggravation and stress that go along with it, but visits like my holiday stint last week really add to my difficulty of living this life with Epilepsy.
It’s one thing to not recognize people you meet or bump into, but it’s entirely a different story when you can’t remember important times in your life. Life events and our memories of these times really identify us and help form our personality. They shape us. So, when your mind tosses out these memories, it’s almost as if you become an incomplete person. That’s where the frustration lies.
My brother-in-law is a huge off-shore fisherman. But it turns out, my husband once loved the sport, and I had little or no recollection of that. I vaguely remember weekend days when he would go, but it was very sketchy to me, and that was overwhelmingly upsetting. My very sweet sister-in-law is accepting and understanding of my affected brain, and almost automatically, she takes it upon herself to remind me of events and moments in my life. But still…to not remember something so important to the one you love? For some reason, this holiday trip had a bigger impact than usual on my ability to remember. My memory loss affected me more so than usual.
So, when I returned home Monday evening, I began to dig…dig into my past. I looked through literally hundreds, even thousands of photos which are stored on my computer, some are prints…in books and bins. I came to the conclusion that I barely remember certain events, but the pictures certainly help trigger my memory.
Memory loss due to my seizures is something I know I will always struggle with, and the fact that it will most likely worsen is quite daunting, but I’m thankful for my close friends and family who can tolerate and console me.
It’s amazing, isn’t it? November is two-thirds over. That means another National Epilepsy Awareness Month will be history!
I’ve been fascinated by and so proud of all of the advocacy and awareness efforts. It seems that Facebook and Twitter have been dripping with purple this month, along with all of the blogs and websites! You all…or WE…should be very proud of our efforts to promote Epilepsy awareness. And, I know it’s not over yet. As someone who is always watching the process, I have to wonder: how successful have we been in moving the needle?
Last Friday night, I was having a conversation with someone at the Epilepsy Foundation of Michigan‘s regional conference. We were discussing a variety of things, but soon our talk turned to the topic of how we engage those we know and love to understand and appreciate life with Epilepsy. She told me that she feels as if she is sailing these waters alone…or flying solo in her battle to raise awareness. Forget about the fact that her seizures are under control and she takes amazing care of herself…she is a consummate advocate and she gets so discouraged and frankly, furious when others don’t realize her plight. It’s as simple as sending out a mass email to more than 200 of her contacts, which she did with the link to the Epilepsy Foundation’s ‘Get Seizure Smart’ campaign, and not one person responded to her.
“Do you think I seem too healthy? Do I not appear to be sick enough…therefore they don’t want to advocate with me or support this cause?” she asked.
It’s a legitimate question, really. And, one I’ve wrestled with often.
I’m sure everyone who reads this blog can agree…it can be downright offensive and hurtful when someone you know well doesn’t support your mission. I’ve been there, numerous times, but I think I’ve come to understand how to deal with the feeling. Whether it’s a tiny donation for a fundraiser or something as simple as a response to an email to raise awareness, I don’t believe that they don’t care about me or the cause.
We can’t look at it as disregard or heartlessness. People have their own causes and their own concerns, and many times they make conscious decisions about how to spread themselves and their support. I had someone I know tell me last March, when I was raising money for the Epilepsy Foundation of America, as we were getting ready to head to Washington DC for the National Walk, that she and her husband, ‘just don’t get into those things, therefore they don’t donate.’ I was horrified. She knew me so well and knew of my plight with Epilepsy. But really, it was her choice not to give, just like it’s my choice to throw my efforts into supporting the Foundation.
Rather than feeling abandoned and discouraged, I like to turn my hurt into effort. There are so many ways to point out Epilepsy to people. So, here goes:
-Mark someone’s birthday by making a donation (it can be as small as $10) to your Epilepsy Foundation affiliate or CURE…or any organization you are associated with. They will receive a note letting them know a donation has been made in their honor
-Holidays…rather than a materials gift, make a donation in honor of the recipient
-When someone passes away, no matter what the cause of death, you can mark their passing with a donation to the organization of your choice
-If you are emailing or sending an appeal, be really specific…tell a story or point out what the organization provides to people like you. Be personal! Don’t just ask.
-Be gracious. Really. Do you follow-up with a thank you note? Do you send photos from the event?
I’m not one to dole out advice, but take it from me…you’ll feel a lot better if you don’t take ignorance personally. You become a better person and a better advocate if you stay positive.