Happy Saturday, Everyone! For many people, the weekend means spending time with family and loved ones. So, to pay homage to my wonderful family, I wanted to share with you an interview that I conducted with Andy and both of my parents.
Epilepsy, along with many other disorders, tends to bring everyone’s focus solely to the person that is diagnosed. How are they feeling? What are their side effects today? What were their most recent test results? Did they take their medication on time? How is their diagnosis affecting them socially/emotionally/spiritually? Are they happy? Are they depressed? How are their most recent injuries healing? If they lost their license, what time do they need to be dropped off/picked up?
The list goes on and on…
But what about how the caretakers are handling everything? How are THEY feeling? What do THEY need?
It took me quite a few years to realize that even though I don’t want it to, my Epilepsy DOES affect my family and those closest to me. I did my best to push people away so that I could “handle” everything on my own… but you can’t push people away that much when you rely on them to drive you everywhere.
Bottom line, I was pretty selfish. I honestly could not see how much my Epilepsy affected everyone else.
Today, I have a bigger perspective and am incredibly thankful that my parents were willing to stick with me while I grew up and grew out of my attitude.
I do not have children of my own yet, but I have come to realize that many times my Epilepsy diagnosis was probably harder on my parents than it was on me! They have held on to me during seizures, tended to my wounds, helped me unwind insurance puzzles, sat with me in the Emergency Room, driven me EVERYWHERE, reminded me to get back on track when I was eating/drinking things that I shouldn’t be, comforted me when I felt that I didn’t want to live like this anymore, and SO much more! They couldn’t just put their lives on hold when I was diagnosed, so instead they just figured out a way to carry the weight of my diagnosis while still continuing on with their own lives.
Andy joined our lives after I had been living with Epilepsy for about 8 years. Unbeknownst to me, he already knew I had Epilepsy when we went on our first date! I was worried that my diagnosis would be a deal breaker in the world of dating (and for some people, it was a deal breaker), but Andy accepted me unconditionally. He is the most positive person that I know, and he always finds a way to turn my road bumps with Epilepsy into something positive.
There are not enough Thank You’s in the world to show Andy and my parents the appreciation that they deserve. So instead, all I can do is take excellent care of myself and share my story to make someone else’s life with Epilepsy easier and more positive.
To gain an even better perspective on how Andy and my parents feel about my Epilepsy diagnosis, I decided to ask them all a series of questions and then share their answers with you! I hope you learn as much from them as I did! Please feel free to contact me with any questions that you may have.
Thanks again for tuning in and don’t forget to Seize The Day!
Below is the interview Q & A. Answers are separated for each interviewee; A = Andy, D = Dad, M = Mom
- How did you feel/what were your initial thoughts when you found out that I have Epilepsy?
A: I really think anything of it. I tried to do a little research on it once I knew, but to me, it makes you no different than anyone else.
D: I was thinking What? How? I knew about Epilepsy but didn’t really know details so I was afraid for you.
M: I was so afraid for you and sad for you. After your first seizure, when the neurologist you saw said it was probably just an isolated instance because they couldn’t find any reason for it, I started researching causes of seizures, and of course in researching seizures you see the word Epilepsy a lot. I prayed it wouldn’t happen again, I didn’t want you to have it. It seemed too big, too scary, and I didn’t want you to have to face that right at the time when typically young people are becoming independent.
- In your opinion, what is the worst part about Epilepsy being a part of our lives?
A: I think not really knowing when the next episode might hit. I know that when a seizure may happen, it can be really scary not knowing when and where, we just do our best to take the necessary precautions to be as prepared as we can be.
D: In the beginning, trying to balance your meds and not knowing how/if we could control it.
M: For me, the worst part is the unknown and not knowing when the next one will come, and if you will be hurt, and with each seizure the sadness I’ve seen as you realize what happened. When you had your first seizure, that is when I started having my cell phone with me at all times, I still do. Each time the phone rings with a number I’m not familiar with, it could be a hospital or ambulance telling me ‘we have Bailey here, she’s ok, but she’s had a seizure’.
- In your opinion, what is the most positive thing about having Epilepsy as part of our lives?
A: That you have started this blog as a resource for others who are affected by epilepsy so they can read about your experiences and reach out for support. A lot of the time, the medical community in my opinion tries their best to relate, but inherently falls short because they don’t always have personal life experience with it. You have a history with it and experiences no one else has that you’re willing to share.
D: Any time people share pain together or go through something together, you grow closer. And I got to drive you around a lot which was good time spent together.
M: Because we know first hand some of the obstacles in place for those living with Epilepsy or any disease/chronic condition, we have compassion and acceptance and understanding for others and don’t take for granted many of the things that we know can be gone in an instant. I think we have a good sense of gratitude, and want to help others to the best of our ability.
- How has my Epilepsy disorder most directly affected you?
A: It’s made me more aware of triggers and because of that hopefully a better partner. I try to be a good protector and learning what can cause or help prevent a seizure has helped me to hopefully be that better partner for you.
D: Watching your own child go through something is really rough, but it makes me so happy watching you rise above it.
M: I think the dynamics between moms and daughters – especially at the time in life you were diagnosed – is already a difficult one as moms have to learn to let go and let their daughters forge their own way, and for a time, even in the best circumstances, lines are crossed while we transition into and figure out our new roles. When you were diagnosed during that time, even though I did all I could to help, I made a lot of mistakes in my quest to help you ‘fix’ it, or to make things easier. But we muscled through and I learned a lot about letting you own this, and how to support you better without taking over. And you learned how to let me help without assuming I was taking over. Another way it affected me directly, is that I have been committed to doing what I can to be available to help you. And since I was going through a job change and also caretaking my parents, I made the decision to change careers and learning something new that would allow me the flexibility to work from home and during hours I could control so that I could assist when and where needed.
- What do you wish you could tell other people about Epilepsy?
A: That it may initially feel very overwhelming and you’ll have trials and tribulations ahead of you, but it’s manageable and can even be a blessing. You’re turning your diagnosis into a way to help others which I think is one of the best things you could have done. When life gives you lemons, you start a blog!
D: Epilepsy is like a puzzle. Be patient, work through it, and you will overcome it.
M: That it can strike anyone, at any time, and when it does, the person diagnosed is still the same beautiful, smart, loving, ambitious person they already were, but now they have some hurdles that many other people don’t have. I’m happy there are awareness campaigns, and I’d love to see more money funded for research, ultimately leading to cures or prevention possibilities. Before your diagnosis, I had no idea all of the various types of seizures people have. I had no idea about the many side effects of medication. I had no idea of the stigma some still place on those who have it. And for the type you have, I had no idea how scary it can be. People having a seizure need compassion, support, acceptance, not isolation and stereotyping.
- Since being diagnosed with Epilepsy in 2006, what physical/emotional/intellectual/spiritual changes have you noticed in me?
A: Physically and emotionally I’ve seen that it can be draining, but you’ve always bounced back really quickly. You don’t really let it get you down, which I’ve noticed you’ve transitioned those feelings into your every day life. You take the lessons you learned from your epilepsy and turn them into every day victories.
D: I’ve liked watching you grow more and overcome your Epilepsy while you share about it with others.
M: So many… Physically, each time you have a seizure where you are injured, it leaves little victory badges… broken teeth that are fixed, a small scar above your lip, sore muscles, abrasions, bumps and bruises. You are strong and are doing a good job staying healthy and active and keeping your body in good condition, which I think helps to prevent even more serious injuries. You watch your sleep and fatigue, and you are mindful of how that affects you.
Emotionally – huge growth since you were diagnosed. There was a lot of anxiety over this, and you’ve taken proactive steps to not let the anxiety own and dominate you. In addition to your own anxiety and fear, you had to field the reactions and anxiety of others, well intended as it was. And you kept going – when you had the seizure at college out in public and were injured and people were gathered around you and some took photos… that was mean and cruel, even if they didn’t mean it to be. Someone else may have just decided they didn’t want to risk that again and leave. You held your head up and went back to class, went back to work, went back to life. That takes a lot of emotional strength. You’ve learned how to read yourself, how to handle yourself – things that each of us has to do at some point, but the load on your shoulders was made instantly so much heavier with the diagnosis. I’m proud of what you’ve done. You have become much more self aware.
Intellectually – You’ve always been very very smart, and organized. Booksmarts/facts versus wisdom aren’t always the same thing though, and you’ve become more wise since your diagnosis. Using facts and speculation along with self awareness and a broader view of things has been cool to watch. You’ve found ways to use your intelligence and combine it with your compassion to help others, to further yourself and continue learning, and I am confident that will continue.
Spiritually – You’ve absolutely grown spiritually. At at time when some would shun their higher power, you’ve accepted that God has a unique plan for you, even if you wish it didn’t include certain parts of his plan. You’ve accepted it, embraced it, and are using it for good.
- Are there any ways that you wished I was able to handle my Epilepsy differently?
A: I think that you have handle your epilepsy extremely well since I’ve known you. There’s nothing that I would change about how you’ve handled your Epilepsy.
D: If I think you are not staying in balance the way I think you should, then I wish you would eat/sleep/diet better.
M: No, I believe you are doing great and have found a balance that allows you to prioritize self care and epilepsy management and advocating for yourself while still living a productive and successful life and now you are blogging, becoming more of an advocate, and I’m really in awe of how you handle it. I’m not sure I could do half as good.
- What is the most difficult (stressful, frustrating, painful, confusing) part of being the caregiver for someone with Epilepsy?
A: It can be stressful when you’re potentially on the verge of a seizure, frustrating that we can only control some parts of it, painful to see that you’re worried about if/when the next one might come and confusing when trying to find a reason for why this happens, but that’s when we just have to trust in God that everything happens for a reason and work through it together.
D: Just the unknown. Are the meds working this time? When is the next seizure going to happen?
M: Not being able to take it away or prevent it from happening, not knowing when it will happen, watching you have a seizure is so very scary. Knowing others have been less than kind, or that discrimination has taken place, or that there aren’t sufficient laws in place to protect your ability to have all of the healthcare resources… all of those are difficult as a mom alone, but as a caregiver, it is hard too.
- If you had the choice, would you change the fact that I have Epilepsy? Why?
A: I would love to take away your Epilepsy, but think that it’s a part of who you’ve become. I think that God makes each of us in his image and even though we don’t always know the reasons why, he has a reason for everything. I think that you taking the initiative to start this blog as a resource for others is possibly one of the best things that could happen from you having Epilepsy. I think if your Epilepsy was taken away, the Epilepsy community would be losing a strong warrior and advocate.
D: I’d take it away from you just to release you of the stress of the unknown.
M: Yes, if I had the choice, I would choose for you not to have it. The obstacles & circumstances it has placed in front of you – I would choose for you to not have had to experience them. I’m incredibly proud of how you rise up and navigate it and have determined to not let it hold you down. Several weeks ago, in the turmoil of our country’s political climate, Senator Elizabeth Warren was chastised and dismissed for her passion and desire to have her point understood. The phrase ‘nevertheless, she persisted’ was coined. The first time, and everytime, I hear that, I don’t think of Senator Warren, I think of you. You’ve had so much to handle, nevertheless, you persisted.
- Is there anything else you’d like to share?
A: I think that you’re very brave for taking what others may deem a negative and turning it into a positive force. It can be easy to get down about anything and everything and it takes a strong person to see the silver lining and that’s what you’ve done. I’m super excited to see the person that you become and glad that I get to call you my partner in life.
D: Your sharing about it and informing people with your blog is very cool and a really good thing for someone who is just recently diagnosed or has had a seizure for the first time. It would be a good thing to hear from someone who has already gone through it and knows what to do / not to do.
M: I have so much to say, I don’t even know where to start. You are just the coolest person..
Hello from Minnesota! I was diagnosed with Generalized Idiopathic Temporal Lobe Epilepsy in 2006. My goal is to create and contribute to a community for those living with Epilepsy & other neurological disorders, so that we can support each other, raise awareness, and share our hope for fewer seizures in the future!