My mother who died from a seizure...

[Jason Marchelak]

Hi, I just recently came across your website and thought I would share my story.

On December 12th 2008 not long after my mum's 46th birthday (17/9/62) I and my brother (Daniel) had decided to visit mum as she wasn't answering her phone on her mobile, which was odd as she always would answer. Well basically Mum was left alone round Daniel's room, shared accomodation, and she locked the door behind her after my brother was arrested by the police for an outstanding warrant. 3 days later he was released from custody and explained the situation to me and I thought it would be best if we go and see her.... Anyway I live in England, and was living in Leigh-on-Sea in Essex and Daniel came round mine, we had no money and we both had drinking problems (I will also discuss this further later) so we decided to steal 4 cans of stella called (Grande) strange that because after opening them I said (over Southend football ground where me and my brother sat down to drink one) I hope my mum hasn't had a tonic-clonic seizure. I was worried because she had these in the past tho infrequent, she suffered mostly from petit mal fits and regaining conciousness within seconds..... We both bunked the train to Brentwood and because Daniel had no keys and were left inside the building where our mum was we were let in by an elderly lady, and Daniel managed to break the first door into the communal area, hence no keys, and shouted out through the letter box "MUM" no response....so we bashed that door down then I was frozen stiff in shock! The place was a mess, the TV was still on face down on the floor, an upside down chair and mess everywhere, I didn't iniatially find her straight away until I look down on the floor, and my heart just sank in disbelief and I said to my brother Mum is down there, look, face down on the floor on a duvet. I thought she was drunk as she was an alcoholic who detoxed and then eventually devolped epilepsy as a result of the brain damage accompanying the illness. I shook her and I tried waking her up in a desperate attempt to regain her conciousness but I knew it, she was gone, I took a look at her face her eyes were wide shut and there was congealed blood from her nose and I ran outside of the room and called 999 in a full blown major panic attack.....After the paramedics came I was escorted out with Daniel into a police van where they assessed what was going on I couldn't stop crying, I was shrieking in heartache, and the nasty Police officer told me to stop crying as I was drawing attention to myself, i replied MY MUM IS F*****G DEAD how would you feel! After that nearly 4 years down the line I am still trying to come to terms with her loss and so young, such a shame how life can be so cruel to someone who gets better after drinking for years and just suddenly dies 2 years after. However, grieving over mum took me and daniel to the edge and I am now a recovering binge alcoholic and been dry for 5 months now and I am only 23, my brother has a serious problem also, but he doesnt address this yet. I have had alcohol withdrawal seizures before, totally unaware of them when they happened, and I was shocked, but on 2 occassions I actually felt them coming on as my head would turn i would start to shake and my arm would go up into the air, I get told I go into a bundle and just stare without convulsions but have had them in the past through previous detoxifications, and Daniel also suffers the same and they are most always convulsive. I have had my tests like EEG and MRI and results showed no abnormatlity... Ever since I found out my mum had epilepsy and the death of her triggered me emotionally to help other people who experience this as I have had, tho not epileptic, but symptomic results leading my fits. In the death certificate it said natural causes and was epilepsy, but I will never understand what happened why didn't she just wake up after it, why die? I don't understand what happened? Maybe status or one after the other, I know about them after being diagnosed with bacterial meningitis last year and had multiple fits and was taken in and fully recovered.

I know she wouldn't of suffered but the scene was so distressing I still have difficulty coming to terms with what I saw and my loss...

 

[Fedup]

Jason Marchelak

Jason how do I express my sympathy or try and help. Epilepsy take many shapes and forms for many reasons, sometimes the end result is heartbreaking but in truth no one can give a reason. All we know is it can happen and its not nice, how you come to terms with it I do not know for me it started with remembering the good times and going on from there. Epilepsy is something we live with, something we have to fight each day and each day brings a new battle in different ways. Each and every person with epilepsy no matter how it happens or how small or big has the same things to deal with and you have to try and smile.

 

[nicholas:)]

Jason, welcome to cwe. Thank you for sharing your story. I'm sad at your loss.. your trauma is understandable. Hey, great you have been dry for five months! Sorry about your brother - I hope he can sort things out.

You have to hang on to the fact that your mother would have passed quickly. You will never rid yourself of the image of your dead mother. I still have the image of my dead father, not pleasant, who died in 1991. The police behaved badly. You have to put those things behind you and somehow build a future for yourself.

I cannot offer any help - I can just listen. Your story is so raw I can feel it. You need to be proud that you have shared it with us - it's not just words on a forum.. it touches people. Please stay around.. there are some good people here who all have a story to tell.

Thanks so much for sharing

 

[Jason Marchelak]

Thanks for your comments, I have now realized with drinking cessation that life goes on and I have to live my life, but I really hope she is proud of me now, not what I did in the past and I know she is with me in spirit whatever happens as I don't think what has happened and where I have been to in this time in my life if it wasn't for her I know it sounds silly, but I know she didn't suffer and is watching down on us!

 

[nicholas:)]

Your mother will live on through you, and she will be proud of you! Hey forget what you have done in the past.. move on. Live in the now and build from here.
Chin up, shoulders back and your best foot forward!

 

[Jason Marchelak]

Your mother will live on through you, and she will be proud of you! Hey forget what you have done in the past.. move on. Live in the now and build from here.
Chin up, shoulders back and your best foot forward!

I will thanks for listening and I really appreciate your comments!

 

[Fedup]

Jason Marchelak

As usual it takes a writer (Nicholas) to say it. You can be sure you are looked down on and will always be looked after. What in the past stays in the past. Best of luck in the future Jason.

 

[jyearta]

Please don't beat yourself up on your past, we all have a past.
Remember the good times you had and Nich. said she will live on through you.

 

[Chaz1]

Jason,

Very sorry for the loss of your Mother, listening to you, she was well and truly loved by her children and no doubt she knew that. As I sat here reading your story, from a Mothers perspective I can tell you, your Mother would be so proud of you, in fact proud is an understatement.

Young and old can learn from your life experience, of which some is so heartbreaking, but you have through all this sadness managed to get and stay sober and you have your whole life ahead of you, keep the sobriety going and dedicate it to you Mum and to yourself, for the happiness you deserve going forward. Listening to you, I can’t help but feel, you are going to mean a lot to a lot of people.

You are a true inspiration! Will pray your brother follows in your footsteps.

Keep sharing your story, everywhere and anywhere you can.

 

[Jason Marchelak]

Jason,

Very sorry for the loss of your Mother, listening to you, she was well and truly loved by her children and no doubt she knew that. As I sat here reading your story, from a Mothers perspective I can tell you, your Mother would be so proud of you, in fact proud is an understatement.

Young and old can learn from your life experience, of which some is so heartbreaking, but you have through all this sadness managed to get and stay sober and you have your whole life ahead of you, keep the sobriety going and dedicate it to you Mum and to yourself, for the happiness you deserve going forward. Listening to you, I can’t help but feel, you are going to mean a lot to a lot of people.

You are a true inspiration! Will pray your brother follows in your footsteps.

Keep sharing your story, everywhere and anywhere you can.

Thank you so much that really means an awful lot to me thank you very much and I will, for my mum, keep and stay sober and positive through whatever I face in life, as I don't think after what I have been through much worse can be thrown in my face to deal with to drink all over again! Again thank you xx

 

[Nakamova]

Jason,

We suffer many losses throughout our lives, some small and gradual (like the depredations of aging or illness), some sudden and enormously painful like the death of your mother. It's important to grieve these losses -- there's no shortcut around the grief, and you carry it with you until you are (paradoxically) strong enough to put it down and leave it behind. But the memory of your mother -- that is indeed worth holding fast to, and drawing inspiration and energy from as you move forward. I wish you continued good health physically and emotionally. The way you live your life will be a tribute to your mother, and an inspiration to others coping with similar struggles.

Best,
Nakamova

 

[Flowerchild]

Hi Jason,
Thank you so much for sharing your incredible story of your mom's death. I am so sorry for your incredible loving loss! Losing a loved one is devasting!! I lost my wonderful, loving, Awesome husband Spence to Sudden Unexplained Death in Epilepsy last November 2011. It's been a very tough year for everyone involved, but I would not be here with out the loving support of my AWESOME two families & extended families, friends, Acquaintances and an incredible counselor and grief counseling group. Everyone's loss is so different and personal to them and everyone grieves differently. One thing that does help me is talking about it like you are doing on this forum, and/or finding a local grieving group, counselor and a close supportive group of family and friends. The counselor may really help, especially since you had such a traumatic experience, that's something you just don't get over, you have to work through the pain in order to get through it. The professionals may also have many other suggestions or treatments that can benefit you. Also, keeping a personal daily journal and logging your feelings and experiences may also help. I hope this helps. Renee

 

[Jason Marchelak]

Thank you for all your comments and support! I really do appreciate it! I am doing my best and thats all I can do, but knowing she wouldn't have felt anything brings some justice, unlike a murder, otherwise it would be completely different and I wouldnt stop till justice has been served..... Just that SUDEP was the cause and it unfortunatly can happen to people, which isnt really that well understood....

 

[MaeDae]

i am doing my best and thats all I can do, ....

i wish nothing but the best for you and your brother. We all can only do our best, we shouldnt settle for anything less!

a big hug for you and your brother!

 

[2ndchances]

I'm so sorry to read of your mom...thanks for sharing your story. It takes a lot of courage and heart. Take good care, all the best.

 

[Cint]

Just that SUDEP was the cause and it unfortunatly can happen to people, which isnt really that well understood....

Jason,

I'm very sorry to hear of the loss of your mother thru SUDEP. As you stated it can happen to anyone, unfortunately, as we lost our beloved Spence who was such an inspiration here at CWE. I also met a lady here at my local Starbucks who lost her 17 year old daughter to SUDEP. She has started a SUDEP awareness walk every summer so people are aware that it happens plus we need $$ for more research into SUDEP.

My heart goes out to all of you who have lost loved ones due to this ugly illness.

 

[Jason Marchelak]

Jason,

I'm very sorry to hear of the loss of your mother thru SUDEP. As you stated it can happen to anyone, unfortunately, as we lost our beloved Spence who was such an inspiration here at CWE. I also met a lady here at my local Starbucks who lost her 17 year old daughter to SUDEP. She has started a SUDEP awareness walk every summer so people are aware that it happens plus we need $$ for more research into SUDEP.

My heart goes out to all of you who have lost loved ones due to this ugly illness.

I'm sorry to hear that, it must be hard but I don't know whether or not they do any event of that type with SUDEP here in England. If it did then I definatly would become a member of any such group! My heart also goes out to everyone who experienced this trauma one way or another, it's a pity there really isn't much awareness and even saying that also about fits because I saw a dog once on my seafront and was fitting and I said to a bloke in a chip shop said what's happening, I said he's having a seizure and he turn around and said what's that? Some people just don't understand that these happen not just with us but also animals and anything with a CNS! Pity people don't understand was fitting means, they just think your either dying or being possesed, but there are some many form of them that only people seem to understand T/C's when there are a wide variety of fits in the illness altogther! xxx

 

[car05161967]

I'm sorry to hear that, it must be hard but I don't know whether or not they do any event of that type with SUDEP here in England. If it did then I definatly would become a member of any such group! My heart also goes out to everyone who experienced this trauma one way or another, it's a pity there really isn't much awareness and even saying that also about fits because I saw a dog once on my seafront and was fitting and I said to a bloke in a chip shop said what's happening, I said he's having a seizure and he turn around and said what's that? Some people just don't understand that these happen not just with us but also animals and anything with a CNS! Pity people don't understand was fitting means, they just think your either dying or being possesed, but there are some many form of them that only people seem to understand T/C's when there are a wide variety of fits in the illness altogther! xxx

Jason, That is so true, about the only seizures that 'society' cares to think about, are TC's. Any other type of seizure, 'society' at-large will think the person is either mental and/or, doped up on illegal drugs.

 

[KarenB]

So sorry to hear about your loss -- I lost my mother last April, and it is so painful.

But, as mentioned above, your greatest memorial to her is exactly what you're doing now -- alcohol free and drug free. I know she would be really proud of you, and hopefully Daniel can follow your example.

From personal experience (with our little boy), tonic clonics can be really devastating to the body's system. He has been in ICU and hooked up to the monitors when in "status" -- and the seizures didn't last long, maybe a minute or two, but when he had a seizure -- his heart rate would go up to around 180 or 200, and his oxygen levels would drop down to around 50 or 60 (even when he was getting supplemental oxygen). This kept triggering the monitor, and the code team would come flying in. So, in his case, everything would return to normal within several minutes, but it's easy to see that a prolonged seizure, or even several seizures in a row could overwhelm the body -- the heart especially, and also the loss of oxygen. Even when he's only having tonic seizures that last less than a minute, he'll start to get low on oxygen if he has a number of them in one day (we'll notice his nails starting to turn blue) -- so we'll have to get him down to the hospital for supplemental oxygen.