Should SUDEP Ever…

“Because we do not know when we will die,
we get to think of life as an inexhaustible well,
and yet everything happens only a certain number of times .

How many more times will you remember
a certain afternoon of your childhood
that is so deeply a part of your being
you can’t even conceive of your life without it?

Perhaps four or five times more?
Perhaps not even that.
How many more times will you watch the full moon rise?
Perhaps, twenty. And yet it all seems limitless.” — The Sheltering Sky

Death. It is a topic that most people don’t want to talk about. It is also a topic that most people aught to have the conversation about at least once. Especially if you have a condition in which death could pose a threat. Of course, I have no intentions or expectations on passing away. None of us do. I want to live until I am old and gray with my husband and our future children at my bedside and The Lord calls me home. However, I have Epilepsy. I simply can’t just ignore the fact that SUDEP (Sudden Unexpected Death In Epilepsy) exists. Its real. Its a reality. People have unfortunately died as a result of a seizure. Now, from the moment I was diagnosed with Epilepsy, I do all that I can to stay healthy and protected. SUDEP may or may never happen to me, but should SUDEP ever happen, I think its vital to be prepared ahead of time. I believe its important to have documentation or a Will of your wishes should a time come that you pass away. A Will is intended to save your family time and money, and give you peace of mind.

Every year, it is estimated that up to 50,000 deaths occur in the United States from seizure-related causes including Sudden Unexpected Death in Epilepsy (SUDEP)CURE Epilepsy

Knowing that I have a condition that does come with a threat to my life has caused me to put everything into perspective. To love more. To give more. To embrace life more. To understand more. Epilepsy has made me a completely different person for the better. Life is so precious and so fragile. Never waste a single solitary moment of it. Never let a moment slip away where you could tell someone you love them. To tell someone “I’m Sorry”. To tell someone just how much they mean to you. If you see a positive opportunity, take it without second guessing yourself.  You never know if that positive opportunity will be your only positive opportunity you will have.

When I mentioned having this conversation with my husband, the conversation of documenting my wishes, understandably he was hesitant to want to have this conversation but he understood that it was important to me and that I was doing it out of love. In having the conversation, I want to spare him any added heartache should I pass away. Heartache of what to do in preparation. What to do with belongings. Would it be what I wanted? Would I approve etc…? My grandmother was sick the entirety of her life. Tumors and cancers of many sorts. To spare my grandfather added heartache, she began the process of getting her affairs in order knowing that she would ultimately surrender to her illnesses. My grandfather loved my grandmother so much that he just couldn’t and wouldn’t have any part of it. Knowing his love for her, she understood but pressed on to spare him added heartache. Ultimately, when she did pass, her affairs prepared allowed him to grieve and grant her wishes as she asked.

My grandmother was a very smart woman and I take after her in many ways I would like to think. Should SUDEP ever find me, and should I pass away, of course I understand if you grieve but I ask that you grieve for a time and wipe away your tears. Smile because know that I am in the arms of Jesus and family who’ve passed before me. Smile because I no longer must suffer a single seizure again. Smile because I am having a conversation with the Lord asking Him to cure Epilepsy and all ailments on Earth. Smile and continue to advocate and educate for Epilepsy in all corners of the Earth.

I would want no traces of the color black at my funeral. Though a passing is a sad and somber occasion, I would more, enjoy something of a wake. A celebration of life and a celebration of going home to Heaven. I would hope to have lively beautiful colors worn and displayed. Uplifting and peace filled music. Perhaps a releasing of balloons or bubbles. Anything positive. Anything happy.

To those who have passed away from SUDEP, know that you are remembered with immense amounts of love. Know that you are celebrated and advocated for here on Earth. Families of those lost, know that you are prayed for. Know that you are thought of with love. Know that there are many advocating for a cure so that not another life must be lost.

I would highly encourage that though it may be hard, if you are diagnosed with Epilepsy or if a loved one is diagnosed with Epilepsy to consider the conversation. Consider the Will. Consider out of love for those who love you. This consideration is not one of a depressive or negative matter. It is an important matter.

I love my friends and family so much that I want them to be able to lay me to rest, have their time to grieve and remember me with peace in their hearts with my affairs already documented.

“Smile though your heart is aching
Smile even though it’s breaking
When there are clouds in the sky, you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through for you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile

That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile” — Nat King Cole

One of my favorite song of all times. Always all the days of your life, remember to SMILE.


I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

One Comment

  • Karen

    Oh so beautifully written Tiffany, as you know my sister lost her 15 yrs old beautiful granddaughter 3 years ago to SUDEP. Our family is still so broken and I pray constantly that they will come to know the Lord as their savior and find the peace that I have in knowing ♫ It Is Well With My Soul , that I will see her again. Also to get the word out that not only can Epilepsy kill but there are some safety steps to take to help prevent or be alerted about this heart breaking seizure called SUDEP. Speaker Monitors & mattress motion detectors etc., to alert others in the house when you are sleeping alone that something is wrong. Our family only learned about this after she was gone, doctors don’t want to talk about it, but I will now always be an advocate for SUDEP so no one else has to endure the pain of losing a loved one. Here is a FB profile on her for those of you who would like the met my beautiful Grand Niece Jordan Fawcett. Praying for you all <3


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