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Patsy Custis, Larry McClarey and Sudep

MarthaParke_Custis

The Father of our country, George Washington, was never blessed with biological children.  When he married his wife Martha, she was a widow, and she brought two children into their marriage:  John Parke Custis, who was four, and Martha Parke Custis, who was two, and who was called Patsy.  Washington raised the two children as his own.

At the age of eleven or twelve Patsy began to have epileptic seizures.  The Washingtons consulted numerous doctors and attempted endless cures, all to no avail.  Modern medicine was not yet even in its infancy, and anti-seizure medications were over a century in the future.  However, even then it was known that epilepsy was not usually a mortal disorder.  Patsy had frequent seizures but she came out of them each time with no discernible harm.

On June 19, 1773 Patsy was  at Mount Vernon talking to her brother’s fiancée, Eleanor Calvert.  Patsy went to her room to retrieve a letter from her brother who was away at college.    Eleanor suddenly heard a strange noise and found Patsy on the floor having a seizure.  Her parents were summoned and George Washington placed her on her bed.  Family letters describe Washington kneeling at Patsy’s bedside, tears streaming down his face, praying for her recovery.    After only two minutes, Patsy died.  She was buried the next day, George writing to his brother-in-law, that his “sweet, innocent girl had died”:    [Patsy] rose from dinner about four o’clock in better health and spirits than she had appeared to have been in for some time; soon after which she was seized with one of her usual fits and expired in it in less than two minutes without uttering a word, a groan, or scarce a sigh. This sudden and unexpected blow … has almost reduced my poor wife to the lowest ebb of misery.

This is one of the earliest accounts of Sudep (Sudden Unexpected Death in Epilepsy).  The mechanism by which Sudep causes death is still mysterious.  It strikes young people, those between 20 and 40 are at highest risk, who are otherwise in good health except for their seizures.  It often occurs at night, and is usually unwitnessed.  The victims are often found in a prone position on their beds, or near their beds.  It is rare, striking one out of 1,000-3,000 of epilepsy sufferers each year.  In order for a death to be considered to be Sudep there can be no other explanation for the death.  The mortality figures on Sudep are uncertain because death certificates often do not indicate Sudep as the cause of death.  It is estimated that some 45,000 Americans die from Sudep each year, which puts it ahead of vehicular accidents by 13,000 for the year 2011 as a cause of death.  Go here to learn more about Sudep.

I was ignorant of Sudep until May 19, 2013.  My son Larry was going to graduate from high school that week.  Due to his autism he was able to stay in special education until he turned 22 on September 5, 2013.  Thus, this was his last year and he was due to participate in commencement along with his younger sister on May 24.  His last day of school had been during the morning on May 17.  To mark the day I took my bride and Larry and his brother, who was home for the summer after finishing his junior year at the University of Illinois, off for a movie and supper in Bloomington.  We saw Iron Man 3.  Larry always enjoyed super hero movies, something he shared in common with his Dad.  The next day Larry and his brother got their hair cut and we spent the rest of the day at home.  Larry was in good health, as he almost always was.  Except for his occasional seizures, Larry throughout his life enjoyed very good health.  He was tall and lean and in good shape.  His seizures we thought were under control with his seizure medication, Larry having on average perhaps one or two seizures a year, always at night during hot weather.  After a seizure he would invariably fall into a deep sleep until morning.

The evening of May 18 was completely typical until after I went to bed.  I gave Larry his anti-seizure medication just before I and his mother turned in.  I was told later by his brother that he came up to the room that he shared with his brother at around 11:30 PM, about an hour after I and my wife had gone to sleep, and Larry was having a seizure. It appeared to be a normal seizure and his brother stayed with him until it passed and Larry fell into a  deep sleep.  Then his brother turned in.

At some point Larry awoke and went down stairs to fix a snack of skittles and milk.  I found both out when I went down stairs in the morning.  (Try as I might, Larry would usually forget to put the milk back in the refrigerator.)  Larry then went back to bed.

Around 2:15 AM I awoke to the sound of pounding.  We had a tower floor fan on in our room, which we purchased just the day before, which muffled the sound.  I was not fully awake and at first I thought the sound was someone pounding on the door to the house and the thought occurred to me that perhaps Larry had gone for a midnight stroll and that a neighbor had brought him back.  Then I thought perhaps it was thunder.  It never occurred to me that the sound was Larry having a seizure.  After the sound ceased I fell back asleep almost immediately, and till the day I shut my eyes in death I will bitterly regret that I did not get up to investigate.

My wife and I got up around 4:00 AM, our usual time for rising.  After breakfast I went up stairs at around 6:15 AM to do Larry’s “Daddy reading” with him.  This was a morning ritual that Larry and I had been following since he was a small boy, where Larry would read a page or two from a book to me.  His brother had already risen and was in the bathroom.  Larry was lying on his bed with a blanket pulled over him, his normal manner of sleeping.  I sat down on the floor and said, “Good morning Lad!”  He didn’t move.  That didn’t alarm me as sometimes I had to awaken him.  I pulled the blanket away and saw Larry was face down on his bed.  I realized instantly that he was dead.  I pulled him over and felt that rigor mortis had set in.  We called 911 and sent his brother to fetch our parish priest who came and gave my son the Last Rites.  I was thankful that I was emotionally numb during this time period and was desperately hoping this was a nightmare from which I would awaken.  It was Pentecost Sunday.  My mother had died on Easter Sunday, 1984 and my Father-in-law died on Palm Sunday 1997.  Larry had difficulty speaking due to his autism and the tongues of fire of Pentecost suggested to me that this was ordained by God, along with the fact that Larry had completed his schooling and that God had work for him to do.  I had often told my kids the story of the Questing Beast from the tales of King Arthur and how that quest began on Pentecost.  When they were younger as we were driving to Mass on Pentecost I would offer them a dollar if they spotted the Questing Beast.  The thought occurred to me that Larry had now gone after the Questing Beast alone.  Such musings kept at bay the intense grief that I needed to hold back as I and my family made arrangements for Larry’s funeral mass and burial.

An autopsy was performed on Larry and revealed no physical problems that led to his death.  His heart was in excellent shape as were his brain, lungs and all other vital organs.  His death was a classic case of Sudep.

Because death from Sudep is rare among sufferers from epilepsy, a debate exists among doctors as to whether it should be discussed with patients and their families.  I say yes.  Even if I had known about Sudep it is entirely possible we would have done nothing differently with Larry, the risk of death being so slight.  On the other hand it is possible that I would have purchased a seizure alarm.  In cases of Sudep attempts to save the lives of people going through it have been unsuccessful in the few cases observed, but I would give everything I possess if I could somehow go back in time and have gone to Larry’s aid when I heard the pounding that dark night.

At any rate I hope that anyone who has epilepsy, or who has a loved one who has it, will become informed about Sudep.  I wish with all of my heart that I didn’t acquire my knowledge until it was too late.

LarryMcClarey2012

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Donald R. McClarey

Cradle Catholic. Active in the pro-life movement since 1973. Father of three and happily married for 35 years. Small town lawyer and amateur historian. Former president of the board of directors of the local crisis pregnancy center for a decade.

18 Comments

  1. Dear Donald,
    The return to possibilities and circumstances unknown in your beautiful heart begs me to remind you of the Awesome Grace that surrounds Larry at this moment. A grace that any loving father would not wish his cherished son to be without…even for a second.

    On Sunday the 7th at 9:15am I was performing CPR on a 56 year old Co-worker who had collapsed due to a massive heart attack. While praying with her husband in the CCU last night an acceptance of Gods design came over him. He said; ” She was always His.” HIS.

    They, we, us. We are His, and graced to get to know love and share in His children while we are on Earth.

    My Co-worker will go off of life support today. A harvest team is coming up to give Life to waiting families in need of human organs.
    I do not have the families permission to share their names, however if you could pray for them today…it’s going to be a rough one for them.

    Donald. Peace.

  2. “I do not have the families permission to share their names, however if you could pray for them today…it’s going to be a rough one for them.”

    Prayers on the way Philip.

    In regard to Larry I sometimes feel his presence. At his funeral mass I had the strangest wave of joy and peace sweep over me and I suspect that was his way of giving me a very small taste of what he is experiencing now. That knowledge sustains me.

  3. Donald you have my heartfelt condolences. I’m sure that your sorrow and that of your family is matched only by Larry’s current joy. I am extremely fortunately that with 5 after me and 10 after them, I can only imagine your pain. May God’s peace and joy sustain you.

  4. Thank you Steve. I have no doubt where Larry is. My sorrow is my missing him, and my joy is my memories of him and knowing that I will see him again, God willing, in a land that knows not autism, seizures and death.

  5. Your story brings tears to my eyes. You lived a faithful daily love that Larry received and reciprocated. God bless you. That daily sharing is over for now– I sympathize with you, your wife and family. I am glad you get to feel joyful, and his presence for comfort.
    Through your writings on TAC your readers know a bit about your thoughts and priorities. Your story today is of grace in anguish and reinforces our faith. You are generous to help others who love in similar circumstances.
    Take great consolation in your confidence that his soul is saved, that he is living the blessed eternal life we all hope for our children. The same is apparently true for the co-worker of Philip. That confidence of salvation is everything.

  6. Anzlyne.

    My co-worker was a beautiful giver.
    She would ask the deceased family members if she could have one of his/hers favorite article of clothing. They would curiously give her a blouse or jacket. Then a week later, she would give the family a teddy bear she made out of the deceased clothing.
    She also made beautiful Easter eggs out of sugar and decorated them with thoughtful Crosses and faux gems.
    Her kindness and love will be missed in our Nursing home where she worked for three years.

    My friend/nurse and I gave our all on that fateful morn. When the EMS arrived we had 16 minutes filling her lungs and circulating her blood as best we could. The EMS worked another 15 minutes until finally a pulse was attained. We had high hopes however things did not go well.

    No one knows how long she was unconscious prior to being found cleaning a residents room. We gave her our best.

    Now some beautiful families will have had prayers answered by receiving her heart, her organs. I hope that the family will find Peace in that final offering.

  7. Don, can I just say ditto to anzlyne? Your family is still in our prayers and we’re carrying a heavy heart for you.

  8. I find it fascinating that a sick young man like Larry, having had a capacity that most of us would call diminished, can inspire more holiness, more love than all the theologians in the Church combined. There is nothing diminished in what you described above, Donald. Larry’s witness will now bear the fruit that God has foreordained. Romans 8:28-30.

  9. Donald.
    As my wishes for you on the morning of Pentecost were for healing and peace, so too for today.
    By know means did I wish to belittle your broken heart. Sincerely our acts for others in need can become a healing balm for our soul.
    Your prayers for my friends family has that two fold benefit. That is not the intent however the love and mercy of God is undeniably infinite. My hope is that you have experienced the peace your prayers have offered to my friends family.
    Larry indeed is a Saint and working in souls around the world.
    Blessings.

  10. What a poignant and heartfelt post and so characteristic of you to think of others in the midst of your grief. What-ifs are natural after such devastating events but I hope you will soon accept that if it had been God’s plan for you to respond, you would have responded. What sustained me when my wife died of breast cancer in 2004 was that, like Larry, she is in a better place and that the loss as great as it was, is ours not hers since she is in heaven.
    I can attest that you will frequently feel the peace and presence of Larry just as i have of Colette who is never far from my thoughts and. I believe, watches over me..
    One outcome of her death was my taking fa few years to write Colette’s Story about this wonderful woman for family and friends. Many were grateful saying “I laughed, I cried” in their notes of thanks.
    Your family can be assured that you are in the daily prayers of many.
    Best,
    Peter

  11. My prayers for Colette Pete. Love is God’s great gift to all of us and it transcends death. Several years ago I had a client tell me that she spoke to her dead son every night. She asked me if I thought she was crazy. I told her that I was confident that she was entirely sane and that when you really loved someone you didn’t let death stand in the way of continuing to love him in the next world.

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