Baher’s Story

Site created on April 23, 2014

Tribute video to Baher's testimony and life : 
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  http://www.indystar.com/story/life/home-garden/2015/06/21/indy-dad-loses-memory-independence-faith/29058633/
Baher Malek was admitted to the hospital Tuesday, April 22, 2014, after having unexplained seizures. He had been experiencing flu-like symptoms for a few days, and the doctors expected to arrive at a diagnosis of meningitis or viral encephalitis, but no diagnostic cause was ever determined after exhaustive tests at several institutions, including many lumbar punctures and a brain biopsy.  Diagnosis remains as best hypothesis:  viral encephalitis or a post infectious autoimmune encephalitis, possibly with parvovirus trigger. After 7 weeks in a medically induced coma due to continuous seizures (status epilepticus), during which time he sustained a brain hemorrhage,  on the backbone of God's grace using diligent doctors and a profound movement of prayer, Baher began to awake, breathe off the ventilator, and begin a long journey towards -  what we now know to be - a very limited recovery. These have been years characterized by frequent mental anguish and confusion, yet he never forgets to articulate the foundation that sustains a life: Hope in Jesus.  The miracle that  we have witnessed is that long days of mental toil and a continuous need for re-orientation are always rooted within a consistent  framework of love and concern for his family and precious Trust in the Lord.  We have many stories of how our Heavenly Father has provided for His children, even though it has been (and remains) so painful.   After months and years of hospitalizations, Baher still suffers from medically refractory seizures that require numerous sedating medications, complicated by amnestic syndrome. He lives with severe short-term and long term memory loss due to great damage to his hippocampus and temporal lobes which creates a baseline of  confusion and repetition.  Despite the severe TBI he sustained, his verbal skills are tremendous and faith is strong. His rehabilitation and healing remain a very dependent journey in God's good hands and will be complete when He finally sees His Savior.   Since 2016, Baher has been cared for at Spring Mill Meadows Nursing facility on 86th street where he maintains his wonderful sense of humor with bingo wins, visits from those he loves and practicing Christ-like  compassion for other residents as he himself receives care.  
Baher and Bess, have four adorable children: Clara, Benjamin, Zachary, and Theodore.
 
Thank you to everyone who has given to the family over the course of this journey.   Your generosity has been overwhelming, and the family is extremely grateful.  We are deeply thankful for the friends who continue to remember Baher and our family in prayer and are cheered by those who bestow visits on this dearly beloved  father and friend. 

Newest Update

Journal entry by Bess Malek

The activity of an odd looking animal will determine the outlook on spring. Or at least, that is the lore of February 2nd.  I have learned that in some parts of the world this day is known as Candlemas. Orthodox Christians in these countries have a tradition that a bear will awaken from winter hibernation, and if the bear meets its shadow in its confused and groggy state, it will get scared and go back to sleep; winter will be prolonged. 

For me, I will make few predictions but I will look at the hard grim ground. Dormancy. Death. Remembering. The day you don't forget. When I remember this day, meeting the shadow of death in my confused and groggy state, I, too, want to go back to sleep. 

The irony. The strange shape that this day - of the 365 available - should be that one for Baher which curved the arch of numbered days to an eternal intersection.   Indeed, it predicted a new stage of winter; collected the remains of a long long string of forgetting; the never ending loop that converged with finality here, February 2nd. 2023.  Groundhog Day. 

Why? This particular day? When a squat little marmot is given permission to speak for all that we long for.  This obscure holiday that wagers weather by the whether-or-not based on the shadowy profile of a rodent's belly & if it comes between light and a surface.  This day is wry & unserious, well-suited to humor and light subject matter; it is the sort of curiosity that is good for breakfast cereal conversation or the sort of thing you talk about at the water station at work. It is not a day of closing dignity. It is not a holiday on which one chooses to get married or light a unity candle.  It is not the day to die. 

It is the title of a movie where a man cannot escape the day. It is Bill Murray stuck in a time warp. It is a non-sense but regular day;  that in which someone might decide to take a turn through the carwash or sort socks. It is not the day anyone would choose to say the final goodbye.  Especially, after many years of repeating the same, same, same old, heart-splitting, hair-raising questions of confusion.  If a movie ended here, you would wince with the cheesy, inauthenticity. The trite obviousness. 

If you are stuck in a time loop, and it is time to die, you avoid this day. Aim for Arbor Day or New Year's. Presume on Labor Day if you must, or any old Wednesday will do. Something dignified or federal or plain ordinary. 

At least, that would have been my preference. 

But here it is - the grand finale, the ache of oddity, the ending that would be fantastic in a fictional tale but stings when it is truth. Therefore, I am ill-convinced that analyzing activity on the horizontal will cast any promising shadow of new life.
So, I look up.
 Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning. 

And amidst my painful questions that circle my head every day, the heavy burden of memory, there are also these critical ponderings: 

 Can you like Him spread out the skies hard as a molten mirror? Job 37:18 

I lift my eyes to the hills, whence comes my help?  Psalm 121 

The heavens declare the glory of God.   - Psalm 19 , Baher's favorite quote every time he saw the sky from his own Groundhog Day lived reality. He had a trained internal mind's eye, keen to look up. 

The huge dome of the sky is of all things sensuously perceived the most like infinity. And when God made space and worlds that move in space and clothed our world with air and gave us such eyes and such imaginations as those we have, He knew what the sky would mean to us." C.S Lewis, from Miracles 

And I sit here with the sometimes crushing knowledge of these intensely troubled, traumatic years that feel like too much to bear, and I ask the Lord for a place to set it down. I haven't quite figured out just how best to do that - a work in figuring that will take a long long time. and a few winter's hibernations. And maybe some spring picnics. Groundhog Day's in between.  And multiple shades of sky - infinite in scope, lighting up with mystery in wakeful dawn and blinking a shadowed shuteye at close of day. 

 

From Tim Keller's famous sermon,

"He is going to incorporate even the worst things that have ever happened to you. They will be taken up into the glory that is to come in such a way that they make the glory better and greater for having once been broken. 

No one puts this truth better than Dostoevsky. The Brothers Karamazov contains this fascinating passage:

“I believe like a child that suffering will be healed and made up for, that all the humiliating absurdity of human contradictions will vanish like a pitiful mirage….in the world’s finale, at the moment of eternal harmony, something so precious will come to pass that it will suffice for all hearts, for the comforting of all resentments, for the atonement of all the crimes of humanity, of all the blood they’ve shed’ that it will make it not only possible to forgive but to justify all that has happened with men.  “ …

I feel like I am looking into a deep abyss when he says that. I know what he means. What he is trying to say is that we are not just going to get some kind of consolation that will make it possible to forget. Rather, everything bad is going to come untrue. " - Tim Keller's message after 9/11. 

 

We thank our God - Father, Son & Spirit -- for Baher's testimony and life that teaches us to remember 'the truest true'.

And like a splendid day that never ends, the all-satisfying steadfast love of the Lord will not cease to be.         It is this prediction that  I will choose to remember today as the groundhog looks round for his pathetic little shadow.  

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