SANAD blog

A month ago, my dearest, my best friend Sammy passed away.

His passing brought a heavy guest into my life. I will not introduce you to this guest because you are all already familiar with him. He has visited you too every time you lost something you cared about.

This guest is grief. And I see him as a big, bad bully.

Starting from day one, my bully acts like a spoiled child. He demands my attention, my time, my energy.

My bully makes fun of my hobbies and dreams. He makes Disney movies seem stupid. He makes colors seem annoying. And he makes isolation comfortable.

I was trying to ignore my grief by running away from the memories I had. But my bully demanded attention, not for selfish reasons; he demanded it because those memories were not meant to be ignored.

It’s as if when we first meet someone, we enter into a silent agreement with them that whoever stays here has to tell the world about the person who left. We don’t speak of it, it’s there by default.

I was not meant to betray that agreement; honoring the memories we have with someone is what keeps them alive. It’s what keeps humans remembered and loved throughout the years. There is naturally a part for us to keep for ourselves. The other part, however, is not for us. It is for the world to see, for the world to know about this person who was here.

I will honor our agreement.

Sammy is one of those people you meet once in a lifetime. He had traveled to all sorts of different places; you’d think nothing would impress him anymore. But everything was an adventure for Sammy; going to a new mini market was an adventure for Sammy! Walking with him was an adventure on its own; if he passed by a tree he could tell you it’s common name, scientific name, what fruits it bore, its country of origin, and a bit more.

He took pictures of every flower, every tree, or old weird-looking building he encountered. He loved books, and I will not try to guess how many books he has read in total, but it seemed like he had knowledge to share about everything; from laws and wars and Shakespearean English to Science and Biochemistry and the proper way to cook fish.

He saw joy in helping anyone around him, from the smallest actions like almost carrying a kid he saw in the park struggling down the stairs in his roller blades, to those that needed lots of effort, like giving free English tutoring to all the kids in the village where he was staying, because he thought they weren’t getting enough. In both and all scenarios, the result was the same; he would offer his help happily, then his modesty would speak up and say “Nah, it was nothing.”

In his own beautiful way, Sammy is a contradiction. It’s funny how he could make you see how this world is everything and nothing at the same time, how he took nothing too seriously yet everything meant something special to him, how love and war fascinated him in the same measure. In this sense, he gave a new meaning to everything around me, he gave me a new set of eyes with which to see the world. Now I see it the way he saw it; beautiful and broken all at once

Because of my bully, you now know a tiny bit about Sammy.

I was still fighting with grief, trying to figure out what makes him so big and bad. What makes him a bully. And I realized that he forces us to face the unknown that we fear facing.

We as humans hate dealing with the unknown; it makes us feel powerless not knowing what to expect. And death, for us, is the ultimate unknown. We never REALLY know what death is like, so we assume the worst and turn our backs to it. And grief, being the bully that he is, grabs us by the shoulders and pins us in front of this ultimate unknown and it stands there yelling “deal with it!”

So I had to deal with it. I got to know death better, researching the physical and the metaphysical, the spiritual and the mental and all in between; and you know what? It doesn’t seem as scary, hollow, or dark as I thought it would be. It’s a beginning of something new. I read how blissful our loved ones can be when they cross over, and how blissful it would be when we meet them again. I read how shedding this body we inhabit, when the time comes, can be a huge relief. I read how our loved ones are still around us, just in different, more profound forms. I still don’t know for sure. But death does not seem as final as I thought it was.

Despite that, I was still fighting with my bully when I stumbled upon a quote that said “grief is love with no place to go”. Of course. This parent or this friend, this sibling or partner whom we have lost, we have loved them.  And we think that just because they aren’t in front of us to receive that love then we should stop expressing it, we hold it in and it doesn’t go away. It just gets bigger and bigger and in the end it turns into rage and resentment, and it makes us miserable.

Well if that’s what grief really is, then the solution should be quite simple don’t you think?

We just have to find places for that love to go. Our loved ones shed their physical shell, and now they are down to their core essence, a spirit, an energy. The love we have for them is energy as well, and so it only makes sense that if we release that energy into the universe it will reach them wherever they might be. My bully just had to teach me how to express this energy in different ways than before.

We might not be able to give them flowers anymore, but we’ll plant flowers in their honor. It’s an act of love towards them as well as an act of love towards our surroundings. The good things we can do to that end, are endless. Now, instead of directing our feelings towards one person, we are directing them towards everything. This is how pain opens a door to beauty.

Till now, my bully offered me the gift of honoring my memories, the gift of being at peace with death, and the gift of seeking a life that will ensure we have lots of interesting stories to tell our loved ones when we meet them again.

All these gifts, and guess what? I still hate him. He’s still a big bad jerk. And he will probably remain a jerk for as long as he stays with me, and that is forever.

They never really go away, those heavy guests. Their visits become less frequent maybe, but they’re still there in the background, passing on their bittersweet gifts.

I hate him. I’m still at war with him, but I admit, in those rare glimpses where I can see the truth of the gifts he has given me, I understand how sometimes, only sometimes, our big bad bullies can be little misunderstood blessings.

Here we go again.  At least twice a year, we would go through screening for different diseases.  Sometimes, it was the heart, that pain in the chest, was it a muscular issue or a serious heart problem?  The pain in the intestines, was it colon cancer or was it a simple hiccup that didn’t come out right?  A battery of tests later, we would put it behind us till the next episode.  It wasn’t that Khalil was a hypochondriac.  As a doctor, and a very good one at that, he knew first hand that our body gave us warning signals when something was wrong and that we had better follow up on them.

This time around, it was bloating and abdominal discomfort.  Khalil came back from a yearly trip to the States filled with smoothies to relieve the discomfort, and descriptive long distance calls describing the usual symptoms.  So it was the customary doctors’ visits and the usual CT scan.  I decided to go with him for the CT scan, if only to maintain my impeccable attendance record.  In the waiting room, Khalil had to down the usual unpotable prep but not without making jokes about it.  He kept offering everybody in the waiting room at least one cup of the dreadful drink and would generously insist, making us all laugh.  He even tried to sell me some of it.  I guess he didn’t expect what was in store for him.  Finally, when all the liquid was downed, with a great sense of accomplishment, he went in for his CT scan, mostly expecting that like all the previous times and false alarms, he would come out of this with a minimal sentence, maybe a gall bladder or a cyst.

It was the middle of the week and classes were in session so I capitalized on the time he was gone to see to my batch of corrections.  No time to waste here.  Commitments.  Grading. The world would come to a halt if I did not get to work.  A hamster programmed into the American production culture.  A minute wasted is a minute that cannot be recovered.

Khalil came back and said that the x-ray technician thought he may have seen something suspicious and wanted to explain it to him.  He asked me to go with him.  As a doctor, he had the advantage of getting an immediate reading of the CT scan.  Typically, Khalil would have heard out the technician and then informed me of what he had said.  Not this time.  We went into the room adjacent to the CT scan where Khalil had been lying down a few minutes earlier as his body was exposing the dreadful evil lurking inside it, defining the rest of his life, etching the final chapters of an end he was not ready for.  Khalil loved life, loved living, and was worthy of living.  The technician pointed at the abnormal imaging and described what he saw, the bare facts, and suggested we show it to the doctor.  Again, the advantage of being in the inner medical circle was an almost immediate visit to the doctor.  I was still not worried.  Hadn’t we done this so many times before?  Certainly it was nothing.  Certainly the usual over-cautiousness.

We went to see the doctor with the expectation of a biopsy as the next step. A biopsy could be positive or negative.  There was an ‘either or’, not a ‘certainly’.  In a matter of fact way, the doctor, who was also a friend, spelled out the verdict.  Pancreatic cancer.  No need for a biopsy.  As clear as the sun.  as final as it gets, no reprieve.  Khalil excused himself abruptly.  “Doctor what are you telling me?  What does this mean?” I asked.  Why do we ask questions that we don’t want to hear the answer to?  Nothing could be done.  It was bad.  Very bad.  No ‘either or’, no reprieve.  All of a sudden the world went blank and life would never be the same again.  Khalil had suddenly shifted from 100% doctor to 50% doctor and 50% self-deceiving patient.

Take us back to when we didn’t know.  Take me back to when he didn’t know.  Take me back to when my main role was protecting my kids from what I then thought were impossibly difficult experiences. Take me back to when it wasn’t something that could happen to us.  Take me back to when nothing was final final, when things could always be fixed and plan B was always an option.  To when it was simple but it seemed overwhelming.  I didn’t even know how overwhelming overwhelming could be.

Oncologist.

Chemotherapy

“Hit me and hit me hard.  Give me the strongest protocol.  I want to live,” he said.  And the cycle of chemotherapy sessions began.

Came the time when the disease took over, much as he fought it, when the hospital visits were becoming more interconnected and the beeping of the Baxter infusion pump measuring our life in the intervals between beeps.  And I thought that was overwhelming.  I still didn’t know what overwhelming was.

The time for the big questions came.  Hospital stays or hospice?  We are made to believe that giving the patient the best care is to keep him safe at the hospital.  Isn’t that where emergency service is available?   Isn’t that where you press the button and the nurse rushes to your service? Yes, doing right by Khalil would be to provide him with hospital care, first class services.  Taking care of him at home definitely would not offer him all the hospital could.

How wrong.

When someone is suffering, the hospital becomes a prison.  You want to do your time and be on good behavior so that they might will let you out early… you wouldn’t go there of your own free will.  You don’t have the comforts of home.  Would Khalil prefer a hospital nurse that happens to be on that shift, no matter how humane she may be, to provide for his needs, or the consistent sweet caring angelic face of Zeinab Zebara?  Would Khalil prefer to be in a hospital bed or in his own bed, in his comfort zone his family giving him that sip of water, that nutritional ice cube when food was no longer an option? Hospitals cure you and you go back home.  Here was no cure.  The hospital wasn’t going to fix Khalil and send him back home.  Our job now was to concentrate on Khalil’s comfort and needs and that is what hospice services provide, be it medical, emotional, psychological, equipment, etc.

But in our culture we do not talk about death.  It is the unmentionable skeleton in the closet that we fear, the elephant in the room, so how was I to introduce Khalil to the possibility of hospice services?  Wouldn’t that be telling him he was dying?  I can’t explain why the introduction of hospice was not as difficult as I thought it would be.  Maybe it was because Khalil knew and loved Lubna Izziddin, the founder of SANAD.  Maybe it was because Khalil’s medical expertise informed him that it was wise to do so.  SANAD gradually and non-invasively became part of our daily life, providing for all our needs.  Together, our job was to relieve or rather alleviate the symptoms, to hold his hand and make him feel he was not alone in this, that we were all with him, carrying him through to try to improve the quality of his last days.

Peace

Dignity

Comfort

As a person who would have previously opted for hospital care, the decision came naturally, organic product of the development of the disease.   It was normal.  We realized as a family, that with SANAD, Khalil could spend his last days in the comfort of his own home, as peacefully as possible under the circumstances, and most importantly with dignity.  Yes, with dignity.  Cancer is a mean disease that pounces on its victim unannounced, strips him of the familiar, disrupts, disqualifies, un … a disease of dis and un.  A series of negative prefixes

dis-,as in discomfort

il- as in illogical

im as in ……………..

But the dignity of the dying should be among the untouchables, where there is no room for the dismantling that cancer unrelentingly engineers.  Hospice care provides that for the terminally ill.  For the family, it leaves them with the sense that when merciless cancer strikes their loved one, they could make it, not better, but less bad by caring for their loved one.  It relieves some of the pain of parting that at least we could give them that. That cancer couldn’t un or dis or im.  And that is what a hospice service affords.

It’s called soul searching…
Look beyond the loss of a sense,
Search for the core; the sense of being,
Search for your soul,
Find it and keep it,
I promise it will remain and it will last long after all senses have died.

Today you are here, I am here,
Don’t go, just yet.

My name is Zane.  I am a confessed workaholic, coffeeholic and a recovering family member of a cancer patient.  This blog is not about my work, nor about my love for coffee but my experience with nursing my husband through his pancreatic cancer.  There is much I can’t share because it belongs to my deceased husband but there is much more I can share.  Some of it you may find useful.  Some of it you will find a useless exercise.

Why, you could ask, would I breathe new life into memories that are better left buried in the hurtful past?  The truth is that cancer is the world’s number one horror film.  It never leaves your memory but surfaces when you least expect to.  Sometimes, even the Artansia flooding the flower shops on mother’s day bring back not just a memory but a smile, or maybe a tear because the whole family also got Artansias making yours not so special, or maybe a غصة because the person who used to bring them has been so wronged by this horrifying disease.  It never goes away because there are infinite versions of the Artansia.

But Artansias bloom in spring and are a symbol of rebirth and so we must continue living our lives as best we can, making new memories, new shared histories, and new futures.

So the reason I am digging up memories better left buried is that we all cope in different ways.  This is my way of putting it to rest.  Of coming to terms.  Of putting out a hand to those who are nursing their loved ones through their most difficult experience  and to those who are themselves facing the final curtain.  If my experience gives any of you some respite, a feeling of shared histories, a shoulder, then my life would have more meaning.

Visited by an Angel

“You can do it Khalil.”  “You’re doing fine.”  “You’re so strong, you will beat it.”  It was all my attempt to make Khalil fight and cope even though I had already read up on pancreatic cancer and knew that it was a terminal kind of cancer.  By the time you discover it, it’s usually too late to medicate, unless you are among the lucky few.  His doctor told us from day 1 that there was no hope.  It’s all downhill from here.  But for some reason, I felt I needed to encourage him, to help him fight back and have hope.  I often heard that your temperament or نفسيه was a decisive factor in recovery and that the right attitude, being optimistic, fighting, would make that nightmare go away.  Was it Louise Hay who actually recovered from vaginal cancer in six months through positive thinking, affirmations, and restorative nutrition?  One day, though, my son told me, “Mom, I am not sure this is a good idea.  You are putting too much pressure on him.”

Baffled, I asked, “pressure?  How can that be?  I am helping him fight back or at least to cope better.”

“But that’s not what happens,” he answered.  “When you do that and they don’t get better, they feel they have failed you, let you down, disappointed you.”

OK, I thought to myself.  That’s not good.  My effort to make things better was actually making things worse.  How was I supposed to know?

It then dawned on me that my friend Lubna Izzidin , had been through cancer in the family.  I called her up hoping to get tips on the dos and don’ts of supporting a cancer patient.  Little did I know that I would get much more than I had bargained for.

Lubna, and for the life of me I hadn’t thought of that when I came to ask for her advice, was also the founder of SANAD, a hospice, or more of a hand that helps not only the cancer patient but also his family in every way you can possibly imagine.  But more on Lubna and SANAD later.  I want my first blog post to be about Zeinab.

Zeinab is a full time nurse with SANAD.  The first time I met her, I didn’t know what to expect.  She was going to help us with the nursing.  But Zeinab did much more.  Soooooo much more.  You could put your loved one in the world’s best hospital that money could buy, but it’s not the money that makes the patient feel supported, that you will hold his hand through this, that you will understand and care.

When my husband’s veins were drying up and Zeinab knew they were drying up, she would hold his arm in her lap.  She would gently caress it, love it, apologize for her needing to hurt it…. And she would prick him to insert the needle.  No blood would come out.  She would remove the needle.  Go back to caressing his arm gently, again apologizing for any hurt.  Her eyes would be focused on his arm as if they were too guilty to look Khalil in the eyes.  Patiently waiting, as if for the memory of the prick to go away.  Again, gently, she would try again, apologetically inserting the needle.  No blood.  Zeinab would hide her teary eyes, not wanting Khalil to notice how disturbed she was.   And she was devastated.  Ten minutes later, she would try again…………….. and again, each prick costing her offending her essence to the core.

We have a beautiful house in the mountains, Sofar, Khalil’s kingdom and my piece of heaven on earth.  Throughout his sickness, he tended to the garden and wanted to spend as much time he could there.  But now he was hooked to an IV pole and the bags of medicine needed to be changed and the doses of medicine injected into the new bags.  That was  Zeinab’s job.  No worries, Zeinab would drive all the way to Sofar and with an angelic smile make his time in Sofar possible, and on weekends.

“Zane, how are you holding on? Are you ok?”  Her eyes hovered over me and my family as if all she did for Khalil were not enough.  She would take me aside, hold my hand, look me into the eyes reaching all the way down to the bottom of my consumed soul that was disguised by a smile, and she would see. She would understand and say the magical words that would balsam my exhausted body and soul.

The same thing happened with my three children.  Yes they were adults and behaving like adults so as not to add to my heavy load.  But when faced with the looming loss of a parent, adulthood becomes a façade.  My daughter would coordinate Khalil’s medicinal needs with Zeinab, and they would plot behind my back.  Yes, she would tell my daughter things she wouldn’t tell me and built a bond with her by empowering her to take charge, because that is how my daughter copes.  That’s what my daughter needed to do.

She explained things to my younger son in line with his personality and tended to his needs as she did to all of ours.  As for my elder son, a doctor living in the States, she would patiently discuss what was being done, where we were at, and where we were going as she would with a doctor, but also comforting him when there was need to.

In the final days, Zeinab prepared us telling us there were phases that a dying patient goes through, what is also known as “dying trajectories”. She took us through the trajectories which are not the same for every patient.  But she knew that that the end was near, for example, when his breath turned into gurgling chest sounds, an internal hubble bubble.  Towards the end, Zeinab and Lubna hardly left our side.  Hardly left his side, sitting in a chair next to his bed.  And when his soul finally left his body, tears rolled down her cheeks.  She had not only lost a patient, but she had also lost a family member for by this time, she was a part of our family that we all depended on, leaned on.

Zeinab helped us clean him up, put clean clothes on him, before we let the rest of the family back into the room to say their goodbyes.  She would not have her own be seen in anything less than a respectable appearance.

The saying goes that when God closes a door, he opens another one.  I say that when God puts you through unbearable suffering and pain, he sends you an angel to see you through it all.  God sent Khalil Zeinab.  God sent us all Zeinab and SANAD who were both our سند, because without them Khalil could not have died in the comfort of his home surrounded by his family and loved ones, and Zeinab was among the loved ones.

In the corner of her one-room apartment, Mona sat upright. Beneath the folds of her weathered, yellowed face, her eyes burned into a single point on the wall invisible to us. I knew that she had mustered all of her energy into waiting. Her daughter had passed her courses and was awarded her degree, but it would be months before the graduation ceremony. And patience was an endurance that  Mona could no longer afford.

So I called the photographers, and I arranged for her graduation robe. The daughter’s degree in her hand, we held the ceremony in the one-room-apartment-waiting-room-no-longer. And on that day , Mona needed to wait no more, and the daughter asked her to make her way.