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Jesse’s story – Part IV

24 Mar

Jesse was a high school friend.  We lost touch after he left town at the end of Grade 12.  Years later, we reconnected through Facebook, and I learned that he had developed epilepsy shortly after we had lost touch.  Jesse died this past November.  This is his story, as told by his mother Léa.  Part IV is the final installment of the story Léa wrote.  To read the rest of his story, follow these links:

I have grieved and grieved, and at the same time told Jesse not to let my grief hold him back from the joyful power he now has.  And he really showed that power in the first week.  On the day we heard of his death, it began to rain and blow.  On the Friday when we went into Halifax to empty his apartment of his belongings, the wind was so strong that flights were cancelled at the airport and it poured rain all day.  That morning, our phone line went out and stayed out until the following Monday night.  On the morning of the wake, there were over 12 trees down across our road, and neighbours had to go out with chainsaws to top them so that people could get here.  And on Sunday, the power went out for 16 hours.  Caitilin and I looked at each other and said, “That’s Jesse, moving his hands across the universe and stirring everything up, just to show he can.”I’ve been working very hard to make this a beautiful grief.  The pain and the peacefulness continue to mix and balance each other.  In the early going, I read a wonderful essay by a well known Buddhist teacher, Joan Halifax, who said that when her mother died, she had to make the choice either to be a “good” Buddhist, staying calm and philosophical, or to scour out her heart.  She chose to scour out her heart, and so have I.  But all through the scouring I have had moments, then hours, then days of complete peace and even joy.  I have believed, for many years, that each of us has many lives, and that after each life we choose what the next life will be, in order to learn the next set of lessons we need on our journey toward enlightenment.  So I know that Jesse chose me as his mother, and chose the trial of epilepsy, and chose to meet Moss before his death, and chose to die young.  And I watched him learn lesson after lesson, and teach us lesson after lesson, as he lived and died.  I can’t regret a moment of his life, or even his death, though I will miss his physical presence for as long as I live.  One night a few weeks ago, I couldn’t sleep and lay in bed with my heart burning in pain.  I was crying because I didn’t know how to untwine all the deep roots that Jesse had put down in my heart.  It took me until 3: 30 to realize that I don’t have to untwine them.  Those roots have nothing to do with his body: they are his love for me and mine for him, and they will stay in my heart forever.  My heart is now the place he inhabits on earth.

I don’t want to end with my grief, but with Jesse – the wonderful man, friend, brother and son that he was.  Jesse was brave and kind; he loved deeply and openly; he wrote haunting poetry, made lovely wooden gifts by hand, and drew a series of amazingly graceful pictures of a person (half man/half tree) whom he called “the dancing man”; and . . . he was incredibly funny and loved to laugh at life.  One of his Facebook profile pictures, which he put up during his time as a carpenter, was this “Bob the Builder” send-off that shows Jesse at his lightest:

On the evening of Jesse’s wake, at Caitilin’s suggestion, our family watched two movies in his memory.  The first was an animation of The Man Who Planted Trees, the short book by Jean Gionno.  As IMDb says, it is “The story of one shepherd’s long and successful singlehanded effort to re-forest a desolate valley.” Jesse adored it, and I believe he did the same thing as the shepherd – he took what could have been a desolate prognosis and transformed it by planting one seed of beauty at a time.  When I think of Jesse in the place between lives, I see him inside a picture I found among his Facebook photos.  It could almost be one of the glades planted by the shepherd, and Jesse tagged the photo “feels like home”:

The other movie we watched that night was The Life of Brian by Monty Python, which was probably Jesse’s favourite movie.  For those of you who don’t know it, it is an irreverent and hilarious take on the life of Christ.  As IMDb says, “Brian is born on the original Christmas, in the stable next door. He spends his life being mistaken for a messiah.”  In the end, Brian is crucified, but as he hangs on the cross about to die, he and the others on crosses burst into song, with “Always Look on the Bright Side of Life”.  That is just like Jesse; he looked at what life had given him, and sang in the face of it.  When we watched the movie that night, we all sang along.  Maybe you would like to as well:

I want to thank Léa for sharing Jesse’s story with us.  It’s such an important story to me.  I hope you enjoyed getting to know Jesse a little bit, and I hope you learned a little bit about epilepsy and the way it can change a life.  I have a few more things to say before the end of Epilepsy Awareness Month in Canada, but for now, let’s just live with that cheerful tune in our ears.


Jesse’s story – Part III

14 Mar

Jesse was a high school friend.  We lost touch after he left town at the end of Grade 12.  Years later, we reconnected through Facebook, and I learned that he had developed epilepsy shortly after we had lost touch.  Jesse died this past November.  This is his story, as told by his mother Léa.  This is Part III, the part most difficult for me to post. If you’ve missed the earlier parts, here are the links so you can catch up:

Then Jesse had the seizure and accident in September.  He seized on the basement stairs in his apartment and fell back onto a concrete floor.  He had hairline fractures in his spine, a fracture in his ankle, undoubtedly a severe concussion.  The hospital cut his clothes off him, kept him long enough to do some tests, and then sent him home to his third-floor walk-up at 4:30 a.m. with no crutches and only one painkiller.  I rushed in to Halifax, took him back to the hospital that afternoon for clarification about what he needed to do, and called his neurologist to tell him what had happened.  He said that Jesse had been out of touch with him, and booked an appointment to see him again (in almost 6 months, the earliest he could do!); but he upped Jesse’s meds in the meantime, saying that they could do better than 4-5 seizures per year.

I brought Jesse home to my place to recuperate.  He was so hurt: on crutches, in a lot of pain, and worried about whether and how well he would recover.  And he hated to be lying around after having been so active.  But we had a great visit, with lots of talks and games; and one day, we went through the box containing all the pictures he had drawn, and notes and cards he had written to me as a child, his report cards and music festival reports  — all the little treasures.  It was so much fun to see these items help him “remember” parts of those early times, and I filled in the blanks with the stories he had forgotten.  He also got to spend long stretches of time with Moss.  My heart just swelled to see the depth of the love in his eyes as he held his tiny namesake.

Sometimes the days were long for him, especially when I was at work, so I managed to get an Internet router hooked up so that he could stay active on his computer.  When he could, he returned to Halifax and soon after went back to work.  His boss encouraged him to do partial days, and his whole crew was very helpful during that time.  He was still in pain, and was having some headaches, though he minimized them to me.

When I went into Halifax on October 27 for a meeting the next day, I took Jesse out for supper to our favourite Thai restaurant and we had a great meal and long talk. He had just been laid off for the winter (as expected) but his boss had made sure he had enough hours for EI.  He was full of news about his roommates and the ongoing drama there.  But he let slip that he had begun having fairly frequent migraines.  We couldn’t be sure whether they were a side effect of the increase to the Keppra or a lingering result of the last fall.  I suggested he call the neurologist about them right away and he agreed that was a good idea.  I drove him home and we had a great long hug outside his apartment — and that was the last time I saw him.

The following Tuesday morning, we got the news that he had died.  A few hours later, as I stood weeping in my bathroom, trying to get ready to go to Halifax to do whatever had to be done, I was apologizing to Jesse, saying, “I’m so sorry Jesse, I know I shouldn’t be crying.  I know you’re finally free and you’ll never have to seize again.  But I miss you so much”.  And suddenly his spirit was there, leaning over me with his arms around me in one of his amazing hugs, and he said, “It’s all good, Mom”. And we stood there for the longest time, and then I could go on.

The next few days were an incredible roller coaster of shock, agony and automatic actions.  I had to go to the Medical Examiner’s office, where they had done an autopsy.  I learned that Jesse had died a few days earlier (we’ll never know exactly when), but that he hadn’t been found by his roommates until Monday night.  The ME’s office hadn’t been able to determine a definite cause of death, and retained his brain for further examination.  We don’t expect to hear back from them before New Years, and even then there will likely be no official cause of death.  But Jesse was found face down on his bed, and the likelihood is that he seized, fell on his face into the covers, and couldn’t breathe.  It will have been quick and he will not have been conscious.  For days, I kept re-playing the movie of his death in my head, so hurt that he had died all alone and no one had known; I kept trying, in my dreams, to catch him and turn his head, and talk him through it as I had so often.  Then I realized that none of that mattered.  All that mattered was that that my wonderful son was gone; and at the same time I was filled with the most intense grief and the deepest peacefulness about his death.

We made the arrangements for his cremation, wrote his obituary, and put up the profile message on Facebook.  And the messages poured in for over a month. People we hadn’t even known Jesse had known (librarians, receptionists, doctors, teachers, fellow students, store owners, all his Facebook friends) wrote long letters about what he had meant to them, how open and warm and funny and caring he had been.  People called and wept, and I comforted them when they couldn’t speak.  It was the most difficult and, at the same time, one of the most beautiful times of my life.  Pain and love were everywhere.  The wake at home on Saturday was packed with people.  And the next day we released half of Jesse’s ashes into the Bay of Fundy right in front of our home.  My Dad and his wife purchased a red oak tree (just a little over 6’6″ tall), and about a week later we planted it on a knoll beside the house and overlooking the water, with the rest of Jesse’s ashes around it.  He will be here and everywhere.

Go to Part IV of Jesse’s story.

Jesse’s story – Part II

9 Mar

Jesse was a high school friend.  We lost touch after he left town at the end of Grade 12.  Years later, we reconnected through Facebook, and I learned that he had developed epilepsy shortly after we had lost touch.  Jesse died this past November. This is Part II of Jesse’s story, as told by his mother, Léa.  For the introduction, click here, and to read Part I, click here.

Soon after starting Keppra, Jesse found a dishwashing job that turned into bussing and waiting tables, in a restaurant called The Great Wall. The owner there, Patrick, took a real shine to Jesse, in spite of – or perhaps because of? – his epilepsy.  Some people there didn’t have the time of day for Jesse, but Patrick stood up for him again and again, and Jesse worked there for almost two years, a record for him!  During this time, Jesse and I would often talk about the fact that the better control of his seizures might mean he could have more options for his life.  He had felt hopeless for so long, and was so down on himself, that at first he couldn’t even think of what he might like to do as a career; and he was afraid of debt.  Then my younger sister, Carla, contacted him through me and said that she would help him financially if he had a dream he wanted to follow.  This was an amazing moment, and jolted him out of his lethargy.  He did a lot of thinking and decided to turn his deep love of trees and wood into a career in heritage carpentry.  With Carla’s help, he began to live his dream, taking the heritage Carpentry program at the Nova Scotia Community College.

The next two years were wonderful to see.  He remembered how smart he was, gained people’s respect, and began to feel as if he had a real future.  He aced his courses, and became a real part of the towns where he lived, especially in Lunenburg (his second year of school).  There he worked for people on their heritage homes and made true friends.  He continued to seize 4-5 times a year, but this usually happened early in the morning and he could sometimes tell they were imminent, so the injuries were less serious than they had been before Keppra.

In the early winter of 2009, during Jesse’s year at the Lunenburg campus, we learned that his sister Caitilin and her boyfriend Matt were expecting a baby in the summer.  Jesse had always been wonderful with young children.  He would often volunteer to babysit friends’ children when the parents and his other friends were going out for an evening.  I think he found real peace around little ones. He had talked with me, over the years, about how much he would love to be a father, but how he was sure it would never happen for him.  Caitilin’s pregnancy was incredibly exciting for him.  Friends have told me that at that point in time, his persona on Facebook changed, becoming softer and more emotional.

This past spring, after completing his courses with Dean’s List status, he moved to Halifax and within weeks had found work with a boss who understood his condition and supported him really well.  He was on a crew with a foreman who really respected his work, and he started to grow lean and muscular.  Even his walk was different – so confident and easy.  He would come home for a visit and show his newfound muscles, and talk happily about the details of his work and his workmates.  After years of walking on eggshells, I began to believe that everything would be okay – better than okay.

During this time, we had a great talk in which he told me that it was time for me to pull back in terms of watching his every move and worrying so much about him.  I explained to him how difficult the past years had been for me:  watching him seize so many times, hearing about serious injuries after they had happened, being insecure for so long about his compliance. But I also said that I knew things were different now, and that he needed to be his own person.  I agreed to keep more distance, to ask fewer questions, not to “check up” so much.  And I told him that if I “forgot” myself, he should remind me.  It was a terribly hard promise to make, and I had to talk to myself all the time about it; I still worried about him constantly, but had to keep it to myself more.  Once in awhile I would overstep, and Jesse would look at me with this smile and shake his head and say, “Mom  . . . ” and I’d stop and apologize, and we’d laugh.

On Caitilin’s own birthday, our beautiful Jesse Moss was born. Jesse was the first person I called after the birth, and I could hear tears in his voice – he was overcome with happiness. The next Friday, Jesse rushed out to visit and we went immediately to the hospital. It was love at first sight. Jesse was almost afraid to hold Moss in case he might have a twitch and drop him. I told him not to worry, that I’d stay close by, and he relaxed a bit after that. We got dozens of photos of him holding the baby. That night he posted the following on Facebook: “Born @ 7:51pm — my 1st nephew, Jesse Moss. ♥ We use his middle name to avoid possible confusions, but the choice of his first name has me *speechless*. ♥ Tiny and lovely in every way, I see him so clearly in my mind. So these pics are for you, my friends, to share in my joy.”

In response to the photos he had posted, one friend said that Moss was “just beautiful”. Jesse replied, “The word “just” does not apply here, Dee. Nor simply. Moss is beautiful… and more. ♥” After that visit, Jesse came out every chance he had, and I have never seen him so totally happy and at peace. We were living in “the valley of love and delight”. Life seemed perfect . . . .

Go to Part III of Jesse’s story.

Jesse’s story – Part I

2 Mar

You may have noticed the new look on the blog.  That’s my new purple layout in honour of March being Epilepsy Awareness Month in Canada.

Here is the first part of Jesse’s story, as told by his mother Léa.  At the start of the narrative, she was living in Cambridge Bay and Jesse was still in Iqaluit.  (If you’re not familiar with this part of northern Canada, I will tell you that both these communities Nunavut are fly-in only; it’s not easy to get around.)

So yes, I first heard about the “first” seizure when Letia called me in Cambridge Bay.  It had happened when Jesse was with friends, and it scared them, but Jesse didn’t want to tell me.  The reason I have put “first” into quotation marks is that I later wondered whether it really was the first.  For several months previous to that, Jesse had been sleeping inordinate amounts of time — 12-14 hours a day if he could — and still seemed groggy.  I was very concerned, and talked with people I knew who had teenage sons, and a few of them said their boys had also been extremely tired in their late teens, so I just put it down to “growing”.

He went on Valproate first.  At first, it seemed to work fairly well; but the epilepsy increased in intensity over time and his dosage had to increase too.  The effects on him were awful.  He was puffy in the face and fuzzy in the mind.  His speech, which had always been deliberate, was now painfully slow at times.  His memory was affected, both short- and long-term.  And his sleep continued to have to be extremely long.  If he didn’t get at least 12 hours, he was guaranteed to seize.  So here he was, a grown young man, trying to find and keep work and to have a life.  And he lost job after job after job because he seized on site, until the only work he could keep for any length of time was dishwashing in restaurants (because they always need dishwashers).  In these jobs, he was repeatedly treated badly.  Partly this was because dishwashers seem to be the whipping boys of the kitchen; but it was also partly because Jesse was so smart and personable, and he was expected to be a mindless drone.  He would take the abuse as long as he could, then finally have had enough and say something and get fired; or the number of seizures would get people to the point where they felt they couldn’t count on him and he would get fired.  Over and over and over.

So for years he seized as many as 3-4 times a week. He seized in traffic while riding his bike; he seized on, and fell down, staircases; he seized in the shower; he seized anywhere and everywhere.  His body was covered in scars, he lost two teeth, he suffered numerous concussions.  When you are 6’5” tall, every fall is a big fall.  And yet he was incredibly patient and brave through it all.  I know that he worried about his future and what epilepsy might ultimately do to him, but he always tried to minimize that in front of those of us who loved him.  During this time, he was also, I am convinced, clinically depressed. All he had time for was sleeping and working (if he even had a job).  If he stayed up to visit with friends or go to a party, he seized the next day.  And he was dirt poor and had to rely on me for financial help regularly.  I was happy to help, but this was extremely hard on his self-esteem.

The other thing that happened periodically during this time was that Jesse would become non-compliant about taking his meds.  He hated what they did to him, and had periods where he was running out and didn’t want to ask me to help pay for them, so he would cut back and seize repeatedly.  This was so painful for me. He would be taken by ambulance to the hospital, where they would report that his blood levels of the meds were far too low.  So I would talk with him and he would be unwilling to discuss the issue, and upset to have me trying to tell him what to do.  This went on for a number of years.  I took to going with him to the doctors, just so I would be clear on what was happening.

His neurologist was getting a little short-tempered with him because of the non-compliance, but another doctor who was training in neurology, Susan Rahey, saw aspects of her own son in Jesse, and loved him, and decided to make him her project.  It was she who talked to the company who made Keppra and convinced them to give it to Jesse free of charge.

That was a little over 4 years ago, and the Keppra was like a miracle.  Suddenly, once they got the dosage right, Jesse was having only 4-5 seizures a year and at predictable times of day.  He wasn’t puffy and groggy — he could sleep 7-8 hours and be perfect.  His speech returned to how it had been before the Valproate. The only things that didn’t return were his memories.  He had “lost” much of his childhood, and his short-term memory was spotty; he could have a conversation with you one day and forget it by the next.  But he realized that he could use his cell phone to make notes about things he wanted/needed to remember, and it became a crucial tool for him.  When he was home for visits, or when we went out for dinner in the city, I would make a point of telling him, again and again, the stories of him as a little boy so that, even if he didn’t remember them firsthand any more, he might remember my telling of some of them.  I know Jesse wrote to you that Keppra gave him his life back.  It also gave me my son back, for a while . . .

Go to Part II of Jesse’s story.

Jesse’s story – The introduction

1 Mar

After I learned that my friend Jesse had passed away, I got hold of his mother’s e-mail address.  Léa was my Grade 11 English teacher, someone I had always greatly admired, and who had been there for me during some tough times in high school, above and beyond the basic teacher’s role.

We hadn’t been in touch in such a long time, I was afraid of saying the wrong things and causing her more pain.  As you will see, though, she is just as generous of herself as she’s ever been.  It took several e-mails to tell Jesse’s story, not to mention an enormous emotional investment.  I’m going to share that story with you here, also in parts, and in her own words.

I do hope you read it.  Despite the heartbreak of a life ended all too soon, Jesse’s story is a beautiful one, because he lived it bravely and generously.  For a time, at least, he was able to overcome all the shit, oh crap all the dirt “the beast” heaped on him.

Here’s an excerpt from a message he sent me when we first got back in touch and I learned that he’d been living with epilepsy:

There is no prying. This is sharing information about an important topic. Living with epilepsy for 16 years taught me — among other things — to be open about it, to not be shy because of it, not to fear it or fear doing possibly dangerous things because of it, and most important, to teach others more of the truth…

After my first seizure, I woke to a bunch of friends shaking me, asking if I was okay, looking all concerned… and I thought it was an elaborate practical joke, and blew it off… But one friend took it serious enough to call Mom in Cambridge Bay.

There is no reason for my seizures; they happen, there is no cure for me, that’s enough information for all but my neurologists.

My drug from age 18 – 30 was Valproic Acid. I gradually worked my way up to 1000mg, 2x a day… but in 2006 a new drug came out (Keppra aka Levetiracetam). It wasn’t until I had no side-effects that I realized how many I had with the 1st meds. February 16 was my 4-year anniversary of getting my life back — enough that I can work with power tools all day without fear.

And now that I’m in control, all those good vibes I saved for myself getting better are free to go to others like Jade!!

Isn’t that sweet?  Like his mother, Jesse was always willing to give of himself.  Jesse was happy to share his life and his experience with others.  By hearing his story, we can give him his voice again.

Click here for Part I of Jesse’s story.