Tonight I am Grateful

I just got off the phone with my mum. And today she is having a good day, and a good night so far, and for that, I am grateful.

My mum was diagnosed with epilepsy at age 21, when for no apparent reason, she had a seizure. She was put on Dilantin and it seemed to do the trick. For my entire childhood, for my entire twin sister's childhood, and for my older brother's childhood and teenage years, she was seizure free. Or relatively so. Her seizures were so few and far between as to be an anomaly, the blue moon of our family.

Then, when I was a teenager, maybe 16 or 17, she started having seizures more frequently. What had been a once, or at most twice, a year occurrence became an increasingly common phenomenon. It was hard too because my father had left, so she didn't have that support system she was used to. We met with her doctors as a family to see what could be done, and for the next three years new medications were tried, older medications were adjusted, some medications discarded altogether. She would have good times during these three years, bad times during these years. More than a few times I was called away from work or school because mum was in the hospital, having had a particularly bad seizure, one that lasted more than five minutes, which is when you begin to get concerned about any long term effects to the brain. I actually cannot recall, or even guess at, the number of times during this period that she was admitted to the hospital, usually for one or two days for observation and to have her medication levels monitored. When all of this began she voluntarily gave up her license and gave her car to my sister. This loss of independence was, I think, one event that led to what would eventually become a crippling depression.

In the spring of 2000 my mum was ravaged with seizures. During most of this time she couldn't work, and my sister, bless her, was acting as her primary care taker. I mean, she could feed herself and cook and clean and all those things. But there were so many seizures, so many times she needed to be picked up off the floor and put in her bed. So many times she needed to be reminded about her meds or about this neurologist appointment or that one.

Finally in the summer of 2000 my mum took what I consider to be a very courageous step. She elected to have her brain activity monitored for about a month so her neurologists could determine where in her brain the seizure activity was taking place. She wore this funny electrode-cap for about a month, everywhere she went. To work (on the days she could work), to the grocery store, to the bank, there went the cap. Under a hat of course. But it couldn't have been comfortable for her.

When the neurologists could confirm which areas of the brain were experiencing the seizure activity, they outlined for her what the next step would be: a risky and possibly ineffective surgery, wherein they would open her skull and carefully remove those sections of the brain that were affected, in the hopes of removing the seizures from her life. There was the possibility of loss of memory, loss of verbal and motor skills, and of course loss of life, should the surgeons experience unforeseen complications.

She decided it was worth the risk.

That August, in 2000, my older brother, twin sister, and I waited alone at Brigham and Women's Hospital in Boston as the eight hour surgery was performed. After ten hours had passed we got word that she was out of surgery and was in the intensive care unit, but we would not be able to see her for a few hours until she stabilized. We waited. And then we got word that during this time, she didn't stabilize. A vessel in her brain had begun bleeding in post-op, and her head began filling with pressure. It caused her to have a stroke before they could get back in and drain the blood and relieve the pressure. It was at this time that I called my next door neighbor, Joan, who had been mom #2 during childhood. She and her husband had always lived next door to us, and she had kids the same age who were our best friends growing up. She was literally another mom to me. I called her on a pay phone and somehow through the tears managed to tell her that I needed her to come to the hospital. She arrived in less than a half hour.

The week after this surgery is somewhat of a blur. I knew that nothing would be the same. I had been a student at UMass Amherst at the time, which is about two hours from my childhood home in Boston where my mum and sister and nephew all lived together. I remember drinking a lot, plenty of self-medication, but usually only during the night. During the day I mowed the lawn, I cleaned the house, I tried to keep myself occupied. I quit the part-time summer job I had, and I contacted my university to let them know I wouldn't be returning in September.

My mum spent two weeks in intensive care, then another week in a regular room at Brigham and Women's Hospital. During this time she was heavily medicated, and her head was wrapped in a considerable amount of gauze, as they had not yet reconnected the piece of her skull bone they had removed for her initial surgery. I remember noting how chapped her lips were. They looked so painful. They were the chapped lips you see on a homeless person.

She couldn't speak during these three weeks. It was unclear whether this was a result of the brain surgery, or a result of the stroke. But when she did wake up for a short period of time, she could recognize her children and would smile when we told her how much we loved her.

After three weeks she was stable enough to be moved to a rehabilitation hospital, Spaulding Rehab. There she worked with speech therapists and occupational therapists and physical therapists. She was able to talk more now, though not perfectly, and her vocabularly was severely diminished. She could move the right side of her body, but her left side was rendered temporarily paralyzed by the stroke. She also had to wear a helmet during the time she was at Spaulding. First because the bone flap was still not reinserted into her skull, and then later after it had been reinserted, because the area around it needed to be protected until the bone could fuse back together.

Over time she improved. It was gradual, but you could see it. None of us liked visiting the rehab hospital, because it had that hospital-y smell and reminded us of how different things were now, how they would never be the same. I was the only child not working, but I wouldn't say I spent more time visiting her, as I didn't have a car. But of her three children one of us was always there every evening before visiting hours ended.

Mum spent three months in the rehab hospital. I remember she was able to come home just before her birthday, at the very end of October. By now I was working, but had dropped out of school, vowing to return when things returned to some semblance of "normal." She was thrilled to finally be out of the hospital, back in her own home after being away from it for three months. Her vocabulary was improving by the day, but she still had many moments where, mid-speech, she just couldn't find the word she was looking for. It was there in her brain, but it wouldn't come out of her mouth. Eventually she was able to return to her job.

But she was still having seizures.

She had gone through all of this, and it didn't work.

Her seizures were different now. It wasn't the typical seizure you see on TV, the thrashing around, the noises, the foaming at the mouth. Now she was having seizures where she was up and about, moving, but occassionally making jerky movements or funny noises. And she was in a daze, in her own little world. You could talk to her but there was nothing there, just a woman in jeans and a lighthouse sweatshirt picking at the lint on her sleeve.

The seizures would come to change over time, but they were, and to this day still are, always there.

It's now 2005, and in the five years since her surgery her seizures have developed into something even the best neurologists have not been able to explain. In short, every week or two for the past four years, she has one or two days per week where she cannot talk. She is in "an episode," as we've taken to calling them. Sometimes when she's in an episode it's as simple as her not being able to talk. She can understand what you're saying to her, she can process information, but she cannot respond. If she can respond it's usually the same thing over and over. "Mum, how are you?" "Fine." "Mum, what's your name?" "Fine." "Mum, what did you eat today?" "Fine."

Those are the easy episodes.

They escalate sometimes, and then she's really out of it, and her body shakes and she makes noises not unlike a goat. The noises and the shaking are on and off, usually lasting for a few minutes and then going away until they reappear, whether that be a few minutes later, a few hours later, or not at all.

The harder ones are where, in this state, she actually slips into full-blown seizures. This always seems to happen when she's home alone, so she usually ends up falling and hurting herself. In four years she's broken an ankle, had at least 2 dozen black eyes, and bruised herself all over her body.

These episodes have happened once every week or every two weeks for four years now. The days change, although it usually sticks to a recurring pattern, where if she's in an episode Monday and Tuesday, then the next week it will be Sunday and Monday. Although once every month or two this pattern seems to go haywire, and it changes and you need to look for what the next pattern will be.

She's missed birthdays, weddings, anniversaries, and holidays because she's been in an episode.

This year, Christmas Day was one of those days. She was in an episode. While in the episode she decided to do her laundry. She fell down the cellar stairs. Right now, over a week later, she's still bruised over half of her body, and she won't let me take her to the hospital for x-rays to make sure nothing is broken.

Through all of this she's also suffered from a severe case of depression. The doctor's say it could be a result of her brain chemisty that changes when she slips into her episodes. It's been seven or so years of contant seizure activity so I wouldn't be surprised if that was the case. They've suggested anti-depressants but she refuses to take any more medications than she's already on, which is a considerable amount.

And while the seizure episodes are hard enough to deal with, it's her depression that really hurts me. I've preached the choir of anti-depressants and a therapist, but she just won't do it. As a result, most of our phone calls are quick, because she never has much to say. She goes to work when she can (thank God for her amazing boss who let's her have a flexible schedule and who understands that when she doesn't show up with no phone call, it's just that she can't speak and can't leave the house). But other than work maybe two or three days a week, she sits in her bedroom watching TV. Sometimes she knits. She's stopped cooking altogether. She has one friend who visits her maybe once a month. Her other friend, who she sees almost daily, is an 87 year old neighbor, who, sweet as she is, is suffering from degenerative glaucoma and the onset of dementia. Mum doesn't get out, doesn't want to get out, and rarely let's you take her out that often, except for grocery shopping.

Thus when I call and ask her how she's doing, she responds, every time, "OK, better than Sunday (or whatever day) when I couldn't talk..." And that's about the extent of her part of the conversation. She sometimes asks me how Gary is. She sometimes asks me about something she might remember is going on in my life, although it's usually asking for the 800th time what it is again that I'm getting my degree in. Similar to how she always forgets that I've been a vegetarian for 5 years and a non-dairy eater for the past 4.

But tonight was good. Tonight I called her and we talked for a half hour about her friend Phyllis and her cats and the fact that her TV is broken, so could I take her out this weekend to get a new one? And I said of course I could, and maybe on the way home from that I could take her out to lunch. And she replied how nice that would be, and maybe we could go to a vegetarian restaurant, since she always likes the food that I cook for her so much.

And that was enough to make me smile. Actually to make me cry. Because she is having a good day, and so far a good night. And this weekend we're going to eat vegetarian food together, and talk about her cats and her fondness for lighthouses and her friend Phyllis who is losing her eye-sight and getting more and more confused these days.

And that's a day I've learned to cherish more than any other.