My husband died years ago -11 years next month to be exact. 11 years and I still get mail addressed to him. I have changed our names on every account long ago, heard every uncomfortable “I’m so sorry” from customer service agents from one end of the country to another as they called and asked to speak to him, but it doesn’t matter – we still get mail. It doesn’t bother me really and occasionally it makes me laugh. I love getting the junk mail that asks him if he needs a vacation. No, no he doesn’t. I certainly do but he’s all set, thank you very much.
Today I was driving home, thinking about memories and how your brain plays tricks on you. There is some sort of natural defense mechanism that pops up to help you not remember certain things I think. Because remembering them is too painful. Not necessarily because they are sad memories, but the memories that are full of wicked happiness too. Sometimes it is hard to remember that without feeling a stab in your gut. The memories where you thought the happy would never end, the memories where you felt so good you thought you might burst. Occasionally, our brain is trying to protect us by making those images more difficult to recall. I don’t remember exactly what led me down that thought path as I was winding home through my neighborhood – probably trying really hard to put something out of my mind I would guess. There are plenty of memories – good and bad – that sometimes it would really help me to forget. Sometimes you want to swim around in them, get lost in them and feel it all, and other times I wish there was a pill I could take to block certain images from my brain forever. But a good friend recently told me that we can’t forget because we have to learn from our experiences, that’s how we grow. I’m good, I don’t really need to grow anymore for a while.
When I arrived home, I grabbed the mail and flipped through it real quick. Bills, junk, bill, magazine, junk, a letter from Brigham & Women’s Hospital in Boston. Wait, what? I stared at it for a while. It was addressed to both of us, Mr. & Mrs., and the logo up in the corner just stared back at me. It’s been 17 years since I received anything from there. That hospital has such significance for me. It is where our first daughter was born in 2000, it’s where my dad had surgery and went thru a long recovery – and it’s where my husband had brain surgery in 1998. His surgery was at just about this exact time of year too. So odd to get this piece of mail today. The memories of his surgery aren’t suppressed exactly but they aren’t memories that make me super happy and full of joy – that’s for damn sure.
Steve loved to say that he started having seizures after we got married. Ha ha. It always got a laugh and it is kind of true. He had his first grand mal seizure about 6 months after we were husband and wife. However, we realized after meeting with doctors and getting educated that he had been experiencing auras and possibly having some type of mild seizures for years prior to that. He would sometimes talk about this odd sensation that would come over him. He would describe it to me – a metallic taste in his mouth, hearing things as if in a tunnel, feeling a little dizzy. We chalked it up to anxiety and, of course, being the guy that he was, he never talked to a Dr. about it.
That first big seizure happened in the middle of the night, woke me up out of a deep sleep and scared the crap out of me. I had no idea what was going on and at first, I thought he was joking. If he couldn’t sleep at night, he would sometimes press his foot against me to see if he could wake me up too, or he would shake the bed. I thought that was what was happening. But that wasn’t it this time. We talked about it in the morning and thought it was a seizure and that we should get to a doctor to see what the hell was going on. So we found a doctor that could see him that day and went in – a little freaked out.
The doctor confirmed that it was a seizure, gave him a prescription and told him he could not drive any longer, until the seizures were controlled. I’m sorry, what? Steve drove everyday for work – he was in sales and was on the road all day from one account to the next. He loved his work, thrived on the energy of being mobile and discovering new leads. He had to drive and I certainly couldn’t drive him as I was working too. With that tidbit of information, he blew off the whole thing. “It’s never going to happen again. This was a fluke. I sure as hell am not going to stop driving. And the side effects of the medication that the doctor talked about sound terrible.” So it went like that. He was not someone you could talk into anything and he was not going to have it, any of it. I think he thought he could almost wish it away, use the power of his mind to ensure it never happened again.
It happened again. About 2 weeks later and again in the middle of the night. Longer this time and scarier because I knew what was happening and I wanted to help but there was nothing I could do except try and keep him safe. Back to the doctor, on meds – but never stopped driving. The good and bad of his seizures was that they always happened in the middle of the night, so after a while we didn’t worry too much about driving in the daytime. The doctor referred to them as nocturnal seizures so that made us feel a little safer. The medication helped a great deal but he would still have break thru seizures every few months. The medication also made him feel lousy. He felt drowsy and like he was in slow motion at times, occasionally had trouble speaking or finding the right word. He was miserable. Needless to say, therefor, so was I.
We sought out answers and a friend directed us to Dr. Peter Black at Brigham & Women’s Hospital. He was a world-renowned neurologist and neurosurgeon. As soon as we discovered that our insurance would cover a visit with him we made an appointment. We had to wait a few months but dammit, we got an appointment. We met with him and Steve had an MRI done again. Dr. Black saw a small tumor in the area of the brain that he believed could be the source of the seizures. He thought if he did surgery to remove the tumor, there was a good chance of the seizures stopping. That would also mean no more medication. We took it all in and stared at each other in disbelief. Brain surgery? What the? We never dreamed it would come to that. I tried to focus on the positives – no more medication and no more seizures. Done deal, right? Get it on the calendar. Steve was less convinced and much less positive. It was his brain after all, and I don’t know anyone that would get excited for brain surgery. But, after suffering through another seizure a few weeks later, he called and got the surgery balls in motion. He wanted so badly to be done with this. The uncertainty of them, the side effects of the medication, the pain and soreness he experienced for days after the episodes. He wanted to be done.
In October, about 6 months after his first seizure, he had the surgery. It was performed in a very state of the art operating room and the surgery was one that that this doctor had pioneered. He was actually in a type of MRI machine for the surgery. He could not have been in better hands or a better hospital. The surgery was more than 6 hours long and we saw the doctor as soon as it was over. He had removed the tumor and he let us know that it was not cancerous. He said that Steve had come through it really well. Really well looks different on everyone. Prior to the surgery, we had asked what could be expected as far as pain in recovery. “It could be anything from nothing to a headache-type pain. Everyone reacts differently but don’t be concerned.” I should have been concerned.
Steve had spent a day and a half in the hospital when I got a call from him that they wanted to send him home. Already?! I couldn’t get over it. I rushed to the hospital, wanting to explain to anyone that would listen that I was indeed not a nurse and not qualified to take care of a man that just had brain surgery. Nobody wanted to listen to me. So – home he came. He looked terrible and felt even worse. His head hurt more than any headache you can imagine and his nerves were on edge. At the time, we lived in this cute little apartment right on Main Street in a very sweet Massachusetts town. Our bedroom window overlooked the street and the corner store. It was idyllic. Until Steve got home, laid down in bed and the annual adorable Halloween parade began to proceed right under our bedroom window. Unbelievable. Several marching bands, fire trucks and police cars, slowly rolling down the street. Just in time to welcome home this man who had just had brain surgery, and who on his best day, was not the most understanding or tolerant.
That was the start of 2 + months of a horrible recovery. Steve felt like he was in hell – we all did. He actually had a seizure the day after he came home but we were told that was normal after what his brain had just been thru. Normal but scary as hell. Steve was given pain killers to help him recover and while he needed them badly, especially those first weeks, they slowly started to trigger that part of him that was a lover of things that made you feel differently and alter your reality. Unhappy isn’t really the word for what he was at the time. Miserable, insufferable, exhausted, frustrated, angry. All those things and more. He wanted to be back to himself, back to feeling OK and back to work. But he couldn’t get there. Thanksgiving was a month after his surgery and he refused to leave the house, refused to go to my parents as we had planned. He insisted that I go without him because he wanted to be alone. He sank into a really deep depression that was fed by painkillers and other pills that the doctors kept prescribing for him after he would call and call and tell them how badly he was feeling. On Christmas Eve, we were going to go to my parent’s house and be with them and my brother and his family, who had come in from out of town. He wouldn’t go and he wouldn’t tolerate me staying with him. I wanted to see my family – so I went. They only lived about an hour away from us. Late that night I was feeling so badly to not be with Steve and I was worried about him. I called several times and he didn’t answer the phone so I left my parent’s house on Cape Cod and drove home. I arrived to an empty apartment. It was midnight on Christmas Eve and my husband was nowhere to be found. My recovering alcoholic, pain killer loving husband was out somewhere in the night and I had absolutely no idea where. I stayed up for hours, waiting. Around 6am I drove back to my parents so I could be there when my nieces woke up and have Christmas morning with them. I left to go back home earlier than planned but I was terrified that something bad had happened or that he might never come home. He did. He came home, not remembering much. He had been drinking and using. He was a hot mess and he knew it – but he didn’t care. Not yet. He was just trying to escape. But his drinking scared the pants off of those that loved him and there was always the fear that he wouldn’t stop again.
He did stop in January, a few weeks after Christmas. He finally had started to feel better physically and he and I had some real come to Jesus talks about what he was doing to himself and to our relationship. He stopped, started going to meetings again, got his ass back to work and moved forward. It was beautiful and he was feeling happy and more at peace. And no more anti-seizure meds – whoo hoo!
Everything was coming up daisies until the night I felt his arm start to tremor in the middle of the night a few weeks later. And again the next night. It was not over, the surgery did not work, did not stop his seizures. They were back full on within the next month. All that time, energy, emotion, pain for naught. Shit.