Deborah Brandon, PhD – Brain Blogger http://brainblogger.com Health and Science Blog Covering Brain Topics Wed, 30 May 2018 15:00:03 +0000 en-US hourly 1 https://wordpress.org/?v=4.9.6 Carpe Diem—Living with Fear http://brainblogger.com/2018/03/16/carpe-diem-living-with-fear/ http://brainblogger.com/2018/03/16/carpe-diem-living-with-fear/#respond Fri, 16 Mar 2018 12:00:25 +0000 http://brainblogger.com/?p=23480 “Live life to the fullest.”
“Celebrate life.”
“Carpe diem.”

I’ve heard them all. But what if I don’t feel like it? What if I’m having a lousy brain day, restricted to a darkened room with a blinding headache, and seizing the day is not an option?

I have clusters of malformed blood vessels called cavernous angiomas in my brain. Two of them bled, turning my life upside down with seizures and other symptoms. A few months later, I underwent resection surgeries to prevent future bleeds.

The surgeries wreaked additional havoc—headaches, seizures, fatigue, short attention span and memory loss, vertigo and poor balance, as well as severe depression. During the first couple of months post-surgery, my world revolved around my recovery. I was in survival mode, often fearful, often feeling alone. On good days, I took it one day at a time. On bad days (and there were many), I slid back three steps for every half step forward. There wasn’t much I could seize on those days.

A year into my recovery, I finally had the wherewithal to join the Angioma Alliance, an online support group for angioma patients. Through the website, members connect with each other, sharing war stories, sometimes asking questions but more often seeking reminders that we are not alone in our struggles.

All of us cavernous angioma patients live with an ax hanging over (or inside) our heads. There’s always a chance of a bleed, especially from an angioma that has bled before. Angiomas can cause symptoms even when they haven’t bled. A resected (surgically removed) angioma can grow back. Many of us who have the familial form of the disease have many angiomas and can generate new ones throughout our entire lives.

Those of us who are good candidates for brain surgery, where the benefits outweigh the risks of surgery, are considered the lucky ones. One of the members of the Alliance has an angioma located in her brain stem. Unfortunately, it is inoperable. My friend is scared of the very real possibility of a bleed causing her heart to stop beating or to suddenly take away her ability to breathe. Her fears often paralyze her, preventing her from taking life by the horns.

My fears emerge when a new symptom appears or a new manifestation of an old one emerges: is it a sign of a new bleed? Is a new angioma forming?

These days, more than ten years since the surgeries, my good days outnumber the bad. Most of the time, my fears hide beneath the surface, and when they do come out of hiding, they rarely paralyze me.

I should be able to seize the day.

I have several friends who are breast cancer survivors. Sheryl, at the age of seventy, learned to fly-fish and dragon boat. She paddles competitively and participates in national and international dragon boat races.

Darlene didn’t even jog before her diagnosis; now she runs marathons. She rarely traveled out of town, and now she travels frequently and extensively. She’s tried sky-diving, attends glitzy shows, and throws frequent pool parties.

Are these inspiring activities the only ways that count as living life to the fullest? Should I seize and celebrate life like my breast cancer survivor friends?

I have absolutely no interest in sky-diving or learning to fish. Glitzy shows have never been my thing, and I do my best to avoid parties.

Is it a matter of personality? Perhaps if I were as gregarious as my friends, I would live more like them. They may not have been as daring pre-cancer, but were they as gregarious as they are now? Perhaps they only developed that side of their personalities after the challenges of treatment and recovery. Was I supposed to have become more outgoing?

Having had to take a crash course in asking for help and admitting my weaknesses, I have become better at connecting with people. I’m not as extroverted as Sheryl and Darlene, but I am more outgoing than I was pre-surgery.

Still, I’m not a party-goer. My difficulties processing high volumes of sensory input keep me from activities such as sporting events and parties that involve large crowds, loud noises, and garish colors.

Perhaps it’s a matter of energy or lack thereof. Much of the time, I struggle through debilitating fatigue and have nothing left for celebrations. When I am overtired, my deficits are exacerbated and vertigo returns in full force, my balance is precarious, my attention span is that of a gnat, I have trouble accessing vocabulary, and my headaches are crippling.

I have to pace myself. I take one day at a time, shuffling through the bad brain days, enjoying the good days. Is that the best I can hope for? Is that seizing the day?

Like my cancer-surviving friends, my life has changed dramatically. I travel much more than in my pre-injury days, to Colorado and New York, Israel, and Mexico. Always, wherever I go, I must seek out quiet spots to recover and regroup. But once my inner traffic jams clear up, I join in the fun, though at a slower pace.

I do have more passion in my life—it comes to light in my teaching, in my writing, and in my need to make a difference in the world.

Within a few months of my surgeries, I moved into a more central neighborhood. I am within walking distance of shops and restaurants. I no longer drive everywhere. My awareness, both of myself and the world around me, has grown; I am more in tune with my fellow human beings, better able to interact with my surroundings. I live more quietly. I take leisurely walks, stopping to absorb my surroundings. I play with my grand-dog, enjoying his antics. Life is harder but more fulfilling.

Could my way also count as a celebration of life?

It is a lovely day outside. I am well rested after a rare night of decent sleep. I slip on my jacket and head out for a stroll along the nearby river.

This diem is definitely calling out to be carped, my way.

Image via FabyGreen/Pixabay.

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In and Out of the Abyss: Depression After Brain Surgery http://brainblogger.com/2017/10/04/in-and-out-of-the-abyss-depression-after-brain-surgery/ http://brainblogger.com/2017/10/04/in-and-out-of-the-abyss-depression-after-brain-surgery/#respond Wed, 04 Oct 2017 15:25:22 +0000 http://brainblogger.com/?p=22942 Once again I was on the phone to my friend, sobbing. She’d put up with my tears every day since I left the hospital. Two or three daily meltdowns were the norm.

Many of my tears were over things that would have merely irritated me before: misplaced scissors, dirty socks in the middle of the living room, a brief computer glitch.

I have cavernous angiomas, tangles of malformed blood vessels, scattered throughout my brain. Two of them—one larger than a golf ball in my right parietal lobe, and the other, smaller, in my brain stem—had bled, and I underwent brain surgeries to remove them.

The bleeds and surgeries led to side effects including loss of balance, vertigo, nystagmus, trouble with sensory overload, and a number of cognitive deficits. My emotions also seemed volatile. I expected that my emotions would settle down as my brain healed. They didn’t.

After putting up with about a month’s worth of meltdowns, my friend spoke up. “I think you need meds.”

I was shocked. The possibility of psychiatric medication had not occurred to me. The people I knew who needed it had major issues: a cousin whose mother had died when she was ten years old, a friend who had been suicidal, a student with bipolar disorder. I wasn’t depressed. I just got really upset too easily. I was just fragile, and, given what I’d been through, that was understandable.

I wasn’t in denial over my emotional state. Aware of my extreme vulnerability, I’d been proactive: I’d started seeing a psychotherapist regularly within days of my return home from the hospital. I had things under control.

I knew that brain injury can cause chemical imbalances, which can lead to clinical depression. In one account I read, a patient lamented not having gone on antidepressants sooner. Feeling fortunate that I wasn’t in that bad of shape, I sympathized with those who were.

I didn’t need meds.

Over the next few weeks, as the tears flowed more often and more freely, my friend grew more insistent. I continued to resist, explaining away my vulnerabilities. It was normal to grieve over losses. I blamed really bad days on my menstrual cycle.

But as the severity and frequency of my meltdowns increased, I had more trouble rationalizing.

I spiraled into the abyss and finally reached the bottom. I felt desolate. I knew I was a burden on everyone around me and that my life wasn’t much of a life. Suicide seemed logical, perhaps the only solution.

I kept my suicidal thoughts secret—I didn’t want my friend or my therapist to try to talk me out of it.
Weeks later, when I began to emerge from the abyss, I kept my silence because I felt ashamed, and later still, I added guilt to the shame—I had betrayed the trust of both my friend and my therapist.

I tried to rationalize my lie-by-omission: I told myself that I could never really take my life, that I didn’t have it in me.

But in some corner of my mind there must have been doubt mixed with the rationalization because a few days later I decided to discuss antidepressants with my therapist. She agreed with my friend: it was time to consider meds.

Until the brain bleeds, I was averse to pill popping. I took painkillers for my migraines and antibiotics for bacterial infections—no other medications. After the bleeds, I started taking blood-pressure meds (Verapamil) to cut back on the chances of another bleed and anti-seizure meds (Lamictal). I was concerned about messing with my body chemistry, and worried about drug interactions—I wanted to avoid medications that listed seizures as a possible side effect. Given my concerns, my therapist sent me to a psychiatrist who specialized in psychopharmaceuticals.

I wasn’t sure whether there was a viable solution within my comfort zone, but the answer turned out to be straightforward: the psychiatrist suggested simply increasing my daily dose of Lamictal. Anti-seizure meds not only prevent seizures; they also act as mood stabilizers and are often used to combat depression and bipolar disorder.

My psychiatrist conferred with my neurologist, who, concerned about adverse reactions to the Lamictal, was firm about capping my daily dose at 600 milligrams. My psychiatrist, determining that my depression was severe, decided to increase the dose directly from the 400 milligrams I was on to 600 milligrams, instead of ramping up in increments, which is the standard procedure.

I responded well to the increase. Feeling like myself once again, I realized just how badly off I’d been. Like my cousin, my student, and my friend, I too had major issues. Except that I really wasn’t like them—my issues were temporary. Once my brain healed, my depression would be over, and I’d be able to get off the meds.

It took a good four years and a couple of trial runs with lowered dosages before I managed to fully shrug off that piece of denial.

A decade later, I’m still on antidepressants, for good reason.

This depression isn’t “situational.” Good friends and therapy help me survive, but they aren’t enough. The bleeds and surgeries changed my neurochemistry. These changes are real, and they’re here to stay. The meds are here to stay, too.

Image via 5arah/Pixabay.

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