I can’t and won’t speak for my better half. He will decide how much, if any, of this journey he wants to share from his point of view. But I want (read need) to share mine; both as a healing tool and in hopes of shedding light on and dispelling the stigma surrounding brain trauma. Reader beware: this is a raw and sometimes graphic narrative. There is humor interspersed with the pain and levity along with gravity. It won’t be an easy read, but if you choose to stick with it, you will know my truth.
Let’s start with the formal diagnosis: aneurysm with subarachnoid hemorrhage. According to my doctor, a vein tear, located at the basilar tip where the brain meets the brain stem, resulted in a brain bleed. An aneurysm (either arterial or venous) in this area is very rare, representing only 5% of all brain aneurysms. It’s also extremely deadly. A subarachnoid hemorrhage is a type of stroke which results in one third of patients surviving with good recovery, one third surviving with disabilities, and one third not surviving the event at all. If that doesn’t get your attention, I don’t know what will.
Approximately 5 hours transpired from the initial onset of symptoms (sudden and severe headache and neck pain) to diagnosis. I never lost consciousness, suffered muscle weakness, or cognitive difficulties. Though stroke protocol was initiated and repeated at regular intervals, I passed every test with flying colors. I still couldn’t help but feel as if I had a ticking time bomb in my head; any wrong or sudden moves could seemingly result in irreparable damage. My doctor made the explicit distinction of vein tear vs. arterial tear from the very beginning. Whether this was his way of tempering the panic, off-setting the significance, or bypassing the gravity of the situation, I’ll never know. But it worked. Our hope for a full recovery was restored.
An angiogram was ordered, to confirm the suspected diagnosis. A catheter was inserted into my femoral artery and navigated to my brain. A contrast dye was then administered, allowing a clear view of the blood vessel system and pinpointing the trouble areas. My doctor needed to confirm the bleed was contained, the pressure was under control, and no additional damage was evident. The potential risks of an angiogram include stroke and death. So, there’s that.
At the point I was taken down to surgery, I’d had about 24 hours to wrap my mind around what was happening. I knew from the moment the headache hit, that something was seriously wrong. We acted quickly, as did the hospital staff. In some ways it was a blur of doctors, nurses, CT scans, ambulance rides, and a flurry of words difficult to understand let alone comprehend. But specific moments will forever be burned into my memory with unforgettable clarity: the look on my husband’s face when I said we needed to go to the hospital; the first ER doctor confirming a 3mm aneurysm; my voice, shaky and filled with fear, asking the doctor, “What is the worst case scenario?”; kissing my husband goodbye as they prepared me for the ambulance ride; leaving my husband and son before surgery and begging them to remember “this” me, and not whatever “me” came out of surgery.
Based on everything we had been told, it appeared I was one of the “lucky ones.” The angiogram confirmed my doctor’s initial diagnosis. The stroke would have no lasting effects and the vein would heal itself. Though the road to recovery would be long and arduous, this truly was the best-case scenario. So, our attention turned from fear and uncertainty to gratitude and determination. Family and friends surrounded us with love, prayers, support, and encouragement. I was warned the healing process takes a significant amount of both time and grit. Not being the most patient person on the planet, this journey has been no picnic.
The protective layers surrounding the brain and the brain itself, do not like intruders. The bleed acted like a petulant younger sibling; niggling, gnawing, and constantly irritating the layers causing intense, throbbing headaches, tinnitus, and debilitating nausea. Pain medication barely made a measurable difference, dulling the intensity for only very short periods of time. Rotating ice packs every twenty minutes became a necessary and exhausting part of the process. There were times early on when all I could hear was my heartbeat pounding in my head. I moved slowly and deliberately so as to maintain my balance and reduce the need for unnecessary shifts in my head and neck position. Sleep was hard to come by as well. During REM sleep, my eyes would start to twitch which increased the intensity of the headaches and instantly woke me up. Steroids, meant to help relieve the swelling and decrease nausea, didn’t help the sleep process either.
Dry Cheerios were the only thing I could keep down for three straight days. I should probably send them a thank-you note. Then there were the phantom smells. Nothing smelled as it should. There was an ever-present sickly-sweet smell that was quite literally in my head and permeated everything, amplifying the nausea. I couldn’t bend over; not even to put my own pants on. Humiliating? You betcha. Humbling? Definitely. No straining. No lifting. No laughing. No coughing. No sneezing. I couldn’t focus or concentrate on anything for any length of time. For the ladies out there, how about having three periods over the course of 6 weeks? Did you know, there is a little-known phenomenon where, when the brain has been traumatized, a woman’s body may automatically begin a menstrual cycle to prevent pregnancy? Neither did I. Fun stuff. What about sex? The first time we tried, the intensity of my headache approached levels so close to the original aneurysm, I was afraid I was having another one. I cried out in pain (not in pleasure) and it took me two days to recover. I was left demoralized, depressed, and terrified I would never again be able to enjoy a physical and intimate relationship with my husband.
Aside from the real and obvious pain associated with a traumatic brain event, there is a significant amount of emotional turmoil as well. I’d be lying if the “Why me?’s” and “What if?’s” don’t consume me from time to time; a debilitating fear of both the known and the unknown. I want to be strong. I want to be brave. I want to be courageous. I want to be well. And all of it is out of my control. In many ways, I’ve never felt more vulnerable, weak, and discouraged. The questions and doubts are innumerable. How did this happen? Why did this happen? Will it happen again? What if I’m never the same? Have I become a burden to my family? Am I broken? Am I changed? I’m not supposed to be the one in the bed. I’m the one comforting, hand-holding, re-assuring. That’s my role, my job, and unfortunately, I have a wealth of experience to pull from. But as the patient? I’m terrible. Fear, anxiety, guilt, depression, and shame, are nearly constant companions. Unless you have experienced brain trauma, you have no concept of the struggle and words simply cannot paint an accurate picture.
Even as the headaches began to subside (a sure sign of healing), what I thought was just understandable anxiety, took a darker turn toward PTSD. I don’t want to see anyone because even though I look fine, I feel broken. Less-than. Stepping foot outside the house has become a daunting and terrifying task. So many stimuli…birds, sunshine, cars, horns, potholes, crowds, beeping, honking, lights flashing, voices. It is as if all of my senses are on hyperdrive. Short excursions to the grocery store or church are completely draining and require hours of recuperation. At the same time, I find myself pushing beyond my comfort zone because I want to feel normal again. Like NOW! And, if I’m being honest, there is a part of me that wants everyone to know the battle I fought and won. I beat the odds simply by surviving! If I could scream it from the mountain tops, I would (humbly and graciously, of course)!
A second angiogram was determined necessary to insure my brain was healing as expected and to rule out any additional anomalies that may need to be addressed. Expected to be a “routine” out-patient procedure, we prepared ourselves accordingly; keeping the mood light and nonchalant. After all, this was just a double-check and the final step in my rehab. I’d be home in time for dinner.
The results of the angiogram were excellent. Prognosis called for complete healing with no lasting ramifications. My brain was healed and I could resume normal activities immediately with no restrictions. Yay me😊 And then, the lines between my brain and my mind blurred. Though my brain showed no evidence of remaining trauma, I lost my mind. Suddenly and inexplicably, my memory of the past six weeks was erased. I did not know where I was or why I was there. For the next several hours, my husband had to patiently and repeatedly remind me of the details which had been wiped away. Everything had a surreal, dis-jointed, dream-like quality. I was foggy, confused, emotional, and panicked. The general consensus, though no "official" diagnosis was made, is that I suffered a rare condition called Transient Global Amnesia (TGA). Essentially, a combination of anesthesia, brain trauma, and anxiety caused me to temporarily forget the past six weeks. I had no recollection of the original vein tear or anything since.
I was re-admitted to the Neuro ICU overnight for observation. I still remember very little from that day and likely will never regain those lost hours. It’s disconcerting to have a black hole in my memory, but given the alternative, it’s a small price to pay. Unfortunately, this was yet another traumatic event which caused unnecessary stress and drama for my husband and family. The guilt I feel for putting them through all of this is more than enough to try to reconcile for now. Speaking to my son on the phone after I finally “came to”, and hearing him ask, “Do you remember me?” is something I will ironically never be able to forget, no matter how hard I try.
There is so much about the human brain we still don’t understand. And when it comes to brain trauma, any and all statistics, percentages, success rates, “should be’s”, and “supposed to’s” mean nothing. When you add personality, emotions, life experience and faith into the equation, predictions and expectations go even further out the window. There is no proven, all-encompassing road map to be followed. My experience is not the same as anyone else’s. But I do feel I’ve been inducted into an elite sorority, blessed to know other strong women recently touched by various forms of brain trauma. Our shared stories, whether made public or remaining private, will hopefully serve as a guide to help others navigate this difficult and life-altering event. Recovery can be a lonely road, but knowing others have paved a path (no matter how winding or seemingly indecipherable) can make all the difference.
The last six weeks have been a journey; lessons in patience, self-reflection, gratitude, and healing. The slightest tinge in my head still sends a stream of panic through my bones. I have zero tolerance for any headache and reach for the Tylenol at the first sign of pain. My nightly routine still includes a nerve blocker, pain meds, and my beloved "headache hat" (a wearable, re-usable ice pack which was a gift from my Dad when I returned from the hospital; I highly recommend it to anyone suffering from migraines or headaches). Can you say "sexy"??😊 I still have good days and bad days. Every third or fourth day I have what I not-so-fondly refer to as a set-back day; overall achiness, difficulty controlling my emotional responses, generally “off”, or any combination therein. Those days are especially challenging as the pain (either physical or emotional) is very real and runs very deep. It takes every ounce of my being to not succumb to the darkness; grounded in the knowledge the sun will rise again.
According to the statistics, I shouldn’t be here. But I am. I take great comfort in the rainbow that appeared immediately before my aneurysm; a promise that God has me in His hands. Even, and especially, when I "don't got this", He does. I have more stories to tell. More battles to fight. More life to live. More love to give. More laughs to share. More gratitude to exude. More to learn. More to teach. More to be. I’m changed. I’m different. But by the grace of God, I still stand.