And now. A bunch of clichés have taken on new meaning.
Go toward the light.
NO! Stay away from the light. I can’t stand the light! It hurts my eyes! Keep the light away from my eyes! Please, no light! I wonder if that’s what saved my life—refusing to go toward the light.
It’s not brain surgery.
Um yes, actually, it is.
This is a killing headache.
Precisely. That’s the problem, see. It could have been.
She’s got a screw loose.
And now, I very well could! I have screws in my head for the rest of my life. And seriously, I think one is loose!
Can I pick your brain?
You certainly may. It’s easier than it’s ever been because now I have a FLAP on my skull!
My head exploded.
It did. Plain and simple, something in my head exploded (and it almost killed me, but I AM ALIVE!) I include this one because anyone who made it through reading the TWILIGHT series may remember Bella threatening, once in every several pages, that her head might explode. She’s got nothin’ on me.
I’ve been avoiding writing about this because I knew it would take a bit of time, and I am writing with pencil and paper these days, then transcribing edited stuff into the computer. This had to be an exception.
I’ve also been avoiding it because writing about this feels narcissistic. It’s all about me, not about some issue or some grand idea that I’ve been thinking about.
However, so many people have asked for this story, that it’s time to put it down in ink—at least cyber ink.
First of all, a bicycle crash cannot cannot cause an aneurysm, or cause an aneurysm to rupture. Most people (me included) assumed that my crash on Labor day (I did break my helmet but thought I didn’t injure my head) caused this. The surgeons were adamant that there was no relationship whatsoever. Ride on!
Sunday, December 6, dawned like a normal weekend morning toward the end of a semester. The exception was that it was December and above freezing, with dry roads and no snow which is extremely rare for Minnesota.
Freya and I went for a walk, and for a couple hours, I graded papers online. Then I got dressed for a bike ride with three friends. Due to the happy state of the roads, we were going to do the Lake Crystal Loop—a loop that totals about 40 miles from my house and back.
I was sitting in the stairwell, pulling my booties over my cycling shoes. Out of nowhere, a searing headache cracked open behind my right eye. In six seconds or less, something exploded from that headache—that felt like a firecracker going off inside my skull—and filled my head with blinding pain, the worst headache I’ve ever had, without exception. I staggered to my feet, shielding my eyes from light, thinking I was going to vomit. I leaned on the kitchen counter. The pain shot all through my head and down my neck.
Tom said, “Are you okay?”
“I don’t think so,” I answered. “But I have no idea what’s wrong. I don’t think I can balance or open my eyes in the light enough to go for a ride.” I made my way to the recliner and curled up in a fetal position. He brought me a bucket in case I actually did throw up, and a cold, damp towel, which I pressed it to my head and used it to shield my eyes from the light. I called Carol, Chris, and Tim, the friends I was going to meet for a ride, and left messages. All of them, I was sure, were already on their way to our meeting point. My message went something like this:
“I can’t ride. My head hurts too bad. It came on all of a sudden. But in case this headache goes away, which way are you riding the Lake Crystal Loop so I can meet you from the opposite direction? Can you send me a text with the info?”
When I could manage to focus my eyes, I said to Tom, “I hope this isn’t what an aneurysm feels like. I can’t imagine what else would hurt this bad or come on this fast.” I looked up aneurysm symptoms, and sure enough, this is what I found on MayoClinic.org:
“A sudden, severe headache is the key symptom of a ruptured aneurysm. This headache is often described as the “worst headache” ever experienced.
Common signs and symptoms…include:
- Sudden, extremely severe headache
- Nausea and vomiting
- Stiff neck
- Blurred or double vision
- Sensitivity to light
That was not happy news. I had ALL of the first five symptoms. The site also said, “Call 911 Immediately.”
I said, “I guess we better go the E.R.” But first I changed clothes. Tom actually had to help me there, too. I couldn’t balance very well. All I knew was that I have had too many favorite cycling clothes cut off my body in the emergency room when I have crashed (it’s happened a few times in my life). I was wearing my favorite tights and my new long-sleeved Nicollet Bike jersey. I wasn’t about to lose them to E.R. scissors!
Tom took me to the E.R. in Mankato, me curled up in the front seat with the towel on my head, for the coolness and to shield my eyes from the light, and clutching a bucket in case the threatening vomit erupted at any moment.
In the E.R., when I told the receptionist that I had all the symptoms of an aneurysm, they whisked me right in—no waiting—and they did a scan of my head within 45 minutes.
A kindly doctor leaned over me and said, “You do have a ruptured aneurysm. We’re going to airlift you to Mayo in Rochester.”
I remember asking if they weren’t over-reacting. I was told this was very serious and they weren’t wasting any time getting me to the neurosurgery experts. “I have to go to the bathroom first,” I said. They wouldn’t let me up! For the first time in my life, and what I certainly hope is the LAST, I had to use a bedpan. UGH.
As it turned out, the day was too foggy for the helicopters to run, so I had to travel to Rochester by ground ambulance. The sirens ran occasionally. I was drugged enough that I slept some of the time, but woke up enough to vomit and vomit, and then I slept some more. It’s not fun to vomit when strapped completely flat and immobile on an ambulance stretcher. The memory is fuzzy, so I’m not sure exactly how the EMT kept me from choking, but I survived it. He even turned the lights off in the ambulance so I didn’t have to have the towel over my eyes for the entire ride. Nice guy.
Once in Rochester, I remember Tom arriving shortly after we did, and I remember having dye injected so they could scan the aneurysm accurately. They discovered that the bleeding had basically stopped, but that the aneurysm itself was bi-lobed (two-lobes), so it could not be corrected by coiling. (This is a procedure where they snake a catheter through your artery from your groin to your brain, and release a coil of wire into the aneurysm so that it clots and seals off the risk of further leakage. This further confirms most adults’ idea that the groin and brain are too closely connected.)
Result: I would require full-on brain surgery, with an incision and a chunk of skull cut (Drill? Saw? Yes) out, lifted off, the leaked blood cleaned, and the aneurysm clipped with a small titanium clip that would secure no more bulging and no more blood leakage. Then everything would be put back together: with screwed-in titanium fasteners in the skull and staples in the scalp. Yowzer.
Brain surgery. That gives a person pause. And suddenly all those related clichés go out the window. “It’s not brain surgery.” Um, yes, it is.
I’m going to pause here and say that by this time, the surgery didn’t even scare us anymore. Tom, who didn’t leave my side, and I had met so many doctors—neurosurgeons and neurologists—to whom this procedure was routine. They put our fears to rest. Tom told me later that he was no longer afraid of the procedure; he was afraid of the time bomb ticking in my head; what if I didn’t make it until morning?
I had to sign waivers, of course. But I also didn’t want to be saved if I was going to wake up impaired mentally or drastically impaired physically. This is a sobering, life-changing issue to face. I’ve had surgery before, but never when I realized the results could be so touch-and-go, and so life-changing. Was I ready to die? I’ve had a good life. A great life. I could go now and know that I’ve done some good stuff. I’m happy with what I’ve done. I’ve made some huge mistakes, but I’ve spent the majority of my life trying to be kind, trying to be a good mom and grandma, trying to be good to the people around me and trying to help my students and friends have good lives. I’ve accomplished the biggest things I set out to do. My bucket list has mostly checkmarks on it. I could leave without feeling frantically unfinished. HOWEVER, I do NOT want to leave my kids, Tom, my grandkids,…my wonderful friends…I want to live. I want to write and ride lots more.
When Dr. Desmond Brown, one of the surgeons, came in to visit, I told him my concerns. He explained that he couldn’t take me into surgery without my consent to do everything possible to save my life and save my quality of life. However, “This is an elective surgery.” The survival rate outlook wasn’t very good without it, and survival without disabling repercussions was even worse, so of course Tom and I agreed to surgery, and to asking for every life-saving measure. We also felt more comfortable after his talk.
Some facts: 50% of people with ruptured brain aneurysms don’t make it to the hospital alive in the first place. Of the 50% who arrive alive, 40% still die or have major disabilities or changes in neurological abilities as a result. I don’t remember all the stats, but it turns out that for me to be at Mayo with “only a headache” was “extremely remarkable” (somewhere around 5-13% chance of that).
My surgery would be the first one in the morning. Every hour until surgery, a doctor or a nurse would wake me and check all neuro responses. This involves responding to commands with each hand and foot, arm, and leg, and shining a light into each eye to check reactions. I had the routine down pretty soon.
People. The gratifying thing during a time like this is awesome family and friends. As I mentioned, Tom, my partner, never left my side except when I was in the ambulance and he followed in the car, and when I was having a procedure—or surgery—done. He called my kids and close friends and set up a chain to pass information along. Nikki my daughter and Josh my son flew into Minnesota while I was in surgery, so I saw their faces as soon as I woke up. Tom’s son’s Ben and Dusty and daughter-in-law Ashley all came in the morning, too. Nothing beats that for feeling loved.
Surgery was a success. The ruptured aneurysm is clipped, and now I just have to heal.
Amanda Steele, my almost-step daughter, my kids’ step-sister, works at Mayo. She and her husband and little girl came to see me the first night, and as needed. Amanda was invaluable help and brought Tom some very welcome dinner the first night, too!
My friends showed up during the next ten days: I won’t list them because I was fuzzy-headed part of the time and I might forget someone.
The doctors and nurses kept telling me, “You’re doing so well!” But I wasn’t doing anything. I was just lying there. How could I be doing well at anything? Well, I guess it was all those odds I quoted above. The Neuro ICU at St. Mary’s, Mayo, in Rochester, doesn’t have too many brain surgery patients coming out of surgery like I did, I guess.
I am so fortunate, so very, very fortunate.
Do collective energy and wishes make a difference? Prayer? I’m hearing from people I know, but who are busy with their own lives—who take time to wish me well, to tell me they’re pulling for me, wishing me well. It matters. It really matters.
I also have to include this picture because it looks like something out of a Frankenstein movie or something, but it was simply the first time I got to have my hair washed after brain surgery, and it felt like HEAVEN!
My humanities class made a poster for me (pictured here). My response to this sort or embodies how I feel so humbled and overwhelmed by people’s responses to all of this.
It’s a difficult thing to be a week out from finals and be shut out of school. Nobody else knows which students have worked so hard and come so far…how can anyone else do justice to grading my students? Besides, I want to be there for the final moments! I want to hear their research presentations! It’s cathartic for everybody to realize how much they have learned…but I had to let go, let somebody else do it, and my more-than-capable buddies in the department did all my work. Thank you, Cassandra, Amy, Kirstin, Ray, and Anne.
So now, I’m healing. My daughter Nikki flew back to Minnesota again to help Tom get me home and settled. My scar is getting less noticeable, though I can feel the screws or the metal fasteners beneath my skin (yes, that is more than a little weird). I can handle that. I’m happy to be here.
Thanks, Ashley, for taking my staples out. 🙂
Limitations? Oh, yeah, I can’t work for at least four months. That in itself is an adjustment. Requirments: no stress, very little screen time (computer/iPad, phone screen, and no late-night grading papers. No lifting over ten pound (TEN pounds!!?? That’s hardly anything). No drinking. No cycling. None of this for three months.
I can’t ride my bike for three months? Yes, I asked Dr. Chris Copeland, “Can’t I just sit on my bike on the trainer and spin if I keep my heart-rate down around 110?” He responded with a wry grin, “I’m getting to know you, and I think that if I give you an inch, you’ll take a mile. So no. NO biking whatsoever for three months.”
No lifting over ten pounds. Again, I asked Dr. Copeland, “So I can do ten-pound bicep curls with each hand, right?” Response: “No! Five pounds, five pounds. Ten pounds MAX.” It’s hard not to push the limits. I guess he did “get me.”
I’m always used to pushing my restrictions. I break an arm and sit on the trainer and work like crazy. This is different. It’s my brain at stake. I guess I do have one. They didn’t open me up and say, “Nothing in there. Just close ‘er up.” So I better listen. I want to heal. That means I can walk. A lot. And read (paper books, not online or Kindle), and write (paper, again). No teaching, no grading. Very limited email and Facebook.
I’m happy to say that reassessing helps make it easy to spend time on important things and with important people…family most of all and my wonderful friends. Without a teaching and grading schedule, I don’t feel cramped for time with people. It’s lovely, actually.
Here I am at lunch with my brother Bill, his wife Cathy, and me and my Tom on the right. Bill just had foot surgery, so this lunch was a big deal for all of us. We had a blast.
My cousins came up to visit (much fun), and my friends have been stopping on (stay tuned on Facebook).
Thank you, everybody, for being so kind and supportive.