Two Crows warned for months there was something wrong with him but he couldn’t put his finger on it. Then, in early February he suffered a thunderous headache. He struggled in increasing pain to care of his disabled clients. On the third day his girlfriend for ten years, Aubrie, came home from work to find him lying in the dark. His speech was garbled His right side was weak.
A sterling musician
, he couldn’t play his guitar.
The next morning, Aubrie called to tell us that Two Crows, our 30 year old son, suffered a stroke
and was in the hospital. In shock and disbelief we drove three hours to be by his side.
The neurologist explained to us all the unusual cause of the stroke: a berry-shaped cluster of malformed, thin-walled vessels, prone to bleed, that Two Crows had been born with. A very rare condition called CAVERNOUS MALFORMATION.
Unlike inherited versions, with multiple malformations, his was considered singular and not genetic. Repeatedly, nurses and doctors marveled he was alive and not more impaired because the location of the bleed, they explained, was deep in his brain in a very crucial area: the brainstem
Physical therapy was deemed unnecessary and after five days in the hospital Two Crows was sent home to recover. In March, the neurologist informed us that the Cav Mal must be removed from his brainstem to avoid catastrophic deficits
, or death
from another probable bleed. By that time, we had learned of the best person, perhaps in the world, to do such an intricate, high-risk surgery if it must be done: Michael Lawton, President, CEO and Chief Neurovascular Surgeon of the largest neurological center in the world - Barrow, in Phoenix, Arizona. Thankfully, Doctor Lawton determined the malformation was accessible and that he could successfully remove it. Although we feared the monumental consequences if anything went wrong, the May 24th surgery couldn’t come soon enough.
Struggling financially, Two Crows went back to work in early May, but as surgery neared began to feel the pain, dizziness and weakness of another bleed. He stopped work and just tried to stay alive until we got to Phoenix, fearing the cabin pressure of the plane trip from Oregon. Day by day, his symptoms increased. In Phoenix, while filling out admittance paperwork for St. Joseph’s hospital, his hand became too weak to write. He was rushed to emergency, where an MRI revealed another bleed. Dr. Lawton determined the surgery could still be next morning as planned, but because blood had rearranged the motor area in his brainstem, the Kawase approach would be used; an access from in front of the ear to the deepest part of his brain, instead of behind the ear as originally planned. We understood his brain lobes would be retracted instead of cut through. His auditory organs would be smashed flat for the bypass.
“I don’t want any dramatic goodbyes as I’m getting wheeled in there,” Two Crows said to us - his mom, his dad and his Aubrieanne, making us promise.
He was in the operating room for 15
Tears of relief when Dr. Lawton pronounced the surgery a success.
When we finally got to see him in ICU, he was on a breathing tube, sedated, with a stapled incision running from the front of his left ear to the top of his head. He was punctured and attached to tubes, wires and beeping machines; his entire head covered in color-coded, seizure detecting electrodes. His left eye was bruised and swollen, his left arm tied to the bed.
This is when the nurse revealed to us that he had no response on his right side. No response to pain stimulus applied to his fingers or toes. He could not move his right arm or leg, at all. The anesthesiologist said he’d needed a lot of anesthesia because he’s a big man, 6’4”, nearly 300 pounds and that that may be why he wasn’t able to breathe on his own yet. He had not suffered another stoke on the operating table, so the cause for his paralysis
His dad and I were accepting that the rest of our lives would be devoted to his care. Aubrie said the condition changed her life plans with him not one whit. We just longed for him to be able to breathe on his own, to wake up and to live. To be able to open his eyes and to be able to speak to us.
The next day brought no improvement or change, or the next day, or the next. We hung on every word of the doctors and nurses who promised nothing but said youth was in his favor. Day after day we listened to his breathing machine, watched his chest rise and fall, held his hands and petted him, talked to him.
When a diagnosis of bacterial pneumonia came, we began to unravel. Aubrie was falling to pieces spending 24 hours a day with him.
On day seven, we learned he couldn’t have the breathing tube down his sore throat and scabbed lips much longer and was heading for a temporary tracheotomy. It would be a more comfortable connection to the breathing tube and allow him to come out of sedation. Then, on day eight the ICU doctor thought Two Crows might be able to breathe on his own and was willing to pull out the tube. If he couldn't, it would have to be reinserted which would be traumatic. We left for half an hour as instructed. On return, we huddled together in fearful anticipation just outside his door. When a nurse beckoned Aubrie, saying Two Crows wanted her, we held our breath as she crept behind the curtain. Then we heard him speak to her:
We held each other and wept.
Two Crows’ reality was shattered. He asked his dad and I our full names, because he thought us imposters. He thought he’d been abducted by the nurses to their apartments. He just knew he could walk, not comprehending his right side couldn’t move. It was difficult to determine how lucid he was. He sang Native American Church songs. He obsessed about going to his beloved swimming hole with his favorite, famous bands. He thought the medical equipment and tests were fake and people were trying to kill him and expected Aubrie to free him. He couldn’t swallow correctly and there was trouble positioning the feeding tube inserted through his nose into his stomach, which was accidentally pulled out moving him, and difficult to replace.
After a complicated, surreal week in which Two Crows’ humor and grace was mixed with total confusion, one spitfire nurse fought to have him sent directly from ICU into the hospital’s rehab
because he was young and strong, his pneumonia was better and she felt stepping down to a regular hospital room was a waste of time. We thought he knew where he was going, but he was traumatized, thinking that his room in rehab was an office of some kind and we’d just left him there. The tears he’d shed being wheeled there in his bed were because he thought he was going home. That night, he pulled out his feeding tube, forced open some ice packs and drank the water from them, and broke the tv extension arm. He didn’t believe in the the test results from a camera threaded through his nose into his throat, showing he couldn’t swallow right. Taking anything orally, especially water, risked aspirational pneumonia but he didn’t believe he needed thickened water and puréed foods. He obsessed about water
in disbelief that we couldn’t understand how thirsty he was.
Looking at pictures of family, and forest, and lyrics from Tool and Pink Floyd we hung up made him very emotional as did everything else.
To our amazement, his right arm and leg started making small movements. The physical therapists got him a wheelchair which was too small, as were the beds (like every desk, chair or seat he’d ever experienced). He obsessed on the pain of sitting in the wheelchair before a bigger one was supplied, and about water, water, water, water. Or Squirt.
“I’m going to jump out the window and impale myself on a bottle of Squirt to show you guys how thirsty I am,” he threatened, half kidding.
He made Herculean efforts to regain movement with his therapists’ help. He sweat bullets learning to stand with the help of a leg brace. We watched him learn to walk for the second time in his life; shaky first steps, graduating to a walker. We were thrilled!
Cognitively, he was starting to line up the puzzle pieces. When he and Aubrie were alone at night he began to ask about the timeline, trying to understand time lost while unconscious, trying to make sense of what had happened and what was happening.
With grueling determination
, Two Crows learned to finally walk with a cane. Sometimes he was too exhausted, or dizzy, or in pain for a therapy session and had to learn to pace himself. As he became more himself, he offered heartfelt apologies to the staff for his attitude but they liked him a lot because he’s smart
. He told us that if it weren’t for our loving support, he would have given up. He cried for a young man in rehab, alone, and far worse off than him. Our beautiful son, the light around which our family seems to gravitate, was returned to us.
At the end of June, I pushed him in a wheelchair through the Phoenix airport, then, with a cane, he walked himself onto the airplane headed home to Oregon.
The ten days planned for Phoenix had turned into forty.
I cannot find a way to describe the virtuosity of the doctors, nurses and therapists of Barrow and St. Joseph’s. What we witnessed left us humbled and in awe. They possess our undying gratitude
Thankfully, Two Crows’ insurance through work made it possible to utilize the prowess of Dr. Michael Lawton, who is a very, very “big deal”. Our hearts break for the uninsured and underinsured in position of needing specialized care. By the loving generosity and support of family and friends we were able to be by Two Crows’ side as he took this monumental journey.
Amazingly, Two Crows is back at work. He’s worked starting in high school. In the last several years he’s worked as a med aide in nursing homes and is now a Support Advocate for disabled folks who need help with things like shopping, budgeting, appointments and transportation, because he’s a caring
kind of guy. He and his dad are members of the Karuk Tribe
Two Crows is a talented musucian
. After playing the sax as a kid he wanted to play guitar and his guitar instructor said he’d seldom seen talent like that in 30 years of teaching. Two Crows played in bands and currently records his own music. Music is crucial
to his life.
We hope he can regain the speed
he enjoyed before the cavernoma. He’s improving all the time.❤️
(I apologize, son, for the sound quality of your recording on the video!)
Since the surgery, he is adamant about finishing the few remaining math credits for his associates degree and getting into the U of O, something he’s wanted since participating in summer TAG programs there. Life got in the way, but life
Having missed half a year of work, Two Crows is struggling financially and now has thousands of dollars of medical bills. He couldn’t ask himself, but I have a hunch those who knows him will be happy to lend him a hand, and so I’m asking for your help today to get him back on track. Thank you
, deeply, each and every one, for your love and kindness.