Chris Whedby’s journey with AVM

I was eating a nice hangover brunch in February 1997 when I got a “something’s really bad is going to happen” feeling. The next thing I remember is a fireman asking me who the president was. At some point on the way to the hospital I realized that I had had a seizure, but was too disoriented for that to have an emotional effect on me.

In the ER, I was treated poorly at first. I smelled like I stayed up late drinking beer, which I had. A good friend was visiting for two days, and we went out until 2:00 AM. I’m sure the nurses thought I seized due to alcoholic withdrawal. They sent me for a CAT scan, and shortly thereafter, they became very, very, nice. I was still fuzzy, but I began to get worried. A few minutes later, a doctor came in and explained that I had an Arteriovenous Malformation (AVM) in my left parietal lobe. (For any ER nurses out there, remember this. Y’all treated me like this was my fault.) I was given IV Dilantin, which really hurt. I was then told to go see a neurosurgeon, and a friend came to pick me up.

I went to see the neurosurgeon the next day. He explained to me wham an AVM was, and the treatment options. The first question I asked was “Have you done surgery on an AVM before?” When the answer was “no,” I basically got up and left. Someone had to be his first, but it wasn’t going to be me. Luckily, a friend of a friend was the president of the nurse’s union at the Oregon Health Sciences University hospital. She asked around, and found me the one doctor in town who specialized in AVM’s, Dr. Stanley Barnwell.

Upon consulting with Dr. Barnwell, we decided the best course of treatment was a two step procedure: a cerebral embolization, followed by Stereotactic Radiosurgery. Dr. Barnwell said he had done this many times before, and didn’t seem the slightest bit worried. I guess I wasn’t feeling too worried myself, at that point.

The next week, it was time for the embolization. I was partially awake during the procedure, but all I remember is him tapping at the catheter entry point near my groin, and a couple of jokes he told. In retrospect, I know he was checking on my brain functioning. Recovery was fine, and I went home the next morning.

Two or three days later, I went in for the radiosurgery. They put a halo on me and had me take a CAT scan. I cannot describe the pain. Neither valium nor morphine even touched it. It felt like my head was in a bench vise. (I later told my female friends that giving birth was nothing compared to this, and I didn’t even get a baby out of it,) After a CAT scan, I waited…and waited…and waited for the computer to process the information needed for the procedure. Finally, they were ready for me. My halo was bolted to the table, the docs left the room, and a robot arm began to circle my head. Later, the halo was removed (thank God,) and I went home.

The next day I looked like I had been beaten up by Muhammed Ali. I could barely open my eyes, as my face was so swollen. My friends looked at me with horror.

Then, everything was fine for the next five years. I thought I’d gotten away scot free. I went off seizure meds after three years of no symptoms, and all was good. Then, in 2002, I had a big, bad generalized clonic-tonic seizure. I went back on meds, and had a horrible couple of years going through one seizure med after another. One made me so ill I had to curl up into a fetal position with the lights off; another messed up my blood lipid profile, tripling my overall cholesterol; another gave me migraines. Finally, the one that worked was lamotrigine. I’ve been stable on that med for almost ten years.

I was in my second year of a Masters in Psychiatric Nursing Practitioner program when things started to go wrong. My attention and memory began to slip, and I became dyslexic. To move on to the next level of the program, I had to write an essay. That’s when I knew something was terribly wrong with me. I just couldn’t do it. I managed to spit out a couple of poorly written paragraphs, but it was rejected, of course. Then it started to go really wrong.

Soon, I couldn’t follow a conversation, would forget what I was looking for, would have to rewind movies several times to remember the plot line, etc., etc.. I was sure this wouldn’t last. I have a B.A. in Psychology, and was well read in brain science. I knew the brain was somewhat plastic, but was unable to follow basic cognitive rehabilitation. That’s when the depression spiral set in.

I had always prided myself on my ability to take in, process, and store large amounts of information. I had a 4.0 grade point average in nursing school, and didn’t even have to work very hard. Now I couldn’t remember how to add and subtract. I could no longer go skiing and rafting with my friends, couldn’t converse with any true intelligence, and began to sleep 12-14 hours per day. Seizure meds plus depression were shutting me down. I could still do things like work on my house at that point, but could only work a few hours per day. redoing was the last major project I did until 2013.

I got SSDI in 2008 after accepting I wasn’t going to recover fully. My depression continued until I just couldn’t function. I had a two good friends left, and they would come over every few months to reorganize my house. It looked like I was a hoarder, but it was just complete disorganization. They saved my life.

Then beer entered my life. Due to my situation, I was a cheap drunk, but was becoming a drunk nonetheless. I drank for a couple of years, didn’t for a year, went back for a year, and I’m now off the stuff for good. It wasn’t a good idea, but it did get me through the really bad part of my deteriorating cognitive function. I never drank during the day, though.The combination of being a cheap drunk, and being sober during the day helped keep my brain from turning into total mush.

About two years ago, things began to stabilize. Before my injury, I was an extremely avid reader. I still can’t make tin through a novel, but I began to read, and comment upon, news and opinion sites on the web. At first, I couldn’t make it through a one page story, and what comments I wrote were disorganized, and had very poor grammar. Very slowly, I began to read longer and more complex articles, and my commenting was becoming more cogent. After two years, I began to be followed by other folks, and was gaining a reputation as one who would make informative and to the point comments. What these folks didn’t know was that it would take me an hour to write something that others could write in five minutes. I had to constantly look up words for spelling, and would spend minutes deciding whether a comma was needed, or not. (Should I have put a comma after “needed”?)I also knew what I wanted to say, but would lose the word, and had to describe the meaning, and then search for the word on Google, etc.. This was some of the best therapy I have had.

At the present, I’m up to about 75% of my previous cognitive ability. I still can’t read a book, but if I give myself enough time, I can write fairly well. I sold my house and bought a 600 square foot condo, which is manageable. I’ve made a new friend, and feel like winter is turning into spring.

The next step is what I am doing right now: Writing an essay for the first time in ten years.

It isn’t hopeless. You just have to meet and accept the person you are now. This person resembles the one you used to be, but is not the one you are a now. Your skill set will have changed, but you will still have one. Your old friends may not have been able to cope with the loss of the person that they knew, but new ones will appear if you are open to the possibility.

Right now, life is good. I’m pleased to have found BIRRDsong. The next step in my recovery is to help and befriend folks who are going through what I’ve gone through. I know intimately the depression, grief, and hopelessness of losing a chunk of one’s life. I was a counselor for twenty years before my injury, and I hope to use the skills I still have to be productive and helpful. I have spent much my life in service to others, and I need to get back to that in one way or another.

Thanks for reading, and I hope this will be of some help to someone.

Chris Wheby