Hellobee

Telling a story of a time in my life I have no actual recollection of is very strange. I see my body existing in space in photos and videos from earlier this year but I have no memory of it. A few weeks before my 31st birthday in March of this year, I had a brain bleed from a tangle of blood vessels there that were poorly formed since birth – things like stress and especially pregnancy are known to increase the odds of it bleeding so it makes sense that it happened at this time. We were 5 days away from traveling back over the ocean to the unknown, just days away from beginning to fix up and sell our house, 5 months away from having our second child, and I was having a lot of trouble keeping my stress down. We were counting down the days to our move from Thailand back to North America. My husband likes to describe the tangle of blood vessels that were in my brain as essentially a highway flowing onto a residential side street which I think is pretty accurate.

My brain bleed occurred mid-month and by my birthday at the end of the month I was conscious again, but as my family and I have started to frame this, I was not “recording” – which is to say, I was conscious part of the time, but my brain was not saving new memories. This may be due to my recovery process or the high dose of medication I was on since when I went to Bangkok, they took me off one of them and lowered the other and I immediately improved and even started making memories again.

The doctors decided I was not fit to travel abroad so my mom stayed in Bangkok to help me and kept my family fed and cared for while I was there. Bangkok hospital was the long haul. As far as the timeline goes, it was legitimately long since it became apparent early on that I’d need to have the baby in Bangkok and my pregnancy needed to play out before we could tackle the AVM at all. I had a great baby doctor deliver our son by scheduled C-section three weeks early. But then the doctor and supposed expert in my brain condition who we had chosen the hospital for, backed out of my surgery the day before because my husband was “too invested.” This was devastating since I couldn’t imagine my partner not being invested in my brain surgery and I was horrified at the idea of a doctor going into my brain who didn’t want to be there. When he didn’t show up for the surgery the next morning (yes it was that close!), we knew it was off and we immediately made plans to move to the other international hospital in town. My husband had a providential phone call with a woman in the area who recommended a doctor at that hospital who not only was the former professor of the doctor who had backed out, but also a female powerhouse. She did the AVM embolization which prepared us to travel back to MN and get a final surgery, and she truly was fantastic.

That flight went so smoothly. Two hours south of my husband’s parents’ house, I prepared for the final surgery. I felt so much more peace knowing that the Mayo Clinic offered some of the best care in the world, the doctor was supremely confident and I was undergoing a very standard procedure there. I also spoke the language there and understood the customs which I’m sure helped immensely. My husband was with me before it started and we talked and prayed but overall I was pretty lighthearted. Afterwards, the doctor reported that it was a success and I had about a week of swelling from the pins used to hold my head completely stationary, but from here on out we are just waiting.

It can take anywhere from 1-3 years for the AVM to close up from the radiation procedure, and in the meantime I am restricted from doing anything that creates “valsalva” which feels unfair at times, but then again so does life. I lived. So many others don’t survive illnesses or accidents but I did. It’s a long game but I plan to live so much longer that it pales in comparison. It’s a beautiful thing and I am grateful.

So six months and four hospitals later, I still had (and definitely sometimes still have) mental confusion after my return to North America, but I am realizing that I am more cut off from those early memories in the States now that I am improving steadily. I still struggle with memory loss but I feel good so much of the time, and if I rest enough I feel like I’m thriving. Just this week I started remembering specific things I’d came upstairs to grab even after getting sidetracked on the way which is entirely new for me.

To be honest, I am torn between desperately wanting to be able to recall everything that has happened and being so ready to move on with life. Overall, I’m definitely more motivated to recover and also grateful for the time I do get than wanting to focus on the past. My memory is still recovering, which if you look at the bright side offers me a partial blessing because I am so quick to forget grievances and move on.

I am grateful to be here, wherever I am.