Category

The Brain

Four

One of the first things I do each morning after getting up with the kids (who needs alarm clocks when you have a William?) is open up the Timehop app on my phone. This isn’t an ad, I’m not being paid, promise. I just like to see what we’ve done in years past, see if there were any significant milestones or occasions that we’ve forgotten about. Mostly I’m in it for the baby pictures.

This morning was just like every other morning in that routine and then I saw a picture that, in some far corner of my brain I knew was coming, but that I had mostly forgotten about. Because 4 years ago today was our worst day. It was the day that Eli crawled head first off a hotel bed and got a brain bleed.

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Now, this is significant in two ways. First, the year after this event, when I was in the thick of PTSD, I lived and died by the 23rd of each month. It was a marker and March 23rd was the most significant. I thought I would always feel that way. I’m thrilled to have been wrong. Had the picture not popped up on my timehop, I don’t know if or when I would have remembered. And that is nothing short of amazing. The person I am now can scarcely recognize the person I was the months before this happened and the last 12-18 months after.

That is a great thing.

The other thing that is significant is that we are four years out. Eli is doing great. Great enough that we forgot that this happened. It will always be a part of our story, but it’s no longer in the prologue.

I had a conference with Eli’s preschool teacher last month and she has absolutely zero concerns about him transitioning to kindergarten (kindergarten! My baby!) in the fall. And we have an MRI that showed no residual damage. Maybe everyone else knew this would be the outcome, but it wasn’t always so clear to us or to Eli’s physicians.

And so 4 years older, wiser and approximately 10 million times happier, I’m glad to say that everything turned out unimaginably great. Eli is great. My mental health is great. The fall and the bleed and the days in the hospital are things that happened and they were terrible, but here we are.

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And we are great.

5 Years

Five years ago today, I had brain surgery.

It’s funny how even after 5 years that doesn’t sound any less crazy. I have done a pretty good job of hiding those memories away, the anxiety, the recovery, all of the unpleasant parts, in the very back of my mind. I rarely access them because it wasn’t a particularly pleasant time. I’m a completely different person than I was 5 years ago and so I look back upon that day almost as though it happened to someone else instead of me. Yes, I have the same scar as that girl, but I am a completely different person.

Most of the emails I get from other people with Chiari Malformation always ask me the same questions. First, they ask if I had the surgery (yes). Then, they ask who my surgeon was (he’s retired, sorry). Then they ask how I am today and if the surgery was worth it.

I don’t have an easy answer for those last questions.

I am better today than I was 18 months ago, I am worse than I was 4.5 years ago. I would argue I’m better than I was pre-surgery in most ways. I can laugh and cough and sneeze without feeling like my head will literally explode from the pressure. My balance is pretty average these days and my left hand has pretty good dexterity and strength, though if you measure it, it’s definitely not quite up to par. I don’t have nystagmus anymore and I have days without headaches. But I do still have them. And a few other holdovers here and there.

Was the surgery worth it? Maybe. There are just so many unknowns. Would my Chiari have continued to progress if I hadn’t had the surgery? Maybe. Would I have been able to tolerate pregnancy and deliver Elijah without a c-section? Maybe. Would I be where I am today? Maybe. I can’t say for certain if it was worth it, because I don’t know what the alternative outcome really looks like.

I can say that there were some benefits to the surgery. It helped confirm the career path I was on and have now completed. It has allowed me to connect with and have more compassion for my patients. It has improved my quality of life in some physical ways and has connected me to other people like me, which has further improved my quality of life in a more abstract way.

Yes, I still have headaches. Often severe ones. I am not without symptoms as I had hoped, but they do not inhibit my life like they used to. I’m working, I’m caring for my son. No one I work with knows about my medical history because they don’t need to- because it doesn’t have an impact in the way it once did. If it weren’t for the scar, most of the time it would be as though it never happened.

But it did. And if I was faced with the situation over again, ultimately, I think I would make the same decision, but I wouldn’t make it lightly this time either. Though I realize that not everyone would I agree, I like myself and my life more now than I did then. Much has changed in 5 years, and for that, I am grateful.