Healing: 1 Year

Last year on Easter, I was sitting in the neuroICU at UCLA. My goodness time has gone by so fast! I can’t believe it has been a full year since my surgery. During my final post-op with my neurosurgeons, they said, “expect to feel better in 8-12 weeks….expect a significant improvement at 6 months….and expect full healing to take 12 months.” Here I am at 12 months!

SCDS is a degenerative syndrome. There is no cure for it. Surgery doesn’t make everything all better. You can’t just go back to normal again. Surgery isn’t about fixing things and getting back to life as usual, it’s about trying to make sure nothing gets worse. Big difference.

As I have gotten further into my recovery, I began to notice that it was hard to tell where my SCDS symptoms ended and brain surgery side-effects began or when healing ends and the “new normal” begins. Lines blur and all I know is that things are different now. Good, but different.

I write this as a person who is thankful to have received the help that I have from surgery, but who is also very much struggling to accept the idea that the “normal” I used to know will probably never return. There is a mourning over the loss of what used to be, and likely will never be again. That’s a big deal. Anyone who has been sidelined with a chronic condition will resonate with this (fellow infertility sisters perhaps?).

After all the dust has settled, I have realized that a few things linger. These are things that have not changed much over the last 12 months. They’re here, probably to stay. And I’m slowly making peace with that. Some of them are SCDS symptoms that just never fully resolved and some of them are probably due to the surgery itself.

-Barometric Pressure induced headaches, dizziness & cognitive disorientation. Bottom line, I never feel well when storms are approaching or leaving the area. In Colorado, this happens several times per week, if not several times per day haha!
-Cognitive disorientation in high stimulation environments

-Difficulty with short term memory, focus and concentration
-Nerve Pain and numbness
-Low-grade headaches 5-6 days/week
This list of things that remain is far better than what I was dealing with before surgery, so I will happily accept them as part of my new normal. And you never know, some things may improve in the future, like the headaches now that I am on the Migraine Diet (I’ve gone 7 days without a headache so far! May be coincidence…may be the diet actually working, too early to tell). And if we ever move to a place with no barometric pressure changes (Honolulu is #1 on the list haha!) then I will most certainly feel better. 

    Recovering from this whole experience has had it’s ups and downs. It’s been a long year full of tears, slow walks, frustration, gratitude, struggle, relearning things and adopting to a new way of life. I don’t have a story where I can say “Look at me! I’m 110% better now!” But I can say “I am grateful for the healing work God has done in my life and I am slowly learning to accept and embrace my limitations while praising God for bringing me this far, which is much further than I was a year ago. Amen and Amen!”

    David and I took a quite trip to the mountains to celebrate this milestone and to also celebrate the fact that we finally have a house under contract! Wooo! We booked a last minute condo on the river just outside of Rocky Mountain National Park. We spent our time lounging around, fishing, sitting in the sunshine, eating good food, hiking and looking at wildlife. It was a great way to get away and celebrate together all that God has done for us.


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