Yes, I just had brain surgery. Again. I'm almost a professional at it.

Last month I had my #13 and #14th hydrocephalus related surgeries. Nine of these 14 surgeries have been since 2012, and every one of them have come with unique circumstances and challenges. Even though my husband and I have always tried to take them in stride, we make a vow to change or learn one thing each time that might make the process a little bit easier. Some of these things have been really practical, and other things are simply for comfort. We want to share some of our routines with you all, in hopes that they might help anyone else out there who is dealing with a lot of hospital stays and surgeries. 

• My neurosurgeon is a three hour drive away from us, so anytime we go to see him, for any reason, we both take overnight bags, even if I think I’m doing ok. This is just a simple thing that eliminates the stress of the unexpected. 
• My husband stays with me in the hospital, so early on in the admitting process, we let the hospital staff know this - so they can do everything that’s possible on their end to accommodate his stay. This often makes a difference in the size of hospital room we end up with, which makes an impact on how comfortable we both are. Don’t be afraid to (kindly) ask for help with these simple things. 
• Several surgeries ago, Clifton discovered that if he makes a point to get away from the hospital a few times during my stay, it helps him tremendously from a mental aspect. He always takes his yoga mat, and has found a studio that he likes near the hospital. If I’m stable and resting, it’s good for him to get out and do something active that lets his mind have a break, and helps him rest. Remember that your caregivers are going through this traumatic experience as well, and try to plan ahead for their comfort.
• If you have a lot of shunt revision surgeries, note what your normal pain patterns are, and keep track of where you are in relation to your baseline. We’ve made a set routine that we try our best to follow in terms of getting up and walking, tapering off IV meds, and check points of how I’m usually feeling at certain points after surgery. Then we adjust as needed. Obviously, you don’t have any control over how each surgery will go, but the bottom line is, take an active role in your recovery. Communicate with the hospital staff and do your best to challenge yourself. This may make a difference in the experience you have, and when you get to go home. 
• When we return home from the hospital, we also have a routine. We have a tradition that we go for pedicures on the first day - this is a quiet activity that gets me out of the house - we just cover my head and get out. It’s a fun chance for us to celebrate and do something fun together. I’ve gotten some pretty funny looks when showing up at the nail salon with my head in a bandage, but it’s worth it! It always makes me smile.
• We also try our best to gather informally with some of our closest friends either at our house or out for dinner after returning home from the hospital. Again, these things help me to feel comforted, but also are activities that really push me in terms of pain and energy levels — to stay challenged. If the activities you choose are things you really love, with people you really love, it makes the effort worthwhile. We also know that this tradition means a great deal to our friends - who feel helpless as they watch us go through this frustrating journey. 
• This seems obvious, but do what helps you feel better during recovery. For me it is cleaning up my nutrition, tracking my water intake, and practicing meditation and music therapy. So, if instead of focusing on those things, I spend every day watching movies, eating junk food, and sleeping all day, I get really discouraged. Know your body and your mind, and control what you can control.
• I journal extensively during each recovery process, and that has helped me to find patterns in my healing timelines, know when it’s safe to return to work, and know when I should push myself. Going back to reference prior surgery recoveries once I get all the way through them also reminds me how strong I am, and what is truly important. 
• Lastly, have one or two people you can completely rely on - people who are close enough to you that you can be 100% real with them. Those are the people who will catch you when you fall, and hold you when you cry. Because at the end of the day, it’s really really hard. This is not a road that everyone travels or understands. Be strong when you can, but fall apart when you need to. 

Live and love between the madness. 
Here’s to the relentless pursuit of everything that’s important. 
Stay strong, my warriors.

​Am