Immeasurably More

3.5 years ago, I remember sitting in my quiet office working on editing photos and answering emails. It was an unremarkable day, nothing out of the ordinary had happened until I heard a sound. At first I wasn’t even sure what the noise was. The wind? A cat rustling around in a closet? Water?

Whoosh. Whoosh. Whoosh.

I sat still. Held my breath. There is was again. Whoosh. Whoosh. It took a few minutes to realize the sound was coming from inside my own head. Like it was inside my ear or something. Like something was rhythmically whooshing past my ear, or inside my ear. I looked in the mirror to see if my ear looked different or swollen. Nothing. It looked perfectly normal.

A week later, the noise was still there. I saw my doctor and she looked at my eardrum to see if maybe it was a weird ear infection. “Your ear looks perfectly healthy,” she said. “Try a warm compress and ibuprofen,” she said. Ah, if only it had been that easy.

What resulted from the whooshing in my ear was months of CT scans, MRIs, cancer scares, MRVs, blood tests, hearing tests, neurologists and ultimately a diagnosis of Superior Canal Dehiscence Syndrome. SCDS is essentially when a small balance canal under your brain, the Superior Canal, wears away or develops a hole in it and begins to cause you all sorts of issues. In time, more symptoms developed; chronic vertigo, extreme sensitivity to sound, ear pain/fullness, imbalance, coordination issues, brain fog and eventually brain surgery out at UCLA. The vertigo and imbalance were by far the most debilitating symptoms. They made dealing with a little whooshing in my ear seem like a piece of cake. I remember waking up from surgery and immediately noticing that the vertigo was gone (Hallelujah!) but the pulsing in my ear was still there. bc347-10646965_10206248574315767_3820058040828197190_n

Weeks after surgery, my surgeon told me that the pulsing was just due to swelling and that it would certainly go away since the surgery was successful. After all, surgery resolved all of my other symptoms, it should resolve the whooshing too. I waited and I waited. Months went by and the noise remained. Years went by and the noise remained. This summer, the noise got so loud that I began to lose my hearing and go deaf in my right ear.

Eventually I saw my local neurotologist again and asked to read over my CT and MRIs again to see if anything had been missed. Indeed something had been missed. A tiny bone called the Sigmoid Sinus Plate was missing. Worn away, just like the Superior Canal bone had. There is a large vein right next to the Sigmoid Sinus plate so the noise I was hearing was blood flowing through my vein. We knew this meant another surgery was in my future. David and I went out to UCLA to confer with my first surgeon and he agreed that the Sigmoid Sinus plate was a potential cause for the noise that I continued to hear. He urged me to move forward with surgery.

Surgery was last Tuesday and I got to stay in Colorado this time, yay! In the weeks before surgery, I was calm and confident. On the morning of surgery, that all went flying out the window. Fear and anxiety crept up and pestered me the entire time I was in pre-op. I made David pray a dozen times over me and we continually read Scripture together which was my only source of comfort. My primary fear was that this second surgery might interfere with the first. That it would knock loose my bone graft and I would wake up with vertigo all over again. Thankfully the anesthesiologist swooped in and doped me up before I had a chance to back out and run to the car. 😉

Surgery commenced and before I knew it, I was in the post-op recovery room. I sat still for a long time and just listened. There was absolutely nothing to listen to. There was no pulsing, no noise, no whooshing. Quiet. Peace. Silence.

Before I had surgery, I heard that noise for 1,191 days. That’s 123 million times that I heard the whoosh in my ear. 123 million! It’s amazing I didn’t go insane.

I have now gone 1 full week without hearing anything in my ear other than fluid due to swelling and inflammation. It has been utterly quiet and utterly wonderful. Happy doesn’t even begin to describe how I feel. I am absolutely overjoyed. God is so good.

My recovery has been a breeze this time around. Even though I still had a craniotomy, they didn’t mess with my balance canals so my balance is great, my thinking and cognition is clear, I can concentrate and focus (it’s amazing what your brain can do when it isn’t subjected to hearing it’s own heartbeat all day long) and my energy is coming back. The only thing I’m struggling with is pain and my ear being suuuuper clogged. It gets worse as evening approaches but it’s getting a bit better as the days go by. I should be back to driving soon and living my normal daily life.

I am so SO glad that I didn’t allow fear to stop me from having this surgery. It was so tempting to think “I’ve come this far, I don’t want to push my luck” and back out of surgery. That fear could have prevented me from knowing the beautiful silence I know right now.

I think sometimes suffering can give us a bit of PTSD and we become quite risk-adverse. We don’t want to push our luck, take a risk or go out on a limb. Because what if that limb breaks? What if we fall to the ground? Those what-ifs can sideline us. Here’s the thing though – – – hard things are going to happen regardless. I could hit my head tomorrow and have my vertigo and the whooshing noise return instantly. We can’t insulate ourselves, stay away from all risk and hope that nothing bad happens to us. That’s almost a guarantee that something bad will happen! God isn’t going to reward us for playing it safe all the time. So every now and then we have to shake off the fear and step into the unknown. Who knows what blessings await! God is able to do immeasurably more than we can think, dream or imagine.Photo Nov 13, 10 32 15 AM

 

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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.


    Right-Side Up

    I do great in crisis situations. I am rarely rattled or scared. I usually know what to do, where to go and how to get there. I don’t hesitate and I seldom panic. As long as that adrenaline is pumping through my veins, I’m level-headed and perfectly fine. It’s usually after the crisis that I start to fall apart. Inevitably this is due to my poor adaptation to change which has been a lifelong challenge. Unfortunately, crisis and change go hand-in-hand.

    When the change starts to settle in after the crisis…. the new routines, the new way of life, the memories and emotions that need to be processed…that is when I come unhinged. And believe me, the changes have come flooding through these past 2 weeks.

    David’s health of course is one of the biggest changes. My strong and resilient husband has been set back a few steps. I still wake up at 3am worried that he has stopped breathing. The blood thinners make him cold all the time. I am always looking for the next sign that suggests we need to rush back to the ER. It’s going to take some time for the PTSD to wear off. I actually read a study recently that said the majority of pulmonary embolism survivors exhibit signs of PTSD. It makes sense…especially when you realize just how close we came to losing David. It’s going to take time for our heightened levels of fear and paranoia to come down a notch.

    Then comes the fact that we sold our house. The second I went in that hospital with David, I never returned to our home. Other people packed our boxes, moved our belongings and cleaned our house. We left home in a frantic hurry and by the time David was out of the hospital, the papers had been signed and the keys had been transferred to the new owners. I had Power of Attorney so David wasn’t even at the closing, he has far less closure than myself on leaving our home. I blinked and suddenly our home wasn’t our home anymore. I’m currently floating somewhere between denial and suppressed acknowledgement that we are never going back to that house. The vast majority of our stuff is in storage somewhere and we are almost always looking for missing shoes and hair gel. Side note, I did just find all of my shellac and gel polish, which I thought was lost and gone forever so occasionally there are happy surprises!! 🙂

    Then comes grad school. I can’t even begin to describe the changes that alone has set into motion. So yes, change. Lots of it.

    If you know us at all, you know exactly what we do when life gets a little too hard. We do this…

     We headed south towards a little town in Colorado called South Fork. We drove through it in 2014 as we were coming home from Arizona and we were both intrigued by how quaint it was. We made some seriously last minute reservations at a little B&B on the river and headed down for a long weekend of reconnecting, reflecting and relaxing. It was exactly what we needed.

    South Fork is about an hour from the Great Sand Dunes National Park (did you know Colorado has sand dunes?! They are so random but so so so very cool!) so we headed over to the Dunes to check things out. The wind was whipping at about 30mph and it was freezing cold but we both really enjoyed being here. Since it was so cold and cloudy, there weren’t many people around and we more or less had the place to ourselves. Aside from the occasional sand grain blowing into our eyes, we had a great time soaking in all the natural beauty that this place offers.

    Gooooosh I love this husband of mine! I will never stop being thankful for him and that he is alive!!!

     I got an absurd amount of sand in my hiking boots haha!

     I made a poor decision and attempted to do a long exposure of the water that flows in front of the Dunes. It was so cold and my exposures took so long that I was sure frostbite had gotten the best of my fingers by the time I got back to the car. The pictures turned out terribly too, oh well, live and learn!

     The next day we headed home and made a few quick stops along the way. One stop was in a tiny little town to say hi to my dad. He lives on 100 acres in the boonies and I rarely have a chance to see him due to problematic circumstances (ahem, my crazy step-mom). We ate lunch with him at the only restaurant open in his little town on a Monday, which was in the bowling alley. Ha! David hadn’t seen my dad in over 2 years so it was good for them to catch up a little bit. I don’t see my dad much and I have learned over time to lower my bar of expectations so that a simple lunch in a bowling alley where all we do is talk about the weather is enough to satisfy my heart.

    Lunch with my dad was conveniently located within an hour of the very first town David and I lived in when we got married, Canon City. David got his first job out of college in Canon City. He was a reporter for the local newspaper and covered everything from city council meetings to local high school football games. He lived there for about 18 months and I would go down to visit on the weekends when I didn’t have to work. I lived in Canon City for exactly 2 weeks after we got married before David took a job in a different town, where we live now.

    Canon City is a quiet, small town that is full of a mixture of retirees who love the milder climate, blue collar workers, tourists and a smattering of folks who moved there for a job in the prison system.

    There are 13 major prisons in the area, including “Supermax” which is a maximum security prison that houses criminals who are too-high a security risk or too much of a threat to national security for standard maximum security prisons. The high value of targets inside the prison makes it just as likely for someone wanting to break-in as break-out so they have set up the prison in an intentionally disorienting way that includes underground areas, no windows, “black holes” and sound-proof cells. Most people inside can’t tell where they are within the prison or even which way is north. Supermax holds famous criminals like:

    • Ted Kaczynski aka The Unabomber 
    • the Underwear bomber 
    • the Shoe bomber
    • one of the Oklahoma City bombers
    • one of the 9/11 bombers
    • the 1993 World Trade Center bomber
    • the Atlanta Olympics bomber
    •  Boston Marathon bomber
    • several mobsters
    • many cartel leaders
    • a few FBI/CIA double agents 
    • quite a few al-queida members 

    It’s a little unsettling that all of these guys are housed under one roof together (think of the destruction they could plot!) but every prisoner is kept under solitary confinement at Supermax for 23 hours/day. Any time a prisoner is released from his cell, he has no less than 3 armed officers with him at all times. Not much plotting could happen under those conditions, right?! Ok, I’m done with prison trivia 🙂

    We drove by our very first place where we lived for exactly 12 days before moving. The window on the right was ours! Our shower didn’t drain and we had landlords that would walk in unannounced at all hours of the day, but it was a significant upgrade from where David lived before.

     This was David’s first place in Canon City. His was the door on the left. It was right on Hwy 50 and he had a constant stream of semi-trucks whizzing by. His neighbor was about 98 years old and we were always worried about him dying. The worst was his other neighbor to the west…a taxidermist ::shudders:: The dumpster out back is a thing I fear to this very day.

    I have fond memories of our brief time in Canon City. Good memories of eating Little Ceasar’s pizza on that front porch, watching the trucks whir by and looking up at the stars. We would eat lunch at our favorite coffee shop and take walks along the Arkansas River. We went to the Blossom Festival and the rodeo in the summers and spent a lot of time people watching downtown and we even found a cute little church to attend. David and I spent the entirety of our engagement apart and these visits to Canon City were the highlights of each month that went by.

    I am thankful we no longer live there, but I can’t help but feel a strong sentimental attachment to this interesting little town. In many ways, it was a great foundational place for our marriage to begin. Our marriage started in very very humble beginnings, something I would never change. It doesn’t get more humble than living next to a taxidermist haha! 🙂

    We slowly made our way north and returned to the new life we have now. We are currently set up in David’s parent’s basement. Slowly, a new routine is being established and we are finding our bearings once again. House hunting has begun, David is back at work, I’m going to school and have finally responded to the 800 business emails I got while we were in the hospital. David’s parents have graciously been feeding us and caring us over the past 3 weeks. I have yet to go to the grocery store or make dinner but I have done a few loads of laundry so I will call that progress. 
    It’s funny how in the midst of all this change, a little road trip to some big piles of sand in the middle of nowhere actually helped us feel a bit more stabilized and secure. I guess that goes to show how much being in the mountains and traveling centers us. God’s creation has always been a tool for healing in our life. Now I also see it is a tool for grounding, stabilization and turning an upside-down life back to right-side up. 

    Upheaval

    Honestly, I thought my next post would be about how grad school is going or how the move out of our house went. I never imagined that I would be writing about what it’s like to operate in crisis mode 24/7 or what it’s like to watch your husband not be able to breath or how many times I prayed that God would spare David’s life.

    Believe me, I wish I was being dramatic. We have had a scary ride these last 10 days or so. Probably the scariest in my life. I haven’t really even begun to process what has transpired. Too much has happened. Too many tears. Too many nights without sleep. Too much disruption.

    It has been a total upheaval.

    Writing is usually my first step to processing something the Lord is doing in my life and so this blog post is more for my own heart to begin to make sense of things than for your reading enjoyment. No offense 😉 The days have blurred together and I know that if I don’t get something down, it will be harder and harder for me to remember or be able to piece together.

    I mentioned in my last post that the buyers of our home had moved up our closing date to February 1st. It was a tight timeline but we knew we could get our house fully packed and moved by then. I had rented a POD to store our furniture and we were steadily chipping away and packing boxes. I left David in charge of the heavy stuff so he spent last Saturday lifting and carrying heavy boxes. Towards the end of the day he mentioned that the side of his ribcage was hurting. We chalked it up to a pulled muscle and continued with our progress.

    On Sunday the pain was making him wince every now and then. When he stood up or sat down, he’d close his eyes and say “man! this really hurts.” Again, we chalked it up to a pulled muscle. A few times he was doubled over in pain and I suggested going to an UrgentCare. “They’re just going to give me some Advil and tell me to take it easy” David said. Monday was no better, though he did finally see an in-house doctor at his work who confirmed that it was likely a pulled muscle. She literally gave him Advil and told him to just take it easy.

    Tuesday I woke up to David struggling to breathe. He couldn’t talk or move. His eyes were shut tight and he had tears running down his cheeks. I did my best to put some clothes on him and rushed him to the ER which we thankfully lived 3 minutes away from.

    At first, the ER doctors thought it was some minor complication from a cold he had the week before. They seemed genuinely unconcerned. They ordered an EKG and a chest x-ray which came back clear. But when a triple dose of Morphine didn’t take away David’s pain, I saw a change in the ER physician’s demeanor. He looked at the lab results and noticed a test for blood coagulation came back abnormal. He ordered a CT scan and they immediately took David out of the room.

    When the doctor came back, it looked like he wanted to cry and apologize at the same time for not taking us seriously from the start. “You guys, I am so glad that you came in. David has two large blood clots in an artery of each of his lungs. If you had waited to come in, or tried to push through the pain any longer….. this would have ended very….. very badly.” In 25% of people who have pulmonary embolisms (blood clots in the lung), sudden death is the very first symptom. Ultimately, it kills 1 out of every 3 patients who have it.

    He was immediately admitted to the cardiac unit and given all sorts of shots and pills and drips of IV medicine. The first 2 days were pretty bad. His pain was out of control and he really struggled to breathe if he moved even the slightest bit. Morphine + hydrocodone truly did nothing for his pain. It was so hard watching him be in such sustained pain. David is a tough guy, he’s had all sorts of broken bones and injuries- in 13 years, I have never seen him in such physical distress.

    We had some really beautiful sunsets out David’s windows. Every night was a treat to watch.

    It was only once they introduced a very strong anti-inflamitory pain medication called Toredal that things started to finally turn around. His chest pain lessened, his breathing was easier and his spirits lifted. Praise God!

    Interestingly though, after he started this medication, he mentioned having a touch of a headache (Note to Self: if you’re ever on opoid prescription pain killers and still have a touch of a headache, it’s likely more than just a headache). That was just before he threw up. Even more interesting, the doctors and nurses didn’t find any of this the least bit troubling and decided to discharge him after a 3 day stay.

    He came back to his parent’s house after being discharged. Within hours, the pain in his head grew worse.

    What happened after that was a blur of 2 ER visits, stabbing pain, worried doctors, relentless nausea and vomiting, MRIs, blood tests and CT scans. There were talks of bleeding in his brain due to blood thinners, talks of severe reactions to the blood thinners, talks of spinal taps and of stroke risk. For a while they thought perhaps the clots in his lungs had traveled to his brain. There were lots of tears, prayers, Morphine, Dilaudid and Zofran. And then a readmittance into the hospital for a 2nd time.

    I didn’t sleep for a span of 48 hours. I couldn’t take my eyes off of David, watching each breath he breathed and thanking God for allowing him to be alive.

    He was admitted to the neurology floor where neurologists worked to figure out what in the heck was going on. While they tested out theories and prescribed various treatments over the next 2 days, David was in a state of utter torture. His pain was what the hospital staff referred to as “unmanageable” meaning, no medications helped. Even the strongest of the strong, Dilaudid (about 3x stronger than Morphine) would only touch his pain for a brief moment. His nausea was also unmanageable and the only way David got any relief was literally by being unconscious. One particular drug called Phenergan was very helpful for just knocking him out and giving him a little reprieve from the agony.

    During these days, I got a strong sense that this thing was bigger than ourselves or the doctors’ abilities to help. I stopped being able to pray intelligible prayers and simply began begging the Spirit to intercede on our behalf. I called upon the name of Jesus more times than I can count. We had a revolving door of support come through. David needed complete darkness and silence, so much of the intercessory prayer happened outside of his room but that didn’t make it any less powerful! I’ve only had a few times in my life where I could literally feel myself being carried by the prayers of others, this was one of those times.

    After 2 and a half very long days, eventually the neurologists gave us explanation for what David was experiencing. He had a condition called status migrainosus which is characterized by 72+ hours of relentless and unmanageable pain, vomiting and nausea. They confirmed he had no blood clots in his brain and no bleeding in his brain. This condition put him at a heightened risk for stroke and began evaluating him several times each day for stroke signs. But ultimately, they believed there were no abnormalities in his brain and that he would be ok.  I truly believe God spared him from a multitude of worse-case scenarios.

    They finally put him on a steroid protocol with a mix of IV medications which aimed at breaking his pain. After about 14 hours, he slowly moved into a more coherent state of mind as the pain began to dissipate. The next morning, he ate a few bites of food. He smiled. He kept his eyes open. He spoke in full sentences. He began to slowly turn the corner. The steroids helped him so much and really brought him back to reality again…a reality with much less pain, confusion and torment.

    Terrified to be discharged prematurely again, David and I decided it would be best for him to see how he did without any pain or nausea meds in his system before we agreed to be discharged. We stayed long past when we needed to, just to make sure. He had so many ups and downs over the week, we didn’t want to go home only to have him relapse yet again. But after 12 hours of reduced pain and no nausea, he seemed to still be doing well so we cautiously went home.

    He has since been on the mend and recovering well. The blood clots are still there. They will probably stay in his lungs for the next few months, but the doctors feel confident that they will not get bigger and they should dissipate with time while he is on blood thinners. We still have some testing to do in the months to come to see if the blood clots are due to a coagulation disorder.

    He seems to have recovered fully from the pain and nausea, which is a big blessing. His body is handling the blood thinners well and aside from not being able to mountain bike, shave with a razor or really do anything that could cause bleeding, the blood thinners don’t seem to be too much of a problem.

    Somewhere in all of this, we moved out of our house and into my in-law’s home. We sold our home. And I started grad school. But those are different posts for a different day.

    For now, I will simply thank God for His favor and protection over my sweet husband. And I will continue to smile and stare at him as I watch him breathe 🙂

    S l o w e r

    We’ll also call this post my 6 month post-op report. Hard to believe it’s been 6 months since I had surgery to repair a tiny broken bone, deep in my skull, underneath my brain. Some days it feels like forever ago and some days (like today) it feels like it just happened. Being here, at 6 months post-op has brought with it joys and challenges.

    I met with my local neurotologist in Denver who was blown away by all my progress. Based on my hearing and balance tests and the normal results from my latest spinal tap, he officially said I didn’t need to keep seeing him (unless of course, I experience seizures, double vision or migraines..all things to watch out for due to the cysts on my brain). Hallelujiah! So as of Sept. 1st, I am DONE with surgery, neurologists, testing, bills, appointments, spinal taps, follow-ups and pretty much everything medically related to SCDS. YAAAAAY! 🙂 What a massive relief to have all of that stuff over and done with. It’s been a l o o o o  o n g 15 months full of medical stuff and I can finally see the light at the end of the tunnel, praise God!

    Along with that news, comes the fact that I just feel better. I know I say this with each month that has gone by, but I just feel so much better. I’ve made tons of progress in 6 months and I’m so grateful that my progress has been steady and uneventful for the most part. I’m still a part of a SCDS support group and there are many people who had surgery around the same time as me, who are deaf in one ear, developed infections, developed spinal fluid leaks, still struggle with vertigo and some who feel worse now than before surgery. Yikes. It makes me grateful for my healing journey. What I went through is not a easy thing, not something you can bounce back from every time. So I am very grateful!

    I think that since I got that clean bill of health and I also started to really feel better around the same time, I sort of took off at 90mph. I went hiking, did a 4000 mile road trip, photographed a gazillion elopements, went to Aspen for a week, dinner with friends, had many late nights editing 25,000 photos (not an exaggeration!), trips to the mountains, more photo shoots, I started 3 Bible studies, started class at Seminary, grocery store trips, dry cleaning, trips to Denver, errands galore!!

    And suddenly, I didn’t feel so great anymore.

    The past 2 weeks I have just felt really “off.” I’ve had a few dizzy spells, I’ve been exhausted, I’ve had some ear and incision pain, headaches, restless night’s sleep.  I’ve had several moments of confusion where I can’t understand something that David is explaining to me (scary). I feel like I took a solid 20 steps backwards. I was pretty baffled by it for a while. Like, why are some of my symptoms returning? Why do I not feel well? What. The. Heck.

    And then I realized…oh yeah, I’m still recovering from surgery. It’s a 12 month recovery period. Not a 6 month recovery period. I am not done healing. And healing requires rest. It requires a slower pace of life. It requires walking (honestly, I had not gone on one single physical therapy walk in 7 weeks…no wonder I was getting dizzy!!). It requires little stress and low stimulation. And have I been doing ANY of that? Nope. So as of today, that changes. I have one photoshoot left and then my off-season begins and I can slow things down and be more intentional about giving myself the space to heal.

    I guess this is the downside of trying to run a business and heal from brain surgery. I had this fear that my business was going to fail this year since I wasn’t able to operate it “normally”. That if we weren’t out there crushing it every week, we would become obsolete. And so every inquiry I received, I allowed Andrea (my associate photographer) to book. After August when my doctor said “you’re good to go!”, I booked every single client who contacted me. Every single one.

    Ironically, this year, the year where I wanted to take things slowly so to allow myself time to heal, turned out to be my busiest year to date. We took on almost 50 wedding clients this summer between the 2 of us. Absurd. Unnecessary. Counterproductive. Fear-driven. I stopped trusting the Lord to provide for my business and keep things afloat. And instead I took things into my own hands at the expense of my health. And now I am paying for it.

    Thankfully, I have repented and realigned with what I feel God is telling me to do…”slow your roll, Beck” (and yes, I think God can speak to us in pop culture slang haha!). I have handed the reigns to this little business and my healing back over to the One who is really in charge of it all. I have committed to saying no more often, to declining invitations, to taking more walks and being more intentional with rest. I find it so interesting, that as someone who is a big advocate for living slower, simpler lives, obeying the Sabbath and creating margin in our lives…I happened to be doing the exact opposite, during a time when rest was of utmost importance. It’s humbling, embarrassing, sobering. But I’m thankful for God’s correction and grace as I get back on to a slower, more intentional path towards complete healing.

    {source}


    *Random side note that I don’t want to forget to mention, but also doesn’t really have a good place to fit into this post to I am just sticking it here….I have another broken bone in my head. I know. What the heck.

    When I went to see that local neurotologist in Denver, I said “ya know, I still can hear my heartbeat in my ear sometimes…why do you think that is?” He spent about 30 minutes looking through my CT imaging until he landed on a suspicious black area. “There should be a solid piece of bone here, but you don’t have it” he said. Basically, another area on my right side, called the Sigmoid Sinus plate has worn away. There is a vein that runs right next to the area, thus exposing my auditory canals to the sounds of blood flowing through the vein. Thankfully, the only symptom of this is pulsatile tinnitus (hearing your heartbeat). It will not impact anything else like balance, so I am free to just live with it and leave it alone if I want to. I can also choose to fix it, which would require a similar, but less invasive skull-based bone grafting surgery. But honestly, I don’t want to do anything that would potentially impact my SCDS repair, so I am choosing to leave it alone. Now, ask me in 10 years if I want to keep living with it and my answer may be different. But for now, we’ll let it be.

    I just think it’s really interesting that the very first symptom of SCDS I ever had was pulsatile tinnitus. Surgery did help with its intensity, but to know that it is due to an entirely different dehiscent bone is just really interesting to me. Frustrating. But interesting.

    Suffering

    As I lay on the table, feeling every inch of the long needle go through my flesh and move closer to my spine, I quietly cried out to God, “where are you? why is this so painful? I prayed that things would go well…so why aren’t they? why have you left me here in pain? where are you? this is too much for me to bear.”

    To say my spinal tap went poorly yesterday would be a massive understatement. It’s a long story why I even had to do it in the first place…something about my neurologist being concerned about elevated spinal fluid pressure. That’s not important. What’s important is that I didn’t respond to anesthetic, leaving me wide open to feel the excruciating pain of not one, but two botched spinal tap attempts. Hands down, one of the worst and most traumatic events of my life. I have no words to describe the pain.

    After the surgical draping was removed, iodine washed off and medical staff had left the room, I laid there on that table utterly inconsolable. The tears simply refused to stop. David prayed over me, read verses with me, uttered soothing words to me…but my pain, sadness, anger, disappointment, despair and discouragement would not be assuaged. After all this time. After all I have been through….

    I was mad at God. Mad that He left me high and dry. I sought Him for help, comfort and peace. All I got was a hole in my back, horrible pain and the added anxiety of knowing I have to go through this all over again in the near future. I’ve never been so mad at God before. Not when I found out I had to have brain surgery. Not when we lost our only child. Not when David lost his job. Not when I was enduring endometrial biopsies, blood draws, hormone injections and surgeries. Words can’t begin to describe the waves of pain, doubt and anger that washed over me.

    This was the final straw. Rock bottom.

    Maybe it seems dramatic that a spinal tap could rattle me so much, but it did. I’m not a dramatic person. Truly. But I discovered a new low, a level of discouragement I have not known before. I can only liken it to Paul saying he “despaired even of life.” After all I’ve been through…was it too much to request that I make it through a simple spinal tap without complications or blinding pain? It went back to my constant struggle with Him…why is He able, but not willing? 

    God didn’t let me sit at rock bottom for very long. 5 hours, maybe before I read some powerful encouragement last lifted me off the ground last night. And this morning brought with it new perspective, fresh advice from a dear friend and healing through God’s holy Word.

    I’ve thought a lot about suffering over the past year. Why some people suffer tragedy after tragedy, while others seem to skate through life without a worry in the world. Why God answers some prayers but not others. Why He heals one person but not the next. What the purpose of hardship is. What God does with suffering and our character. Why my suffering is drastically different than a Christian living in Syria. It’s all been rolling around in my mind like a dryer on Wrinkle-Shield. Every week or so, I’ll have new thoughts, new questions, new ponderings that tumble around about the role of suffering in life.

    I think the first step to figure out the purpose of and response to suffering is asking myself, “what is the goal in life for a follower of Christ?” Is it to have a happy little life? Days full of blessings, joy, puppies and rainbows, avoidance of all affliction? The answer here in the West is probably very different from the rest of the world. In America, we view pain and suffering as a stink bug that just landed on our shoulder. Quick! Shake it off, squash it! Don’t let it touch you!  I’m convinced the rest of the world doesn’t think this way about hardships and pain. Surely Jesus didn’t think this way.

    Assuming the answer to that question has something to do with living for the glory of God, allowing Him to use us and accomplish things through us to promote the Kingdom of God here on earth, we have to accept suffering will be a part of it. If it was true for Jesus, it will be true for us. One of my favorite authors, John Eldredge said “If God doesn’t use suffering to accomplish maturity, what exactly is He going to use instead? A lack of suffering turns us into little narcissists. We have to loosen our grip on the demand that life work our for us and embrace the fact that suffering allows us to know God in ways that others don’t.

    In the last 24 hours, for the first time in my life, I have felt like I can relate to Jesus in a way I never have before. Through suffering. From Gethsemane to Calvary, he suffered. He suffered physically, emotionally. He despaired so deeply, it was as if the life was being crushed out of him in the garden of Gethsemane (Mk 14:34). He asked for the cup to pass him by, to be spared. Yet he, the Son of God, was not spared. “God sometimes says no. Sometimes He calls us to suffer and die, even if we want to claim the contrary. Never did a man pray more earnestly than Christ prayed in Gethsemane.” (Surprised by Suffering, R.C. Sproul).

    Jesus had his answer. He knew what fate lay ahead of him and he stayed the course. He didn’t flee Jerusalem or stomp his feet in a tantrum about things not working out. He pushed through to the bitter end. And His suffering was ultimately redeemed for His (and our) glory. We are called to participate in Christ’s sufferings. Some of us may participate more than others, but we all experience it. We can’t escape it. I can’t escape it. So I might as well try to take hold of it the way Jesus did.

    My beautiful friend Stacy called me this morning and spoke words that I know were inspired by the Holy Spirit. She said “If God were a helicopter-parent, He could have swooped in yesterday and spared you that pain. But instead He chose to allow it, intended for a larger lesson that will last a lifetime.” I don’t quite have the full picture of that larger lesson, but I know her words were true. There is purpose in pain.

    I certainly don’t have all the answers, maybe I never will this side of Heaven. I haven’t landed firmly in a place of peace over all this yet, God and I are still wrestling over a few things. But I do know that God is good. That He intends suffering as a way for us to share in His glory, to participate in Christ’s suffering is to participate in His exaltation (2Tim 2:11-12). His comfort flows into our lives just as His sufferings do (2Cor 1:5). I’m trying to rest in this truth, I guess it’s the best place to start.

    Healing: 8 weeks

    Now that I’ve hit the 8 week mark(Woooo! HUGE milestone!), I’ll probably only do one post per month about my recovery. I would love to start focusing on other things in life besides healing from brain surgery-it’s easy for this process to just take over completely. I’m glad I did these posts though, it’s been a great way to keep track of my progress!

    The Good
    So much good! Physically, I’m feeling amazing. I have tons of strength and tons of energy. The dizziness has really been minimal and the exhaustion is gone. I’ve been walking so much, which I know is helping! I made it up to 4 miles this week, which is amaaaazing! Praise God for the ability to walk with no dizziness or problems. It’s like a dream come true! Minimal pain and pressure. No more issues with talking too much. I have so many moments where everything is my body and brain is peaceful…it’s like this whole SCDS thing never even happened. I’m so thankful for all the healing that has taken place, especially over the last 2 weeks. I’m just blown away by the awesome progress!

    From one of my many walks this week

    Also, we met with the neurologist this week to discuss the brain cysts that were found the day before my surgery in April. I felt like it went pretty well. Essentially, I have yet another area of my skull just above my left eye where the bone has started to thin and wear away, creating an abnormal pocket. That pocket is being filled with fluid and brain matter (blech). If it grows or if the bone continues to wear away, it’s a problem. If it stays the same and does not change, I’m in the clear. It puts me at higher risk for seizures, double vision and migraines…so if those things ever present themselves, I’ll likely need another surgery to fix it. What is up with my skull bones wearing away?! It’s like I have arthritis in my head or something. :/

    Thankfully, the doctor was not concerned with the pituitary cyst at all, no issues there. He also felt like perhaps I’m just a slow healer and that I should wait a few more months before being worrying about the fact that I can still hear my heartbeat. I’ve resolved to just put it out of my mind until October. If it’s still there, I’ll continue my investigating. So, overall it was a good visit. There are a few concerning things, but so long as I remain symptom-free from the cyst behind my eye, I’m good to go! Yay!

    **Edited to add: Not sure what this is about, but the neurologist called again today to say they may need me to come in for a spinal tap. It will depend on what some of the imaging I’ve had done says. So, I guess maybe I’m not totally done yet?

    The Bad
    Probably anyone recovering from major surgery get easily frustrated, impatient and doubtful if they’ll ever get back to “normal” again. I think it’s maybe extra hard with something like brain surgery because so much of the recovery is intangible and incredibly difficult to track or quantify. The swelling is gone, all of my shaved hair sits hidden underneath my normal long hair, there is no more physical evidence of brain surgery, aside from a scar on the side of my face and even that is well hidden! And as I stated above, physically I’m feeling great.

    But the way I look and feel physically doesn’t always match how I feel cognitively. And that is highly frustrating.

    Prime example: the other day I was making guacamole while listening to music and then David asked me a question. Game over. I couldn’t think clearly, I struggled to find words and started to feel panicky. The only thing that helped was sitting down and staring out the window. It took a solid 5 minutes for me to come back to reality. Gah! It’s just guacamole Becky!!! How hard is it to make guacamole while talking to your husband with music playing in the background?! Apparently, too hard. I know, I know. I need to give myself grace. I had brain surgery 2 months ago. It’s a minimum 6 month recovery. Grace. Grace. Grace.

    I just feel caught in that tension between feeling healed, but not completely healed. Like, I have the energy to go climb a mountain. And I think I could climb a mountain if I wanted to. But I know that I would pay dearly for it…I’d probably get confused and lost on that mountain. Exhaustion would probably hit me on my way down and I’d have to take a nap on the trail. Then I’d probably have to enlist someone hold my hand and lead me down the rest of the way.

    I remember before surgery, people in my support group always warned about not overdoing it during recovery. “If you do too much, you’ll pay for it”. I never understood that, I always though “you’re recovering from brain surgery, how on earth could you overdo it?!” But I get it now. Your body tricks you into thinking you’re totally fine and it’s ok to start doing things normally again. But your brain can’t keep up with your body. And this is where patience continues to play a part in the healing process. Only time and God’s healing will help with this area of recovery.