On Songs & Seasons

For all of my adult life, seasons have been marked in current time & in memories with songs. Some people remember the foods they ate, the people they were with, but I always remember the songs I was listening to. The ones I blasted in the car on rough days when I felt like I had nothing left to cling to and the ones I blasted just as loud when I needed to be pumped up for a good day. I can hear a song randomly on the radio, or in the store, and I’ll have an instant flashback to a specific street I was driving on & the struggles I was facing at the time. This will come as no surprise to those who know I have song lyrics tattooed on my body, of the one song that carried me through MULTIPLE seasons and continues to do so.

So I guess it’s not surprising that halfway through 2020 & with another birthday having just passed, it’s become clear what that song is for me, right now. And I’ve decided to share my thoughts on it, since so many of us, maybe for the first time, are living this same season together.

For the last year of my life (almost literally, 358 days and counting) I’ve battled my worst uphill medical battle so far - a spontaneous CSF leak (though it wasn’t diagnosed until 4 months later). July 15,2019 is distinctly marked in my head as the last day I was truly pain free. I never in a million years thought I would pray to *only* have all of my OTHER medical problems, but that’s been the prayer for a year now. Please, God, just make this stop. Give me an answer. A cure. A miracle. Even ONE completely pain free day. Please. Anything.

Then: 2020 started. Fresh start? Nah, more like fires. COVID-19. Murder hornets. New words like “Social distancing” and “Quarantine”. In addition to all the implications this had on all of us, I also had to find a new way to navigate the ever-changing healthcare system and put many appointments and procedures on hold. Indefinitely. 

On more occasion than one, I’ve felt like I’m in over my head. I’ve felt like I’m facing the ocean head on, trying to dodge incoming waves and learn a new normal, learn a different way to swim, only to find myself struggling to keep my head above the water at the end of each day.

If 2020 has made one thing abundantly clear to me, it’s that the struggles are not going to end anytime soon. The waters are not going to stop rising. The tide is not going to stop threatening to overtake me. The waves are not going to stop smacking me in the face and tossing me around, leaving me breathless and bruised. I want to believe that I could wake up tomorrow miraculously healed, with no need for further medical intervention, and while it may be possible, it’s certainly not a realistic plan. I want to believe that covid will be gone soon and that hugging my friends freely will be a reality again - but it’s not looking so good.

I don’t know yet if this song will be the one I remember 5 years from now when I think of 2020. I don’t know if I’ll find a new significant song next month or if this one will be stuck on repeat for years. Either way, I’m thankful for it today.

As the song goes:

“I’m reaching out,

I’ll chase you down,

I dare you to believe how much I love you now!

Don’t be afraid,

I am your strength,

We’ll be walking on the water

Dancing on the waves”

So maybe, in this season, instead of praying for no more waves, praying for the end of suffering for me & for so many others, maybe it’s time to pray that I can start learning to dance on those waves - the same ones that have threatened to overtake me & drown me. Less drowning, more dancing. Let the dance lessons begin.

2020 - the year of (un)happy birthday parties

True story: I’ve had a secret Pinterest board going for a few years, dreaming of and planning for the most epic & instagram worthy golden birthday party you imagine. If it’s cheesy and over the top and SPARKLY, it’s probably on the board. Then, at the beginning of 2020 I realized my birthday would FINALLY fall over a weekend and I.was.STOKED!!!!!!!

(Yes, I know I’m extra. Guac is extra too and everyone still loves it so...anyways, moving on!)

Before you completely judge me, you should know that I’ve  had a weird obsession with golden birthdays for as long as I can remember. It all started when my elementary school bestie got to celebrate hers early on in life. I remember thinking it was SO COOL. But then I did the math and calculated that I wouldn’t celebrate my golden until I was 27 - in the year 2020. I remember that it sounded unfathombly far away and that, as such a young child, 2020 sounded like a fictional year in a different dimension.

And well, 2020 is here. 27 is here. And to be honest? It kind of feels like a fictional year in a different dimension... 

Technically our stay at home order has long expired, but with our county & state being the #1 covid hotspot & cases rising each day, it became clear that a birthday celebration of any kind at all was not going to be feasible, much less ethical in any way. Small sacrifice for what I hope will be a worthwhile impact.

The truth is that 2020 has changed a whole lot of things. It has changed birthday parties, sure, but what weighs heaviest on my heart are things less obvious to the outside viewer. It’s been a year of such constant heartbreak, frustration, and unrest has made celebrating anything feel more weird and inappropriate than natural and normal.

I remember back in March that I said to my roommate “I feel so bad for everyone having birthdays right now. It must mentally be so hard to get in the mind frame of celebrating a “happy birthday” when so much is unknown, when so much is overwhelming, when so many are hurting…”

2020 has brought physical changes, with “social distancing” and quarantine, with “distance learning” and celebratory car parades. But beyond the physical implications, its’s had notable mental and emotional ones too.

I know that I, for one, will never again take for granted “simple” things like gathering of friends together to celebrate birthdays, like hugging friends without hesitation and fear, like going to church in a physical building with 100 other people, and like seeing my parents from less than a 6 foot distance.

So, I guess you could say the golden birthday celebration isn’t exactly going according to plan.

This whole past year of being 26 hasn’t gone quite how I planned either. Just 2 weeks after my 26th birthday, I woke up with a headache. I have a history of migraines so I figured I just needed to treat it, get some rest, and would probably (hopefully) feel better in a few days. But that’s far from what happened in the days, weeks, and months following that day which has forever changed my life. For those keeping track, two weeks from today will mark the very last day within memory that I did NOT have a headache.

It’s hard, emotionally, to look back on this last year and see the girl who felt so optimisti, so genuinely happy about a new year, a new age, and new opportunities. That girl who never saw this coming, and never knew how to prepare.

2 lumbar punctures, multiple full spine MRIs, 1 dynamic myelogram scan, 5 blood patches, 9 total fibrin glue patches, 3 hospital inpatient stays and 30+ lost pounds later, I think it’s fair to say this year wasn’t easy on me. I have had more outpatient appointments, blood draws, scans and painful procedures than I could ever even try to estimate. I’ve felt like a pin cushion, a lab rat, and a mysterious patient who just desperately wants to STOP stumping all of the specialists. I no longer desire to be a “very interesting case study”. I want out!!

Just the other day when I was planning out my weekend, I thought to myself “ooh, I know! I’ll deaccess my port Saturday morning. That way I can swim & shower & just be needle-free for a day, that will be a real birthday treat!”

Then a half-second later I had another thought that felt like the mental version of a double take. Like wait.... what did I just think about? What did I just say? Did I really just reference having a few hours without a needle embedded in my chest as “A TREAT”?!

So much of my life is now revolved around my illnesses & all that I do continuously to fight to feel halfway decent. And it’s all become so routine, mundane even. Most days I don’t mind at all. But in this brief thought train, somehow tangentially related to my upcoming birthday, I had a much bigger and deeper realization of... when and how did THIS become my life?

I’m trying hard to look forward to 27 with optimism and faith, but I’d be lying if I said that was easy. Celebrating a birthday feels hard right now, and that’s okay.

How does one look forward to a fresh start, a turning of a new leaf, when each previous year has only proven more difficult and painful than the one before it? How does one, in the context of a global pandemic, a history-making anti-racism movement, a country divided by hate and political allegiances and just overall REALLY HEAVY FEELINGS feel truly….. happy? Celebratory?

Then throw in some murder hornets and um yeah, no thanks. I’ll opt out of 2020, please and thank you.

The truth of the matter is that the weight of the world is unimaginably heavy, and I find it impossible to not shoulder some of the burden, to not carry the collective weight upon my shoulders. It’s just who I am and it’s what I do. But it can be exhausting. I am, by nature, a helper. A fixer. A do-er. A smiler. A “pretend everything is fine and everyone will never know you’re not happy”-er. But somehow, on this “happy birthday”, I find the word happy pretty low on the list of emotions running through my veins.

And before the haters come, yes, I fully acknowledge how privileged I am and how privileged of a “problem” this is. But I’ve always promised to share what’s authentically on my heart, which is what I’m doing here today.

I am beyond blessed. I’m blessed to look forward to a birthday next year, and hopefully a Pinterest board that gets dusted off after being pushed to the back burner. I’m blessed to have so many family & friends that I wish I could celebrate with. I am blessed to have memories of so many fun birthday celebrations over the last 26 years. I am blessed in the simple fact that I have never before spent a birthday feeling the ways I do today. I am blessed that I live in a world where I can share these thoughts and feelings and start the types of conversations I wish people were having more often. I am blessed that although I am furloughed, I am still employed and work with people who have become like true family. I am blessed that I am still COVID-free, which isn’t the case for many of rhe members of that family.

Whether or not I feel “happy” about this birthday doesn’t negate the wonderful and beautiful aspects of my life that still exist. 2020 has just made them harder to see, difficult to spot through the thick fog that is composed of the unrest of our country and the heaviness of our hearts.

But, ready or not, the day is here. I don’t have a choice in the matter. 27 has arrived. A new page. A new year to make memories that start with “remember that one time when….”.

Here we go, 27. Please, please be gentle. Please, for the love of God, be even a tiny bit ✨golden ✨.

Hello IR, my old friend

It’s a scene that has become all too familiar, yet somehow has not become any easier. I checked in at the covid screening tent, then made my way to registration (where they know me by name). After that, I waited in the medical imaging lobby (where the receptionist said “you’re back again?”). Then I was escorted here: to preop.

Soon I’ll change into the same ugly gown, wear the same grippy socks. The pre-op nurse (who greeted me by saying “we don’t mind having you as a patient, but we keep hoping you won’t have to come back...”) will access my port (needle #1 for the day). I’ll wait a few hours to meet with the doctor. I’ll consent to another invasive procedure, sign my name on the same dotted line. Yes, I acknowledge the risks. Yes, to all of it.

After that, I’ll be given a light sedative (not nearly enough if you want my honest opinion). The doctor will inject local anesthetic into my neck, needles 2,3, and likely 4. I’ll probably lose count. Then, I’ll have a series of CT scans. I’ll move in and out of the scanner again, while he studies the “suspicious” sites. Then, carefully, he’ll concoct a mixture of my own blood and fibrin glue, and inject into each of these areas. Directly into the nerve root. More needles, lots of them, but hopefully by the end of the day I won’t know or remember how many. Quite literally, we are attempting to glue humpty dumpty back together again. One section of the spine at a time.

And speaking of hope, somehow, yes, I’ve dared to dig down deep and find some. Let’s be honest, if I didn’t, I wouldn’t be here. I wouldn’t do this- again, for the 5th(?) time since November. Honestly, I’ve lost count. The recovery sucks. That’s all there is to it. 3ish days of strict flat bed rest. A long while of helplessness and relying on others - my personality weakness. And maybe that’s part of what God is teaching me in this season, the part of my heart that he’s maturing and growing, regardless of the fact I never asked to be grown in this way.

Deep down, a part of me has to hope that this will do the trick. That somehow, someway, this will be the day I’m healed. The beginning of returning to ME. The me who is happy, healthy, and enjoys eating donuts more than she should (I miss you, food). The last headache-free day that I can remember was July 15th of 2019 - and I really, really don’t want to make it to the one year mark.

I’ve found that somehow, hope and despair, optimism and realism are so infinitely intertwined that they’ve become hard to separate. And that’s okay. I’m both relieved and terrified to be here today. I’m both hopeful and leary. Somehow filled with both faith and anxiety.  To some, this may sound so contradictory that it doesn’t make sense. And frankly, I can hardly make sense of it myself. Other than to say that it’s necessary. I have to have enough hope in this to be willing to endure the recovery. At the same time, I can’t get my hopes up high knowing they could be crushed if this doesn’t work. 

So what do I do in the meantime? I’m not sure, other than literally one step at a time. One deep breath. Put on the gown. Sign the form. And just do it.

This morning, I’m praising God that after a million delays, I’m finally here today. Praising Him for a negative covid test. Thanking Him that through my pain, He’s already proven to use me to help other people, somehow mysteriously guiding them towards their own hope and faith even on days I can’t find any of my own to spare.

This morning, I’m praying for a smooth procedure and a recovery without complications. And perhaps most boldly, praying that this is the last time - pleading and believing for a miraculous healing.

& if not, He is still good. Yes & amen.

A Plea to Society - From "The Vulnerable"

I have to be honest.

For the first few weeks of the Coronavirus (COVID-19), I thought it was being blown out of proportion. I thought people were unjustifiably scared.

I am happy now to admit I was wrong.

They say that only the elderly and those with underlying health issues are at risk. Only “the vulnerable”, if you will. I think it’s supposed to be reassuring. But what if you ARE “the vulnerable”? Then what? I challenge you to look and think outside of the box. I promise you, you know more “vulnerable” people than you think you do. And it’s high time you act as if you care enough to want to protect them.

I continue to see many taking the social distancing precautions lightly, blatantly ignoring pleas from our government and our healthcare system. I see you refusing to give up your nights out with friends and your favorite weekend bar visits, your house parties. I see you. And I sympathize with you. But quite frankly, I’m fed up.

I get it, you don’t want to give up your life and all semblance of normal. You are scrambling to make sense of what life looks like right now, and you’re desperately searching for a sign that this will be over soon. The reason I know this? I’ve done this before. We all have. The “vulnerable”, I mean. We’ve cancelled social plans at the last minute more times than we could ever count. We’ve stopped eating our favorite foods because they make us sick. We’ve missed birthday parties, bridal showers, and nights out because we were too sick to make it there. Some of us have even stopped getting invited to such events because people just assume we won’t feel up to coming. We’ve missed work because of procedures and appointments. We’ve had huge financial strain because of loss of wages and insane medical bills. We’ve been there for so long, which means we really do know how hard this is for you right now.I see you, but I want you to see me too. I bet you hear “the vulnerable” and it sounds like a nameless, faceless, abstract group of people. But we are none of these. We are real people, with real stories worth telling, and real lives worth living. And these are our stories.

So picture this: in addition to giving up daily activities, social relationships, and fun outings, I’m also at risk of having to give up access to the medical care that keeps me functional; the medical care I’ve fought for years to have access to.
I am thanking my lucky stars that so far, my infusion appointments have not been cancelled. I can’t say the same for many of my friends around the country.

I have an upcoming IR procedure that I need to continue to seal my CSF leak. Every time the phone rings, I worry it’s them calling to cancel indefinitely. It seems almost inevitable at this point. My records sit on the desk of a world renowned surgeon in California who, for the time being, is not performing surgeries nor reviewing new cases. To perform even the most basic of necessary care for my central line safely, I need gloves, masks,alcohol wipes and other medical supplies that are now completely unavailable in many parts of our country. My life is on hold, my health is on hold, and my suffering drags on - with no known end in sight.

Let me be clear about one thing. I am in no way meaning to make myself a martyr. I am “lucky” in that my health will not become life threatening if I go without these procedures. But my friends? I can’t say the same. 78% of the sample I polled said they have ALREADY seen changes in their access to care. Of the rest - 95% said they anticipate changes in the very near future.

So far, they’ve been denied access to getting dressing changes for their central lines (needed to prevent sepsis). They’ve had their TPN deliveries suspended, meaning their bodies aren’t even getting basic nutrition or calories. Their infusion centers have completely shut their doors. Some home health companies are refusing to send supplies and nurses to their patients. Their primary care doctors and specialists are refusing to see them until AUGUST at the earliest. Other appointments that they’ve been waiting for since 2018 have been cancelled with no rescheduling in sight. This puts them at risk of losing their daily home medications, too. We are the vulnerable. And we matter. 

I hope I still have your attention by this point. I don’t need your pity or your apologies. I just need you to think of me and my friends every time you have a thought that social distancing is being over hyped, or that it isn’t worth it. It may not be worth it for you, the healthy millennial, but I sure as hell hope it’s worth it to protect ME and so many others. 

Trust me, I want this to be over as much as you do. That’s why I’m begging you. Listen now. Distance now. STAY HOME!!!!!!
Make the sacrifices NOW so that this can be over quickly. 

Because I promise you, if we don’t get ahead of it, it will get ahead of us. And I think we can both agree that we don’t want to see what that would look like.