An open letter to the fearful...

We have been home from Texas for about a month now. We are doing our best to continue the 4+ daily hours of therapies that we learned at NeuroSolutions 3-5x a week. Brian continues to improve and make gains. His wakefulness throughout the day is longer, he's getting physically stronger, his head control & tracking is excellent, he has new responses to commands, and stem cells will continue to regenerate for up to 6 months. Dr Crawford would like to have us back by end of year for round 2!

I had the great honor of sitting and podasting with Dr Brandon Crawford while we were there. You can watch and/or listen here:

WATCH: https://www.youtube.com/watch?v=rFF-3RYJXG0

LISTEN:  https://www.drbrandoncrawford.com/podcast/episodes/strength-in-silence-the-unspoken-journey-of-tbi-caregiving

I have zero regrets about getting Brian to Austin for the treatments. But I would like to talk about the hard stuff that really attempts (and sometimes succeeds) at weighing me down. It is important because I feel it is a learning opportunity for us all. So I am going to share the stuff that I don't usually share - one, because I need to release it, cathartically - and two, because I'm pissed that after 3+ years and doing my best to educate everyone on Brian's injury and recovery, there is still fear in people that provokes them to say hurtful things. I will preface that I too, have a lot of fears, when it comes to Brian's recovery. But I do not dwell on them. And for anyone that thinks it is okay to stir up fear while I carry the torch of hope, let me just plainly say, it is not okay. *takes a deep breath*

Before we left for Texas, believe it or not, here are some things that were said to me:

• "Oh, you're just going to a chiropractor? Isn't there someone he can see here?"
• "functional neurology run by chiropractors is not legitimate science. Chiropractors aren’t trained in neuroscience or medicine. They are only trained in helping back and neck pain. I am afraid you’re being financially exploited by an experimental and not proven clinic full of unqualified people. I just don’t want you to be taken advantage of financially, and given false hope."
• [DISCLAIMER: the clinic is in fact, full of qualified, and LOVELY humans]
• "I need to tell you that these clinics promise big results but then you only see nominal changes, if any. Brian may only experience mild joint pain relief from their treatments. I feel it's my responsibility to inform you and not give your hopes up."
• "Oh I had a friend who suffered a TBI it's so sad. She never got better. I am so sorry"

Let me be clear. I sobbed and had full panic attacks after all of those conversations. Despite my research. Despite all the consultations and even talking to patients that have fought for their recoveries. Despite knowing what IS possible, naysayers inserting their unsolicited opinions still absolutely crush me. Have you ever ugly cried and gasped for breath? Ever done it in public or have had to excuse yourself from a room because your heart beat and tears are suffocating you? If you think I don't live on the cusp of these moments daily, you're wrong. I am tough, but fear is powerful. I typically surround myself with like minded individuals that are on the path forward with us. When someone takes me off guard that is not on our path to recovery, it can really throw me off. This can take hours, if not days, for me to rebound from.

I miss Brian. With every second that passes and every fiber of my being. I see him fighting. I want to see him through. But the memory of our life before the crash haunts me. I miss his hugs, his laugh, his stories, and the warmth of him beside me. I miss his company in the car and his big reactions to delicious food at meals (even if the food sucked). I'm fighting for that life back...for my partner back.

It's been a week since the worst interaction I have had yet. It broke me. I let it.

I vented to our home health nurses, cried, cried again.

I let a few days go by, and the anger sat on my shoulders. I could not shake it. I didn't tell anyone. I usually vent uncontrollably until I feel better. But this one crippled me. It has led me here, to share with ALL of our followers. I'm not sure why. Maybe my friend that suggested I write more convinced me. Maybe the significance of this pain requires a healthy release. Maybe if I share, people will think twice. Maybe one doctor will read this and change their tune. Maybe the very doctor that we had this experience with will read this and consider their actions in the future. Maybe...

I'm procrastinating because my fingers are even resisting reliving it. I'll do my best to summarize.

Last week Brian's g-tube sprung a leak and we needed to replace it quickly. The doctor that placed it the day of the crash had availability the next day, so we booked the appointment. I didn't think twice. It's a 10min procedure, followed by an X-ray. The alternative is going and having it done in the ER and running the risk of being their all day and also exposure to other sicknesses. So I took the appointment.

We were in good spirits (me and our home staff). We got him there, checked in and prepped. Doctor came with the tube, placed it and we should have been off to x-ray.

Instead, after the tube was placed, the doc asked if he could speak with me privately.

He walked me down to an empty exam room and invited his nurse to join us. Asked her if she remembered me from that grim day back in Feb 2021. We cordially greeted one another before he asked me to take a seat.

He went on to remind me how long it's been.

"Wow, it's been three years already....so how are you?"

Oh! He's checking on me. How nice! "We are doing good!"

"I saw you just got back from Texas...the red light stuff. But how are you? Sometimes once the reality of the situation finally hits someone its tough for them to rebound from and I want to make sure you're doing ok."

My internal thoughts: Ok...so he's downplaying the Texas trip...he knows about it though. Is ignoring my enthusiasm and my response that we are doing good...his tone is off...say something...say anything. Tell him how proud of yourself you are for staying healthy and navigating this as best as you can. Lauren, TALK! *cheeks get hot*

Doctor: "Do you remember the conversation we had back then, after the crash?"

Me (internally: panic. is this for real? I thought we were only here for a g-tube): "Yes. I have actually spent 3 years trying to forget."

Doctor: "I understand, but are you still wanting to be aggressive? Are you sure Brian would want to live like this?"

Me: "umm....."

Mustering up my courage made the silence feel like 5minutes. I'm sure it was seconds. With my heart beat pounding in my chest and his now visibly uncomfortable nurse staring at the floor, I managed (for the first time) to stand up for myself and my decisions as Brian's advocate & wife:

Me: "Brian has come a long way and I have no reason at this point to believe he will stop making progress."

Doctor: "Okay...okay. Well if you change your mind, let us know and we can walk you through what that looks like. Are you ok?"

Me: "Well I was before all of this."

Doctor: "Do you have any questions"

Me: "Can we go to X-Ray now?"

My memory is somewhat fuzzy but this was more or less the conversation. He questioned Brian's want to live "like this" several times and basically insinuated that I should consider withdrawing care. 

Let me remind you we were there for a g-tube exchange. 

I was still on my post Texas high. 

We were having a lovely Tuesday morning, all things considered.

How dare he bring me back to 2/15/21? And remind me that HE was the one that instilled deep fears in me. That HE was the one that had said things that give me PTSD. That he and his team are the ones that destroyed my hope from day one. I had to do a LOT of work on my mental health to get to where I am today as a caregiver. As soon as he was gone, I excused myself to ugly cry in the bathroom. The same stall and four walls that I met and sobbed with on the day of the crash. How poetic.

What gets me the most is that he obviously keeps track of our story. Which would mean he knows I am fighting endlessly for Brian's recovery (which by the way, if you are reading doc, IS possible). Did you see this breaking news a few months ago? 5 years.

https://abcnews.go.com/GMA/Wellness/moms-love-helps-woman-wake-from-coma/story?id=106610493

You isolated me in a room, away from my home health team, and cornered me with your questions. You interrogated me to see if I was actually doing okay. You implied your differing opinion and disguised it with concern. You suggested there's an 'easier' path to go down, that effectively would mean euthanizing my husband...as if he's hit that juncture when he in fact, has not. You dismissed all the progress he HAS made and made me feel like a fool. You momentarily stole my hope and my joy. You later apologized for upsetting me, not for your actions. That is not okay and not an apology. None of that was your place. There was also a time in your life you needed to recover, and you had that opportunity, though I am certain at the time you probably "didn't want to live like that," right? I really thought that experience was going to lead you to apologize to me. I sat in that room expecting a much different conversation. You blindsided me. How dare you?

Thank you for the favor of squeezing us in last minute for the g-tube procedure. I'm not sure what your goal was for what happened thereafter. Did you think that your route has never dawned on me? Did you expect to remind me of my options and have me be like "ya know what, on second thought, YES, walk me through hospice plans." !!? Honestly what was your goal?

If it was to wreck my week, because now it's been a full week and I cannot shake this pain & rage, then congratulations. You did it. But you will not deter me from our path forward. And you will not have the privilege of treating Brian again. We will not work with a medical team that is not like minded to us. We will not work alongside the hands of people that cannot acknowledge what IS possible. We will not converse with people that make us feel small or foolish.

Brian is amazing. He continues to progress. He is strong. I will not allow anyone to take that from him. Only God will decide when his recovery story sees completion.

" FEAR HAS NO PLACE IN MY HEART "

Ephesians 6:10-20

Cody, back far left, was a patient at the clinic. And now he is in school to do functional neurology! It was an honor to meet and be encouraged by him!