As I was scrolling through Facebook yesterday, I was caught by a post someone had left on my husband’s cousin’s page.  It was the most beautifully crafted support of a friend.
In it, the author, Farzeen, discussed the injury my “cousin-in-law” had and how deeply it affected her life.
All I could hear as I read it was love, and a fierceness to overcome and make the world aware of this terrible affliction.  As there is no posisble way that I could explain Spinal CSF Leak as eloquently as Farzeen, I am copying and pasting some of her words here.
As someone with a disease that is very much misunderstood (Interstitial Cystitis – I do not have Spinal CSF Leak), I commiserate in the frustration that comes with others being confused by your pain or even trying to discredit it, or judge you for how you are handling it.
Plain and simple, we need to try to understand the pain of our brothers and sisters, but also accept that what they are going through is maybe something we can never fully empathize with because we will never feel the pain ourselves,  but just because we can’t feel what they feel, they still need our love, our support,  and our encouragement in a tangible way.
I hope at least a few of you will learn abut Spinal CSF Leak and have more compassion for those that endure it.  Take it away, Farzeen:

“Spinal CSF Leak is a very lonely and awful thing…

Losing CSF is like losing the most inmost layer of yourself:

it is a bodily fluid but it’s not like mucus that can be expended, and its not like sweat that should exit anywhere, and its not even like blood in that it can often clot itself when the vessel that is holding it breaks open (though of all the vital fluids, it is most similar to blood in that its loss is traumatic and its presence is essential for life).

Rather, CSF is meant to be kept very discretely in the confines of the central nervous system so that it continuously, from the moment you are born until the moment that you die, surrounds and bathes your brain.  It is honestly, like your essence.

Before our brains develop in our skulls as fetuses, we actually first develop the CSF, and the structure inside the brain which produces the CSF: it is that close to our essence, our origin. And it is never meant to be broken into, exhaled, inhaled, lost — it is a constant, unfelt cushion that unless you have suffered the unseemly trauma of it’s being lost or overproduced, you have never even detected its presence.  I was like this until the moment of my spinal CSF leak.

Losing CSF from your brain and central nervous system is like losing blood at a traumatic level, but its the water that keeps your brain from collapsing under its own weight.

CSF is the cushion that aims to mitigate brain injury in the event of a head trauma, like a concussion.  Without this cushion, every time your head and body moves — even from the slightest thing like crying or laughing or sneezing, let alone standing or walking or dancing or bending over or going for a run — is like giving you a concussion.

Every moment you live in this state you are sustaining internal injury to your brain.  The longer a person lives with a spinal CSF leak, the more their “neurological deficits” (i.e. areas of the brain that get injured and stop working properly) increase.

It is akin to the idea that the first concussion may be minor in its impact on the brain, but the risk of brain injury increases with every subsequent concussion.

To understand some of spinal CSF leak, think of it like that:  except that every moment is a new concussion, and every day leaking is like countless more subsequent concussions. And just as is the case w/ concussion, the more brain injury, the greater the risk for worse deficits — impaired coordination, impaired memory, impaired speech –and catastrophic brain events, subdural hematoma (brain bleed), stroke, coma, and yes, even death.  This is the case for prolonged spinal CSF leaking: prolonged state of CSF loss from the brain.

There is only 1 position, 1 single position, in which this state of vital fluid compromise can be **temporarily** mitigated.   That position is completely flat — supine — and the reason for this is that when you are flat, the cerebrospinal fluid that is in your nervous system is moreso pooled underneath your head, than when you are standing up.  This is where the “spinal” part comes in.  The “leak” (or hole, or tear, or rupture — however you want to call it) exists in the layer of connective tissue that otherwise holds the entire brain and spinal chord within it’s embrace: this layer is called the “dura” or “dura mater,” it is supposed to be a tough layer that cannot easily rupture, since the fluid it contains and the organ system it contains is so absolutely central and essential to life itself.

So, when Sarah stands up, because there is a leak in her dura somewhere along the length of her spine, her cerebrospinal fluid pours out through that hole, due to the force of gravity downward on the fluid, and the allowance of that hole to drain the fluid out, when it is not meant to be drained.  As such, she needs to lie flat to prevent gravity from doing this, so that her brain is as safe as possible.

As I write this description of what it means to lie flat when you are experiencing a CSF leak, I see images in my mind from movies or TV shows I have watched.

Like Grey’s or other dramatic shows where someone is going through a horribly physically traumatic thing, and the doctors are on the outside yelling at them “HANG TIGHT, DON’T MOVE, WE WILL GET YOU OUT OF THERE.”

That’s what this “lying flat” should be for spinal CSF leak.  It should be a “HANG TIGHT.  DON’T MOVE.  WE WILL GET YOU OUT OF THERE” all three of those sentences.  It shouldn’t be “HANG TIGHT.  DON’T MOVE.”  It needs to and must be followed with “WE WILL GET YOU OUT OF THERE.”

Our brains and bodies were not designed to have to sustain acute flight or fight states for days, weeks, months, years on end.

You are not meant to stay immobilized forever, only until Meredith Grey runs to the helicopter, grabs the supplies, makes a face at Chief Bailey while she attempts to move mountains to save her patient, all in like maybe 5-15 minutes tops, and then you are meant to MOVE, and then to HEAL, and then to RECOVER, and then to REJOICE — and these all take their time, but they are stages that signal getting better.

These last 4 bold words are what is stolen from so many people I know who have sustained spinal CSF leak:  all because it is newly recognized, and its severity is underestimated, and the appropriate understanding of what its consequences are (progressive deficits, stroke, coma, death) have not sunk in deeply into the medical mind’s consciousness, nor in the hospital infrastructures that stem from it… however cursorily, however rudimentarily.  Not even that much….

I know that as a patient with this condition, I personally found it very hard to tell people exactly how awful it was, and this was due to no lack of desiring to be loved and cared for in this state.  It was so traumatic, it shook my soul, and even describing what I have just written to you above (the way CSF is so sacred and the way its loss is so horrendous) I found to shake my soul.

I didn’t want to tell the story because honestly, I felt that we all deserved to never know what our CSF feels like, that unfelt cushion, and I didn’t want to alert anyone to what it’s like to physically sensate the inside of your own brain (the “head-ache” so inappropriately, insultingly, grievously, ignorantly called) due to the loss of the cushion which ordinarily makes it utterly undetectable…  That is how I responded to the trauma.  We all respond differently.

There isn’t a right way to respond to this kind of trauma: the only right thing is for medicine to be better at sealing peoples’ leaks, and for the people whose leaks we as an entire medical collective do not know how to seal (leaks and peoples’ duras vary greatly physiologically and even the known tools to seal leaks that the 4-5ish doctors in the country who know anything about this condition are not enough sometimes, because it is **very recently recognized** and research is still lagging), medicine must be humble and forward thinking seeking new solutions, because of the gravity of what it means to be in the dearth of one’s own cerebrospinal fluid. That’s the only right thing.  And we’re all part of medicine, because we are all part of this society together….

The reason I am writing this message is that I have a faith that when something is so horrendously unimaginable, it is more possible to bear when many come together to hold it.  In Sarah’s case, we need a host of medical doctors to embed themselves in the village.

But we also need each other, to raise this awareness together, that Sarah may not have to raise it alone.  And we need lots of people to help Sarah hang tight longer than she should, until we get this taken care of pronto.

It is something we all deserve.

We all deserve to live in a world where we can feel assured that if we were to endure a spinal CSF leak, we would get the right care.  Just like, we all take comfort in knowing that if there were to be a fire, we would call the fire department and someone would show up.  It’s something we all deserve, and it’s something our dear friend is fighting every single day.”