Diving heals the soul and helps me feel whole again, even if just for 40 minutes . . .

We just experienced two of the most spectacular cavern dives of our lives.  We always Dive with Alfredo Duarte from Luum Ha Diving for cavern/cenote dives because they are exceptionally good dive masters and instructors and their professionalism and knowledge about the cave systems in Mexico are top notch.  Here is the link to their Face book site: https://www.facebook.com/LuumHaDiver  

We have been diving with Alfredo from Luum Ha for 5 years and experienced many cenote dives but our trip to The Pit and The Pet Cemetery were by far some of the most challenging and most beautiful we have done. 

This is a map of the whole system here - we only dove the area called the pit - it is the small squarish part in the upper right of the map -so you can see how much we did not see.

The Pit is part of the Dos Ojos cave system. Exploration of Dos Ojos began in 1987 and still continues. The surveyed extent of the cave system is 82 kilometers (51 mi) and there are 28 known sinkhole entrances, which are locally called cenotes.  Dos Ojos is one of the top three longest underwater cave systems in the world. Dos Ojos contains the deepest known cave passage in Quintana Roo with 119.1 meters (391 ft) of depth located at "The Pit" discovered in 1996 by cave explorers who came all the way from the main entrance some 1,500 meters (4,900 ft) away.  In fact the Pit is where Carlos Coste set the free diving record of 150 mt (490ft) on one breath, back in November of 2010. 

We dove in The Pit. There is a long stairway down to a small wooden platform.  This stairway is relatively new – only a few short years ago you would free jump into the water and lover your gear by rope.  Jeff and I have great difficulty with stairs, and Alfredo and the Luum Ha team are excellent with helping us with our disabilities.  They like us believe diving can be done safely for people with some disabilities and without their assistance in loading our gear down to the water we would never be able to see the beautiful places.  We gear up in the water to take the weight off Jeff’s back and my abdomen.  This is a fairly common practice of divers with our disabilities.  The reason we love diving is that once in the water; we can feel like we have the same strength and agility we had before our injuries.  Diving allows us a feeling of physical freedom from pain, and a quieting of the mind we never have outside the water.  We are lucky to have dive master in Mexico, who understands that diving is healing for the soul and body and is willing to have his team assist us in getting into the water so we can experience these amazing places.

Once in the Pit, you descend to about 120ft – the water is fresh and clear as you are descending and around 95ft you start to see the Halocline, which is much wider here than in other caves.  The halocline is where the fresh water mixes with the salt water. Salt water is denser than fresh water so when gravity forces them to mix inside the cave the water stratifies; forming layers which creating very interesting visual effects.  Most cave systems this halocline is just a few feet of layers mixing, but because of the size and depth of The Pit, the halocline goes on for many more feet creating this incredible white cloud.  As you descend into and out of the cloud there are old braches of trees reaching out of the cloud.  And it looked as if we were ascending from Mordor as we came up.  Here is a short video of El Pit: http://www.youtube.com/watch?v=ggIb4R3QtOw We are editing our video and will post it soon, but here isa fun on to give you an idea in the mean time

The formations in the large room near the entrance to the pit 

The limestone formations in the Pit are breath taking. The death of the caves means they are huge.  During the Ice Age the ocean lowered by about 350ft and this whole cave system was above the water line for hundreds of years. During this dry period humans and animals used the caves for shelter and tress and plants took root.  So the caves are filled with fossils of human and animal skeletons.  They have found a female skeleton, in a fetal position as for burial, and dated her to 12,000 years old.  The Pit has a full skeleton of a giant sloth, which is at least 8000 years old and many other bones.  All of the formations of stalagmites and stalactites in the Pit are exceptional, some are hundreds of feet tall reaching all the way down the wall and then there are the shelves with thousands of tiny needle like formations tucked into the side of the cave.  The main shaft of the cave has several tunnels branching off into other chambers. We stayed inside the main area as it took almost an hour to just explore all the incredible formations along the wall as we were ascending back slowly to the surface.  It was a beautiful slow exploration of some of the coolest formations we have seen: there was a section where is looked as if some one had melted butter and maple syrup down the side in big globs for fifty sixty feet. 

After the Pit, the tram graciously carried all of our gear to the surface as we slowly hauled our bodies back up to the van.  We always joke that it takes days for us to recover from the toll it takes on our physical bodies but the joy it gives our souls is beyond measure.  Personally I never feel more ‘alive’ than when I am diving.  Back at the van the team loaded up the gear and we had a nice lunch break before heading to the next dive at the Pet Cemetery.  

The Ladder down into to big open chamber . . . there was no possible way Jeff or I could go there so the younger couple divng with us took my phone and grabbed pictures of the inside for us.  we stood at the top and heard all the "oooohhhhs and aaaaaaahhhhs" and we very jealous.

Meet Heath and Bobbi Allen - they were the second dive team on the trip and they were both great divers and very sweet to help us take pictures in the places where Jeff and I could not walk to on land.  

 This is the large chamber at the bottom of this ladder that looked like it went down forever.

The Pet Cemetery cenote is a shallow dive with max depth of about 25 ft but most of the dive is actually around 10ft.  even though this is a shallow dive in extremely clear fresh water, don’t let that fool you into thinking this is a easy dive.  The whole path is surrounded by very fragile formation, beautiful formations which make you feel like you are gliding through a crystal palace.  This is a difficult dive because the area is tight, the formations are all very close to you and you must have excellent buoyancy control not to tough the formations or the floor.  

The floor is covered in fine silt and one tap of fin or hard kick and you will fill the whole tunnel with a giant silt cloud.  So you streamline and frog kick very lightly and keep yourself from toughing anything.  This is one of the most challenging buoyancy dives we have ever made. Gliding along in and around those formations made me feel like I was flying. 

Here is a short video of the Pet Cemetery Dive: http://www.youtube.com/watch?v=rj9U1U_5JpY

We shot our own video and are working on editing it but I thought you might enjoy these videos in the mean time.

This is the small wooden platform at the entry of the Pet Cemetery, this is shallow and ha heavy silt - so the team packed our gear here for us and we very carefully dressed in the water. Dressing in the water allows me to suit up without causing a huge amount of pain to my abdominal muscles.  I wear a full 5m suit and an abdominal binder to try and lesson that pain during the dive but dressing in the water is a huge help and the only reason I can do dives like this. Diving is an adrenaline sport, but it can be done safely for people with all kinds of disabilities and the more dive masters understand the type of assistance the diver needs the more the can help more people experience the wonder of being under the water.  

The overhead environment is close all around you, you are swimming very close to fragile formations that are thousands and thousands of years old and the floor is a instant cloud of blinding silt.  You touch the floor and you fill the clear water with a silt cloud and if you hit the wall or ceiling you are damaging history. So you get your buoyancy right and start gliding along with great care. This is what I meant by a very challenging dive.

The Pet Cemetery gets it’s name from all of the skeletons found on the floor of the system, where animals wandered in to die thousands of years ago back before the water rose inside the cave.  You can clearly see one full skeleton and several pieces of a huge jawbone plus many other bones. It is a rather exciting history lesson to know the how and why of these amazingly beautiful structures we are now blessed to experience.  There is something quite humbling in those limestone structures, something almost awe inspiring when you realize the millions of years it took to form, the synchronicity of the ice age dropping ocean levels and allowing life to flourish inside the cave and then finally the slow rise of the ocean back to modern levels. All of that had to happen, in that order over that time to allow us to behold the beauty now.  To know that those caves have only been being explored by a very small number of people since the late 1980’s makes me feel very lucky indeed to have experienced them and hold them as part of my soul.

The formations are incredible - he is an example of how the stalagmites and stalactites grow together over time to form columns - now image those columns standing 100's of feet high in the deeper caves.

 All of the bones were in the cave before the water started to rise again so that means they are all at least 8000 years old.  those are some pretty good looking 8000 year old teeth, huh?

Large jaw bone with all the teeth still intact and a partial skeleton of a deer below.

There is now a beautiful new museum on the Dos Ojos site: The Institute of Pre- History of the Americas, that has great exhibits about the ice age and how the fossils came to be all through out the cave system. Here is their Facebook site: https://www.facebook.com/pages/Instituto-de-la-Prehistoria-de-América/155086507853455

If you go to Dos Ojos now – stop at the museum.  The museum building also serves as a meetinghouse for the local Mayan community – a gathering place where they can come together and work with the government researchers.  The cave system is on Mayan land and has been part of their history and culture from the beginning so it is wonderful to see the cooperation between the local people and the researchers.  These caves have only been explored since the late 1980’s and there is so much more yet to find.  The museum will soon house a onsite lab where researchers will be working on fossil finds and the public will be allowed to watch how fossils are brought up from the water and then preserved, tested and replicas are returned to their exact locations. This is a one of kind collaboration with the local Mayan population working to preserve the rich history of this land and the peple and animals who have been inhabiting it for thousands of years.

This is a reproduction of the site where the skeleton of the female's skeleton pictured above - the bones are arranged in a fetal position as if she had been wrapped for burial. the bones were placed before the water rose and that is why they stayed so close together, the skull had an air pocket inside and as the water rose it lifted and turned allow the air to escape and that is why is rolled off to the side slightly when it return to the silt after the water rose above the bones.  To date they have found the oldest fully intact skeleton in the new world - a woman they named Naia and then have found another young man dated about 10,000 years old here in the cave system.  This cave system is one of the third largest in the world and still not fully explored so it is exciting to imagine how many more finds there could be in the waters down there.

They did a reconstruction on the skeleton face and determined this is what she would have looked like. She was around 45 years of age but because of the difficulty of her life she would have appeared much older by our modern standards. these people all used their teeth as their main tools, so their skulls and jaw bones and teeth show a lot of wear and infection.

 Diving for both Jeff and I deeply important to us; not just because we are both disabled with medical conditions which can make life outside the water difficult, but because of how being under the water in the full glory of nature can heal our souls.  I spend a lot of time in and out of hospitals and on Picc lines having having blood transfusions and other medical treatments which make life not so much fun.  so When I am free from those treatment even just for a month or two we try and get underwater again. We run off to feel the ocean around us, see the incredible formations in the cenotes and be with all of the abundant like on the reefs.  Those few precious moments under the water refuel our souls, and even though it may take our bodies a while to recover every second we get under the big blue is worth every moment of recovery outside.  I know my diving days are limited as my condition progresses, but until then, I will fight like hell to keep getting back there.

This is why we are working to help other disabled veterans and civilians learn to dive. SCUBA, and being in the water allows us to feel whole again and move with the agility we had before our injuries or illnesses.  Sharing the gift of diving with other disabled veterans is a life long dream so they too can feel whole again in the big blue.

Today was a tough one, one of the worst in a while.  I know all to well that I could have it worse and that there are plenty of people out there who do.  But today was one that stretched the envelope on my own strength.  I woke up to find my PICC site bleeding heavily again.  It soaked through the dressing and leaked out of the waterproof seal and onto everything.  Seeing more blood scared the shit out of me: knowing the amount of medical crap that would follow.

This is how it started - feeling a trickle of warm blood coming out of the dressing and running down my arm into a pool on the pillow.

 And it did follow; first the on call nurse looked at it, and she refused to do anything but call an ambulance, which I refused to get into because it would route me to the nearest hospital which is not the care needed.

So we headed to a slightly further ER with better care and cued up for the fight to see if I would be admitted to the hospital.  By the time we got to the ER - I had the blood running out of the bandage and into 4 layers of gauze sponge. They have to X-ray the line - make sure it is not bleeding because you pulled it out or something, they confirm the line is working, then they clean up your crazy bloody mess, and give you a new sterile dressing.

Here I am waiting . . . . and waiting . . . .

 And waiting some more . . . Jeff fell asleep in the chair next to me - poor guy has been up all night helping me every time the IV pump alarm goes off from air in the line or an occlusion of the line.

And then they want to keep you for observation, make sure your line is working, that your gut is trying to work.  And they listen to your guts and it makes no sound, or just a high pitched whistling sound all of which cause them to all make that same worried, "I don't know what the fuck to do" face.  Then you discuss the pros and cons to being admitted.

1.  The cost I cannot afford, I would be getting exactly the same treatment, same meds and same IV and same nursing care - with less sleep for 5x the cost.

2. I would be exposed to germs that with my compromised immune system could kill me.

3. Did I mention the cost and the burden that cost places on my family?


Thank goodness I got them to listen to reason and I was released beck to home nursing care.  Back to my little room with my IV pump going beep beep beeeeeeeeeeeeeeep every 15 minutes. I came home and started that iv pump again and drifted off to sleep hoping beyond hope that I would wake in some other life.

Funny thing is that I had not stopped to look at the date until after I posted this.  It was a year and a day ago when I fell unconscious while on a PICC line and had to be resuscitated by my husband, who performed CPR until the ambulance came.  My life changed that day, it dropped to a whole other level of living with illness, and a year later I fear we have leveled up again towards the big boss battle that comes at the end of the game.

"Get over it" is never a good response . . . Or how a damaged GI tract makes even the most mundane of head colds an adventure.

I write here to help people understand how things are different for me and hopefully give some deeper perspective to what life is like in it’s costs for me and in turn possible for others.  This post comes from a off the cuff remark made to me to “buck up, cause it is just the flu, we all get it,” statement.  Which is true we all get the flu, but it affects all of us differently and if you understood what being sick with the flu does to me, you might think twice about telling me or anyone else to just “get over” their flu symptoms.

So everyone understands that having a serious bout of influenza will knock you out and if it progresses to pneumonia well then it will certainly put you in bed for a while. For me it is slightly more complicated. Of course I have all the normal accompanying symptoms of sinus pressure, mucus draining, difficulty breathing, low energy, aches, chills and coughing. But in my body the symptoms take on a new level of special fun.  If I have a bacterial infection and need antibiotics, oral medication have difficulty working cause my intestinal damage does not allow them to absorb. I rely on injections and IV infusions of antibiotics which can be done in the doctor’s office and at home with help form a nurse or worst case after hours in the ER.  If I don’t get to the injection soon enough, I have to go to intravenous infusion. If I have to have an IV then we have to make sure that I am not already too dehydrated to accept a regular IV site in my lower arm and most times have to move to a surgically implanted PICC line in the artery of my arm. the problem with being sick is that most times if you don't treat it, it just gets worse.  So the time it takes for me to get treatment usually means the initial illness has progressed to something worse like pneumonia.  I experience all of the normal pneumonia symptoms but some of my experience are uniquely my own:

Above is a Peripherally Inserted Central Catheter (PICC line) is a form of intravenous access that can be used for prolonged period of time to deliver fluids and medication.

Above: One of my PICC Lines.  I have to have Picc lines because I need to receive fluids and meds for weeks at a time, and a normal IV site will fail in about 2-3 days in my arm.  

Hydration or lack there of:

I live in a constant state of dehydration; my gastrointestinal system cannot pull enough water out of what I consume to keep my body hydrated adequately. This is why you see me with my metal sippy cup always in my hand. I have been told by my doctors to never stop sipping, and I always keep liquid in my cup I like cause I need to tug on it all day. I keep that sippy cup with me at all times, and I pack a cooler of ice and more liquids to refill it everywhere I go and I take a fair amount of grief for the practice. people constantly ask why the hell I pack a cooler to go to the store, or doctor or anywhere. I can't guzzle liquid, I don't have the space to accommodate large amounts of liquid all at once - so I have to sip and sip constantly.  Most people can down a bottle of water and then be drink free for a few hours, I cannot.  

I rarely consume alcohol, cause the meds I take are already hard enough on my liver. As a good southern girl, I always keep my glass full of ice, because I like things cold and ice melts and adds water to the drink.  I do drink soda, and my doctors and I go back and forth on this. Universally soda is not a great choice, but there are mitigating factors for me.   I do not absorb the full amount of caffeine, or sugar. We know this scientifically because my A1C (the blood test that gives an average of your glucose levels over a 90 day period) is always between 4 and 4.5.  My doctors and I have reached a compromise, as long as the A1C stays in that range I continue to drink soda, the day the test shows a higher A1C, I will quit.  The other part of this is my daily intake of “food: is usually 80% broth.  My body has difficulty with real food a lot so my usually intake consists primarily of broth.  So even without the Soda I get a lot of water in the broth form.  Yes, I know there are better choices to drink and I do take advantage of teas, juices, water and more, but I look at it this way. My daily dietary intake is usually so limited to really crappy bland liquids like chicken broth that my one constant enjoyable vice is soda. Trust me – go on a broth diet for a week, skip all food and only intake broth and other liquids and you will begin to understand why you may just have to pry that Dr. Pepper out of my cold dead hand.

That being said, I am always on the brink of dehydration even with the sippy cup graphed to my hand, I still can’t get enough liquid into my body.  When I get sick with a cold or flu I feel bad and try and rest, so my consumption of the ever-present sippy cup is lowered. Here is where the dehydration plays a fun trick on me, as I get more dehydrated my nausea levels increase and the less I want to put anything into my system.  When I have flu I have a solution for this, I freeze Gatorade mixed with protein drops in ice cube trays and then crush the “gatorice” – ice chips melt in my mouth and provide liquid without tripping the nausea switch.  But this does not make up for all the lost sipping opportunities, so if this goes on long enough I end up with an IV to give me hydration.  When my flu progresses to the pneumonia stage, 9 times out of 10 I will be placed on a PICC line and given fluids along with the needs meds for weeks.

Above - is me getting hydration and meds for a bowel obstruction -count the number of bags in this IV chandelier.

 I usually require at least two pumps with multiple bags of fluids and meds. It makes a strange sight, to me it always seems like a Dr. Seuss chandelier.

 An easy outpatient session: I am getting 650ml of iron here.  I have to do this every 3 - 4 months and I do multiple sessions of that amount of iron.  

 Notice how the Iron looks like motor oil as is flow into the body - kinda creepy huh.

 My usual excited face when I have to go for outpatient infusion.

Way better than my excited face when admitted to the hospital.

Coughing . . .  a cruel torture all on it's own:

We all hate coughing, that annoying reflex action meant to clear the gunky mucus from our airways.  I hate coughing in the same way I hate vomiting, because that reflex action of my abdominal muscles to force air up my trachea also forces sections of my intestines to push through the multiple fissures in my abdominal wall.  The act of coughing squishes my intestines through my the holes in the muscles of my abdomen and once they are stuck in those hole the reflex action of the next cough pulls, and rips on those same intestines.  As my poor intestines get stuffed and stuck in these holes they twist, and kink and start to swell.  All of this causes ungodly pain.  Anyone who has ever had a hernia will help explain that pain, cause it is unlike any other.  To me it feels like some one jabbing a molten spear into your side over and over.  On particularly rough bouts I have been known to black out from a cough, squish, cough, rip moment.  Most of the time I lose my breath and try to find a way to lie back enough to use my hands to help push the intestine back through and free it from the fissure.  I have had 5 hernia surgeries to try and fix this phenomenon, but once the muscles of your abdomen rip they cannot grow back together – so I am stuck with what I got. Currently, I got one really big hole, 12 x 14 that is covered by a slightly larger mesh – this is screwed into place and theoretically holds my muscles together and keeps the intestines on the inside. There are smaller fissures around the edges and a few other rips lower and on the side.  Meaning there are lots of places for bits of intestine to get squished and trapped into my abdominal wall. This is the bulk of abdominal pain that I feel daily. 

An example of how the bowel can be pinched by pushing through the abdominal wall - this is what happens when I cough.

The mesh and below the screws that hold the mesh by screwing into your muscles - when I rub my tummy I can feel the screws through the skin.

The main problem with having parts of your intestines squish into holes in your muscles is that when they are in the squished up position they stop being able to allow what is traveling inside them to pass along.  This is how the obstruction occur. 

Above is a radiograph of a bowel obstruction - on left side - below is how a normal bowel should look.  The obstruction shows how the dye is stopped on now side.  In the normal view - the dye runs the entire course of intestines through out the abdominal cavity. When I have fluoroscope tests dine there is always the moment when the radiologist calls in other radiologist to check out what is on the screen because my "normal" only has bowel on the right side, the rest was damaged and removed.  So I am always a spectacle to see during testing. 

When a bowel obstruction stops the flow of material down the GI tract and my whole body goes in to panic mode. First every bit of water in my body’s cells are pumped into my GI tract to try and flush the blockage through. Second the muscles of my abdominal wall start violent contractions to help the fluid now gathering in my intestines flush out the problem.  These contractions of muscles cause anything and everything on either side of the blockage to leave through the closest door in what can be described as a panicked evacuation.  Many of you have experienced this in the throws of a seriously bad stomach flu.  This contraction and evacuation will continue until the blockage is removed or until you are given a medication to stop the action.  In my case the violent contractions are continuing to pull rip and tear on the bits of intestines already stuck in the fissure of my muscles and can in some case push more bits of intestine into more fissures causing more blockages.  And the pain of this action is, well, bit hard to explain other than, holy mutha of all that has ever caused pain.  This is the point where I get the trip to the hospital and start the process of morphine psychosis.  A hospital stay for one of these blockages is usually 9-13 days long.  I luckily have not had to go into emergency surgery, as of yet.  One of the eventual side effects of all of this fun is that a bit of intestine will stay kinked long enough to cut off the blood supply and that section will die, and begin a septic infection.  In those cases surgery happens to open your muscles to remove the dead or dying section and try to avoid the infection that will kill you. Luckily the fissures in my muscles are large enough to allow the intestines to squish in and back out on their own usually over time.  This is quite fortunate in a sisyphean sort of way.  It keeps me alive so I can experience it over and over.

Oral medication is not really all that effective:

My Gi tract has difficulty in absorbing medications.  The same damage that keeps my body from pulling vitamins and minerals out of the food I consume also keep me from absorbing oral medication. Often pills can travel through my GI tract whole and intact.  This becomes a fun game to show the nurses and doctors who don’t believe what they are reading on my charts.  I take the pill from the nurse and in roughly 4 hours, [the normal travel time in my system which is greatly truncated] I point to the little hat in the bathroom and show them the pill.  When you have been through as much GI distress as I have for the past 13 years – seeing a pill in your poop is nothing.  So if the pill does not dissolve it does not absorb. Some meds partially dissolve and therefore partially absorb – but we do not know how much so dosage for me can be very difficult.  This is why I can take 3-5 times the recommended amount and not have ill effect.  It is also why I continual get to explain to pharmacies why the dosage, which I am prescribed, has not killed me.  This is primarily why many of my important medications are given by trans-dermal patch, injection, or IV.  When most people get the flu they can see their doctor and be prescribed the z-pack and run off to CVS pick up the pills and be done.  iN my case, my doctor calls in prescription to the infusion clinic, and I have to schedule time to go into the outpatient clinic for the infusion.  Or I have to go to the ER if it is after hours on weekends or the infusion clinic is too busy.  CVS can’t fill Infusion orders, you have to go to special pharmacies, have special permission from your insurance, have a nurse come to your house to administer and the whole process takes time and lots of money.  It took years to build a case history to help my insurance company understand why I need infusions, a case history built on multiple trials of the oral drug that failed and following hospital stays.  Thank goodness for the Affordable Health Care act which allowed me to buy my own health insurance, because without it I would be back in the “take the oral meds until they fail enough and I get sick enough to be hospitalized” stage.  The home nursing is expensive but in comparison to a hospital stay it is about 1/6 the price.  As the hospital stays cost tens of thousands of dollars, and if I am in for 13 days it is hundreds of thousands. 

So when you get a cold or flu after hours or on a weekend and get angry about that $350 dollar ER bill, count yourself lucky. 

I don’t have the luxury of going to the urgent care when I start to run a fever and pick up a z-pack and hunker down under my covers for a few days of marathon netflicks and popsicles . For me a bout of the flu is a serious threat and can be a real game changer in my plans.  In the past 18 months I have had the flu progress to pneumonia 6 times.  I have been placed on a PICC line for hydration and medication 3 times, and been given regular IV’s the other times.  The gastrointestinal tract regulates the body’s immune system, my GI tract is heavily damaged and therefore my immune system is heavily compromised.  It has been suggested to me that I refrain from exposing my self to germs, live in a sterile bubble.  But to me that is not living.  Interactions with my friends and family are living to me.  I don’t want to live without living, so the cost is getting sick sometimes.  I know this, and I accept this.  It is what it is.

But before you start to tell me or hopefully anyone else to "get over it", when you hear I am down with the flu or pneumonia again, take a moment to understand what you are asking me to “get over”. The one or two sentences in a status report on FB do not begin to scratch the surface of what I am actually going through.

Loss of identity . . . trying not to live as a victim

There is a inevitable course of loss when dealing with a terminal medical condition.  As your body goes through the physical stages of degradation your life as you know it follows.  Beyond the first major milestone of the label of being disabled or sick, comes the loss of your job. This is the first major life change that I am writing about, the loss of my job and in many respects my identity.  Your body can no longer support the needs of your will and your employer will move to relieve their company of it's connection to you.  Who wants to have a dying person around, just think of the insurance costs and the social price of watching someone go through pain in the office.  The office is for work not for sympathy.  So you get the call or the letter informing you that your services are no longer needed.  And you scurry to figure out how you will sustain health insurance to cover the need medical treatments that keep you alive and you start the unbelievably long and painful process of proving to a government analyst that you are indeed sick. And you try desperately not to allow the fear and worry about where will the money come from adversely effect your already precarious health.  In my case, stress aggravates my GI tract and starts the chain of events which puts me into the hospital with very dangerous intestinal blockages.  So I have to rise above or get taken under in the rip tide of how my body responds to stress.  But you do what you have to do, right. You fill out the applications, write the 78 page addendum to your medical history, you gather and submit 10 years worth of medical records. You carefully and methodically jump through every hoop and over every hurdle cause you have to, and there is no one there who will do it for you.  And then once you get some semblance of stably in place you take a breath and look around, and finally see the strange place you are now standing in.

For me that place was scarily unnerving. All my life up to this moment had been about the pursuit of dreams, and realizing potential.  Years of schooling, training, the endless slog of a budding artist, the ongoing slog of the established artist and the never-ending search for the next gig.  I had stacked up review, accolades, awards and all manner of resume boosters in the wake of my march towards the prize of becoming an actor and professor.  And when the full gorse of my medical condition reared it's ugly head in the second year of my graduate program, I virally willed myself over the finish line of graduation.  I then ran from the city where the medical trouble began in search of a teaching gig that could provide a stable income and allow me to continue the pursuit of the art.  But life had other ideas as the education job market plummeted in the wake of serious state budget cuts and I found myself in the midst of another medical tempest.  This storm took things to another level, closer to the end of my dream.  No more film or tv acting, for a while, I told myself, for a while.  I was sliding down the slope towards the abyss when out of the blue the miracle was offered. A change for a 'Hail Mary' surgery that could change things, or at least delay them.  So I took it, hook, line and really big sinker.  The surgery was as successful as it could have been and it bought me some years and it bought me more pain and considerable suffering, but none the less more years.  So what to do with this new time?  I stumbled into a job of prestige that was saving the world.

If I could not follow my dream at least I could save the world.  I threw myself into the work. fourteen, sixteen hours a day.  I liked the distraction.  The work distracted me from the pain, and the long hours caused more pain so I needed more distraction so I worked longer hours.  I must have been sight to my employers, this gung-ho naive soul charging off to her own destruction.  You need that, no problem, I'll make it happen was my motto. I did make it happen, every time.  I naively thought that was enough.  It wasn't, not for them and certainly not for me. My body was fighting it's own battle with my will.  All my life previously I had willed my self through every medical catastrophe.  I willed myself to stand and go on.  But now my body could not follow.  I started having moments of body failure.  I used all the medical tools available to prop myself up and keep going.  I worked 14 - 16 hour days with a PICC line in my arm.  I was still very efficient and capable even when running on only 4 of the 6 cylinders.  So I always got the job done. Until the last one, when my body spoke up in a way that my will could no longer ignore.  On a quiet Saturday in May last year, my body slipped into unconsciousness, my lungs stopped breathing and my heart stopped beating and my skin turned blue.  I  would have slipped all the way into death if not for my husband, who threw me to the ground and pounded on my chest to give me CPR until the ambulance came.  I woke up in the ambulance on the way to the hospital and remember flashes of the overhead lights, the blue metal of the door, the metallic taste in my mouth and the flurry of people screaming at me to, "stay with me."  Following that incident my doctor took me aside and had a "come to Jesus moment" about how my job would kill me within a year, and that she would not release me to return period.  I had a couple of previous medical leaves and each time my doctor warned me that my employment was killing me, that the stress of that job was exasserbating my condition dangerously. She had even gone so far to write, "please stop killing her" on one of my medical release forms.  So I took another medical leave thinking all the while that if I just had a week or so to rest I would be better and ready to go back.  But week after week nothing got better and it seemed only to get worse.  And weeks turned in to months and on the final day of my FMLA leave I got the official call stating I was terminated.  It was a very difficult blow.  I had given everything them everything, I had believed them when they said not to worry because they just wanted me to get well and come back.  It was a deep blow.

But I did not have time to wallow in the shock or sadness, I had to get all the ducks in the row to ensure I would have the necessary medical insurance to continue the treatments I needed to keep me alive. So no time to think or feel, just brush off and go head long into the process.  thank goodness for good friends who helped me keep everything together and get the writing done.  I can't really explain how difficult the process of applying for disability really is.  Just when you are in the middle of having to survive a near death experience and coming to terms with the idea that your life as you knew it is over and your future will consist of pain, medical treatments and more pain, you have to stop and write about it.  Not just write about what you are going through, and been through, but you have to prove that it is happening.  I am lucky I guess cause I have ten years of medical records, and I am unlucky because I have a condition that is rare and not familiar to most.

When you tell some one you have cancer, they have a picture in their mind of what that means.  They see the chemo treatment, the hairless, the body slowly wasting and they get that it is serious.  When you say you have mal-absorbtion they have no idea what that means. When you explain that your GI tract cannot absorb vitamins they still don't understand how that can be a big deal.  Even when you explain how low vitamin levels are fatal and cause every system of your body to fail, they still don't have a picture in their mind of what that means.  Vitamins are a chewable gummy bear and not a fatal blow.  Usually I have to get graphic, explaining that my low vitamin K means my blood stops clotting and I can bleed to death, or low iron and B12 cause my bone marrow to be destroyed and I stop making red blood cells, so eventually I die because my organs don't get oxygen.  This means when you are writing an explanation of why you are disabled you have to start at the very basic foundation and work up from there explaining why my bones hurt like late stage bone cancer, or how my anemia from lack of red blood cells means I have to get blood transfusion every 90 days.  What is almost laughable is that not only are my symptoms invisible to most, but the ones that are seen show up as "positive markers" in most people's minds. Losing weight for a woman is always a good thing.  When I drop 9-10lbs in a week it is the first sign of the dehydration that comes with the start of a bowel obstruction.  But most people would post that 9-10lb loss as a victory.  Now try to explain to someone who has never met you, how this medical condition they have never heard of has left you disabled. And in the process of explaining how you are disabled by this medical condition you have to prove that you are unable to work.  Anyone who knows me, and my work ethic can begin to understand how devastating it is to write a treatise on how you are unable to support yourself and need ongoing help.  It is a tough and emotionally draining thing to do.

But you do what you got to do, right.  So here I stand in the middle of a new void.  Where my identity is someone who is sick and dying.  There has to be power in that, if not for me than for others.  To stand firmly rooted in this new identity and embrace it, without fear.  To talk and write about this new identity in ways that might help other know how to act and react in a kinder way.  Somewhere in the back of my mind I hold onto the hope that something will change, some new medical development, some miracle will come along and give me the chance to be a whole person again, a person who contributes to society again.  I also hear the voices of the doctors telling me to allow myself the space and time to heal.  That I have never taken enough time to heal. That the new life I am beginning may turn out to be miraculous.  Maybe it might.  All I do know is that I have more to do here before I cross over and I am still alive after staring death in the face four times for a reason.   I might still have a chance at touching lives from this new identity.  This is where I am now, it is not going to change and it is up to me to make something of it.

So I will do what I gotta do, right.