We’re Off To See The Wizard – The Wonderful Wizard of Oz

So unfortunately this Dorothy with her Ruby Red cane is going to see the wizard (aka the Neurologist) tomorrow as I've noticed some changes in my condition since my last bathroom spill in the bathroom which was over 2 months ago.

To be fair, Glenda (My Primary Doctor), wanted me to get another MRI since it had been 10 months since my last one. And wouldn't you know it, my insurance company aka Flying Monkeys, said I didn't qualify and Glenda told me to go see the Wizard because he would have more pull with those annoying creatures.

And I put it off as long as I didn't feel any worse and thought it was proactive but I would still approach it with the wizard at my next appointment which was only a couple more weeks away from now.

But then that green wench cackled at me and sent numbness down my right arm where I couldn't feel my fingers at all – not a good sign even in the smallest of realms. Combined that with subtle changes of existing symptoms finally made me do the right thing and follow the yellow brick road to the Emerald City where all my doctors live.

As I poured over all my latest imaging for clues, using meditation to keep the anxiety to a minimal amount – as stress mixed with what equates to a major power line with a short in it does me no favors and takes no prisoners even on good days.

Because of my case being unusual for the diagnosis because of my age, no trauma, and not a lot of symptoms that shot up red flags for
Myelopathy, it laid undiscovered most likely for years. Which unfortunately that is what myelopathy is good at – masking its identity because the symptoms can be so subtle that the root cause isn't found for a while so most myelopathy patients have permanent damage, the only question that remains is how bad.

For example, you wake up one morning like you slept on your neck the wrong way – and after it doesn't go away your doctor orders X-rays that show arthritis and bone spurs. Is your doctor going to think you have a spinal cord injury based on some
neck pain and imaging shows arthritis? Probably not. That's why it's rarely found immediately because it's so subtle, and usually by the time it rears its ugly head – guess what … you will most likely have some degree of permanent damage.

The spinal cord is an amazing tissue/organ. It starts at your brain stem and is about 1/2" and gradually gets as thinner as less and less information "signals" need to get passed the further down your body. It is a your main electric highway of signals that branch off of cord from nerves that give your body every sensation you feel – from the sand under your feet, to a bulging bladder seeking a restroom while you're doing the PP Dance, to every ache and pain you feel.

That's a lot of information for a pipe only 1/2" in diameter – and that's just in your neck. It actually splits off into branches at the end in the beginning of your lumber region. Which makes it a lot harder to get cord compression in your lower back. It's actually incredibly awesome the way we were built as humans when you look at the anatomy of the spinal cord and how it branches off to every part of your body.

Today I'm just grateful that I'm here and can still walk as my cord was essentially kinked or "buckled" in one space and flattened in 2 others – and with the amount of data flowing through this amazing conduit I choose to be thankful that I can still feel – even if it's only pain.

The Pain of Suicide

As some of you know I, like some of you, was deeply affected by veteran suicide of my cousin who was my one and only older brother more than 25 years ago. I was barely 12 years old when I woke up to the news that my 20 year old cousin whom had recently come back from the Gulf War committed suicide by jumping from I-24 overpass.

In the following days the circumstances around his death were called into question if it was even a suicide. Nobody wanted to believe it. I didn't want to believe that he would choose to leave us. There was a special bond that he and I shared that I still can't verbalize how deeply spiritual it goes other than to call it beyond the physical realm. He was my protector, the one who looked out for me, took me to the park on the corner of his street, the one who was 16 years old with his friends over that would still include me in a game of nerf basketball. I was the little sister, the cheerleader who would cheer him on at his baseball games (much to his embarrassment at times).

But there I sat that very morning at his parents house – feeling his parents anguish, my father trying to reason with his brother not to drive almost 1000 miles to Chattanooga, to trust the authorities that they would do their job. I remember going down the hallway of their little ranch, stopping to take one last smell of his room – of him. All that was left for me was a children's bible and his beloved baseball mitt and a couple of pictures.

In that funeral home not even a week later – with nothing but a poster board of pictures of a beautiful soul and flowers. I sat on that sofa, handing his mom Kleenex after Kleenex, trying to comfort a mother and father that lost their only child, even as I was a child myself.

It took me 25 years to completely reconcile with the cause of death was a suicide. After all, who wants to believe the ugly truth. When I turned my attention to genealogy in 2008, to give my son the knowledge and truth of his roots and not just take whatever was told to me as holy scripture, I knew I'd have to do the research as every single person no matter how long they've walked this earth, had a story to tell. As I grown accustomed to state laws regarding death certificates I realized that I would not be able to obtain my cousins cause of death – to put every theory surrounding his death to rest.

So I would be left hung out to dry. I was not going to ask my aunt and uncle no matter what. Being a parent at that time gave me great perspective on the pain of losing a child – and your only at that. It wouldn't be until 2016, after I managed to escape deaths grasp a 2nd time in my life with the severity of my spinal cord injury, that I became determined to fulfill my quests for the truth – no matter what.

During my research I discovered a legal loophole in Tennessee's state law that allowed me copies of the autopsy reports, but not the death certificate. Tell me that's not laughable. What was more astonishing is with a single email to the medical examiners office, a kind man sent me a 14 page PDF of the reports within hours of the very same day. After 25 years, I was going to get my answers. They may not be the answers I wanted to hear, but they would be the facts, and nothing but the facts from a non biased medical professional. I took a deep breath, thanking my lucky stars I took medical terminology in college, and ventured into the rabbit hole.

Suicide is not pretty or any death for that matter. While I knew that he died of internal injuries and it wasn't entirely instant, I didn't know what to expect. That fatal swan dive produced many horrific injuries – any one of them could have been fatal, together it was catastrophic.

7 broken ribs produced a 6 inch laceration his inferior vena cava in the pleural cavity (the section of your body that contains your lungs, your heart, and your diaphragm) – this laceration led to filling that entire cavity effectively suffocating him, crushing his lungs and heart evidenced by blue lips and fingertip beds. Skull fractures and brain hemorrhage and a .13 alcohol level at least gave me comfort he wasn't conscious and maybe the shock was soothed by the alcohol soothed him in his final minutes.

  • Could anyone driving on I-24 that predawn morning have saved him from that stepping off that overpass? Maybe, but I doubt it.
  • Could his friends that he was drinking with that night know what his next move was? Maybe, but I doubt it even knowing the acute situation that set this into motion because let's be honest. How many times do you think your friend is upset about something do you think they are going to commit suicide?
  • Could his girlfriend that was cheating on him with his friend know this would happen? No probably not. Clearly they weren't thinking about him.
  • Could his experience during the Gulf War that would give him PTSD be avoided? No I doubt it. He wanted to serve his country and took that vow to fight our enemies both foreign and domestic.

The list could go on and on, but the point is that looking back after such an event one can ask many questions about turning points, could this person be saved? There is no answer, but I can tell you this.

Suicide affects many people, some for the rest of their lives. It doesn't go away, it doesn't get easier. I still have days where I sob for my loss, I sob that I have to live with my beloved brother in a different way, I sob that I only had 12 years and few memories to keep me the rest of my life.

There is always hope. Strife in ones life can be temporary if you seek help, but suicide is permanent….and it will take out more than just you, but everyone you ever loved.

Courage

Everyday is filled with questions that center around this disease that has irrevocably changed my life forever.

  • What’s the weather forecast?  Humid, Hot, Cold, Rain. Snow – Guarnteed bad pain day.
  • Will I actually get quality sleep?
  • Who will I lash out at?  (Not that they have done something wrong, it’s my frustation with my disease)
  • Will I notice a new symptom or an increase in an already present symptom?
  • When will the next relatively good day be pain wise?
  • When is the next blow going to hit me like a shock wave?

It isn’t hard to wrap your head around being in pain constantly when it’s your reality – what is hard is trying to find the courage to continue to try and have meaningful experiences with a positive attitude.  

It’s absolutely excruciating to not be able to take my son on vacations or even a museum just because I wouldn’t be able to walk and stand for even an hour.  That doesn’t even take into account the pain that comes from transit – even little bumps in the road or ripples in the roads that most people can’t even feel.  It breaks my heart that I’ve gone from high energy used to travel every year to there are days I can’t even leave my bed.  My interactions with my son have been the biggest casualty of this disease.  He is fortunate that his father has made sure he doesn’t go without those experiences that no doubt will shape him as he transitions throughout life.

Every week I see my counselor and she has been a god sent.  By far the emotional collateral damage is exponentially worse than the physical.  The logical side of me which was my primary skill I used in my career so I’m well versed, understands everything in black and white and this entire disease’s effects into all my areas of my life is an easy to accept.  The emotional carnage is murkier than the Muddy Mississippi and emotionally I teeter between denial and anger.  She definitely has her work cut out for her.

Yes I feel robbed and cheated, but I feel that my family – especially my son who is my North Star, has been cheated the worse.  That makes me very angry.  My pregnancy was full of complications.  There was even a time during the first complication the doctors feared they may even lose me, but I didn’t care about me, I was willing to sacrifice myself for him.  I fought very hard to bring him and keep him in this world – even then he was still 8 weeks early.  He spent his first Christmas and New Years Day in NICU – certainly not what any parent wants for their child.  His first 4 years was a constant rotation of doctors and countless medications and breathing treatments.  Then the clouds lifted and life was finally perfect and peaceful at least for a while.

Now I find myself in shambles – like that rickety bridge you contemplate crossing.  There’s a part of me that doesn’t want my son to see me deteriorate into a soul trapped in a broken body that can’t be fixed.  I don’t want that to be his most prominent memories of me.  But being that this started when he was 11 – I’m forced to concede that I don’t have any choice in that matter.  I don’t want to be his burden, even if it’s out of love.

But for now, he gives me the courage to face another painful day.  

The Pain Factor

Life is full of things: love, happiness, sorrow, boredom, anger, frustration and (cue the drum roll)… pain.

Allow me to paint you a picture of my beast known as my myelopathy.  Not only do you have pain 24x7x365 days a year, but you also have extremely limited battery on which to do anything.  Imagine your remote is low on its batteries and you have to hit it several times just to get that one click you need to watch your favorite show. Couple that with pain that changes in intensity with a gust of wind and that has to be managed by several different daily medications, pain patches and opiate pain medication, trigger point injections, and weekly dry needling which is way more invasive then acupuncture, and finally with physical therapy.  

If that wasn’t enough, factor in chronic insomnia where there are days you have only 2 hours sleep on that already dying remote battery.  And as an added bonus, you have myoclonic jerks as an added bonus to having a damaged spinal cord.  Even with medication, you never know when they will strike.  

About a month ago I was carrying a Dunkin Donuts foam coffee cup filled with piping hot coffee, only to have a myoclonic jerk that popped the top of said coffee cup which then splashed said coffee onto my sweatshirt which of course I couldn’t get off fast enough which resulted in a pretty bad 3 1/2″ second degree burn which over a month later still bears a scar.  Fun times right?  You’ve just gotten a portrait of my daily physical existence.

Now granted, I’m not saying my Myelopathy story is the standard.  Because every Myelopathy is different.  Mine is a result of 3 full levels of cord compression and an unknown factor on how long it had been there.  My best guess is since 2009-2010 and they found it in 2015.  

For those of you not in the medical field.. a little lesson.  Your neck is called the cervical spine (C-Spine for short) and is made up of 7 bones named C1 to C7.  C1 is at the base of your skull and is called the Atlas bone and combined with its axis joint is what gives your head movement.  I had cord compression between levels C4 to C7 with signal intensity in C5/C6.  Cord compression is bad enough, but signal changes in your spinal cord that are seen on an MRI is never a good thing.  If they catch it early enough it can be reversed.  

In my case it did not reverse, probably because I had no trauma or indication other that a stiff neck and shoulders since 2009, so really there was no way to tell how long I had Myelopathy let alone how serious it was.  Which leads me back to my now daily life full of pain and fatigue.

Now when something like this happens, you read everything you can find.  What I didn’t find was the untold emotional pain that comes with such a profound cost.  I can’t begin to put into words the emotional cost of this and not just me, but to my entire network of friends and family.  It’s important to address the pain – not only the physical pain but also the emotional.  Pain demands to be felt, it reminds us that we are only human.  Even with continued talk therapy, I still struggle with this on a daily basis but it’s important to remind my fellow victims of Myelopathy, that while our stories are all different, we are not alone in our daily battle.  For those of you that walk along side us in our daily battle, thank you. We are forever grateful to have any support  or a kind word that gives us the courage to face another painful day.