INTERNAL HURRICANES

(Before I get started on this heavy blog… I will preface by saying I’m posting photos that are not even a little bit related to what I will be writing about below. However, these photos represent moments of pure Happiness in my life! … And, let’s face it, we all need to keep that happy place in the forefront of our minds at all times.)

Over the course of the past month I’ve pretty much been on a hiatus from life, work, writing, posting blogs, going out, and enjoying life.  For the first time in my spinal cord injury career I developed a severe case of Bronchitis.  As I’ve previously mentioned time and time again being physically paralyzed can pale in comparison to the secondary complications we face with spinal cord injury.  For example, pressure sores, respiratory infections, sepsis, urinary tract infections, etc. are just a few of the major culprits that can take many of us out for the count for weeks, and months on end.

Generally folks with spinal cord injury suffer from just a few secondary complications on a regular basis.  I have always been Princess and the Pee when it comes to severe skin issues with pressure sores and osteoporosis.  Knock on wood I have not suffered from many infections, respiratory issues, urinary tract infections, etc.  However, this past month I was surrounded by a myriad of sick individuals in my household, which finally did me in.  I started with a small cold that developed into bronchitis.

I have many spinal cord injury friends who suffer from upper respiratory infections all the time and I could always sympathize with what they were going through, but I could not empathize because I did not know what it felt like.  I do now!  The challenge with spinal cord injury, especially when you are a quadriplegic with paralyzed abdominal muscles and use your diaphragm to breathe, is that coughing, breathing, blowing your nose, etc. are tremendously challenging.  You don’t have the core strength to bring up all of that nasty phlegm that gets stuck inside your lungs.

So, when you’re stuck with mountains of dark green phlegm in your lungs you literally have to have someone push on your stomach, lean forward, and hack up what feels like all of your internal organs coming out at the same time.  It’s quite a process and extremely exhausting to cough to get the phlegm up & out.  There are, of course, machines that can help with this, but they can come at a pretty hefty price.

“Being an Aunt is the Best”

I have been so fortunate to have my mother and my fiancé help me over the last few weeks on a regular basis every few hours to help me cough and get through the sheer misery of bronchitis.  As many of you know who have suffered from upper respiratory infections, whether you are paralyzed or not, bronchitis is a beast because it can take weeks to clear itself up – if not months.  I opted for a natural route of garlic nebulizers, inhalers, natural remedies, but eventually I had to suck it up and take antibiotics, which I’m not a big fan of.  Slowly, but surely I recovered and life is slowly returning to normal.

What I found really interesting about the past month is how I almost forgot what life was like with constant medical problems.  For almost 6 ½ straight years I was in and out of hospitals, surgeries, and was dealing with some sort of challenging medical predicament.  However, over the last 2 years I’ve pretty much been the pinnacle of “paralyzed health” as I say 🙂 I try and remind myself every day to be humble and realize that anything can happen at any moment in life, but especially with spinal cord injury.  I am always grateful when I wake up healthy, but I was very much surprised to find myself starting to subconsciously take for granted the new normal I had become accustomed to over the last 2 years of being healthy on a regular basis.  It’s an interesting psychological phenomena how the brain can so quickly forget or rather repress traumatic experiences for survival!

I must say last month I felt helpless all over again as if I had just broken my neck 8 years ago.  I couldn’t believe the rush of emotions that were overcoming my psyche on a daily basis.  I felt as though so much of the mental progress I had made over the last several years to find an equilibrium of happiness had just flown out the door as I was coughing, crying, and cursing at the world for weeks on end.  I just couldn’t stop thinking how unfair it was to be paralyzed.  Seriously!  I’m not sure if I was in shock when I first broke my neck, but I never went through any kind of grieving or depression after my accident.  I was a girl on the go working towards recovery and survival, which did not leave much room for mental healing.

“Yes, yes… Being fed a delicious salad by a loving mother in the pool… Definitely a spoiled moment :-)”

Years after my accident I had regressed to a point where I just didn’t want to go on anymore because I had completely skipped over the phase of grieving for the fact that I had broken my neck those many years ago.  I worked very hard at trying to deal with my feelings and eventually I thought I had healed.    For the most part I wake up pretty happy every day, appreciate that my circumstances could be way worse, and really don’t complain about much of anything.  Many compliment me on my positive attitude, my perseverance, my determination, etc.  While I appreciate so many of these compliments more than words could do justice, this past month I realized something quite profound with the help of my therapist.  By the way, I think everybody in the world should have a therapist. … We all need help in some way on a regular basis 🙂

REALIZATION

As I was being tended to day and night over the past month I started to develop a slight feeling of anger.  I am completely physically dependent, especially in times of medical issues, on others.  I always say please and thank you a thousand times, tell those helping me how much I appreciate it, profusely show my gratitude to everyone in my life, etc.  I couldn’t figure out why I was and am still to an extent having these feelings of anger, sadness, and helplessness after eight years of the accident.

I even find myself creating self-sabotaging behaviors in my life, work, etc., and I just could not figure out why.  It’s something that’s been on my mind for a while, but I usually just push down the feelings, push through my day with a smile on my face, and go about my business.

I was recently at a therapy session and explained to my therapist how I felt.  For the past year I have even put on a brave face for my own therapist, which is so contradictory because they are the ones that you are supposed to be completely open about your feelings to.  I finally broke down and told her how I was feeling, and she looked at me with a heartened glance.  It’s as if I was having an “Ah-Ha” moment in my life all these years later.

I have read so many psychology books for work, my personal life, life, etc.  I love the study of psychology as I am intimately familiar that we generally use about 5% of our conscious mind on a regular basis, leaving 95% of our subconscious mind to create all kinds of menacing unconscious thoughts, feelings, etc.  Basically, we have two brains – an analytical one and an emotional one.  This is no surprise, no breakthrough, and I’ve always been acutely aware of these facts.  However, this is precisely my problem with so many things in life.  I like to work with facts of life. I acknowledge that emotions are important, but I have always tried to keep them at bay for a multitude of reasons in order to live a mentally balanced life.  It’s almost as if, for the first time in my life, I acknowledged, what many in psychology call the “Shadow Self.”

THE SHADOW SELF

For those of you unfamiliar with this concept… A brief Wikipedia excerpt:

“In Jungian psychology, the “shadow“, “Id“, or “shadow aspect/archetype” may refer to (1) an unconscious aspect of the personality which the conscious ego does not identify in itself, or (2) the entirety of the unconscious, i.e., everything of which a person is not fully conscious. In short, the shadow is the “dark side”.

Because one tends to reject or remain ignorant of the least desirable aspects of one’s personality, the shadow is largely negative. There are, however, positive aspects that may also remain hidden in one’s shadow (especially in people with low self-esteem, anxieties, and false beliefs).”

I’ve always been aware of my shadow self, which I really thought I was in tune with, but I was trying to have my conscious mind control my unconscious one.  This is such a silly concept now that I think about it because it’s like a lion tamer thinking that they can actually tame a lion, when in reality the lion can come up and tear you to shreds any time it chooses.  If you feed it just enough it won’t attack you, but if you keep ignoring it and not feeding it – no matter how experienced you are at taming a wild beast – it will attack you none-the-less.

“I just want to nibble my little niece up every moment of the day!”

I sobbed to my therapist that I couldn’t understand why I was having feelings of anger in life or towards some people that were trying to help me or why was I sabotaging myself and some of my work endeavors when I 90% felt happy in life.  I am so grateful for everything I have.  She explained to me that there is an unconscious part inside me like a little child, very common in psychology, which had been repressed, and pushed down for so many years that she was trying to be heard in any way possible.  Often times, many folks give the unconscious part of their psyche a name.  I named my Panther just yesterday.

My therapist then explained to me that Panther never gets to come out to tell anyone how she feels.  I was really fighting my therapist on this because I could not understand why Panther should be upset when she has everything she needs in life?  Again, my therapist pointed out that I may have everything “I” need in my life, but she certainly does not.  She never had the chance to grieve over the accident, she always has to put a smile on for those helping her no matter what otherwise the fear of people leaving her when she needs help terrifies her to death, she never gets to cry, I am always telling her to be quiet and shut up, and she is constantly being bullied by me.

We went into a role-play scenario next where I was going through a self-talk exercise when I mess something up with work or I don’t do something as perfectly as I would like, etc.  At first I thought it was kind of silly, but the way in which I spoke to myself when I don’t do something up to my standards is completely appalling.  I was telling myself how much of a failure I am, I’m not going to be successful in this or that, I should never complain about anything because I am so lucky, I am worthless, etc.  I would honestly never talk to my worst enemy in this way, yet I was talking to myself like this on a regular basis?  “What the hell” I thought to myself!

My therapist was telling me that I am literally repressing an internal part of myself on a regular basis and she is starting to fight back after all these years.  She wants to be heard and her subtle ways of trying to come out as I try to rope her down is to sabotage me and my feelings, emotions, and personal behaviors.  No one else in the world can see it … In fact, most people think I am the type of person who has everything completely together.  Truthfully, I feel like I am too, but clearly I am ignoring a very large part of my unconscious being who is just not standing for it anymore!

” Sisterly Love”

My therapist told me that it is okay to still grieve for the fact that I broke my neck, to be angry, to have bad days, and most importantly to vocalize it to myself.  I honestly thought at this point nobody wants to hear about the way I am feeling because breaking my neck is pretty much old news in my book, but clearly an internal part of me still grieves for the fact that I can’t do anything alone, I need help all the time, and it’s like she’s angry at me for taking that damn dive, and ruining her life!  Again, I must reiterate the “conscious” part of me does not feel this way, but apparently the “subconscious” part of me still does even though I am not in tune with her yet.

What I find incredibly fascinating is that I’ve always been aware of this concept in psychology, but clearly I was not making a connection in my personal life.  Sure I may have had the first part of my breakthrough with my therapist recently, but the work has barely begun.  I now have to start listening to “Panther.”  I have to pay attention to what she’s trying to tell me, when she is angry, when she is sad, and literally just sit with those feelings.  I hesitantly told my therapist that I did not want to listen to her because she’s constantly trying to sabotage me, so why would I want to be friends with her?  She told me that I don’t have to adopt her behaviors, but that we have to find a way to live together.

Honestly, I have no idea what this actually means.  I have been having overwhelming emotions recently by just listening to her, which makes me terribly uncomfortable because I am a smiley happy person, and this exercise completely drains me.  I’m not quite sure how I will create a new mental roadmap for myself in the future, but the journey has definitely begun.  This blog goes out to Panther 😉

“No words… Priceless”

CONCLUSION

I started out with developing a simple, yet annoying, case of bronchitis and have ended up with a realization that life is this constant struggle, and mostly a struggle with yourself!  I wish I could say I felt better, but I know the hard work is just about to begin.  However, every fiber of my being just wants to experience happiness, but you cannot have the Ying without the Yang!  After reading this blog and thinking critically about your own subconscious being … What is he/she telling you?  What are you repressing on a regular baasis to just survive?  What is your childlike version of yourself screaming about?  A lot of interesting points to ponder in your own life 🙂

Let the self-exploration and discovery begin!

An Engagement to Remember

… I was staring at a blank page while thinking how to write the perfect article on how I got engaged this past weekend. My mind kept wandering back to when I was first injured in 2010 laying in my ICU bed with tubes coming out of every orifice of my body, a neck brace immobilizing my head, and copious amounts of morphine coursing through my veins.

I distinctly remember several people huddled around me, thinking I was mostly unconscious, commenting on how devastated they felt that I would no longer be able to live a full life and likely not get married or find love. I know it was not meant to be hurtful as they were just intensely concerned for how my life would turn out, but I recall thinking at that exact moment the romantic part of my life was finished …

… The point of complete comfort, love, intimacy, and trust came for me when he saw everything I physically had to deal with on a daily basis. I always joke, but up until I met my fiancé I would never go out in public or let a man see me without mascara and eyeliner on … Seriously! One day I decided to not wear any makeup and he told me how utterly beautiful I looked, and that he actually preferred me without makeup. It was at that moment I knew I had a keeper; okay maybe there are a few other things that made me know he was a keeper, but that was definitely a big one for me …

Read the rest on Push Living Magazine: https://pushliving.com/an-engagement-to-remember/

 

 

 

Life’s Sacrifices & Choices with Spinal Cord Injury

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When we are growing up we are faced with all kinds of choices a consequences and as children that we are blissfully unaware of.  Do we want a cookie or a doughnut?  If we finish our vegetables then we get dessert; if we go to bed early than mommy will read us a bedtime story, etc.  At a young age we don’t really associate making a choice with sacrificing one thing for another either.  It’s only as we develop into young adults that many of us come to the realization that everything in life is a choice, sacrifice, or compromise.

Choices and compromises become exceedingly more complicated as we grow into adults.  If we want a family, then we have to save to have a baby; we can’t go on that family vacation because we are trying to save money to buy a house; if we keep eating donuts every day then we run the risk of becoming obese; the list goes on.

I was thinking about sacrifices and choices the other day as it relates to spinal cord injury, and more specifically, the compromises I have had to make and continue to make as a C6 quadriplegic.  As I was pondering some of these choices lately I was surprised at how many things I have had and will have to give up in my life.  I was having a challenging day, so of course this was a glass half empty point of view, but after waking up the next morning feeling more like myself I made a list of the things that I have gained, and given up over the last 8 years since my accident in 2010.

Living with spinal cord injury presents such a unique set of challenges that many folks, unless you are the one injured or know someone who is, may not think of on a daily basis.  I often play this game with myself because while I know that I am faced with seemingly insurmountable challenges at times, there is always someone who is dealing with A LOT more than I am.  This is not to say that we should go around comparing ourselves to other people, but I do find pausing on certain days to take stock of what you have in your life is a quality many of us lack.  This age-old saying may seem outdated and redundant, but I personally find that it rings true when the proverbial “ship hits the fan” in people’s lives … “You don’t know what you have, until you’ve lost it.”

Here are a few of my choices over the years: Continue reading

Caregiver Neglect and Abuse – The Legal Side – My Recent Story

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Over the years I have spoken with dozens and dozens of fellow quadriplegics who seem to share in the story of having their caregivers leave without notice, emotionally abuse them, physically abuse them, and so many other horrifying tales. If you know me or have read some of my blog posts you will know that I, too, have had more than my fair share of horrifying incidents with caregivers. This blog is not to recount what has happened to me, but rather shed some light on interesting facts I have discovered over the last month due to a recent caregiver leaving me with no notice, no phone call, no text, etc. I have learned some useful tidbits of information and also picked up on some tips & tricks for the hiring of future caregivers, which I hope will help some.

Six weeks ago I was on the hunt for a new live-in caregiver several days a week and after interviewing several my entire household agreed they liked this one particular lady. I don’t use caregiving agencies because they are too expensive and cannot cover the hours I generally need, so I usually look to care.com and Craigslist as so many other quads in my situation do as well.

I think my caregiver radar is broken, so I like to have other people’s opinions to help me choose my caregivers these days. She did really well, was pleasant, a fast learner, and told me repeatedly how much she loved working with me. I was thrilled as I thought perhaps, this time, just maybe we would find one who would stick around for a while.

Anyway, things were going swimmingly, in my opinion, and two weeks ago after one month of employment she simply did not show up the night she was supposed to come into work. She left all of her belongings at my house and we were all completely dumbfounded. I called her multiple times, texted her, but to no avail. Naturally, my first thought was that she was in some sort of accident and was in the hospital. I was worried. Normally, when caregivers leave they take their stuff (secretly I might add) and just don’t come back. When this happens I usually just let it go because I am in such a rush to find someone new that I don’t have time or energy to follow up.

This time seemed different. Continue reading

“SCI” SUPER MOM’S – An Endangered Species!

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A little over 10 years ago BBC produced a television mini-series called “Planet Earth.” They spent five years filming unique exotic environments, plants, and animals all over the world. There was one episode where the film crew spent months in subzero Himalayan temperatures trying to film the endangered snow leopard. After many failed attempts they finally caught the snow leopard on camera for the first time. These leopards are so unique and not many exist, that we know of, in the world today.

An “SCI” (Spinal Cord Injury) Mom is an endangered species of human being, like that of the snow leopard, that are far and few between throughout the world. In general, the bond between a mother and child is so unique and unbreakable. When a child has a severe injury, such as breaking their neck, a mom goes into protection mode in order to provide the safest, best, and happiest environment for their child. However, not all moms are cut out to be SCI moms.

An SCI mom goes above and beyond, dedicates her life to her child, puts their needs above their own life, and puts up with more heartache than perhaps even the child going through the injury themselves. Generally a child starts fleeing the nest in their 20’s, starts their own life, and the parents move on to other adventures in their life because while their job is never done, the daily nitty-gritty caring aspect for their child is complete. With a spinal cord injury the reverse happens.

   

A dedicated and loving family member puts their life on hold once again to care for their injured child as if they were a baby, but it never ends. Continue reading

Lessons Learned after First Vacation in 7 years

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I took my first adventure vacation after 7 years over the last three weeks to my old stomping grounds in Miami to visit friends, family, and just generally embark on a mission to play. I had not taken a vacation for years as I was dealing with one medical disaster after another year after year. To be honest, I had forgotten what it was like to have fun for more than a few hours on the weekend.

I planned this trip last year, but due to caregiving challenges the trip kept getting postponed and postponed. I started to lose hope that I would ever take this trip when I finally decided to bite the bullet and go for it in September. I was slightly anxious because I did not know how things would go with respect to sleeping on a new mattress, running into further medical issues away from home, planning who would go down with me to take care of me, how my body would handle being up for more than 12 hours a day, the list goes on and on.

I worked myself up into a frenzy four weeks before the trip and to top it off I ran into further caregiving issues, which left me with my mom and boyfriend to accompany me down to paradise. I was unsure how the dynamics of my mom & boyfriend taking care of me would work as it was the first time in seven years I would not be taking a caregiver with me. To top it off, while my mom is the most young & fit 71-year-old I know, I was concerned it may be too much for her. The list of anxieties that ran through my head prior to the trip was overwhelming. Most people go on a vacation to unwind, but prior to my trip I just could not see how I was going to do this.

I had not realized over the last seven years how much anxiety and fear had built up within me on a daily basis with respect to thinking about 1,000 things that could go wrong being paralyzed on a daily basis. Many of my other quadriplegic friends deal with similar struggles as I do, but many of them seem to just go with the flow. My body is particularly sensitive with respect to pressure sores, broken bones, etc. that had literally forgotten how to unwind. I am generally so focused on surviving life that I forget to live it sometimes.

Day 2 in South Beach… Soaking in the reality of where we were

When I arrived in Miami it took me several days to kick back and start enjoying life.

Continue reading

SUICIDE … The Forbidden Topic … My Dark Side

Suicide, especially in the United States, is a topic of conversation frowned upon for those who cannot fathom what it is like to be in such extreme emotional or physical pain. Regardless of disability there are times in life for many folks where life simply does not seem to be worth living for a multitude of reasons. It can be challenging for people who are happy with their life to understand how anyone would want to end theirs because life has so much to offer in their view. To this I respond, unless you have been down that deep dark road of complete and utter desperation it can be very challenging to relate to a suicidal person’s state of mind.

I, too, used to share the mind frame of not understanding why anyone would want to end their life. I have always been the type of girl who is ridiculously positive, finds humor in life despite challenging situations, and pushes myself out of any kind of funk I might have in a relatively short period of time.

Don’t misunderstand me, I had always understood that deep depressions, anxiety, disabilities, etc. could lead people down dark roads, but believed that anyone could come back from the dark side with help. In my opinion, this may or may not be true now. I do believe everyone has the right to choose if they want to end their life or not. There are so many wonderful things in life to live for, but when one is in a state of complete hopelessness it can be challenging to come back from this without help.

When I broke my neck in 2010 I was one of the fortunate ones to never go through a major depression, constantly push forward, have an incredibly supportive family, the resources to continue to live my life, and work. Many folks are not as fortunate to have a situation like this. Throughout years of medical hell, intense chronic pain, and countless other complications I still managed to laugh, build a life after the initial trauma, and continue forward. I wasn’t happy, per say, for many years, but I managed to make the best out of an awful situation.

Life came to a screeching halt for me three years after my accident when I moved to China for spinal surgery. I could not have possibly prepared for what happened next to me over the course six months in 2013. In the beginning of 2013 we discovered I had a massive cyst in my spinal cord. We decided to move to China to undergo second major spinal surgery with some world-class Chinese Surgeons.

“After Surgery”

After surgery I developed excruciating chronic pain at the site of the injury on my neck in addition to my already burning chronic pain of pins and needles due to nerve damage from the injury that so many Spinal Cord Injury folks suffer from too. Four weeks after surgery my physical therapists put me up in a walking frame in my neck brace in order to get me moving. Within 10 seconds of being in the standing frame (unbeknownst to me at the time my osteoporosis had deteriorated severely) I heard a large crack in my kneecap, and my nerve pain when shooting to a level that was off the charts.

Video of me in the standing frame 10 seconds for my injury: http://www.youtube.com/watch?v=LvxxVDzaBvk&feature=youtube_gdata

To make a long story short I had just underwent spinal surgery, developed severe acute and then chronic pain in my neck making it challenging for me to even sit up, and my femur (knee cap) + shinbone cracked straight through. I was bed bound and mentally alone in China for many months to follow. The Chinese neglected to tell me my leg was broken and it was not put in a cast to top it off (very long story). I couldn’t move, my blood pressure was through the roof for months, my nerve pain was higher than I could even put in words, I could not move my neck left or right, I was sweating profusely above my level of injury, and I literally could not move.

There were no immediate solutions to help me except wait. I was crying all the time, I could not breathe very well, I had radiating pain through every fiber of my being, I couldn’t think coherently, I could barely form a sentence without my voice shaking because the pain was unbearable, my entire support system was back in the United States except for my parents, and I certainly could not think how I was going to survive from hour to hour.

“Life Ebbs & Flows”

I definitely have an A type of personality, like to think critically, pride myself on working hard, thinking hard, and finding solutions to problems. This was the first time in my life I literally felt paralyzed, not just in my body, which I had become accustomed to, but in my mind. I could not fathom a worse form of torture for myself than what I was going through — mental parallelization. Continue reading

Friendships – Navigating the Waters after Spinal Cord Injury

This is a very tricky topic of conversation to navigate as friends, family and caregivers read what I write, but I will give it a go as to my personal experience over the last seven years. Naturally, after a major traumatic incident, whether you are the one injured or a friend/family of an injured one, people can react quite differently to a disaster.

With respect to loved ones and friends, they can either be super supportive or seem to do a 180° turn around to leave you seemingly high and dry. A traumatic event can really show you who your friends are, but at the same time can create quite a lot of animosity, and frustration for many that are injured. Often times you can feel abandoned or forgotten about. I think what is not discussed is how a traumatic event can also affect those around you. Some people can handle it with elegance and grace, and some people can feel just as traumatized as a person who is injured.  Feelings can get hurt, emotions can run high, and relationships can be pushed to the brink.

To add to that, when you break your neck it can seem as though people are abandoning you after the initial acute phase of the injury. While there are definitely some friends and family out there who are not up for the task of handling life after disability, I don’t think it should be discounted that friends and family also have lives, get married, fall in love, start their own families, etc. This can be challenging because, from my personal experience, it can feel like everyone else is moving on and you are stuck in the same spot … sometimes for years on end.

I am the type of person who is organizer. I usually always call friends to hang out, and while we have a great time when we do so, the sentiment is not always reciprocated. Sometimes you want people to reach out to you.  Sure this can hurt and feel lonely, but, as mentioned above, people also have their own lives. Spinal cord injury can take up your entire universe and it is only natural to want to have people around you at all time to share the challenges with you. I think if you have even two people in your life who are there for you then you are doing pretty well regardless of a disability.

 

Sisterly Love is Forever

Continue reading

Welcome to the “Quirky Quad Diaries”

This blog and website has been a long time in the making. I created the Quirky Quad Diaries on my personal Facebook page over the last year and a half. Several months ago I realized I had over 80 pages of blogs written on Facebook, but they were lost to the news feed.

So, I got off my butt and decided to create a website & blog to share my stories. Now, you can browse my stories, blogs, and other sections of this website at your leisure in an organized manner.

I created the Quirky Quad Diaries to share stories of my life experiences before and after the accident, crazy adventures I have experienced, things I have been through, and so much more. Hopefully, and above all, I will make you laugh, but I may make you cry, shock you, and hopefully will be able to bring a little joy to some people’s lives 🙂

I will do my utmost to post a blog each week unless I am on some sort of crazy adventure.

I have created multiple sections for this blog, so please poke around and explore!

About Me

Blog

Pictures

Crazy Medical Stories

My Life

Get Involved

Magazine Articles

Please feel free to reach out to me as I love to help everyone and anyone in any way I can!