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.

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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

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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!

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Crazy Medical Stories

My Life

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