Lessons Learned after First Vacation in 7 years

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. I’ve always been so appreciative of the support my family and friends have shown me, but I tend to beat myself up on a regular basis if I am not staying on top of every little detail, working my butt off, being productive, and trying to make something of myself. Before my accident I worked very hard, but I also knew how to play hard. While my definition of playing has changed over the years, until this trip I was not able to get out of my own head … I kept getting in my own way of living life.

As the days and weeks progressed I went on every kind of adventure with my boyfriend, saw my friends, and started to unwind. After the first week and a half I noticed a drastic change in my mental state and physical body. While my chronic pain persisted, many of my other aches and pains seemed to lesson, my bathroom functions went much more smoothly, my skin did incredibly well for being up for over 12 hours in a chair most days, and I was able to sit back with a glass of red wine overlooking the ocean in the afternoon & just stop. I stopped thinking, analyzing, and living in the future of the next hour, day, month, etc.

It was the most momentous feeling to not think about spinal cord injury for a few weeks, well other than the regular activities I needed to take care of on a daily basis. I’m not sure if I can attribute this to feeling so unbelievably comfortable with loved ones around me and not having a caregiver present. Many of you have read about my caregiving struggles in the past and I thought I would be consumed by thinking about having to train and hire a new main caregiver when I got back. This particular issue causes me the most amount of stress and anxiety in my life. Surprisingly, I did not … Rather, I lived each day in the moment and soaked up the sun, good company, and tranquility around me. Life just ran more smoothly over the last three weeks, which got me pondering what was missing in my life in Raleigh?

While it is still too early to tell I suspect the daily stress and anxiety of caregiving, keeping myself on such a strict regimented work & exercise schedule, and planning every moment of my day is the main culprit. In essence, I have been creating this toxic environment for myself. I need to learn to let things go, realize that if something doesn’t work out with a caregiver, work situation or don’t get to do everything I planned in a day life will move on. I’ve always been constantly terrified of my mother getting older, not being able to help me out, and being stuck trying to figure out who will be my person in life. Living with my boyfriend every day for the last three weeks has been a very eye-opening experience for me because he, not only is wonderful at taking care of me, but is now my person. While my family will always be there for me they have their children, families, lives, etc. I have always felt very alone in this aspect of my life until I met the love of my life. He is there for me no matter what and I am there for him. I’ve never experienced this before … probably because I’ve never allowed anybody to enter my world so intimately.

Life is all about relationships… If you do not build them, nurture them, and grow them you will be alone. In my experience, no one wants to be alone. Being alone, and I’m not talking about taking time for yourself to reflect and be by yourself, but alone in the sense of not having anyone to depend on you or you depend on them.

I feel so blessed to have spent the last three weeks with two people who I love deeply and dearly who also love me. They took time out of their busy lives to help me experience a much overdue adventure. The fact that these two people put their lives on hold for my happiness for a few weeks… Well, not only is it the most incredible feeling in the world, but I still don’t have words to express my gratitude.

I am now back in Raleigh, North Carolina on the hunt for a new main caregiver, back into the work grind, and realities of daily life with a little bit less stress, more happiness, and a Zen -like state of mind. Naturally, it will always be a work in progress, but I will never give up. I do think it is very important to stay focused, exercise, and keep on a schedule, but it’s the enjoyment of the little things in between that I strive to work on.

With respect to my vacation… The adventures are too many to count, but here are a few of my favorites over the last three weeks. Enjoy 🙂

Swimming on Sabrina’s beach in Miami Beach… It was the definition of the most perfect day

My man Cracking coconuts with his Bare Hands

Meeting up with new friends, old friends, and just generally Fabulous friends!

Prancing around island Tiki hut bars, restaurants on the ocean, South Beach Night outs, and just generally enjoying life with my man

Dancing the Night Away

Exploring Tropical Gardens & Museums

Bringing out my inner Silliness

Dinner with Middle school Friends after 20 Years

My Life Long Science Experiment

Check out my new column  on Push Living Magazine at: http://pushliving.com/my-lifelong-science-experiment/

I am often asked when did I get to where I am with respect to acceptance of the accident or how do I constantly manage to make light of challenging situations with dark humor even when things are constantly thrown my way as anyone who is disabled can relate to?

Well, in short, I’m most definitely crazy, but above all I’m a CONSTANT SCIENTIST in my own life … Testing my limits and seeing how far life will take me.

When I think about everything that I have been through I think it is all worth it if I can help even just one person on this earth with advice, humor or whatever they may need.  Oftentimes I end up experimenting on myself for other people. I’ve tried countless measures to improve my life in so many ways and here are just a few examples to demonstrate how I push myself on a daily basis:

Read the Rest … http://pushliving.com/my-lifelong-science-experiment/

🙂

 

 

 

 

My Famous “Underwear” Dates!

When I first started online dating and meeting gentlemen I wasn’t quite sure how things would progress when I reached the bedroom stage of the relationship. I am paralyzed from the chest down with some arm function.  So, in order to get me into bed I have to have somebody lift me, take off my close, clean my catheter, and get me into position. Clearly this is not the most sexy activity and I was not quite sure how I was going to proceed with getting naked with men that I did not know very well.

As multiple dates progressed it was getting to the point where I was probably going to have to stop secret make out sessions around my apartment complex and take them upstairs. I explained to my gentleman callers I had caregivers that would help me with my daily living activities, but I did not explain what that entailed.

Several of these men were courting me and I felt I was at that point and comfortable to where I wanted to dive in and have sex with them. This still left me with the conundrum … How on earth was I going to look sexy for the first time?

I woke up one morning racking my brain because I had invited one of these men up to my bedroom on a Friday night and it was presently Wednesday morning. All of a sudden it dawned on me that I should be all prepared in bed for them so they did not have to do any work. I could put on sexy lingerie, tape my catheter tube to my body so they did not rip it out, lay myself in a somewhat attractive position, and have them walk into my apartment.

The next question that was playing in my mind was how to tell these guys that I would be ready for sex and all they had to do was walk into my apartment. I agreed with my caregivers beforehand that they would hide in their room when the guys walked in in order to not make them uncomfortable.

The term “UNDERWEAR DATE” was born. Essentially, I would be in my knickers and a sexy little blanket waiting for action! I didn’t think these guys would have any problem with the concept as I pretty much could not make it any easier for them 🙂 You must remember that this was a time in my life when I wanted to experiment sexually and I was not interested in a relationship. I needed to explore my body sexually and figure out what worked for me, and what did not. Clearly this would require a little bit of experimentation, a great deal of humor, and a carefree attitude.

“I was trying to be wonder woman in bed! A girl’s gotta do what a girl’s gotta do”

I will not going to details of all of my underwear dates, but I will highlight a few of the funnies. The first guy that wandered into my bedroom was a 6”4 beautiful blonde with a great body. Naturally, I was quite nervous. He opened the door and I hollered from my bedroom for him to walk in. The look on his face was completely priceless… I don’t think he quite believed that I would literally be half naked on my bed for him. I wasn’t quite sure how he would react, but he closed the door, stripped down to his underwear, and literally jumped on my bed.

It took all of my willpower not to laugh out loud because he was in bright purple tiny little underwear. I did brief him on certain guidelines with respect to how my body should and should not bend. He listened eagerly and I think took all the points on board. He had full control, which not many men probably do anymore. He could literally put my body in any position and have his way with me.

There was a lot of laughing, dancing around my room, giggling, and just generally a fun time. Everything worked out from the physical side of things and I was just thrilled. Several hours later the time came when I needed him to leave. I had my little catheter tube taped to my body and I needed to pee … I certainly did not go over this part of the equation with him. I politely asked him to be on his merry way. He seemed completely puzzled that I did not want to snuggle or hang out for the night. I decided not to elaborate, but told him that we could arrange for another “Underwear Date” in the near future as my schedule allowed.

I had envisioned a scenario of how things should work out, and I’m happy to say, everything worked out to the precise detail! There was another gentleman who was several years younger than I was, I did feel like I was robbing the cradle, who was a very tall and blonde artist. He spent much of his time just observing my naked paralyzed body and telling me how much he wanted to paint me. I’m not quite sure I was up for that, but I agreed as I was quite confident I would not be calling him again.

The stories go on, but suffice to say I had a mission and vision, which I executed with flawless precision! These experiences were not so much about sex, but rediscovering my sexuality as a quadriplegic. I was in an entirely new body and prior to online dating I had only dated one guy since my injury. This did not leave much room for experimentation and I was, frankly, curious! Curiosity always seems to get the best of me as I simply have to try new things all the time.

To my fellow quadriplegics who have not yet embarked on discovering their sexual identity I will say this: planning is everything, curiosity is key, openness is crucial, and fun is mandatory!

“Sometimes you just need to sit back, relax, and enjoy life!”

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

SEX & ORGASMS….. Yes Please!

Considering the Quirky Quad Diaries is a blog on “Sex, Sass, and Spinal Cord Injuries” I thought I would dive into the topic of Sex in intimate detail!

Sex … I grew up in a culture in Europe where sex was a very open topic. I was taught to embrace my sexuality and not be ashamed of it, which so many societies, especially here in the United States, seem to shy away from.

Most sex shops are in the back of parking lots and buildings with no windows. I’m not quite sure why as a culture we are ashamed to go buy a porno film, vibrator or any other sexual toy that one desires. Why are we so quick to judge people on race, sexual desires, sexual preferences, etc.? The human condition perhaps?

This spills over into another topic. SEXUALITY & BEING HANDICAP. From numerous conversations with handicap folks and able-bodied folks over the years I’ve come to gather the impression that many people think just because someone is paralyzed that they are not sexual, cannot feel sex, nor do they enjoy it.

This is a very sensitive topic for most and one I am also intimately familiar with. For almost 5 years after my accident I did not think I would ever find love, have sex again, or find someone who would see beyond my disability. Whether you are overweight, short, tall, skinny, disabled, mentally impaired, or different it can be easy to assume sexuality can go out the door. I did not feel sexual, pretty or desirable as I did before the accident, which took me many years to overcome.

However, this particular blog is not about the emotional roller coaster of dealing with sexuality and being handicap. I want to focus on the physical act of Sex. I am constantly flooded with questions from handicap folks and able-bodied folks alike with respect to what the sex actually feels like for me? How about for most handicap folks?

While I cannot speak for everybody I can say that when you do have a spinal cord injury sex dramatically changes. The sexual nerves are wrapped around the bottom part of the spinal cord called the sacrum. If you sustain a spinal cord injury then your sexual function is impaired in the traditional sense no matter how paralyzed you are; whether from the neck down, chest down, waist down, legs down, etc.

As I was preparing to have sex for the first time I had no idea how it was going to feel like or if I would be able to orgasm.

The first question is what is an Orgasm?

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!