Danger: How Negativity About Disability Can Create Chronic Inflammation

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One of my favorite songs is by Bobby McFerrin called “Don’t worry, Be Happy.” This song makes me giggle every time I hear it… Go ahead and have a listen before you read the article because I bet you will have slight wrinkles turning upwards on your mouth that resemble something like a smile!

When things go wrong I always play this song, which, admittedly, many ICU nurses may never want to hear again with the amount of times I had it on repeat over the years. Such a simple motto, yet very hard to execute at times.




We are only human. Negativity, depression, anxiety, and the stresses of daily life are part of the human condition. With that said, this column is not meant to be a guide for how to promote positivity per se, but make folks aware of how negativity in your life can create chronic inflammation, and make you sicker than you need to be. How can you fix a problem if you are unaware of it? Just like an alcoholic cannot proceed down the road of healing unless they are aware they are an alcoholic to begin with.

First off, What is Inflammation?

Inflammation is part of the immune system’s response to danger. It is a hugely complicated process to prepare our body to fight off hostile forces. Inflammation is your body’s response to stress – whether from your diet, lifestyle or environment. Think what happens when you catch a cold. You may experience inflammation in the form of a fever as your body heats up to eradicate the effects of the invading virus. This kind of inflammation is good, but the modern epidemic of chronic, low-grade inflammation destroys the balance in your body. When your body’s systems experience a constant inflammatory response, you become more susceptible to aging and disease.

There are a variety of techniques to reduce chronic inflammation in the body, which I will get into later, but it is especially important for folks with spinal cord injury to be aware of. A negative frame of mind can make your pain worse, increase your chronic infections, send you to the hospital more often than you care to, and create a self-perpetuating downward spiral of agony that may seem impossible to get out of.

Don’t misunderstand me, those of us with spinal cord injuries deal with more challenges than seem fair on a daily basis. There are always folks out there who have a situation worse than yours and better than yours. This is life.

Here are two different ways I could look at my life over the last 7 years since my accident in 2010:

I broke my neck in 2010 leaving me a C6 quadriplegic paralyzed from the chest down. I cannot take care of myself and have to rely on caregivers who have to change me, put their fingers in my bum to help me go to the bathroom, change my catheter, get me dressed, and in my chair. People have to prepare my food for me and drive me to doctors’ appointments. I’m just freakin’ helpess!

To survive my life I have to depend on other people, which can be humiliating, degrading, and causes me to lose a feeling of dignity. I am alone, in chronic pain all the time with pins and needles burning throughout my body, I can’t control my bodily functions, I have to eat a very specific diet, and if I stray from this I can have bowel accidents in the middle of the day.

woman lying in hospital bed

When I just found out my first pressure sore surgery failed and I had a 4 cm hole over my tailbone

I’ve had seven surgeries in seven years, my skin is so sensitive that I have to shift my clothing every few hours just so I don’t get a pressure sore, my osteoporosis is so severe that I can break a bone at the drop of a hat, I’ve spent more time in the ICU at 34 years than I care to recount.

I am jealous of those in wheelchairs who are only paralyzed from the waist down who can live independently and perform their own daily functions. I can’t even hold a fork properly to feed myself with dignity. What about those folks who are able-bodied who simply complain all the time about their marriage or their life or having to drive an hour to work every day? For God sake I am a slave to my body and unable to do anything for myself. Woe is me… Life is hard and I never know what is can happen from one day to the next with respect to if I’m going to end up in the hospital or not.

Here’s another way to look at my situation:

2) I broke my neck in 2010 leaving me paralyzed from the chest down, but I survived. Yes, I’m dependent on others to take care of me, but so unbelievably grateful, no matter if I get a crazy caregiver or not, that there are people in this world willing to help me.

I don’t have a progressive disease that is killing me, I’m not paralyzed from the neck down, I did not have a brain injury, and my mind is perfectly sharp & capable of thinking for myself.

Woman smiling in hospital bed

Three months after I found out about my stage 4 pressure sore I changed my mental perspective and was the craziest happiest person to go in for my second major Pressure Sore Flap. All I could think was I may be in bed for the next six months to two years, but life could be way worse… I could be dying from an infection from the pressure sore. The nurses could not figure out why it was so happy rolling into surgery 🙂

I only have one life to live and while I am paralyzed from the chest down I better live it to its fullest because who knows what comes after death. I am not in a Third World country with a crappy wheelchair, no medical health care whatsoever (despite how terrible it may be in the United States), and totally alone with no family or friends to help me, not being raped or beaten as a child in Africa, etc. The list can go on.

I could choose to sit around all day and be miserable, but instead, even if I was not able to earn an income because of government restrictions, I am able to research, read, and learn new things on a daily basis. I can use my experiences to help folks who are in a bad place in life and offer any advice or kind words when I can.

The way I describe my life in the two different scenarios above both apply. The main difference between the two is my perspective on reality. You may not be able to control your body or certain things that happen to it, but you can control, or at least be aware, of your attitude towards how you approach a situation. Life is hard, there’s no denying that.

For the first several years after my accident I was always very positive, but there was a deep lingering depression and anxiety, which, I strongly believe kept me from getting better physically and mentally. My stress levels were through the roof, which created such an intense amount of chronic stress that led to further inflammation in my body. I developed hypothyroidism after my accident, dealt with a myriad of skin issues and other medical problems that never seemed to end.

I was watching a video the other day on YouTube from a young lady who is a paraplegic and from what I could discern from the video she had full use of her hands and arms. She went on a rant about how much having a spinal cord injury sucks. She then spoke about how we have to use catheters, suppositories for our bowel programs, and just our general lack of independence as compared to those with able bodies. Many folks who are able-bodied can’t or won’t possibly understand what we go through on a daily basis, but we can educate them.

For those who are too ignorant … Well, that’s life. No matter your situation there are always going to be people who are dismissive and insensitive to your situation for a myriad of reasons. Personally, I could get angry and frustrated about this, but I choose to alter my mental perspective with some dark humor. Everyone has their own coping techniques, but developing some type of coping technique is essential in a situation like ours.

Holding onto so much negativity creates such an immense amount of chronic low-grade inflammation of the body that many neurologists still don’t understand the long-term effects of how this hurts our bodies. The mind is a very powerful thing and if you are in a deep depression, have high anxiety, or are just generally bitter towards the world, the first step is to acknowledge your mental state, and make a decision if you want to live your life like that.

If you do, that’s fine… That’s your right and decision. If you don’t, there are definitely steps you can take to change. I don’t care if you are 20 or 80 years old … It is never too late to change. I love this cool image of this man could barely bend over in his 70’s and now in his 90’s he has his legs bent behind his arms 🙂

I can only speak for my personal experience, but there are several things that I do on a regular basis, which does take some discipline and effort, especially on the days that are challenging, with respect to reducing pain for me. I suffer from a variety of different ailments, but pain is the biggest inhibitor of living life for me at times. Some of these strategies include:

  • Food: Many underestimate the power of a healthy diet because there are so many foods that have inflammatory properties, which can flat-out make you sicker. I try very hard to avoid fried foods, soda, white breads and pastries, red meat, etc. I would be more than happy to provide the clinical papers on this, but it’s scientifically proven that inflammatory foods are associated with much higher rates of depression. I have an 80/20 rule in life or happiness … Be good 80% of the time in 20% of the time splurge a little bit.
  • Exercise: For those with spinal cord injuries, if you are a paraplegic it is much easier to exercise because you can go to the gym and you have the use of your upper body. For quadriplegics it is a little bit more challenging, but not impossible. One can easily purchase wrist weights that strap on the wrist, purchase an inexpensive hand bike on eBay, stretch in bed, and, if funds allow, purchase a bike. For even higher level quads you can purchase inexpensive electrical stimulation units on eBay that you can do in bed to keep the muscle mass in your body. There is always something for everybody … It is just a matter of have badly you want it.
  • Meditation or Hypnosis: This is a more challenging one, but spending at least five minutes a day and working your way up on simply sitting quietly and breathing, downloading a free app for guided visual meditations, or taking a class is not a very challenging thing to do. The scientific research on these breathing exercises to reduce stress is indisputable. When you meditate your brain waves change and put you into a trance like state, which I would be more than happy to write another column about, but suffice to say, this is a big one.
  • Writing in a Journal: There’s something therapeutic about writing down your thoughts. You can simply do it on one a touchscreen phone and dictate into it if you don’t have use of your hands. When you write down your negative energy thoughts there’s something very liberating about it because you let that inner hostility go. Try it… Let go of those angry thoughts and commit them to paper. Start with five minutes a day.
  • Human Interaction: For many quads I now it can be very tempting to stay in all day and for some you may not have much of a choice if you don’t have transportation or someone to take you out. If you can’t physically get out of the house to even go sit on the grass and enjoy nature for a few minutes you can certainly go online to find other spinal cord injury groups to chat with. A word of caution though … It can easy to get into a negative chat cycle with those with similar injuries by constantly talking about all of your woes and challenges you deal with on a daily basis. Don’t get me wrong, this is important, but if you are always talking about what is going wrong in your life and you are unaware that you are doing it, how are you going to change this behavior? Perhaps try thinking about talking about one positive thing a day and go from there.

 

The list of techniques to change your outlook from a negative to a positive one are endless, but if you are unaware that you are caught in a negativity trap it can be hard to change your behavior. This can then lead to chronic inflammation, which with spinal cord injury we deal with more than most, and keep you sick or get you sick.

I felt very alone for five years after my injury and I did not speak with anyone about how I was feeling or dealing with life after spinal cord injury. What helps me is helping other folks, writing, working, spending a few hours a week doing something weird and crazy on the weekend, etc. Everyone will have their own techniques, but getting help whether you do it yourself or have someone help you, I believe, is a crucial component to creating a life worth living after spinal cord injury or simply in anyone’s life.

Two ways to look at this picture:

1.) I cannot get out of my own wheelchair and walk down to the beach on my own OR;

2.) I have a loving man willing to pick me up out of my chair so I can experience the ocean for the first time in many years

Two ways to look at this picture:

1.) I cannot walk down this beautiful nature trail on my own because it is not the least bit accessible

2.) I’m going to attempt to off-road in this incredibly powerful wheelchair… I may tip over, but I’m sure as hell going to have fun doing it

Related Feature: Disability-influencers-confide-best-practices-advice-for-staying-mindful-positive-and-grateful-in-our-lives

Ali Ingersoll

Ali Ingersoll is a delightful and beautiful young woman who is famous for her China Quad Diaries where she documented her fascinating trek to China for spinal surgery that would not be attempted in the United States.

She has now embarked on her newest endeavor, aptly named, Quirky Quad Diaries here on PUSHLiving in which she will delve more into sexuality, dating, and generally sassy life adventures. Ali, who loves to make people laugh, likes to do things “just for the story”, and “even if this is a terrible idea, remember it is for the story!” So be sure to follow along as this highly intelligent lady talks about medicals outliers, stock trading, health, dating, pain management and how she has adapted in the six years since her C-6 injury.

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