Voluntary Hostage Situation

This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.

I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.

Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.

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JOINT CUSTODY (A Multi-Year Settlement Agreement)

Pain.  Chronic pain.  It’s no joke.  It’s debilitating.  It can lead to death.  It can be physically and psychologically crushing to your soul.  Living with physical paralysis, for me, pales in comparison to pain.  If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis.  This is a pretty powerful statement if you think about it.  I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc.  Think about what I am saying. 

This is how debilitating my chronic pain is.  For anyone who lives in chronic pain, your life has been undoubtedly changed forever.  I know mine has. 

When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times.  I thought “this was the worst of it” to myself.  Wow, was I in for a rude awakening 3 weeks after my accident!

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How Expensive is it to be a Quadriplegic? A Grim Reality

Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life.  However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis.  The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!

For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic.  In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc.  While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular. 

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