Tag: CRPS

Take Care of Maya, my thoughts.

Living with an invisible disease or illness can be a very pain staking and unbearable reality, be it a form of a severe form of arthritis or some other means. From a human standpoint, it’s easier to understand when you can physically see it with your own eyes, it’s easier to understand someone having a broken leg or some other visible aliment, it becomes much harder to understand when a person has an unseen war happening inside it. Some months ago, the reality of Complex Regional Pain Syndrome (or as it was once known by: RSD Reflex Sympathetic Dystrophy)  was brought into my life by someone very close to me.

At the time, it was something that I didn’t understand, the more time that was spent around the reality of CRPS, the more it was my goal to understand what it is: According to SaintLukesKC.com  it is defined as:

Complex regional pain syndrome (CRPS) is a rare disorder of the sympathetic nervous system. It used to be called reflex sympathetic dystrophy (RSD). It causes chronic severe burning pain in the arms, fingers, palm of hand, shoulder, or legs. If not treated, the pain and weakness may lead to limited use of that body part.

There are 2 types. They only vary depending on if you have had nerve injury. Both have the same symptoms and outcome. They are:

  • CRPS type 1. This is if you have no past nerve injury.
  • CRPS type 2. This is if you have had nerve injury. CRPS type 2 used to be called causalgia.

My intent here is not to be too exhaustive about the medical reality of CRPS, in terms of it definitions and so on, rather I’d like to share in the reality of it. Recently I watched a documentary called “Take Care of Maya” on Netflix, the documentary has made front page news over many outlets and speaks to the reality of a young girl who had been diagnosed with the disease, her mother and father bent over backwards to find care for her. In the many attempts to find the proper care for Maya, many doctors did not understand what was causing such a young girl such intense agony.

            As it were, Maya and her parents would often feel frustrated by doctor’s lack of understanding. Eventually When they did find doctors that did understand the reality of CRPS they were able to find treatment and the means to provide some relief from the unspeakable pain their daughter was facing. The relief would only last so long unfortunately, and Maya would relapse back into the reality she once knew.

When her father rushed her to John Hopkins All Children’s in Florida, the father tried to explain his daughter’s condition to the medical staff, but none of the staff understood what CRPS was, and upon Maya’s mother via a phone call made every attempt to explain her daughter’s treatment with Ketamine’s and the dosage that her doctor prescribed. The medical staff quickly concluded that the treatment protocol was too much, even when Maya’s doctor called to confirm the treatment was given to Maya.

            The medical staff saw fit to involve a social worker into the equation, thus separating Maya from her family. The conclusion was then put fourth that Maya was a victim of Munchausen syndrome by proxy, which was to say that she was being abused. This conclusion troubled me to say the least, but it did not disturb me nearly as much as it did Maya and her family. On one hand I can understand not knowing much about something you don’t know, let alone a disease like complex regional pain syndrome. But to ensue that she is being abused in such a way even when her medical treatment was confirmed by another doctor is not something that sits well with me. To rip a family apart and cause a family anguish for months, is outrages and inconceivable in my mind.

What stood out the most to me, as a religious person is how Maya’s mother would pray for her daughter before the end of their phone call (which were also monitored).

            Her mother had a way of always telling her daughter to be strong, which is something to be admired. Through watching this documentary, one could see how stoic her mother was trying to be for her daughter, and yet on the inside of her own heart she was being torn to shreds. There is one crushing scene, when the family is in a court hearing against John Hopkins, the family lawyer asks if Maya’s mother could simply hug her doctor and the judge denied the request. What the hell for? What harm would a mother hugging her daughter done? If anything, that one simple hug could have anchored them for much longer.

That denial from the judge, unfortunately drove Maya’s mother into a much deeper despair. One that she would not bounce back from. This put me on edge, because while there is a part of me that rejoices that a documentary such as take care of Maya exists, it still leaves us with a intense uphill battle. CRPS is not something that is made up in the human mind, it is a reality of unseen constant pain that I’d personally wish on no person. CRPS can take so much from someone who was once very active and leave them fatigued and in constant pain.

            When you see first-hand (as I have) how such a disease can overcome a person, it can become easy to grow frustrated for them. Especially when they’re suffering from intense tremors in their body, and the screams of agony that comes from them. The frustration with the medical system, the lack of knowledge that still exists and the ignorance that resides in people still, simply because a person doesn’t “look sick” outwardly. All this to say that it is highly encouraged to watch the documentary “take care of Maya”. Perhaps to start gaining an understanding of what it is, if you know someone that has the disease. A simple internet search will bring you at least a base level of understanding regarding it.

In my belief, doctors should at least have that same base level of what CRPS is, at least so that they are aware, and are then able to have understanding and show compassion. And not assume that this is merely a made-up reality. As mentioned before,  this is an uphill battle,  one that I believe requires us (sadly) to remain poised, patient and  ready to continually educate, as redundant as things may be.

Honest Thoughts on Transable-Ism

            In this blog I’d like to share some very candid thoughts, on the reality of the Transabled movement. The reason that I’ve chosen to use the wording of movement, is simply because this isn’t a new issue so to speak. Yet in has been gaining much more traction in recent years. I’m also profoundly aware, that my thoughts might very well offend some, however in as much as my aim is to live at peace with others (both online and in real life) sometimes truth, for the simple nature of what it is, offends and cuts beyond the human flesh and understanding.

The reality of being transabled falls under what is called Body integrity identity disorder (BIID).  This disorder is when a person has the desire to have their body medically changed into a physical impairment of some kind, whether that be visually impaired, amputee and even paraplegic.

In college this was a topic that I spend numerous hours, writing a term paper on. Somethings that caught my attention in a shocking manner, were people wanting to become blind and to accomplish such a task. It involved having acid poured into their eyes. I’ve known visually impaired people through out my life, and sometimes their desire to want be able to see is great.

In a sense they would do anything to see, even if it were a mere moment, they would never think of having acid poured into their eyes, my girlfriend has CRPS, due to a horse stepping on her foot and breaking all the bones in her foot, as a result she had to get her right foot removed. Her condition is not visible to the human, but what most people don’t know the amount of pain that she is in every day. Again, most everyday she wishes that she could get some sort of relief if for a moment. She wouldn’t wish what she must go through on anyone.  I myself have lived with cerebral palsy for thirty-eight years, have had a handful of major operations on my back and lower body. The thoughts that flow through my mind the most, are wishing that my right-hand full use, and that my legs were able to do things that most of us take for granted every single day.  

            While the reality of mental health issues is very real, this in my opinion is much deeper than the mind. It is a profoundly spiritual one as well. This is a battle between good and evil, these people that want to have their bodies willfully changed to live as someone with a disability, are still people made in the holy and beautiful image of God. On the other hand, because we live in a fallen and broken world, the mirror that we as humans have, reflecting the image of God is broken. As such, the enemy, Satan attacks people in the best place that he can overtake them, that being the mind. As a Christian, is it is of great importance to pray for these people and pray for them.

It is of equal importance then, to confront the lies of the enemy with truth and love. And the truth is that, as a society we are being deceived and lied to. The Bible tells us that we are not our own (1 Corinthians 6:19-20). Our bodies are gifts of God and as such we should honor our bodies by taking care of them and not destroying them. I can assure you that it is not in the heart of Father God to have people doing these things to themselves, yet because many of choose not to listen or adhere to Gods voice and word sin and brokenness play out.  What causes my heart even more grief, not to mention how much it grieves and angers the heart of God as well, is the mere fact that medical professionals (doctors) are allowing such atrocity to take place in their own practices.

            It’s as though the reality of doing no harm, means nothing to them anymore to them anymore. Unless it puts a percentage of money in their pockets, which they should be filled with shame for. Licensed mental health professionals, should be doing whatever they can to steer their patients away from the idea of radically changing their bodies in such a great way. One that will change their lives forever, without being able to truly weigh and not the consequences that can follow such a decision. This may seem strong, but medical and mental health professionals who give a green light for people, to go through with such a desire should not be allowed to practice any longer.

Once again, it may seem harsh that my conviction is to strip medical professionals of their ability to practice, who do great harm to others in this way, by virtue of pandering to one’s desires. The questions that we must ask ourselves as a society, is how far we are willing to let this slippery slope go? How much more will we allow people to willfully destroy their bodies before we wake up from our sleep and say enough is enough?  I can’t speak for anyone else, but I’m tired of seeing society progress more and more into emptiness.

            It’s time that we as people, start pushing back against these norms, rather than allowing people to go down such routes. They must know that there made in the image of God, they must know that there is purpose in the bodies that God has originally blessed them with. They must know that there is a spiritual war that is taken place for the mind and soul, they must know that nothing else can satisfy them, the way the presence of God can.