THIS IS WHY
I'M HERE.
Most people who watch my streams see a DJ, a gamer, a programmer and somebody who likes technology, music and computers.
What they may not see is what it takes for me to actually be here doing those things.
I live with multiple severe, chronic conditions that affect nearly every part of my body. This page exists because saying "I'm sick" doesn't come close to explaining what that actually means.
What is
gastroparesis?
Gastroparesis means that the stomach is not moving food normally. Instead of the stomach contracting properly and pushing food onward, the process becomes extremely slow or can effectively stop.
There isn't necessarily a physical blockage. The problem is that the muscles and nerves responsible for moving the food aren't doing their job properly.
For somebody who has never experienced it, imagine eating a meal and then having that meal remain in your stomach far longer than it should. You can feel full after only a few bites. You can become nauseated, bloated, have abdominal pain, vomit, and have enormous difficulty getting enough nutrition and fluids.
Diabetes is a major cause of gastroparesis. Long-term diabetes can damage the nerves that control the stomach, including the vagus nerve, which plays an important role in moving food through the digestive tract.
My body has trouble
running itself.
One of the hardest parts for people to understand is autonomic dysfunction.
The autonomic nervous system is essentially the body's background operating system. You don't have to consciously tell your heart to beat, your blood pressure to adjust when you stand up, your digestive system to move food, or your body to regulate sweating. These things normally happen automatically.
Severe autonomic dysfunction means those automatic systems can become unreliable. Diabetes can damage the nerves that control internal organs, including the heart, blood vessels, digestive system, bladder, sweat glands and other systems.
Heart & Blood Pressure
The nerves that help control heart rate and blood pressure can malfunction, making it difficult for the body to respond normally to standing, activity or other changes.
Digestion
Nerve damage can interfere with the movement of food, contribute to gastroparesis and make nutrition and blood-sugar management much harder.
Fluid Regulation
Problems with blood pressure and other automatic functions can make hydration and maintaining stable circulation more difficult.
Other Automatic Functions
Autonomic nerves also affect sweating, bladder function, blood-vessel responses and the body's response to changes that most people never have to consciously think about.
This isn't
one condition.
My health problems don't exist independently. They overlap, interact with one another and make managing each individual problem more difficult.
❤️ Coronary Artery Disease
I also live with coronary artery disease. My heart disease has already resulted in four heart attacks and ultimately required triple bypass surgery.
That history matters because my body isn't dealing with a digestive problem in isolation. I have serious cardiovascular disease on top of everything else.
Type 1 diabetes
complicates everything.
I have Type 1 diabetes, which means my body does not produce the insulin it needs to properly regulate blood glucose.
Normally, digestion and insulin timing work together. You eat, your food is digested, glucose enters the bloodstream and the body responds accordingly.
Severe gastroparesis can disrupt that relationship. If food doesn't leave the stomach when expected, the timing of glucose entering the bloodstream can become unpredictable too.
Fourteen surgeries.
I've had 14 surgeries involving my stomach in attempts to deal with the problems. Unfortunately, those interventions have not restored normal digestive function.
At this point, we're no longer talking about something that simply needs another routine procedure. My doctors and I are dealing with the consequences of a severely damaged system that has not responded adequately to the treatments I've already undergone.
Why I have
a feeding tube.
The problem
If the stomach cannot reliably move food through the digestive system, simply saying "eat more" doesn't solve the problem.
Severe gastroparesis can result in malnutrition, dehydration and significant weight loss because the person cannot consistently take in or process enough nutrition.
The feeding tube
I now have a feeding tube that allows nutrition to bypass the stomach and be delivered directly into the small intestine.
In severe gastroparesis, feeding into the jejunum can provide nutrition when adequate nutrition cannot be achieved through normal eating.
This is what I mean
by
"end stage."
When I describe my gastroparesis as end stage, I'm talking about the severity and the point my disease has reached in my own case — not claiming that every person with gastroparesis has the same prognosis.
I've gone through years of treatment and 14 stomach surgeries without getting my digestive system back to normal. I now require tube feeding because ordinary eating is no longer sufficient for my nutritional needs.
That is a very different situation from somebody who has a mild case of gastroparesis that can be managed by changing their diet or taking medication.
My ability to walk
is slowly
disappearing.
I also have medication-induced parkinsonism. In simple terms, medications have caused symptoms that resemble Parkinson's disease, particularly problems with movement.
This isn't simply about having a tremor. Parkinsonian movement problems can involve slowed movement, difficulty starting movement, changes in walking and problems with balance and coordination.
Something as basic as getting up and walking across a room is becoming more difficult. The problem isn't that I simply don't want to move or that I'm out of shape. My nervous system is having increasing difficulty controlling movement.
That loss of mobility is one of the reasons my living situation has to change. When walking becomes increasingly difficult on top of severe gastroparesis, autonomic dysfunction, Type 1 diabetes and serious heart disease, living completely independently becomes much harder.
Walking
Walking is becoming progressively more difficult. The simple act of moving from one place to another can require considerably more effort than it once did.
Balance & Stability
Parkinsonian movement problems can affect balance and the body's ability to coordinate movement safely. That creates another layer of difficulty when combined with everything else I'm dealing with.
Movement Control
The issue isn't simply muscle strength. Parkinsonian symptoms can affect how the brain initiates and controls movement.
Independence
As mobility decreases, everyday tasks become harder to perform independently. This is a major part of why I now need a higher level of assistance.
I'm still mentally capable of doing the things I love. I can still hear music in my head, build software, program my MMORPG, configure computers and put together a Drum & Bass set.
My body, however, is increasingly putting limits on what I can physically do.
That's an important distinction. The person is still here. The abilities are still here. The body is the part that is increasingly failing me.
Health isn't just
physical.
I also have Asperger's / autism, savant syndrome, Tourette's and agoraphobia. These aren't simply labels on a medical chart. They affect how I process information, communicate, handle environments and interact with the world.
🧠 Asperger's / Autism
Autism affects how I process sensory information, communication, routines, social situations and changes in my environment. Things that may seem minor to another person can sometimes be genuinely overwhelming for me.
When I become overloaded, stressed or overwhelmed, my ability to communicate and regulate what is happening around me can become much harder.
⚡ Savant Syndrome
I also have savant abilities. In practical terms, there are areas where my brain can process or retain information at an unusually high level. Programming, music and technical systems are areas where that way of thinking can be extremely useful.
🚨 Tourette's & Vocal Tics
I also have Tourette's, which means I experience involuntary motor and vocal tics. The vocal tics can sometimes be surprising or confusing to people who don't know me.
Sometimes I will suddenly say a word, phrase, sound or expression without intending to. It isn't me trying to be funny, get attention, interrupt someone, or deliberately say something strange.
🗣️ Why I Repeat Things
One thing that can happen with my vocal tics is that I can latch onto a particular word, phrase, sound or jingle and repeat it. Sometimes it can be something completely random — even something as simple as a word from a commercial.
For example, I may repeatedly say something like "JELLO" or another phrase that has gotten stuck in my head. I don't consciously choose to do it, and I can't simply decide to stop it from happening.
🎙️ The Important Thing About My Tics
My vocal tics can become more noticeable when I'm under stress, overloaded, anxious, tired or dealing with too much stimulation at once.
That means someone who is watching my stream might occasionally hear me suddenly repeat a word, phrase, sound or commercial jingle. It can happen in the middle of a conversation, while I'm DJing, while I'm gaming, or even when nothing particular caused it that anyone else can see.
I am not doing it on purpose. I don't always know exactly what is going to come out, and trying to forcibly suppress a tic can itself become stressful and uncomfortable.
🔊 Stress & Overload
Stress and sensory overload can make everything harder. When my nervous system is overwhelmed, my tics may become more frequent or obvious.
This is one reason a calm, predictable environment can make such a significant difference for me.
🤐 Communication Can Change
There are times when I can communicate normally and interact with people without much difficulty. There are also times when sensory overload and stress can make communication extremely difficult, including periods where I may become nonverbal.
If that happens, it isn't me ignoring someone or refusing to communicate. Sometimes my brain simply reaches a point where speech isn't available to me.
🚪 Agoraphobia
Agoraphobia adds another layer to daily life. Situations involving leaving a safe environment, crowds, unfamiliar places or being unable to easily escape can be extremely difficult.
🎧 Why Streaming Matters
This is one reason streaming matters so much to me. It lets me continue doing things I love — DJing, programming, gaming and interacting with people — without requiring me to live a conventional life.
I'm moving into
a nursing home.
I'm moving into a nursing home because my medical needs have reached a point where I need a level of ongoing assistance that I cannot reliably provide for myself.
My severe gastroparesis means I require a feeding tube for nutrition. My autonomic dysfunction affects the systems my body normally manages automatically. I have Type 1 diabetes and significant coronary artery disease with a history of four heart attacks and triple bypass surgery.
On top of that, medication-induced parkinsonism is progressively affecting my ability to walk and maintain my physical independence.
Put all of those things together and the reason for the nursing-home placement becomes much easier to understand:
What changes
My living environment changes. My medical care becomes a much larger part of daily life. There will be restrictions and challenges that I didn't have before.
What doesn't change
I'm still a DJ. I'm still a programmer. I'm still building my MMORPG. I'm still a gamer. And when my health allows it, I'm still going to stream.
I don't need
pity.
I want people to understand why some days I can spend hours DJing and other days I can't do anything.
I want people to understand why disappearing from a stream doesn't necessarily mean I lost interest.
I want people to understand why moving into a nursing home isn't me giving up.
I want people to understand that my autism and Tourette's can sometimes make the way I speak, move or respond look unusual.
If I suddenly repeat a word, phrase, sound or jingle, that doesn't mean I'm trying to annoy anyone or make a joke at somebody else's expense.
My tics are involuntary. Stress and being overwhelmed can make them more noticeable, and sometimes the best thing I can do is simply let the tic happen rather than fight it.
And I want people to understand that when I say I'm dealing with serious health problems, I'm not exaggerating.
I'm trying to build as normal a life as I can inside a body and nervous system that have become anything but normal.
I'm still
broadcasting.
Music is still music. Code is still code. Games are still games. And a good Drum & Bass set is still a good Drum & Bass set.
Sometimes there might be a tic in the middle of it. Sometimes I might repeat something completely random. Sometimes I might need to step away because I'm overwhelmed.
That's just part of who I am and part of what I'm dealing with. It doesn't mean the music stopped, the passion disappeared, or that I'm giving up.
So I'm going to keep doing those things for as long as my body lets me.
If you want to see what that looks like, come hang out on the stream.
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