A Rush to Judgement on Disability

When I look at my own life though the challenges I face. The biggest problem that I tend to run into is this rather quick rush to judgement about me due to the nature of my disabilities. Though out the course of my life I've had some pretty nasty stuff directed at me as the years have moved on. People are constantly questioning my motives. Or even worse they don't believe me because I don't fit into those narrow boxes of what people who have a disability should look or act like. It has lead to harassment and at times discrimination. 

Going to school was a challenge because I was picked on and bullied a lot. I had to endure so much in school because for some reason the kids felt that I was different. That didn't get any easier as an adult and even now I still face that kind of discrimination that is often overlooked and at times justified. Often by well meaning people who don't realize that such actions and words are noticed. Sometimes they hurt even when that is not their intention. It seems that having a disability, especially an invisible one, still has some kind of stigma attached to it.

Everything that is negative being thrown at you can easily wear you down. If your not careful it can lead you down to a very nasty place if you let it. By the Grace of God I am still standing. As a Catholic I have been able to rely on my faith during some of the more challenging moments of my life. Though Christ I have learned to try, as much as I can, to take the high road. Doing what I can to not hold on to the anger. I realize that some people just don't understand. They do not know what it is like to live with a disability. More so if it is one of the ones not easily seen. They will also be the ones who won't take the time to try and understand. In Matthew 5:7 it says: "Blessed are the merciful, for they will be shown mercy." Part of taking that high road is to follow that wisdom: I have forgiven a lot of people because of their ignorance. My hope is that by talking about what I've faced that I can open up people's eyes a little bit. I pray that people would have some empathy before they make that kind of a rush to judgement. 

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The noise I hear.

Tinnitus. Pretty much defined as some kind ringing or buzzing on the ears. The way that I often explain it is that I hear an extra sound that no one else can hear. For anyone who has it severe it can be a private kind auditory hell.  Not unlike me calling Visual Snow VS for the rest of the post. Any time use the term "the noise" I am talking about my tinnitus.

I've had tinnitus to some extent all of my life. The more I look back on things the more I realize that as I have gotten older the worse the noise has gotten. When I was younger it use to come and go at random. Sometimes it would last for a few moments. Other times a few days. But it always went away. Always in the form of a high pitched tone. Think of a TV station that goes to bars and tone. Trying to listen to that tone for any amount of time. For me however it has gotten to the point that with in the last decade or more I now suffer with the noise 24/7.  It is always present with no "off" switch.

The reality is I suffer with this daily. To say the noise is annoying to listen to day in day out is putting it mildly. For the most part the range and pitch of the noise stays at a constant level. Though at times it can jump up with out warning and stay like that for more than a few days. Making an already bad condition even worse. It can push me to my limits.

What adds to it is that the noise creates a slew of extra problems that people may not even connect with tinnitus. In my case over the course of a decade or more. I've lost about 40% of the High frequency range of my hearing in my left ear. About 60% of the HF range in my right ear. What that boils down to is that I'm losing my hearing. For every bit of hearing that I lose. The noise gets progressively worse. The kicker is part of the hearing loss is directly due to the noise because it is over powering my hearing.

I guess the way that I look at it is that I am dealing with pain in a level that cannot be fully explained. It is not pain in a traditional psychical sense. Hearing the noise day in and day out gets old in a hurry and can wear you thin. I wake up in the morning with the noise already bad and just stays like that. It has reached a point that being in quiet rooms or hearing low electronic hums like from a computer fan can aggravate things. I don't know what silence is.

Because of the nature of tinnitus. At least in my area where I live. Their are no effective treatments. I've been told by some very good specialists that their is no hope or cure. That the noise will get worse. Which only adds to the frustration.

As a general rule I don't like talking about this. I don't like sharing with how this is impacting me on any level. I find that complaining about what I deal with doesn't do me any favors down the road. But I've also come to realize that sometimes you have to open up. You have to share what your fighting on a daily level. People are not going to know unless you open up and explain the challenges involved. If anything I hope you've gained some insight into this condition. If I've been able to do that. Then I consider myself blessed.

By the Grace of God I'm still standing.

-JM

Rising above our challenges.

When ever I am faced with a challenge in my life. Such as in the case of me dealing with the visual snow or tinnitus. Their are only two choices I can make. I can spend my time walling in my own misery. Going from one pity party to the next and feeling sorry for myself. Allowing negativity to cast doubts on who I am. Leading me down a dark and miserable road.  Or I can decide to rise above it. Understanding that the battles I face are just a momentary storm. Knowing that the challenges that I deal with daily do not define who I am as a person. Deciding instead to embrace Christ than to allow that darkness to destroy the foundation. Personally I have found that though Christ I lead a full life. I find that I am able to take on the challenges and stay strong. Even on the days when I feel like I am at my weakest. I want to be known for the things that I do. The work I have going on with the Lego Church Project and other stuff. These challenges are just part of my daily life and stuff that I deal with.

-JM

Fall is a season right?

Last Tuesday evening I had a rather painful impact with the ground. In this case I ended up falling off my bike. This is not the first time this has happened to me. But it is another challenge that I have to face with from time to time. I am rather overweight. In fact that is one of the first things people notice about me when they meet me. Because of my cerebral palsy I already have issues with balance. I am not stable on my feet for the most part. Walking can be a mild challenge when I'm having a bad day. The weight does not help me at all.

For me the risk of falling is every present. Because I have taken so many falls over the years. Depending on what is going on. I have learned how to react and roll my body in such away as to minimize the risk of getting hurt. However the falls that scare me the most are the ones that come so suddenly that I have no time to react. Last Tuesday's fall was one of those. First time in recent memory that I did get hurt to some degree. I am OK. However I am still feeling the effects of it. Thankfully my bones are rather strong due to my weight. The downside is that the soft tissue gets damaged and hurt because all the energy from the fall has to go somewhere.

What matters for me in this case. Nearly a week out is that I am still able to walk and ride the bike. Despite the rather direct hit I took on my left knee/leg. Even though I am always fearful of that nasty fall that could take me out of commission. I have to learn that even if my worse fears come true. I can still ride out the storm. This past week has been a strong indication of that.

I mention a bike was involved in this fall. In this case a good old fashioned single speed pedal bike. Classic beach cruiser style. I've had the bike since at least 2009. It has gotten a lot of use over the years. In fact I often say that I ride my bike better than I walk. Which in most cases is very true. Someone who is over 400lbs is not suppose to be able to go blocks let alone miles on a bike. People get a little pale when I tell them one of my favorite rides is a ten mile round trip.

I close this post out with this: Things are going to happen no matter how much we prepare. Sometimes elements are just out of our control. It is how we chose to ride out the storms in our life that makes all the difference. It is a lesson that I've been reminded of this past week. Boils down to my usual mantra: By the Grace of God I'm still standing.

-JM

Challenges we don't always see

Everyone has a challenge that they are faced with. Most people never get to see these challenges or their impact on the daily lives that we live. Some do not understand, or worse, refuse to understand what it is like to live with these challenges. They see things on the surface. But it is too much trouble for them to look deeper. Instead they dismiss or in many cases out right attack. These of course are the same people who would rather have all programs cut so that no one gets help. The same people who show an out right lack of total compassion or empathy. I have no ill will to these people. Rather than wasting energy on negative emotions I would rather invest that energy in prayer that their hearts would soften and that they would be shown the profound Mercy that the path of Christ offers.

-jm

A Catholic Artist

I consider myself a Catholic artist who uses LEGO as his medium. I use this to promote the message that even if you have a challenge (or disability) that God can still use your talents. Each year as I have for the last seventeen of them. I spend countless hours of my time and energy to create something out of nothing. Taking a blank set of base plates and creating a new parish. Often times in the span of under two months. Which given the size and scope of what I do. Is rather impressive on it's own.

While I use the project to promote disability awareness. Their is also another element to my work. Something that is very subtle. But before I go into what that is. I must first explain something about myself. One element of my disability is that I am at times very hyper. Even as I have gone into adult hood and not far off from middle age. I am still the kind of person who cannot sit still for very long. I have to be in a state of constant motion. So even with that challenge that I face. I still enjoy the Mass. I enjoy the songs. I enjoy the processions. I enjoy the word of God. I enjoy the Communion. For me their is a deep passion for the Mass and it is an important element of my project.

My Lego Church Project is a snapshot of typical parish life. It is my love of the faith transformed though art. I try to capture as much of as I can. As realistically as I am able to given the limits that LEGO sometimes gives me. You see this passion because of all the details. The time I spend working on each section. Lot of that detail is in the tile work. The patterns on the floor and some of the other design elements that make a Church what it is. But building is only part of the story. Along with it are the people that come to the Mass.

One of the many comments I get is my project is always full of people. A sad reminder that our parishes are suffering. People have fallen away or have forgotten how important the Mass is. In the more recent past I have said that the pews are full because that is my hope and my prayer. That people would come back to their spiritual homes. To rejoin their parish communities. But I think this not a fully accurate statement. Because when I look on my work. I realize now more than ever. It is the entire project that is a prayer. A reminder of how important Celebrating the Mass is. That Christ would awaken in us a passion. A passion for our parish communities. But also a passion for life itself.

I close this post out with this final though: When I'm doing one of my displays people who come up to check the project out see the outside of the building. My comment to them is something along the lines of "You need to see the inside to get the rest of the story." As I've been working on this post. I'm starting to realize that their is way more to the story than just the project. That I am a Catholic artist who uses LEGO as his medium. I express my passion and love for my faith though my work. Sharing the messages that comes with it.

-JM

Facing challenges.

We are often faced with challenges that can either become lessons that we learn from. Or they become struggles that seek to destroy us with negativity and doubt. I have found more often than not that just by surrendering these challenges to God we can find an inner peace that allows us to over come them. The road in this life is not meant to be an easy one. But rather a road that we can learn. Giving into the negativity can only reward us with pain and sorrow. Surrendering to God in my opinion does not mean that things will get better. But it will give us the inner strength that we did not even know we had. Gives us wisdom to figure out the best path to go. Even when the road seems most hazardous.

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Bits of Wisdom: Challenges

We are often faced with challenges that can either become lessons that we learn from. Or they become struggles that seek to destroy us with negativity and doubt. I have found more often than not that just by surrendering these challenges to God we can find an inner peace that allows us to over come them. The road in this life is not meant to be an easy one. But rather a road that we can learn. Giving into the negativity can only reward us with pain and sorrow. Surrendering to God in my opinion does not mean that things will get better. but it will give us the inner strength that we did not even know we had. Gives us wisdom to figure out the best path to go. Even when when the road seems most hazardous.

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