The Lord Works in Mysterious Ways

Folks, there is something special that happened to me recently and I must share it with you. I was recently interviewed by Hannah Mullins, Channel 10 News for the Hope Loves Company camp for children of Persons with ALS. The interview was coordinated by Jodi O’donnell-Ames, who is the founder of HLC. By the way, these are two wonderful and empowering women who have made a wonderful impact in my life. Truly selfless and full of passion for what they do. Thank you for connecting with me and continuing to be a part of the family. By the way, talk about the beauties and the beast, I’m just saying what everyone is thinking…

 

Pictured here from left to right, Benton Ames, Jodi O’donnell-Ames, beast and Hannah Mullins.

 

After the interview was aired on the ABC News, I wasn’t expecting what would transpire from this experience. The following day, I received a miracle from God! My eldest son was working on his car in the garage, when he was approached by a man claiming that he knew me from the Marine Barracks Yokosuka Japan. My son was taken back from the information that this person knew about me. He told my son not to tell me who he was and that he wanted to surprise me, so my wife helped me transfer from my bed to my wheelchair. She led me out to the driveway.

 
The anticipation was exhilarating and once I saw who it was, I recognized him right away. It was Gunnery Sergeant (retired), James Washington. He was my supervisor at my very first duty station. I was always thinking about him and how he was such a positive influence on my Marine Corps career. I mean, this man is one of a kind and true leader of Marines. In other words, he is the real deal folks! I absolutely admired this man of God. I had always wondered what had become of James and here he was standing in our driveway.

 

 

 
James was there when I had met my wife, Chisato and when our first son was born. This was totally surreal my friends. Yes, he has maintained his military physique, unlike myself. I let myself go (ALS). James, you haven’t changed. You are like a fine bottle of wine, you just get better with age. I love you my brother and thank you for finding me.

The Best Medicine

ALS can be hilarious. Allow me to elaborate why I am discussing this topic with you. When I was diagnosed with this horrible disease, all I could see was the negativity it causes. All of the gloomy feelings and emotions that was experienced, just seemed to fuel the depression. Everything seemed hopeless and grey. This is the natural tendency of how people who are diagnosed with ALS feel.

When something of this magnitude happens in an individual’s life, the people surrounding them might not know how to handle it. I was so far down mentally, that I failed to recognize how bad my behavior was affecting the people around me. I lost many of my friends, colleagues and family members when I was diagnosed. This could have been caused by many other reasons, but I decided it was because of ALS. Which in turn, just added to my depression. Do you see the pattern developing here?

 

Everything seemed hopeless and grey. This is the natural tendency of how people who are diagnosed with ALS feel.

We need to realize that ALS is not just about the patient. It includes everyone around them as well. I failed to account for everyone that was a part of my life. I could not understand why so many people were avoiding me. I did not grasp how shocked and sad they were. It may have been easier for them to just avoid me and the situation all together.

Prior to ALS, I was very social. I loved to start conversation with people whom I had never met before. I liked talking with people and learned to communicate from this behavior. Well, to be honest I found it to be entertaining for me. I considered myself to be a people person and enjoyed the company of others.

I realized and soon accepted that I have the responsibility for creating a safe and positive environment for the people around me. Which is very difficult to do, but it is very crucial, especially for those who are closest to you. 

 

 

If I create a friendly and safe environment, I discovered that people could look beyond the disease and see an actual person. It seems to be working since the relationships I have lost have been replaced by new ones.

It all starts with me and how I choose to be. If I can learn to laugh at my disease, then it allows me attract a positive atmosphere rather than gaining negative attention. I also believe that if laughed and smiled more, the people around me would be more comfortable. This opens up quite a few interesting conversations with people, which is what I like.

So what is funny about ALS? For one, the way that ALS effects my body movement. I lack of movement to be precise. The noises that I make when someone is helping me get dressed or when my caregivers are asking me questions while in the midst of chewing a mouthful of food. These can be either saw as sad or funny situations. I choose them to be funny, what about you?

 

Two little girls laughing on a sofa. Photo Courtesy of simpleinsomnia.

Sometimes when my teeth are getting brushed, someone or something makes me laugh and it sprays all over the place. That’s funny. When someone is helping me get dressed, sometimes my finger or toe gets caught in the material by accident and makes me screech. That’s funny. When I catch myself with an itch that I cannot scratch, I don’t realize I am wiggling and squirming while making ridiculous noises. When I picture myself doing this, it is funny. These are simple examples that provide pure entertainment for my wife and kids, in the best way possible.

About a year ago, I had a pilonidal cyst removed about an inch above my anus. Well, it still hasn’t healed yet and there is an opening. So I literally have two buttholes. This opening also bleeds so I have a “man-gina” which is followed by statements of a “man-period” or a “man-cycle.”Boy if nothing else comes from this experience, I sure have a better appreciation for what women have to deal with.

Sometimes I have bathroom accidents and messes are made, my catheter leaks or I burp and/or fart really loud. I sneeze which results in snot hanging out of my nose or on my face. You know, normal, everyday stuff.

 

 

Physical therapy student Ashley Testa ’11, shares a laugh with a Legacy Senior Living resident, where she volunteers. Photo Courtesy of Nazareth College.

 

I started to notice what made my family laugh and why they would laugh. It is not in a sadistic or evil matter, but in a pure comical way. Basically, comic relief. There it is. That’s the words I was looking for. Laughter is the best medicine.

I am already preparing my next material for when my disease progresses further. Besides, if nothing else comes from this, at least I have something to do. Look, I have been preparing myself to accept the residual effects of ALS, so I might as well enjoy my journey. I think this is a much better alternative than being depressed and giving up. Don’t you think? Well, until next time.

The Comeback

Marines from Headquarters & Service Company, 3rd Battalion 3rd Marines, conducting a dawn patrol in Nawa District, Afghanistan. Official Marine Corps photo by Sgt. Mark Fayloga.

Marines from Headquarters & Service Company, 3rd Battalion 3rd Marines, conducting a dawn patrol in Nawa District, Afghanistan. Official Marine Corps photo by Sgt. Mark Fayloga.

 

Hello my friends and welcome back. It has been a while since my last post and I would like to apologize for going MIA. I really didn’t believe that anyone would care to read and share thoughts regarding ALS, but this shouldn’t be a factor. I am going to continue my thoughts and ideas for, if nothing else, my own benefit. And to you reader, thank you for caring.

I would like to take a moment to recognize my son, Cody, for assisting me with the organization and editing of my blog. Thank you for believing in the idea and for encouraging me to express my thoughts and feelings about my life with ALS. I love you so much and I am so grateful to be blessed with you, your brothers and your lovely mother.

I abruptly ended the first post in sort of a cowardly manner and that is not what Marines do. We finish what we start. So without further ado, let’s get started.

Finding serenity at the Del Mar beach.

Finding serenity with family at the Del Mar beach.

 

I recently went to the beach with my family to gain some serenity. I truly love and enjoy the beach. This was the main reason that our family went “all-in” to move from the desert to the beach. The extreme desert heat was dangerously draining my energy. With the symptoms of ALS, the heat was only making matters worse. To put it plainly, I was dying very quickly and needed to move to a more ALS-friendly setting. The beach was always my dream destination and my family wanted to grant me my dying wish. I truly love my family!

A quick side note for the people who aren’t familiar with ALS, if I ever wanted to do something big, I had to do it sooner rather than later. You see, ALS is a death sentence with no chance of parole. This disease has the tendency to work very quickly and without mercy. Many doctors do not realize this, but when they state you have been diagnosed with ALS, they place great fear in the patient and the family. My diagnoses was followed by the statistical fact that ALS patients typically die between 2-4 years. For the record, I am currently on year number 7, with no life threatening symptoms. Screw the statistics! And just live your life.

Ok, back to moving to the beach. This trip contained several sacrifices my family had to make. My wife, at the time was working at the local county library, had to say her goodbyes to her friends and colleagues that she had known for several years. My oldest son was about to begin his senior year in high school. He was not okay with this at all. I am so sorry my son and honestly, I was not okay with it either. Moving to a school on your last year knowing nobody, was not good situation to be in. And again, I am sorry. All three of my sons had to saying goodbye to friends and teachers, whom they have known for most of their childhood years.

 Northeast view of Twentynine Palms, California from Donnell Hill on the south side of town. Public domain image.

Northeast view of Twentynine Palms, California from Donnell Hill on the south side of town. This was where we lived. Photo courtesy of Wikimedia Commons.

 

Before we moved to near the beach, this was home. We built our lives there. Thanks to fate and the Marine Corps, we ended up in the desert. The Military life is rough for families, especially having to move from duty station to duty station every three years. From house to house, having to say goodbye over and over again. This lifestyle was pure hell and we never really felt that we had a place to call our own.

So, we were determined to never rent and we strategically put our house together. We selected our acreage and built our new home in a beautiful spot. It was just simply breathtaking. Having absolute hatred for the desert, we had always thought that we would eventually move out. But for other reasons and dreams. Not because of ALS.

This is where we pick up from my first posting. If you read my first post, you will see what I am talking about. You might even understand where the anger, frustration, sadness and the guilt I feel come from. All of these negative feelings have led to my depression.

If only this Marine was as tough mentally as I was physically. The depression had consumed me to the point that my family didn’t know who I was anymore. I didn’t see the destruction I was causing on my family and to myself. My pride was driving a wedge between reality and falsehood. I was unable to admit that I couldn’t do this alone. I wasn’t able to admit that I needed help.

I was desperate and needed change in my life. I needed some new tools for my toolbox in order to combat depression. So I swallowed my pride and began to seek some form of counseling. I met a very good psychologist through the Veterans Administration. It was very beneficial collaborating with the counselor. Depression is a hard battle to be facing, even without throwing ALS into the mixture.

For the first time in my life I would have to be honest with my feelings, I would have to admit that I am broken. I have to admit that I needed help. I was willing to put in the effort needed to begin healing myself and to repair my relationship with my family. For we will need each other to fight against this demon called ALS.

Counseling has provided me the tools and education needed to utilize them. Along with medication, my ALS support groups and my family, these are very beneficial factors to have at your ringside. I can honestly say that I am in a better place right now.

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Until next time my friends.