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.

Rekindling Lost Connections

Social media was something I never thought would help me out with ALS. Boy, was I wrong. About a year ago, I was finally able to manage my diagnosis. It only took about 6 years to accept ALS and move on with the short time that I have left. During that period of my life, I closed my Facebook account. I didn’t realize that I was also closing off my family and friends in the process. I was depressed and giving in to my demon. What a waste of time and I sure hope that I reconnect with everyone that I shut out. For that, I would like to apologize to all of my family, I am sorry.

Recently I decided that it was time to get myself back out there and live out of the shadows. Unfortunately, not everyone has been so understanding. Most of my social media acquaintances have chosen, for whatever reason, to move on and not reconnect with me. This is the result of my decision to disconnect and I am taking responsibility for it. However, my really good friends have chosen to accept me back into their social media lives and for that, I thank you.

As I was reflecting to my ultimate decision to recluse myself, I discovered something that is currently haunting me now. Seven years ago, I was diagnosed with ALS in March of 2010. A short time after, I received a phone call from my younger sister, whom I hadn’t heard from since our mother passed away in 2000. Yes, it had been 10 years without a peep. It wasn’t from lack of effort on my part, I had made several attempts to contact her by phone, email and letters. Yes letters, do you remember sending those? She would not answer my attempts and I assumed that she wanted to be left alone. I was still an active duty Marine stationed in Iwakuni, Japan and still made several attempts to maintain our relationship as siblings. I was so angry and frustrated with her about it, but I kept on forgiving her as I always have.

 

 

“Yes letters, do you remember sending those?”

So, I was very glad to hear from her again and all of the mixed emotions that I had been dealing with my diagnosis and depression added on with the news that she was calling me about. She proceeded to tell me that our biological father was on his death bed and she wanted me to know. At first I thought that I didn’t care about him dying and I know that I reacted very coldly to her about it. She was quite surprised by my reaction, which surprised me, for she knew the path chosen by our father created our current relationship between us. Let me just say that I hadn’t known him well enough to care.

I quickly realized that she did have feelings for our father, so I reassured her that I was going to be there for her. As we proceeded to talk, I let her know about my recent diagnosis and she reacted with tears. I believed that she was genuinely caring about me as I was caring for her. You see, no matter how horrifying that our childhood was we had always stuck together. I believed we were finally back together again, all thanks to our father’s death. I thought this was a little morbid for me to think this way, but whatever the reason, I believed that her and I had a real good shot of putting back together our long lost relationship. The situation was bitter sweet, to say the least.

Over the next few days we frequently spoke over the phone and it really felt good to me. The ALS was temporary on hold, which was just what the doctor ordered if you catch my drift. I believe that there was divine intervention taking place. Then the afternoon came when she called and was in tears. She told me that the doctor said he was very close now and whatever we wanted to say to him to say it now. She asked me to say my goodbyes to the man who I had felt tremendous resentment towards. She put the phone next to his ear. It happened so quickly and the only words that I could muster were “I forgive you”.

Then, he was gone and I hung up the phone and dropped to my knees immersed in tears.

 

 

“It happened so quickly and the only words that I could muster were ‘I forgive you’.”

 
Her tone had changed after his death. I didn’t feel anymore genuine feelings coming from her. I started to feel really dark about us again. The fact remains that she was bluffing and I had been tricked to make some distant relatives feel good about themselves. I hated her for that. You see, our father’s side of the family was corrupted with greed and they would use money to manipulate us when we were kids. They constantly waved their wealth in our faces. They knew that we were suffering and they continued their bullshit instead of helping us. My family from my distant past was very dysfunctional and destructive. I refused to get sucked into it, but my sister had not. When I left Nebraska for the Marines, I failed to recognize that I was saying goodbye to my baby sister, at least the one that I had known.

My sister has never met my wife and our three wonderful sons. We always offered for her to come stay with us to get to know each other, but this would never be. All the fear that I had when we were kids that we would eventually move on from each other had actually manifested itself. The demon that had burrowed itself deep into our family. The one that I thought I had finally escaped from, had managed to continue to infect my own wife and children. My wife and sons don’t understand why my sister would choose to avoid them. My wife thought that it was because she was Japanese and my sons thought that there was something wrong with them. I was so angry with her for this because this was the same treatment that they have received from this side of my bloodline. I always believed that she was better than this. I was so wrong.

Recently, I sent my sister a request to connect on social media, my new tool for battling my depression and ALS. She has accepted but there haven’t been any responses to my messages that I had sent. I continue to have some hope that she and I will have some type of relationship before I succumb to my ALS. I still believe that somewhere out there is my little sister, whom I tried to protect when we were young. I hold on for a chance to have her back in my life. Besides, isn’t that what big brothers are supposed to do?

 

 

The Past

This week I will try and discuss my depression and how I have chosen to treat it. ALS is my life, but it does not get to control my cognitive well-being, unless I allow it to. Let me explain. Depression has been deflating me for most of my 45 years on this earth, long before my ALS diagnosis in 2010. It probably began around four or five years of age. No I don’t remember everything, but I remember the shocking occurrences of my youth.

My birth mother and biological father would be classified as “unfit” by today’s standards. This part of my family history has many facets and intertwining tragedies for both of my parents. This would, of course, be passed down through genetic materials, known simply as DNA. Now add environmental conditioning, systematic physical and mental abuse, throw in neglect, starvation, filthy living conditions and so much more just for good measure and Walla! My home.

At the age of four, I had open heart surgery that saved my life in more ways than one. During my month-long stay in the hospital, the nursing staff recognized the signs of abuse. My siblings and I would never return to our parents after this. I was already demonstrating severe signs of depression. I felt unloved and rejected by my parents. I would was saved by my grandparents. They raised me to be the man that I am today and I am so grateful for that.

Having been working a full-time job since age 12, I was just busy enough to hide from my depression, or so I thought. I began drinking when I was 14. I would pick up the habit from my adult coworkers and they seemed to have accepted me as one of the guys. Finally, I felt the “acceptance” that I was yearning for at a truck stop in Nebraska. I grew up hard but with the life lessons that I was learning, I was able to make it through my school age years in one piece.

Now that you have the foundation upon which I was raised, I shall continue. At age 20, I joined the Marine Corps and was hoping for a better life or a fresh start at least. I loved the Marine Corps and I loved being a member of the Few and the Proud. I now had the tools and the training to bury my depression deep. So deep that no one was aware that I was privately and slowly slipping into that very dark pit, that I know now is “depression”.

Being a Marine and given a license for destructive behavior, my life was going nowhere very quickly. Burning the candle at both ends since age 12, my mind and body couldn’t take much more.

My life would be saved for a third time and I knew it right away. The day that I met my wife, I knew that I had been saved once again. However, my love was not aware of the demon that I had buried deep inside of me.

Thirteen years of military life, a beautiful wife and three beautiful sons later, I was thrown a curve ball. During my annual routine military physical, the doctor found a large mass in the arch of my left foot. It would turn out to be a tumor that couldn’t be removed. This would prove to be the dagger that would kill my Marine Corps career. I was devastated and I once again felt depression creeping up on me.

Photo Courtesy of Gerald Gabernig.

Before I was to be medically discharged, I had several procedures done to slow down the tumor growth. These treatments made me physically weak. I was having trouble passing my physical fitness tests. But I ignored the symptoms because I was afraid to go to see the Doc, since I didn’t want to be forced out for medical reasons.
Which was bound to happen anyway. Marines are stubborn creatures and I refused to give up.

The Marine Corps War Memorial in Arlington, Va. Photo Courtesy of Adrian R. Rowan.

So the Marine Corps dumped my family in the desert. This would be our last duty station. Right into the asshole of the United States of America. It was the final kick in the balls, or so I had thought. The intense heat really took its toll on me physically. I never took off my pack. I kept going to work, school and to the weight room. Ignoring the symptoms. But ALS has a mind of its own and with it comes depression.

One of the last medical issues on the ALS train is depression and for me it’s the most illusive and dangerous trait. You see I already had severe depression and now I had ALS. What I had failed to realize, is that whatever I had been suffering from..so had my family. They were afraid to speak about it themselves. What have I created? I was a ticking time-bomb and if I went off then I would have taken everyone that I love with me. Well, you see I couldn’t have that happen. So I swallowed my pride and I got some help.

First, I had to admit that there was a problem. This still isn’t easy for me to do. Remember I am a Marine and we are super-human. Admitting that we need help means that I am weak and that is simply not in my vocabulary. Are you feeling me? Well the next advice really pissed me off. My doctor recommended that I take medication for my depression.
I wanted to take baby steps and agreed to therapy. Yes, a counselor or a psychologist. I wanted to save me from self-destruction and in turn, save my family.

By this time, I was carrying so much anger and resentment. Yes I was depressed, but I needed to break it all down in order to deal with all this negativity. Remember, I am taking baby steps here. There is no magical cure it will require continuous, hard work for the rest of my life. Which is good because I have so much time to think and that could be dangerous for me. I needed to collect tools for my personal toolbox so I can work through all of my thoughts, emotions and ideas. To constructively work through my depression.

As I was able to make positive changes with my cognitive well-being, I then was able to discover on my own that I was willing to add another tool. I did some research and consulted with all my doctors about taking an SSRI or depression medication. What I discovered is that along with therapy, the medication in small dosage, can make my progress more advanced. I think with more clarity and with better judgment. My thoughts and ideas now have logical and educational substance to back them. I don’t panic as often and I am able to make better decisions with purpose. I can actually sleep at night, stress free and wake-up each day prepared to take on new challenges.

Well, the purpose of this message was to share with you that I am currently in a good place. Yes, I am dying from ALS but I am choosing to die with my boots on. I will not go quietly, nor quickly. I choose to go out just like I came into this world. Kicking and screaming!

 

 

Until next time my friends.