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 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 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.

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.

Diagnosis : ALS

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Grand Island, Nebraska is where I grew up. Photo courtesy of Wikimedia Commons

Hello. My name is Chris and I have ALS. I was thinking about starting a blog to help me put together thoughts about anything that might help you and I get through the day. This message may not reach you, but I will send it anyway. First, let me begin by saying hello and welcome to my blog. I was wondering if anyone would like to share any thoughts, suggestions, feelings or whatever. I would like to have a safe environment for us to share what ever we feel.

I was diagnosed with ALS in 2010. Needless to say that was the worst news that a doctor had ever told me. First, I wasn’t sure what ALS was so I asked. After he explained it to me, then I thought surely he was joking. I instantly was filled with anger and that has not changed for me… Having said that, I would like to try and explain the worst day of my life. I don’t know if this is even possible, but here goes. I was thirty-eight years old with a family. A beautiful wife and three wonderful sons.

We had a life filled with school, sports, hunting, fishing, a mortgage, car payments, credit card debt, and two full-time jobs. I was just finishing my MBA and interviewing for serious, life-changing jobs. We were making big plans for our future. I was was so excited about “finally” making all of my promises to my family come true. Thirteen years of military service and five years of college classes later, I was given a freaking death sentence. People often ask me what does ALS feel like? Well, physically it feels like getting kicked in the groin over and over again.

Psychologically, it feels like everything is getting or will become torn away from you. I will stop here for now. I get very tired typing with my eyes. So until next time.