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.
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.
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?