The View From Where I'm Standing

Have you ever been to a psychic for a reading of your future? I've been once or twice when I was in my 20's. If you haven't, you've at least seen those movies where a witch looks into a crystal ball and can see the future.

From where I was standing, Warren was my crystal ball.

When Warren was first diagnosed with ALS, I had no idea what it was. I knew it had to be bad because everyone was in panic mode but I had no idea what was really about to happen to him and his family.

I remember the first time I noticed something "wrong" with Warren. We were attending his 40th birthday party and his speech was at times difficult to understand. It was slurred and it took a while for his sentences to end. My sister had warned me ahead of time but until you experience it, you have no idea. That was the day I realized that this WAS a big deal.

As time passed, I began learning more and more about this disease from my sister and from Lisa Beth, my sister-in-law. What they were telling me was horrible but at the time, it didn't hit me in the gut. I couldn't see it every day so I had no idea what it looked like...therefore I didn't truly get the magnitude of what this disease is capable of.

As the disease progressed, I'd receive updates from my sister who spent a lot of time with Lisa Beth's family. I watched as my sister-in-law slowly began to change. Her once bright smile was no longer present. She was losing weight quickly and her eyes were heavy, as if she hadn't slept in years. Her grief was beginning to physically manifest itself and no matter how hard she tried, she couldn't hide her sorrow. She was never really "with us" when she was with us. Her mind was always with her brother.

It was during this time that my father was also diagnosed with ALS. I was with him at the doctor's office when it happened. Talk about a hit to the gut. Now the disease that I had seen slowly eating away at Warren's body had also entered my father's body...and here's where the view from where I was standing changed.

Each time I heard something regarding Warren's status, I immediately thought of my father. Each time something broke down on Warren, it showed me what my father's future was going to look like. When I saw Warren and saw the deterioration, it broke my heart not only for his family but for my own as well because this was around the corner for us. When these thoughts entered my head, I'd feel horribly guilty that my thoughts were more on my father than they were with Warren. I still feel bad about that.

From where I was standing, Lisa Beth was my own future. The toll the disease took on her was what I had to look forward to. The weight loss, the lack of joy, the fake smile and the sad eyes...it was all coming at me like a train that has lost its breaks. It was like looking into a crystal ball and seeing your future...and then panicking at what you saw.

I didn't see Warren often during the last year because I gave birth to my second child and his colic was out of control. Leaving the house was not an option for us and mentally, I was spent. The few times I did see him, I would be warned ahead of time by my sister on what to expect...but you're never really prepared for that. The ugliness of the disease cannot be described by words. What it does to the human body is gut-wrenching. Unless you see it first hand, you just can't understand.

The way I looked at Warren's deterioration is different than let's say his friends. While they are grieving the slow decline of a great man and friend, I'm grieving that as well as for my sister-in-law and also for my father. Each time I saw Warren's body, it was like his head popped off and my father's head was there in its place. It was frightening for me.

 I think at some level, I distanced myself from seeing him at the end and I feel like s##t for actually saying that out loud...but there...I said it. I think in my mind, if I didn't see it with my own eyes, maybe it wouldn't become real for us. The reality of the disease was too much for me to take.

At the very end, I left the baby with my husband and made a trip out to see Warren and mainly show support for Lisa Beth, Sheri, Warren Sr. and Marietta. Once again, my sister had warned me about what I was going to see but nothing could prepare me for what my eyes were about to witness.

It was raining heavily that day and there had been a rash of storms the night before. When I pulled up to the house, it was dark and gloomy outside. The inside of the house was dark as well. There was no laughter to be heard. No music or TV until you actually got into Warren's room. When you entered the door of the home, you were hit in the face with sadness. It was all around you...you couldn't escape it.

I had to wait a few minutes to go back and see him because he was enduring one of his horrific breathing episodes where he's basically unable to breath at all. Once the panic had settled, my brother walked me back.

It was everything I could do to not cry when I entered his doorway. The man who was once so handsome and full of life was literally an empty shell of a body...but his soul was still trapped inside. He had his bi-pap on and his breaths were beginning to slow a bit after what he had just went through. The sheet that covered him looked as if it were covering a skeleton's body...because basically, that's all that ALS had left.

I gave Sheri and Lisa Beth a hug and Sheri's sister offered me a seat and asked me to hold his hand. Holding back the tears, I sat down and took Warren's boney hand in mine. It was cold...just a thin layer of flesh covering bones. I watched the rise and fall of his chest and in my mind wondered how long the human body could go on like this.

They had music playing in the background and the TV was on but the volume was turned down. They played Warren's favorite music for him and he was surrounded by pictures of his family. The grief in the room was suffocating. Their heartbreak was contagious...you couldn't escape it.
I cried the whole way home that day...and that's about a 45 minute drive. I'm not talking little tears running down my cheeks either. I'm talking about CRYING...like the kind where you can't breathe  and snot is running down your face. Oprah called it the "Ugly Crying." ( I can't believe I just quoted Oprah because I never watched that show...but the one I did obviously was meant for me to see)

I cried not only because of Warren, but I selfishly cried because somewhere in the near future, I was going to see my father in this state and I wasn't sure that I could handle it. Realistically, my father's body will not hold on as long as Warren's did because of his age...but the deterioration will still happen. It continues to happen every minute of every day. I think perhaps the mental loss of independence and dignity is equally as bad as what the body endures...at least that's how I'm seeing it from where I'm standing.

Sometimes not knowing what the future holds is a good thing. No more psychics for me!

Seeing what's to come is more scary than living it on the fly...at least from where I'm standing it is.