My son was slouched in the chair next to my bed.
My wife was on the floor, her head bowed, hair covering her face.
It was about 10 p.m. We were all exhausted. I had finally stopped gagging, spitting and choking. My breathing was starting to return to normal. I had gotten home from four grueling days at the hospital that afternoon.
Earlier that evening, my first tube feeding had not gone well. I was overly fatigued from four days of nurses and doctors, and my PEG surgery. Phlegm had built up in my throat, the food went in okay, but it wanted to come up prematurely. The pungent smell of curry from the next-door neighbors' kitchen didn't help the situation. I started to aspirate. There was little that we could do. I didn't want to go back to the hospital. After struggling with ALS for eight years, I felt like finally just giving up.
However, my wife and son didn't give up on me. They did everything they could to keep me comfortable. They held my head while I spit. They stroked my back while I gagged. They told me that they loved me — that I would be OK. They were patient, loving and caring as they always have been. They suffered with me. They share the same disease.
I looked at them in the soft glow of my night lamp.
I realized that is because of them that I am still alive. I realized that the bond we have has never been stronger, the love never brighter. I was grateful. I was amazed at their endurance, loyalty, patience and sacrifice. I prayed that God would reward them for me. I promised to do as much as I could to make their lives more joyful. I vowed to smile more often. I swore to remember to express my gratitude daily. I decided to stay alive for them, and for myself. I will continue to battle ALS for all of us.
It's now almost two weeks later, two weeks since my surgery. It really has been a very slow recovery. I don't think that we realized how weak I was before going to the hospital. I had not been getting enough food or water. It's a good thing that we decided on the surgery at the correct time.
I am definitely feeling better every day. My body is getting used to the new diet, I don't feel so hungry as before. My energy is returning. My spirits are more positive. My wife has done a super, wonderful job. She has really become my 24-hour-a-day nurse. I get fed three times a day. It takes about one hour, by drip directly to my stomach. I always feel comfortably full afterward. Then usually, I take a short nap. I am sleeping more and more, but that's OK — I enjoy napping.
My breathing is doing okay, except when I try to talk or try to work on the computer — then I quickly become exhausted and out of breath. I hope this will improve. The consequence is that I don't get to work on my writing very much, just 30 or so minutes per day, when for the last five years I've been able to work on my writing three or four hours per day. This is frustrating for me, but it's just another challenge, another adjustment to be made. My imagination is as fertile as ever, there are characters and stories still fighting to come out on to the page.
I can do this. I just have to make sure that I use each moment wisely. I have to live in the present with love and gratitude surrounding me.
The blog was posted originally on July 12, 2014.
About the Author
My name is Richard K. Raker, and I am 54 years old. I have lived in Honolulu, Hawaii, with my wife and son for 26 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was totally bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of writing.
First, I struggled through a memoir about the first 25 years of my life, telling the story of the events leading up to my decision to move to Japan. It felt good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew I had. The memoir, A Remarkable Life, Lived by an Ordinary Person, has been self-published using Createspace.com and is available on Amazon.com. After that, I realized that I had a few more stories that I needed to write. I enjoy writing. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It is fun and gives me a much-needed purpose in life, but I do hope that you will enjoy reading what I have written. Thank you all for your love and support. Be sure to visit my blog called A View from Rick's Window, Web page, DVD reviews and Facebook page.