I am blessed...

As the taxi driver was rolling me out of the back of the van, she whispered into my ear, "You're very blessed. Your family really loves you."

"Yes, I know..." I responded.

As we entered the apartment building again and we took the elevator upstairs, and I was lifted back into my comfortable bed, I began to think that I really am so very lucky. The word "BLESSED" is only the beginning of the gratitude that I feel— not just on special days like my birthday, or an anniversary, but every day. It shouldn't take the words from a taxi driver to remind me of this fact, I need to remember to live with gratefulness every moment.

I had a very good birthday— fifty-seven years. I received lots of birthday cards and well wishes – thank you all very much, each and every message meant a lot to me. I received a few lovely new plants, which I always enjoy. My lovely wife got me a couple of African Violets, another friend gave me a beautiful Orchid, and my son's girlfriend gave me a very unique Bromeliad. I was actually quite surprised. Of course, my family treated the day extra special.

Saturday, my family took me to Ala Moana Beach Park— that's when I encountered the friendly and observant taxidriver. It was great to get out of the apartment, and wonderful to see the ocean. The park was crowded with people— lots of family celebrations, barbecue parties, tents, music, games, joggers, yoga, swimmers, sunbathers, paddle boarders, boats, fishing... It was fun for me to observe everything going on. Local people here in Honolulu really like to get outside. It was beautiful. We stayed for just over an hour, which was perfect for me, as I didn't want to get too tired. It was very special to be outside with my small family. I felt very happy and grateful to be alive with loved ones.

I'm doing a very well these days. We have gotten into a routine for my feeding. It takes about sixty minutes for one meal– about 650 calories, three times a day. My body is adjusting to the new nutrition, feel like I am getting stronger every day. It did take a full three weeks to recover from the hospital – that was a terrible four-day experience. I have started to work on my stories/writing again, so that makes me very happy. I have to rest more often, and the words come more slowly, but my imagination still flourishes.

I am blessed.

A love letter to PEG

I've been living with my new PEG (stomach feeding tube) for over three weeks now. The following thoughts come to me freely without censorship or hesitation:

 

Her slender form slips gently into the quarter-inch hole in the left side of my stomach. She joined me with some pain and discomfort at first, but now she rests easily on my belly. We have become inseparable. She is about 12 inches long. One end of her is a simple Lopez valve where water, medicine and liquefied food begin their journey into my system. The other end is some sort of balloon apparatus inside my stomach – I've not seen this part of her, but I feel her contract and expand as the situation dictates.

PEG has changed my life. I now get the nutrition that my body needs without the fear of choking or aspirating. It takes about one hour for her to do her job, a slow drip of 450 mL of formula. We do this dance together three times a day. At first, I thought I would dislike her presence – after all, she replaces the joys of biting, chewing, swallowing, and most of all tasting food. However, as we have gotten to know each other, I admire her efficiency. The nutrients go directly to my system. This is especially true when water is pumped directly through her into my stomach. It's a rush of sudden hydration, similar to taking a long drink of cold water on a hot summer day, but more immediate, more satisfying.

The old process of taking food and drink through the mouth is still possible. I can enjoy ice cream, coffee, and the occasional baked potato, or cheese and crackers, but I now realize that whole "enjoy the eating... the taste and texture ritual" is not all that it's cracked up to be—pleasure that I will surely miss, but not necessary. I can live without it, thanks to PEG.

So, the next time you bite into your gourmet plate lunch, remember to think about the process – the bite, the way your teeth, jaw, saliva and tongue work together. The way the food tastes. The feeling as it goes down to your stomach. Be sure to enjoy that pleasure, the luxury while it lasts.

PEG has given me a new way to look at food and nutrition. I feel the energy coming back to me. She has given me a much needed boost in this struggle with ALS. Thank you PEG!

WARNING the following photo is for mature audiences only. The image may be disturbing to some...

I can do this...

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 PM. 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 okay. 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 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 afterwards. Then usually I take a short nap. I am sleeping more and more, but that's okay – 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.

Home from hospital

It's Thursday, I am home five days from four groovy days of care at the hospital— it has taken this long to get some of my energy back. My level of fatigue is the worst ever. I feel like it will take several weeks to recover.  The surgery went well. My goal to start tube feeding and avoid tracheostomy was successful. It was quite some discussion with the doctors to accomplish. I can still speak, but with difficulties.  I hope my voice and body will get stronger soon. I don't think my body is used to such good nutrition that I get from the formula. I will slowly start to communicate directly in the coming week.  My wife was super wonderful and cares for me every day.  She is so busy….  My son stayed by my side, I'm lucky to have them, good friends and good caregivers.  Thank for your messages, prayers and positive thoughts.