Locked-in, but connected...

Today, a Facebook friend, someone I have physically never met, posted a video of her taking the ALS Ice Bucket Challenge. She dedicated the cold plunge to me and her mother, who had struggled with the disease. Watching the video brought a smile to my face and a surge to my heart. I felt the ice water flowing over me, but it wasn't cold, it wasn't uncomfortable – it felt good. I felt alive. I felt connected to this friend, to this person that I have never met, but that took the time out of her busy life to do this for me and for the other souls living with ALS. Thank you, Karen Klaus.

https://www.facebook.com/karen.klaus.16/posts/10203985094403984

This experience, viewed through the screen of my laptop, made me realize that even though I cannot travel freely from my hospital bed, in my small but comfortable room, I can still connect with the world. I am lucky to be alive during this time, the 21^st century, with computers, Internet, social media, email, technology – sitting here, with just my computer, headset and speech recognition software (Dragon), there is so much I can do. There are countless ways for me to connect with others – to learn, to share, to feel alive and participate in society. It really is amazing.

Two weeks ago, another Facebook friend, Shy Tuna, and his brother stopped by my apartment to visit. Again, we had never met. But, Shy, suffers from ALS and he was here on vacation, so we arranged for a quick visit. It was wonderful to meet – To make the personal, physical connection, with someone I had only known through my computer screen. It made the fact that we can truly connect with people through the Internet come alive. It was a great visit. We both agreed that there is a special empathic bond between people that have ALS, or other tragic diseases... 21^st century technology is just a tool to facilitate the bond, the connection. It overwhelms me to think about all of the people who have reached out, who have given their words, thoughts, prayers and precious time to make my day brighter. Thank you, Shy Tuna, for helping me realize that fact.

https://www.facebook.com/#!/shy.tuna.7

Most of you know that I have written several books and publish them on Amazon.com. There's another wonderful example of how 21^st-century technology has allowed me to connect with the world, to be productive, and to make some limited contributions to the human experience. It completely thrills me to think that someone I've never met is able to read and enjoy the story that I have written.

http://www.amazon.com/R.-K.-Raker/e/B00501DBDM/ref=sr_ntt_srch_lnk_1?qid=1408494086&sr=8-1

What's even more interesting, is that I have met another aspiring author, Karen Watson, living far away in Montana through the online Gotham Writers Workshop – and we have started to collaborate on a novel together. We're both very interested in the Native American experience, so when Karen suggested we try to write a book about the tragedy of the US government sponsored Indian Boarding Schools, I was ready and willing. We do all of our writing collaboration through email. It's a long process, but I believe we will have a wonderful book to share when it is completed.

Here, I communicate with all of you through this blog and through Facebook. Just how amazing, fantastic, wonderful this really is... It's hard to believe. It's easy to accept and just move on – take this gift of technology for granted. You might do so, because you can stand up and walk out the door. You can still go outside and feel the sunshine, smell the green grass. You can walk up to a stranger, say hello and shake hands, or even give a good friend a great big hug – please do these things. Make full use of your physicality, make full use of the technology available to us – be grateful for these things.

Scarlett's Fire – coming soon!

This is the artwork does I will probably use for the cover of "Scarlett's Fire". Thanks so much to my friend Bradley for the lovely work... "Scarlett's Fire" is a science fiction story, about a gigantic Kraken from the planet Corydon that is rescued by a Red and White Banded Cleaner Shrimp, named Scarlett. Scarlett works for the Intergalactic Zoological Preservation Society. Their mission is to save species throughout the universe that are under the threat of extinction. Scarlett and the Corydonian giant begin a very unique friendship while they are traveling to the Corydonian's new world. They have much to learn from each other.

Seeking a good literary agent

Dear prospective literary agent,

I have ALS, but that's not the reason you should read this inquiry or consider taking me on as one of your authors. However, it is the overwhelming force has shaped my life and my writing for the last eight years. It's where I have to start if we are to develop a mutually satisfying and beneficial relationship.

Before I was diagnosed with ALS, I defined myself as a teacher, corporate trainer, father, husband, son and friend. Within two years, I was bedridden and dependent upon a ventilator. Completely paralyzed from the neck down, I struggled to keep myself busy, to fight off depression. I began writing using speech recognition software.

I wrote the obligatory memoir and then a fantasy novel, Dolphins Dance, describing my vision of the end of my life and my reincarnation as a dolphin. I self published both books. I thought they were decent, and the encouragement I received from friends and family spurred me to continue. Writing, 4 to 5 hours every day, became my therapy. I began to realize that even though I was physically confined my imagination was limitless. Telling stories gives me an escape route from the locked-in reality I face every day. Through writing, I still travel the universe and meet interesting situations and characters that entertain me. Now, ALS does not define me— I've begun to call myself an author.

Since 2011, using Amazon's Kindle Direct Publishing and Createspace, I have self-published six novels, a novella, a short story, a memoir, and three volumes of a story that I will eventually combine into a novel.

Why the rush? You might be asking. I really can't explain why I've been so prolific, except to say that being productive, and taking my imagination from ideas in my head to printed words on the page has been immensely satisfying. I've allowed myself the freedom to write without worrying about the business of publishing. The explosion of self-publishing tools and technology over the last several years has given me the platform to see my creations become a reality.

This is the first inquiry letter I have written—Why now?

I believe that my writing has evolved to the point where it can be successfully shared with a broader audience. The financial reality associated with living with a terminal illness has forced me into considering alternative sources of supplemental income. I am ready to slow down, to accept constructive criticism, to revise and rewrite.

I realize that this is probably not your usual inquiry letter. Perhaps that's a good thing, but I would like to sincerely say that if you find my writing engaging and worthy of consideration, I am ready for guidance and a fruitful partnership.

Sincerely,

RK Raker

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.