My name is Kevin Taylor. I live in Draper, Utah with my sweet wife, Gerrí. We have been married for 41 years. I'm 64 and healthy in every way with one exception. I have Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. I was diagnosed with ALS in May, 2012. It seems like this might be a good way to share my experience with family and friends. I'm calling this blog "Kevin LIVES with ALS" because that is what I intend to do.
Friday, August 22, 2014
Church Talk - August 2014 (It could happen.)
OK - nobody knows better than me that I can't talk. None the less, the Bishop asked me to prepare a talk and he was going to ask my daughter to read it.
Sacrament Meeting - August 17, 2014
The Bishop asked me to prepare a talk that would be delivered by my daughter, Kristin. I have had a fair amount of time to think about this. I have written a piece here and there, intending to bring it all together in the last couple of days. When I was done Friday night, it just didn’t feel right, so I went to bed feeling nervous. Yesterday I remembered that the Bishop told me that he wanted me to use the “I” word, meaning he wants this talk to be about me. So now I felt the pressure to write a talk by an inspirational person who has ALS. That is a heavy responsibility so I cast that off right away and decided I would write a talk by a dork who has ALS.
My experience with this disease has been very interesting to me. I am a very curious person and I want to know as much as I can about what is going on. Three years ago this fall, I started to slur my speech and my muscles started twitching all over my body. Everyone has muscle twitches but this was over the top. My google search brought up a list of conditions which show those symptoms. ALS was on the top of the list. I put the list together so I could be better informed for my first visit to the neurologist. One disease that is on the list is a form of Schizophrenia. I knew I didn’t have that one because the voices in my head told me so. So visiting the doctor was a confirmation of my list and they prescribed some tests to narrow the list by ruling stuff out. I flunked all of the tests so they sent me to the ALS doctors at the University of Utah. After doing some more tests they confirmed that I had ALS.
As diseases go, this one is very interesting. It is a motor neuron disease. The motor nerves die so the muscles they control don't know what to do. The muscles slowly shrink, weaken and become paralyzed. No one knows for sure what causes it. There is no cure. Everyone who gets it has a different experience so no one can tell you what is going to happen next. The only thing that medical professionals can predict is that it is a terminal disease unless your name is Stephen Hawking. If you ask the doctors how much time you have left, they have no clue except to say that the average prognosis is between two and five years from when it is diagnosed. I started having symptoms almost three years ago and it has been over two and a half years since I was officially diagnosed. So, I suppose, to add a little drama to this meeting, I could kick the bucket right here and now. All in favor please manifest it by raising your hand. All opposed by the same sign.
As I face my own mortality, I have had a fair amount of time to think deep thoughts. I would like to share some of the important things that have been on my mind.
LIVE YOUR LIFE
Don't just exist. This mortal state that we are now experiencing is finite and precious. Don't spend your life thinking about what might have been.
At the phone company, I had a guy working for me. Dave was a nice guy but a mediocre employee. He got the job done but he seldom exceeded his objectives. He did whatever it took to meet them while showing little interest in going the extra mile. In his personal life, he married when he was older, and while single, lived with his parents so he could save and invest his money. When he worked for me he had a young family. As his supervisor I had the opportunity to speak with him about his goals. I learned that he had a very specific goal outside of the phone company. He put every dime that didn't have to be used for absolute necessities, into real estate for student housing in Utah valley. He had committed himself to reach a specific net worth by a certain age. He would lecture me about the money I spent on family vacations or trips to Hawaii with my wife. He spoke of opportunity costs and how the dollars I spent on vacations were gone forever.
One day he came into my office and told me that he had met his goal. I said "congratulations! Are you going to retire early?" He said that he wouldn't retire but now he would focus on his work at the phone company. He said that I would see a difference. He was right. He became a star on our team. In his personal life, he bought a new van for his family and took them to Disneyland. He bought a folding camping trailer and went camping and fishing with his family as often as he could. He was finally living.
Several months later we had another of our routine, one on one meetings. He sat down and told me about his latest camping trip. He told me that he was on track to make 150% of his objective. He then explained that the reason he was missing days in the office was that he had been ill. He went to his Doctor who after some tests referred him to an oncologist. He told me that he had been diagnosed with Pancreatic Cancer and that he had less than 6 months to live.
Over the next few months we visited in the office and then in his home. He had many regrets about how he didn't spend enough time with his young family making memories. The last time I saw him before he died, he spoke about opportunity cost, not in terms of missed financial opportunity, but in terms of missed opportunities with his young family. He knew that he was leaving his family financially secure, but he worried about whether or not his kids, especially the youngest ones would have any memories of him.
I'm not saying that everyone should forget about financial responsibility. Our leaders have taught us that we should avoid debt and be prepared for hard times. But, if you sacrifice family and personal experiences, and focus on building assets, whatever they may be, you should prepare now for experiencing regret when your days are spent.
Make the choices today that will result in the least amount of regret years later.
KNOW WHO YOU ARE
Stop searching for yourself. What could be more boring than that. Jesus taught that the only way to find your life is to lose it. It is much more fun and interesting to serve others. As we do, we will realize that we like the person that we become.
The words, "remember who you are and what you stand for," have become so common and cliche, we can forget how important those words are. We are children of our mortal parents. They gave us a name. It is important to us, and to our parents, what we do to honor or dishonor the name they gave us. The older I get, the more I look like my Dad. Nothing makes me feel more proud as when someone tells me that I look like my Dad. He and my mom taught all of us about the important things in life, both temporally and spiritually. We all knew that my parents loved each other and still do. Their example has stuck with all of my brothers and sisters.
GRATITUDE
Be grateful for everything that the Lord blesses you with. I have come to realize that becoming sick has given me a way to learn things that I wouldn’t have learned otherwise. So I have reason to be grateful even for ALS.
The Doctrine and Covenants says that nothing will kindle His wrath more than failing to acknowledge His hand in all things. I would like to switch this around like this. Nothing will please the Lord like acknowledging His hand in all things and being grateful for all that surrounds us. All we have to do is open our eyes to see how he has blessed us.
Our Heavenly Father loves us beyond our ability to comprehend. He loves us so much that he sent his son to suffer and die for us. That means that every dumb mistake I’ve made and sins that I have committed have been suffered by Jesus Christ. At this point in my life, where I can see an end, I feel extremely grateful to Jesus who knows what it is like to have ALS. All that he asks of me is that I lay all my stuff at his feet and trust him enough to be grateful and to bear it well.
CHERISH YOUR FAMILY
One of the blessings I have received through this illness is that Gerri' doesn't trust me to be home alone by myself. I have a tendency to fall and bonk my head. One time, not that long ago, I fell and hit my head hard enough that I have no memory of the fall or of anything that happened over the next three days. So, if she has to be somewhere, or if she needs to get away and take a much needed and deserved break, she gets a baby sitter.
Our four kids have been great to come over and spend a few hours when they are needed. This has given me some cherished opportunities to speak with each of the kids separately about spiritual things and their beliefs. Not all of my kids have taken the path that we hoped they would. We all think free agency is great, except when it comes to our own kids. We have four adult children. We wanted them to make the choices we had planned for them, and when they made different choices, it was not easy. Any discussion about spirituality and religion made things uncomfortable for them and us. I love our kids very much and I respect their choices even if I don't always agree. This illness has removed the barriers. The time I have had with them lately has allowed us to open up and talk about spiritual matters.
They have presented some interesting challenges to Gerri' and me. In that regard, we are no different than any other parents. They are really good people. They are kind and generous and ever concerned about the welfare of others, especially the people who need it most including those around us that are picked on or ignored, or different in a way that brings about unjust treatment.
I ask you, my four children to always remember what you have been taught at home and at church. If you remember and align your lives accordingly you will be blessed beyond measure. You will prosper and grow personally. You will become the person you have hoped to be.
As I said earlier I have been blessed to have the privilege of having time to sort through my own feelings and to get my affairs in order. I have a pretty good understanding of the most likely course my life will take. While my retirement plans didn't include dying young, I feel ready to take whatever Heavenly Father has planned for me. Am I afraid of dying? No, at least no more than the American philosopher, Woody Allen who said, and I quote, "I am not afraid to die, I just don't want to be there when it happens." (close quote)
As I have thought about how I have spent my life, it is not difficult to think of missed opportunities or things that I should not have done or things I should have done better. But for the most part, I feel satisfied and blessed with the way my life has gone. The smartest thing I have done in my life is marry Gerri'. The last 41 years have been amazing. She is my wife and my best friend. People talk about having ups and downs in their marriage. We have experienced ups and downs in our lives, but not in our marriage. I love that girl.
I would like to express my gratitude to every member of this ward. We have received so much love and support. From the cards that show up regularly expressing love and encouragement to ward members taking on my yard. Our Relief Society President, Collette and now Mary Lou have been wonderfully thoughtful and generous. The ward has been amazing. The Bishop and the Stake Presidency has blessed our home many many times.
I would like to bear my testimony that God lives, he answers our prayers. The restored Church and the Gospel it teaches have brought me joy my entire life. I am excited to see what comes next.
When my Mom was dying, I asked her what the first thing was that she wanted to do when she got to the other side. Her answer was, “I want to hug my mommy.” I too want to hug my mommy, and I look forward that day.
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Dear Uncle Kevin,
ReplyDeleteThank you for this beautiful talk. I feel as if I was sitting in your ward for sacrament meeting. I love you. You have always been and will always continue to be a great example to me and my family! I think your disease is beyond horrible and I hate it so much. But I am so happy that you are so willing to share what it is like living with ALS. You are brave & I know it is totally hard to do this with a good attitude and still manage to include some funny stuff. (close quote)
<3 we love you & Aunt BB!!! <3 and your 4 really fantastic kids!!! <3
Kevin,
DeleteDean has used this talk for is Gospel Essentials class He's Ward Mission Leader and read the post, lost the text of it and we've been trying to recover the text from the BLOG
Success at last and it's printed for him to use for posterity. What a talk, what a guy! You have influenced so many for good reminding us all what is important at the moment..
The moment is so important. Working towards Exaltation is this estate's goal, but exchanging the enjoyment of this wonderful life solely for goals of Eternity wastes the very experiences and beauty that was our Heavenly Father's gift to us..
If it is true that 'Men are So That They May Have Joy', squandering the beauty and joy of today cheats ourselves and those around us of the gifts of this life and the understanding of our Heavenly Fathers true nature.
If we are to be as he is, we need to understand and appreciate world around us that he has created for our joy.
If we are to be Gods ourselves we will have to understand the beauty of the physical world as well as the spiritual world.
Your talk reminded us to LIVE in the beauty of the present while we prepared for the Eternal.
I regret the years of distance. Of the conversations we never had; but this is what you referred, we should Maximize the time that remains.
you have brought joy to so many. your marriage has been the model of loving closeness. You have made my baby sister so happy and yours is the model of enduring love in a marriage.
Your children love and admire you, those with whom you came into contact professionally, deeply admire you.
Your Mother-in-Law even leads your Fan Club! lol !!
Dean and I want you to know our deep love and respect. We will be here for you and your family in every way necessary.
Love,
Sue and Dean
Great Talk by a Great Man. We love you guys so much. Mike & Shan
ReplyDeleteLoved your words and loved the humor! It's so great to be reminded about the joy in life. I so admire how you keep such a positive energy. ��Rock and I send our love to you guys!
ReplyDeleteWe enjoyed your talk and you still have your sense of humor. We pray for you and your family daily!
ReplyDeleteLove,
Jess & Virginia
What a wonderful talk and words of excellent inspiration. We loved the advice as we continue to deal with serious illness on our end. Thank you! Love Matt & Noriko
ReplyDeleteI want to hug mommy too! I love you, Your Sis Linda
ReplyDeleteDear Kevin and Gerri,
ReplyDeleteThank you so much for sharing that amazing talk! It touched me to the core ...i had to stop a few times to compose myself! You are such an inspiration and I am so sad you have this dumb disease!
I have always loved and admired you both for who you are and the "love story"you share!
You have such a wonderful family and I was lucky enough to get to babysit those cute kids while you went on one of those awesome vacations! Years ago!
I'm sure at one point you had to wonder "geez, how's that teenager going to turn out"? :-) Well 30+years later, happily married with Grandchild#6 coming in November! Time is flying by! Just want you to know Of my love for you both! God bless you and your family! Hugs, Kris Stephenson Praag
Kevin and Gerri, thank you for sharing your talk with us. What type of treatments are your receiving now and how are they working for you? Have you tried acupuncture and medical nutrition? If you are interested in medical nutrition, then I have a recorded webinar I can send you. Please e-mail me at Megumi.Morford@gmail.com if you are interested. Best wishes with everything!
ReplyDeleteKevin
ReplyDeleteI have read so many posts to you and they almost bring tears to my eyes but then as you say often that you are not unhappy then I think of the great times we had together. We lost Kent McDonald and thought of losing you really pains me. I love your family very much and I know our friendship does not end with this life.
Love to a very dear friend!
Jess Peterson
Last night, I was lying awake in Iowa thinking of things and it crossed my mind that I hadn't heard from you in a while. And I see that you have passed on from this world -- a week ago.
ReplyDeleteThank you for sharing these experiences. We're all sentenced to some form of death -- your example of grace, dignity, and --although you may not have used the term: courage-- goes beyond inspirational.
All the best things to your family and those lucky enough to have been your friends and acquaintances. You: a true gentleman.
You are amazing. I am just a random person googling. I live in California and ironically, work for a telecom (phone) company. I've never been or seen anywhere outside the US. Life is passing me by as I trot in the rat race. Your words were the swift kick I needed. Thank you for sharing your story. It's wonderful to read what beautiful life you've lead, full of happiness, family and love. Not everyone finds their "person" and is able to start a family. You are truly blessed.
ReplyDeleteSending you love and light as you move through what is ahead.
:-'( oh no, I just read the last comment that he passed a week ago. So so sad.... Truly touched by this blog I discovered today.
ReplyDeleteWith love and light,
Danielle
San Diego, CA
I MISSED THIS BACK IN AUGUST BUT GERRI THANKS FOR SHARING IT. IT TRULY IS A WONDERFUL TESTAMENT OF HIS DEDICATION TO GOD AND HIS FAMILY HIS WORDS ARE SO TRUE.. I AM SURE HE HAS HAD A BLAST WITH HIS MOM.
ReplyDeleteGeri, I met Kevin through his work in the Inner City Mission. He referred a number of students to the LDS Business College and I was able to help some of them. He was one of those people who really make an impression for good when you meet them. I only recently learned of his illness and death. Just wanted to say I'm glad for the opportunity of knowing and associating with such a caring and courageous gentlemen. Hope you find comfort in the memories you share.
ReplyDeleteAs a sign of gratitude for how my husband was saved from the dreaded ALS, i decided to reach out to those still suffering from this.
ReplyDeleteMy husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he had difficulty swallowing, all his joints were dead and that made him immobile to mention but a few. we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and he left the contact of the doctor who had the cure in 2015. I never imagined ALS has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in three months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on josephalberteo@gmail.com on how to get the medication. Thanks for reading my story.
I Am jessica, I want to quickly write on a Powerful herbal cure doctor, who is well known around the world for his cures and help to humanity, This man helped me when i had the Lou Gehrig’s Disease ( ALS ). i and my family tried all possible best some few years back to get a cure for my dying husband who was also an ALS victim, but all our efforts came to nothing on a Friday night when we lost him to death. The same virus came on me some 3 months after the death of my husband, i tried all i could untill i came in contact with DR Camala in 14-6-2014. I went to collect my weekly treatment on the hospital which Dr Camala was invited to inspect some patients, i was upportuned to be inspected by him on his own free will. After the inspection, he gave me his Emails:( dr.camalahivaidscure@yahoo.com ) and his mobile number and ask my eldest son to help me get to him which we really did. We emailed him and he got back to us, in just 3 days of negotiations he sent me some herbal cure medicine and instructed me on how to take them. i remember taken the medicine for just 2 weeks, then i started receiving results. I am happy to say now that for the pass 1 year i have had no symptoms of the sickness and i have been totally and finally cured of ALS with no trace of the virus in my body ( laboratory scan and medical doctors checkup has reveled so) Am so happy and i want to thank Dr Camala for his help on me. i want whoever that is also with this virus to get the quickest and most assured cure immediately through the help of Dr.Camala on
ReplyDeletedr.camalahivaidscure@yahoo.com or call him +2349055637784.
I am Matthias lang, from Orlando u s a, i suffered from schizophrenia
ReplyDeletefor 28 years, i lived in pain with the knowledge that i wasn't going to ever be like every normal human, i contacted so many doctors on this issue,and i have use so many western drugs prescribe by various doctors and all was no avail, because i was determined to get my life back, one day i was researching for this on internet and i saw a post about devansh herbal health care who cure different manners of diseases,including schizophrenia, I contacted him via email: devanshherbalheathcare@gmail.com and made purchase of the schizophrenia herb, i received the herb through USPS within 24 hours, when i received the herb i applied it as prescribed, and to god be the glory i was totally cured of schizophrenia within 1 months of usages,my dear brothers and sisters You do not have to suffer more just contact him for his medicine on devanshherbalheathcare@gmail.com.com he will definitely put an end to that problem of yours
As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
ReplyDeleteMy husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.
I am Karen from Canada, I once suffered from a terrible and Chronic ALS,for more than 23 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had muscle weakness and difficulty speaking ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 23 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs kate on how her husband was been cured from als through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by dr williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help
ReplyDeleteI am bold enough among many others to state that there is now a potent cure to this sickness but many are unaware of it. I discovered that I was infected with the virus 3 months ago, after a medical check-up. My doctor told me and I was shocked, confused and felt like my world has crumbled. I was dying slowly due to the announcement of my medical practitioner but he assured me that I could leave a normal life if I took my medications (as there was no medically known cure to Herpes). I went from churches to churches but soon found that my case needed urgent attention as I was growing lean due to fear of dying anytime soon. In a bid to look for a lasting solution to my predicament, I sought for solutions from the herbal world. I went online and searched for every powerful trado-medical practitioner that I could severe, cos I heard that the African Herbs had a cure to the Herpes syndrome. It was after a little time searching the web that I came across one Dr Itua(A powerful African Herbal Doctor), who offered to help me at a monetary fee. I had to comply as this was my final bus-stop to receiving a perfect healing. My last resolve was to take my life by myself, should this plan fail. At last it worked out well. He gave me some steps to follow and I meticulously carried out all his instructions. Last month, to be precise, I went back to the hospital to conduct another test and to my amazement, the results showed that negative,Dr Itua Can As Well Cure The Following Desease…Cancer,Hiv,Herpes, Hepatitis B,Liver Inflammatory,Diabetis,Fribroid,,Non Hodgkin Lymphoma,Skin Cancer,Uterine Cancer,Prostate Cancer Dercum,Infertility,fibromyalgia,Get Your Ex Back,Als,SYPHILLIS,Genetic disease,Epilepsy, Parkinson's disease..You can free yourself of this Herpes virus by consulting this great African Herbal Doctor via this e-mail: drituaherbalcenter@gmail.com or call and whatsapp him on +2348149277967 He will help you and his herb medication is sure. he has the cure on all disease .You can talk to me on INSTAGRAM..tashamoore219....
ReplyDeleteIrrespective of receiving daily oral or future injectable depot therapies, these require health care visits for medication and monitoring of safety and response. If patients are treated early enough, before a lot of immune system damage has occurred, life expectancy is close to normal, as long as they remain on successful treatment. However, when patients stop therapy, virus rebounds to high levels in most patients, sometimes associated with severe illness because i have gone through this and even an increased risk of death. The aim of “cure”is ongoing but i still do believe my government made millions of ARV drugs instead of finding a cure. for ongoing therapy and monitoring. ARV alone cannot cure HIV as among the cells that are infected are very long-living CD4 memory cells and possibly other cells that act as long-term reservoirs. HIV can hide in these cells without being detected by the body’s immune system. Therefore even when ART completely blocks subsequent rounds of infection of cells, reservoirs that have been infected before therapy initiation persist and from these reservoirs HIV rebounds if therapy is stopped. “Cure” could either mean an eradication cure, which means to completely rid the body of reservoir virus or a functional HIV cure, where HIV may remain in reservoir cells but rebound to high levels is prevented after therapy interruption.Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Lung Cancer,Breast Cancer,psoriasis,Colo-Rectal Cancer,Blood Cancer,Prostate Cancer,siva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Scoliosis,Brain Tumor,Fibromyalgia,Fluoroquinolone Toxicity
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