Diagnosis
In May of 2016 I was diagnosed with spontaneous (not familial) amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is also known as “Lou Gehrig’s Disease” after the baseball player who died of this disease in 1934.
According to mainstream medicine it is a complex, progressive and ultimately terminal motor neuron disease with an average two-to-five year life expectancy, with no cure or therapy except palliative care. There are “alternative” therapies – some of which I am pursuing – but none of them have been proven to cure ALS. My hope though is that they may reduce or postpone the degenerative symptoms while I prepare myself.
The initial experience of the diagnosis was like having an “out-of-body” experience. I was “present” when the neurological specialist, along with my wife and two daughters, made the diagnosis, but I wasn’t fully “there”. The specialist reviewed the primary neurologist’s Electromyography (EMG) test and diagnosis. She gave her second opinion, “Yes, you have ALS.”. I knew enough about ALS to know it is a pretty dreadful disease leading to death.
My family started crying, but ironically as the neurologist verbalized the diagnosis the words of Elder Sophrony (Sakharov) of Sussex flashed through my mind: “The way of the Christian is crucifixion”. When I first read these words I did not think he was referring to a physical or health-related sort of crucifixion but rather a metaphorical or spiritual one – like subduing the ego, the passions and the flesh.
I have to admit it was a major shock to my family and to me; no one saw this coming. Yes, there were tears, long hugs and looking deeply into my wife’s, daughter’s and grandchildren’s eyes. The prospect of leaving those you love and all you know and have experienced can be a deeply unsettling experience. One of my greatest memories and experiences is being in church with my family, singing and receiving the holy Eucharist. But I decided at the outset of the diagnosis that I would not go through the phases of asking “why”; anger with God; disbelief in God; or losing hope or faith.
The Journey Begins
In the Orthodox spiritual tradition, we are encouraged to be ever-mindful of our mortality, not in a depressed or despondent way of course, but so we can prioritize what is most important, as this life is the entry way to eternal life. But when I heard the diagnosis and in the days that followed I realized that I had been thinking of my mortality in a more theoretical way. I had been kicking the ‘mortality can’ down the road and assumed I’d live to an older age. Now it was right there in front of me and I had to face it.
Initially, however, I found that the Evil One and his minions were tempting me with negative thoughts and images, minor depression, fears and sometimes bad dreams. Psalm 55:4 articulates this well: “My heart was troubled within me, and the fear of death fell upon me. Fear and trembling came upon me, and darkness covered me”.
As a result, I try to pray a lot at my home altar and interiorly (The Jesus Prayer), and ask God to take away the fear and anxiety and to replace these with hope and peace. I find that trying to live in the present moment helps rather than speculating and worrying about the future. As an Abbess said to me, “The present is the only reality; the past and the future are not realities. God is with you in the present moment.” I also start out many mornings praying the Akathist Of Thanksgiving, a beautiful, positive and inspiring prayer that puts me in a very good place spiritually. My spiritual father also gave me some excellent advice. He told me about something the fathers call “arrow prayers”: specific prayers targeted at specific states of mind. He suggested I repeat one from St. Gregory Palamas, when I felt down or fearful (until the darkness goes away): “Lord, illumine my darkness, Lord illumine my darkness, Lord illumine my darkness”.
I also did some research on preparing for death. The first book I reread was Fr John Behr’s “Becoming Human”, a small book filled with wisdom, which I highly recommend to anyone dealing with a terminal illness, or one who wants to prepare in this life for the next. One sentence struck me: “Human death is educational, enabling us to experience the frailty of our nature so we may experience the strength of God, and through this we become a eucharistic gift to and of God”.
Looking Inward
We generally do not appreciate feeling weak and powerless in this life; we tend to think – especially when we are healthy – that we are autonomous; so dealing with our impending death and its subsequent sense of powerlessness, weakness and lack of control can be an entirely new experience and journey, which most of us are not used to.
Another significant book I read is “The Theology of Illness” by Orthodox philosopher Jean-Claude Larchet. It is an amazing book, dealing with patristic perspectives on sickness and how to make one’s suffering spiritually redemptive.
I also contacted two respected Orthodox bioethicists to discuss end-of-life issues and decisions. One of them wrote this: “The most important aspect of care in an advanced illness from an Orthodox Christian point of view is to prepare spiritually for the ultimate healing encounter with Christ at our death”. This made me realize that death is a healing encounter not an end.
Without a sense of meaning and purpose, terminal illness can feel random and lead to hopelessness. Author Jean-Claude Larchet, quoting the patristic fathers, writes of sickness and suffering as a potential means for spiritual progress. He writes: “Illness and its attendant sufferings often make up part of the numerous tribulations through which a person must pass in order to enter the Kingdom of God…[it is] a part of the cross which the person must take up and carry…to follow him on the way to salvation which he has opened for us, to live and receive fully the grace received through baptism, to assimilate oneself truly to him, to suffer and die with him, in order to rise again and live in eternal communion with him.”
So I think we must make this journey with understanding of the Big Picture – our transfiguration and our eternal life – and have trust in God. As St. Paul writes, “And if Christ is not risen, your faith is futile…” (1 Cor. 15:14). If Our Lord did not overcome death, neither will we. But thankfully He did and therefore so will we!
A fine line I have had to walk is whether to believe God will heal me, or to face and prepare for my mortality. I recently visited with a priest from Crete who was in our area of the US and travels the world with a relic of the authentic holy Cross and prays for those suffering with disease. His ministry began when he lost his young daughter to cancer. His presbytera told me that “we do not pray so much for bodily healing, as we pray for God to do what is best for our soul”. In some contemporary Christian circles many associate physical healing, longevity, and even prosperity as Biblical promises, and if you do not experience these there is something wrong with your faith. I do not dismiss the possibility of God healing me. While I am doing everything I can, however – both medically and spiritually – I try to focus on what sickness can teach me about preparing my soul for its journey to eternal life, while remaining open to whatever God’s will is for me.
One of the problems and challenges with illness and pain is, as a saint wrote, “The worst of sickness is that it so often weakens you (so) that you cannot fix your thoughts on God”. But in that state, we can simply offer our illness and pain to God as a way to participate in Our Lord’s redemptive Passion.
A Terminal Illness Changes Everything
Having a terminal diagnosis changes everything in a flash. I now spend more time in prayer. My thoughts are more focused on spiritual things than of this material world. I want internal peace and quiet more than I want to be stimulated, distracted and entertained. I realize a lot of what I have done in my life has essentially been a distraction from what is most important. I appreciate my family, friends, spiritual community and clergy who have rallied around me in support. When I was first diagnosed, a local priest, a friend from a sister parish, came to my home and prayed and anointed me with holy oil and spoke to my wife and me about my impending transfiguration. It was a very encouraging visit. I have also had several priests – including my own – pray and anoint me before holy relics. A local Russian priest (ROCOR) who has a relic of the Great Martyr and Healer St. Panteleimon in his parish prayed the “Akathist to St. Panteleimon” for me and I was able to venerate the Saint’s relic.
I definitely realize now that love is what life is all about, as we are reminded in the holy scriptures – love of God, family, neighbors, strangers, the ill and afflicted and one’s spiritual community. I am a bit more “detached” now than I was before my diagnosis, because if one is “all in” this world, being separated from it (by death) is an even more difficult transition. I think this is what essentially separates laity from monastics: less attachment to this temporal world.
A terminal illness affects not only the patient but family and close friends as well. It is very difficult to watch someone you love suffer – it is not an easy path but it can be a holy one. The fathers tell us that God is very close to the one suffering from illness. My family is doing well and we are facing this together, honestly and without illusion. They are dealing with this with tremendous love, care and concern. I have friends that say my condition has deeply affected them and made them rethink their priorities. I have been blessed with friends who have rallied around me. I am doubly blessed.
As I look back at my youth – I was not raised with any spiritual formation until I was a teenager (and then not Christian) – I spent most of my time enslaved to my passions, which are the distortions of the gifts we are given as created beings. When I was a teenager in the nineteen sixties the so-called fleshly passions were emphasized as what it is to be human. I wish I had been raised as an Orthodox Christian. As an adult I pursued the values we are taught to achieve in our American culture – ambition, comfort, self-fulfillment, material success, career success, pursuit of wealth, etc. I spent a lot of time on the road traveling and building businesses and wish I had spent more valuable time with my wife and family and seriously pursuing God and spiritual transformation. As I look back now, I see less value in most of the so-called “material things” I pursued, because none of it prepares me for the next life. So if I had to do things over again, with what I know now, I would focus more on the life to come than on this temporary life and try to develop more love in my heart. I would also have been kinder, less self-centered, less critical and judgmental had I to do it all over again.
How Do We Prepare for Death?
So what can people do to prepare for their death? Well I’m not an expert, but I would say that those who have longer terminal illnesses can look at this as a blessing from God to prepare themselves. The fathers tell us that sudden death – before one has truly repented – is not a blessing.
What does such spiritual preparation involve? Well I try to see this as a period where I am preparing for what I call “the great adventure”! I have always loved adventures and this is the biggest one I am facing in this life! For me it involves prayer for God to purify my heart and to help me to be ready for the next life. I have also reached out to people I have had misunderstandings with over the years to make reconciliation and I must say the people I have contacted have been wonderfully forgiving. And I try to bear the burden of this diagnosis – and its attendant discomforts – as cheerfully and positively as I can.
I also pray to God ceaselessly to turn my heart into a “love vessel” because as Orthodox Christians we do not believe that the afterlife is merely a place where we are sent or go, but an experiential state of being, and love is most important in preparing us for being in God’s all-holy and loving presence.
As St. Paul wrote (1 Cor. 2:9: “Eye has not seen, nor ear heard, Nor have entered into the heart of man, The things which God has prepared for those who love Him.”
In conclusion, it’s important to find meaning in death and not to look at it merely as an “end” to existence or something that happens randomly, without meaning or purpose. We can use our time of illness as a period of “involuntary asceticism” (according to the fathers), and if we use it appropriately it can be as beneficial as voluntary asceticism for the Christian: where one finds one’s true heart and is not so attached to this temporary world, its many illusions and pretenses, and partakes of a journey where we share in Christ’s suffering, passion and His Transfiguration.
Raspy voice or not, you are still a treasured voice to hear, dear friend.
With love and blessings,
Abbot Tryphon
Dear Kevin,
I want to thank you for your wonderful podcasts which helped me so much when I was traveling the world and often had no church to attend. Your intelligent and sensitive interviews were immeasurably enriching to me.
And thank you for this lovely article about your illness. It will comfort many others and strengthen their faith. May God bless you and keep you in his hand throughout this adventure.
Thank you Kevin for sharing your story with us. My heart goes out to you and Colleen and your family. You are often in my prayers. I found the following quote most inspiring.
“The most important aspect of care in an advanced illness from an Orthodox Christian point of view is to prepare spiritually for the ultimate healing encounter with Christ at our death”. This made me realize that death is a healing encounter not an end.
That is how I desire to live everyday…dying that I might live…as well as when I pass from this earth.
Thank you for teaching me how to die/live.
Blessings & love to you, brother.
Keith
Dear Kevin and family,
Warmest greetings in Christ!
My cousin sent me this link and it is almost identical to the feelings, shock and then journey with Christ with this awful disease.
My father, Damon Gus Tassos, a former Green Bay Packer had ALS and lived so long that the Mayo Clinic couldn’t figure things out! He always told us to pray all day long. He did and not only did he walk me (or I walked him) down the aisle at our wedding in 1974, but he he also got to see his grandchildren grow up and traveled to his family homeland in Argos, Geeece.
I will pray for you each day.
In Christ.
Love,
Cynthia Tassos Phillips
P.S.
I was on the board of the Central Texas ALS group and did advocacy for ALS in DC.
We are still family, touched by a tough disease.
Thank you, Kevin. I am saving this for pastoral use in many ways! Good strength to you, dear brother, and please pray for us as we pray for you daily and at every proskomide.
B
Thank you for your wonderful witness and reminding us about what is truly important.
My dear friend Kevin, An inspirational message spoken as a spiritual being whose heart and life has been transformed by the power of Christ…I have taken the liberty of reproducing these enlightened words and making it a permanent part of my library…we have traveled so much of life’s journey together and I look forward to being as much a part of this journey as your time and inclination permits…..by God’s Grace and with his Blessing on every part of your ministry…Your Friend Always Larry
Kevin, thank you for these thoughtful, helpful, loving & life-giving words. I’m praying daily for you & your family. I love you all.
You have found your voice, Kevin. Thank you for sharing this.
All our love,
Dn. Tom and Wendy
My uncle developed ALS. He managed it gracefully – whether in a fully Orthodox or Stoic manner, I do not know. God bless you and my prayers are with you.
Kevin, Thank you for this and all your faithful service. I will keep you in my prayers.
Cyril
I am so sad to hear of your diagnosis…I have been so blessed by your shows on Ancient Faith Radio during some very difficult times in my life. You are in my prayers…may God bless you and give you strength and courage. Thank you for sharing your personal journey so that we may have the honor of lifting you up in prayer.
Sheree
Thank you so much for your honest witness. I want to save & reread your post frequently. Will be praying for you & your family to remain strong in your faith.
Right on Brother!
The greatest tragedy in life is not that we suffer, but what we miss. John Paul said in one of his encyclical and”suffering releases love”
“Death is the remedy for sin” the door through which we enter eternal life , the “last enemy to be defeated”
“With God all things are possible!” He could, may and I pray heal you, but at the end of the day. They will be done! Jesus I Trust in you! Love and prayers! steve
Kevin,
My friend found late in this life’s circuit, dear Kevin, the Lord recompense you for your good words according to His sweet and enduring mercy!
Remember me also in your prayers as you seek the Face of the Master.
Fr Patrick and Kh Christina,
St Peter the Apostle Church, Pomona, CA
You are giving us all so much, as you have always done!
Great blog post! I am perhaps the only one to say you have been blessed with a struggle that is obviously resulting in a profound spiritual healing. Mortality is a path we all travel upon, and yet, so few are given the insight you have been blessed to receive. Your love is key. It is Christ filling your soul and though the sadness that no doubt consumes a portion of this journey, your focus is redeeming. It is a beautiful sight to behold. Thank you for allowing us to be a part of this journey. May the God of love continue to manifest within you.
Thank you, Kevin for all of your contributions to Ancient Faith Radio and for this profound blog post. Your work has been of great spiritual benefit to me, and I hope God blesses you for your effort. I will keep you and your family in prayer during this difficult time.
Thank you for reaching out your assistance to others who suffer. Your words are true and valuable!
Please contact me via e-mail. I want to share something potentially useful. email hidden; JavaScript is required Camille Stauffer
Thank you for your kind comments.
Dear to Christ, Kevin,
May God strengthen you and your family as you walk this path together with the Lord who trampled down death by death. You will be in our prayers.
Fr. Michael Shanbour
Three Hierarchs
Wenatchee, WA
Hi Kevin, I remember as a young teen on a beach vacation my grandfather beginning to struggle before he was diagnosed with ALS. We watched him over the years struggle and also watched him change into a joyful, sensitive man. His laugh was infectious. My brother asked him one day if he felt alone and he told my brother he found a friend who was always with him. After he departed this world we opened his bible which was marked and under lined highlighting all the promises of God and eternal life and salvation. We latter in life met the same friend he had discovered Jesus Christ who has promised us He would never leave us or forsake us. You know He is with you and will sustain you all the days of your life. Thank you for always being a sane voice of reason in these days of worldly uncertainty. You are in my prayers.
Dear Kevin,
A few years ago we were in contact via email regarding your live call in talk show on AFR. At one point I had mentioned to you the name of Dr. George Demacopolouls being a possible guest on your show. At that time you were not aware of his specific area of Orthodox scholarship (and I suggested him because he happens to be my brother-in-law and the topic regarding Orthodoxy and Catholocism/Pope are some of his areas of expertise.) But, why I am mentioning this is because you wrote me a reply with a most gracious email. And these days when someone takes the time to reply so remarkably kind, it makes a difference. Eventually Dr. Demacopoulos was on your show once or twice. I think I mention this because I know you paid attention to detail, you did the research and you remembered to take the time to be kind. I think that all those personal attributes factor into who you are and my hopes are for those attributes to continue to be with you on this journey. You are always one who seemed to do the homework necessary for bringing Truth to light or Light to what we may think is truth. Your growth as an Orthodox Christian inspires many and will continue to do so. Your post is a strong witness reflecting your inner light as well as your family’s inner strength. The relationship of love is forevermore. Death is conquered by Christ’s death. Job the much suffering teaches us all. Your prayers will be ever more fervent as your adventure continues to follow the divine path of God, and the wisdom of the Holy Fathers and Holy Mothers of our true Orthodox faith. May you be blessed with the quietude your heart seeks in prayerful contemplation and with the Holy Spirit within assisting you to be inspired seeking God’s Will through God’s holy, living and active Word. Remembering others in prayer at some of your most difficult times will provide you with fortitude as you continue to “Press on” as St. Paul tells us. Your voice has gone out to all the world. To God Be The Glory. May all the fruits of the Spirit be yours and may your witness illumine us evermore. The Vivifying Hand of Christ heals, restores and renews in blessings seen and unseen. Keep believing in the unseen gifts God has for you in strength, determination and holiness in angels everywhere. Your guardian angel is with you every step of the way. May this life of preparation always be a journey towards Christ. I thank God for your witness and your words.
In Christ, Presbytera Vangie
Dear Kevin,
I am one of the hundreds, probably thousands, of people who have benefited from your podcasts. Thank you so much for your time and care. I am deeply saddened to think of losing your voice in our lives and the challenge you are facing; however, I am also encouraged and blessed by your words and the hope in Christ that you shared. Bright sorrow? May He continue to guide and uplift you and keep you in the days to come. Thanks be to God for all things.
Kathy Erickson
Well, Kevin I will pray for you. I remember back in 2008 before the beginning of the recession a word from the Lord about how he cares for the lillies of the field by flipping the bible to that passage. Recently, I received disability for my learning disablties and Aspergers.
Dear Kevin,
Thank you for sharing this diagnosis and these thoughts! They are a blessing and an encouragement. You and your family are in my prayers. God bless you and keep you close!
May God be with you, Amen!
Thank you for sharing these thoughts. They will stay with me a long time, I think, as so many of your words have. Glory to God for all things!
Kevin, this is beautiful blog and you are a tremedous example of faith and courage. God is with you. God bless you and your family.
Kevin, this is a beautiful blog and you are such a tremendous example to all of us of faith and courage. God is with you. May God bless you and your family.
Thank you for sharing your journey with us. As a former Mennonite on my way to becoming Orthodox, I deeply appreciate what I’ve encountered in your perspective on suffering, death, and preparing the soul for that final healing. May God be with you and your family.
Our family will pray for you and your family. May you find God’s grace sufficient and His peace beyond all understanding.
Dear Kevin,
I am from Indian Orthodox Church. Ancient Faith radio is a treasure that i had found in 2015 and since then all my car travels are never the same. Yours and Fr. Thomas Hopkos are my best episodes which i keep listening.
You used to bring so many variety of topics from Yoga, Financial Planning to Catholicism and to finer aspects of Orthodoxy. I deeply appreciate the genuineness and sincerity with which you had dealt with all those episodes. Also your research on each of those topics were so exhaustive… The Memorial on Fr. Thomas Hopko has been so touching and I could hardly control my tears.
Thanks once again for writing you heart in the blog. Many like me are blessed because you were generous to give your time and talent. I will be praying for you that our Lord may have mercy on you and may His will be done.
Do continue to pray for the unity of the Church.
Ajjo John
Kevin, you and I corresponded briefly a few years ago through email/LinkedIn and though we have never met in person, I have always felt that I knew you! I want to thank you for your willingness to be “present” in the moment with all of us. I know my meager efforts in this life will never be enough and that I can only trust in Christ’s Mercy when the time comes.
Thanks for your kindness and always being willing to share your struggles and insights with all of us!
Michael Oberbillig
Kevin,
Thanks for all your wonderful work with Ancient Faith Radio, you’ve brought light to many us.
I’ll keep you in my regular prayers.
Kevin tears stream down my face as I read this article. I am a young man, but a hypochondriac. I fear death like no other. I just want you to know how much reading this wounds my soul and how helpful you and all the radio programs you have done on AFR have been for my own spiritual growth. May God bless you as much as this has blessed me! Will be including you in my prayers.
Prepare for the LIGHT!!! I’ll see you in it by and by.
Love,
George Engelhard
Kevin, I agree with you. I have gone through this journey from a carer’s side. I have witnessed the effects of terminal illness on a Christian’s life and his passing to eternal life. As you said, I am of the opinion that terminal illness is a preparation of the soul to face our Lord, giving on the opportunity to do so perhaps in a better state than if one passed suddenly or without a terminal illness. Prayer, especially the Jesus Prayer, and reading the Akathist Hymn to our Panagia are definitely critical in this preparation of the soul, but also help to face and go through the physical pain. These prayers feel your heart with love and forgiveness. They give you hope for what is to come. Pray also with your family, your wife, as these moments will always be memorable to those you leave behind, who with God’s grace will follow you. Important for you and your family to remember is that death is a passing journey, and we will all make it sooner or later. If we prepare ourselves properly, then we will meet each other again, in much better circumstances, this time for eternity. Cherish every moment, every word, every hug, every prayer. Talk to your angel, he may be the one to guide you to the Lord when the time comes. Terminal illness is just a quick way to go to Jesus for the true life. This life is a passage to eternity, and you just got to the door. Opening it is what remains.
May our Lord Jesus Christ and Panagia be always with you to guide your soul in its swift journey to the true life.
May our Lord and Panagia be with your family, to give them strength and prepare them for what is to come, they are helping you to open the door and enter the Kingdom.
Foteini
My Husband reposed eleven years ago. He suffered from bulbar-onset ALS. All I can do is to remember your family as well as you in my prayers. May God have mercy. Laura.
Laura, I have the same. Thanks, Kevin
Kevin, you are an Orthodox Christian champion of the West. May you continue to bless us with your thoughts, experience and words of wisdom for many years yet. Thank you for sharing your very personal story with us. Miracles happen all around us and may you be blessed with the miracle of healing.
Kevin,
As always, whether oral or written, your words are filled with the Light of Christ.
We join your community of faith in prayers for healing of soul and body, according to the Lord’s will. May He grant you and your family peace.
With much love for you, Colleen and your beautiful family,
Steve & Eve
Dear Kevin,
Christ is in our midst!
With tears, you have shared with us death as the ultimate healing encounter with Christ.
Lord Jesus Christ, illumine our darkness.
We love you,
John and Mary Means
Dear Kevin, I’m from India and your podcasts have helped and blessed me in being convinced of Orthodoxy. Thank you for everything you did. May God be with you.
Blessings Simon!
Kevin,
I am saddened to read your news because I know that probably means I will no longer get to hear your voice mediate such edifying interviews. I am also saddened for you and your family and the suffering you all are experiencing. However, I am proud of you all, as fellow Orthodox, for embracing the news so prayerfully. May God strengthen you all in the journey ahead! I also want to say that I have truly, deeply benefitted from your ministry on Ancient Faith Radio. I want to emphasize this because I am sure you often do not know how many lives you have affected from podcasts. Your podcasts gave me the knowledge and determination to leave a schismatic Orthodox group and now I am at Seminary. My family and I will pray for you.
In Christ,
Dear Kevin !
I’m from Slovenia/Europe and was always very happy to listen to your podcasts on AFR, and freuquently had encouraging discoussions about them with my oldest son, who also listened to AFR. Lately we were asking our selves : “Where is Kevin, why no more of his pearls on AFR ?”
Thank you for all your doing brother ! Thank you for this blog article!
Looking forward and a thankfull hug !
Ales
” I am sure that what we are suffering now cannot compare with the glory that will be shown to us.”
I’m sorry to hear about this diagnosis. I would like to share one thing. In a small number of cases, ALS is actually misdiagnosed lyme disease. It often attacks the nervous system and mimics other diseases such as MS, ALS and Parkinson’s. You may find this post from lymedisease.org (formerly California Lyme Disease Association) to be informative on the subject. Leave no stone unturned!
https://www.lymedisease.org/lymepolicywonk-lyme-neurologic-misdiagnosis/
Kevin, may God give you and your His joy, strength and peace! Thank you for all your hard work and generosity in sharing your wisdom with us.
Kevin: I am truly sorry to hear of your news. I will keep you in my thoughts and prayers. Have always enjoyed your radio programs. Thank you for everything you’ve done for AFR and the Orthodox community.
Thank you for sharing your journey Kevin. In the face of terminal diagnosis you have found
courage and strength to bring to light a subject (physical death) which is not often discussed.
This in itself is the sign and miracle of healing from within you that has already begun. I pry you
continue to both physically and spiritually heal witnessing to the love God .
Dn. Laike Misikir
St. Raphael of Brooklyn Orthodox Church
Detroit Michigan
Kevin,
Your AFT and Illumined Heart podcasts have been a tremendous blessing to my wife and I, as we are recent converts to Orthodoxy. Reading this blog post was also a blessing, as I too feel that I need to prepare for my death, whether it’s today or 40 years from now, and find rest in the love of God as I try to bear my cross. I am praying for you and your family.
Kevin,
You don’t know me, nor will you ever know how much you have helped me in my spiritual struggles. There are surely thousands of others who could say the same thing. Thank you.
Bill
I really feel for you and your family and I know that as long as you hide yourself under the protection of God´s love and Christ´s wounded side..where the blood and water came out…this is the fountain of life for you (and me). I have been studying St Isaac the Syrian and Ephrem the Syrian and their writings on God and Christ especially of God´s love. God´s love is like a magnet drawing us closer and closer to Him and the Heavenly Kingdom that now I want to see the face of Christ where the knowledge of God´s glory shines. This year I have had 2 surgeries and it really makes one think of the deeper things of God. Many of the psalms have been quite personal to me when I meditate and personalize them. May His love draw you closer and closer to Him. Blessings
Kevin, even though we never met, we became rather good acquaintances. Like Fr Tryphon, your voice will always be in my head. Thank you.
And I look forward to finally meeting you.
Deb
Lord have mercy on you as you and your family walk this path. As we were journeying to Orthodoxy your podcasts were encouraging. Thank you for your faithfulness.
Kevin, Your podcasts, especially AFT, were so very essential to my Orthodox journey. I’m now a catechumen and have you, in part – a big part, to thank.
I had been wondering where you had gotten to as I kept refreshing my podcast list hoping to see a new episode. Now I know. Thank you for the brilliant and heartfelt article. Once again your contribution to my journey is inestimable.
Oh, Kevin,
I, too, had wondered about you with no postings since February.
This testimony is a blessing to me, as it makes me want to think
more about my “Great Adventure”.
Your numerous podcasts, particularly your interviewing style has
been most helpful to me over the last 3 years as a new covert to Orthodoxy.
Thank you for this posting, and may you continue to find peace and purpose
on your continuing journey.
I thank God for all your wonderful work and what a difference your work made in my life and especially for your words that you have just shared with all of us. May God bless you and all your family as you face the challenges in the coming days – may you be filled with the peace of God that passes all understanding.
Dear Kevin,
I, too, want to offer my heart-felt thanks for the beautiful gifts of research and interviewing that have illumined so many of us! May you find our Lord’s mercies new every morning as you walk this new path! Love & prayers, Blandina
Dear Kevin,
May God keep and strengthen you! And Colleen and the whole family. As difficult as your situation is, you are in such a good spiritual place to endure it properly and to be a good example for the rest of us. Preparation, that constant “mindfulness of death”, should be a part of every Christians life, but we often seek to push it away from our awareness…
One of the most beautiful prayers I wrote down when reading a book about Elder Sophrony was this one, for the moment of death, to be prayed during all the days of our life. I hope you allow me to share it with you and all those praying for you:
“Lord, at the time of my death, when I will be helpless and unable to pray, I beseech You: remember me. Now, while I am able, I want to entreat your help at that time. Be merciful O Lord God and at that dreadful hour, when my strenght shall fail me and I will be no longer able to cry out to Thee, when neither angel nor man can extend a helping hand to me, do Thou come to my aid and grant me the unspeakable joy of my salvation. Amen.”
May God bless and strengthen you and your family on this path. Please email me at my gmail (agatamcc) account, I have an idea of one treatment that you may consider… Much Love, Agata
Kevin, I read your article with interest back in September. I remembered it a month later when, after a visit with a neurologist, I was diagnosed with an undetermined motor-neuron disease of my own. The doctor won’t say it is ALS, but won’t rule it out either. More appointments and tests to come.
With that diagnosis, undetermined though it was, the idea of a soon-coming death crashed into the china-shop of my mind and started making a big mess. Prayer and help from my priest and spiritual father — along with the fact that we just don’t know what’s happening in my body just yet — has driven the thought away…for now.
But the amazing realization that death is a certainty does have a way of re-arranging one’s priorities. And it always has been a certainty. Perhaps the really amazing thing is that we are somehow surprised when we sense that death is walking up the street and stopping at our house.
I’m so sorry to hear that you are facing this. I will keep you in my prayers and, when you can, please remember me as well.
Dave,
You can email me at email hidden; JavaScript is required; I’d like to have your last name so I can pray for you.
Dear Kevin,
I have wanted to respond to your blog post for several months now and I apologize for taking so long to do so.
Thank you very much for your thoughts and insights regarding death and declining health. All of your revelations reminded me of two of my favorite songs that deal with the same subjects. These songs are “I Found Love” and “Vanilla Twilight” from my favorite musician, Adam Young (His band name is Owl City).
In “I Found Love,” the speaker is on his deathbed and vocalizing his thoughts as he is about to pass from this life into the next. In “Vanilla Twilight,” the speaker is someone who has lost a loved one and the song is about how they miss their departed loved one, but still remain hopeful for their future reunion. I have attached links to both songs below. I especially think the music video for “Vanilla Twilight” is beautifully done (albeit not exactly the same subject matter).
Lastly, I wanted to let you know that I also have a degenerative neuromuscular condition called Spinal Muscular Atrophy that I was diagnosed with as a child. It is not quite as severe as your condition, but it has taken away my ability to walk and my muscles continually get weaker as I get older.
After reading this post I am especially touched by your lines, “We generally do not appreciate feeling weak and powerless in this life,” and “While I am doing everything I can, however – both medically and spiritually – I try to focus on what sickness can teach me about preparing my soul for its journey to eternal life, while remaining open to whatever God’s will is for me.” These sentences are very important for me because I can definitely focus far too much on my lackings in terms of physical strength and inability to do basic things like use the toilet on my own. However, I find it is the most difficult thing to see how my health can benefit me, strengthening my relationship with Jesus and my trust in His plan. While I too also hope for a miracle for my condition, I hope to continue my journey with the Lord, my wife, and my spiritual father in learning how I can grow through bearing my cross.
Thank you again for your encouraging words.
https://www.youtube.com/watch?v=FWUwYYuHVJ4
https://www.youtube.com/watch?v=pIz2K3ArrWk
In Christ,
Ariel Diaz-Nanasca (from St. Anthony’s in San Diego)
Dear Ariel,
Thank you for your kind and encouraging email.
Dear Kevin,
Thank you for your post. It has given me a lot of courage and hope as I face my own illness. I have Stage 3 Chronic Kidney Disease. I also have Spinal Stenosis. A double whammy that results in a lot of pain.
“So what can people do to prepare for their death? Well I’m not an expert, but I would say that those who have longer terminal illnesses can look at this as a blessing from God to prepare themselves. The fathers tell us that sudden death – before one has truly repented – is not a blessing.” These few lines are a blessing to me as I try and figure out why God has given me this disease and the pain that goes with it.
Thank you for mentioning the The Akathist of Thanksgiving. I looked it up and it going to become my new prayer. I will pray for you and your family. Please remember me in your prayers.
In Christ,
Tom
Dear Kevin,
I thank God that you have shared such a spiritually rich and wise testimonial. Thank you for encouraging me and others to turn our focus away from worldly distractions, and towards eternal priorities.
God’s peace is present in the tone of your story; the peace that tamps down fear and that anticipates the blessings of life beyond the horizon of this temporary life.
My family and I will lift you up in prayer, as well as your wife and your entire family.
John C.
Hi Kevin! You seem to be taking 2 Corinthians 4:7 to its outermost limits. Thank you for your candor about having ALS and some of the accompanying experiences you are encountering. I have greatly appreciated your insights since becoming Orthodox five years ago.
Do you like to watch movies? Have you ever watched (or read) Babette’s Feast? It includes a profound and lovely message about the way that the physical aspects of life can prepare us for spiritual ones. Here is the trailer. https://www.youtube.com/watch?v=H5w9skKcdnA I think it is on Netflix, if you would like to watch it.
Here is a link to Mozart’s Clarinet Concerto for you when you need enCOURagement. The second movement (12:05 minutes) is especially good: https://www.youtube.com/watch?v=o_gm0NCabPs
I will keep you, your family, and your caregivers in my prayers. Please let me know if there are arrow prayers that I can offer to God on your behalf.
Lisa
God bless you, Kevin. And God bless your family too. I have a non-terminal neurological disorder that has caused me to become disabled, and your words are fill with honesty and hope. I love to listen to your programs; you are a great interviewer. I wish you and your family the consolation of Christ.
Memory eternal, dear brother, and may the light of the Resurrection shine on you! I always enjoyed the time passed listening to your programs on AFR!
Alessandro from Italy
Memory Eternal! With the Saints give rest, O Lord, to the soul of your servant Kevin where there is no pain, nor sorrow, nor suffering, but life everlasting.
Memory eternal!
Our 5-yr-old son has DMD (progressive muscular dystrophy) which is also terminal and the wise words of Kevin deeply resonate with us and are of great value to us! Thank you Kevin! May God have you in His Holy Kingdom to have an eternal Communion with Him!
You will be very much missed! Memory eternal!
Kindest regards from Bulgaria,
Natalie
You gave the best interviews I think I’ve ever seen. This writing is quite inspirational to me and I will store it in my heart. Memory eternal.
Kevin…You have been heroically faithful in your fight with this painful disease.
Thank you dear friend for the opportunity to share life together in our home
parish these many years and the sweet memories more numerous than the stars in the sky with which we have been blessed.
May your Memory be Eternal my Friend………Fr. Wayne Wilson