Joy Carols Spiritual Blog

It’s hard to believe that another year has gone by – and so quickly. I hope all of you people reading this blog are doing well and that life is meaningful and inspirational. As life progresses forward, it seems that friends and family are more important to me than ever.

For me, 2023 has been a very special year. My health continues to be going well, so I am able to be involved in numerous activities at Penney Farms as well as in the Jacksonville area. I am happy to find creative ways of being in a world that isn’t all over the globe or isn’t in my beloved New York City.

And of course, I will always have deep gratitude for Mayo Clinic (which has saved my life). The doctors, nurses, and staff there keep me healthy, alive, and full of energy. Mayo has published a number of stories (Joy Carol Mayo Clinic) and recorded a video about my life living with paraneoplastic syndrome (YouTube – Joy Carol Mayo Clinic health). Mayo in Minnesota is in the process of making a new series of videos about this crazy and very complicated diagnosis – hopefully those videos will be out in the spring or summer of 2024.

This past summer and fall, I had the joy of traveling a bit. Not always easy with my disability. But I made it to New York, Maryland, England, and California to see family and friends. I even took a road trip with friends through Georgia, South and North Carolina, and Virginia. I feel grateful for the ability and opportunity to travel.

As most of you know, my big project this past year was writing the book Different Together: Bridges of Mutual Respect. It’s a book filled with positive, inspiring stories about interactions and relationships between people of diverse cultural backgrounds, experiences, and faiths. A number of people have said that during these times of divisions and discord, the heartwarming accounts in the book help build understanding and respect for all peoples. (Different Together is available on Amazon: Paperback $7, and E-book $5)

Thank you for your support and good thoughts as I continue to try to live my life fully in spite of the challenges I face. Yes, pain and loss can sometimes bring out the best in us. I hope you will plan to come to Florida to visit, if possible – it is beautiful here in the winter. Let us care deeply for one another and be peacemakers in our world. Thank you for being in my life.

Joy Carol

www.joycarol.com

One of my greatest joys this past year was having the opportunity to work with my friend Kyle Reese, the Director of OneJax, Inc., a nonprofit organization in Jacksonville, Florida, that seeks to promote diversity as a foundation for a strong inclusive community. One.Jax is dedicated to achieving understanding, civility, and respect for all peoples.

Kyle and I collaborated together this year with OneJax and have written a beautiful book: Different Together: Bridges of Mutual Respect. This powerful book is filled with positive and inspiring stories about interactions and relationships between people of diverse cultural backgrounds, experiences, and faiths. The heartwarming accounts will help the reader build understanding and respect for all peoples, even among people who may feel or be different from one another. The stories in Different Together will help all of us to understand that differences can be welcomed and celebrated.

This special book – which speaks so strongly to us during these difficult days – has been published and is available for $7.00 on Amazon. Feel free to contact me if you have questions. I hope you will have the opportunity to read the book. Eventually, we hope to have it also as an E-book for Kindle.

Thank you for your ongoing support and positive thoughts as I continue to live life fully in spite of the challenges I face. As many people have said, pain and loss can sometimes bring out the best in us. 

May we care deeply for one another and bring peace to our world. Thank you for being a part of my life.

–Joy Carol

www.joycarol.com

I never imagined I’d become the poster girl for paraneoplastic syndrome, but since it is such a rare condition, and rarer still to live with it as long as I have, I’ve become somewhat notable in the world of rare conditions. Last October I posted an article from Mayo Clinic on my blog, and now I am the subject of a “patient spotlight” article from Mayo Clinic Laboratories. It’s a wonderful article, informative and interesting. I can’t believe that it’s been 9 years since my diagnosis. I am forever grateful to Mayo for doggedly testing and researching until they identified my issue and for sticking by me to keep me going.

A tenacious fighter, Joy Carol never lost hope that a mysterious condition that had stripped her of her ability to move would be identified. Hope turned into reality when a Mayo Clinic Laboratories test identified the cause of her illness and opened the door to successful treatment.

Read the whole article from Mayo Clinic Laboratories here

It’s been another amazing year. Who knew that COVID-19 would stay with us, take new turns, and keep us constantly surprised? We are dismayed by the number of people who have been sick and who have died in the US and around the world. Yet, we will continue to hope that the COVID-19 pandemic will end – some day. It certainly has altered the way we think and live.  

Although 2021 has been a difficult year, it has also been growth producing and significant for me. I continue to be involved here at Penney Farms in the community and in the church on the campus. I lead the Social Concerns Ministry and preach here and in other locations (virtually) around the country. I am on several teams here and in other locations trying to help folks find creative ways of being in the world. My newest undertaking is working to ensure that disabled people are treated with dignity and respect as fully functioning people. Recently I’ve made speeches and preached sermons related to how people need to respond to people with disabilities – of all types. A big but exciting challenge. 

One of my greatest joys this year was when Mayo Clinic (my life saver) decided to feature the story of my life living with paraneoplastic syndrome. They published a number of stories and recorded a special four-minute professional video. You can watch the video at https://youtu.be/lB3sV3wJCKo.  I think you will enjoy it.   

Last year I published my book Nine Lives of Joy: The Journey of a Life. The book was a joy to write, and I’m delighted it received wonderful reviews. The paperback is $6.95 and the Kindle version $5.00 on Amazon. I am so pleased that Nebraska Wesleyan, General Theological Seminary of the Episcopal Church, the University of Maryland, and the Ford Foundation have published articles related to the book and to my work. What a privilege for me.  

I still work with a number of spiritual companions around the country and write this occasional blog, which keeps my hand in writing and helps me be more observant about what’s going on in life. 

I actually traveled a bit this summer and fall to Nebraska, New York, and California to see family and friends. I had not seen my beloved family in California for almost 2 years. We had a glorious time staying in a beautiful house on the ocean front near San Diego. No housekeeping, no cooking, just enjoying one another. And, of course, I continue to “travel” to Mayo Clinic frequently. Mayo has done a magnificent job of keeping me alive and well, and I am enormously grateful for my health care providers. 

Thank you for your support and good thoughts as I continue to try to live life fully in spite of the challenges I face. Yes, pain and loss at times can bring out the best in us. Please plan to visit me, if possible – it is beautiful here in the winter.  

May we care deeply for one another and bring peace to our world. Thank you for being a part of my life. I send you peace, hope, and love.    

–Joy Carol

www.joycarol.com

Recently I enjoyed a week-long trip to Nebraska, my home state. I took a stroll down Memory Lane, visiting the farm where I was born, and my old farmhouse where I grew up, preaching in my church in Clatonia where my grandparents, parents, and I were baptized and confirmed, and re-connecting with lots of friends and cousins. It was an amazing, healing experience. 

And then I had the privilege of returning to my beloved Wesleyan University which has been so good to me – where I earned an honorary doctorate of humanitarian letters, was the outstanding alum, served on the Board, and more.

While there, Wesleyan interviewed me about living fully and meaningfully into my life – no matter what I faced including my being disabled. They will use the video for education and inspiration for students, faculty, and alumni and might also use it for fundraising. It was a delight to make this YouTube video. I hope you will enjoy it also. 

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Independence Day ought to be commemorated as the Day of Deliverance
by solemn Acts of Devotion to God Almighty. – John Adams

This year we are especially mindful of how many people have suffered through the past devastating months. The Covid-19 Pandemic has touched every corner of the world, and there has been much pain and sorrow everywhere. And we hear the devastating news of people trying to leave their homelands, where parents fear for their children’s lives. We know there are thousands and thousands of people in refugee camps who are trying to flee from torture and killings in their countries all over the world. What does freedom and independence mean for them? I remember how un-free and un-independent I felt over the years when I was forced to stay in hospitals, rehab centers, nursing homes, and in my own home fighting for my life. I know there are thousands of people who are in that kind of situation. 

For many of us here in the United States, the 4^th of July is a fun holiday celebrated with gatherings of family and friends, cookouts, parades with flags waving, and fireworks. We rarely think about it as a day when we remember and honor the courageous founders of our country who signed the Declaration of Independence in 1776. Do we consider the actual impact of this day on our lives? And do we think about what the words independence and freedom mean to us? 

Yes, when we are fortunate to have freedom and independence, we might be guilty of taking that for granted. Each year around the 4^th of July, I try to ponder the significance of Independence Day and its meaning for my life. I find it helpful to remember the words written by John Adams, one of the founders of our country. Adams wrote these very moving and poignant words to his wife Abigail on July 3, 1776. I believe his words might help us put the true meaning of Independence Day into perspective. (This is the exact text from his letter.) “The Second Day of July 1776, will be the most memorable Epocha in the History of America. I am apt to believe that it will be celebrated, by succeeding Generations, as the great anniversary Festival. It ought to be commemorated as the Day of Deliverance by solemn Acts of Devotion to God Almighty.” (The Book of Abigail and John: Selected Letters of the Adams Family, 1762-84) 

Those words speak volumes to us. Perhaps as John Adams stated, we should remember Independence Day as a “Day of Deliverance” and celebrate it with solemn acts of devotion to God. We have so much to be grateful for, so many freedoms, so many choices, so many blessings. Life is truly abundant, if we choose to be open to it. May we celebrate and honor our liberation, our freedom, our blessings through gratitude and prayer. 

* How do you celebrate Independence Day? And what about in the future? 

* What are some of your blessings and freedoms that you are grateful for? 

Beloved Creator, we thank you for creating us as your children in this amazing world. Thank you so much for the gifts of freedom, of liberty, of life. May we not take them for granted. May we celebrate our “independence” and our “freedom” with solemn acts of devotion to You, our God Almighty. Amen. 

Joy Carol
www.joycarol.com

Life is a daring adventure, or nothing at all. – Helen Keller

Several months ago, I wrote about embarking upon an unexpected life journey – that I was faced with the rare, usually fatal Paraneoplastic Syndrome. I wrote that I was challenged – as a disabled person. However, I knew that I was more than a diagnosis. I am a person who has chosen to live life to the fullest in spite of my hardships.

Since then, my new life has started up and taken off. It’s like beginning a whole new chapter. As time has passed, I have taken a look at my old ways of living and discovered that I had become accustomed to doing things in certain way because it was easier and secure – rather than stimulating and inspirational. I believe I was becoming too comfortable, and I didn’t even realize that my life had become somewhat stagnant and sluggish. 

Now with my disability, I have had an opportunity to take stock, to do an assessment of what my life is all about, to begin to understand where I have blocked out opportunities because of concerns or fears of the unknown. I started asking myself questions: What was really valuable to me? What were my weaknesses and losses as well as my strengths and passions? Was I open to experiencing a new life? Was I willing to unlock my heart and mind to see fresh ways of serving and living?

By looking at new possibilities amazing doors have been unlocked for me. Now I’ve made some exciting and significant changes in my life. Over the last months I have written, been interviewed, spoken, and preached (usually virtually) around the country about what it means to be disabled, how disabled people are poorly treated, how they should be regarded, and how a person can prepare for the possibility of being disabled. I include here some links to several articles and talks that I have given should you want to see them. Of course, I would enjoy hearing your comments. Thank you. 

YouTube link: preaching at Madison Avenue Baptist Church, NYC

Despair Interrupted by Hope – Madison Avenue Baptist Church (mabcnyc.org)

Article in University of Maryland Newsletter

https://alumni.umd.edu/news/terp-insights-using-lessons-maryland-meet-life’s-challenges?fbclid=IwAR24m0f4yYx0Ykd0mGETSD0U68HFLUr5ohMI34tr1ade-WMU3-5R7116fo8

YouTube link to interview at Unitarian Universalist Church, Washington, DC

Link to Article I wrote for Ford Foundation Newsletter 

http://www.laffsociety.org/docs/LAFF_WINTER-2021-members.pdf

Article I wrote in Nebraska Wesleyan magazine. Click on blue “View Issue” button, go to page 6.

https://www.nebrwesleyan.edu/alumni/archways-magazine

Yes, unexpected events can be a time to start anew, to discover fresh vitality and energy in our being. 

* Have you thought about your life and how you want to live it in the future?

* Are you ready to crack open your heart and mind in order to live your life fully and abundantly? 

Giver of new life, help us to start afresh. Make us open to life-giving words. Crack open our hearts and wrap us up in new skins. May we be ready to honor new learnings. Amen.

Joy Carol

www.joycarol.com

Sometimes it is by going down into the abyss that we recover the treasures of life. – Joseph Campbell 

My life has been a deeply meaningful and exciting adventure. I have traveled to the most remote and difficult regions of the world for my work with humanitarian agencies, and I wouldn’t have changed a moment of it. I grasped on to life’s opportunities and tackled challenges with courage and enthusiasm.  

More recently, I have embarked upon a different journey – one that I never expected to travel. I am faced with a personal health issue: the rare, usually fatal Paraneoplastic Syndrome. I am challenged – as a disabled person. However, I know I’m more than a diagnosis. I’m a person who chooses to live life to the fullest in spite of my hardships. As Helen Keller once said, “Life is a daring adventure, or nothing at all.” 

I confess, that before I became disabled and met people whom I experienced as having a disability, I pitied them. At times I felt guilty, because although I knew people with special needs, I went out of my way to avoid them. I felt uncomfortable, because I didn’t know how to respond appropriately to them.  

I clearly remember the horrible grief I felt when the doctor told me the diagnosis: Paraneoplastic Syndrome – an incurable and usually fatal syndrome that would leave me disabled. I was in shock, devastated. In those few uttered words, everything I thought I knew about myself, how I viewed the world and my future, were forever altered. I was overwhelmed with despair.   

When we are unable to function well, we might see little purpose in living and feel sorry for ourselves. If we aren’t living what we think of as a productive life, we may ask: “Why has this happened?” “What did I do to deserve this?”  

Regrettably, as we get older, disabilities have a way of creeping up on us, preventing us from doing things we did earlier. Even if we are “able-bodied” now, a disability will likely be a part of our lives at some point.  

Most of us hope we won’t be disabled. Research shows when people are asked what they fear most:  loss of health and debilitating disabilities rank high on their list. Unanticipated disabilities can easily make us hostages of anger, self-pity, and depression. Initially, I was in denial about the losses I experienced. However, I couldn’t walk, care for myself, drive a car, work, travel, or live in my home. It was a humiliating and painful process.  

Soon, I learned firsthand that people with any kind of disability are often discriminated against, stigmatized, and shunned – a hard lesson to learn when you are disabled. I’ve felt people try to avoid me, or flood me with extreme helpfulness to the extent that I truly felt helpless, and I have been hurt by their unintentionally disrespectful words.  

All people, regardless of their physical or their mental ability, deserve respect. We must view disabled people as people who have the right and capability of fully engaging in life. And we must not prejudge or treat them as though something is wrong with them. 

The difficulties of being disabled are daunting. However, we can choose to change that picture. It’s not easy when facing anguish and despair. Nevertheless, even in terrible times, we may discover surprising gifts buried somewhere in our lives: compassion, the desire to serve, wisdom, courage, hope.  

From my own experience, I learned that growth can actually come from being disabled. I was surprised that my disability helped me learn what I am made of. I was forced to face my fears and losses, discover my strengths and capabilities, and appreciate people’s kindness and help. I began to pay attention to what was important in my life. Without a doubt, my disability taught me to be grateful for the gift of life. Remember: We might not be able to be cured or healed, yet we can choose how we respond to our challenges, no matter how difficult they are.  

Yes, the Paraneoplastic Syndrome has limited my ability to walk. Still, I have learned what my skills and strengths are. Somehow, hope has interrupted my despair. So, I shall try to live fully into my new life. I am not a diagnosis. I am a woman who has much to contribute to the world. 

* Do you know someone with a disability to whom you could do something kind and loving? What might that be? 

* Has someone reached out to you when you were feeling badly and helped you? What did they do? 

God, help us to treat all persons with respect and compassion. May we never judge disabled people as though something is wrong with them. Help us to remember they are people who have the right and capability to fully engage in life. Amen. 

Joy Carol

www.joycarol.com

Advent is truly a remarkable time of the year – especially this year during the time of the Pandemic. Advent may mean much more to us now than what we often experienced during the Christmas rushes of the past – before Covid-19.  Advent is a season of waiting, expecting, and preparing for the celebration of a profound truth – that God loved us so much that God gave us the special gift of Jesus. That thought may give us new hope, however faint, during these difficult times. Jesus showed us a way to live, and he “ruled” with truth, justice, and righteousness. Knowing this, we can have faith that it may be possible to have more peace and justice in our world. 

Also, we know that Advent is a gentle, quieting gift on our frenetic journey of life. During this season of waiting and preparing, Advent can help us affirm that God is and will continue to be present in our world today. That affirmation reminds us that as God’s people, we are called to be faithful stewards of what is entrusted to us. We have a responsibility to care for God’s world, to love the Lord our God with all our heart, and to love all our neighbors as ourselves. 

As we hope for a better world, perhaps we will remember that we too contribute to the problems of the world. If we realize our own responsibility for what we have done to the world, we will want to become more devoted and committed to making the world a better place as we wait and anticipate the coming of the light.  

In his ‘Psalm of an Advent Ear’, Edward Hays wrote: Quiet me within, clothe my body in peacefulness, that your Word once again may take flesh – this time, within me. 

Yes, let us open ourselves to the gift of Advent. 

* Do you think you contribute to the problems of the world? If so, how?

* How can you prepare yourself for this Season of Advent? 

God, thank you for sending your son to earth to show us a better way to live. Forgive us for our greediness, our judgmentalism, and our rigidity. Awaken our hearts in this Advent Season and quiet us to learn to be still, so we can hear your voice. May your Word take residence within us. Amen. 

Joy Carol

www.joycarol.com