Changes in Our Lives

When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back – Paulo Coelho

change-roadsignThey say that there are two things in life that people are afraid of. The first one is of death and dying – well that makes sense, no explanation needed. The second greatest fear is that of “change.”  We may say we embrace change; change is fun, exciting, stimulating, gets our motor running. But if truth be told, we are terrified of it! Things will be different and we don’t know what shape they will take. Perhaps we want to keep things just the way they are and not change them – even when things aren’t necessarily good or healthy, we may feel more comfortable not changing them.  That old adage…better the devil you know…comes to mind.

Life is filled with many surprises, possibilities, and an almost never-ending list of opportunities for growth – if only we can permit ourselves to be open to them. It is possible to pursue a meaningful and productive life all the days of our lives, but we may have to learn how to welcome in, and adjust to life’s changes.

Change isn’t easy, but neither is living, or dying. We struggle against the inevitable, and we suffer because of it. We must strive to find another way to look at the process of being born, growing old, changing, and even dying. It helps if we believe that each one of us carries within, an inherent quality which is unique, unchangeable, beautiful, and constant; a pure essence that aging, illness and major challenges cannot alter.

Along with the feeling of powerlessness that many people experience as they face change in their lives, can also come a loss of meaning. We may think that as our familiar and comfortable roles as workers, parents, consumers, or lovers change, that we cease to matter. Such painful feelings can deprive us of joy and lead us to seeing ourselves as burdensome and obsolete.

All spiritual practices encourage people to identify the things that frighten them and learn to draw their fears close. To face change in a conscious way, fearlessness is an essential ingredient. It involves the willingness to tell the truth to ourselves and others, and to confront what is in our minds. Rather than turning away from our fear, we can regard it with eyes wide open and allow it to rise up and pass in its own time. Perhaps then we can begin to take back our power.

Many of us have been trained to view ourselves as what we do to make a living. Certainly our careers and vocations have helped to structure our days and make us feel needed and valued. Therefore, we may be afraid that we will be useless if and when those roles have reached an end, even if relinquished willingly. Losing a job or retiring can be a great source of fear for us. We will lose our power and our position in the world and fade into oblivion. There are so many ways to remain vital and relevant if we look past the fear and allow ourselves to explore the options. We may discover that those fears were founded on misconceptions and are far worse than reality.

For many of us, our apprehension over what the future holds is synonymous with our fear of change. Change is nearly always viewed as a threat since the ego is only comfortable with what it can control. But being open can help to relieve the anxiety we might feel about change, for the soul is not subject to change in the same way the ego is. Perhaps we can learn to approach change with curiosity rather than dread and to be more comfortable with not knowing.

I know my life has changed a great deal and may change even more. I don’t know the outcome of my illness yet but I still live with hope, and do my best to embrace each new change as it comes.

For now I am out of the hospital and out of rehab centers. I am back in my own lovely apartment and am blessed with wonderful Filipino 24/7 caregivers. I have only two more chemo treatments and have been lucky to go through them quite easily not even losing any of my hair. And one of the world’s greatest doctors regarding this illness, Dr. Posner, has joined our amazing team of healers and is working with my awesome neurologist Dr. Rebecca Fisher.  So I am very optimistic and feeling so hopeful that GOOD CHANGES are about to happen. So yes, change is in the air for me and it feels great.

* What are some of the changes in your own life that cause you fear?

* Can you take a look at these changes and see them as opportunities for you?

Beloved God, you changed the world so many times but especially when you sent your son to this earth to help us see new and different changes – new ways to live and die.  Help us to learn to be open and less afraid of the changes that come in our lives. Help us to rely on you to guide us through those changes. Amen.

Posted in Musings on Life | 17 Comments

Acceptance

“For after all, the best thing one can do when it is raining is let it rain.” 
― Henry Wadsworth Longfellow

acceptanceIt’s hard to believe that it’s already the middle of January and time for another blog post.  So many of you wonderful people have been asking how I am doing, how I am coping with so much loss, disappointment and pain.   At times I wonder myself how I’m coping and there are times when I fall apart. But on the whole I believe it has a lot to do with a word I am coming to terms with gradually:  acceptance.  I have had loads of time to think about that word, and I’d like to share what it has come to mean to me.

I have discovered that first of all, acceptance is being open to receiving love, care and respect from people who want to reflect back the love they have received from you when it was needed. To accept means that one doesn’t always have to be The Giver and that it’s really okay and important to be the receiver at times. In fact it’s a gift to offer someone their chance to be the giver and allow yourself to simply receive with grace.

I’ve also learned that acceptance is realizing that not everything were dream or hope for will necessarily come true. Sometimes we will be disappointed. Sometimes we will suffer. Sometimes we will not be able to follow our dreams.  It may be that things we just took for granted we would always be able to do are suddenly unavailable to us.

Acceptance may also require a willingness to understand that some of the people we thought we could really count on just can’t be there for us for whatever reasons. However, as one of life’s great ironies, there are those who we least expected we could count on who become a constant presence and comfort to us.

Perhaps most importantly for me as I continue to explore acceptance, is coming to terms with the fact that what I hoped for, like regaining my full ability to walk, to swim, hike and climb hills might not be possible for me again. I may need to readjust my expectations and maybe the real hope should be that this crazy Paraneoplastic Syndrome just won’t get worse and take over more of my central nervous system’s ability to function. I’m trying to take it in bite size pieces and learn to accept each day one by one. I’m so blessed because there have been great doctors and nurses in the hospital I’ve been in who take such loving care of me and are helping me to work on healing.

I hope that all of you as you read this can learn to accept the things that come into your life – surprises both good and bad, the challenges and joys, the difficulties and the gifts.  They are all part of our life and perhaps we have to learn to accept all as a gift.  That doesn’t mean we become passive.  It doesn’t mean we give up the fight to get better and work hard to have a quality of life that is what we hope and dream for, but it does mean we acknowledge that there are things that come into our lives that we cannot control.  It means we need to embrace the unthinkable and begin to learn acceptance, a day at a time.

* What are some of the issues and problems that you are facing that may require your acceptance?

* Have you learned to accept certain things and then felt a sense of relief and peace once you did?

Beloved God, perhaps one of the most difficult things we face in our lives is to learn to be accepting of those things that we really cannot change. It is very complicated for us.   We ask for your help, your guidance, your love.Help us to learn to trust you completely, that you will love us even when we are facing the toughest of times. Amen.

Posted in Musings on Life | 13 Comments

2014 A New Year

There are two ways of spreading light: To be the candle or the mirror that reflects it  –  Edith Wharton

light of hope2013 was a challenging and difficult year for so many. It points to the indomitable nature of the human spirit that at the close of each year, we allow ourselves a fresh start; a chance to hit the re-set button and try again. We mark this event in whatever way feels appropriate to us, whether with quiet introspection, or joyful noise.

Joy is currently in the rehab center, drawing on her own unshakable spirit to keep moving ahead with her treatments and physical therapy and planning her own fresh start. She wanted me to let you all to know that she feels so blessed to know that you are all out there. Your visits, calls, emails and even your simple good intentions are bolstering her and lifting her up.

Wishing you a 2014 of hopes fulfilled.

From Joy Carol via Katie Sanborn

P.S. One of Joy’s hopes for the New Year is that you will buy and share her book with anyone you know who is need of some inspiration. Your reviews on Amazon will help spread the word.

Peace

Seasons of Joy

Posted in Musings on Life | 7 Comments

Big News!

Seasons of JoyDear Friends and Family of Joy,

Joy is presently in the hospital getting plasmapheresis treatments, so she asked me to post this exciting announcement, which I am delighted to do. I went to visit her in the hospital the other day and she was her usual gracious self; entertaining visitors, encouraging her room mate, and thanking her nurses. I know you will enjoy the book.

Katie Sanborn, editor

Big News!!!

Dear Family and Friends,  I’m so pleased and excited to tell you that Seasons of Joy: Weekly Meditations on Life and Spirit is now published and available on both the Create Space e-store, and on Amazon.com.  Katie and I have already received quite a few special endorsements for the book – I’m including a couple of them here for you to see:

These graceful reflections on the seasons of God’s world are an invitation to ponder the seasons of our lives.  As such, they call us to new and refreshed awareness, to new boldness in prayer, and to gratitude for all God’s gifts.   – Dr. Margaret Guenther, author, My Soul in Silence Waits

Seasons of Joy is one of those books you will want to carry with you wherever you go.  It lifts us from our daily drudgeries with tiny jewels of perspective and wisdom.  How fitting that this lovely book is written by a healer named “Joy!”  – Rev. Susan Sparks, author, Laugh Your Way to Grace

Joy Carol has been providing comfort and hope to her readers for years. In this book, she reminds us to have hope, even in the darkest times. Through Joy’s own personal journeys, we learn to find inspiration in the simplest of truths: that life is a miraculous gift to be savored, if we’d slow down, get quiet, and hear the opportunities God has in store.
Christopher L. Johnson, author, Unsafe In Human Hands

These beautifully articulated reflections on each season’s changes offer us powerful ways to truly notice both the treasures of the shifting seaons… and the invitations to each of us that also arrive with the passage of time.  There is much here to nourish and comfort anyone on the journey.
Nina H. Frost, co-author, Soul Mapping

I’m hoping the publication of the book is not too late for you to consider giving it as a Christmas present to your friends and family. I think it will make a lovely gift. Unfortunately my health situation got in the way of an earlier publication.

Blessings and peace to each of you at this special Season of the year.

Joy Carol

Author, Speaker, Workshop/Retreat Leader, Spiritual Director
Website: www.joycarol.com
Email: joycarol1@aol.com
Spiritual Blogs: www.joycarol.com/blog/

Posted in Musings on Life | 2 Comments

Seasons of Joy

To love life, to love it even when you have no stomach for it and everything you’ve held dear crumbles like burnt paper in your hands. . . When grief sits with you, when grief weights you like your own flesh only more of it, you think, “How can a body withstand this?” Then you hold life like a face between your palms, a plain face, no charming smile, no violet eyes, and you say, “Yes, I will take you. I will love you again.”    – Ellen Bass

nov-29-13There have been moments during these last almost five months when the loss and grief I have felt related to my ongoing illness have been overwhelming – when I have felt that my life was crumbling from under me. I confess there were times when I sobbed and screamed at God to tell me what I was going to do with such a diminished life – one where I was giving up my workshops, my retreats, my Pilgrimage to the Holy Land, even my car. Yes, there were even times when I thought I couldn’t continue to have hope in the midst of such pain and sorrow. Fortunately at such times, there was always some person, some event, some phone call, some tiny miracle that brought me back to having a sense of hope and optimism, of courage and resolution to go forward.

One of those “miracles” came from the encouragement I received from a number of my friends – and especially from my amazing colleague Katie Sanborn, who is also my webmaster – to put together a book of weekly inspirational meditations loosely based on some of my blogs. And so in the last months, when my legs weren’t working very well, I found that my mind, my eyes, my arms, and my hands could still do amazing things –more gifts from God.

So I’m thrilled to announce that in the next week or so, a new book, Seasons of Joy: Weekly Meditations on Life and Spirit by Joy Carol with Katie Sanborn will be published. As the title suggests, the book’s structure is inspired by the changing of the seasons, with weekly inspirational meditations for each one.

Please watch for the announcement of the publication of the book on my blog, in an email, or on Facebook. As soon as it is published you will be able to order it on Amazon as a real book. A few weeks later, it will also be available as an e-book.

So there is always something we can look forward to, something we can do when we feel diminished. And we can hold life again in our hands and say, “I do love you.”

  • Have you felt disheartened because your life has been diminished in some way?
  • What can help you to hold onto your soul and to look at life with love again?

Beloved Giver of miracles and of life, we come to you at times with broken hearts, with diminished spirits. We need so much to feel your presence, to realize that nothing can separate us from your love. Thank you for your endless encouragement, your belief in us as your children – even when we are disheartened. You are our beloved God. Amen. 

Joy Carol
www.joycarol.com

Posted in Musings on Life | 2 Comments

Hope Never Stops

The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.
– Barbara Kingsolver

Joy Carol's helpful neighbors

Neighbors at my beach house who took care of winterizing my house.

The news in the world is not good these days. There is so much pain around our globe. Super Typhoon Haiyan, one of the strongest storms ever to make landfall, has brought terrible destruction to the Philippines to an area already reeling from a 7.2 magnitude earthquake just three weeks ago. Thousands are feared dead. Up to 4 million children may be affected by the typhoon. People desperately need shelter, clean water, medicine, food. More signs of devastating climate change, war, issues over water, are showing up all over the globe. We feel overwhelmed, frightened at our own powerlessness to help.

It’s at times like this that I like to turn to what people who have faced tremendous difficulties have said about life while hanging on to shreds of hope – like Nelson Mandela, who courageously said even in his darkest hours in prison. “I am fundamentally an optimist. Whether that comes from nature or nurture, I cannot say. Part of being optimistic is keeping one’s head pointed toward the sun, one’s feet moving forward. There were many dark moments when my faith in humanity was sorely tested, but I would not and could not give myself up to despair. That way lays defeat and death.” Or His Holiness the Dalai Lama: “No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” Or Howard Zinn who wrote: “To be hopeful in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places – and there are so many – where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction.”

Julie, musician, and friend Jane Weissman

Musician Julie and friend Jane Weissman with me in the infusion room

In my own little world of wrestling with my Paraneoplastic Syndrome, cancer, and my inability to walk without a walker for the last four months, I’m finding that hope is something I need to hang onto and to put daily into perspective. I live in a country with awesome hospitals, compassionate doctors who won’t give up on me and who fight for me, with top of the line medicine. I’ve just completed five days of Intravenous Immunoglobulin treatments that are hopefully helping to stop the antibodies from continuing to attack my Central Nervous System. Every day while sitting in the hospital receiving hours of intravenous treatments, I had friends who brought me food and kept me company, musicians like Yoshi and Julie who came to the infusion room and played and sang with me, and Jacquie who used Reiki and therapeutic touch to massage my hands and take away any lingering fears. So I know that hope can spring forth even in sorrow and fear. Here are a few things that have happened to me that give me so much hope:

* My spiritual directees/companions have picked up where we last left off. They sit at my dining room table praying with me, they call me on Skype – from DC to London, one drives almost 7 hours to visit me in the hospital, another shows up just before I head for the Operating Room and prays me into peace. They don’t abandon me, even though I am operating out of a less than perfect body. I feel needed and a part of their spiritual journey. They continue to give me meaning, joy, and hope in life.

* My family in California calls every day and sends love and the best warm pj’s imaginable.

* Neighbors showing up at my beach house to take care of the winterizing of the place.

* Jane Weissman makes awesome homemade food to take to the infusion room and to put in my fridge – then bravely attacks and organizes my fridge after months of neglect.

* My Physical Therapist Manuel teaches me how to get on a bus with my walker and how to get in my car (parked in the garage for the last four months). We get in my car and I tell him we are going for a spin – me driving – in the garage only – and I feel hope, freedom.

* Jane Gropp loans me her UGG boots that are light weight and not too heavy for my legs.

* Niclas Nagler stops by early one morning and cooks me a delicious veggie omelette.

* My neurologist Dr. Fisher answers all of my texts and emails – usually within 15 minutes.

* My soulsister Donna Sillan returns from working in Ethiopia and says she will be on the next plane to NYC, if I need her. Others from around the country offer to come to help.

* Doctor Bob and his partner bring 2 dozen roses and a commanding prescription: get well.

* Girlfriend Chris and I hang out on my bed eating popcorn and pondering life’s surprises.

* Bangladeshi friends, Dr. Amin and his wife, bring me the best chicken tika ever tasted.

* Another spiritual sister Jan Dyer arrives with bells, berries, laughter, prayers, dances in her heart and makes me laugh and dance in my chair.
* And it goes on and on – too much to write about – but so much to fill my heart with hope.

So I agree with folks like Robert Fulghum, who write about hope: “I believe that hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.” Or Emily Dickinson: “Hope is the thing with feathers / That perches in the soul / And sings the tune without the words / And never stops at all.”

Did you get that last line about hope: “And never stops at all”?

  • Are there things that make you feel that hope has left your heart and soul?
  • Can you focus on the little and big things that are hopeful for you, that can change your perspective?

Beloved Creator of Hope, sometimes we come to you feeling hopeless, afraid, thinking that we or the world are really in bad shape. But maybe it isn’t as bad as we think. Maybe it will work out. Perhaps we don’t need to worry. If only we put our trust in you, God, and move forward with faith and hope and confidence in the future. Then hope will never stop. Amen.

Joy Carol
www.joycarol.com

Posted in Musings on Life | 8 Comments

Surprises at God’s Kitchen Table

I started at 5 years old at the kitchen table with my family supporting me.
I know where I’m from and I know exactly where I’m going.    –
Celine Dion

Participants at the Holy Cross Retreat

Participants at the Holy Cross Retreat

Last weekend I led a retreat at the Holy Cross Monastery for the Congregation of St. Saviour of the Cathedral of St. John the Divine. The title of the retreat was “Restoring Our Souls at God’s Kitchen Table.” I knew it would be a real challenge for me to lead the retreat, because I’m still tied to my slow-moving walker, and I can only stand for short periods of time. Also I’m accustomed to being very active, jumping up and down when I lead workshops and retreats. This time I had to do most of the sessions sitting down, and I moved around as slow as a turtle using my walker. Yes, a big change for me.

At the start of the retreat, we read these words: “Our lives are very complicated – not always what we expect. They are speeding by so quickly that we may not recognize that there are many opportunities to be fed God’s gifts of hope, joy, and light. But we can pause to plug in and reorient ourselves. When we pause to consider the realities of our existence, we may find ourselves asking important questions such as: Who am I? What is my purpose here? Where do I find meaning in life?”

Photo from Holy Cross Monastery taken by Agnes Marcailou

Photo from Holy Cross Monastery taken by Agnes Marcailou

In another session we talked about how many of us try to do too many things, to fill our lives with more and more. We agreed that often the more we accomplish, the more we are expected to do. That the faster we go and the more we do, the easier it is to forget what we really value. We may even misplace or lose people and activities that truly nourish our deepest heart. We have too much on our plate. We are distracted by the sheer number of commitments and responsibilities we have accumulated. Sometimes we are so preoccupied that we actually forget what is at the center of our lives.

If you have read my last blogs, you know that my life has slowed down tremendously over the past months. So I’ve had time to think about who I am and about my purpose here. This past week I met with an oncologist, Dr. Anu Goel, who came highly recommended by my team of doctors at Roosevelt Hospital. Dr. Goel informed me that my cancer and the very rare Paraneoplastic Syndrome (PS) that I have are quite complicated and not simple to treat. First, because of the PS, it is not possible to give me an aggressive chemo treatment to fight the reoccurrence of the cancer, as that could have a negative affect on my central nervous system which is already fragile and compromised. But to not treat the cancer with some kind of chemo and/or with radiation might put me in an even more difficult position. If the cancer returns, the PS likely will too – and perhaps with a vengeance. So now it’s time for big decisions to be made – likely different from what I thought they would be last week.  Life – not always what we expect!!

Gathering at the kitchen table

Gathering at the kitchen table

So I’m very grateful for having had time at Holy Cross to sit at God’s kitchen table with my friends. I know it will help me to make some of the decisions about my next steps.

  • Do you have a kitchen table experience in your life that can help you make decisions?
  • Are you facing a difficult or big decision that you need to make soon?

Oh God, we come to you with far too much on our plates. We need to let you help us see what is important in our lives, to let go of the things that are not meaningful. Forgive us when we lose patience or when we lose sight of you because of our crazy schedules, our expectations. May we remember you are always waiting for us at the kitchen table. Amen.

Joy Carol
www.joycarol.com

Posted in Musings on Life | 6 Comments

Calling on Angels

For he shall give His angels charge over you, to keep you in all your ways.
In their hands they shall bear you up, lest you dash your foot against a stone. – Psalm 91:11

Susan Sparks

Susan Sparks

Have you ever had a Baptist preacher pray over you? If you have, you likely know that there’s a whole lot of energy, faith, power, and other good stuff going on. So when Susan Sparks, my Baptist preacher friend who is also a stand-up comedian – go figure – passionately prayed for angels to surround me the other day, let me tell you that I could feel the breeze of their wings flapping around. There might even have been the tiniest strain of harp music somewhere in the background. I just knew in my gut that I had been really prayed for, and that God would soon send angels to watch over me in this ongoing affirmation and challenge to my life. And that’s what happened and has been happening ever since.

There are so many angels. Some of my special angels are my fabulous doctors who did not stop looking for a diagnosis, who insisted we had to know what we were fighting so I could receive the right treatment. And they didn’t stop. As I wrote in my last blog, they sent my blood work and my spinal fluid around the country to the best labs until the Mayo Clinic came back with the diagnosis: a very rare syndrome called Paraneoplastic Syndrome with antibodies that search out cancers in the body – especially breast cancer. On Monday, September 30, Dr. Paul Tartter, my brilliant breast surgeon, did a lumpectomy and removed lymph nodes at Roosevelt Hospital. So I feel he has dealt with the cancer problem for now, and this will help stop the antibodies from attacking my nervous system. When I saw Dr. Tartter this week, his last words were: “Now let’s be sure we get rid of those antibodies so you can walk better.” And that from a breast surgeon!!

The night before surgery all three doctors talked with me in person or on the phone. I find this quite extraordinary. I wrote them:

Dear Dr. Kamlet, Dr. Fisher, and Dr. Tartter, First of all I owe each one of you a huge thank you for all you have done for me: being persistent about finding a diagnosis, insisting on running one more test, caring for me like I was more than just a patient, and for quickly and skillfully removing the cancer once we had a diagnosis. You are amazing, gifted doctors – all of you. I am so grateful to be your patient and to have the privilege of calling you my doctors. I consider all three of you to be on my healing team.

Andy & Emily Cooper's daughter Erin with Joy

Andy & Emily Cooper’s angel daughter Erin with Joy

And then there have been other special angels who have been there or who have just showed up when I needed them, like Jane and Alice who have picked me up and delivered me to doctor’s offices and the hospital more times than I can count, like my sister Shirley and
the dozens of people who have camped out on my couch over the last months so I wouldn’t be alone at night, like Mayra who somehow found me in the pre-operating room and stood there holding my hand until they wheeled me into the OR, or Curtis my neighbor who comes downstairs from the 19th floor and chants for me before I fall asleep, like phone calls from people that just knew I needed to hear their voice, like Anjie who picks up a dust mop the minute she walks in if she sees dust on the floor, like Chris and Jess who bring me delicious food, like Emily and Andy who go with me to the doctor’s office to hear what might be said and help me ask questions, like all my dear neighbors who care for my beach house and birds in Hampton Bays, like . . .

I’ve written this before but it’s true. I am overwhelmed with gratitude – for my brilliant persistent doctors, for my endlessly loving and supportive family and friends and givers of care, for the real possibility of walking again normally, for the freeing from my body of cancer and hopefully of the antibodies that were fighting the cancer but also attacking my central nervous system. Yes, I still need all the positive thoughts and prayers I can get for the long road ahead – from each of you. I believe God – and you – will help me through this next stage of my life.

I have glimpsed the tremendous love God has for us and I have experienced an extremely deep connection with others. And I know that nothing can separate us from the love of God!!

  • Is there something in your life that you have taken for granted that you want to be grateful for?
  • Have you ever experienced the tremendous love God has for you through the love of others?

O Great Creator, thank you for brilliant caring doctors, for loving and supportive family and friends, and yes, thank you also for the possibility of being able to walk normally again. Help us to not take the simple ordinary things of life for granted – they are special too. May we learn to be grateful for your many gifts to us. Amen.

Joy Carol
www.joycarol.com

 

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“Bad News” Can Be “Good News”

 

Everyone has inside of him or her, a piece of good news.
The good news is that you don’t know how great you can be!        
— Anne Frank

Music to heal by; in the steroid infusion room

Music to heal by; in the steroid infusion room

In my last blog I wrote about the mysterious affliction that seemed to be attacking my health and my central nervous system causing me to have difficulty walking. After weeks of tests, we couldn’t find a real solution and were beginning to think that some kind of unknown virus must have attacked my spinal cord which could have caused a disconnect in the central nervous system. Thus, the problems in my walking.

At the time, I felt relieved to have any kind of explanation!  And I was willing to work really hard in rehab and physical therapy to re-learn how to walk, how not to lose my balance, how not to fall. I had an awesome team of people including Jake my Physical Therapist. He was so encouraging that I could do it. And I tried and tried and tried. I kept my positive attitude, but I could tell that I was not really gaining ground on the effects of the “unknown attacker” on my central nervous system. It felt like I was battling against a brick wall. Although I never said it, I wondered if I would ever walk again.

Joy's amazing neurologist, Dr. Rebecca Fisher

Joy’s amazing neurologist, Dr. Rebecca Fisher

Thank God, I am surrounded by some incredible people like my doctors who will not stop looking for a real diagnosis, who insist we really must know what we are fighting so I can receive the right treatment and get well. Two of those doctors, my gentle Primary Care Physician, Dr. David Kamlet, and my effervescent, not-to-be-stopped neurologist, Dr. Rebecca Fisher, went to bat for me. And they didn’t stop. Before long, my blood work and my spinal fluid had been sent all over the country to the best labs for help with a diagnosis. After weeks of “cooking,” the Mayo Clinic came back with a real diagnosis: a rare disease, something that is almost never seen or heard of. But what is amazing to me about this diagnosis which may seem like “bad news” when you first hear about it – is really the beginning of my healing “good news.” My body with its crazy antics, antibodies, and its “bad news” will likely save my life.

Yes, it’s quite an amazing story.

As I’ve said before, the situation is very complicated. I now know that I have a rare syndrome called Paraneoplastic Syndrome with a very aggressive antibody called amphiphysin in my blood and spinal fluid that searches out cancers in the body – especially breast cancer. When my doctors heard I had the Paraneoplastic Syndrome, they immediately ordered a PET scan test for me to see if there was any cancer in my body. And yes, they located cancer in my right breast and in my lymph nodes. I was immediately sent to a top-of-the-line breast surgeon Dr. Tartter, who did biopsies. He will do a lumpectomy and remove lymph nodes on Monday September 30 at Roosevelt Hospital.

And, as I’ve already stated, the overly active antibodies in the Paraneoplastic Syndrome also attack the central nervous system starting out by attacking the ability of the legs to function which is what happened to me in the last weeks (it’s called stiff legged person). It also causes back spasms, a shock response to loud sounds, feet that don’t feel things or that overreact to touch, etc. If left untreated it continues throughout the body doing damage. My doctors started me on massive intravenous steroids to stop the aggressive immune system from harming further my ability to walk, which has temporarily helped. We are hopeful that they have suppressed the antibody soon enough that I should recover most or perhaps all of my walking ability. Once we have dealt with the breast cancer problem that should stop the aggressive antibody from attacking my nervous system.

I find this all really amazing, don’t you?

My sister Shirley arrived from California to help me go to different tests and to help me deal with the news as it came to us. She was wonderful pushing my wheelchair around NYC. She finally left to be with her family. Fortunately I have Manny and Paula, a wonderful Physical Therapist and aid who are helping me in my home. And I have friends who are sleeping at my apartment, cooking for me, walking with me, making sure I am okay, and who are really stepping up to the plate to help. Too many names to begin to mention but I must mention a couple: Jane and Lou Gropp, Alice Austin, Curtis Harwell, and the Rev. Vicki Sirota have been there 100% for me. I can’t thank them enough.

My spirits are good and I am certain I can lick this, but obviously I need all the positive thoughts and prayers I can get. Yours included, please. Thank you so much.

Yes, I am quite confident I will do very well – and that God will help me through this next stage of my life. After all nothing can separate us from the love of God!!

  • Sometimes we want to be very independent. Is it difficult for you to show your vulnerabilities to others?
  • Can we admit to each other that we really do need help?

O Blessed One, we all take such pride in our independence. We want to believe that by our own efforts and work we can supply all our needs. But sometimes that is just not possible. We need to allow ourselves to admit that we are needy, that perhaps in our moments of weakness we may find our greatest strengths. Help us to come to you like small children – needy but not ashamed. Thank you for your endless love to us. Amen.

Joy Carol
www.joycarol.com

Posted in Musings on Life | 8 Comments

Courage to Trust

Don’t look back too long or you will lose courage and want to stay right where you are.
– Joyce Rupp

trustI’ve always admired people who cope with loss or traumatic events as survivors, not as victims. Most tragic losses and difficult circumstances show up at our door without calling ahead or asking for our permission. We can’t avoid loss, but we can make a decision about the attitude we will take and the way we will respond to it.

I know of people who choose to be a victim when loss hits them, feeling passive and helpless to do anything about their problem. They are filled with doubt, anguish, and frustration and therefore are bitter and negative about life. They often ask “Why is this happening to me?”

But there are other people who choose to be grateful for what they have had rather than angry about what’s been taken.  They are able to embrace the pain of their loss without giving up hope; take responsibility for their own future and face their situation head on. With a positive and upbeat attitude about life, they are determined to conquer their fears and doubts

I’m taking a hard look at those people who choose strong survivor over helpless victim. A few weeks ago when I was visiting my friend in Greece, I started having trouble walking up the hill. Then I couldn’t walk into the sea; I actually fell into it. I chalked it up to being tired, jet lagged, and very hot. When I returned to the USA, my legs felt enormously heavy, and they didn’t respond well to my commands to get somewhere. By the third week I was having difficulty just walking across a room, and at the end of that week, I couldn’t walk at all without falling (which I did seven times in those three weeks).

As my doctor and I waited for my insurance company to approve an MRI on my back, I got worse, so he sent me to the emergency room. Three weeks later I’ve been discharged from the hospital after having every test known to medical science.  These showed that I had no brain tumor, no tumors on the spine, no aneurysm, no stenosis, no pinched nerves, no stroke, no problem with my muscles nor with the bones in my spine.  Each item crossed off the list brought an enormous relief but a deepening sense of mystery.  What was happening in my body?

Finally, when they did a spinal tap, they discovered there were extra white cells in my spinal fluid indicating that some kind of virus had likely attacked my spinal cord which may have caused a disconnect in the central nervous system. Thus, the difficulty in my walking. At last, some sort of explanation!  Armed with that information, I am now in rehab and physical therapy re-learning how to walk, how not to lose my balance, how not to fall.

Joy Carol in Greece

Joy Carol in Greece

It was an amazing journey to travel in a three week period from being a walker, hiker, swimmer to not being able to walk across a room without falling. One of my doctors told me that I may suffer a bit from fear and Post-Traumatic Stress. Although the virus likely left my body some time ago, I’ve already made a decision about my next steps – I’m opting to be committed to working hard to strengthen my body, to finding patience, and to trusting that I will be well again.  And I will be – someday soon.

(In my next blog, I will write more about this healing process and about the amazing team who are helping me to grow and to heal.)

 

  • Have you personally seen the difference between someone who became a victim and someone who became a survivor?
  • What have been some of your losses in life? And how have you responded to them?

Creator, there are so many of us in transition. We may be in pain, filled with fear, confused, ill, startled, terrified. We ask that you give us the courage to move forward in spite of our losses, to help us conquer our fears and doubts and to be positive and upbeat about life. May we have the courage to trust that you will always be with us. Amen.

Joy Carol
www.joycarol.com

Posted in Musings on Life | 8 Comments