Kids View of Adults and Chronic Illness

When we are in the throes of battling chronic illness, as adults, we have specific information and our unique perspective of what we are facing each day (whether we are the one with the health challenges, or, the adult caregiver such as a spouse, parent, close friend, or family member).  Since most chronic illnesses last way beyond many months and often, even years, we learn how to look at our lives with a different viewpoint then most people who are generally healthy.

When we experience a flare-up…and have to excuse ourselves...children only notice that we have left…They do not understand the “whys.”

The kids in our lives; from our neighbors' and friends' children, to nieces and nephews, and, our own sons and daughters, tend to have a different view of our personal battle against chronic disease. Of course, the age of a child has a lot to do with how they see our situation. During the earlier stages of confronting several autoimmune conditions, I left my personal training business to write part-time from our home and speak at a limited number of venues each year. My being home most of the time allowed us to host frequent visitors for overnight stays. It was hard to tell that we were a “one child” family because our daughter often had friends over and nieces and nephews would stay over during summer months and holidays. For me and countless others, chronic illness was an unwelcome "visitor." It didn't make one grand entrance into our lives, but instead, began with short visits that eventually become more regular and, the stays become longer until it had finally moved in full-time! And those earlier phases of illness don’t usually show visibly – hence, the term, “invisible illness.”  So, when we experience a flare-up or a cycle of symptoms and have to excuse ourselves unexpectantly from our "welcomed visitors," children only notice that we have left. They often do not understand the “whys.”

My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

On one such occasion, we had different family members visiting over a Thanksgiving holiday. After helping to get the dinner underway in the kitchen that afternoon, I was having a lot of inflammatory pain in my low back, shoulders, and upper legs. I excused myself to go upstairs and take an anti-inflammatory medication and rest for a short while. After about 20 minutes or so, my bedroom door opened ever so slightly and a small person walked quietly toward my bedside. One of my nieces, who was about 4 at the time, placed both little hands and her chin over the side of my bed and said very quietly, “Are you awake Na Na?” (the nickname that had been given me years before, by my eldest niece when she was about 11 months old and had trouble pronouncing the “J” and other letters in my name, had been adopted by every child after her). Smiling, I said, “Yes.” This little one next wanted to know, “are you still sick Na Na?” Only understanding her reference point for illness which were things like tummy aches, sore throats and fevers, ear infections, and other typical childhood conditions; temporary episodes that were over almost as quickly as they developed. “If you’re ouwees are better can you come back downstairs and be with us?” My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

It is common for people with chronic illness to have more than one condition. In fact, most people with autoimmune diseases eventually develop secondary illnesses. For instance, many people with connective tissue diseases will often end up with another diagnosis such as lupus, Sjogrens, Reynaud’s, and/or chronic fatigue, And, where there is chronic inflammation, there is chronic pain, and where there is chronic pain, there is often depression. The depression is not only from circumstances or psychological (which can often be effectively dealt with through counseling, meditation/prayer, and/or, support groups), but it can also be chemical or physiological, as a result of serotonin levels or other natural mood elevating hormones being suppressed by pain (which can be helped by an anti-depressant or anti-anxiety medications). In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

A few years after that Thanksgiving interaction with my niece, we had moved to another town to help one of my sisters through a bout with cancer. Unfortunately, my health had worsened as I had developed several more conditions that had truly begun to wreak havoc on our lives. I had signed up to take my sister to special appointments (sometimes an hour or two from where we lived) and to every chemotherapy session, and then to the pharmacy and usually the video store to get movies to watch as she rested through the week-end.  During one of these weeks, I had a lupus flare-up and became so ill during my sister’s chemo session that she ended up driving us back home. By early the next morning, I was losing consciousness and I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

…he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”)… then with a nod of his head, the interview was over…

While I was in the hospital, my husband had an unexpected visit. When he opened the door, our neighbor’s son, Theo (who was about 9 years old), had apparently been appointed by a half dozen other kids on the block to retrieve pertinent information regarding my ambulance trip to the hospital. When William opened the door, Theo wasted no time with formalities. With the seriousness of a wartime journalist, he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”) And then with a nod of his head, the interview was over and Theo was heading toward the semi-circle of kids standing with their bikes at our front curb, to deliver the vital news.

…it’s important to be frank with them… to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion…

Of course as kids get older, they are capable of a deeper level of understanding about the adults in their lives who are battling chronic illness. And, it’s important to be frank with them (as well as with other adults looking on) about what we truly going through. This helps them to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion and hopefully, the inspiration to help those who are hurting. 

But we, who are going through the throes of chronic pain and illness, can also be buoyed by those simple child-like viewpoints at times. When I’m in the middle of a flare-up, the intensity of the moment can be lightened considerably as I think of those “kid perspectives” and I remember when my “ouwees are gone,” I can go and play.

~ Cry Some, Laugh More, Pray (& Play) Often ~ Jamey Lacy July

Pray, Eat, Take Meds, Love

Well obviously, my title inspiration comes from the book, Eat, Pray, Love (Viking 2006) by Elizabeth Gilbert. I’ve only read segments of the book but enough to opine that the movie, in which Julia Roberts plays Elizabeth’s character, is not quite as good as the original story, but, stays fairly true to the authors’ journey.  A journalist, who’s found herself unhappy in her marriage, travels to Rome, India, and Indonesia, to do what many of us may only dream of; search for answers, spiritual healing, and peace in our lives -- while traveling to exotic places.

For me and the millions of women (and men) who are battling chronic health conditions, this is more fairytale than reality, since most of us don’t have the physical health, strength, or financial resources, to travel across the world to sort things out and make sense of our lives. The cost of ongoing diagnostic testing, ER visits, medications and treatments typically eat up any allowance for extensive travel expenditures. Physical limitations from chronic illness often make travel an ordeal for most of us and simply impossible for some.

So, how do those of us in the trenches fighting to gain ground with our health - while facing the divorce of our physical capabilities from our bodies, find our path to spiritual understanding and peace? We may not be able to travel to exotic locales, but we can look for a place in our home, in our church, an open neighborhood chapel, a museum, nearby park, or even the library during “off” hours. Any place where we can sit and be quiet with God will work. Here, we can breath in deeply (through our diaphragms) that Divine light and love, and then slowly, exhale, to release anxiety and tension. This creates a perfect opening for prayer which can then lead to that precious quieting of our minds to better receive understanding, or at least, a bit of peace in our unique, and at times, chaotic journeys.

I’ve learned through ten years in the fire of physical pain from several complex health conditions, that for me, the first step is always prayer. It doesn’t matter how you pray – whether casual petitions and thanks, or formal prayers we’ve learned from our religious beliefs. God knows all languages – even our sighs, cries, and unspoken thoughts. Prayer can be something as simple as Author, Anne LaMotte’s “Help me, help me, help me!” and, “Thank you, thank you, thank you!” or as detailed as the 23^rd Psalm (“Lord, you are my Sheppard, I shall not be in want…”). My prayer “staples” in the most troubling moments range from, “God is with me, Christ’s essence is upon me,” to, “Thank you God that things are as good as they are!” And in the worst of my "worst" moments, I mutter prayers like, "G-O-D...are you there?" Or, like a small child to her parent, "I need YOU!"

For those more challenging episodes in the midst of chronic illness, it’s necessary to develop our own individual “triage” (survival) plan. For me, and my care-giving husband, when a flare-up suddenly strikes, our first course of action is also to pray -- only right where we are at that very moment (no time for meandering to the park’s reflecting pond). We get quiet and ask for God’s loving essence, power, and clarity upon the situation. It is truly amazing how much better we both do when I’m in a critical place when we remember to pray first.

Then … I eat.  Usually not pasta or pizza as Gilbert did in the first phases of her journey in Italy, but something “clean” and easy on the digestive system like organic low-fat yogurt with organic fruit and rice cereal, or some black beans with a few tortilla chips (whenever possible we choose organic because it delivers more nutrients and less toxins to the body and FYI – there are some great organic pizzas and pasta right here in the U.S. ;-)!

This prepares my digestive tract for the next step; take meds.  I take whatever medications are necessary – conventional and/or natural remedies to address my symptoms.

Finally, I settle in to a relaxed position – lying on the bed propped up with pillows or reclining in a comfortable chair…and it is here, in this place and at this point, that I seek to experience “love.”  Obviously in these circumstances, I’m not referring to romantic physical love but soul love. If my husband, daughter, or a close friend is with me, their loving presence is a balm to my pain. I also think of other beloved people in my life who have shown me love and I give thanks and silently pray for blessings upon these earthly angels. I think of moments that have brought me the most joy in my journey here and let those thoughts of love flow through my body, and in most cases my condition begins to stabilize, Again, I give thanks. Then, after I’ve prayed, eaten, taken my meds, and loved, and I’m feeling better, I might read a book about someone whose life if very different than mine…yet somehow quite similar.

Cry Some. Laugh More. Pray Often – Jamey Lacy July

The Only Salvation from the Death of Our Life Dreams is the Birth of New Dreams

 “The pain of lost dreams is too much for any human soul to bear.” Small Island (PBS 2009)

The recent celebration of Easter – which embodies the truest concept of life, death, and resurrection, has caused me to further examine something I’ve been grappling with for a while now; the death of our “Life Dreams.” When a baffling chronic illness and secondary conditions literally derailed my body and health, and, our lives about 10 years ago (I say “our” because when one spouse/parent becomes seriously ill in a family, everyone is affected), we quickly learned how fragile and unpredictable life truly is. As the months and years transpired, and we searched for a diagnosis and a cure, I had dozens of near death moments – some in hospital ER’s and some at home. We became very familiar with the sobering choices of calling an ambulance and going through the often frightening and frustrating experience of an emergency room (because when your health is failing from an undiagnosed chronic illness, treatment is typically more “miss” then “hit.”) Our other choice was to call our closest loved ones -- those who could handle the erratic highs and lows of someone battling the unknown in a quest to stay alive and hopefully recover, and, our Reverend and church family to pray for, and with, us.

Struggling to outwit death wasn’t the only battle we became familiar with. As time went on and tens of thousands of dollars were spent in our quest for my healing, we began to experience the death of our dreams…the plans we had made for our marriage and family, for my work and career, even our retirement, were slipping away. After I left my personal training and physical re-conditioning studio and my COBRA ran out, we were unable to get health insurance due to the fact that I was ill (pre-existing conditions). My husband, William, was self-employed as a writer and speaker, so we didn’t have access to a group policy.  Subsequently, every medication, every visit to a specialist, every medical test, went straight out of our pockets. We were not able to sell our beautiful home quick enough in a slowed economy and helplessly watched as the bank foreclosed. As I battled the illnesses, we also saw the decline of my body in my physical strength and appearance. William took on various extra jobs including substitute teaching and a brief stint in the retail fitness business (which was a miserable experience for him) to help defray the exorbitant costs of “the illnesses.” I felt like such a burden as he also struggled to balance graduate school with all else he had to do. His goal was to finish as quickly as possible so he could get “a job with benefits” to better afford his wife’s illness. 

There were plenty of physical, material, and financial losses but the most gut wrenching, painful loss in this whole ordeal has been the loss of our life dreams and plans.  We stopped talking to adoption agencies as we realized our hope to adopt a child in need of a loving family, was no longer a possibility. Book projects and lecture series had to be canceled and our dream to travel one day to Ireland and Egypt vaporized. After 20 years of living in a “home,” we struggled to live in an apartment with carpet that left my immune system even weaker due to newly acquired chemical and allergy sensitivities. Our hopes to help our daughter through college were relegated to small tokens here and there and her relying heavily on some scholarship money and school loans. The regular donations we made to charities that were near and dear to our hearts, shrunk to small random tokens, and we actually debated whether or not to ask one of these organizations for help in our struggle.

We had always leaned upon our faith for strength but at times even that seemed to fail us. We believed in thinking and speaking positive affirmations and still, after everything, believe in the power of loving thoughts and prayer.  When one visit to the ER ended up in a week’s stay at a hospital where I was placed (against our better wishes) upon extremely high doses of prednisone, the devastating side effects seemed to be more than we could bear. My once healthy bones became so brittle that after 6 months, spontaneous fractures had occurred in my hip, ribs, and low back, and I was no longer able to share that simple but sweet evening walk with my husband. My new mode of activity was relegated to a wheelchair or walker.  William printed a poster with a photo of me from a nutrition & cooking workshop event I presented a couple of years earlier (featuring a much leaner, fitter, and happier “Before Prednisone” me) and placed it on our bedroom door.  The caption read, “This is The REAL You!” But after surgery for cataracts and sobering brushes with breathtaking heart pains – later diagnosed as “unstable angina” (more damaging effects of prednisone) we came to a moment of reckoning; I was probably never going to feel, be, or look, like that woman in the photo again. We sadly agreed to say good-bye to that woman that I had been for most of my life, and threw away that poster. We also realized that we were saying good-bye to most of the dreams we had had for the way our lives would work out. It was time to “put to rest” those plans and to allow ourselves to openly grieve those losses. At that time there was a mini-series on television I was watching called Small Island (PBS 2009) and one of the main characters said, “The pain of lost dreams is too much for any human soul to bear.”  I cried from the depths of my soul and from every place in my heart as I thought of those words and said “good-bye” to our own lost dreams.

The grieving process has taken some time and still ebbs and flows like the tide, but we’ve slowly begun to embrace the “Easter Factor.”  The only salvation from the death of our life dreams is the birth of new life dreams. While it’s essential to experience our grief over such losses, it does not mean that we have to lose all hope. In fact, it is even the smallest glimmer of hope that can give us the strength to rise up from those ashes of death and resurrect new dreams…to birth new life plans. As time unfolds, we are learning to form new possibilities for our lives; still allowing for the miracle of healing while also taking into consideration what we have here and now. 

Wellness Wishes,

Jamey

After Thoughts

Has an illness, injury, or other set-back caused you (and your loved ones) to lose sight of your life dreams? How have you handled this loss? Have you been able to resurrect or re-birth new dreams?

We welcome your insights and comments.

Paralysis of the Spirit

Deep depression and high anxiety can feel like paralysis of the spirit. When you're deeply depressed you don't want to go anywhere, do anything, feel hopeless, and you can feel numb to even the things that normally give you great joy. When you are feeling highly anxious, you can feel emotinally off balance, afraid, and small things become seemingly huge and insurmountable problems that you feel are all stacked up in a way that sweeps over you like a tsunami.

Sometimes you can shake it off and sometimes you can't. When you can't it's time to call upon people who love you and inspire you. If that's not possible, or not working, perhaps it's time for a psychotherapist to help you navigate your way back out of the dark. Don't let depression and anxiety shroud you like a wet blanket because they have a way of gaining momentum and pulling you into a downward spiral. No matter what troubles you, there is a pathway back to feeling better. Reach out for a helping hand.

-William

February 2011 Telephone Support Group Discussion Recording

Here's the link for the February, 2011 telephone support group call. Jamey is facilitating a discussion on the importance of building a team of people around you who can support you in the various ways you will need help while living with chronic illness. Pardon the gap on the audio when I start talking the first time, had a glitch for a moment.

The call is one hour and you can click here to listen Feb 2011 Telephone Support Group Recording

Do your friends and family "get it"?

Do your friends and family "get it"? When I say this, my question is, do they understand what you're going through? When it comes to chronic illness, not everybody can understand the experience. Now, I'm not talking about short-term illness, or a surgery that repairs you to almost normal condition followed by a reasonable recovery, ...I'm talking about long-term, life changing, body changing, painful, chronic illness - causing problems that significantly restructure your lifestyle while sending you down a road in life you never even imagined.

I've noticed that generally, three types of people "get it". People who have experienced a chronic illness of the same magnitude, people who have witnessed chronic illness in someone close to their heart and felt their pain, and people who are highly empathetic types.

Why do some people "get it" and others don't? In our telephone based support group's discussion yesterday, I briefly mentioned this and I thought I'd talk about it more here. When you have a chronic illness, after a while, you find out that not everybody can really handle seeing it or even hearing about it. For some people, it's frightening to see you because you represent a stark reality to them, the reality that it could happen to them. They too could get sick and lose everything.  For others, there's the the lack of understanding about some illnesses, especially if they aren't well known or are controversial. Some others don't mean any harm, they just don't have even the most remote idea of what you're living with.

...so what can you do? Where does this leave the person with an illness, where does this leave caregivers, or friends who do understand what's going on? Well, you have to realize and accept that there are those who you can count on to understand and those who you can't count on to understand. You can give information such as websites, books, or television specials to people to see for themselves but that doesn't convince everyone.

Once you know who will "get it" and who won't, you can save yourself a lot of grief but turning your attention and energy toward those who will support you. I truly hope you have a network of people in your life who understand what you're going throuigh. But I know many of you find yourselves with less friends and family supporters now than you have had at other times in your life.... so spend time with the people who do understand you because they are truly a treasure and you will find them a tremendous source of inspiration, hope, and warmth.

-William July

Hope is the oxygen of the soul

When it comes to managing an illness, like any other big task in life, HOPE is the energy and you will need to power up your engines, day to day and moment to moment. Hope is the oxygen of the soul.

When we have hope it gives us the ability to keep moving forward, even when we don't want to - or when we feel stuck in a place that seems to have finally worn us down to nothing. When medical bills are piling up bigger than the mailbox can hold, when prescription costs keep rising, as you battle with insurance companies about denials or shrinking coverage, when yet another diagnostic setback occurs, as well as dealing with the basic day-to-day survival issues you may have,....

...try to hang on to some hope, even if it is the most teenie tiny spark of hope. It energizes us mentally, physically, and spiritually. ....so don't give up hope. Even when you feel overwhelmed, keep at least a little fire of hope burning so it can once again burn as a fire in your heart and soul.

-William July