National Invisible Chronic Illness Awareness Week

When it's not getting better: Spiritual Resources

Virgil M Fry
Author

Mr. Fry is the author of Warmed by Fires of Hope, & Disrupted: Finding God in Illness & Loss (Leafwood Publishers). He has been a hospital chaplain, adjunct professor and presenter on coping with serious illness and grief and several articles. His wife of 33 years has ongoing chronic illness issues (diabetes & dialysis).

Visit his website

When it's not getting better: Spiritual Resources

HOST_DonnaR: Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Donna, and I'll be your host for this hour. We will open in prayer; then our guest will present the topic, after which there will be a question and answer period, then I will close in prayer.

Let's pray.

Father, thank you for this week of special seminars to bring awareness to chronic illnesses and those who live with them. We ask you to bless our speaker today and speak to us through him. Also, bless each one who is attending this session, and let all that we say and do be pleasing in your sight. In Jesus' name, Amen.

Now, I'd like to introduce you to our guest speaker.

Virgil M. Fry is the author of Warmed by Fires of Hope, & Disrupted: Finding God in Illness & Loss (Leafwood Publishers). He has been a hospital chaplain, adjunct professor, and presenter on coping with serious illness and grief, and has written several articles. His wife of 33 years has ongoing chronic illness issues (diabetes & dialysis).

His topic today is "When it's not getting better: Spiritual Resources." Virgil, we are happy to have you with us this afternoon, and look forward to what you have to share with us.

Virgil_Fry: Thank you very much. It's an honor to be here as part of this week's presentations. Greetings from Houston, TX. My vocation is a hospital chaplain in a major cancer center here, and I learn a great deal every day from patients and families dealing with serious illness. But my other role is an ever greater teacher to me. My wonderful wife, Caryl, is now on medical disability after 25 years of teaching school, and she and I are learning the ropes of maneuvering through medical systems and home life that is a challenge.

She is a long time Type 1 diabetic (50 years), and now is on dialysis which we do at home with a special machine. She also is restricted on walking because of a degenerative bone disease, so that has curtailed her mobility considerably.

We feel fortunate to have each other, to have the emotional and spiritual support of lots of people, to have the ability to keep on keeping on in spite of limitations. She's the expert on managing chronic, debilitating illness. I'm the sort - expert on being a supportive caregiver while maintaining my own personal jobs and needs for sustenance.

I'd like to share with you an article that comes from my book Disrupted: Finding God in Illness and Loss. It's a few statements that reflect what I am learning and is quite important to any of us who have to learn new ways of being, new ways of acting, new ways of thinking when a serious illness breaks into our lives. It's a reminder that life is an ongoing process, and we need a very-present God to walk with us through all our mountains & valleys. After I list these statements, I'll comment on a few of them, and then will work with our moderator to listen to some of your questions and comments. You may need to extend me a little "grace" because chatroom technology is not one of my strong suits!!!

From Disrupted: Finding God in Illness and Loss (Leafwood Publishers, 2007)

FACING SERIOUS ILLNESS:

* ADJUST TO NEW LIMITATIONS WITHOUT BECOMING PASSIVE.

* LOVE AND BE LOVED

* REMIND YOURSELF: NO ONE IS AN ISLAND.

* PRAY FERVENTLY. BE HONEST AND SPECIFIC.

* EDUCATE YOURSELF ABOUT TREATMENT.

* MAINTAIN HOPE, DIGNITY, AND PURPOSE.

* ALLOW FEELINGS TO BE EXPRESSED. REMEMBER: JESUS WEPT.

* FEED YOURSELF WITH THE LIVING BREAD.

* MEDITATE. LET YOUR MIND WORK WITH YOUR BODY.

* RECEIVE THE SUPPORT OFFERED BY CARING PEOPLE.

* REMEMBER WE CAN ONLY LIVE ONE DAY AT A TIME.

* CLAIM THE GIFT OF GOD'S PRESENCE.

Now, let me add a little to some of these (I am a minister...we're known to always have a "few more things to say."!!)

First, to adjust to new limitations is a difficult task, and we each do that in our own ways. Lots of people offer free advice to sufferers on how the sufferer "ought" to be acting, but only those who have been through your particular event can relate to the turmoil you're going through. People of faith can be extremely helpful in walking beside you in your process of learning to live with limitations, and some can actually make your burden more burdensome by adding on new guidelines. So be open to the support of others, and be kind to yourself in the adjustment. You'll have some days better than others, and you'll be amazed at what lifestyles can still be endured and even enjoyed in the midst of disruptions.

On prayer, I've continued to be amazed: God expects us to be honest, forthright, and open with Him. I've come to the conclusion that He isn't surprised at our intense feelings, even the so-called negative ones, and that He welcomes the dialogue just like we'd welcome such honesty from our own children.

And a word about treatment and seeking medical care: it's not easy, even with the resources of our 21st century medical knowledge, to find the group of experts that can help you best get through your particular illness. Some medical personnel are more equipped than others to look at you as a whole person, not a diseased patient. Be bold in asking for help, and if you need other opinions, it's usually a good idea to seek those. It is, after all, your body, your life, that's on the line.

About feeding yourself with the Living Bread (a reference to God's words) and meditation: without going overboard, these resources can be a wonderful counterbalance to all kinds of chaos in our lives, and help center us towards those things that are most important: relationships, purpose & meaning, and hope.

Now that you've been given this "sermonette", I'll try to figure out how to start responding to some of your comments and questions.

His: What is the best encouraging way for me to support my husband to become a "supportive caregiver" with God's help, while "maintaining his own personal jobs and needs?" While he loves God and wants to develop his relationship with Jesus, bible study seems to be one more thing on his endless to do list. In actuality, daily prayer and bible study changed my life. I already know reminding doesn't work, and inviting him to join me hasn't really helped either (it feels like a reminder). I'm already praying. I know encouraging is the way to go, so are there encouraging words that you would like to hear once in a while?

Virgil_Fry: I think it's a matter of balance (an ongoing battle for everyone, isn't it). Bible study can be burdensome when we're in the crisis management mode, but lifting a short verse or phrase out for personal meditation is helpful. I think it does encourage the spouse to hear occasionally a word of thanks for carrying on, for helping accompany this journey.

cj_Encourage: Could you elaborate on what you mean when you said "MEDITATE. LET YOUR MIND WORK WITH YOUR BODY?"

Virgil_Fry: For me, to meditate is to deliberately slow down, to hush my rushing thoughts, to pray silently, to repeat to myself God is bigger than me or my problems. For some, it's much more involved than this, but for me, I have had to learn to quiet my high anxieties within by some simple techniques like this. And I think God is often heard in the "still small voice" rather than the loud explosions.

HOST_DonnaR: What you said about some people making your burden more burdensome by adding new guidelines is so true. It's frustrating when people say they've read a book or heard of something that is a "cure" for what you have, when there is no real cure. How do you respond to those people?

Virgil_Fry: I, as well as my wife, have received lots of free medical and spiritual advice that has been worth every penny we paid for it! I have tried to learn to be graciously firm and kind when something is being pushed onto me that I may or may not want to know about. I remind myself that someone who is trying to help me has good motivations, just poor judgment. It's hard enough to gather medical information when you're trying to get through the crisis without seeking out everyone else's solutions too.

Kathleen_Wells: Sometimes I don't know if I should tell my husband how I am really feeling. Once he said that my illness wasn't too burdensome because I didn't talk about it or complain. What helps our spouses most in dealing with our chronic illness? Is it better to suffer in silence?

Virgil_Fry: It's hard to know in any marriage how much information needs to be shared and what becomes burdensome. Again I believe in balance. I do think everyone better benefits if there is sharing, even the hard stuff like overwhelming feelings or despair or weariness in the battle. Both parties in that marriage have lots of plates spinning in the air at once, and it helps to have some sense of what the spouse's perceptions and inner battles really are. It's not healthy to try to protect someone from your own needs and battles, and to carry your burdens in silence.

Angie: What are some good ways that you have found to express feelings to those who are involved in your healthcare/your wife's healthcare?

Virgil_Fry: I've tried to start using feeling words more, to focus on what's a feeling and what may or may not be reality, to negotiate with someone by saying "Can I tell you something without risking an immediate fix-it answer? Conversations have to be negotiated sometimes, and asking permission to "vent" seems to help diffuse anxiety on the listener's part. Occasionally we just need someone to say, "It's okay, whatever you share with me. I'm here with you."

Shep: You work closely with people who are losing a loved one, or perhaps dying themselves. What thing(s) do you think they want most from others -- time with them, cards, phone calls, etc.? What things do you hear them saying would be most helpful or most meaningful during that time?

Virgil_Fry: People who are in the active dying process have the same needs as anyone else - companionship, prayers, cards, personalized gifts, etc. They do need to know of their importance to you, and that they are your "teachers" along the way (rather than you being just a giver or caretaker, you're also a learner). Usually it's the little things that mean a lot - short visits or calls, taking care of a household chore, running an errand, getting a family member a break, etc.

Cindy: What are your thoughts about those that say "You just are not confessing the Word enough and claiming the Scriptures or you would be healed"?

Virgil_Fry: I think it's very easy to put tasks on others that really aren't from God but from insecure folks. The book of Job is very clear about this: companions that espouse windy words from their healthy hills, who haven't experienced the loss and turmoil, are not helpful to the one suffering. No one has all of God's knowledge, we only know we need a God who will meet us and carry the parts we can't carry, even in our desire to believe fully.

p.j: Out of all you have shared, the hardest point you shared for me is BEING KIND TO SELF - I just can't seem to get past how I ended up like this? I know in my head it's not my fault - people get sick, yet, even still somehow, some days, I think maybe more mind over matter. Though on the other hand, I know that it's not gonna change a thing. Reality kicks back in. Guess all roads point back to God and staying in acceptance?

Virgil_Fry: Wow, you're expressing what most of us deep down struggle with. I think what you're saying is one of the hardest parts of living with an illness, without trying to add on the extra burden of "what have I done wrong"? Bless you in your journey of going from your head to your heart with this message of grace...you'll get there!

p.j: When you say no one is an island- for some of us, we do feel like islands. Not all of us have spouses that support us the way you do your wife. I don't know how else to not be a burden to family? They don't understand the pain, etc.

Virgil_Fry: Yes, many folks like you do travel without a spouse, and also many people within marriages feel like an island because of the lack of sharing. I think you're right. It's difficult to find those even within our own families sometimes that understand, or want to understand, what's really going on. But there are people out there that do want to be a part, and I pray that those folks will give you your stamina and let you "be really you" at times.

Angie: So, is there never a time when some silence about how you are really feeling is golden? Is silence, with invisible illness, always causing more harm than good? (in reference to your reply to Kathleen_Wells)

Virgil_Fry: Silence can be a healthy thing, but not silence that is always stuffing away deeply felt responses. Sometimes we choose to be silent because we're afraid of being rejected if we venture out of our world, or we think we're only being a burden to someone and that we should always present ourselves as "together." Silence can be helpful, but not to that extreme.

cheryl: I think I have just realized something myself. The more you were talking about the positive, the angrier I was getting and more depressed to the point my stomach hurt because I just realized I have got to get through this anger and accept it and stop trying to push it down. I have been telling everyone I am ok and them turn around five minutes later and explode. I have been praying positive prayers to God because I did not want him to know how angry I was, like he could not see it when I would cuss someone out -Light bulb moment.

Virgil_Fry: And that anger is a God-given response, a means of survival, that we can use for our good IF we let it. Sometimes we turn anger inwards and present a "happy face" to the world, thinking that's what God or faithful people expect. But the Bible is full of faithful people who spent a lot of time during crisis being hurt, angry, frustrated, etc, and God still calls them faithful.

We must close. May God bless each of you. I'll turn this back to our host now.

HOST_DonnaR: Thank you, Virgil for a wonderful presentation!! I would encourage you all to visit Virgil's website. I also want to thank all of you who participated in today's chat. Now, let's close in prayer.

Father, thank you for allowing Virgil to share with us today, for the insights and encouragement he has given us. We ask you to bless him in his ministry to others, bless his wife as she lives with chronic illness, and bless each one who participated in this seminar this afternoon. As we leave, be with us throughout the week, and help us to remember that you are in control, no matter what our situation may be. We thank you for your presence with us this afternoon. In Jesus' name, Amen.