Category: <span>Theology of Caregiving</span>

On a recent evening, my wife and I were sitting in the living room, both of us reading and sipping hot chocolate before we ended our day. She, snuggled in a dark pink sweater and wrapped in her light pink afghan, caught my eye as I sat in my chair. She smiled.

“I enjoy the peace of our life together,” she said, “and I enjoy knowing I don’t have to worry about you leaving me.”

At first I thought she was talking in reference to the novel she was reading.

I raised my eyebrow. “I didn’t know you had ever worried about me leaving,” I offered.

“I did. Not a lot, but I did. It was right after I was diagnosed with MS.”

“Oh.”

I remembered her telling me about a lady in her MS support group whose husband left her after they learned she had MS. At the time I thought she was simply sharing information. And I remembered (about that time) she also mentioned she had read in a book about spouses who leave their partners after learning of an MS diagnosis.

I’d like to think my commitment to her has always been so blatant and obvious that she never would have wondered about me leaving her. But then again, after she heard of a husband leaving his wife, after reading a chapter in a book about it and after living with me and my disbelief about the neurologist’s diagnosis, I can see how the fear of me leaving may have felt very real.

We’ll soon return to our honeymoon cabin to celebrate our 20th wedding anniversary. I’ve never considered leaving. She’s been the center of my world and has always held my heart. She’s God’s best gift to me and is His most constant and present expression of grace for me. Theologians may quibble about that, but I have no doubt that God loves me: He gave me her.

While I wish she had never experienced the fear of being abandoned, I think I understand the emotional dynamics. And I’m certainly glad she navigated her way through her fear and enjoys our relationship without concerns.

How did I miss her fear? I think it was because in those early months following her diagnosis, I spent a lot of time trying to do what guys tend to do most when they feel like they’re losing control … I tried to fix things. I focused so much on the practical things required for us to handle MS well that I overlooked her fear. I spent so much time being a cheerleader that I missed her concerns.

(Besides, if I’m learning to give shots in her stomach, buying books about MS, and bumping up my life insurance so she’ll be taken care of if I die first, how on earth could she think I’d consider leaving?)

While I made good plans for the future, I missed some of the important emotional content she was experiencing. I assumed she, like me, looked into the future and saw us always together. But it wasn’t so clear for her then. I’m glad it is now.

I know husbands can disappear when their wives are diagnosed with significant illness. (And some wives leave when their husband is the patient.) Just this past week, I heard from a friend about a woman who’s husband left her after she learned she has cancer. It happens often enough that it may even be normal for someone who is diagnosed with Multiple Sclerosis or an other chronic illness to wonder if her or his spouse is going to remember the “in sickness” part of the marriage vows as well as they remember, “and in health.”

Caregiver’s Tip:

Even partners in solid marriages can be fearful of abandonment. If you think you need to reassure your partner that you’re in it for the long haul, do it.

MS Caregiving Theology of Caregiving

It’s Sunday and here’s something I never thought I’d write about in this blog: crop circles, clergy without faith, and an alien invasion.

I watched Signs again last night with my teenage daughter. She had not seen it before. It’s a movie that leaves me wanting to know more about one of the characters. I wish he were my neighbor so we could sit out back, drink coffee and share our understandings. Throughout the movie, Rev. Graham Hess (played by Mel Gibson) struggles with faith and his expectations of God and life.

Rev. Hess is a priest who lost faith following the death of his wife. You learn through his flashbacks that before the movie begins, his wife was struck by a vehicle while taking a walk at night. She was pinned against a tree by the vehicle and lived just long enough to talk with her husband who arrived at the scene, very ministerial, in his black suit and white collar.

Signs is about the crisis of an alien invasion which follows the appearance of crop circles around the world. I’ll not pursue that line here, but the story is done well because the focus is on Father Hess, his two children, a young son and younger daughter and Hess’s younger brother who lives with him.

Against the background of the invasion, M. Night Shyamalan develops a story in which the crisis can work well as a metaphor for understanding how a family struggles with the invasiveness of a disease like Multiple Sclerosis. The invasion impacts every family member, they don’t know what to expect, emotions run high and family dynamics swirl as new information arrives (or doesn’t).

Any invasive crisis forces choice of action … do I fight, focus on what’s important, learn to care in new ways or get lost in longing for what was?

This is Hess’s crisis of faith: he once believed in signs. He knows his wife should not have been killed. God is good. Bad things are not supposed to happen. His wife died. He wants to feel that “whatever’s going to happen, there will be someone there to help”. He’s alone on the dark side of the moon without his wife and without his faith.

He explains the crisis in this way to his brother:

“People break down into two groups. When they experience something lucky, group number one sees it as more than luck, more than coincidence. They see it as a sign, evidence, that there is someone up there, watching out for them. Group number two sees it as just pure luck. Just a happy turn of chance. I’m sure the people in group number two are looking at those fourteen lights in a very suspicious way. For them, the situation is a fifty-fifty. Could be bad, could be good. But deep down, they feel that whatever happens, they’re on their own. And that fills them with fear. Yeah, there are those people. But there’s a whole lot of people in group number one. When they see those fourteen lights, they’re looking at a miracle. And deep down, they feel that whatever’s going to happen, there will be someone there to help them. And that fills them with hope. See what you have to ask yourself is what kind of person are you? Are you the kind that sees signs, that sees miracles? Or do you believe that people just get lucky? Or, look at the question this way: Is it possible that there are no coincidences?”

He longs for there to be no coincidences, but he can’t shake the thought that maybe he is on his own.

In a scene when his son, Morgan, is dying, Hess yells at God, “Don’t do this to me again. Not again. I hate you. I hate you!”

Hess is an emotionally honest man. But he can’t know yet that the asthma attack is a good thing. It turns out to be “more than coincidence”. (I’ll not spoil the ending for you.)

The crisis is resolved for Hess. He sees the event as a sign, evidence, that there is someone up there.

For some, having a family member with Multiple Sclerosis may bring no challenge to their faith. For those who struggle, though, Signs is a good movie. It provides an apt metaphor for thought and offers a story of faith renewed.

Theology of Caregiving

It’s Sunday.

In the medical literature one frequently reads, “there is no cure for Multiple Sclerosis.”

So, do you pray your loved one will be cured?

Or do you pray the disease process will be kind? Do you pray for a long time between relapses? Do you pray for courage as you face a foreboding future? Do you pray at all?

I pray.

However, I don’t pray for a miraculous healing. I can’t pray that, because I really don’t expect it’s possible. Whether that’s weak faith or simply a keen awareness of reality, I’ve always found it difficult to ask God for something I think is impossible to receive.

We’ve all heard stories about people who have been impossibly cured of diseases. In many cases, I’ve also learned later their “cure” was only a remission and their disease had come back as mean as before. I don’t think God will tweak the laws of physics because I want Him to do a miracle for my wife.

I believe it’s miracle enough that He is present in our lives.

In terms of her Multiple Sclerosis, I thank God for my wife and for our relationship. I thank Him for loving us. I pray for stamina. I pray for a kind heart. I pray for courage. I pray for patience. I pray I’ll be a wise caregiver. I pray for very long periods of time between her relapses. I pray I’ll always be able to afford her medical care. I pray I’ll live long enough to care for her for all of her days. I pray I’ll always be a blessing to her. I pray I’ll always be as strong as situations require. I pray for goodness and mercy.

I pray for others I know who are MS patients or MS caregivers. I pray for the scientists and doctors who are working on a cure and wish them God-speed.

It’s Sunday. Today and every day, there is much to pray for.

Caregiver Tip: Prayer is an important resource for a caregiver.

Theology of Caregiving

It’s Sunday.

Theologians and philosophers have wrestled long with an odd problem. They, like many who suffer or who care for someone whose life is limited by a disease, wish to figure out how to make three accepted truths true at the same time.

They seek to explain the unexplainable. For me, at this point in my life, Theodicy has become a philosophical distraction. It’s like a Rubik’s cube for the theologically minded. Fun to attempt, but once solved it does nothing to make one’s life better. Nor would a solution take away the pain of life.

The three truths that cannot be simultaneously true are: 1) God is omnibenevolent or all good, 2) God is omnipotent or all powerful, 3) Bad things happen.

Most accept that God is all good and all powerful. And we all know well that bad things do happen.

“Life is hard,” we hear. John Wayne supposedly took the truth one phrase further saying, “Life is hard, especially if you’re stupid.”

We all make bad things happen for ourselves. But it also seems, more times than not, that bad things happen without cause.

Just as no one yet knows what causes an MS patient’s immune system to attack the myelin of the body’s own neurons and destroy nerve cells, no one knows either why other bad things happen.

Theodicy is a red herring, a philosophical distraction pulling attention from the real issue at hand. I can be, as Elvis said, “taking care of business,” or I can waste my time angry at an unsolvable problem which is best left to professional theologians.

This works for me: God is here. Recall your worst experiences. Think about them in terms of God’s location. Where was He? I can’t prove it (I think that’s why they call it faith), but I believe God was there.

When you’re angry because you’ve ripped the front tire off your wife’s wheelchair and, well, you were tired of pushing it in the August heat, anyway, so there … God is there. When you hear the diagnosis, God is there. When you’ve done all you can, given all the medicine and you feel helpless and useless because you can’t stop your loved one’s pain, God is there.

He is present when the worst things happen. Does He make the bad stuff stop? Usually, not. And while I’ve not decided what it is exactly that He does here or how He does it, I do believe there’s enough evidence in my own life to suggest that He really is here.

Like an optical illusion that cannot be resolved in the dark, questions of Theodicy really do not matter apart from the interest generated by the conundrum they provide. Solving the problem of Theodicy will not make life better or more bearable. But for me, knowing that God is present does.

Now, having stated my present thoughts about the problem presented by a good, powerful God and a world full of evil and disease, I’ll admit I’ve often been caught in efforts to resolve Theodicy, not as an intellectual puzzle, but because I needed to work on a solution so that I could better understand my own faith.

As they occurred, different circumstances in life have driven me to try to understand them. There have been times when my efforts to resolve Theodicy’s dilemma have absorbed my best efforts. I’ve dumped my anger and energy into trying to understand how evil can exist if God is good and powerful.

I was angry when my wife was first diagnosed with MS. “It’s not fair, God, she’s too good for this!” and “What right do You have, God …”, etc.

But like one who grows frustrated with a Rubik’s cube and sets it aside having grown weary of the struggle, I’ve quit trying to resolve the unsolvable. The effort there is pointless and wasted for me.

What does matter now and what I find to be helpful, is the notion that God is here in the middle of it all and not off watching us from afar. God is here.

In my darker periods, I’ve spent many evenings sitting outside beneath the stars wondering, “why doesn’t He do x or y?” “What does He do way out there beyond the edges of matter?” I found it very easy to see God as a confounder of life when I gave in to the temptation to focus on a resolution to the philosophical problems presented by a God who is omnibenevolent and omnipotent, while bad things happen.

But I’ve always been able to list many more good things that happen than bad. And I’ve learned it’s harder to be actively angry at a God who is near than one who is far away, doing nothing as He sits outside the universe watching us with an experimenter’s interest.

Occasionally, I’ll find a smile on my lips that sneaked up on me. It happens when I think to myself, “God is here.” Of course I frequently jump to the question that God’s immanence begs, “What’s He doing?”

Who knows? But relaxing in the thought of living in a gracious universe in the presence of a loving God is better than devoting time to solving the theological puzzle of Theodicy.

Caregiver Tip: Allow faith to be a source of strength.

Theology of Caregiving