Not that, but this...

When I really want to write, I do not. Fear, I guess ... since fear drives so much of my life these days ... inhibits me, hinders me, paralyzes me. I am learning to accept that change ... a bit ... but I also would like to find ways to write even when I am afraid of what I want to say—to capture before it is lost—to do so anyway. Writing settles me. Writing soothes me. Writing contains, at least in part, the things within me that cause the upsettedness I do not always know is there, is happening, is causing my world to be more challenging that it need to be.

I found this article. This really, really good article. It says all the things about what people say that I find hurtful in words that are not my words. It says the things that I want people to hear as something important and worthy of being considered, rather than merely Myrtle being ... upset.

It it is an article sort of like the Eat This, Not That approach to making choices in what you consume, but with regard to making choices in what you say. What you say to those who are chronically ill. The article is about two particular diseases/conditions, Fibromyalgia and Chronic Fatigue Syndrome, but I believe that the heart of the message holds true for all chronic illness. It holds true for Multiple Sclerosis, Dysautonomia, Reactive Hypoglycemia, and Arthritis ... just to name a few more.

There are two parts of the article in particular that I would like to point out. Two during which I wept and and two over which I despaired. Wept because I discovered I was not alone. Despaired because instead of what the author suggests how-to-respond, I usually hear the how not-to-respond. Those responses are crushing.


Do Not Invalidate
Sometimes people think that individuals with CFS or FMS are lazy, exaggerating their symptoms, or suffering from a psychiatric condition. They may mistakenly believe that their loved one just needs to push herself a little harder. People with CFS or FMS often feel invalidated when they hear:

“You look good to me.” (Underlying invalidating message: “You don’t look sick, therefore you must be exaggerating or faking.”)

“Oh, I’ve had symptoms like that before.” I get tired like that too.” (Underlying invalidating message: “So, what’s the big deal? Everybody gets tired. Get some rest.”)

“Have you tried (a suggested treatment)?” (Underlying invalidating message: “If you don’t take this remedy or do anything to help yourself, it’s your own fault that you’re still sick.”)

“Are you still sick?” (Underlying, invalidating message: “What’s wrong with you? It’s your fault that you’re still sick.”)
Acknowledge and Validate the Person’s Experience

People with CFS or FMS often face a number of challenges, including:

• Not being taken seriously by their families, friends, employers, and even their doctors and other healthcare providers
• The unpredictability of their illness
• Decreased ability to participate in previous levels of professional, social, educational, and personal activities
• Dependency and a sense of isolation

Many people use denial to deal with a loved one’s chronic illness. Rather than listening, believing, and showing compassion for what the person is going through, they discuss the facts and minimize the severity of the situation.

When you fully acknowledge your loved one’s situation, you are letting him or her know that you truly care, love, and support her. The following tips can help:

Acknowledge the Difficulty: “I can’t imagine how difficult all these changes must be for you.”

Acknowledge Losses, Sadness, and Anger: “I’m so sorry that you had to give up your job.” It must be horrible that you don’t have the strength to continue your education.”

Inquire and Listen With Compassion: When you ask your loved one how they are feeling, they may be feeling ill, tired, achy, or depressed. If you only want to hear that your loved one is feeling good, stop asking how they are feeling. Otherwise, they may sense your expectation, disappointment, disinterest, or inability to understand. Instead you might want to ask: “How are you managing things today?” or “What’s going on?”


Of course, reading the article as a whole would be helpful to understanding the lives of those battling chronic or fatal illness who cross your path.  It helps explain things such as needing extra time to do things or to process things. Just a smidgeon of what life is like, just a glimpse of the struggle, but filled with very practical, very feasible things that family, friends, neighbors, and fellow parishioners can do to help.  To really help.

It is not helpful to tell someone to get over it or to move on, to try harder, or to give examples of how you struggle with forgetting things, dropping things, being tired, etc.

Myriad things in this life are truly exhausting.  Raising children most assuredly is chief amongst them.  But being exhausted and battling true fatigue are as far apart as the grand canyon.  And, as the article points out, exercise is not the answer.  But trying to put words to such debilitating fatigue or pervasive muscular weakness is nearly impossible.  I honestly doubt anyone can understand what you are trying to say unless he or she has experienced it.  

I do believe that, across chronic or fatal illness, exist experiences with transference applicability in regard to understanding.  Pain, for example.  Dealing with chronic pain, of any type, colors your life, sometimes nearly every aspect of your life.  Several times I have had people share about their chronic pain and then immediately dismiss their own suffering by saying it was not as great as mine.  I actually do the same thing, sometimes, noting how my own agony would pale in comparison to that of someone with bone cancer.

Those who talk to me of their pain invalidates it.  I invalidate my own.  And it crushes me.  It is hard, though, not to do this when those around you are essentially encouraging you to do so.  And, I believe, as the article covers, all of this is based in a denial of sorts.  Or, another way to put it, in my opinion, is pretending.

People around you pretend you are well ... or at least better than you are.  They pretend not to see, to hear, to understand.  It is easier for them.  Perhaps it is even, at times at least, easier for you.  You pretend for them.  You pretend for you.  Everyone pretends.  We are all good at not acknowledging and not validating.  Masters at it, really, are we.

My best friend is learning, striving to learn, what I need to hear.  But she has her own life and her own battles, ones she downplays in comparison to mine, yet ones that can be just as brutal to her.   I need her to learn, because I have no one else.  But she needs her own acknowledging and her own validating.  This I know.  So, even as we struggle to accept and face and life we did not expect, we try to help one another ... and often fail.  If only more people around each of us understood how to listen, rather than to fall in the trap of pretending ... or of fixing.

Oh, how we like to fix things!  However, unless that is our specific vocation, with training in a specific area, we should leave the fixing to specialists.  Our fumbling with fixing can also be crushing.

Instead of fixing, listen.  

Instead of fixing, allow.

Allow people to grieve, to suffer, to struggle.

As a conclusion, I would like to add my own two cents, perhaps more bluntly than I have ever written before, to round out the message of the article:  The Living Word is enough.  It. Is. Enough.

I have come to believe that most Christians, even pastors, have forgotten this.  With their mouths and in their doctrine they might confess it to be enough, but they do not really believe it, trust it, walk in it.  All to often, the Christian laments for something more to say, something better.  In the longing for more, for better, the Living Word is sometimes not even shared, as if to do so might somehow be an offense of that is all that is offered.  Because understanding its real and actual power has somehow been lost. The comfort of the Gospel has become an adjective or even a metaphor rather than a verb, the nominative case of the Gospel.

However, I certainly have found it to be enough.  Absolutely enough.  It calms me, soothes me, heals me ... in mind and soul, if not in body.  Not because I believed this from the start.  I mean, I have always treasured the Bible as the Word of God, but I did not know, much less believe, that the Word of God is and can do all that God is and does.  I did not know.  Nor did I believe.  But the power and efficacy of the Living Word is not limited to or by my knowledge and my belief.  The Holy Spirit works by and with and through the Living Word.  He does not work by and with and through our will, our commitment, our understanding.  So, the Living Word is enough.

Read it.

Sing it.

Pray it.

All that God is and can do is given to us, for us!  We do not need to come up with our own answers, our own fixes, our own comforts.  God has provided a very real, very powerful, very effective comfort:  The Gospel.  The message of Christ crucified for us.

I shall speak even more baldly now.  

Some time ago, I had a pastor, more than one actually, tell me that I was too (insert various adjectives for broken and ill here) for any pastor to help me.  None could.  There was no training to deal with someone battling trauma and illness and loss all at once.  Yes, psychologically speaking, pastors are not trained for this.  But healing of the body, mind, and soul lies with God.  Spiritual healing is just as important as psychological healing.  Let me repeat that:  Spiritual healing is just as important as psychological healing.  And pastors are trained in spiritual healing, in the sharing and giving of the Living Word, in the administering of the Sacraments, in speaking the Word of Absolution.  

But, for a while, I believed that pastor, those undershepherds.  I believed that there was no spiritual help for me.  Then someone asked me to do a hymn index for the Pastoral Care Companion.  Always hungry for volunteer work so that I can feel not quite so useless, I happily provided one for him.  However, in working my way through the text, I discovered that there were over two dozen categories in the index that fit me.  Change.  Illness.  Abuse.  Job loss.  Grief.  Doubt.  Sadness.  There was help from the Living Word for me!

I rejoiced.

I wept.

And I struggled with anger ... over being told what was not true.

To me, the best part of the volunteer work was that I got to keep the copy of the Pastoral Care Companion.  So, in addition to hiding in the Psalter and the Christian Book of Concord, I often pull out that small book, chose a category that fits my struggles, and read the promises of the Gospel for me to myself.  I put my name in the prayer provided. I read the passages of Scripture. I look at the hymns.  I give myself the comfort of the Gospel.  Or, rather, the Holy Spirit gives it to me. Through the Living Word.

So, I repeat:  The Living Word is enough.  Do not discount it.  Do not set it aside.  Do not wish you had something more to say, sometime better to say.  Speak it.  Read it.  Pray it.

Listen.

Acknowledge.

Validate.

Allow.

Share the Living Word.

Lord, I believe.  Help my unbelief!