Silence, secrets and shame

Having just been through this holiday season, I am so struck by the importance of ChosenFamilies.org.  The reality is that many families are touched by hidden disabilities.  The sad thing is that most live in utter silence about their challenges, often even within their own family structure.  As I reflected on this reality in recent days, I was reminded of something I continue to ponder. 

What are the things we are silent or secretive about?  We tend to be silent and secretive about things for which we feel ashamed – areas of struggle or sin that leave us feeling defeated.

When I went through cancer treatment several years ago I had this lingering negative feeling I could not put my finger on.  I tried a variety of ways to shake it to no avail.  Finally, one morning in my quiet time I just asked the Lord about this lingering feeling hanging over me.  “Lord, what IS this?”  He spoke promptly: “Shame.”

As soon as He said it I realized that I had no reason to feel ashamed.  I was sick.  I was in treatment.  My baldness was nothing for which to feel ashamed.  It was simply an outward evidence of the fact that I was sick and fighting this dreaded disease.  Upon this realization, the negative feeling lifted.  I knew it was founded in a lie – I had no reason for shame.  The power of the negative feeling over me was defeated by the reality of the truth.

Many families touched by hidden disability live in silence, feeling it is not safe or wise to share their burden.  While it is important to use discretion and good judgment in sharing hidden disabilities, when we move into complete silence about them, we are at risk.  As a result, we often live with that same unspoken heaviness.  It is indirect but often based in the subtle lie that we have something for which to feel ashamed.  And we do not.  We are dealing with disability and illness.  These are not grounds for shame.  They are cause for brokenness and dependence on the Father – which is exactly where He wants all of us to live anyway.

As we move into 2011, ChosenFamilies.org is committed to speak into the silence that hovers over so many families.  We are committed to be a light to shine into that dark place and speak words of hope and encouragement.

Elevators and Intimacy

“You made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You….” Jeremiah 32:17

What is He asking me to believe? To ask?

This week we went on a serendipitous date. Unscheduled, relaxed, with conversation flowing both ways – blissfully normal, and I loved it. By the next evening, my man’s attention and emotions were too crowded for relationship, and I felt alone. A-gain.

It hurts when I slam into the barrier that limits how close emotionally I can be with my mate sometimes. That is a human condition, I know, and certainly a marital one, too. Mars/Venus, I get all that. But emotional limitations in relationship with a loved one who has bipolar disorder go beyond the usual. Believe me. The closest description I’ve heard was the loneliness my mama expressed when my dad’s mind began to slip and fail him, and them. And often he could not discern it himself. A limb amputation would not have produced that degree of separation, loss, and loneliness! Dad looked fine on the outside, but he could no longer engage in life as a full fledged mental or emotional partner with her. In some ways she had to do the thinking for both of them. Nor could he process the complexities of day to day emotional issues. His memory and perception was unreliable as well, so she carried their memories, in context, alone.

I totally get that. Always in the back of my very experienced mind is the awareness that despite his desire, or mine, my man often isn’t able to drive emotionally on the two-way street called Intimacy. It’s hard enough for him to process his own thoughts and feelings, so there’s just not enough room for my car to be on the road at the same time…and when I bruise my head and heart by banging against these unwelcome limitations, I feel lonely and hurt. As my kids say, “Just saying.”

I’m full of ways to describe this :) . For instance, my bipolar man is like an elevator. The elevator looks on the outside like it goes all the way up to the penthouse suite, which I imagine to be very private and wonderful, with plenty of room for the both of us. After all, he’s so bright, witty, insightful, accomplished. But when the elevator doors open, I find there is actually no room in there for me to ride up! His elevator is crammed full with so many emotions and thoughts of all shapes and sizes jumbled together, pushing, shoving, actually spilling out when the doors open. Sometimes there are only one or two Very Large Emotions, magnified, amplified, demanding. Either way, no matter how hard I push, squeeze, slide, smush, there is not enough room for me – for my emotions, ideas, relationship. Sigh. I miss being in my mate’s elevator, riding up to the two way intimacy that I imagine can be sustained in other marriages, where there is consistent room for both individuals’ minds, will, and emotions.

So, yes, I do keep asking God to do the impossible – make a way for this to work, for even us. It doesn’t hurt to ask. Together we pray “Jesus, we don’t know the limits of this disorder or the limits of what You will do for us, but we are asking You to do as much as will bring You glory.” Sometimes I rest from asking. And that’s OK too. God doesn’t forget the desire of my heart. His relational – emotional elevator has plenty of room for all that I feel, think, desire! And every now and then He provides sweet close common moments with my man…and I can see why God said marriage was a picture of heaven!

Often lonely but always loved,

Joan

Grateful for my man

Today I celebrate 19 years married to my man, Bill Royce.  We started out like most, way skinnier, blissfully in love and feeling so blessed to have found each other.  We have experienced what the marriage vows mention: sickness and health, poverty and wealth ….

I have heard that over 80% of marriages dealing with disability end in divorce.  I have never heard the source of that statistic but it is prevalent in disability circles.  We have had a few hard days as we have dealt with the challenges of our family life.  But today, I am grateful for 19 years with my man.  I thank God for His grace that has carried us through together, hand in hand, side by side.

Father, I thank you today for Bill.

Teenage Push-back

Sometimes we don’t know when it is the autism talking or the teenage hormones. We don’t have a neurotypical child to compare him to, so autism usually gets the blame. Nevertheless, our conversation today went like this.

Daniel: (Angrily) Why did you put all this on my chores sheet?
Me: What specifically are you talking about?
D: All THIS.
Me: What item do you have a problem with?
D: THIS. “Christmas Day Church service.” I don’t WANT to go! (He usually goes to Youth Group while we go to “big church.”)
Me: We are going to be in CA with Grandma, and it’s important to her that we go as a family to church together, and that’s what we are going to do.
D: I don’t CARE. I’m NOT GOING, and that’s FINAL. I’ll be BORED.
Me: So what? You will only be bored for an hour, and then it will be over, and we’ll go out to lunch afterward.
D: I don’t WANT to be bored for an hour, I’m NOT GOING.
Me (motherly, conversational tone): Listen to me, are you listening? Listen to me. You belong to a FAMILY. Sometimes we have to do things we don’t want to do because someone else in the family wants to do something. We do things for you ALL THE TIME that we don’t want to do, because you are a part of our FAMILY and we love you. We love Grandma, and we are going to church with her on Christmas Day, because it’s important to HER.
D (not convinced): There must be something else I can do instead!
Me (realizing that reason and family ties strategy is not working): I can’t make you go, but I can make you miserable until you change your mind. For instance, if you are not willing to do something someone else wants to do, then you are going to have to give up something YOU want to do, like driving by the Price is Right studio. We just won’t do that.
D: OK, OK, FINE, I CHANGED MY MIND, I’LL GO!!
Me (thankful I knew how to get to him): Great, now that we’re done with this conversation, you can go.

Yes, Lord, I blew it by laying the church thing at Grandma’s door instead of taking ownership that it is something WE want to do too, to be in Your house for Jesus’ birthday celebration. Keep working on me, please! Amen.

Annual Family Photo

Yes, it’s that time of year again, and it does get a little easier with a 16 year-old compared to when he was 4 and in the throws of a full-fledged autistic tantrum. For some reason, natural smiles are harder to elicit from the teenager, presenting more like a painful grimace, even when trying to get him to say “puppies.” And “put your arm around your Mom”? Forget it.

But we experienced a new phenomenon afterward when Jim and I were selecting “the” photo. Daniel, who usually sits at a distance, patiently or impatiently waiting for us to finish, pulled up a chair and sat with us. And started commenting, “I don’t like that one, I’m not smiling enough,” etc. WOW! We affirmed his comments by saying, “OK, that one’s out” and complimenting him on his participation. It was great. And my husband was the one who observed this was a first for us.

It was good. Thank you, God, for meeting us right where we live.

Events and Elephants

To whom it may concern, if anyone, we just had a sweet Thanksgiving event, uneventfully, with extended family. We planned, prayed, set boundaries, escape plans…Camp David should be so prepared. After a decade of alienation, the reunion was peaceful and eventually fun. One night we played a game called “Taboo” and laughed at the ridiculous impossibility of it. Have you ever played it? The object of the game is for you to have your team guess the word on your card without using the word itself, or the five additional words listed on the card. For instance, just try to get someone to guess the word “elephant” without saying “animal, large, gray, Africa, trunk.”

But there was a more serious Taboo game going on this Thanksgiving. It started years ago when our mental health diagnosis was given. Unlike other kinds of illnesses, a mental health diagnosis can splinter a family tree, not unlike a bolt of lightening. Certain branches don’t want to know about it. Or don’t approve or agree. Others fear it. So, to switch analogies, the diagnosis became the enormous elephant in our room…something so large it was awkwardly awful to act like it was not there. So many words were spoken, heartless or harsh, said in ignorance or arrogance, or both….

The one who has knowledge uses words with restraint, and whoever has understanding is even-tempered. Even fools are thought wise if they keep silent, and discerning if they hold their tongues. Proverbs 17:27, 28

It’s an understatement to say we were not very good at the taboo rules at first. We stumbled around trying to avoid using words indicating doctor visits, medications, side effects, costs, moods, bipolar, mental illness, etc. at a time when that dominated our landscape. That’s why we had to wait to attempt to reunite with that precious splintered family tree branch…at least until our own understanding and knowledge increased. This year we didn’t even mention the elephant! In fact, we’re so used to the elephant ourselves, we can sometimes (not always) accommodate those who can’t admit it exists…this time for two whole days!

It was OK too that there is one member of our family who still carries the pain of words past spoken, who still feels the wrongness of abandonment, who is plain spoken about the reality of elephants…

By wisdom a house is built, and through understanding it is established; through knowledge its rooms are filled with rare and beautiful treasures. Prov 24: 3-4

Can I just say how blessed it is to be with the parts of our family who DO share our mental health journey? The ease with them is divine companionship. “So, how are you feeling these days? Any side effects bugging you? Do you like your doctor? What helps?” Practical hints were shared like treasures. Jokes bubbled up. Unbelievably hard moments well-aged came out as hilarious side-splitting stories…I mean, who else would believe us??
I’m sure some of the laughter is relief that we have all lived to tell about it.

…do not let wisdom and understanding out of your sight, preserve sound judgment and discretion; they will be life for you… blessed are those who find wisdom, those who gain understanding, for she is more profitable than silver and yields better returns than gold. Prov 3:21-22, Prov 3:13-14

Joyfully, Joan

Breath of Heaven

I am listening to the song by Amy Grant called “Breath of Heaven” — Mary’s song. To be honest, I never gave much thought to Mary until my son became ill. In recent years I have had a new understanding of Mary. She was given the task of mothering the Son of God. Wow. I feel challenged at times mothering this special son God has given me. Imagine how Mary must have felt.

December is particularly hard. These tend to be dark days for my son, and for many with Bipolar Disorder or Depression. As the days become shorter, and light becomes a treasure, moods can become darker.

He becomes more withdrawn and brooding. He goes to school, does his homework, but wants little to do with anything else. Yesterday it was effortful just to get him to shower so we could go buy our Christmas tree.

It is really sad for him. But it is also sad for the family. I have tried many things over the years to brighten the advent season leading up to Christmas.

I keep trying but have not found an answer to the darkness that tends to settle over our home in this season.

So I hear this song with different ears than perhaps others.

… Holy Father, You have come and chosen me now to carry your son. (No less true of those of us chosen to mother a special child…)
I am waiting in a silent prayer, (often breathed moment by moment) I am frightened by the load I bear, (at times the load of mothering a child with bipolar is frightening…)
In a world as cold as stone, must I walk this path alone, (who can I share this with when those around me are happily experiencing their Christmas season?)
be with me now, be with me now.

Breath of Heaven, hold me together, be forever near me, Breath of Heaven.
Breath of Heaven, lighten my darkness, pour over me your holiness, for you are Holy, Breath of Heaven.

Do you wonder as you watch my face, if a wiser one should have had my place (at times I feel the same way),
But I offer all I am, for the mercy of Your plan (I submit my heart and life to You to mother this child you have given),
Help me be strong, help me be, help me (only by Your grace and strength can I fulfill this mission).

Breath of Heaven, hold me together, be forever near me, Breath of Heaven.
Breath of Heaven, lighten my darkness, pour over me your holiness, for you are Holy.

Breath of Heaven. Breath of Heaven. Breath of Heaven.

So for all those of us who live in families that can be dark in this season, I pray we will embrace the presence of the Breath of Heaven Himself, Immanuel, God with us, to lighten our darkness. I pray for wisdom for us to have creative ideas to lighten the darkness.

I pray for our loved ones who live in significant darkness in this season. I pray the Breath of Heaven Himself will hover over them and breath His grace into their hearts.

I thank God for Immanuel, God with us, the very Breath of Heaven.

Pain and Porkchops

Seems like a lot of pain, without much gain sometimes, comparatively speaking. Not that comparing is ever wise, but it happens. I’m glad you are reading today because perhaps you too can understand something that encouraged me yesterday.

So, I was standing in the meat section, trying to sift my pain through what I hoped would be the less painful shape of truths, while feeling a huge disconnect between the decision for pork chops and the next best way to connect to my emotionally challenged husband. My hurting heart kept interrupting my shopping. Which is not very efficient. I will be forever grateful God does not display my thoughts for public view. That’ll probably come at some end time judgment, but for now, I need the privacy! “…dinner…those pork chops look fresh today….O U C H…life is really HURTING me right now Jesus……and I know there’s no answer to this, but why does it keep having to cycle like this? It’s so hard………my pork chops always come out dry, but I’m tired of chicken……..Jesus, help me!……that is a good price……will things ever change? remind me what my hope is?…………my daughter likes pork chops…………..I know this is my old thinking, but because I can’t see You changing things right now, it feels like my pain doesn’t matter to You….”

And believe it or not, right in that mid-thought, a small man came up beside me, saying gently, “Excuse me.” When I turned to face him, his aged face was smiling, but you never can tell these days, so I kind of braced for the unknown. (Though I do have a heart for older people.) I just remember he had the most sky blue eyes, and slightly graying wavy hair. He seemed foreign. Once he had my attention, he said clearly, with heavy Spanish accent, “Jesus Christ loves you.” And he followed it with a nod, waiting for me to convey that I understood his English. When I said “thank you,” (more out of reflex than anything else) he went on his way. 

I was stunned, as in, I think a stun gun would’ve had a similar effect. I hear those words regularly, but never in Food Lion’s meat section. And not from a stranger (usually). I felt like he had literally read my thoughts, and at first that was what unnerved me. It took me a minute to get past that, and take in his actual message — that Jesus was looking at my pain right there by the pork chops, it DID matter to Him, and He sent someone to speak that truth in simple English.

I can’t tell you how much I needed to hear that Jesus Christ loves me! I’m amazed that He did that. “Mercy drops round us are falling, but for the showers we plead….” 

Of course, by the time I had gathered my wits, to REALLY thank him, I could not find him in any aisle.

Whoever is reading this right now, I am praying Jesus will privately or publically perfectly strengthen your heart in the places it is the most strained right now.