a twisted reality

Dementia twists your reality, breaks your heart, and makes you its hostage INDEFINITELY - and that’s if you’re the caregiver.

One Weary Night

Things imagined one lonely, weary night…

Frost’s thawing wind
Máire’s ancient town
Gothic sanctuaries
Beyond Chant’s panting hart
Iona’s white sands
Grimms’ deepest, darkest woods
Shabbat rest

My family happy, healthy, and safe…

I believe…

…that the Church must bridge the gap between “knowledge without compassion” and “passion without content.”

From “A New Kind of Christian” by Brian McLaren

The only kinds of sin we want to focus on as modern Christians are isolated individual sins committed by isolated individual monads: lying, having an abortion, indulging in pornography, taking drugs, saying naughty words. Not to minimize those things in any way, but that far short of a fully biblical understanding of sin, and it leads to dangerous truncations of justice and compassion…. Let’s say we’ve got a black teenager in the inner city who just swiped the purse of a white secretary to get money for his drug habit. That’s definitely a sin right? OK. A new kind of Christian will agree, but he won’t stop there. He’ll also want to look at the ways that the woman who is victimized by his crim actually contributes to the system that produces desperate teenage drug addicts. It’s a systems thing. . .

“What has that woman ever done to that drug addict?”

. . .”That’s exactly my point, Reverend Poole. She hasn’t done anything. Ten years ago this violent drug addict was a kid, stuck in the city with nothing to do and not much hope for the future. He was just a kid, Dan, a lot like me growing up in Port Maria or Kingston or Elizabeth. To use Jesus’ words, the boy was her neighbor, and he was in need, and she succeeded in crossing to the other side of the road for all of her life. She has succeeded in being like the priest and Levite in Jesus’ parable of the Good Samaritan. Everybody knows the robber is bad– but doesn’t Jesus also imply an indictment on the priest and Levite? . . .

To be truly good means more than not robbing people. To be truly good means more than being righteously religious. To be truly good means being a good neighbor. And to be a good neighbor means recognizing that there are ultimately no strangers. Everybody is my neighbor! Everybody is my brother! There are no isolated monads wounded on the other side of the street! We’re all connected!

Seriously, Dan, modern Christianity has too often acted as if the only kind of righteousness that mattered was the kind of righteousness of the scribes and Pharisees — the righteousness of nice, clean, legalistic monads who managed to stay disconnected and disinfected on the other side of the street. Maybe that’s better than swiping pocketbooks; I don’t know.

Through the cold, dark Christian world

My Dad has (and by extension the rest of us have) had a very tumultuous transition into exploring new daytime care options for him. He was very happy when Mom, Grandma and I spent the day with him; I was his main caregiver between January and May, while Mom and Grandma filled in for me when I absolutely had to be elsewhere during the day. But now that I’ve started my full-time internship we’ve had to find other options, so we tried a number of things: A community day program for seniors; a ‘volunteer’ position with a local NGO which frequently accepts volunteers with one kind of disability or another; in-home care from a male church friend whose job is to provide this type of service to sick and shut-in seniors.

My brother was really amazing during this process: He took his last two vacation days for the rest of the summer to look after Dad last Thursday and Friday so that Mom and I wouldn’t have to miss even more work, and so that someone could accompany Dad to the two community programs I mentioned above. However, all three options (including the in-home caregiver who was with Dad yesterday) dragged him through a cocktail of emotions including frustration, fear, panic, anger, rage, paranoia, hurt, grief, depression, aggravation, humiliation, shame, and anxiety. Times like these, when it feels like he’s on an emotional rollercoaster, his expressed emotions are extreme; the rest of us are usually the immediate targets of his feelings, and we become totally consumed with and quickly drained by our effort to calm the storms. This has been our existence since last Thursday.

What I’ve been learning in talking about our struggles and needs with people who haven’t experienced any kind of long-term illness is that some of them seem to expect quick fixes would help us, not knowing that there is no such thing as a quick fix for managing a long-term illness. Also, they don’t seem to notice how draining it is to be around certain long-term illnesses (that goes for the person who’s living with the illness as well as his/her caregivers). And while they can easily go on vacation and leave their troubles behind, people with family members who are suffering with long-term illnesses can never get away from it or leave it behind - there are no such things as vacations or leisure time for some of us. It’s been four years since my family has had a vacation where we weren’t constantly attending to the physical and emotional demands of dementia. I know that some of you can understand what this feels like.

So all of us - my Mom, my brother, and I - and also my Dad - are very much at the end of our ropes, our energy reserves, and our patience with this disease. Dad despairs all too often over his disability, while the rest of us struggle to have patience in spite of short fuses; we also struggle against exhaustion but we keep going because we know we’re the only safeguard against Dad ending up in a home, an option that’s out of the question as it would absolutely ruin him mentally and emotionally.

On the bright side, a retired woman who lives in my parents’ condo building (just down the hall, actually) has kindly offered to look after Dad as much and as often as we might need her help. We cautiously want to take her up on her offer, although with her being new to the caregiver role in Dad’s experience, he may have negative reactions to the change. If you would, please pray that he is at peace with her in the role of caregiver and that he adjusts to her without feeling humiliation, anxiety or anger. Her husband is also sick with a very different long-term illness, so they can relate to Dad to a degree. Apparently he and Dad have gotten along well together when they’ve talked, but neither of them is able to initiate social contact, so it will be up to this lady to arrange it for them during the day.

The best part about my conversation with her was not her offer of help (though that was the second-best part); the best part was her insistence that her help was a matter of Christian love. To me it begged the question, Why has this very basic Biblical concept of Christian love not been expressed by the church leadership or most of the church family towards my parents? Whatever the answer, this wonderful lady is a brilliant light in our dark, cold Christian world. Those of us who call ourselves Christians must daily aspire to be like her (and ultimately like Christ) in order to attain the standard Jesus spoke about so often in his teaching.

Ironman Shopathon

I’m more exhausted than I’ve been in a long time. Shopping does that to me. Since high school I’ve lost my taste for it, actually. During family visits to the mall you’d find me at the benches with a book, sitting beside all those husbands with their newspapers and long, tired faces. Boy do I know how they feel. About ten minutes into a store my eyes have glazed over and I begin muttering something about collapsing from exhaustion if I don’t reach the Orange Julius. (Good old Whose Line is it Anyway; anyone remember that skit?)

Anyway, when my husband and I met we had no idea that we’d have a love-hate relationship with shopping - he loved it, and I hated it. To his dismay, on one of our first ‘dates’ at the mall, I began to wilt while passing through WalMart - before even entering the main mall area.

I mentioned to Scott today that shopping ought to be an endurance sport. You know, like the Ironman Triathlon? Well, I think there should be an Ironman Shopathon. Scott thinks I’d collapse three steps past the start line. And he’s right.

Your Return: Pornography in Verse

In light of recent comments and support regarding my experience as a victim of porn addiction, I wanted to share the following poem. I wrote it in 2003 from the perspective of a woman whose partner is interacting with pornographic material. It was written for and shared with my now ex-boyfriend in an attempt to show just how painful his addiction was to me, however he refused to accept that he was the cause of my pain.

The poem might be difficult to read, as the imagery is somewhat graphic. It reflects exactly how I felt at the time when I was dealing with these issues in my ex’s life. Maybe someone here can identify in one way or another… I would value your comments.

YOUR RETURN

Her figure draws your will
Suggestive eyes invite you
To lift her from the image
Into the sanctuary
The private place devised and blessed by God
Meant for you and me alone

The light of your devotion
Promised once to me
Drowns in the muddy blackness of her sordid song
As you tear away from me to lead her in

I’m suddenly alone
A hollow wind moans through this darkened place
Your absence from my side weighs heavy
As I entreat you to return to me

I feel your thirst for her
I sense the pleasure you desire from her
The pleasure I was meant to give one day

Confused, I fall to my knees
You swallow her poison
I am struck by the blow
You ask her for more
I crash to the ground
You savour her form
Deception pins me down

Who intrudes on my heart?
Who violates my trust?

I beg
“Please, don’t hurt me”
I scream as treachery rips into me
Trespassing on the private sphere I once entrusted to your care
I struggle to get up
I cannot
You embrace the intruder
Searing pain assaults me again
And again

I call your name
But you have left my side
My cherished friend has left my side
For another

In the dimness I recognize my heart
Torn and bleeding at my feet
I am weak and bruised
Defiled
And sorrow chills me to the bone
“Jesus, cry these tears with me!”

There is nothing left to do
Trembling
I fear your return to me

© DMC, September 30, 2003

Related Posts:

• May ‘08 Click here for porn
• June ‘07 Skeletons in the Closet
• November ‘05 Relationships & Spiritual Discernment
• November ‘05 Thank you!
• October ‘05 How can I describe this?
• October ‘05 Women & Porn: On the losing side of things
• August ‘05 A Husband Worth Waiting For

TCK Good-byes

Through several discussions with friends and family I’ve come to discover another way in which the TCK profile has surfaced yet again in the way I deal with life, or more to the point in the way I deal with change. Change is one of the few constants in a TCK’s life, and my experience was no different. My geographical location has changed about 12 times in 28 years. Our proximity to my extended family has changed from being across an ocean from them to being just down the street. I have attended 13 schools, and changed church ‘membership’ 11 times (not to mention the countless churches I have visited through the years). I made many friends and lost most of them again along the way. Losing my Austrian friends at the age of 10 stripped me of a huge support system, making me feel extremely vulnerable and alone in my new Canadian neighborhood.

Losing one group of friends after another in each successive move was heart-wrenching (except for the rare case in which my ‘friends’ turned out not to be real friends after all and kind of dropped me when they found someone ‘cooler’ to hang out with…). So how on earth does a vulnerable child with struggling self-confidence deal with repeated losses such as these?

You learn to let go, and let go ASAP.

I was just telling my cousin last night that every time I had to say good-bye to my friends, my house, my school, church, and neighborhood I felt like they immediately became shadows of my past: Old and passing worlds that were preserved like time capsules in my mind. That’s still all they are to me now… slowly fading shadows of both happy and difficult memories. And the only world I’ve ever really wanted to return to was Austria… that place somehow managed to stamp its permanence onto my heart forever.

What about people? If past worlds become shadows do passing friendships become as ghosts? Well… pretty much. That is, unless some small seed of loyalty compels them to do the work required to maintain a friendship despite geographical distance. Even in the age of the internet most people do not walk down that road with me.

As I mentioned in a previous post, friendships mean the world to me. Having lost so many I know just how valuable they are and so I develop a deep, unwavering loyalty to them. And when the time comes (as it so often does) that we must say good-bye I’ve learned to grieve as deeply and quickly as possible, release the friendship to join the other shadows of my past, and move on. Given the number of good-byes in a typical TCK’s life it’s only natural that one would want to move on quickly and efficiently.

What benefits has this survival technique given to many TCKs? We can adapt to change in a flash. Personally, I know how to appreciate the people who are in my life at the moment, and I know how to move on when they’re gone. I make the most of my friendships when they’re around, and I also know how to thrive when I’m alone. I’m glad when people are in my life, but I’m also not surprised when they disappear. That said, I also never forget the faces of those who showed kindness and loyalty to me while they were in my life, and they remain in my heart forever.

On a whole, these TCK good-byes affect my views of the past, present, and future. I’ve found myself chasing my past… my childhood in Austria, wanting to return to that place that was so fun, safe, and care-free. I find myself living in the moment, appreciating the people, the places, and all the little things that may never cross my path again. And when I think of the future I see the whole world open to me, I see countless faces yet to meet and countless places yet to live. And with simultaneous grief and excitement I know there will yet be countless good-byes.

Emperor Julian’s Atheism

During the fourth century AD Emperor Julian wrote of the Christians while reflecting on his own attempts to reinvigorate an ancient religion across the land:

Atheism [i.e. Christian faith] has been specially advanced through the loving service rendered to strangers, and through their care for the burial of the dead. It is a scandal that there is not a single Jew who is a beggar, and that the godless Galilaeans care not only for their own poor but for ours as well; while those who belong to us look in vain for the help that we should render them. (Neill, 1986, p. 37-38 )

Neill, S. (1986). A history of Christian missions (Rev. ed.). New York: Penguin Books.

Acculturate? Transculturate? Hermitize?

I recently heard the term “transculturate” - like “acculturate” it relates to the uptake of cultural features when one moves into a new culture, but it also implies more of a balanced bi-directional relationship between the new arrival and his/her environment.

In my years-long process of searching for ways to resolve my cultural identity conundrum I’ve wrestled with the idea of acculturating. The process of cultural identity formation was especially confusing for me as it coincided with adolescent identity issues. There were moments when I tried to forget my past entirely (i.e. acculturate/assimilate into Canadian culture) in an effort to gain social acceptance. But there were also times in which I went to the other extreme and wished I could separate myself entirely (i.e. marginalize/hermitize) from Canadian culture. I finally realized that acculturating, to me, meant becoming like my Canadian peers both inside and out, which would make me feel as if I were letting go of my childhood overseas - not my preferred choice.

So this ‘transculturate’ idea makes sense to me and feels more balanced. In fact it positions me (the hidden immigrant) not as a vulnerable subject labouring to swim upstream against the powerful influence of my passport culture, but rather as a subject with a firm footing in the midst of my surrounding culture and the autonomy to be selective about the features of my past and present cultures that contribute to my cultural identity. It also reminds me to be more intentional about appreciating and directing this process in every-day life.