Madeleine’s Notes

The summer is off to a sweet start.

My sister, Mary (whom many of you know), just completed a wonderful visit. She was a great help to me and spent good time with Gary. Mary thought I should share some of the many wonderful things and real pleasures Gary and I enjoy, despite his severe disability. Our life together -- which might appear grim and depressing from the outside -- is rich in books and music, children and grandchildren, politics and friendship. (We have our grim moments, of course, but they are not the norm.)

Weather and support permitting, we get out pretty regularly. The picture on Gary’s blog profile was taken at Topanga State Park, where we picnicked with Elizabeth and her kids and Katy and her kids and David and Linnea Hillesland, Kate’s in-laws. A couple of weeks ago we visited our good friends Kathryn and Ali at their home in Valley Village. (Margaret was in town and accompanied us.) Just yesterday we went to Roxbury Park to test out the new manual wheelchair, a tilt-in-space I bought on eBay, which Joseph, our long-term caregiver, has outfitted with a vent tray and a basket for the battery.

Our life, while strenuous, is rich in blessings:

Gary’s health is stable and his recent labs all clear. He is not at death’s door. He is not in pain. He gets massage every week and extensive range-of-motion exercises every day.

He is perfectly alert and aware and engaged. He listens to the New York Times and various books and magazines on his iPod every day. (If I could figure out how to do it, I would post the long and impressive list of what he's read.) Sports and movies on TV provide hours of pleasure. His good friend and colleague, Pastor John Rollefson, visits him every week.

The grandkids visit often and lean up against him and pet him and watch children's shows on his big TV.

The new baby (Madeleine!) is a great joy for all of us. We took Gary to the hospital to visit her the day after she was born. They looked into each other’s eyes and bonded seriously.

Margaret and Karl have promised a cousin for little Madeleine in late December.

The Brainmaster technology offers hope—even though it’s a great deal of work, demands technological patience, and the outcome is far from certain. (I’ll share more about that in the days to come, but for now it’s an EEG system that reads brain waves that just might let Gary communicate, perhaps even write, again.)

Only the Lord knows what tomorrow will bring, or next week or next month or next year. (That's hardly a new thought, but it's gained meaning for us in the past three years.) Meanwhile, we have learned patience and grown in love and gratitude for the gifts of God and for the people of God.

M

Getting out of Bed

From Bed to Chair and Back to Bed:

Our Molift was bought with donor help as insurance refused to fund this essential piece of equipment. The lift can go with us to the doctor’s office or on an overnight trip. (See http://www.moliftinc.com/prod-smart.shtml)

We share this tiresome set of instructions as a sample of the crazy effort and detailed care required for a simplest escape from the bedroom to the living room.

OUT OF BED, ONTO MOLIFT:
Position sling under Gary.
Tie circuit to sling loop.
Make sure external battery is securely attached to vent.
Disconnect ventilator from house current so it’s running on external battery.
Disconnect oxygen from vent and reattach circuit securely to vent.
Place oxygen connector in plastic bag.
Turn off oxygen concentrator.
Position Molift under bed; spread lift legs.
Attach loops to lift: purple and green.
Position arms and watch hands carefully.
Attach catheter bag to sling.
Elevate and lift away, placing Gary’s legs on either side of lift mast.
When he clears the bed, close lift legs and put wooden shelf on lift legs.
Place vent on wooden shelf.
Place external battery on wooden shelf.
Move to destination—slowly.

OFF MOLIFT, ONTO CHAIR:
Fold back carpets
Recline chair half-way.
Move vent and battery from wooden shelf to chair/floor by recliner.
Remove wooden shelf. Spread lift legs.
Position lift around chair.
Lower Gary onto chair—stopping mechanism before it hits Gary.
Remove loops from lift.
Remove cath bag from lift and attach to chair—checking flow.
Remove lift & close legs.
Connect vent to house current.
Check vent settings.
Check connections: vent to cord, cord to wall; battery to vent, all circuit connections.
Adjust chair and Gary for comfort: hips, head, hands and feet.
Move lift back into closet.
Replace carpets.

OFF CHAIR, ONTO LIFT:
Fold back carpets.
Position lift, spreading legs.
Disconnect vent from house current.
Attach loops, purple and green.
Check circuit tie—sufficient slack on both ends (tie to trach, tie to vent). Attach cath bag.
Position arms and watch hands.
Raise Gary.
Pull back lift. Position wooden shelf.
Put vent and battery on shelf.
Back to bedroom (slowly).

OFF LIFT, ONTO BED:
Move lift into position between beds.
Remove vent and battery, setting vent on floor or little table, depending on slack.
Remove wooden shelf.
Position lift under bed, spreading legs somewhat for stability.
Lower Gary—stopping mechanism before it hits Gary in the head.
Remove loops. Remove cath bag.
Move lift out of the way.
Reconnect vent to house current, checking cord both to wall and vent.
Check vent settings.
Turn on oxygen concentrator.
Reattach oxygen line to circuit.
Observe that GREEN light is on, confirming that the vent is drawing on house current.
Make certain that external battery is connected to the front of the vent, charging.

Notes on Healing from January 2006

Ministry of Healing

As I prepare my sermon for this last Sunday in January, as I read and research the texts treating Jesus’ ministry of healing, I think, of course, about my own disease and the healing I hope for myself at Jesus’ hands. I think also of the many, many sick people I have visited as a pastor over the years. And I think of the visits I may have foolishly put off or failed to make because other things seemed more important or because I didn’t think my visit would be useful.

Many people have visited me in the past months. Many pastor friends and colleagues have come to the hospital or called and of course I appreciate their concern, but it is the lay visits that stand out in my mind, the visits by people who are simply “called” by the Spirit to bring comfort to the sick.

Indeed, visiting the sick, the ministry of healing, traditionally belongs to all the baptized, to the priesthood of all believers. Everybody is instructed to participate, to bring comfort and to pray with sick people. Everybody has the skill, the talent, the gift. What I need to hear, however wise or educated or old or experienced I am, can come from the mouth of the smallest child: God loves you. I love you. God wants you to be well. I want you to be well.

Words aren’t even necessary. The touch of a hand, the look of concern, the time spent getting to the hospital, the care taken. All these communicate. A prayer offered, silent or aloud, a song or hymn, a few moments of Bible reading. These “do the trick” of ministry, the ministry of the baptized.

Most pastors get a few weeks’ special training in a chaplaincy setting. They may take a class, read some books, go to a workshop on visitation. But it’s not at all the same as what I have learned the past months from you, from the priesthood of believers at Mount Olive as you have ministered to me!

Visiting the sick is not about expertise. Indeed, in the hospital I lay surrounded by “expert” medical people who were not doing much good at all. It’s not about knowledge or saying the right thing. It’s love in action. It’s faithful community. It’s pure Christian action.

So it’s not just about hospitals either. Lying immobile and dependent in my bed I have come better to understand the homebound and the shut-ins in my care through the years. (I hope they have found the consolation in lay visits that I have found!) I thought I had to bring wisdom and answers, expert help or inspiration. I didn’t understand that just “hanging out,” just giving a bit of time, just sitting quietly, was all that was required. Getting involved, offering to help, bringing a book.

Hospitals are busy places. Shut-ins live in a relatively boring, helpless and hopeless space. Shut-ins may get out sometimes. (I didn’t really understand that until recently.) But only with great effort and support, and often at considerable cost and discomfort. Shut-ins have embarrassing bathroom problems and hygiene problems and dressing and grooming problems. Mostly they suffer from a terrible sense of loss and marginalization.

Visits make a wonderful difference. We must remember this as a church community and learn a lasting lesson.

Thanks and blessings,
Pastor Gary