Monday, June 19, 2017

A TALE OF TWO SLIPPERS

Image result for corneal transplantI have explained the process of a cornea transplant to my son as carefully as I can, high-lighting the fact that the procedure will restore vision to my right eye and bypassing the rather queasy details. He nods. He sort of remembers from the last time, but he was little and his father was, unlike now, more able to take care of things.

This, his sister has told me, is Allen's biggest worry: that I will become as incapacitated as his disabled dad. I want him to know that after some recovery time I will be right as rain. No need to worry.

But worry he does. "What will  help you feel better?" he asks me. 

Image result for teacup cats and miniature catsI talk about taking care of the cats and making sure I get hot tea when I need it, but he needs something much more solid. Like many on the autism spectrum, Allen is very concrete in his thinking. The fact that he is considering my feelings shows how far he has come in the last few years.

I think carefully. It needs to be something easily attained, but also related directly to my successful recovery.

Image result for slippers"Slippers," I tell  him. "Nice comfy slippers I can wear while I'm laying around and my eye heals."

"Fine,"he says. "I will get you slippers. Then you'll be okay."

I forget about it for a few days. There is much to be done to provide for Ron's needs as I am on the injured list for a while. Thursday night, Allen heads out the door. "Going to Walmart," he tells me. "I need to get you slippers." It has become a mission for him. Alas, when he returns an hour later he sadly reports that he couldn't find any. "Not nice ones," he says. 

I want to tell him to forget it, but I know that the slippers are now tied up with his confidence that I will recover, so I simply say, "There are other stores." And on Friday, Allen heads out again in search of something I thought would be easy for him to find. But he still comes back empty-handed. Who knew slippers were such a commodity? 

Image result for slippersSaturday morning dawns. We are supposed to attend Wendy's Cancer Free Party and I awaken Allen at 10 am to remind him. I hear him get up and shower, then zoom down the steps and out the door. "We're leaving at 11:30!" I shout, but he is already racing towards his car. By the time my daughter Bonnie arrives to chauffeur us to Roxborough, Allen has not returned. Bonnie texts him but gets no response.

"He knew we were leaving, " I say. I write a note and attach it to the door. I am not really worried about him but I ask him to call us when he gets home. I'm just a little annoyed that he has forgotten about the party. 

It is an hour later and we are helping Wendy set things up when Bonnie's phone dings with a text. She smiles and reads it to me. 

FOUND MOM'S SLIPPERS. SHE'LL BE FINE NOW.

Any annoyance I had at my adult autistic son flies away. The slippers have become such an objective to him that nothing else matters. 

Bonnie gives me a hug. "You have to get better now," she says. "Allen found you slippers!"

My magic slippers are packed and ready.

Image result for magic slippers




Saturday, June 3, 2017

EYE TO EYE

Dear Friend,

Image result for keratoconusWe've been together for almost twenty years, but on June 20, 2017, we will say good-bye forever. I will miss you more than I can possibly express; you have--quite literally--been a part of me. The years between our meeting and our parting have been chaotic. Your constant presence has not only helped me to survive, but to thrive. In addition, the very bestowal of you has allowed me to care for my family and raise my children, to provide for my disabled husband, and to impart the gift of knowledge to many students and teachers. I am beyond grateful for you.

Our close relationship began on February 14, 1998--a most appropriate date--when a surgeon at Wills' Eye Hospital in Philadelphia removed your damaged predecessor from my right eye. A corneal dystrophy called keratoconus had destroyed it and all efforts to save it had come to naught. You, my dear right cornea, were affixed to a narrow circle of tissue with 120 tiny sutures. I came home from the hospital with a bandage over you, a throbbing headache, and a hope that you might provide me with the gift of sight.
Image result for keratoconus
And you did. It took a while for vision of any sort to return; I spent two months with slowly increasing visual acuity.

It took even longer for me to feel that you were truly mine, not a foreigner to my body. For half a year, every blink dragged down over sutures that broke painfully or were removed at the hospital. Even after the last suture was gone, the vague feeling remained that you did not really belong.
Gradually, the early morning notion that there was "something in my eye" dissipated. You became mine.

Image result for rigid contact lensesFor a while, you could tolerate the rigid gas permeable lens and my vision was a pretty miraculous 20/60. It was enough to teach high school English and earn a graduate degree in Reading. And when my husband, Ron, was in a car accident that nearly took his life, you stayed firmly affixed to my eye as we took on two and three jobs to support the family.

By the time we had been together ten years--the usual life of a donor cornea--we were firmly implanted into a doctoral program and you were showing signs of wear. You would no longer wear the RGP with any degree of comfort so we switched back to our thick glasses and moved on. My life was too hectic to deal with the routine of contact lenses anyway, what with caring for Ron and teaching  at three colleges.

Image result for keratoconusWe made it, you and I. I saw--if through a haze--all three offspring graduate college. I received my doctorate in 2011. I knitted my way through Ron's various surgeries and saw well enough to help my daughter make her wedding gown.

Around 2015, you began to protest. The ghost images from you were now full-blown doubles and I had trouble with stairs and certain colors. I could only read on my Kindle set to a large print font. My good friend Dr. Neil Schwartz declared you to be "clinically blind."

Image result for ghost images keratoconusI lived with it for a while, depending heavily on my still good left eye. But in March of 2016, I woke up one morning to a heavy fog that would not lift. I went to Neil, who referred me to a cornea specialist. She sent me to be fitted for a hybrid lens, but that ophthalmologist said you were too far gone. I saw another specialist, who referred me to a retina specialist, who referred me to a neuro-ophthalmologist, who referred me back to Wills'.

Where we first met. We have come full  circle, dear friend.

Image result for gift of sight
And as I prepare for the surgery and the recovery time I will need once you are removed from my eye and another donor cornea takes your place, I want to thank you for all you have allowed me to do. Someone somewhere gave me a very precious gift when they donated their corneas to be used for people like me. In saying "thanks" to you, I am really saying it to that nameless person who not only gave me the gift of sight, but the gift of life.

On June 20, I begin the journey again with a new cornea, a new chance to see and to live and to make meaning from my life. It is a charge I will never take for granted.

So thanks, dear friend. I will never forget you. I pray that I have been, and will continue to be, worthy of such a rare and wonderful gift.

With great gratitude,

Linda

P.S. Dear readers, if you  have not already done so, please consider giving others such as myself the gift of sight by donating your corneas after death. The Eye Bank Association of American can help you understand the process.

http://restoresight.org/cornea-donation/understanding-cornea-donation/

Wednesday, April 19, 2017

SAVING THE CROSS


There is a time for everything,
   and a season for every activity under the heavens:


The little church was on fire. Black smoke billowed from the peaked roof and poured from the windows into the April day. Easter Monday. A day for rejoicing. A day for remembering. And yet, on this day when the faithful flock of the church had so recently sung hymns of praise, they looked on mournfully.

a time to be born and a time to die,
    a time to plant and a time to uproot,
   

Lost. Records of births and deaths and marriages. Pieces of paper crumbling away as the fire scorched it's way through the office. Gone, memories of long ago saints who had prayed in this church that had stood on this spot since 1885.

a time to kill and a time to heal,
    a time to tear down and a time to build,

But the cross was saved. The cross that had stood at the front of the church for decades, beckoning the faithful to reverently bow before it and recall the sacrifice of Jesus, was miraculously saved, carried out by a fireman and set carefully on the lawn.

a time to weep and a time to laugh,
    a time to mourn and a time to dance,
   


Gone were hymnals and Easter Sunday bulletins, prayer books and cards. Gone were paper fans and carpets. Gone, but not forgotten. The celebration of Resurrection Sunday, still so clear in the minds of the saints, still rang out with the joyous news. Christ is Risen! Christ is Risen Indeed!


a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,


    
The cross was saved. Leaning against a tree trunk, scorched and blackened with smoke, the processional cross stood as a sentinel against the blaze that roared for two hours, taking a hundred fire fighters to control its wrath.

a time to search and a time to give up,
    a time to keep and a time to throw away,

Gone were the choir robes, the vestries, the toys in the upstairs nursery. Lost forever were the children's story books and the stuffed animals and the pictures of lions and lambs in a peaceful garden.

a time to tear and a time to mend,
    a time to be silent and a time to speak,


But the cross was saved. It was heavy. It was bruised. But it had survived.

a time to love and a time to hate,
    a time for war and a time for peace.


And this church, too, will survive. It will once again ring with community dinners held  in the basement, hymn sings in the auditorium, and strawberry festivals on the back field. It, like the cross, will be saved.

Because for this small flock, in this small corner of Delaware County, the church is not merely a building of brick and stone. The church is a living, breathing organism, changing when it needs to change. Just as a fire has laid the building low, a spiritual fire can renew and rebuild it.

There is a time for everything,
    and a season for every activity under the heavens


Because despite the loss on this Easter Monday, despite the sadness and the tears and the uncertainty, the cross was saved.


Dedicated my faithful friends at Memorial Presbyterian Church, Boothwyn, PA

Wednesday, March 8, 2017

Voices from the Edge: Better than Zombies


3/4/17

It is 6:30 am on Saturday morning and I am trying not to move, least the cats see me twitch and pounce, demanding breakfast. The door flings upon and Allen barges into the room, loudly proclaiming: "I STOPPED BREATHING LAST NIGHT!!!"

It is early and I am still on the edge of sleep, so I ask the wrong question. "How do you know you stopped breathing?"

This incenses my son. "THAT'S your question?" he asks. "Shouldn't the question be WHY did I stop breathing?"

I try again. "Okay. Why did you stop breathing?"

Image result for breathing exercises"I don't know!" he shouts and slams the door. He stalks into the bathroom where he carries on an argument for twenty minutes with whatever forces were controlling his breathing. It is clear to me that he is now breathing pretty well.

I, on the other hand, am holding my breath. Cats at my heels, I creep downstairs where Ron has been watching some early sports something or other. I click off the TV. We both listen to our son ranting in the shower. Words like "manipulation" and "television" are shouted again and again. Allen slams cabinets as the meltdown continues and the cats jump up on the couch with me, seeking refuge under a blanket.

"This is our child," I say to Ron, "and there is so little we can do." Since a hospitalization five years ago when he had a severe allergic reaction to Tylenol, Allen has abhorred anything to do with doctors or medications. At this moment, I am unpleasantly reminded of Ron's early struggles with bipolar disorder, days when our walls and our furniture suffered.

" I should be good at this by now" I say. "I've had a lot of experience."

Image result for asd"Guess God knows you can handle it," says my husband. It may be true but after twenty years of living with mental illness, I am exhausted.

I know this episode, like all autistic meltdowns, is out of Allen's control. As Ellen Dalmayne writes in her blog "Autism Rights Together," it's never just one thing that causes the total loss of control that characterizes the autistic meltdown. As Allen has gotten older, he has gained more control over these upheavals, but we have not abandoned them altogether.

"Maybe he'll never be able to live alone," I say to Ron. He nods. "Maybe our dream of a little retirement condo is just a dream." He shrugs. We've been altering dreams for years.

Allen, who was labeled early in life as learning disabled, didn't receive the diagnosis of autism, more specifically Asperger's syndrome, until he was a young adult. It made sense, though, and explained some of the nuances about him. According to PsychCentral (2017), meltdowns are caused by faulty sensory perceptions. The overload of stimuli is so great that the brain cannot balance out all the senses. There is also the issue of mental impairment. Like many on the ASD spectrum, Allen is "low normal" on the intelligence quotient scale. He is "high functioning" and manages to hold down a full time job, but processing input overwhelms him.
Image result for autistic meltdown adults
The banging and the shouting have slowed by now and I hear the bathroom door open. I wait. We have come to a pivotal moment in this meltdown. Either Allen will now blame me for his inability to breathe last night or this thing--with a power all its own--will wind itself down. He continues to mutter as he stomps down the hallway and stops at the top of the steps, continuing his litany of complaints. But the tone is quieter. No walls are banged.

As Ron and I wait it out below, I recognize that this is, as Dalmayne says, "not just about a sandwich." Allen has had two other issues this week that were not within his careful control. On Monday, he thought--mistakenly-that his SSA check had been lost. And on Friday, he got a bill for his car insurance with a greater payment than usual due.

My instinct tells me that Allen did not really stop breathing last night, but lack of proper breathing can, indeed, precede a meltdown. He has learned to "stop and breathe", but it is not a technique that is working right now.

Image result for stuffed animalsOne step at a time, Allen enters the living room. "It's all television's fault, you know." I don't know, but I nod anyway. At least it is not my fault. "Television wants to turn us all into stuffed animals." To myself I think, at least that's better than zombies, but I keep my thoughts to myself.

He stalks into the kitchen and opens the freezer. I  hear the crinkling of a wrapper and the door of the microwave open. Allen turns on the kitchen faucet and comes back into the living room. "Going for coffee," he says and leaves without slamming the door.  Progress.

"Why'd he turn the sink on?" asks Ron. I shrug and get up to turn it off.

"No idea, "I say. "Maybe  it drowns out the voices." We both laugh. We have survived another meltdown. But out in the kitchen, feeding the cats who have come out of hiding, I recognize that I do know why he turns on the faucet after a meltdown. It's about control. A meltdown, for a child or an adult, forcefully wrests away carefully contained control. In Allen's case, he spends the work week trying to decipher social cues that are foreign to him. There are many things in his life over which he has no control. Particularly in the throes of a meltdown.


But he can turn on and off the sink.



Image result for running faucet waterCats fed and a cup of tea in hand, I rejoin Ron in the living room. He heaves himself up onto his walker and makes his slow way to the stairs. "Going back to bed," he says. "Too early for a Saturday." And it is too early, but there will be no more sleep for me. I will sit on the couch and wait for Allen's return, listening for repercussions. Eventually I will go up to my office and grade student essays, remaining on high alert while Allen will undoubtedly go back to sleep, the usual aftermath of a meltdown.

At the steps, Ron turns and looks at me. "Before the meds straightened me out, was I this bad?" he asks.

"Worse," I say cheerfully. "Much worse."

He smiles and heads up to bed. "You are good at it, you know."

And I suppose I am. Practice makes perfect. Just then I spy Allen, WaWa coffee cup in hand, coming up the walk. I hurry to the kitchen and turn the faucet back on.

I guess I am pretty good at it.

 Image result for zombie apocalypse