What's Next? Who Knows

I'm back.  I wish I could tell you that I'm coping just fine with things lately, but I really shouldn't lie.  I'm not.  Anxiety is wreaking havoc on my mind and body. 
 
I hope you can forgive me for writing a gloom and doom post before I'm even in a place where gloom and doom is truly appropriate.  I can still see.  Nothing much has changed.  Yet.

No, my vision hasn't gotten any worse.  The floaters are a constant annoyance, but my central vision is still good, except for a bit of fog now and then, but if blink rapidly, I can clear it.  Sort of.  I do notice issues with reading on and off, and each time I do, a flood of anxiety washes over me. 

I've been doing a lot of reading and research; as one patient of AMD ironically and yet positively puts it, 'this is the best time in the world to go blind' because there are so many low vision aids on the market.  Thirty years ago there was not much more available to the afflicted than a handheld magnifying glass and a flashlight.  

According to my limited research, there are apps and a multitude of things to assist the vision impaired.  I haven't quite figured out who to actually contact about all of this when the time comes, but it is a comfort to read about people who are doing their best to carry on with their lives despite their loss of sight.

I have read several first-hand accounts of what it is like to experience the sudden onset of vision loss and it reads exactly like my version of scintillating scotoma aka migraine aura; things disappear.   Just as my mother had done, the victim thinks there is something in front of them, blocking their view or tries to rub their eye to clear the obstruction, only to realize the obstruction is in the eye, not in front of it.

Since I've had migraine auras, I have had a foretaste of the misery to come.  Thankfully, in my past experience the auras had always passed after twenty minutes or so, but wrapping my head around the time to come when the vision will not clear up is, well, terrifying.  I don't want to face it.  No one expects these things to happen.  

Come to think of it, no one expected the Spanish Inquisition, either.

I'm a huge fan of Monty Python, and sometimes when my anxiety reaches crisis levels, I need the silliness in my life.  Just as the Spanish Inquisitors in the video above come charging into the room, this diagnosis has charged into my life.

Yes, I know the retina specialist said it could take years for AMD to rob me of my central vision.  But he also said it could happen overnight, without warning.  I know he didn't say this to be cruel; his job is to be truthful.  He cannot tell me, 'Hey, no worries, just go on with your life.  It probably won't happen for awhile.'  

And then, if it did happen overnight, how would he explain that away?  He cannot.  He doesn't have a crystal ball.  All he has are statistics and (hopefully) the skill to slow things down somewhat if my dry AMD would turn to the wet form.  On a side note, I have a followup exam with him this coming Friday, wish me luck.

This year has been a hard one for me.  For us.  Poor Carl has been through everything with me and still stays as constant and loving as ever.  I know he has anxieties about all of this, too.  Of course he does.  Our plans for the garden, for remodeling the house, for our stained glass projects, for our metal artwork will all be jeopardized by what happens with my vision.  

Mom's illness and death in April was a huge blow, yes, even at the advanced age of 96.  Like my deteriorating vision, yes, we saw it coming, but nothing truly prepares you for the loss of a loved one.  I'm still floundering around here every day, leaving our old bedroom door shut because that is where her things still are. When I open the door and go into the room, I can still see her lying in the hospital bed, struggling to breathe at the end.  And I can still see her lying there dead.  I've found myself standing with my hand on the doorknob, crying in a weird, almost wailing state, repeating over and over, "I'm sorry.  I'm Sorry.  I'm Sorry."  I'm sorry for the loss of patience I had at times, I'm sorry she had to face the end of her life with the loss of her vision two weeks before she died.  I'm sorry, Mom.  You deserved so much better.  

And even though she could barely see after the wet macular degeneration, she tried so hard to paint her pinecones and not complain.  But I know what a toll it took on her.  And now I'm facing the prospect of that toll myself.  

I'm scared.

I cannot settle Mom's affairs until all claims on her estate are cleared, and that is coming up at the end of this month.  We've met with our lawyer and financial people, but I'm still at sea with how to handle most of these things.  Her house sits empty and forlorn.  I have a difficult time going in and often send Carl instead.  The insurance company is going to raise the rates because the house is abandoned.  There are so many things I should be doing with all of this, and now, the eye thing is tossed in.  

Carl is dyslexic.  He can read a little, but it is very hard for him.  Special vision training as a child did nothing for him and he has relied on me since we were fourteen years old to be his 'reader'.  I read him his textbooks, trying desperately not to doze off with the technical jargon and he lapped up everything I read.  He is exponentially more intelligent than I am and now what will he do if I can no longer read?  I handle all the finances, he handles all the repairs, we are a team.  But now I'm possibly going to be abdicating even more of my side of the responsibilities to him.  As if he needs more? 


 I threw myself into the garden after the funeral and waited for the garden to soothe me.   Upcoming garden walks and the fact I didn't want visitors to see a weedy disaster pushed me along when I didn't want to even try.  But since my first appointment with the retina specialist in June, I'm struggling mightily to get out there and love what I'm doing.

Some well-meaning people have told me to create vision memories that I can recall when my sight is gone.   I know I sound like a petulant sock puppet, but at this point in my life, I don't want to create anything other than a cure for this out of the thin, blue air.  Cures, however, remain a much-hoped for, elusive, out of reach dream at the present.

I can't remember Mom's opthalmalogist ever telling her (or me) that what he was treating her for was macular degeneration.  She had been taking the AREDS2 vitamins for years, but I do remember the doctor saying the jury was out on whether they were worth the cost or the bother.  I used to take her to the eye doctor twice a year and they put her through extensive testing, but never really said much.  It wasn't until I was in the same chair Mom was in back in March before I was told that yes, Mom had AMD.  

Was it better that way?  Better that the opthamalogist never said those dreaded words to Mom, "You have macular degeneration?"  In a way, it probably was.  For at least a decade we were going back and forth from her appointments and neither of us had any idea there was a sword hanging over our heads.  She only suffered the worst of it about two weeks before she died.  

Will I be that lucky and  go on for another thirty-plus years with no problems?  I have no way of knowing.  I could trip and fall down the basement stairs an hour from now and die; obviously, I am not that delusional.  Nobody gets out of here alive.  I think it is a good thing none of us knows our expiration date.  I guess for some people, it would be freeing; they would do all the things they wanted to do on their bucket list.  For people like me, it would be a brooding point even if I were to be given a date decades away.  I would probably find myself just like I am now, gloomy and doomy.  No, I don't want to know.

I've heard all the 'should-isms'.....be grateful for what you have, chin up, it can't be that bad, they'll find a cure.  And people are right.  At least I hope they are right, I so hope a cure for this can be found in the near, near future.  

With my diagnosis, even though I haven't progressed too much yet, there's not much chance of a complete cure, so I have to play the cards I've been dealt, but for the future generations, my sons, my granddaughter, Audrey! oh, how I long for an end to this nonsense.

  There are people out there who are offering millions of dollars in prize money to the person or group who can end blindness by 2020.  Wouldn't that be a blessing? As Jonas Salk balked at making new iron lungs for polio victims and instead focused on finding a cure for polio making it a distant memory, my fervent hope is the same will happen with blindness from every cause.  Research is ongoing, but sadly, many people I've talked to who are now afflicted know that the research is probably not going to bring back what they have already lost.

I'm not sure how I will cope with this, apparently, if you've read this far, you can see I'm not doing too well, already, right?  I am talking, talking, talking this thing to death with Carl and my family and friends.  My deepest fear lies in the fact I will disgust my loved ones and they will no longer want to associate with me.  I know that is an irrational fear, but to tell you the truth, does anyone enjoy being around a Negative Ninny?  

I remember the one and only time I've felt this alone and helpless; years ago I'd dumped my kayak on a river at near flood stage and found myself floundering in the whitewater.  I was so disoriented, I was going downstream headfirst which I knew was disastrous.  You don't want to run into a boulder with your head.  I tried to turn myself around but to no avail.  Though I couldn't see it, a tree had fallen in the river, known as 'strainers' for they tend to catch whatever is floating by.  The tree caught me, but not in a helpful way.  My life jacket caught on a part of the branch that was submerged and held me pinned underwater.  I could see the sun shining in the sky above me through the water, it was so surreal.  I took a deep breath and inhaled nothing but river water.  Deeper panic ensued; the realization that I was in dire trouble sank in.  I could drown right here.  This is it.  How it all ends.

Thankfully, the combination of my weight and the power of the rapids broke the branch and I came out on the other side of the tree, but I was still going backwards.  I was spluttering and coughing, trying to get the water out of my lungs, and still terrified.  Finally, my body broadsided a boulder which stopped my progress downstream.  I crawled up onto the big rock and sat there, trying to rid myself of the river water.  At that moment, Joel came around the corner.  He couldn't stop as the water was too swift, but he said he'd be back.

I don't know how long I was underwater back at the tree, possibly only a second or two, maybe longer, but I was so scared.  After Joel went on downstream, I sat there on the big rock and grew even more terrified; somehow I had to make it to shore.  There was no way they could rescue me from where I was sitting.  One of my shoes was gone, and I was bleeding from a few cuts and scrapes.  I started to cry, me, a grown woman, sitting on a rock in the middle of the rapids, bawling because she was all alone.  

After a few minutes, I forced myself to leave the safety of my rock and plunge back into the rapids, at least this time, feet first.  It was another agonizing trip downstream but I managed to get closer to the shore and finally, found myself standing in the muck at the edge of the water.  I had 'rescued' myself somewhat, but I was so glad to see Carl and Joel charging up the path when I tried to crawl up the bank.  

I imagine when I lose my sight, it will be very similar to the experience on the river.  I will be lost.  I will be certain to go under at times.  I will cry, I will wail, I will feel sorry for myself, I will be terrified.  

But I must remember I have to do what I can to help myself, too.  I cannot wait for people to save me, cure me, protect me.  I have to do what I can do to help myself, and yet be joyful and appreciative of the people who will do their best to help me if I do my best to meet them halfway.

I am thanking all of the people who have already listened to me in my anxiety.  Carl, Joel, David, Ann, Nancy, Abby, Emily, Brenda, Patti, Gloria, Julie, Mary, Tom, John, my garden group friends, the list goes on and on, and now I add my blog family, too.  I hope if nothing else, I will be able to see for a good long time yet, but if I cannot, then I still hope to be able to blog some way or other.  Being able to get my fears in writing has been a lifesaver for me all my life.  

I would like to end with an upbeat thought, but I think I will end with something Carl's Uncle John told me.  He's already walking the path I'm approaching going on nine years now.  He was sad when I told him my diagnosis, "You're too young!" but he was very uplifting.  

He is nearing ninety now and said this, "You don't know what will happen, Karen.  You have to take it one day at a time."

Anything can happen.  

The Eyes Have It: Part Two

I went to see the retina specialist on Friday.  Carl drove me in to the appointment, which was a good thing, because we encountered road construction and detours and it took two of us to figure out where we were going.

After a round of tests, my eyes were dilated again and we sat and waited for the drops to take effect.  When the doctor came in, he gave us both a firm handshake and went right to work.

Shining a horrendously bright light into my eyes and bidding me to look up, look right, look down right, look down, look down left, look left, look up left, look up, in rapid succession, and raising my droopy eyelids with his finger, he finally backed away from me on his rolling stool and said, "You have the early signs of macular degeneration."

As he was washing his hands, he said, "Do you have any questions?"

I was sitting in the chair, blinking, thinking.  Macular degeneration? This doesn't sound good.

"Is there anything I can do about it?" I asked.

"No.  There's no cure," he said, moving on to dry his hands.

"So I will go blind?"

"Not entirely, you may be left with what is called 'low vision'.  Mostly, you will lose the ability to focus with your central vision.  It will be similar to looking through a piece of glass with a big smear of Vaseline in the middle, or the middle may go dark.  You'll probably still have peripheral vision, though.  This could take decades to develop, or it could be you'll wake up one morning and it will be there."

Oh.

"I brought my mother to this clinic a few weeks before she died because she developed a black curtain-like thing hanging down.  The doctor injected her eyes with Avastin," I said, "What was that for?"

"That was wet macular degeneration," he replied.  "Maybe you'll get lucky and hold off on progressing to that stage until you're 96.  But there are no guarantees.  Here is a pamphlet describing the problem for you to read up on," he said.  

"You're in the very early stages, so at this point, I could prescribe you AREDs, (vitamins for macular degeneration) but it may be a bit soon for that, it all depends on how fast it develops with you.  All cases are different.   Hopefully, by the time your case becomes advanced, there will be some new treatments in place, you never know.  I'm going to send the nurse in and she will teach you how to check for emergency signs of loss of vision.  Otherwise, I'll see you back in two weeks.  Nice to meet you."

Another firm handshake all around and he was gone.

The nurse came in and told me to cover my right eye with my hand, put my arm out to the side and wiggle my fingers.  I should be able to see my fingers at the top, middle and bottom range of my arm's movement.  Now, cover your left eye and do the same thing, and if at some point I cannot see my wiggling fingers, I'm to call right away for that is an emergency.  

Um, ok.  

All right, you can go to the appointment desk now.  

"Hmmmm, the doctor wants to see you in two weeks, but he's on vacation in two weeks, so you will have to come back in three weeks," the receptionist said.

Three weeks puts us in the week of July 15, when we are having a tour group from Iowa arriving....plus I am still driving an hour every other week for Lyme disease treatments, so I asked, "Would it be possible to move it to the week after?"

"He wants to see you in two weeks, and we're already moving it to three weeks, so no, we will not move it to the week after," she replied firmly.

So, appointment card in hand, we made our way down the elevator, out to the parking lot and into the car.  About halfway home, I broke down crying in self pity and fear.

Carl tried to comfort me, but the tears were rolling.  Everything I was looking at was beautiful, the sky, the clouds, even the weeds in the ditch, and to think I may be losing the ability to see was overwhelming.  

And still is.  

To be unable to see sights like this......makes my heart hurt.

How often we take things for granted, but I must say, my vision was not one of those things I took lightly.  I've worn glasses for severe nearsightedness since I was eight years old and have always had the nagging worry someday they might not be able to correct my sight any longer.  I've entertained learning Braille before I ever went blind, and practiced filling water glasses with my eyes shut out of the sheer dread that someday I would be sightless.  Worry warts like me tend to be almost Boy Scout-like in our lives, "Be Prepared."

But even though I've often thought of the possibility of being vision-impaired, nothing prepared me for the diagnosis, even though he used the word 'early'.  Right away my mind jumped to worst case scenarios.  

And when I got home and sat with the pamphlet in my lap and 'age related macular degeneration' in the Google search box and started reading, my fear grew.  I now had many questions, but wasn't sure which type of AMD I had.

Ironically, at that moment, the phone rang. It was the retinal specialist.

"Did you have any questions?" he asked.

I was wiping away my tears, and I said, "What type of AMD do I have?  Wet or dry?"

"Dry!  If you had wet, we'd be using a laser or eye injections to try to preserve what vision you'd have left, no, you have the dry form, in the early stages.  Any other questions?" he asked.

"None that I can think of, " I mumbled.  Truth be told, my mind was reeling, I wasn't thinking straight. 

"All right, then.  I'll see you in two weeks."  

I was still holding the phone and almost said, "No, you'll be seeing me in three weeks," but the line was already dead.

And you all know what I did, I went on a virtual terrifying search of all things AMD related.  The good, the bad, the ugly.  They're all there on the interwebs.  Some things are hopeful, some are not, some are dubious cures, some are malarkey, most are unknown either way.  All are guaranteed to be expensive.  But what price can I put on my eyesight?

I've known two people who had AMD; yes, they continued to live their lives, but their personalities were greatly dimmed along with their vision.  I'm sure it was because they couldn't see the faces of the people they were trying to communicate with and were unable to read expressions.  For all intents and purposes, their ability to function was profoundly diminished and depression settled in.  

I've had a foretaste of this insidious vision problem with the migraine auras and I know how awful it is to not be able to see anything you actually try to focus on.  The first time it happened, Carl was driving, and I thought I'd caught the flash of a mirror or something in the bright winter light, causing a spot on my vision (like a flash from a camera leaves the spot on your sight. ) 

I tried to blink to clear my vision, but the spot grew and suddenly oncoming cars would disappear as I looked at them.  When I looked at Carl's face, all I could see was his hands on the steering wheel.  I was so scared.  Everything I looked at directly was gone in a black hole.  It was awful.  After ten minutes, my sight slowly trickled back in, but then bright, scintillating lights in the shape of a vast floater were flashing in my eye.  After the light show diminished, a massive migraine descended, but my eyesight was back to normal. 

I had gone to the eye doctor after this, and was told what I'd experienced was a 'scintillating scotoma' and though it affects the eye, it's actually a brain problem.  (Is that supposed to make me feel any better??)  Two years ago I kept track and I had one or two episodes a day on and off for over six months.  I have not had another now for over a year.  I do not miss them.  

But having this diagnosis is still frightening.  One website put it this way:  'The diagnosis is almost as upsetting as the loss of a family member.'  And I couldn't agree more.  I feel like I have a double helping of mourning going on right now.

Yesterday, Saturday, Carl was gone all day helping to move equipment from his late brother's shop.  I was home alone.  Joel and Dave also came over to help Carl with the job.  I was at loose ends.  I should have been out in the garden weeding (as I should be right now) but the way I deal with uncertainty is to write.  I keep a journal and I was writing my fears out, and then realized that in the future, maybe distant, maybe not so distant, I won't even be able to do that for lack of sight.  Cue the tears again.  Poor eyes, they are being assailed on all fronts.

I picked up the phone and called my dear friends.  Just hearing their concern and some stories of how their parents or other friends are coping with AMD helped to calm me.  I am not alone. What would I do without my friends?  I don't want to know.

And then a familiar vehicle drove in.  It was Abby with little Audrey, come to cheer me up.  How kind of Abby to come and offer her comfort and the presence of sweet Audrey took my mind off my problems.  I didn't take any pictures yesterday, my eyes were too sore, but I'm including a picture Joel sent me a few days ago.
 

Who can be sad around this little girl?

 I had no appetite yesterday, and sadly not much ambition to do anything.  I was not a very good hostess.  

When it was naptime for Audrey, Abby left for home.  I wandered out to the garden and half-heartedly pulled some weeds.  I was the picture of dejection again. 

 I am ashamed of myself, this will not do.  My vision is just another thing I'll have to learn to deal with, maybe tomorrow, maybe in thirty years or so.  Every one has problems, I'm not a Special Snowflake.

 As the Charlie Brown cartoon so wisely states:

Some day, I might not see well.  

But on all the other days, I will.

What's Next? Part 22: Gazebo Moving: The Video!

At long last, the much-anticipated time-lapse video of:

The Great Gazebo Move of 2017!

 Cast:

 Architect/Builder/Foreman:  Carl

Technical Advisor: Tom

Tractor Driver:  Joel 

Chainsaw Wrangler:  Joel  

Shovel Operators: Joel, Tom

 Rope Handler/Gazebo Balancing Expert:  Mary

Telescoping Handler Driver: Warren

Technical Assistant in Charge of Chains and Alignment: David

Lead Go-fer:  Karen

   

 Video/Photography Credits:

 Producer: Joel 

Videographer: Joel 

Editor: Joel  

  .

  Chickens (in alphabetical order): Ashley, Gloria, Sarah

Filmed on location at Quarry Garden

In Loving Memory of Grandma Lucille 

What's Next? Part 21: Gazebo Move: Part Three

 I know what you're thinking; and yes, you're right.  It took less time to actually move the gazebo than it's taken me to write about it.  If I could get my technology to work correctly, I would post a delightful time-lapse video Joel captured of the entire process and save us all the bother of another long, drawn-out wordfest, but you know me, I love to drag things out.  (I tried uploading a video last night (until 3AM) but just as it was nearly finished loading, another thunderstorm rolled in and I lost the connection.)  

 Wait........maybe we'll get lucky, the upload seems to be working.....or........maybe not......oh, well.  Moving on. Where were we?

Oh, yes.  The gazebo was sitting in the driveway, awaiting Warren and the telescoping handler to arrive.  Carl was up on the deck with a ladder, climbing up to open the roof and attach the straps and chains for the lifting process.  

This was the part I wasn't sure of; would the structure hold together being unceremoniously picked up by it's head? 

Carl assured me he had built strong trusses and roof supports.  I should ask him why he did it that way, since we never had any intention of moving the gazebo when we built it that I know of.  But I could be wrong and often am.

My nervousness ramped up when I saw the telescopic handler coming down the road; here we go......

Warren backed the machine in and David is hooking up a chain:

 Carl is up on the roof, waiting to hook the chain to the gazebo:

 Warren moves the machine closer:

 Carl hooks the chain in place:

 We all hold our breath.........and we have lift off....

 Carl and Tom get ready to move the running gear out of the way.

And there you have it, a flying gazebo.

 As Warren moves forward, Carl hangs on to the guide rope to stop it from swinging too much.

 Heading to the foundation:

 David steadying the gazebo on the south side.

 I was out on the road, trying to take a video. 

 And, finally in under a half hour, the chains were unhooked, the gazebo was in place, no one was injured, and Warren was on his way home.  We are so grateful to Warren for his help; it would have been so much more difficult to place the gazebo in the new location if we would have had to somehow slide it off the wagon and drive a tractor through the flower beds.  Plus, all the stone walls would have to be moved, too.  This was so much better than we could have ever hoped for.

 Carl and Tom worked on fastening the posts into the deck brackets.  The next step was to put the hinged roof back in place and we were done.

 I have used the gazebo more in the last two months than I ever did in the previous thirty-something years; I couldn't be more pleased with the placement, either.

 Amazing how taking the gazebo off the stilts changed the character and grounded it in the landscape.

 I now take gardening breaks on the deck and guzzle some nice cold water as I sit in the shade, something we never did before.  We should have moved it years ago.

Below:  First two pictures taken in April and then......

Today, June 22.

  
The view from any angle is great; and I'm far enough away from the weeds that they don't bother me.  As much.  

 But what happened to the Tardig, you may ask?  After spending a good month face-down on the lawn, the Tardig now lives in the Lane Bed where he contrasts nicely with the 'Sunkist' arborvitae and hostas.

 All in all, the move was a resounding success.  We're not always able to say that with confidence when we finish a project, but this time, it worked out wonderfully. 

Our deepest appreciation to Warren and Gloria for their unbelievable generosity.  And abundant, heartfelt thanks to Mary and Tom, Joel, David and Ann for all of their help.  This was a team effort and we couldn't have done it without any of you!

And finally:  I have dedicated the new Gazebo Garden in memory of Mom.  

This lovely plaque from my friend, Nancy, has always been a favorite of mine.  And if there ever was an angel in my life, it was Mom.

 Above:  This beautiful plaque was a gift from Warren and Gloria for Mom's funeral.

Below:  Ann gave me this gorgeous angel.  Mom loved to feed her birds.

The little boy statue is not new; I bought it when Joel was a toddler and Mom always loved it.

I'm filling the area with annuals and perennials of every shape and color in her honor.  

I know she would love it.

I don't know if she can see it from heaven or not; but Mom,

This garden is for you.  

  With all my love,
Karen