Tuesday, July 11, 2017

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.  


Beth said...

Hi Karen, Praying for you. I understand that this is very frightening and depressing but as your uncle said, take it one day at a time. I have a friend with macular degeneration and she does fine. Her vision remains good. Yours can too. Also, I read (Dr. Barry Sears, "The Zone") that high quality fish oil in large doses may slow or halt the progression of MD. The vitamins might be a good investment. That is, if it's a case of "may help, but cannot hurt." Take care, Karen.

Tomato Thymes said...

Have you thought of getting a second opinion at a center of excellence for eye diseases? They are usually up on the most advanced treatment. Lis

FlowerLady Lorraine said...

Dearest Karen ~ You are in my thoughts and prayers. Writing about our fears does have a way of lightening the frightening load. I like your uncle's quote.

Love, hugs & prayers ~ FlowerLady

Beth @ PlantPostings said...

Oh dear. I'm thinking about you and praying for you, Karen. Much wisdom in your words--the importance of humor and optimism, the possibility of a total cure, and the importance of taking it one day at a time. I have to tell myself these things everyday, too. ;-) Hang in there!

Bonnie K said...

I understand your fear. I know it is no help, but I have found the things I fear the most are not as bad as I thought. I'm sure it doesn't help. I am truly sorry.

outlawgardener said...

You're having a horrible year and I'm so sorry. As always I keep you and your family in my thoughts and prayers and wish there were something else I could do.

chavliness said...
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Ellie's friend from canada said...

I am not sure what happened to a comment that I sent you but here goes again. You live very close to your Mother's house, I think, and it should be okay with the insurance company if the house is checked everyday and they shouldn't treat it like a vacant house. If you can persuade them of this, then keep a diary of the date and when you checked the house. I've had the same experience.

You need to be kind to yourself. The warmth of your relationship with your mother came through loud and clear in your blogs written while she was still alive. A loving mother cuts a daughter some slack when the daughter is stressed and coping with many different changes. And your mother did just that! So your mother knew and loved you and a momentary impatience was, believe me, far from her mind. She loved being with you at your home. She loved the meals you lovingly prepared for her. And you and your family were there for her. So don't for one more minute feel guilty that one day you were exhausted and were impatient with her. She knew the pressures you were facing and she didn't think about it for long as she was your loving mother! And she knew it was just as much of an adjustment for you as it was for her! So cherish her wonderful qualities and don't dwell on what was a temporary glitch.

About your eyes, we haven't heard about your most recent visit to the retinal specialist. I hope that you will have very slow progressing damage (if any progression at all) and that you will have many years of sight left.
And Carl's uncle is right. Take one day at a time. Don't ruin your present with worry about an unknown future.

Alison said...

Karen, I've taken too long to respond to this post. I've come back to it a few times without a clue what to say that will help. I have no advice to give, all I can offer is a virtual hug. Please know I've been thinking about you.

Karen said...

My apologies for not getting back to the kind comments posted here. I've read each and every one, and am deeply grateful to all of you for your concern and suggestions. What would I do without the caring, kind people in my life? What a blessing you are!