The MRI

“The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed.”   --- Albert Einstein

"The heart wants what the heart wants."  --- Woody Allen

My life with Bill has lead me down more than a few roller coasters. Just when I begin to think I have a grip on things I find myself leaping off the next cliff, looking for answers, questioning my actions and decisions, and forgetting that in real life there are things that happen that are out of my control. If not for laughter, I would lose my mind. 

The Bill I am seeing the last couple of weeks is withdrawn and has drifted off perhaps in thoughts, perhaps in memories, or perhaps he has just drifted off in the clouds. Where do we go when we are "there?" The changes in routine, in eating, in skills, in speech, lethargy, flat affect, and signs that he is having pain trigger the nursing staff to investigate, so off to the Dr.'s office we go. Or as Bill puts it, "going to see the German." I have to tell you, not all of Bill's "nicknames" are quite this polite.

The Doctor, a scholarly healer with years of experience marked across his face, begins to engage Bill in conversation. "Professor?" he begins. Bill sits in his chair oblivious that the conversation is being directed at him. "Professor?" the doctor repeats. Bill's eyes remain fixed in space. "Honey," I turned towards Bill, using my finger to slowly draw his eyes to the physician. The doctor began asking Bill questions. Some he was able to answer with one or two words. Other times the words were jumbled, not related at all to inquiries. 

"I see many changes," the Doctor notes. We talk about past health history and my original concerns that his melanoma, treated five years ago, might have internalized and metastasized. I see many changes, he indicates, and a cat scan is ordered to rule out other causes. I am elated that further steps are to be taken. And I am alarmed. The time before last ... the time before the last time... Oh, dear God, the time before the last time he ran. And the last time we did complete the test, but only after he was given 40 milligrams of Valium and he was accompanied by a 400 pound sumo-wrestler type attendant that I sweetly referred to as Bill's private bouncer.  

So here I was again, sleep deprived and  anxious from flashbacks and night terrors and the horror that I had slept through my alarm. I ran from my car, bursting through the hospital doors, panicked that he would look for me to help him, wonder where I was, filled with fear. Would he fight once he realized what was expected of him? Would he run? Relief flooded me and tears began to roll when Michelle, his social worker, he was calm when the nurse took him by the hand and led him to the MRI. Silently I sat, salty droplets falling from my bowed head. Just about the time I feel like I have accomplished a balance in my life, I find myself baffled with a new phase of grief. Guilt? Anger? Questioning myself, our past, if I have done all I could possibly do... and wishing it would just be over. There it is. It feels like the greatest sin of all, wishing it would just be over. 

Just be over... what would that mean?


Bill, I am so sorry. I got absorbed in a stage of grief. Sometimes it is difficult for me to break out of my world and imagine more out there. I am starting to pull it back together- identifying the source of the sadness is a difficult process. I am trying so hard to make it through this. It's very difficult to watch the father of my only child go through such hell.  We've been married for 26 years this week. I loved you through most of those twenty six years. For twenty six years I uprooted myself, uprooted our son, to support you, to serve you as wife til death do us part. 

Is this my nightmare or is it yours, dear?

“I DON'T CARE!" Harry yelled at them, snatching up a lunascope and throwing it into the fireplace. "I'VE HAD ENOUGH, I'VE SEEN ENOUGH, I WANT OUT, I WANT IT TO END, I DON'T CARE ANYMORE!"
"You do care," said Dumbledore. He had not flinched or made a single move to stop Harry demolishing his office. His expression was calm, almost detached. "You care so much you feel as though you will bleed to death with the pain of it.”
― J.K. Rowling, Harry Potter and the Order of the Phoenix

Long silences
blank staring eyes
moments of lashing out in anger

Lost in a sea of jumbled memories
  words floating to the top of the sea foam as he tries to tell me something from the heart. His memories are     shifting and resurfacing. His face grimaces as he tries to tell me... something...

Day after day he dies a little more.

I don't know how I am supposed to feel. I have jumped off a cliff and have no where to land. I remember the day when I had to decide on a daily basis whether or not to continue to love you. It is so much easier to be angry for your transgressions in our marriage. Now I reflect back and wonder if it was the disease. Dare I hope it wasn't my flaws you were seeking to escape from. Were you running for your life?

It's almost like the days of the past were just a vivid waking dream. The only question I have is is this your nightmare or is it mine? There's a black hole centered in my soul where time slips simply into a blur.

We have rudiments of reverence for the human body, but we consider as nothing the rape of the human mind. ~Eric Hoffer

“A girl calls and asks, "Does it hurt very much to die?"
"Well, sweetheart," I tell her, "yes, but it hurts a lot more to keep living.”
― Chuck Palahniuk, Survivor

Photos thanks to morgueFile free photos.

A Little Drama

Hi, guys. We are recovering from some drama from last weekend. Bill had an extremely intense day on Saturday. He had refused to take his meds while I was gone. The meds don't stay at a therapeutic level once they are stopped and every time you stop taking the meds, you are only able to stop the progress of the disease from the point you begin the meds again. It can prolong the effects of the disease but not stop the disease.

Watching Bill go through confusing times is difficult. He was in an accident last weekend. He is pretty torn up from the seat belt. He also sent a woman to the hospital from the other car. She was released. Bill totalled old Betsy. We've had Betsy since we got married- 24 years on September 5. Betsy was a trip. She was originally maroon but when we applied for his last couple of years parking permits for Betsy, we have listed the color as rust. The driver's seat has this well formed whole that just fits Bill's tiny hiney. She was always immaculate,  never dusty, never any gravel or leaves... pampered. Between losing Spike, our 14 year old miniature poodle and losing Betsy, Bill has been grieving. He was ticketed, and I did get notice yesterday that we are being cancelled by our insurance. When it rains it pours.

I wait for those times when the old Bill breaks through. I grab him and try my best to communicate, to talk to him. We both grab onto those moments. He tells me how strange it is to be lost upstairs, how difficult it is to keep track and keep things straight. He usually tears up, but he's open and very honest when it happens, and he is always apologetic for his anger and frustration and talks about getting better.

The day Bill had his wreck, I had followed him around all day long. He was determined that Betsy needed oil. He was obsessed. He'd come and get me, and I'd show him the dip stick and say, see: it's full. She doesn't need any oil. He was determined. Throughout the day he added 4 quarts of oil to an all ready filled engine. I expected him to blow up the engine, but never in my wildest dreams did I expect him to drive off without me. He jumped up (granted, for the 150,000th time that day and I had followed him instantly 149,999 times.) I said, "Where are you going?" "Out to check the oil! By then I had locked Bill's car and hid the keys and had sent Jack to Grandma's in case he decided to work on the hybrid. I turned to grab my shoes, ran the dog to her crate, and walked outside. No truck. No Bill. For two hours I waited to find out where he went.

When the Sheriff drove up, all I could say is, "do you have my husband?" I figured they had arrested him, the funk he was in. They had him. He'd been in a wreck. My heart stopped. I couldn't breath. He wasn't hurt and the woman involved would be OK he assured. I jumped up and followed the Sheriff.

When we got there, I had explained Bill's day, the early onset of Alzheimer's. I learned that Bill had been tested for a DUI and of course passed. Bill was agitated and was very upset. He was very angry with me, calling me a traitor for sharing his personal life with the cops. The anger lasted for several days, but he is coming back around, both cognitively and behaviorally. He still has difficulty processing information, but he checks in often.

After a couple of days, he mellowed and Bill's memory of the wreck is a tad bit different than the police report. Here is the report of the wreck in Bill's own word. Perception is everything.

The wreck really brought up some weird grief stages. Ewwww, I hate grief. I do not like it when I cry. I want a plan. I want to follow the plan. I want to get from point A to point B without going around in circles.Grief can have a paralyzing affect. It's like being in a state of walking in your sleep. You get more and more frustrated, and try to pull out of it, but you just can't quite wake up.

Yesterday I opened up my devotional. It had four simple words. Wake up and live.That's it. That's all it said. So that's where I am starting. I think it' OK to grieve for awhile, but I have to live in the moment  rather than being frozen from grief and miss the good things going on around me. So I prayed for God to use this somehow for the good. Give this purpose. We're both trying to move back to living life to the fullest, to love life and breath it in and appreciate today for today.

The transition

The packing is all done. The trucks have come and gone. We've slept here in our first and favorite house for a couple of weeks, now. Most of the boxes have been unpacked and things are beginning to find homes. My courses are set up and I have officially been in session for two days. My office area isn't organized yet, but I have been doing my live sessions from the sun room. It's nice back there. It's always had a warm, cozy feeling.

Bill is adapting quite well and I am so happy. He is remembering where things are. He rides his bike around town. He is going to be able to maintain his independence a lot longer and safer here. The move really pushed us. Painfully at times. My mom came the last month to help me with packing and with keeping Bill company (and safe. He loves to drive. Scary in the city.) We are there, things are coming together, boxes are slowly disappearing, and the house is beginning to gain back that unique cross between the Beatles and nature lifestyle that Bill and I take such pride in participating. It's good, and it's getting better. There are sections that are flat out scary. Blame it on the strokes, lol. (Attn: Barb. That was for you, doll.)

On the last day of work, several of my favorite people from work came to say goodbye. I didn't capture everyone on film and I thank all of you for coming.




Dave is one of the best special education teachers I have ever worked with. I love Dave for many reasons: I love his dedication to the kids. I love his dedication and commitment to his family. Dave is a man of high morals. He sets his standards high and abides by them. I have such admiration of his honesty. I also admire his love for mother earth. I learned so much about forgiving, for looking for the best in people, and for learning to "give it to the universe."






Then there is my sweet friend, Barb. Barb is absolutely sister material. Right now she is cursing me for putting her picture on my blog. Barb has this heart made of gold. She has a natural way with the kids, and they adore her. She is on her way back to school for the second year. She needed someone to believe in her, and I couldn't help but believe in her. I see her goodness. Her uniqueness. Her ability to overcome everything that stops people from following their dreams, and she leaps over tall buildings in a single bound. Ok, maybe not that, but the girl can go from standing on the floor to standing on the table in one giant step. Amazing.


So the last day of school, all the materials are in boxes, all the I's are dotted and the t's are crossed in final reports. All Medicaid billing is done. The company end of year picnic is over (it was freezing, by the way.) I am taken to one of my two favorite mom and pop beer joints (one of my favorite terms used by my dad). The bar tender made me a yooper's version of long island iced tea. It melted the gold caps in my teeth. Seven straight shots. Holy. Tammy, my favorite bar tender from Joe's, helped coach the bar tender at Dan's. I think there may have been some sort of a conspiracy to get me to dance on the table top. I was able to avoid that temptation this time. America's funniest videos my ars. Luckily I was able to capture this photo of Tammy giving a vivid demonstration of an exercise designed to eliminate double and triple chins. I don't know. Her husband just sat there and grinned. Poor Shelly watched and got a little bit confused, grabbed Barb, and, well, you can see the surprise on poor sweet Barb's face.
Eegads, can't take these two gals anywhere. No social mores, lol.






Shelly took it very personal- as a hugs triumph in flooring her buddy, Barb. Shelly, you win!



In the mean time, Dave and I are on the beach making lesson plans for next year if you need me. I wish. What a great job I have had for the past five years. Thanks for teaching me to slow down, soak in what God has to offer you every day, stop and smell the roses, and so on.

Goodbyes: the last week of school

As I near the end of packing to move back home, I am finally able to identify some of the grief I am feeling. I love working with my kids. It is a part of me, of who I am. It is a part of my identity.

It's humbling and an epiphany when I think of all the things I have learned from my kids. Here a a few of those things:

1. Exercise helps lesson our stress





2. Find purpose.

















3.Stand up for yourself






















4. Learn from each other










5. Forgive each other over and over and over. Accept differences and try to find the good in people.


















6. Forgive each other over and over and over. Accept differences and try to find the good in people.
















7. NEVER


Ever



Ever give up. Think beyond your limitations.













8. Do things that make you happy. Climb, swing, ride bikes, spin....





9. You can tell really good friends you love them if you really do. It's ok to love others, too. If you don't know how to love, just spend a day in my classroom.



















10. Care from the bottom of your heart.We love and miss you, Joey.



















11. Celebrate every day like it is your birthday. Do things you love to do.








12. Set goals, dream like Marty and Billy, and work to be successful like RJ and Elvis.

The beginning

When exactly did I notice something was wrong with Bill? And how could it happen to us? Why do I feel so matter of fact? Where do I go from here? Just over a year ago, my sweet husband of 23 years lost his job. The job search started and interviews slowly started coming in. The stress was tremendous for him and probably worked as a mask for awhile, covering his mounting confusion.