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The Bill I am seeing the last couple of weeks is withdrawn and has drifted off perhaps in thoughts, perhaps in memories, or perhaps he has just drifted off in the clouds.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.

Cat hunting is Bill's latest thing. He used to feed squirrels to draw them to the house, but has moved up to the house cat. This pretty much sums up portions of my day on the home front.

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.

I think it finally hit me today.

I'm real big into self help and spiritual growth. I believe we have an obligation to the people you've loved in your life. It's nice to help the stranger- good Samaritans are right up there on my list, and I love to give. But we are fortunate enough to meet a few people in our lives that really make an impact. I believe the need to stay connected and be there for special friends, those you think of as more of a friend, more of a circle of soul "mates." I have been blessed (truly blessed) to reconnect (what would we do without facebook, guys?) and I want you to know that you played such an important role in my life for that period of our life, you helped make me be the person I am today. Never did anyone have more fun in life than I have. I want you to know I have more fun in my life than should possibly be legal for anyone. Those that have stayed close over the past what, 15, 20, even 42 years (Hi, Melany! See you soon) know the truth in that. Some (Bob, pay attention) of you best keep your mouth shut, too. I'm married with children now.


I take life straight on and go with the flow. It's how I have lived. In order to do that, I am always reading and researching meditation, yoga, etc. There is nothing like being able to find a balance and understand the difference between good stress and bad stress (distress). Since it is the way I live my life, I have been able to be pretty matter of fact about finding out Bill has early onset of the big A and taking action. Bill and I agreed we would make the best of this, like we have everything else we've faced.

We've lived life full furry. Living here has been the icing on the cake. Never in my wildest dreams did I think I would experience Northern Lights, moose, having to stop on a major highway to wait for bears to cross the road, etc. Just on the way home from Marquette the other night in the fog we passed hundreds of deer (eye to eye a couple of times. I prefer seeing that brown tail with the big white stripe running from me. I stopped Monday to wait for the largest wolf I have ever seen (I swear, straight out of Twilight, lol). Thursday night, we stopped to watch three baby red tailed foxes playing on the edge of the road. I spent two summers ago in my back yard watching Golden Eagle mates teach a nest full of youngsters how to fly. Now that was cool. I am going to miss this land. I understand why so many of the famous and wealthy have their hide aways on our islands. Holy cow. It's like walking into a different time.



And my friends. My co-workers. Those that are both. I have not bonded with people like I have here in years. I forgot what I was missing. My staff, thank you for being a part of my team. We had a tough five years. We put our hearts into the kids. We helped some of them (way to many in fact) live their lives to the fullest, up to the last minutes of their lives. We'll miss our babies: Amy, Chris, and Thomas. No teaching team could have dealt with helping the kids and their families through to the end, but we did, and we know without a doubt they had quality of life. Every baby that dies should have people holding them singing their favorite songs, smiling, and laughing. We did it and we coped and we helped those students remaining learn that life is awesome. We lost our dear friends, Dan (Dan oh Dan oh Dan. I hope you heard us sing happy birthday to you. I promised the kids you would hear) and Ruth. I smile every time RJ calls Dan in heaven to narc Barb and I out for making him to his academics. Unforgettable. And brother Dave, like you always tell me, give it to the universe. Sorry about the loss of all that professional development, but we had fun anyway. Oh, and I hope Joe's Bar doesn't go under after I leave. They'll miss us. We did our best planning for school there, dude. Well, second best to working on the beach, but Joe's wasn't bad.



And the Sistas. Girls, what a motley crew we are: an ex-exotic dancer, my favorite tatted drugs and alcohol rehab counselor, Barbie doll working her way up the school ladder, a teacher, a transition/voc rehab specialist, and the craziest neurologist I have every met. We were brought together by Tom and Mags. You turned out to be quite the surprise. Charlene, thanks for teaching me that Redbull and topshelf vodka really does have wings, and thanks for making sure I didn't stroke out on my 50th. wink. I will never be able to replace your friendships. You are unique and wonderful, and I felt like I was at home and could be myself every time we decided to let our hair down. Remember: I have pictures. Ba ha ha ha ha ha.

Anyway, all the self help in the world is up to quite the challenge in keeping my eyes dry when I say goodbye. Thanks for caring as much as I care. We did good.


picture by Dave O'Hanlon

And now to all my friends from home. We are on our way. Plan for one of my lawn parties. I think Al already has the keg bought. Harvey, watch him and don't let him pop the seal until I arrive. He has the keys so make yourself at home everybody. Bob, I am keeping your plans for our retirement as a serious temptation. I do worry about your choice of area due to the movies I've watched about Cape Cod. That was just Hollywood, right?

Hugs,
Lyn

Reflecting on all this

My Perception

It all started to reveal itself in 2009. Bill’s work performance was slowly going downhill. By December 2009, Bill had gone from excellence in teaching performance to a year of hell as the changes revealed themselves.
Hostile work environment.

The first unsatisfactory review was harsh. We actually turned it in as a hostile work environment and won. The supervisor was rebuked, and the review rewritten. Eventually, though, despite the supervisor’s forced professional conduct, Bill eventually was let go. The magnificent pressures resulted in fast decline for Bill.
The next several months were a whirlwind of appointments, denial, acknowledgment, tests, medications, stress, love, ok, just picture a tumble weed flying through the air catching pieces of all the debris around it. You got it. Like a run on sentence… no real beginning, no real end. Ok, that’s my drama for today. I am really trying to focus on the good. No worry, I am also trying to be very realistic. God knows life is full of the unexpected.

Now all the tests are back, and the results are early onset of Alzheimer’s. Bless Bill’s heart. It’s sad and it’s hard. But we’re not dead yet, ya know? We’ve applied for SSDI, we were blessed and had good insurance on our home in Arlington, which has repaired many of the damages and will allow us to move back home. We have made tentative plans to move home around June 15.

I am trying to work out all the financial stuff while we wait on SSDI. I have a wonderful friend that helped me get through some seriously late tax filing. She did amazing stuff. I actually have some money coming back to us. Wow. I need to find a job. I am going to go regardless. My first choice is to stay in my field of Special Education, but will find a job. I just have to find something I can fit into.

Jack is going to highly miss his friends and I am worried about his adjustments. He is such a good, good boy and I hope and pray he has enough support to survive all this change in his life with self esteem and happiness.

The time between now and the move, plus the move itself will be very very difficult for Bill. He is frustrated. The thoughts are there, and he tries his best to communicate it. Sometimes it’s clear, sometimes not so. Trust me, he gets his point across, lol.

Ok, so that is the update.

February 21, 2012

I'm coming off a nice let down after finishing the first step in Bill's application for SSDI. I have a lot to learn. Sometimes I have so many 'to do's' that I freeze up and avoid doing those things with every ounce of resistance I have. OMG. Talk about draining. Duh. Next two focuses: certification and taxes. I know. I keep putting taxes at the end, but most of the stuff I have put first take time to process. I felt I needed to try to jump on those things first. I'm not too good at this stuff but I keep taking it a step at a time.

Bill's been pretty good until the last week or so. I think he's angry or grieving since we went to apply for SSDI. Poor Jack. I have had to step forward pretty boldly to save his life a few times. Jack tends to over correct Bill. It sends Bill threw the roof. Jack puffs up and generally a testosterone battle occurs.

Ok, so I have to try to step in and protect my cub before the big brown bear eats him and I don't escalate that one angry bear at all. Thank God it doesn't happen all the time, lol. Jack sort of over anticipates and feels responsible. I remember being pretty much the same way at his age. He's kinda dense when it comes to taking subtle hints to back off, but so far no blood has been shed.

Jack is enjoying 16. He got his driver's license and two girls fought over him recently. It doesn't really get any better than that. Work's going good. I feel much better after a bout with the crud. Love my job, my staff, and my kids. We have so much fun every day. I am pulling in some inner strength to go above and beyond what I've been doing for the kids. I love this job.

I'm sort of reflecting tonight. I miss my family. It's aunt Lois' birthday. We talked for quite awhile tonight, and it made me so happy to be in a family like ours. Our Bill (aka the Colonel) isn't doing good. He has COPD and is extended in his stomach area. He's very uncomfortable, tests are taking way too long, and they are - we are scared. We support each other from where we are. It made me think of moving home, of not being there when I lost my dad. Never in all my life would I ever guess I would not be there to say goodbye. I have been very blessed but I have lost so much. I will not look back, but I will try to make it better for the rest of my time with my family.

Ok. Next time we'll lighten up. We laugh so much. The old dog just jumped up on the couch (a miracle for his age), Bill pops up out of his chair shouting, 'Holy cow. How much longer do ya think he'll last?" He absolutely cracks me up. This morning he had on two stocking caps. They angled on his head and he looked like a ram. Hilarious site in the morning. He said his little head was cold. It was one degree this morning. One. Holy cow.

The Day of the MRI

We did it. Bill made it through the MRI today. Tough tough for someone who is very clausterphobic, has a big history of being suspicious, and has dememntia on top of that. The first time we tried (over a year ago) he ran out of the hospital. There I am following him in a dead run (I am 50 and not in shape by any means at all; not a pretty sight) going, "hey, hey, Bill, stop, wait honey..." He met me at the car. That was the last time he agreed to be tested, until now.



On the way to the doctors, Bill was talking and grieving about not reaching all his goals and dreams, and was laughing and reliving some old times. He looks at me summarizing his philosophy by announcing that we are loving life and living it. And that's that no matter how the tests come out. We know it's not a tumor, we know we have some time, so Bill wants his Goldwing fixed. Wow. I feel like I have permission to relax emotionally a little while.



Now, the actual process was a hoot. I had explained to Bill's neurologist, Dr. Roth, about the last excursion of the MRI attempt and Bill's sudden ability to leap over tall buildings in a single bound. Dr. Roth generously perscribes three doses of 10 mil valium each. He tells me to give the first on 3 hours before the appt., the next one in an hour or so. If he's still showing signs of anxiety an hour before the appt, give him the thrid dose and they will give him a place to sleep it off. So I give the first dose. His response: I'm driving. Sorry, over my dead body, babe. Someone has to raise Jack and pee the dog. I win. For one hour he of course becomes an expert in back driving. I look at my watch. Time for pill 2. Hallelujah, thank you Lord. About twenty minutes later the talking does slow down. We now limit the conversation only to back driving. We get closer, the addrenalin rises, so down goes the third dose. He not only walks into the appointment,He walks into the MRI room, and totally cooperates. As soon as the test was over, he was definitely stoned out of his gord, but he is in a jolly and ornery, mood. He gave every person in the office a tough time and words of wisdom, did the test. Bill pops out of the tube chatting away. The doctor is stunned Bill is still talking and walking and asks Bill, "Have you ever taken that much valium before, Bill?" Bill response is, "Well, not legally, doc."Doctor's cracking up, nurses are roaring with laughter, the blood tech comes out for him and say, "Come on, sassy frass, I'm done dulling the needle." We go have lunch,he starts flirting with the waitress until I smacked him in the head and reminded him he is an old man and married," he spends an hour recruiting our waitress to go back to College, learn a second language (Spanish), and she's fired up and ready to return when we're done laughing and eating.



So, I set a few goals, wrote down a to list, and am making a promise to add Walnuts, popcorn, and yogurt (like one a day) to help control my blood sugar levels. The promise includes being consistant in my daily exercise regime, thirty minutes a day.I know we face some very difficult periods, but right now, at this very moment, I feel hope today. It feels good.

.

Grief

Grief comes in so many forms. It is an important part of our emotional makeup but it is confusing. Shock must be an intial response. Sometimes this still seems unreal. How could it happen to us? He's only 55. I think back and want to find blame. His work, the stressful lifestyle of a workahaulic. The truth be known I think we're closer now than we've been for years. He's playful and funny (thanks to the Paxil, lol) and fiesty. His labedo is certainly not affected (more information than you wanted to know I am sure, lol.) During his hospitalization for testing he wandered off and they lost him for about an hour and a half. He tells me he was having wheelchair races with a 90 year old down the hallway. He probably was. His grueling crisis hits, though, out of the blue. He'll become agitated. He paces worrying about not providing for his family. He has some OCD behavior that may drive me crazy. He has this thing about turnng off the lights. He follows me around the house. I turn on a light, he has it off in seconds. He's starting to forget to eat. He can't remember what day it is, or month, or year. He gets lost. He can know longer remember how to teach online, and when we practice it is like starting all over every day. How do I tell him he can no longer work? No longer teach? He lives to teach. He lives to help guide a student into a career that will meet their needs.

I am a bit paralyzed emotionally but need to begin to take action. I want to move closer to my family. Ironically we ended up getting our house back in Arlington. Now Arlington has not been my home for a very long time, and it will never be the same. My folks are gone, many of the folks I was close to have passed, but I have to start a life closer to my family and supports. The house is pretty much gutted from the renters. All my trim is gone, there are gaping holes where someone has punched their fist through. They sold our fireplace, ripped out the carpeting, knocked out walls, and did a hit and miss paint job on the outside of the house. The pack yard is full of sand, and the deck has been cut out. The peaks on the roof are starting to rot. Dear God help me figure out what is important to do and what can been done over time. Finding a job is primary importance. I just can't seem to make myself start on a resume. Again, the paralysis thing. Very strange experience.