Morning (or mourning)

Dear Friends,

Thank you to all who wrote, emailed, or called to check on me. I thought about taking my last post down, but in the end, decided to leave it there even though a I hate to be the person who is illuminated by those words.

The reason I decided to leave it up was that it was true. All of the fears and concerns I mentioned are real even if they were expressed by a tired and depressed man in the throes of loneliness. It sometimes is hard at night.

Now, at mid-day with the birds singing and the sun shining down, it is easier to put on a happy face and get through the day. When the sun goes down however, things are different.

Many have counseled me on what I can expect and what I should do to avoid pitfalls. All of it was (is) good advice and I am trying to take it to heart.

Sometimes I think it would be easier if I were more of a “joiner.” I have never been one to surround myself with friends or associates. I was always one to stay on the outside looking in. I am a habitual people watcher and can find lots of entertainment sitting in a crowd, but not part of it.

Before I met C, I was a loner. For the last twenty years, I have been one half of a whole. Now, I am only a half. I will have to learn all over again how to be alone and functional.

Of course, I am not really alone because K and J are also part of “me,” but they are at a point in their lives when they are starting to explore their individuality, and in the case of K, there is mobility to go with it. Plus, they don’t want to be around a mope and I don’t blame them. But when they are gone, I feel even emptier.

I suspect holidays are going to be harder to get through than the average day. Both K and J will be gone for part, or all, of this one. I had hoped to get some mechanical work done on my two sick vehicles, but it remains to be seen how much gets accomplished.

Again, thank you to all who are out there. I will get through this, it just won’t be pretty.

P.

I Hate this Shit

I just erased a paragraph of whining.

I am having a hard day. It feels like things are crumbling. I am feeling inadequate as a parent. The mechanical things we have grown to depend on are breaking. My children don’t want to spend any time at home. I miss C so.

It was so much easier with two of us, though it was a long time ago that she was really able to do much. Even so, just having her with me was enough to ease the burden.

I feel horrible like this. I know that it is only a bit of depression and loneliness, but that does not make it go away.

Tonight, J and I went out and bought a new DVD player for the family room. Sometime last week, the sound stopped working and this was the main venue for the kids to watch DVD movies. We have another one, but it is in my bedroom which is not good for them.

I hoped that it was the DVD player, but it appears to be something with the audio/visual receiver that runs the whole show. We still get sound from the VCR, but the digital audio channel appears to have bit the dust. The look in J’s eyes when I couldn’t fix it was so painful. Now he is in his room again and I feel like I have failed him.

I don’t know. It just feels like my world is disintegrating. I don’t feel like I am making a good home for either K or J. I don’t feel like I am able to provide good meals and create that sense of family that C did.

The next two weeks are going to be trying. K is off to Oregon on Saturday for a family reunion and J is going off with P and D for a long weekend at a family cabin. I hoped to go to Duluth with J after that, but I don’t know if I will be able to with my car exhibiting strange behavior.

I am hoping that I can turn this around.

P.

Broken

I am lonely and broken, leaking tears, and not one to be around. My children know it and leave any time they can. I can't make them stay, and if I could, it would only make things worse. It is I who must find the healing path before I can hope to mend us as a family, but right now, I don't know the way. All I want to do is to die and hope that there is a place where I can once again meet my only true love.

If I wasn't in the middle of this I would call it such sentimental twaddle. I normally don't hold with self pity and self sorrow, but here, in this time, I cannot fight my way out of it. This is a hard time for sure.

Perhaps if I did not know that my own disease is stirring I would feel more positive. The dragon is waking though. I feel its hot breath in my sleep as the night sweats come and I awake drenched and clammy. I take drugs to sleep, but they are not enough now to see me through the dark hours. How unkind to wake a sick and heartbroken man in the wee hours when there is no one breathing soft and slow beside him. How cruel life can be. Death perhaps is kinder.

I know this will pass someday. The feelings of misery and lonliness, I mean. I don't know if I will live to see it. I have not told my children of the reoccurance of my cancer. How could I on top of their mother's death from the same. I must tell them soon however. I will have to do some kind of evil treatment that will rot me from the inside and make my hair fall out. It will be like a rerun for them - parent in bed, listless, ugly, sucked in as though an alien bug laid a clutch in their father's stomach and they are eating him little by little for snacks and goodies.

How cruel. How sad.

They will survive and they will be strong, but they will carry the scars of this for all of their lives. Orphans before they leave high school. Tough stuff for a kid.

It makes me sick just to sit here and write this. I am not one to condone self pity and here I sit, wallowing in it. Enough. Enough said.

P.

You're Canceled!

I wish I could say that things are getting easier, but, if anything, it is the opposite. I think that right after C died, we were all so grateful that her suffering was over that we felt a sense of relief. In the days since, that balm of relief has faded and a true sense of loss has taken its place. While this is something natural and expected, it is a harder emotion to hold. I feel very fragile at this time. Tears come easily and unexpectedly. I have to be very careful not to snap at the children and I am not always successful.

There seem to be so many details that need to be worked out, forms to be filed. It feels overwhelming at times. Yesterday, I found out that our health insurance had been canceled. I was at the drive-up window at our local pharmacy to pick up a couple of prescriptions and was waiting for the clerk to get them. I had already sent my credit card in through the little pneumatic tube and was surprised when the tinny little speaker croaked to life and a very soft voice asked me to send in my insurance card as well.

I was so used to cruising up and picking up hundreds of dollars of drugs and supplies for C that I never thought that I would be questioned for more information. I complied and sent in the insurance card and settled back into my seat looking at the traffic that was stacking up behind me in the drive-thru lane.

I was shaken from my reverie by the little tin voice again when the anonymous clerk announced that the policy on the card had been canceled on June 1^st.

There are few things that scare me more than having no health insurance. Those few simple words drove a spike of chilled steel right through my heart. I felt pinned to the car seat and unable to move or respond in a coherent manner to the not so patient voice on the other end of the drive-thru speaker.

I asked for my cards back and drove off, leaving the prescriptions and the line of supplicants behind me.

Upon arriving home, I called the customer service hot-line on the back of the now dead insurance card. I had to navigate through the now obligatory automated phone hell menu until I arrived at some queue where I was assured that my call was oh so important and not to hang up because the next available drone would help me soon – or so they promised.

When a human finally replaced the anonymously trendy muzak, she confirmed that the policy had indeed been canceled, though it appeared, erroneously. She said that she would correct that, but it would take 24 to 48 hours for the “paperwork” to clear. That would take care of us until July 1^st at which time we would be duly and truly canceled unless we applied for “survivorship” benefits.

Now, I was starting to get miffed. “Wait” I protested. I was told by C’s employer that all of this was taken care of. Was there no application for these benefits already in the works? Apparently not said she.

Well, this led to lengthy and fruitless voicemail transfers, faxes, emails and follow-ups. After 24 hours of this, I think that we are in the survivorship queue with a “priority” flag, but given the screw-ups I have seen over the last three years of insurance hell, I am dubious.

So, here I sit with a stress level coded at alert “red” and a knot in my back that pains me fiercely. Tomorrow folks start to arrive for C’s memorial which will add to the stress level as we need to manage housing, food, transportation, and entertainment. I know, I shouldn’t worry about it and I wish I could follow my own advice, but I’m stuck with it.

This will pass, I know. But right now, I wish I could just slip into some other state.

P.

Memories in a Shoe Box

Summer is in full swing around here. This is evidenced by the two junior members of the family staying up far into the night and sleeping far into the day. When they are conscious, they are interested in watching TV, talking on the phone with their friends, IM'’ing same, playing computer games and not much else. Chores, talking to their father, or playing outside with the ticks does not seem to be on their dance cards.

I must say that J is being quite involved with the planning for this Saturday'’s luncheon however. He is in frequent contact with the chef regarding the design of the menu and some other things. This is good. He is taking his responsibilities seriously.

K is simply in love with summer (see paragraph 1). She helped work the SP Blues Festival last Saturday. She recruited a friend and they took tickets at the gate. Reportedly, they had a great time. I would have liked to go but I had friends coming down from up north, and others coming over for dinner, so I stayed home and prepared for that.

Yesterday, on Father'’s Day, I went to the Blind Lizard Motorcycle Rallye and Family Picnic which has been my habit for many years. I tried to get my old BMW ready for running, and while it ran, it ran noisily. I tried to set the valve clearances but managed to screw something up in the process, so I arrived and left on an embarrassingly clattery bike that is otherwise known for its quiet running.

The weather was absolutely gorgeous yesterday. Warm, sunny, and not too humid. I am sure that there are many lobster backs today on those who doffed their shirts at the rally. I did not stay very long. I have been feeling unsettled and felt like I had to get back home to do other chores.

There are so many things that C did as a matter of course that I must try to do. I always feel that I am forgetting something. I make myself long lists every day that I try to tick off task by task. Somedays I do better than others, but it doesn’t seem to help when it comes time to sleep. I often wake up in the middle of the night and lay there, empty.

Speaking of lists, I came across another one of C'’s this morning, buried in a little box in her closet under a receipt and four one dollar bills (what were they doing there). It says:

• Stop or go
• What is said is not what happens, can'’t do it
• Wake up ignored
• Love → help
• Not willing to live with consequences
• Illness
• Death
• Violence
• Memory loss
• Want it to work
• Go away & think over

When I come across these cryptic notes, I wonder what do they mean? When a person dies, so much is lost. Clearly, there are the obvious things, but what about the little saved things that are found in shoe boxes put away in a storage room. The pictures of people from an early part of their lives with no titles or explanations on the back. The little mementos that we all save to remind ourselves of a special time, place, or person. When we are not there to remember, what do they turn into? I have a collection of those things now. They are orphaned memories gently packed away by someone who will never again open the box on a rainy afternoon and travel back in time to visit a precious moment.

I miss her so.

P.

What's Next?

Hello Everyone.

I want you all to know that we are doing OK. K and J are spending a lot of time with their various support groups and appear to be doing pretty normal, beginning of summer things – like, not much.

I am trying to deal with all of the little details that need attention. There are documents that need to be located; forms to fill out; people to talk to – all in an attempt to settle C’s estate. Plus, the house demands cleaning, the garden needs weeding, the cars need maintenance, and the dog still sheds.

We are all working on the plans for C’s memorial luncheon. Joe has a long list that he worked out with C’s boss, plus he is working on a slide-show presentation for the event. The details are numerous and growing.

Some of you may be wondering about the future of this website. We started it shortly after C was diagnosed and the main endeavor has been to keep you all abreast on her journey and how it affected the rest of us. Unfortunately, the story does not stop there. As most of you know, I also have cancer and have known about it for twelve years as of tomorrow. While I have written mostly about C over the past three plus years, I will continue on sharing my own story for those who wish to tune in.

Parts will be different – being told in the first person, but most will be the same I suspect. I will write of our life as a family, albeit a slightly gimpy one now that one of our legs is missing. I trust that we will adapt with time. Someone else will exercise more and take up some of the slack. It will never be the same, but that does not mean that it will be bad. Our challenge now is to go forward and find this new way.

I wanted to post a new picture to go with this writing. This is probably the best photograph I have seen of C when she was at the top of her game. It was taken on the patio of the restaurant she helped to build and where her memorial luncheon will take place. She was the happiest I have ever seen her in her role as president of the company she ran for the last five years. I have heard it said that it was such a tragedy to see her cut down when things were going so well, but I prefer to think that C found something that many of us do not – the perfect job and a chance to do it.

Peace,

P. 

Notebooks

C was always a list maker. She kept little notebooks laying around that she would jot things down in for later retrieval. Today, while in our closet rummaging around for a box of “thank you” cards, I came across one of those notebooks.

It is of the 5x7 format and is well used. The cover is worn and dog-eared, as though it had been in and out of purses, carry bags, and briefcases. Most of the entries are undated, though some are identifiable from their context. The entries are a real mixed bag of C’s stream of consciousness, her fixation with financial recording, notes on gardening and landscaping, dinner planning, recipes, and for some reason, the lyrics to Amazing Grace.

I stood there in the dim shadows of the closet, slowly leafing through this most intimate remainder of my love’s interests and thoughts when I came across this undated entry:

end of the treatment

John – what are you going to do with the rest of your life

trip – eat fried shrimp by the ocean

we made it happen

fulfilling my dream

“Make a Wish”

thanks to Mary – group

more beautiful than I could imagine

Collecting sayings about death/wishes

• outlive your memories of doing stupid things
• forget about learning tricky grammar rules – lay/lie
• live each day as if it’s your last
• can’t: be happy every day
  

The last line looks a little shakier than the rest, as though it was added later when she was frailer. Or perhaps it was emotion that overcame her.

All I know is that she was always surprising me. That was one of the secrets to our love – that there was always something around the next corner that could surprise and amaze. Maybe she left me these little things just for that purpose. She was like that.

P.

I'm OK - I think

I wanted to take a break from digging through medical bills and get a word in here.

We are doing OK I think. It is all relative of course, but we are doing what we have to do to take care of the little daily bits of business (like school). After the flurry of family presence that accompanied the week preceding and the few days after C’s death, the house feels very quiet and peaceful during the day when it is just me and Sophie the Wonder Dawg. There seem to be endless little chores that need doing which is fine with me.

I finally worked up the gumption to tackle the medical bill issue. I can tell you now that the reason we pay the highest cost in the world for only mediocre care is that 40% of medical costs go to cover paper and stamps. If our mail carrier didn’t drive a little truck, he/she would certainly be a part of the medical system as a hernia patient. The volume of notifications, bills, not bills, insurance FYI’s, and general communications is obscene.

And that is just the start. When you factor in the letters we have to write when some low-level bureaucrat transposes a couple of numbers as they type and daydream at the same time, the US pulp supply drops ten percent.

Of course, C always handled this in the past. She hated imperfection and accounting errors and would spend hours pouring over explanation of benefit forms and hospital “this is not a bill” (but if you ignore it, you could go to jail). She would pencil in annotations, write firm letters, badger bureaucrats, and generally run a tight financial ship.

Now I must try to pick up the pieces. Where C kept track of this stuff in her head using her nearly infallible memory, I must use spreadsheets. So now, I am in the process of entering all of the important bits (I hope) from the reams of paper that spill out over our cupboards and counters into neat little rows and columns in the hope that I will be able to ascertain what has been paid, what needs to be paid (and by whom), and where the aforementioned nitwit account specialist inadvertently moved a decimal a few places in either direction.

Well, my break is over and I now return to battle. The picture posted at the top of today’s entry shows K at last Sunday’s teen driving clinic. She is piloting my car around and around a wet parking lot in a circular pattern trying to lose control. Her instructor tried to help in the process by randomly pulling on the parking brake handle. She did well and had a great time.

Later.

P. 

Day Two

When I look at my last posting, I have a hard time thinking of replacing it. It describes a pivotal moment in my life, the lives of my children, and a time when the world changed for everyone who knew C. I have such conflicting feelings right now. Part of me wants to hold everything that was C close to my chest and never let go. Part of me recognizes that letting go is probably the healthiest thing I can do. I, and my children, have to find a new way, a new life, a new arrangement. We no longer will be four at the dinner table.

I find myself exhausted but unable to fully rest. I wander through the house picking things up and putting them down. I clean up out of habit. I can’t concentrate. I trust all of this is normal after going through the experiences of the last few days and that I will slowly return to a better functioning level.

Everyone around me has been super. Relatives have come to the house every day and prepared food. I feel like I am sleepwalking and that people are tenderly moving objects out of my way so that I don’t hurt myself. Even my children are taking extra care with me. That alone tells me that I must present a sorry sight.

Thanks to all who have left a comment about C. She clearly touched many lives and her memory will live on in those who knew her.

I will go now because my eyes are “juicy” – a term that K coined when she was about three.

Peace,

Phaedrous

Farewell

At 3:14 AM on June 1, 2006, C M M left this plane to continue her mission of justice and peace somewhere else in the multiverse. Her passing was so bitter sweet. She suffered long and fought hard. In the end, her spirit broke free of a body that had long ago ceased to provide a comfortable and functional home.

She was my true love and I am a much better person for having been in her presence these past twenty or so years. I would like to think that she and I worked each other from the state of rough and ungainly blanks to that of smooth and beautiful gems but I would be disingenuous in doing so. While two people cannot but help change the other over such a long relationship, she had the greater task in that she found her opposite partner far rougher than herself. As in all things, she brought her endless energy, indomitable will, and her keen desire for perfection to bear on the task of molding the imperfect lump of organic matter she found by her side into something more suitable for companionship.

The fact that she failed in her attempt at perfection lies not with her, but with me. Be that as it may, I am closer now and will miss my ongoing lessons.

She left behind an addled husband and two courageous children. K and J were awakened shortly after their mother’s departure and apprised of the situation. They were both calm and measured. They elected to go to school as normal rather than take the day off and have to deal with the shambling mumbler that they sometimes address as Father. As I write this, they are both home – one sleeping and one being a seemingly normal teenager. How do they do it?

I have talked to some of you and left messages for others. It would be impossible to contact everyone who knew C and found a richness there so I will make use of this marvelous new tool of this age and broadcast our celebration of our wife, mother, companion, teacher, guide, friend, and soul-mate.

As per C’s wishes, she will be cremated without ceremony or religious service. There will be a memorial celebration gathering at the T restaurant later this month. More details will follow.

Right now, I am far too wasted on grief, passion, exhaustion, and amazement to continue writing. I will post again soon.

For all of you out there who knew C and wish to share your thoughts or memories, we invite you to leave them here as a comment.

Farewell my love.

P.

Gone

10/11/54 - 06/01/06