Internal Struggles

Up until four years ago, my struggles were external. First I struggled against my parents, then against my ex. Having removed all external barriers to my having a life, I fell over with nothing left to push against. I have been wandering listlessly for the past 3 years or so. I am slowly dragging myself back to center, although it’s harder to find.

I was recently informed that my struggles are now internal. I now push against that part of me that I internalized from how I was raised, etc. So my parents may be dead, and I may be all grown up and out on my own, but they live within me. The judgmental, unkind, unsupportive parts of them. Internally, I am as abused as I was growing up. I give myself very little support, rage against my actions if I deem them stupid, and basically cut myself very little slack. I am kinder to the birds who feast on my feeders than I am to myself.

I was always worried that I could not financially support myself. It took me two years to find my current job after having moved 3000 miles across the country to start a new life. I didn’t have all the information about the job market when I moved. It was not as I had hoped or expected. I lived off savings for those first two years, terrified I would lose my home and wind up on the street. I finally found this job. I must drive 40 minutes each way, 5 days a week. Before this I had been a contractor for 24 years, working from home, making my own hours. This new permanent job was a huge adjustment for me. 8-hour days, 5 days a week, no negotiating, no telecommuting. The East Coast is not as flexible as the West Coast. My knee was the first to act up from all the sitting at the desk. They say sitting is the new smoking as far as shortening your life span. I gained 10 more pounds during that first year. And they pay me very well.

I have now been at this job for almost two years. The first year I wowed them with all I accomplished, which to me was not that big a deal. Having been a contractor in the boom years in Silicon Valley, I was used to working 3 contracts simultaneously, on projects that were the bleeding edge. It was an exciting time. And I made lots of money. Didn’t save a penny, but bought lots of musical instruments as music was my passion. Went to expensive spiritual retreats as my spiritual path kept me in search of healing all my childhood wounds, and owned half a house that I considered my nest egg for the future.

This second year has been spent reading novels online and playing solitaire. Occasionally a project appears that requires my attention, but they are few and far between. The morale in the company is in the toilet. People’s egos have been ground under by the owner, who is a narcissistic control freak. I am the only professional female in the company. All the other women are in support roles. I feel like I have stepped back into the 1950’s. This place is the last place I ever thought I’d find myself working. I had dreams of starting something new when I moved here, of somehow finally getting away from the computer industry. But after two years of sending out resumes for all types of jobs, this was the only thing I could find that paid enough to support both myself and my wife, who is on disability. It also offered multi-state insurance, allowing her to continue to see her doctors in her home state who have been keeping her alive these past 6.5 years.

I felt very grateful for this job that first year. Now I feel guilty for sitting here collecting a paycheck for very little output. I feel disgusted to be in a place like this after being part of the exciting Silicon Valley boom. I also know that Silicon Valley is no longer like it was in my day. Even if I still lived there I wouldn’t be doing what I did back then. I have lost my enthusiasm along with all the other beaten-down, depressed people working here. No one ever thanks you for your efforts. No one gets pay raises. There is no real HR department looking out for employees. There are under 50 people here. They run lean and mean and actually yell at people and threaten them when the mood strikes them. There are no employee guidelines.

And then after 8 hours in that environment, I drive home to my wife, who has been dealing with Stage IV Lung Cancer for 6.5 years. She is doing very well at the moment. It’s all about the moments. We live from test to test. The latest round of tests were so good that she doesn’t go again for 4.5 months – a new record! I never know how much energy she will have when I get home. Years of radiation treatment have caused overwhelming fatigue, and zaps to her brain have limited her short-term memory. We might have a wonderful, deep discussion, but I never know if she will remember it. I never know if she will have an appetite. The daily chemo pill ruins her appetite.

I haven’t played music since I moved here almost 4 years ago. My drums and harp are gathering dust. I used to suffer if I didn’t play something. Now, I just don’t play at all. I just started reading books again. I am an avid reader, but just couldn’t bring myself to open a book until the last 6 months. I berate myself for not putting in the effort to get back to my music. But mostly I feel tired and overwhelmed with everything I have had to do these past 4 years to redo my life. Too exhausted to drag myself back to center. But I really need to. I really want to.

So in the midst of all this, who can I turn to for support? Certainly not myself. I feel very much alone in the world. My wife, whose kindness saved my life, has her plate pretty full. My friends in the West have full plates too and not a whole lot of understanding for my current life. And local friends? Who has the energy to find them? And forget my family. They were never there for me. My brothers were raised by the same parents. One brother died last year. The remaining brother is a shell of a person.

I have no choice but to make peace with myself. I really need myself at this point in my life. There is no one else. I need me to be kind, supportive, patient and understanding. It might take the rest of my life to get there. I guess that’s why they call it an inner struggle.

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Orphaned

I seem to be in a lull. My wife’s last round of tests were negative for cancer activity so we get to rest for 3 months. Now that I have all this time available, my grief from losing my parents has bubbled up. Yes it’s been 4 years, but I haven’t had a whole lotta “me” time since moving here.

I am feeling very alone in the world. I have no one to call. Not that my parents ever understood my life or had much to offer, but they existed. I could call them. When life was good. When life was challenging. My heart has felt so pained by all this that I went to my doc to make sure there were no health issues. Even got an EKG as a baseline. Everything checked out fine. So I called my ex-sister-in-law last night. I told her I needed her to be the person I call now. She understood. She lost both parents too. She is only a year older. She said we will go through the rest of our lives together, sharing the aging process. It was comforting.

So I am taking care of myself, but I am still feeling overwhelmed by sadness and grief. I just never expected it because I had such a difficult relationship with my parents. They hurt me and disappointed me too many times to count. But they loved me the best they were capable of, even if it wasn’t enough for me at the time. And then I married someone just like them. She loved me but was not capable of loving me the way I needed. My current wife is everything I ever wanted and needed, and she has Stage IV lung cancer. The world works in mysterious ways.

So I don’t have a lot of “me” time because my focus is usually on my wife. And when I do, I drown in grief and sadness. Would like some joy mixed in there from time to time. I gained 50 pounds in the last 4 years. I ate my way through all the changes and stresses. My Facebook post from 4 years ago on this day was that I lost 30 pounds in that past year eating healthy and exercising. It is time for me to drop this weight yet again. Eating through stress is not helpful. Gotta get back to meditation. I am starting by going on my treadmill each evening after I get home from work. It actually cheers me up. I will take it slow like I did the last time, although I think this time will be even slower with the desk job and the post-menopausal metabolism. Slow and steady wins the waistline.

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Falling Apart

My neighbor died. The nation died. The heaviness of the sadness in me is never-ending. Drowning in internal tears. Pema Chodron’s When Things Fall Apart would be perfect for me to reread right now. The inmates are running the asylum.

I am not surprised our country is filled with racist, sexist and homophobic people. Just because we have been gaining our rights and freedoms in the past few years does not mean all those other people died, moved to Canada or had a sudden awakening of heart. It just meant they went underground to plan on how to get their world back. Their world is still slipping away. Their time is still passing. But they are going to stick it to us before they are forced to go. One either rises up from the muck or falls back down. One must rise up on one’s own, not by standing on the shoulders of others by oppressing them, hating them, or using them. They would like to drag us back down into the muck with them.

I have run out of uplifting, pithy sayings. I mourn for this country. I mourn for us all. Hatred is not a good environment for anyone, regardless of how you voted. This whole atmosphere breaks my heart on a daily basis. How humans can treat humans the way we do is just so demoralizing. The Dali Lama says we are all the same. We are all human beings. Hating another human being is like hating yourself. We all hurt. We all fear.

I do not know how to heal this country. The hatred and divisiveness have been here forever. Racism, sexism and homophobia do not ever go away. People bury it behind smiling faces. I surrender, Universe, G-d, whatever you call yourself. This world has lost its way. The grand experiment has failed. Those Four Horsemen must be cinching up their saddles. The Phoenix is at the spa getting its feathers fluffed.

My neighbor’s smiling face and laughter have been in my mind since she died last week.  I miss her.

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Like a Phoenix we will rise from the ashes of despair. And soar.

Tomorrow Is Another Day, Really?

In the midst of all my processing about death as far as my family is concerned, I am still the caregiver for my wife, and her Stage IV Lung Cancer. Her brain has been zapped with radiation 30 times in the past 6 years. That’s 30 individual zaps to 30 specific brain lesions. That, in addition to the radiation they threw at her chest 3 years ago, leaves her very fatigued and a little fuzzy in the brain department. So she usually asks me to help her with big things. Like last night.

We went to the car dealership so she could lease a new car. Her car is 10 years old and not really suited for New England winters. She settled on a Subaru Forester. We got them to give her everything she wanted in the monthly payment range she wanted. I hate car places. You can’t just walk in and buy a car like you would buy a dress off the rack. All that dickering is such BS. But this place didn’t do that, which was a huge relief.

Anyway, we get to the part where they are telling us what will happen in the three years when the lease is up. The great deal she will be able to get for the next car she will lease, etc. And I am sitting there thinking, three years is a long way aways. I am thinking that with a lease, I can just return the car after she dies. I don’t have to deal with loan payments, etc. Really awful, dark thoughts. I hate those thoughts. I did not share them, but I know she was thinking the same things.

How many more tomorrows? I know, in reality, any of us can be hit by a bus, get a massive heart attack, etc. But we get to live blissfully in denial. When the Sword of Damocles, that would be the cancer, is dangling over your head, there is no blissful denial. There is only this moment. That’s all you got. That’s all you can be sure of. And you better make the most of that moment.

So she will pick up the new car this week and drive it blissfully south to visit her 5-month-old grandson. And I am very happy it will be in the new, all-wheel-drive Subaru, with the best safety rating. Tagrisso (daily chemo pill) plus Subaru equals more time, more bliss.

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The Spirit In The Sky

I was away for the weekend and the evening’s entertainment was a medium, a person who talks to the departed. This woman was the real thing. She didn’t talk to anyone, didn’t ask any questions of anyone in the audience. She simply started talking and people would raise their hands when it sounded like Uncle Ralph or Grandma Shirley. We were told to only say yes, no or maybe in response to whatever she said. Not to give any further info. I was the second to last person of the evening to get attention. I was beginning to think no one would show up. But she perfectly described my parents. Even said my recently deceased brother was with my mother, which made sense since they are two peas in a pod.

The message my parents, especially my mother, wanted me to get was how sorry they were for how I was treated and raised. My mother said she had no clue how to raise children. She desperately asked for my forgiveness. I thought I had done this on her death bed. I had experienced her spirit there. Her personality had already left. I told her I loved her and said she loved me back, and for the first time in my life I really felt it. It was very healing for me.

But here is her spirit, after the fact, asking for my forgiveness. Now I always thought once you die, your spirit is what remains, your spirit without your personality. The pure spirit of light. So, how was it that this medium was describing my parents as they were before death? Very confusing. And, to be honest, it made me angry. Forgiveness is not my strongest ability. I tend to carry a grudge. I tend to be rather untrusting. My initial reaction is, sure, forgive you. Help you to feel better. Help you to be at peace. But what about me? How does my forgiving you erase a lifetime of pain, disappointment, and disillusionment at her hands?

And I know the right answer is, in forgiving her, I can finally let go of the lifetime of pain so the rest of my life stands a chance. Easier said then done. But that’s why they invented therapy.

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It’s An Epidemic

Everywhere I look, so many people I talk to are losing people left and right. Their old friends, cousins, aunts, uncles, previous spouses. The rug has been pulled out from under. I spoke to a woman in her early 80’s. I asked her if you ever get used to loss? No. It becomes a part of who you are. You live with it.

I have run out of tools. Get used to it? Really? Live with it? Well, she’s got a point there. It does appear to be an unshakable truth. Everybody dies. They just never taught me what to do about it. I have studied several spiritual perspectives over the years. I know all about the wheel and how you have to work towards enlightenment to get off it. I know the story about us all carrying a spec of g-d in us so g-d can know itself better when we die and return the spec with all the data we amassed during our lifetime. So much easier to read about. Way harder to live it.

I remember reading something like this about George Harrison. Now we all know you can’t believe much of what you read, but it stuck with me all these years. George Harrison was very spiritual. He built his later years all around his beliefs. The article claims that on his death bed he lost faith and felt cheated by his beliefs. Shocking. And, I get it.

I have felt lost for several years now. Ever since my parents died within 6 months of each other. I recently perused a couple of books on grief. Seems this is a symptom of grief – feeling hopeless and directionless. I suppose I should feel relieved that this is part of a well-known process and some day it will pass and I will be able to move on with my life. But right now, I have no sense of any such possible completion. Right now I am simply drowning in this loss, this fact that nothing lasts, that nothing stays the same.

Did I mention I tend to feel the need to control? This new concept of nothing lasting or staying the same has completely shot control to bits. So I guess underneath all this anger is the total terror that there is no such thing as control. Damn. Should have read the fine print.

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And Another

My neighbor Patricia is dying. She was my neighbor on the West Coast in the Sierras for 8 years. We got very close during that time. She was dealing with Multiple Myeloma. It is hard being this far away. Her world consisted of all the creatures of the forest, literally. She named them, fed them, and counted on their returning from season to season. She also rescued giant parrots from around the globe. She spent the last few years raising enough cash for the rescue organization to care for them for the rest of their lives. Her last course of chemo made her brain swell. They didn’t know it was the chemo until too late. She must have been trying for one more miracle. I know they had been trying different chemos the past few years as their potency waned.

This vibrant woman of the woods is now reduced to a wheelchair, with slurred speech and out of control anxiety. She has hospice care 24/7, a sure sign the end is near. I feel like every where I look anymore, someone is dying. The nature of the world as you approach 60, I guess. Life really gets reduced down to what is really important. I just bought a couple of books on grief. Hopefully, there is something within those pages to bring some comfort.

Right now my wife’s daily chemo pill is working. She started 6 years ago with a round of chemo, the kind they give you intravenously. Then after 3.5 years it came back in her chest so they gave her another round of a slightly different cocktail and bombarded her chest with radiation. Once that was done she started the first chemo pill, Tarceva. It was supposed to get into her brain and stop the brain lesions. It didn’t. She is now on the second type of chemo pill, Tagrisso. It is showing signs it is getting into her brain, but we won’t be sure until November’s round of tests. Of course, according to the docs, we can never be sure what exactly is working. Drives me crazy.

And then I go to that dark place, the place  I call The Pit. The place of fears of the unknown. We don’t know what is available should this pill prove to not be useful. All the new immunotherapy drugs do not work for her EGFR type of lung cancer. The whole current trend will be of no use for her. I dread the day we have to cast about for a miracle drug. I don’t want her to wind up like my neighbor. Wouldn’t it be better to be yourself and let go, rather than grasp madly about with the risk of being totally decimated in the last months of your life? The cancer will already do a fine job of decimating you in the end without the help of extra poisons. When is it time to say enough? I hope we don’t get to that point for a very long time.

Be at peace, Patricia.

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