Using It, Still Losing It

23843263_sSo here’s the background. When home computers first became available, I was smitten. (Yes, children, there was time when personal computing was but a glint in Knot’s beady little eye.) Wow! I could do amazing things, I could write a program in BASIC to balance my checkbook!

A few years later I was in a fellow grad student’s lab in the biology department of the university in Los Angeles, and he showed me how he had this new thing on his computer where he could exchange data with a computer in Washington D.C.! And he had a stylus that he moved around on a special flat surface and he showed me how to used it. I could move the computer cursor with a magic wand!

Another few years and I was working in a high-tech company started by a couple of physicists that developed and produced collimators. They had an astonishing program on one of the engineer’s computers that could send telexes without the telex machine! I was the only non-engineer allowed to use it.

I was paddling around in a sea of tech-ish delight. I never took courses, but I learned on my own and by watching people who knew what they were doing. In the 1990s and 2000s I was very competent with both hardware and software. My hobby brought me to the little niche of providing computer advice to nuns around the country, sometimes visiting their convents to set up networks and solve their connectivity issues. I even wrote a database management app in MS Access that handled the medical, psycho-social and educational records of the children in a residential facility for severely brain-damaged children that is still in use today.

In short, I spent the first four decades or so of personal computing developing “mad skillz” in everything informatic. But, as Bobby and Shirley Womack wrote and the Rolling Stones and others sang, “It’s all over now.” (The image breaks down quickly unless you consider informatics my cheating girlfriend, but never mind.)

Yesterday I decided to start in on digitalizing my household records of the past seven years. I got one of my helpers to work with me on the project. The idea was to scan everything into searchable files and save them on my hard drive with backups everywhere on God’s green earth and above it (I’m not a fool), then shred the paper. Save space in the house, be able to produce old documents on demand, making it easier for me now and for whoever needs to sort out my affairs when I die. Not a big deal, right? Easy peasy, right?

Not exactly. I forgot how my home scanner settings work. I forgot how to scan to a pdf instead of a jpg or bmp. I forgot how to make new sub-directories. I forgot the quick way to rename a file. I got confused in the middle and forgot what we were doing. I was a touch past the brink of tears. My helper became frustrated with me and started bossily telling me how to do things her way.

I saw my not-too-distant future and I was deeply saddened alongside my intense frustration. This was undeniable evidence of my slowly increasing cognitive impairment. (Like just now, for example, when I couldn’t remember the phrase “cognitive impairment” and had to google around a bit, trying lots of different words until I found it.)

My neurologist and GP don’t believe me. (I am getting really tired of singing that song, but it’s not the subject of this post.) The MMST* administered by my neurologist didn’t really show anything, but acing the MMST doesn’t require very high functioning. The fact that I had to stop my work as a translator after having achieved a certain status in my niche field doesn’t seem to count. The frustration that brings me to tears is not significant to them.

A few people, including one of my doctors, have told me that if your pre-impairment baseline was higher than average then your impairment is an average person’s usual functioning. They intend for that to comfort me. It does not.

I am trying to reframe what is happening to me as an opportunity to cast off my intellect-dependent self-image and identity and turn to other qualities to define myself: emotions, empathy, perseverance, endurance, generosity, kindness, and so on. So far, it’s not working.



* The Mini Mental Status Test.
Image copyright:  Andrea Danti

What Was Taken, What Remains

Rosebud dyingCancer is a thief, a cowardly thief. A mugger. A highway robber. Cancer waits at the side of the road until you walk by, just going about the business of living, and swoops down to denude you of almost everything. It’s an ambush.

What did cancer steal from me?

* my physical integrity
* my independence
* my good health
* my work
* some of my friends
* my freedom of movement
* the joy of making lace with beautiful fine threads
* my immune system
* life without constant pain
* my trust in my mental abilities
* my self-confidence
* my body image
* my physical stamina
* my ability to concentrate

Cancer stripped me and left me wounded at the side of the road.

Sometimes I feel angry about that. I’m not angry today. Today I feel a kind of sad nostalgia for my old life, my old self. I was confident, responsible, a take-charge woman. Today I am hesitant, fearful, dependent. Today I need drugs to function. The California university campus in the 1970s didn’t turn me into a druggie; cancer did. I take drugs to manage the pain every day. I take anti-depressant drugs. Sometimes I take anti-anxiety drugs and sometimes I take drugs to help me sleep. Who is this woman I’ve become?

When I stopped treatment I expected to die very soon after. Several years have passed and I am still alive. Alive, but diminished and slowly losing ground. I’m glad I’m alive. I love life. I am learning to appreciate life and living. Don’t you dare say that cancer was a gift or a blessing. It was not. It is not. I am learning to appreciate life and living not because of cancer, but in spite of it. I have known adversity in my life, and cancer is an ongoing adverse event. I am learning to live according to my beliefs in spite of everything cancer throws at me.

What beliefs? Which ones in particular?

* that my life on earth is temporary and eternal life awaits
* that my feelings are not the boss of me
* that love is something you do, not something you feel
* that I am responsible for my actions
* that God created me with all my emotions – and saw that it was good
* that all human beings are equal and equally loved by their Creator
* that I can choose my attitude
* that I am not helpless, not a hostage to circumstance
* that money and status are nice, but are not the most important things
* that I am not in control of most things, but I do have control of myself
* that forgiving others helps me more than them
* that I am very imperfect but I still have the capacity to change

It’s all a process. Sometimes I feel like Xena: Warrior Princess and at other times I feel like Anne of Green Gables – sometimes both in the course of an afternoon. That’s okay. One of the freedoms that comes with knowing that life will be much shorter than I would have preferred is the freedom to accept and love myself in all my different states. To love myself even when—especially when—I don’t fit into a neatly circumscribed box.

Yes, I do feel kind of nostalgic for the woman I used to be and the life I used to live, but it’s not a bad feeling. It is a bit like the last verse of the song that Ervin Drake wrote and Frank Sinatra sang:

But now the days are short, I’m in the autumn of my years
And I think of my life as vintage wine
From fine old kegs
From the brim to the dregs
It poured sweet and clear
It was a very good year.


Image copyright: Nicholas Piccillo

Birthday Thoughts: On Turning Sixty

NowWeAreSixWhen I was a teenager my little brother was pretty sure I wouldn’t make it to 21.

When I was 28 a plane I was on had to make an emergency landing, and I was pretty sure I wouldn’t see 29.

For an infinitely long split second when I was in my early 30s I thought I had died in a bomb attack.

When I was 48 and I got word that my breast cancer had metastasized I was pretty sure that even if I should see 50, I certainly wouldn’t see 55.

Last year, I didn’t think I’d see Christmas.

But….

Unbelievably, today is my sixtieth birthday. According to Auntie Wiki, some other things also happened in March of 1955. Jim Henson built the first version of Kermit the Frog. Fifteen-year-old Claudette Clovin refused to give up her seat on a bus in Montgomery, Alabama to a white woman, and was shackled, kicked and harassed as the police carried her away. Elvis Presley made his first television performance.  Peter Pan was presented on American television with the original stage cast.

Also in 1955: the Salk polio vaccine received full approval from the American Food and Drug Administration, Ray Kroc opened the first McDonald’s, and the first Hebrew-speaking Catholic parish was created in Israel.

1955 was a very good year.

Two years ago, I wrote:

It hit me suddenly today – I’ll be fifty-eight in two days. Will I live to see my next birthday? There is a good chance that I will not. The odds that I’ll reach the age of sixty are minuscule.

While I was writing today’s post I had a moment of clarity: for the last two years and a bit, ever since the bone mets started getting worse, I have oriented myself toward death. I’ve been thinking about dying, preparing to die, resenting death, accepting death, longing for death, running from death… I have allowed death to define me, have allowed this disease to define me.

A couple of weeks ago I was talking to my spiritual companion and asked him “How do you prepare to die?” “You don’t,” he replied and I sighed to myself. Doesn’t he get it yet? “You live,” he continued. “The question is how to live.” I dropped the issue because I was pretty sure he was clueless. I felt misunderstood and devalued.

Oops. As I’ve found over the years, it sometimes takes a while for important remarks to sink in. I rejected his remark off hand, but I was wrong. How to live is the question.  How to live a full life, “pressed down, shaken together and running over”, without slipping into that false positivity that is nothing more than denial, the permanent grin that is the mark of a bliss ninny. Instead it means that I accept what I cannot change (metastatic breast cancer) and change what I can – my attitude.

That is my challenge as I begin my seventh decade on this earth. I want to be in charge of my feelings, my attitude. I fully expect that I will have times of anger, frustration, depression, helpless feelings; of course I will. The difference is that I want to acknowledge the feelings and not let them be the boss of me. I have been working on this for a long time, as anyone who reads this blog regularly knows, but now I am going to make it more of a priority. I don’t expect it to be easy and I probably won’t be consistent at first, but that’s okay. I’ll be gentle with myself when I blow it and start again.

I think this is one the best things about myself. (It’s my birthday so I am allowed a little brag, right?) I am sixty years old, an age that for most of my life sounded so old, and I can still work on myself, change myself, accept criticism (albeit not immediately), and act on it. My body is stiff, but my spirit is still flexible. Happy birthday, me!

 

Seeing Mah, by Natosha Safo. A guest post.

I read this post over at Guerrilla Aging – Navigating the Third Half of Life and I am reposting it here with the permission of both the author and the blog owner.

Although I’m still in my fifties, I’ve already been introduced to the curbs that are inexplicably higher than they used to be, and the young people who mumble and swallow their words, and the doctors who look like they’re not old enough to drive, and the numbers on watches that have shrunken somehow, and in general living in a world that is spinning so fast I that I can hardly keep up. But I’m still young enough to look at really old people with pity liberally laced with admiration for the way they cope.

This post by Natosha Safo spoke loudly to me. Please let our guest writer know how you like it. 

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(For reasons that are none of your GD business) I don’t really cry that much anymore.

Well, I was just at the pharmacy and there was an elderly woman in line, her cane in her shopping cart, leaning on the cart for balance. When she walked up she looked at me, smiled brightly and said, “Hello! How are you today?”

Yes, I love old people, but something about her … I just wanted to call her “Mah” or “Moomah” like I called my mom, Johnnie. I guess she kinda looks like what I imagine Johnnie would look like if she hadn’t died so young.

She gets to the counter finally and while she’s talking to the cashier I determine she has diabetes and maybe Parkinson’s? I can’t take my eyes off of her. After collecting the scripts she was picking up she pulls three or four empty prescriptions out of her bag and asks the cashier if she can fill them yet or is it too early. The cream in the tube, she explains, is for her feet and the tube is so small it doesn’t last very long, is it too early to refill that one?

Then … she bends down, lower than she is already stooped, and wipes tears that escape from her eyes. Oh god. Seriously, the tears come rushing down my own face! I’m thinking, what the hell am I going to do if the answer is no?! I will absolutely LOSE MY SHIT up here in this Walgreen’s pharmacy!

Thankfully the cashier leans over and quickly says, “Its alright, yes, you can get this one refilled now.” I quickly dig in my bag for a Kleenex and wipe the tears off of my face before “Mah” turns around and sees me. I still watch her though. The cashier rings up all of her purchases and “Mah” needs $0.93 more. She reaches into her bag, pulls out a Ziplock full of change and with a shaky hand passes it to the cashier to count out.

I jump up while the cashier’s back is turned and offer a single dollar, tell her to keep her change, I know what its like when you have to dig into the coin bag. Go ahead and hold on to that for when you might need it next. She looks up at me and is genuinely surprised and taken aback. I put my hand on her back and say, Merry Christmas before I sit back down in the waiting area. She wishes me the same and gathers her purchases and goes on her way.

I hold it together long enough to pay for my stuff, follow her in the parking lot sneakily to make sure she isn’t mugged or anything, see that she is safely in the car with whoever was driving her, and then cry the whole drive home.

And I’m still crying.

I hate feeling like this

Sometimes I just can’t tell the difference between being in touch with my feelings and expressing them appropriately – or playing the Stage IV card and milking it for all it’s worth. I’m having a rotten week or so and you, Internet, are the lucky puppy who gets to hear all about it.

First of all someone I care about a great deal is going through a terrible life-changing passage right now and I can’t do anything to help. That makes me feel helpless as well grieving for the losses in my friend’s life.

Next. Remember my friend who was found dead, murdered, in his home? I have had to be involved in some of the settling of his affairs because I was listed as next of kin. This week I had to pay a large bill to the water company for water usage after his death. The company does not care that he is dead and the flat is empty and doesn’t belong to me. They dunned me anyway. (My lawyer is on it.) This added to my feelings of impotence and frustration and grief.

Then there’s been my health. Mundane little health things, not cancer. I had a little bit of a fever (which is an issue because of the low neutrophil count) and stomach problems. I stumbled and hurt (fractured?) another toe. My chronic cough worsened (probably because of staying in bed with the fever). Nothing dramatic, just enough to make me feel like something you’d scrape off the bottom of your shoe. The stupid toe hurts and so do various other joints. The weather’s changing and I’m not twenty anymore.

And the pain, of course. (We’re on to the cancer now, if you’re playing along at home.) The bone pain is increasing to the point where I don’t know how much longer I’ll be able to cope without narcotics. I’m taking maximum daily doses of Advil supplemented with something called Tramadex (known as Tramadol in the US). It is a very weak  μ-opioid receptor agonist but provides pain relief similar to that of codeine, which I can’t take, and I don’t react to it badly as I do to stronger opioids. But I think I’m coming to the end of that road. Not sure what the next step will be.

What else is driving me nuts? Well, since you asked…

  • My house is not as clean (spotless) as I’d like it to be. I don’t have the strength or balance to do any more than I’m doing, and my household helper can only do so much in the hours I can afford to pay him.
  • My eyes are not as good as they used to be, which means that I have had to give up making lace. I still hope I’ll be able to take it up again, but the knitting I’m doing instead just isn’t the same. (Though it is very cool that I knitted my first pair of socks with a turned heel.)
  • My attention span is shorter and more variable than it used to be, which means I can do even less work than I used to do. Ditto my memory.

None of this is as bad as what many other people are dealing with – bringing us back to my drama queendom. I was hesitant about posting this for that very reason, but decided to go ahead. Why? Because when I started this blog I made a decision that I would be as honest and transparent as prudence allows, and that means sometimes showing these less attractive view of my life.

Thanks for being here.