Just One More Time

On scales large and small, I have had to re-invent myself any number of times throughout my life.

As a four year old, I had to learn to live with a disability after an accident caused me to lose my right eye.  I had to adjust to my realigned peripheral vision, deal with curious, sometimes rude, people who questioned me about my bandages and then my prosthesis.  In general, I had to learn to become a normal-but-different little girl. 

Each age brought new opportunities to try on different personas.  I never found a perfect fit, because I was interested in so many things that I was like a chameleon.  I could wear a different identity a dozen times a day.  Bookworm, writer, poet, hippie, rebel, compliant, outspoken, shy, tomboy, girly girl, daydreamer, protester, studious, overachiever, slacker, sad, carefree.

Reinvention happened over and over.  Wife.  Mother.  Widow with four children.  Career, advancing from front line entry level to executive. Homeowner, giddy with pride.  Graduate school, 4.0.  Living the good life, traveling, enjoying my grown children, grateful for all of this and my many wonderful friends.  So happy! Then MS and everything starting to slip through my fingers.

More reinvention, in reverse. This disease chipped away at all my selves, gradually stealing my career, independence, dignity, security and, unbelievably, my children.  For my oldest son has slammed the door of his life right in my face.  My younger one told me he couldn’t cope with me being sick, so he just avoids me

MS – the gift that keeps on taking.  As years passed, I was gradually adjusting to these new personas.  I could not accept them or embrace them.  I could not say stupid things like “I am so glad I have MS because it forced me to stop and smell the roses.” (People actually say that!) I could smell the roses just fine before, thank you very much.  I desperately wanted my old life back.  But I was finally acknowledging that was never going to happen.  So I needed to deal with it.  I needed to keep, keep, keep reinventing myself, no matter how much I hated it.

I starting writing again, something I had given up on after college.  Love of words was embedded in my DNA.  Besides being a mother, writing my blog is hands down the most fun, rewarding thing I have ever done for myself.  And with writing came new friends and renewed contact with old friends.  I will never fail to be astonished at the amazing, giving, caring people that surround me.  Their endless affirmation has kept me going.

Then came breast cancer.   Of all the f-ing things.  What is with this, God?!?  I don’t get cancer!!  No one in my family gets cancer.  But I managed to hit the crap lottery again.  Time for a whole new reinvention. The Before Disease, MS, was incurable and painful and cruel.  Cancer can be all that and more.   New vocabulary, new doctors, new procedures.  Lumpectomy, radiation, hormone treatment.  I was not a candidate for chemo, as I had too many health complications.  Chemo could kill the cancer but it was more likely to kill me first.  This was a blow.  But, ok, I’ve dealt with blows before and I will do it again.

It Just Keeps Coming

This week brought news that I must reinvent myself for what will probably be the final time.  The cancer has spread. 

Now I know none of us are getting out of here alive.  I had just hoped for a bit longer than 59 years.  I never thought I would have to reinvent myself as a dying person.

I know it is counterproductive, but in these early days I find myself thinking of all the things I will never do.  I will never have a chance to live in England, which had been a lifelong dream.  I never will publish that novel.  I won’t see my adored grandchildren graduate from high school, marry, start their own families. I will never go to another Springsteen concert.  There are so many books I will never read.  I am crushed by all the fascinating places I will never visit, the wonderful people I will never know, the dear and wonderful people I already have in my life and will never see again. 

Now I must acknowledge my prince will never come.  I will never again have a life partner, someone to help me carry the sorrows and relish the joys.  There is too little life left.

So many nevers.

A dear friend was visiting last week.  She has been resoundingly healthy for most of her 70-odd years.  But this past summer she had surgery that, while serious, should have been very straight forward with an uncomplicated recovery.  It did not work out like that and she is still recuperating.  As she was leaving she said something about her ‘new normal’.  Isn’t it funny, I said, that a ‘new normal’ never means anything good?  We laughed.  But it’s true.  New normals are always about loss and forced change.  They are always about having no choice but learning to do things in a new way, without the normal, and usually beloved, thing that is now gone. 

My new normal is currently an excruciating awareness of my mortality.  Every act, every conversation is fraught with portent.  How much longer?  Is this the last time I will do this, see this, talk to them?

It is very strange, this particular new normal, and I am struggling with this particular reinvention.  

But I am nothing if not stubborn.  I will not go quietly or gently into the night.  Even with my limited capacity, I am going to do as much as I can in as much time as I have.  In my mind I am WILLING the radiation to work.  If sheer force of determination can cure me, I will live forever.  I am heading into cancer kicking and screaming with objections, praying fervently for a cure. 

I am not ready to go just yet.  Stand by for further adventures.  Because we all know there are going to be some.

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These Days

It’s three minutes to two when I glance at the clock. My insides twitch and the split second thought shoots across my brain, “Better get a move on, the work day is almost over.”

But then I remember. I’m not working anymore. People all over the country, all over the world, will look at their clocks and watches and computers at three minutes to two and think they better get a move on. But I’m not one of them. And with that realization my insides twitch even harder.

I am filling my days with cleaning and organizing. But I start one project, make an enormous mess, feel completely overwhelmed and then move on to another one. So the whole house now looks as though I’ve been burgled.

In between organizing, I knit and I read and I write and I job hunt. But those things overwhelm me too and I find I cannot do any of them for more than ten minutes at a time.

The job hunt feels so futile. I applied online for a position with a large managed care company. I sent the electronic submission at 10:58 am. At 11:04 am I received a thanks-but-no-thanks e-mail. The job description fit my résumé almost word for word. Yet somehow it still only took six minutes for them to reject me. I did not feel as though this boded well for my future employment potential. It makes me wonder if there is some secret, subliminal code in my CV that says “Don’t hire her; she’s a loser.” Or maybe there is a Ten Most Unwanted list that Human Resource Departments cross reference.

I am developing a Bad Attitude.

I had lunch with a high school friend that I hadn’t seen in years. Catching up meant many tales of woe. When we came out of the restaurant, I had a flat tire. This sweet woman was so upset for me. But to me, a flat tire is now the equivalent of breaking a nail. It still makes me smile a little bit to think she thought it was a big deal.

Basements full of sewage are a big deal.

No heat during a blizzard is a big deal.

Losing your job is a big deal.

A flat tire? Practically a lucky break.

Not that I’m bitter or anything.

I try to remind myself that life is good.

I still do believe that, but I have to work a little harder at it right now.

On the plus side, it is Spring.

My Journey, Part 2

The second week in August I started feeling an odd sensation gripping my waist, like something was tightly wrapped around my middle. It was hard to take a deep breath and I would be winded after just a few steps. I had incredible pain in my back. The prospect of stairs, never mind the actual fact of having to climb them, practically brought me to tears. I had to attend frequent meetings in another building, down the hill from the main facility where I worked. It was so difficult to walk back up that I found myself actually praying God would get me back without disgracing myself by falling on my face halfway there. He always came through for me, I always made it, although I would be sweating and literally gasping for air. I finally realized I had to do something. So with all the wisdom of my 19 years of education, my 13 years as a nurse and my 50 years of life, I made an appointment at last. With a chiropractor.

To be fair, he listened and gave me a seemingly thorough neurological exam, the results of which should have sent me flying to an emergency room. A test for proprioception, outstretched right pinkie to nose with my eyes closed, overshot my nose and landed at my left eye every single time. Over and over again I missed abysmally. Hmm, he said, rather than the totally appropriate, holy shit!

How long have you had a problem with bradycardia, he asked. Never. Well your pulse is 40. FORTY!? He could not get a blood pressure. These alarming signs still did not send me to the hospital. He said he believed it was the vitamins I had begun taking for the leg spasms I had been having that were keeping me up at night (more ignored symptoms). Ok, if he was selling, I could buy that. He adjusted my spine. I went back for four more visits over two weeks. Then I started having trouble walking. That was on a Thursday. I went to see him Friday night, my legs scissoring as I struggled to put one foot in front of the other. He tested the strength in my toes. My left foot and toes offered no resistance. None. Zero. They were floppy and flaccid. He would not adjust me and said he thought it was time for an MRI. It was actually time for an ambulance, but I was in total denial. He looked at me gravely and asked, “What are you most afraid of?” Because I truly believed there was nothing really wrong with me, there could be nothing wrong with me, I laughed and said, “Well, that I have a debilitating neurological disease that will kill me.” He didn’t smile. Uh-oh.

That night I was fascinated by my useless left foot. My leg was now so weak that I couldn’t lift it to cross it over the other when I was sitting in bed. Saturday I spent cooking for our church picnic the next day. I was dragging my leg as I scuttled around my kitchen like Quasimodo. I went to bed that night all ready for the picnic, still insanely believing, hope against hope, that these were some transient aberrations. I woke up four hours later and could not empty my bladder. I couldn’t walk normally and my right eyelid was drooping so much it was practically closed. Almost my entire body was numb. I finally had had enough.

I got dressed, intending to surruptiously drive myself to the hospital. However, when I opened my bedroom door, the three adult children who lived with me were all still awake and sparky at 3 o’clock in the morning. Indeed, two of them had only just come home. Ahh, to be young. When I emerged fully dressed from my bedroom in the middle of the night, their jaws dropped. They dropped even farther when I told them I, who never even acknowledged a cold, was going to the emergency room. They all wanted to come, but the prospect of that scene, with all their different personalities and coping styles, was like something out of the Marx Brothers. I finally agreed to let my oldest daughter come with me. I still drove, an in-denial control freak to the end. Independent, private. How little I was aware that my existence was about to be irretrievably altered. I was driving straight from the world of ignorant bliss to the world of slap-you-in-the-face chronic illness.

At the hospital, no one seemed particularly upset by my symptoms. Indifferently triaged, I sat in the waiting room for over an hour. Knowing the first thing I would be treated to was a catheter, when I was finally called I cheerfully told my daughter to wait for me there. “A cortisone shot, and I’ll be right out!” She looked at me like I was nuts, but she stayed put.

And then, for the only time besides giving birth 28 and 29 years earlier, I became a hospital patient. Off came the clothes, except OF COURSE for my underwear. I may be Episcopalian now, but the Catholic modesty I was raised with is indelible. On went the threadbare gown, worn previously by untold, and probably unwashed, hordes. Ick. I described my symptoms to a bored physician. I was embarrassed that I had had the numbness in my hands for months but had done virtually nothing, so I said it was “a few weeks”. He asked, when did it start? Because I was too stupid to make my answers match my prevarication, I honestly answered May. This was now the last week in August. “MAY! That’s MONTHS!” he exclaimed, as though I had committed murder. “O.K., well its still weeks.” I meekly replied. I told him about the urinary hesitancy (which implies seconds but had been over an hour) and he immediately ordered the dreaded catheter. Goodbye knickers. I tried to get out of it, because I had finally managed to go, but clinically I knew they needed to evaluate any urinary retention. My nurse came in with the sterile kit and introduced himself. He seemed to be nice man and I had no doubt of his competence. But I said something I would not have been capable of a few years earlier: “Can I please have a female nurse?” He was very gracious and accommodating, but definitely looked disappointed, which I found a trifle creepy. Later, when it was time for it to be removed, he popped his head in, snapping on gloves. “Is it ok if I take it out?” My head said “What on EARTH makes you think if I didn’t want you to put it in I would be perfectly fine with you taking it out?!?!?!” But I was forced by years of good breeding to sweetly say, “Would you mind terribly if I had a female nurse again.” Oy vey. He did not look as accommodating this time, but a lovely woman came in and disconnected me. I couldn’t get my bloomers back on fast enough.

Now Mary Kate could come be with me. One of the staff went to get her and my girl walked in with a steaming container of tea that she had gotten for me, unasked. She is truly the perfect child. It was the best thing I had ever tasted, a cup of normalcy. We sat and watched Hurricane Katrina cruelly descend on New Orleans. But my mind was careening. What was wrong with me? Did I have a brain tumor? Did I have Lou Gehrig’s disease? Did I have AIDS from those accidental needle sticks at work years earlier, or careless love with the wrong person? A CT scan was done, blood was taken. The doctor came back. The blood work and CT scan were telling them nothing and, as I still couldn’t walk, or feel, they were admitting me for more testing. “But”, he said blithely, right in front of my dear, pale, loving daughter, “we are probably looking at Multiple Sclerosis.” And he breezed out.

I was stunned, but for all the wrong reasons. I had a brand new job and no sick time. They didn’t know me well enough yet to be aware I NEVER took off sick from work. I couldn’t be admitted! Additionally, because I could not take sick time yet, I would not get paid for any time off and would be losing money every day. On the other hand, I was almost relieved. I could give up trying to pretend I was well and finally get help. The words “Multiple Sclerosis” did not even register. Mary Kate began straightening my sheets and smoothing them over my legs. I looked up at her and she was crying. Taking her in my arms, we held each other and shook.

Next: Testing, testing and more testing. And a steady diet of humiliation.