Flip-Flop, Finale: Coming Full Circle

“Where there was mystery, there is knowledge; where there was fear, there is love.” --Jennifer Worth, author of Call the Midwife.

My four-month odyssey has come to its inevitable end. After being diagnosed with metastasized lung cancer in February, my mother passed away peacefully on May 13, 2014.

The odyssey has been that of an MSer taking on the role of caregiver for a sick parent. My previous four essays focused on mom and our interactions and impressions as she journeyed through her final illness. Now I want to share what has happened to me on my MS journey through all of this.

Before mom got sick, I was an MSer retired on disability, bored, self-absorbed, brooding over my daily discomforts and limitations, newly separated and perusing online dating sites. What worried me most was my nagging insecurity about being independent and capable. My former husband had greased the wheels for me for several years, doing all the shopping and housework, fixing what I couldn’t manage. Living with mom had been a comforting transition into singlehood, easing the sting of abandonment. I had a loving supportive mom, and the mental and emotional space to deal with the aftermath.

When mom got sick in January and needed me for most everything, I immediately jumped into care-giving mode. Five weeks later, we delivered her into professional care. I was left with nothing to do and no one at home. My MS did not worsen under stress. It stayed the same.

What has happened to me during these months alone? Two distinctly separate things: grieving for my mother and fearing the irrevocable changes that I faced, and at the same time, thoroughly enjoying my new independence. I put myself on two waiting lists for low-income senior housing. The prospect of being on my own excited me, I looked forward to it. At the same time, I looked backward and grieved over the losses, so many losses. I was newly divorced from my first husband when I moved in with mom in 1994 and had my first MS attack in 1999 with no diagnosis. Beginning in 2005, I got the official MS diagnosis after waiting for six long years; then in rapid succession, I lost a job, filed bankruptcy, lost health insurance, struggled to maintain temp jobs, then retired on disability income in 2009, followed by more physical decline that prevented me from engaging my passions for gardening, playing flute and piano, and doing interior design projects. My brief second marriage fell apart. Finally, I lost my mother, and soon, I’ll lose our home. But what have I gained?

Through my mother, I’ve gained plenty. She gave me the tools to become as independent and as capable as she had been. I didn’t realize it until recently. One night, two weeks after she entered hospice, she told me she was ready to die. Feeling as though my heart was being torn in two, I tearfully gave her my blessing to let go. How could I go on without her? But after I left her bedside and walked to my car, the trees, the birds, the wind, the scent of the spring earth all sharply hit my senses for the first time in a long while. It’s time to join the world again, Kim, I heard my mother warble, time for you to really fly now, little bird.All by yourself. And it didn’t scare me. I felt an opening up, buoyed, heartened, grateful, humble. Nature had been my mother’s religion, and I have shared her love of gardening, bird-watching, the sound of a flowing creek, pushing my hands into cool, moist dirt. I had shut out those things during the past few years; the pain of not being able to physically engage those interests had made me shut myself off from them. I’ve been angry about it. Now these things remind me of mom. It’s impossible to feel anger.

I should have said that through my mother’s dying have I realized my gains.  Her absence was necessary for me to start realizing her influence and how capable I really am to be on my own. Those few months she was away gave me a glimpse of how things will be from now on. Though most of my experiences have been positive, i.e., shopping by myself, carrying bags into the house, doing housework, cooking, there was scary stuff, too.

Several weeks ago, on our first really warm, humid day, I drove for twenty minutes in a hot car and arrived at a store to shop, only to be suddenly severely impaired by the heat as soon as I took a few steps away from the car. Not only had I instantly developed severe foot drop in both feet, I felt so off-balance and dizzy that, once inside the store, I had to ask an employee to fetch the item I wanted. I teetered at the check-out and almost fell sideways twice, catching myself with the cane. It took an eternity to walk the ten or so yards from the exit to my car, and once home, I plopped in my chair and sat motionless for an hour, crying. Although my symptoms returned to baseline after that hour, I didn’t recover emotionally for several hours. I was scared, unhinged. It was the only time in four months that I wished someone had been with me. And it was a reminder to be very careful because I am alone most of the time. And something else: I did not call a friend to come and console me. It didn’t occur to me, I didn’t need it. I’m okay.

An amusing thing happened, too. I was looking for a putty knife to scrape up some cracked bathtub glazing and couldn’t remember where mom kept it. So I opened the silverware drawer and grabbed a butter knife. I noticed a white spot of dried paint on the tip of the blade and smiled. Mom had used that same knife for a scraping project.

She’s in my blood, that woman. In so many ways. As is writing. Chronicling what it feels like to be alive.

“For what is joy if it goes unrecorded, and what is love if it is not shared? "--Jennifer Worth

And finally, words of wisdom from my mother after my first MS attack:

“Kim, you’ve got two choices: either laugh or take the gas pipe. It’s up to you.” --Nancy Dolce

Apparently I took that to heart, because I started writing a book about coping with MS and the death of vaudeville.

But that’s another story.

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