Good Grief!

Reprinted from PN/Paraplegia News October 2013

A progressive disease like multiple sclerosis can drag a person through the grief process again and again.

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In 1969, Elisabeth Kübler-Ross, MD, identified five stages of grief: denial, anger, bargaining, sadness (or depression) and acceptance.

She hypothesized that a person facing an impending, terrible fate will experience some or all of these phases. However, they need not be felt in any particular order, nor do all of them have to appear.

Each of us is challenged with losses in our lives that can put us on an emotional rollercoaster: Death, divorce and illness each does its share to age us prematurely.

My First Bout

Enter multiple sclerosis, which I refer to as ms (written in lower-case, no-respect letters). I also have several other choice names for the unwanted house guest, but I’ll mutter them solely to myself, as the pages of this magazine aren’t flame-proof.

I’ve often bragged about all the perks that this devouring pestilence offers its chosen few, but I recently became aware of yet another set of rails upon which I’ve been riding for some time (I didn’t even know I was on a train).

Since ms is a progressive disease, I’ve experienced a steady loss of function throughout my body since the 1996 diagnosis. The first major symptoms I experienced were paresthesia (numbness) in most of my body and optic neuritis (blindness) in my left eye. Thus began my first bout with grief.

Denial to Acceptance

A native New Yorker, I’d been an enthusiastic and proficient walker.

Anyone who’s ever been to the “Big Apple” knows the three primary modes of conveyance there are public transportation, taxis and feet.

I walked several miles each day rather than wait for a train or bus, or spend my inheritance on cab fare. The bottoms of my feet were so callused that my father suggested nailing horseshoes to them to save the cost of buying regular footwear. Thanks, Dad.

Soon after the diagnosis, I felt a growing weakness in my right leg and developed a noticeable limp. During a visit to Epcot Center in Orlando, Fla., in 1996, it was suggested I buy a cane.

The souvenir shops sold them, but I refused to accept the need for any kind of walking assistance. Within six months, I grudgingly admitted that my gait needed help and I ended up with a dozen canes.

Denial to acceptance, I had climbed every emotional step on the grief ladder.

I Really Am Disabled!

After a few more years, walking became riskier with a cane alone.

In December 2011, I fell and broke two ribs (ouch!). A four-wheel walker has prevented additional plunges, but it also symbolizes another funeral. What did I ever do to get gravity so angry with me?

After recently boarding my conversion van (a chore that requires acrobatics almost worthy of Cirque du Soleil), I had an epiphany as I sat behind the wheel, chest heaving as if I had run a marathon race.

I looked in the mirror and saw a pair of tired eyes staring back at me as I suddenly recognized, “Wow! I really am that disabled!”

I saw I had downplayed the increasing weakness in my right side, convincing myself I could move that arm or leg at will if I wanted to. But why wouldn’t I want to? It was denial.

Another Grief Ride

The very nature of a progressive, disabling disease means loss upon loss.

Every body part or system that weakens or fails can restart the grieving cycle, and a person with this type of disease faces the potential of always being down.

Living with ms or any chronic, progressive condition presents constant challenges to daily tasks, which are made more difficult to deal with if the person is depressed. Admitting the extent of my disability plunged me into a funk that made me more aware of my mortality.

Before long, I accepted my situation and emerged from this fog. My favorite song had become Frank Sinatra’s It Was a Very Good Year.

A progressive disease such as ms can drag a person through the grief process again and again. Each time the thief steals something else, the mind has to deal with that loss, which can affect a person as deeply as the death of a loved one. Every casualty boards you on yet another grief ride.

More Shocks

I’d been familiar with Kübler-Ross’ explanation of the grief process and thought I was prepared for the challenges of ms. But I didn’t foresee having to experience the cycle multiple times. In fact, I now know that ms can stand for “many surprises” or “more shocks.”

I think of all the things I could’ve done differently that might have prevented ms, but one can’t unburn the roast. Perhaps I’ll carry the lessons into my next life.

When asked if she believed in reincarnation, Eleanor Roosevelt answered, “You know, I don’t think it would be any more bizarre for me to show up in another life than it was to show up in this one.”

Maybe my next life will come with the discovery of cures for all manner of illnesses. We’ll just have to wait and see. I’ll let you know when I come back.


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Good Grief!


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