Should I Stay or Should I Go

Marriage is a coin flip in the USA with half of all marriages ending in divorce. Living with Multiple Sclerosis is certainly not going to improve the odds of success.

Back in 2009 I read a study, “Men leave: Separation and divorce far more common when the wife is the patient” which concluded that “A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis”

In other words, marriage and Multiple Sclerosis do not go together like a horse and carriage.

When “inquiring minds” assume that me staying has something do to with marriage vows, I find myself wagging a proverbial finger at them. 28 years ago, our wedding vows in 1985 DID NOT include “in sickness and in health until death do us part”.

A little back story here may be helpful. Patti married for love a couple years earlier with all the traditional vows bells and whistles. Her first marriage became abusive and ended.

As for me, after 10 years on the road with touring rock n roll performers, I wanted to settle down. Unfortunately for me, the person I was in love with was in love with another guy.

Patti and I had no prior history; we grew up states apart. In an early 80’s version of "Facebook" we met each other through ‘friends of friends’. Learning that Patti was having problems separating from an abusive husband, bouncing from one co-workers’ apartment after another while filing for divorce, I offered her to share mine since I was away half the year.

Since I was a wee lad, aspiring to be a knight errant has only gotten me into trouble.

Anyway, one thing led to another and Patti became pregnant. Getting married seemed the right thing to do ‘for the sake of the child’. In another twist, Patti miscarriaged just a month or two before the wedding and yes, this was also the year Patti was first diagnosed with ‘probable MS’.

Have you ever tried to mourn the death of a dream? Shared grief bonded us greater than vows.

The only time I ever explored divorce was in the early 90’s. Juggling increasingly progressive spouse caregiving duties while simultaneously trying to basically single parent our daughter, I found myself wondering if our daughter’s future might not better be served by the attention of two able bodied, able minded and dual income parents. A lawyer explained to me that the only way a male could file for divorce and retain custody of a child in Maryland was if I was some “civic saint” and Patti was in jail or legally incompetent. A chronic disabling illness that  prevented her from caring for her child did not qualify.

The ‘what about me’ psychobabble of the late 20th Century lacked any solutions. I reached back in time for a philosophy to make this work. Stoicism seemed to make sense and I began trying to live a life of a stoic indifference to my own existence.

I get that some people living with MS do not tax their families or at least that is the portrayed ‘idea’ of MS – it’s a struggle but people can live with it. As a friend with MS recently put it contrary to the image of MS read about in media or seen on television, “the usual course of MS is disability, no job, no fun, loneliness, and suffering.”

Our remaining decades have been exactly that and more. Ever had to teach a pre-teen daughter about the menstrual cycle while her Mom lay on the floor where she fell, smeared in menstrual blood? That’s living with MS as a family.

Patti never chose to have MS and with progression she no longer even awoke with free will. I on the other hand woke every morning with the choice, should I stay or should I go, but somehow always settled on how can I make living with MS better for our family today?

Over the decades I have known MS spouse caregivers who have left and others who stay. It’s not mine to judge right or wrong. Just as every person with MS is different, every spouse caregiver is different.

I believe it comes down to ‘who you are’ not ‘what you promised’.

Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.

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