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The Reality of Being Single and Chronically Ill We Need to Talk About

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The other day I was on the phone speaking with a lawyer. Gasp! I know, an actual real live phone conversation, not a text! What is the world coming to?

We came to the point in the discussion where I was asked some questions like these:

Lawyer: How old are you?

Me: 40-something. (hidden to protect the aging and innocent)

Lawyer: Married, widowed, divorced, never married?

Me: Single, never married.

Lawyer: How is that possible?

Enero sits at desk on the phone blinking several times without speaking.

Me: (after a good long pause) It is possible because I was focused on my education and career.

My first reaction was to say WTF; however, I did not. Then, why is that his reaction? Why is being single at my age so weird and not normal for the majority?

My answer is simple: “My priority was to be true to myself.  I chose to pursue my dreams and goals, education and career first.” When relationships came along that was awesome too; but, my first priority was to be true to me and do what I wanted to do: Live my passions and make them real. When we were children, we all wanted to be something when we grew up and even as adult children, we don’t stop dreaming of the future. For me, a girl from a small town in Missouri, I can remember wanting to be a rock star one summer, a movie star the next — sometimes a truck driver with a gold and black truck. (My handle was “Goldie.” I think I may have watched too many “B.J. and The Bear” episodes?)

Another great flashblack took place during grade school. I was sitting outside at recess in a creepy, multi-level root system of this great ancient tree, brainstorming horror films with a few of my classmates.

My point?  Not once at this time did my imagination weave a yarn including a married with children storyline — and this has stayed true for most of my adult life.

Adulting has included the full-time work and school combo, plus some internships and freelance gigs with an occasional relationship here and there. It was and is a beautiful yet sometimes exhausting balancing act of creative pursuit.

I am not anti-relationship or marriage; but, I am also OK with me, myself and I. I adore my friends’ kids and family units — this was just not my focus.  And so, I fall into the Hetero-Queer category and I am quite all right with that, as are many of my other single friends.

The only time it becomes not OK is when we are forced into a relationship with a chronic illness, a selfish partner that didn’t even bother to take us out to dinner and a movie first. How rude!

I have read many an article or blog entry about living with an illness like multiple sclerosis, and how the eventual need to stop working occurs, as it does for some of us. When that happens, where do we turn?

In most of these stories we hear the voices of the married or partnered, but the tale of the singles is silent. The chronically ill with husbands, wives and partners at their side are sometimes able to step down to part- or less-than-part-time status because that financial (and emotional) support is there. Not that it is easy, but it is something versus nothing at all.

The Singles — well — we do not have this option. Our families are often far away, and really, moving back in with the parent(s), while the offer is incredibly kind and unconditionally loving and awesome of them, can destroy your soul. Most likely they now live in a city that is foreign to us. Not to mention, every place and everyone we know as adults, the friends who have become our “framily,” would now be across the country. This is very sad and very depressing. Almost as sad and depressing as the frustration upon realizing we no longer can do the work we once did at the rate we did. It is a recipe for “roll up in a ball and cry for days,” although we do not do that very often. Because we can’t.

As warriors, single or partnered, we commonly swallow our tears and pride and bottle up the depression and keep on trudging. I am not sure I know the solution, but I do know the support in the U.S. for the elderly and disabled is not sufficient.

We did not ask for these illnesses that caused the detour in our life path, and we definitely should not be penalized for taking the road less traveled with independence, passion and creative focus. We did it because it was what we were meant to do.

Ideally, in the world of “make-believe” we would live in a country where we could work the hours we are able, single or not, and receive the “difference” in the form of a subsidy from the government. We should not have to:

  • Move back in with the parents
  • Stay in a relationship that is unhealthy
  • Partner up to be financially stable
  • Live in poverty while on disability or while working less than full-time

Someday, maybe the world of “make-believe” will be real. Maybe countries around the world will fix their broken systems. Maybe all the chronically ill, singles and elderly will build “tiny home communities in lands where fertile cannabis farms and organic produce sustains the economic and financial health of the group over time.

It is a nice thought to dream of, while lounging under the clear night skies of childhood as shooting stars phase far and wide across the universe.

This blog was originally published on Modern Day MS.

Originally published: August 30, 2016
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