For as long as we both shall live.

"In sickness and in health."

At Oswald West State Park
on the Oregon coast, 2013

When most brides and grooms utter those words, they are basking in the youthful glow of health, the sickness part of the vow likely decades away.

In just over two weeks, my fiancé John and I will also recite those momentous words, well aware the bride is struggling with a chronic, debilitating disease, multiple sclerosis.

At the risk of sounding self-deprecating, why in the world would John want to take this— meaning me--on? It is a question I've asked myself many times. And I have reminded John, only half jokingly, "You know, it's not too late to run?"

The simple and true answer is, of course, that he loves me.  It doesn’t hurt that he also has a helper’s mindset with a mechanical engineer’s creativity for designing and building problem-solving devices.  In fact, I think John is happiest when he is constructing tools to make my life easier.

I could give many examples—the gas-nozzle opener that gives my weak hands more leverage or the cedar couch “cane” that helps me stand up from the futon—but my favorite has to be the beach chariot, as he has dubbed it. I can no longer walk on sand, and wheelchair tires won't roll there, either, so John is building the chariot to give me access to the beach.

The human-powered contraption likely will prompt a few laughs as we put it to use during our honeymoon touring the Oregon coast next month. Imagine a rickshaw with balloon tires, carrying a wooden platform on which the bride will sit in a teal-green lawn chair.

 In all seriousness, many a long-term relationship has abruptly ended after a spouse was diagnosed with MS or other serious condition. Some partners have even admitted they did not want to take on such a burden--and there really is no other word for it. Degenerative conditions are, indeed, burdens.

 John certainly isn’t sticking around because of my always-sparkling personality, either. I have great compassion for myself, and I can be difficult to live with when I am having an especially hard day, struggling mightily to do simple tasks that most people don’t think twice about (putting on shoes or pulling up zippers, for example).

For me, it comes back to the question of whether a human being has value, regardless of physical condition, or any other condition, for that matter: mental, emotional, you name it.

And what does it mean to love someone anyway? If it means to pick up her feet, one step at a time, so she can get to the second-floor bedroom at the end of the day when her body is tired, then John loves me.

If it means sometimes helping pull up her pants because she needs both hands to hang onto something immovable in order to stay upright, then John loves me.

It's what we humans have done, I suspect, for as long as we have walked the planet. We take care of each other.

I regret that I won’t be able to reciprocate in the same way for John. I have to trust that just being will be enough.

Welcome to my new blog

With my muse Raven

Friends and acquaintances often tell me I'm inspirational. Those fighting chronic disease, whether cancer, lupus, or multiple sclerosis, as in my case, hear these words regularly. They are well-meaning, and I always appreciate the sentiment behind them.

But I don't want to be inspirational anymore. I'm tired of being courageous, brave, uplifting—all words frequently used to describe those struggling with physical challenges. I just want to be able to stand on my own two feet, literally, without falling down.

Welcome to my new blog, Gimp Girl. In this forum, I will share my experiences as a formally able-bodied individual living in a now physically disabled body.

I have several reasons for writing the blog. One, in my small way I would like to raise awareness about the challenges those with disabilities—particularly the physical kind, as that is what I know best—face in an able-bodied person's world.

Further, as a writer I feel a pull to share my experiences with fighting a chronic disease. "Write what you know," writing teachers tell students. So that is what I will do.

And I have lots of time on my hands these days, having just made the decision to leave work as a college English instructor 10 years earlier than anticipated due to increasing physical challenges.

 

Kayaking on Puget Sound near Olympia, WA

So here I sit, trying to reimagine my life without the daily structure from a career that defined me for so many years. Do I still have worth and value as a human being, particularly in our  "success"-obsessed culture, without work? Can I find a new avocation to avoid withering away? Do I even need to?

As I feel my world shrinking further from MS’s incessant toll, and I can longer participate in activities I once loved—cycling, gardening, and hiking, just to name a few—how do I avoid wallowing in self-pity and resentment, thereby pushing friends away? I used to never think about, let alone utter, the words "giving up." Now I shout them out whenever I am fighting to stay vertical.  

I previously wrote a column for my then-local newspaper about living with a disability but felt the need to be careful about how much I revealed. I was still working and did not want to be viewed as compromised and possibly risk my job status. Obviously, I have no such concerns anymore.

I chose my blog's title because it is catchy and edgy. I am well aware the word "gimp" has negative connotations around physical disability and therefore is considered politically incorrect. That is kind of my point because I want to challenge preconceived notions about who the physically disabled are.

 And, ironically (considering the title), I do not want to be defined by my disability. Instead, let me take that word and show you what a gimp looks like, who she is.  If you read future blogs entries, you won't always find me inspirational or uplifting— likely, just the opposite.

But that's true for any of our lives, isn't it? I hope you keep reading anyway.