Ain't dead yet...

With friend and teaching partner,
Dr. Courtney Shah, at my final
commencement as a faculty member,
June 22, 2014

For the first time in some 45 years, I am no longer working.

June 23 was the first day of my unofficial—but permanent—retirement from a coveted position as a tenured instructor of English at a community college in Washington.

Technically, I am on medical leave, due to increasing disability from multiple sclerosis, until that runs out early next year. But for all intents and purposes, I will not be returning to my job. This coming Thursday, I will head into the local Social Security office to apply for disability.

I had hoped to make it to 62, to continue contributing to my retirement plan, to continue feathering my financial nest to provide for a more comfortable, post-working life. My body had other plans, however. At the tender age of 55, I am done.

As my colleagues returned to work last Monday, catching up after the long summer break while rushing to print syllabi and lesson plans for the first week of school, I was alone, missing both them and the frenzy, and wondering what to do now.

I have always worked, from the time I was about 10 and picking strawberries, a rite of passage for Baby Boomers who grew up in Oregon's fertile Willamette Valley.  I had my own yard work business when I was 13 while most of my peers were at summer camp or home watching TV. Throughout high school, I had an after-school job as a box girl and then checker at the Safeway down the hill from my childhood home.

I paid for much of my college education from my summer wages at Salem fruit canneries processing the berries I once used to pick. Post-college jobs included newspaper reporter, small business co-owner, free-lance writer, and instructor of English at two community colleges.

Now instead of rushing off to class, I am alone in a quiet house in an even quieter neighborhood on the shores of South Puget Sound. 

And I am left wondering can and will I work again. I still have all the mental skills and knowledge gained over four and a half decades, supplemented by the wisdom that comes to virtually all who make it to middle age. I am not ready to be put out to pasture.

The question is, how can I put those skills to use with a body that increasingly feels like a prison.

With dear friend Cindy Miller in the Astoria bike shop

 I co-founded

I know I am not alone; we are legion, those of us with disabilities and a lifetime’s worth of skills and knowledge.  We are not ready to be put out to pasture.

I know that many would envy my early "retirement." But I want to work, I want to contribute in a meaningful way, in spite of my disability--or maybe because of it.

Then there is the economic reality.  I am grateful that I likely will have the disability-benefits parachute—and I say "likely" because qualifying for the benefits is never a foregone conclusion, even for someone in my condition. But assuming I do get them, the benefits will amount to less than half my former take-home pay. Needless to say, I also will likely not be able to contribute to my retirement anymore, a financial double-whammy.

No, I am not ready to be put out to pasture.

So I sit. And wonder. And hope.

Update: On Oct. 11, just a little over two weeks after my appointment with Social Security, I received notification that I had been approved for disability. My payments will begin in January, but I still won’t be eligible for Medicare until January 2017. Nonetheless, I am relieved, to say the least, and glad that I won't have to go through the appeals process, as many applicants do. I guess that’s a silver lining to having an obvious and well-recognized disability.

Life, liberty, and the pursuit of health

I never expected to have to write these words in 2014 in the United States of America: I have filed a complaint with the federal Department of Justice against The Valley Athletic Club in Olympia for non-compliance with the Americans with Disabilities Act.

Swimming in Lake Chelan, WA

The issue is that the 11,000-member club does not provide access to the club's two swimming pools for people who cannot stand or walk. I am not in this category, by the way, but as someone fighting multiple sclerosis,  I hold access issues near and dear to my heart.

Being able to get into a swimming pool may seem frivolous, unless it is the only form of exercise a person can do. That is the case for hundreds of thousands, if not millions, of Americans with physical disabilities.

The  Valley—a behemoth of a club boasting expensive, state-of-the-art exercise equipment in several workout rooms, as well as an indoor and outdoor pool, an in-house spa, a deli, and a childcare facility—claims that installing a poolside chairlift would be prohibitively expensive.

The club does provide an unwieldy set of portable stairs for those, like me, who can navigate them. But if you can't, forget about swimming.

And even if you can, forget about swimming laps during the club's prime times, as the club recently instituted a policy that the stairs would only be installed for so-called "therapy swim" during non-peak times. The stairs take up a good ten or so feet of a swimming lane, but they can be removed as soon as a swimmer is in the water.

Why do I feel as if I am being shunted into the dark corners of the club?

It might be just coincidence, but the club instituted the no-stairs-during-peak-times after I contacted the facility's two managers to request the club purchase a poolside lift system, as many other pools have. The managers told me that the club's 1970s-era pools would require extensive—and expensive--work for such a lift to be installed. In other words, no can do.

 This in a day and age when the United States has a law called the Americans with Disabilities Act, written to protect all citizens against discrimination due to disability:

"The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities [my emphasis], and transportation."

A 2010 revision to the law even addresses pool accommodations. Specifically, the law requires pools to provide a lift  when it is "easily accomplishable without much difficulty or expense." Obviously, those words are open to interpretation, but again, consider that we are talking about an 11,000-member, facility. The IRS even allows a tax deduction for such expenses.

The law also addresses the issue of a facility such as The Valley segregating lap swimmers with disabilities into separate swim times. The 2010 revisions require that pool lifts remain in place "during all times the pool is open to the public…

“Allowing [facilities] to store lifts and only take them out on request places unnecessary additional burdens on people with disabilities."

By implication, that would certainly seem to include leaving portable stairs in place, especially when there is no lift available.

Why not just join another club, you might ask. I canceled my membership at The Valley first thing the next morning after the club refused to bring out the portable stairs when I requested them; I am looking for another health facility.

That said, The Valley is far and away the best athletic club in the region, and it is reasonably priced. Furthermore, suggesting I join another facility is beside the point. Why should I or any other lap swimmers with disabilities have to?

Why not just use the pool during the so-called therapy swim times? One, the therapy swims (a term which frankly sounds demeaning to this former high school competitive swimmer) are scheduled when my husband is unavailable to help me. And, again, this is beside the point; other swimmers can use the pools whenever the club is open.

Why should a private business be forced to spend money to help just a handful of individuals? It’s unfair and unreasonable to expect a business to shell out money for a service that will benefit only a very few.

First, I suspect more than a few would benefit. But, again, that is beside the point. The club is flaunting the law, plain and simple.

Are we not all our brothers’ and sisters’ keepers? Think about that the next time you go to work out; then imagine a big door being slammed shut in your face.

Update: Three days after this incident, the health club has gone back to bringing the portable steps out on request at any time, not just during "therapy swims." The management and owner are looking into what it would take to install a chairlift. In other words, we're back where we started. I told one of the managers that if and when they get the chairlift, please let me know so that if the Department of Justice does contact me, I can tell them the issue has been resolved. I have to believe there is a way for a club with the resources of this one to do this.

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.