I Shouldn't Be Enjoying This so Much

In June 2009, I finally conceded that MS had kicked my butt, and retired from my day job. I’d heard the stories about people who, when suddenly confronted with so much unstructured time, acquired bad habits. Chewing slippers, recreational barking, peeing in the house, and similar. Having known for several months that the inevitable was not far off, but determined not to succumb to such vices, I’d been preparing a list of things I could do after I retired. Some were things I needed to get done, but had just never managed to finish. Others were things I enjoyed doing, but that my day job didn’t seem to leave time for. All were things I could do from my power chair, no hands required, with no (or minimal) assistance. The list was longer than you’d think, although I can’t tell you what was on it. I didn’t ever refer to it much. I just went looking for it, just now, just for grins, but couldn’t find it (although I got sidetracked, and then got sidetracked from the sidetrack, and so just spent several hours doing things that were totally unrelated to whatever it was I set out to do. This happens a lot.). In the 3 1/2 years since I retired, I’m pretty sure I haven’t checked anything off of that list.

The shameful truth is that I rather enjoy having absolutely nothing to do. Total indolence really suits me.

My mother always said, “You expect to be waited on hand and foot.” Now I am, literally, waited on hand and foot, and although I hate it, I’m afraid I don’t hate it is much as I ought to. I suspect this makes me a bad person, but I’m not sure what I can do about it.

A whole day with no commitments, nothing I have to do, far from inducing apprehension or anxiety, is something I look forward to. A good thing, because most days are like that.

What do I do all day? Good question. I’m not sure. A little of this, a little of that. Whatever I start, it doesn’t take long before I get sidetracked, and then get sidetracked from the sidetrack. Then I look up, and it’s getting dark. Yeah, I know it’s January, and this is Seattle, so that could be right after lunch. But still. What can I say? I’m easily entertained.

Looking at my almost entirely empty calendar, I see nothing until… let's see… Friday.

Perfect.

Balancing Act

Balancing my checkbook is a job I find myself saving for a time when I need to feel like I have control over something. When I can't do anything about anything else, I can balance my checkbook. I can be totally obsessive about chasing down that three cent discrepancy. I can make the numbers line up. This is something I can do.

On my retirement income this is not a task for the faint of heart, mind. Like watching a train wreck, it can really get my heart racing. When I still had my day job, I could be reasonably confident that the balance, when I got to the bottom of the page, would be positive. Now it's somewhat more exciting. The number at the bottom of the page is another thing I can't entirely control, but whatever its value, I can sure as heck make sure the bank thinks it's the same as I do.

I need to balance my checkbook.

Greyhound Gig

One of the things on my list of Things to Do After I Retire was to volunteer for something. It seemed like a good idea. Isn't that what everybody says they're going to do after they retire? One ought to make a contribution somehow, oughtn't one, even if one isn't paid for it? The trick would be finding something I can actually do.

The obvious victim was Greyhound Pets, Inc. Scarecrow and I have volunteered with this group since we adopted our first retired racer in 1997, but haven't been as active lately as we used to be. We used to host regular meet-and-greets at local pet supply stores and a nearby shopping center, and I can't do that very well anymore. We played music for their annual adoption fair, and I can't do that anymore at all. Their current webmaster has everything under control, thankyouverymuch. I wouldn't be much help at the kennel. It was not entirely clear to me what I could do, volunteer-wise.

As it turns out, GPI needs a newsletter editor.

Hey, I can do that!

Ironically, since we lost our last greyhound a couple of months ago, I'm editing The Bark. I don't think I'm overcommitted. Due to budgetary constraints, it only comes out twice a year and it's only 16 pages long. There are three people working on it. The next issue doesn't come out until November. It's not a high-stress job. I can do this.

It's kind of nice to have a deadline again.

Time Flies...

One year ago today was my last day of gainful employment.

It's not an anniversary to celebrate. I wasn't ready to retire. Although my job wasn't my passion -- I was a tech writer, for Pete's sake -- it was interesting, challenging, and I was good at it. It accounted for much of my self image, provided most of my social interactions, and was a reliable source of nerdy techie toys. And, of course, there was the paycheck.

Sometimes I think I should've thrown in the towel sooner than I did. Other times I wonder how I managed to hang on so long.

Other than the significant and painful drop in income, I expected the transition from working to not to be more painful than it was. Since I was already working in a remote, empty office at Bob's Books and Day Care Center, the only difference in my day-to-day routine was that I didn't do any work. Every morning the realization that I don't have to actually accomplish anything still comes as a real relief. I still feel guilty about not having to do any work, and about feeling relieved that I don't have to do any work.

At first, I spent a lot of time getting disentangled from my former day job, and getting disability insurance and SSDI set up. Since then, I'm afraid I've been lamentably indolent. I have made no inroads on the lists of things I thought I would do after I retired. I expected to be bored, but I haven't been. Perhaps I'm just easily amused.

They say time flies when you're having fun. I must be having fun.

The Library Shelf

Reading books is hard work these days. Turning pages can be a real struggle; by the time I manage it, I've lost track of the story. Flipping back to the previous page just ain't going to happen, so I forge ahead, but I'm always afraid I'm missing something. Paperbacks can be particularly tricky to handle, and let's face it, everything is paperback these days. Books in electronic format are a lot easier to read for the dexterity-challenged, but not everything is available as an e-book yet.

Besides, I like real books. I like the cover art, the texture of the paper, the design of the typeface, the layout of the page, the feel of it in my hands (I can't really feel much anymore, but I have a good memory, and a good imagination). I like being able to mark my place with a bookmark from Munro's books in Victoria, BC, or Jocundry's in East Lansing, Michigan (is Jocundry's still there, I wonder?), and see how many pages I have left to read. Sometimes it's just worth it, even if I need help turning pages. Fortunately for me, Scarecrow is willing to put up with a lot. Since he had some time off work over the holidays and was just hanging around the house, I took advantage of his willingness to do this.

I wasn't reading anything edifying or high-minded. I read for fun. I admit I don't often give books the amount of thought they deserve; I read the way most people watch TV. My library shelf is entertaining rather than impressive. I just finished Wolf Hall by Hilary Mantel. Before that, Endangered Species by Nevada Barr, Pillars of the Earth by Ken Follett, Her Fearful Symmetry by Audrey Niffenegger, The Help by Kathryn Stockett, Roadside Crosses by Jeffery Deaver, Still Life by Louise Penny, not necessarily in that order. I'm currently reading New York by Edward Rutherfurd. I've got Push by Sapphire and An Illustrated Atlas of the Civil War waiting on the shelf when I'm done. And I bought Scarecrow a copy of Unseen Academicals by Terry Pratchett for solstice. When he's done with it, I'll drop everything else and read that next. I'm seriously due for a Terry Pratchett fix.

I'm still new enough to retirement that I feel vaguely guilty about spending all this time reading for fun; isn't there something else I should be doing? For the first time in my life, the answer is No.

In some respects, acknowledging that I have nothing better to do is painful. In other ways, it's something I might be able to get used to.

Pinching Pennies

Today I finally get to cancel our family cell phone service. I've really been looking forward to this. (Sounds kind of pathetic, I guess, but hey, you've got to get excited about the little things.) We had a pretty cheap plan for three phones, but since I can't use a regular phone anymore I thought I'd see if we couldn't do better with a plan for just two phones. Looking back over the last couple of statements to see how much we used the darn things, I found we were averaging, maybe, 10 minutes a month for the three of us. We don't talk on the phone much. So, yeah. We switched two of the phones to pay-as-you-go, and today I get to cancel the service.

While our house has been torn apart, we've had a bunch of stuff stashed in a self-storage place. I thought it would only be for a month or two, but it's been a year. In the next week or two, our remodel should be close enough to being done that we can get that stuff out of there. I'm really looking forward to that, too.

As an aside, if you can get along without something for a year, you've got to wonder how bad you really need it. There've been surprisingly few things we wished, at some point, we had handy, and only one or two items we needed badly enough to go down and retrieve. I think there's a lesson lurking in this somewhere...

While it seems kind of Scrooge-ish to be looking for ways to pinch pennies this time of year, the transition from gainful employment to retirement benefits made some significant changes in our budget. We've had to distinguish between what we need, what we want, and what we really can do without. I'm not sure that's bad. We can do without cell phone service we don't use. We don't need to rent a storage shed for stuff we don't need. With my birthday, my dad's birthday, Tuffy's birthday, solstice, and my brother's birthday coming one after the other, it's easy to get crazy. Tuffy's tuition is due in January. Let's keep our priorities straight. We'll still buy presents. We just won't be spending money for the sake of spending money. We'll try to focus on what we're celebrating, and why.

Now, if you'll excuse me, I have to cancel my cell phone service...

Virtual Friday

It's funny that I still think of weekends as weekends. Even though I go in to work every day with Scarecrow, it's not like I do any. Still, Scarecrow doesn't have to work tomorrow, so today's a virtual Friday. I still like them.

The chore for today was signing up to continue health insurance coverage for Rowan and me under COBRA. With the 60% American Recovery and Reinvestment Act subsidy it's still going to cost more than I paid as an employee, but not nearly as much as I had feared. Of course, the subsidy only lasts nine months, but you can just call me Scarlett -- I'll think about that tomorrow.

The chore for tomorrow is to renew my Disabled Parking permit. The task itself is no big deal; Scarecrow will just stop in at the doctor's office for a signature. It's just odd to think that it's been five years since I got the darn thing. When I got it I could still walk, a little, using Scarecrow's arm for support. I could still drive, getting my manual wheelchair in and out of the car myself. I still had a day job, and went in to work every day. I brought home a paycheck that I'd earned with my own little hands. I could still play music. Recreationally. At least, it was recreation for me. My family would probably have called annoying noise -- it was a banjo, after all -- but they were kind enough to put up with it. (I might also mention that I have accumulated a serious pile of annoyance credits. Scarecrow plays accordion.)

It's realizations like this that sneak up and smack you upside the head, sometimes. You're going along, doing an everyday chore, minding your own business, and whap.

I need to stop and think about that for awhile.

Bob's Books and Adult Day Care Center

If I'm retired, why do I still go to work 8:30-5:30 M-F?

It's a little hard to explain, even to myself. It's the result of a twisted combination of unusual circumstances. The short it answer is: You do what you gotta do.

Here's the deal. Scarecrow works for a book distributor. It's a company of, maybe, six people, working in a warehouse full of books, with some offices along one wall. There are more offices than there are people. There is also an accessible bathroom. Scarecrow's employer (Bob) lets me use one of the empty offices, and his Internet connection, during the day. So I go in to work with Scarecrow. I read, pay bills, blog, watch movies, whatever. Scarecrow has an office upstairs. If I need anything (like help getting in and out of the bathroom), I send him an IM. When Scarecrow is finished for the day, we go home. So I go to work every day, even though it's not my work, and I don't actually do any.

Trying to untangle the unlikely chain of circumstances that evolved into this routine makes my head hurt.

It started when I stopped driving. Getting to work -- my work -- by public transportation was such a pain in the butt that I started working from home. I worked for a network software company, for Pete's sake. If I couldn't work from home, who could? That was OK as long as I could still get in and out of our tiny, disability-hostile bathroom by myself.

Then, couple of winters ago, our part of town lost power for about a week. (It was nine days, actually, but seemed longer.) I couldn't work from home. Since it was way too cold to sit around in a dark, unheated house, I went in to work with Scarecrow. I took my laptop, camped out in an empty office, and found that I could work as well from the warehouse as I could from home. Better, even, because of the accessible bathroom. Our power eventually came back on, but I kept going in to work with Scarecrow.

Since I retired, I still go in to work with Scarecrow. I just don't do any work.

My employer was amazing for letting me do this for as long as I did. I was lucky to have a job where it was possible. I was lucky Scarecrow had a job where it was possible. Scarecrow's employer was amazing for letting me do this, and for allowing Scarecrow the flexibility to help me out during the day. Each of these circumstances, taken alone, is kind of unlikely. Having them all occur together still has me shaking my head in amazement. It's not a solution you could ever plan. But you do what you gotta do, and that's what we did.

So it's Saturday. It still seems like a weekend to me!

The Bright Side of Getting Laid Off

Technically, tomorrow is my last day of gainful employment. I've been using up unused sick time, accumulated vacation time, and short-term disability since the middle of June, but I was still technically an employee. After tomorrow, I won't be.

The benefits lady called to prepare me for the termination letter, so I wouldn't feel bad when I got it. She's nice that way. In talking about some of the paper that would need to be shuffled during this transition, she mentioned the American Recovery and Reinvestment Act subsidy for COBRA expenses. I told her I didn't think I was eligible. The deal is that ARRA subsidizes 60% of the cost of health insurance under COBRA if you're laid off. When the stimulus package was first passed, I checked with the MS Society to see if I would be eligible if I retired on disability. Reading the language in the act, it didn't look like I would be. The MS Society concurred.

The benefits lady said it was all rather confusing. She went off to check with a couple of people.

Well.

According to my employer, this is not a voluntary termination. I would continue to work if I could. They're laying me off because I can't. And since they're laying me off, I'm eligible for the COBRA subsidy.

Now, if I were a pissy kind of person, I might mention how it would have been nice to know this before I paid for Tuffy's insurance for fall quarter through UW, since it was less expensive than covering her on the unsubsidized COBRA. With the subsidy, COBRA would have been the better way to go. Fortunately, I'm sufficiently ecstatic about finding out that health insurance will cost 60% less than I had expected that I'm willing to let it go.

Takes a good bit of the sting out of getting laid off.

Why Am I Doing This?

After I set up this blog, it took me three years to come up with something I thought would be worth writing about.

I didn't want to collect educational information about MS. It's been done very well, by people who put a lot more effort and energy into it than I ever would.

I didn't want to scare people. Most people with MS are relapsing-remitting. They have to deal with a whole mess of scary stuff, but between relapses don't have significant residual disability. Three years ago I was already secondary progressive, with a somewhat different set of issues. Not everyone with MS will wind up where I am.

I don't have any enlightening insights into life with MS, or a particularly literate way of putting my experience into words, even if I were convinced it was worth putting into words, which I'm not.

Besides, after 20-some years of writing to pay the bills, I'm dogged by the Samuel Johnson quote, "No man but a blockhead ever wrote, except for money." Writing is work, kids, not something one does for fun. I gotta have a reason.

So, OK. I finally retire from my day job. I'm about to do whatever it takes to make the transition from being employed to being retired on disability. From everything I've read, applying for Social Security Disability benefits can be quite the adventure, and approval usually takes a long time. Friends who work for Social Security might be able to explain what's going on. If nothing else, documenting the process will help me keep track of what I did, and when I did it. Maybe by the time my claim is approved, I'll find a different reason to keep doing this.

So I apply for SSDI. Three weeks later, Social Security has approved my claim for benefits. Now, tell me again, why am I doing this? All the reasons I had for not blogging are still valid, and the reason to blog is gone.

Wait...that might be a good enough reason to keep writing, right there. Sheer perversity has always been a powerful motivator for me, and has probably been the force behind most of the pivotal decisions in my life.

Apparently, it still works.

60 years? No foolin'?

My brother called last week to remind me that my mom and dad's 60th wedding anniversary is coming up. I live 1200 miles away, won't be there in person, and couldn't suggest any brilliant ways to mark the occasion.

They have an odd relationship, looking at it from the outside, but I guess a marriage that lasts 60 years must have something going for it. Underneath all the grousing and crabbing, and there is a lot of grousing and crabbing, they really do love each other deeply. They've cared for each other through some really scary health problems over the last couple of years. They're tough, the both of them.

Deciding I totally don't understand my parents' marriage got me started thinking about my own family-type situation, which I also don't understand. Scarecrow and I aren't married. We've been together -- let's see -- it would be 21 years this past January, and our daughter is 19, but I hate to rush into things. I don't know what kind of future Scarecrow might've been anticipating. He's not one to talk about stuff like that. But my increasing disability over the last couple of years makes it clear that, if he's with me, it's going to be way different from anything either of us would have guessed. We won't be doing any of the things we used to enjoy doing -- playing music, dancing, traveling. At least, we won't be doing them together. So, if it's still 'we', what will we be doing?

I've spent plenty of time lately thinking about how I'll be spending my time now that I no longer have a day job. I guess we'll want to think about what retirement will look like for us.

I'll put it on my list.

We have an appointment with the nice folks at Social Security tomorrow afternoon, to apply for SSDI. I can no longer put off looking through the packet of stuff they sent. I'm going to do that. Right now. It'll be fun.

The Last Paycheck

I got my last paycheck today.

Aside from a couple of years as a freelance writer in the mid-80s, I've had a full-time day job since I was an undergraduate in college -- back at the dawn of time, seems like. I always told myself the Protestant work ethic wasn't much of a motivator for me. My job was what I did, not who I was. I liked my work and I was good at it, but it was just a job. It paid the bills. One of my favorite quotes was: "No man but a blockhead ever wrote, except for money." (Samuel Johnson). So, finances aside, leaving gainful employment shouldn't be any big deal.

I half expected to find out, push come to shove, that wasn't true. 

Turns out, I don't miss going to work every morning as much as I thought I would. My last real day on the job was June 19. After burning through eight weeks of accumulated sick leave and vacation time, I'm not (yet) in withdrawal. It's still a relief to realize I won't have to spend the day struggling to do things I never used to have to think about.

I will miss the talented, creative, witty people I worked with, even though it's been years since I saw them in the office every day. I know I won't do a good job of keeping up with them, once I'm no longer in the e-mail or IM loop. I will miss the geeky toys and new technology. And, with my 401(k) barely adequate to finance a long weekend, much less early retirement, I will really miss that paycheck.

I will really miss that paycheck.

In other news, a very cheerful person from the insurance company called to say my short-term disability claim has been approved. At my next doctor's appointment, they want me to get my doctor to estimate when I will be able to return to work. That strikes me funny, even though I realize most of their claims are for people who are likely to get better, not worse. And if I called my neurologist today to make an appointment, it would be six months before I got in to see her.

In the beginning...

I set up this blog three years ago. This is my first post. I hate to rush into things.

There never seemed to be a real reason to start, you know? No major event or decision or transition significant enough to trigger my running off at the pencil, blathering about insignificant details of my insignificant life to all and sundry... until now. This is the story of my retirement from gainful employment, and whatever happens after that. Secondary progressive multiple sclerosis has finally kicked my sorry butt.

They say that if you drop a frog in hot water, it hops right out. But if you put it in cold water and gradually increase the temperature, the frog will stay in the water until it overheats and dies. I think that's what I was doing. I had my first MS symptoms in 1988. Over the next 14 years, I had two brief, minor episodes of optic neuritis. I was a poster child for the disease modifying drugs -- except that I wasn't taking any. In 2002, my hands went numb. In 2004, I started walking with a cane, then using a wheelchair, then a scooter, then a power chair. I gradually lost the use of my hands and arms. I couldn't walk, or stand, or use a pencil or a keyboard, or shuffle papers on my desk. But my symptoms progressed so gradually that there was never a point at which I could say "Yesterday I could work, but today I can't". And my employer bent over backwards to allow me to keep working. I worked from home, used voice recognition software, teleconferenced, whatever it took. It was a totally sedentary job at a network software company, for Chrissake. If I couldn't telecommute, who could? But even making every possible accommodation, I couldn't do it anymore. After a particularly interesting weekend, I finally convinced myself that I could no longer do my job. I'm done. This frog is boiled.

So. What next?

Well. Today I submit my Short Term Disability insurance claim form. Kind of like a warm-up for my SSDI application, and I really can't tell you how much I'm looking forward to doing that.

The adventure begins...