The Blog is Moving!

I've moved this blog over with my other one a thttp://www.floridabehindthescenes.com/  Come visit me!

Slow and Steady

Well, slow, yes, steady not so much.

My house is a maze of not-quite-finished projects that were interrupted by various surgeries over the years.  They all bother me, but chief among the unfinished projects is the kitchen, which was done years ago except for the backsplash and cabinet filler strips.  The backsplash is something I could do myself, mostly, but the cabinets were not quite square.

So, I pushed my husband into rehanging them correctly.  Not just because they drive me crazy, but also because I know that he is always happier when he is working on something.  Unfortunately, this project is going very, very slowly.  He has taken down 3 and rehung 2 over the space of about a week.

I am trying hard to walk the line between patience and pushing him to do something I know will make him happier.   Part of the problem is that I know he does have real pain, but I also know that he has a tendency to use his pain to avoid doing things that are hard.  It would be easy for me to assume that all his complaints are malingering, and it would be possible that I would be right.  However, it would also be very likely that I would be wrong.

These delays are more than just annoying, though, the cabinets being down have made it difficult to cook, difficult to wash dishes, difficult to feed the dogs even, depending on where the cabinets are.  That means we are eating out, which isn't great for health or wallets.  I'm also really concerned with the damage that could be done while they are out.  We have three dogs that can be rambunctious and knock things over.  There is also water in the kitchen, splashed while doing dishes, splashed from the dogs bowl, or just spilled.

Someday, the cabinets will be rehung, and then I can get to work on that backsplash!

Birthday

We celebrated Doc's birthday tonight, even though it's actually tomorrow.  He asked us not to get him any presents, but my daughter bought him a new TV to replace the old one in our room.  If you read my post on TVs, you know how I feel about that, but I'm glad she did it.  The one he has now is pretty awful; it's an older one, from just before flat screens popped up everywhere.  The DVD player doesn't work in it, so he uses his computer to watch movies, and there's no way to connect Netflix or Hulu or anything like that.  It will be his most used birthday present ever, I'm sure.

We used to always go out for a huge dinner on birthdays, and I would try to make a beautiful cake, and we'd get home and nobody would want to eat the cake because they were stuffed from dinner.  For a little while, we tried to do birthday lunches instead, but now that some of the kids are working during the day, that doesn't work well.  Tonight we ordered Chinese and since his birthday is on Pi Day, I made a peanut butter ice cream pie, and bought the Key lime pie that was on sale at Publix, just because I love it.

Since tomorrow is his actual birthday, and most of the kids will be gone, that will be our time together to do something a little more romantic.

Wisdom?

It's a funny thing, when I started this blog, I expected to learn so much about how to be a good wife to an amputee that I would have all kinds of wisdom to share with my readers.  It turns out, I don't feel much wiser at all.  And I'm not sure that I'm a good wife most of the time.  Still, I do have some things to share with you that apply mostly to leg amputees.

1)  Try to keep the dogs out of the way when your spouse is on crutches.  Dogs have a tendency to freak out over crutches, even after living with them for years, and some dogs will act like squirrels in front of a car, running back and forth.  This increases the likelihood of your spouse tripping over them and hurting something else.

2)  It's nice to open doors for people on crutches, but once you've done the opening, the crutches make great door stops.

3)  Carrying hot coffee is nearly impossible on crutches, so you probably don't want to ask your spouse to pick you up a cup of Starbucks unless they are wearing their leg.

4)  Walking with the leg on is hard work.  It requires a lot more effort than walking on a real leg, even if that leg is mangled.

5)  At the grocery store, let your spouse push the cart if they are wearing their leg.  It acts as a walker, helping with balance and preventing them from falling.

6)  The leg will ALWAYS be doing something weird, like falling off when they stand from sitting, twisting around a bit when they are walking, slipping into an uncomfortable position, etc.

7)  Your spouse has no feeling in the prosthesis.  This means that they can step on your toes and stand on them without ever realizing it.  Try to tell them nicely to get off your toes rather than instinctively pushing them off.

So there you have it, the sum total of my wisdom of being married to an amputee.  If you have anything to add, please let me know.  I really need to get a little wiser!

The TV

I have never been much of a TV watcher.  People sometimes view this as a sign of cultural snobbery, but I just have never liked to watch it much.  There is something about the electronic voices that don't work with my ears, and I have never been great at sitting still.  When I do watch, it is likely to be either as a social activity, i.e., the whole family is watching something, or an experience in train wrecks.  Stuff that just seems too awful to believe will catch my eye and I will end up watching Keeping Up With The Kardashians, or something like that.  For years I would try to not even own a TV, but people kept giving them to me because they couldn't believe I didn't want one.

Doc loves TV.  He keeps it on all the time.  He reads while it is on, or plays on the computer, or knits, or just sits and watches it.  A few years ago, in time for the Superbowl, I went and bought a nice, fairly large TV for the living room.  I bought him a recliner that he said was comfortable, even though I hate it and it looks awful in our living room.  Everything is all set up for him to enjoy.

He never uses the TV.  He never sits in the chair.  Instead, he sits in bed and watches the TV in the bedroom.  I HATE having a TV in the bedroom at all, but I relented because it meant so much to him and because there have been times when he couldn't get out of bed for extended periods of time.  I thought he needed the entertainment and distraction from pain.

I wish I hadn't.  I wish I had stuck to my guns and never let the thing in my room.  Not only does he keep it on way too late, making it impossible for me to sleep, but he also never leaves the room.  He is no longer part of the family in any real way, except as the bill payer.  That is not what I ever wanted.  When we first married, we would play games together, cook together, and take care of the kids together.  He used to make their lunches, pick them up after school, do work around the house.  Now he sits and watches TV.  He never knows where the kids are, where the groceries are, or how to find the pot or pan he would need if he were going to cook.  He does always know where the remote is.

Of course many things are harder for him than they used to be.  That is part of the reason he doesn't do as much, but I think the TV really keeps him from participating in life.  It is too easy to turn it on, stay in bed, and watch someone else's life flash by.

The Stump

Four years ago, apparently what loomed large in my mind was the stump, what it would look like, what it would be like, and how I would deal with it.  Part of all marriages is physical attraction, and for most people, stumps are just not attractive.

I should probably mention that his leg was ugly to begin with.  The accident that ruined it happened long before I knew him, so I have always known him as a man with an ugly leg.  That never kept me from loving him, and I knew that the stump would not, either.  But still, my reaction to it worried me.  Would I gasp when I saw it and hurt his feelings?

In the early days, I did all I could to avoid it, to avoid seeing it or even thinking about it.  I had to help with bandage changes, and as long as I focused on the wound and not the limb, I could handle it. It made me laugh that after all my years of avoiding the medical field, I had become someone's personal nurse.  It has never been the gore that bothered me about medicine, it is the caring, and since I already did care, I could handle the duties.

It took me a while to actually look at the stump without focusing just on wound care.  When I did, my worst fears were confirmed.  It was ugly.  To me, it looked like a ham attached to my husband, but a ham that could move.  The way it moves offends my sensibilities, as if it is something from a horror movie.  The other end of Thing, perhaps.

At the same time, looking at it confirmed that I could handle it.  As ugly as it is, I have never looked at him and been horrified that he no longer has a leg.  He is still Doc, still my husband.

Endings

For the last year and a half, I have worked with a wonderful group of people as a Realtor.  I love the company.  I love showing houses.  Unfortunately, I am not as good at selling them as I am showing them, so I have made very little money at this endeavor.  After much discussion, with another fee quickly coming due, I decided it was time for me to quit.

Tonight I signed the papers to make it official.  Rather than the flood of relief I expected, I feel deeply sad.  This company is one of the best I have ever worked at, filled with people who help each other and who truly enjoy what they do.  That's a hard thing to find in a workplace, and apparently especially rare in Real Estate.

Now I am onto other things.  My husband worries that we will not have enough money for me not to work in a paying job, but I haven't been paid in months.  It is time for me to focus on the creative things I love to do, and hope to make a career of them.  That's a luxury I have waited a long time for, but jumping in terrifies me.  This isn't a job with a clear-cut description.  I have to figure out myself how much time to spend writing, photographing, attempting to paint, and trying to get my work seen.  It's going to be tough to balance it all.

I wish I could say my husband was completely on board with this.  He isn't.  On the one hand, he says very supportive things about my talent, and agrees that this is a logical step, but on the other hand, he tells me of the financial ruin that is about to befall us. There is a fear nagging him that he will find himself in poverty, and I don't know how to calm those fears.  I have registered with a temp agency, that I hope will find me a little work here and there while I'm working on my not-yet-paying projects.  Maybe that will help him feel more secure.  It could also pay for printing and framing my photos.

Of course, my biggest hope is that my work will begin to pay off quickly and I won't have time for temp agencies and financial worries anymore.

Anniversary

It was four years ago yesterday that my husband went in for surgery to have his leg removed.  There was nothing easy about the decision, but then, there had been nothing easy about keeping the leg that had been mangled in a motorcycle accident more than 30 years earlier.  The timing was horrible for me; I was in my last semester of getting my Masters in Architecture at the University of Florida, a grueling program that required long hours and complete dedication.  However, I could hardly ask my husband to wait after all the pain he had been in since the last failed knee surgery.

We went into it knowing that I would likely have to put off my graduation for another semester.  I informed my advisers that I might have a difficult time finishing on time, which was one of the hardest things I have ever done.  My whole life, I have been proud of always doing everything on time, or even early.  I hate the idea of being late, or spending more time finishing something than I have to.  However, I had experience with working on my degree during previous surgeries, and I knew that this would be the hardest one yet.

My husband went through counseling to ensure that he would be ready to take this step.  There have been a lot of negative news stories about the VA lately, but there are things they are very good at, and they have a lot of experience with losing limbs.  It is entirely possible that he did not listen as well as he could have to the counseling, but he was ready for this.  If only there had been some counseling for the rest of his family.  Perhaps I should have sought some out for me and the kids, but I really had very little time to even think about it.

The surgery itself went fairly smoothly.  The initial recovery went smoothly, although as I thought, it was impossible for me to keep up with my thesis work, and I did put off my graduation.

Now, four years later, it seems like we have littered those years with broken dreams.  I have a degree, but still no job as an architect; he has made little progress in his desire to run a marathon.

Still, I think we are better off for it all.  Those dreams may never come true, but we are infinitely adaptable in our dreams.  The dream that has come true is that he is able to go about his day in less pain.  His shoulders don't ache all the time, his back is not as constantly in spasm, and he has no more pain in that knee at all.

Finding Balance

My husband is eager to find a way to ride a bike again, not only for himself, but for me.  Years ago, I would run while he rode alongside me.  At the time, I was touched, but slightly annoyed because I used to think of running as my time alone, without anyone talking to me.  It was rare for me to have time like that with five kids and a husband in the house.

What started as him riding while I ran soon turned into him walking while I ran, and him walking a 5K with me, then finally, both of us doing a 1/2 marathon.  He still had his leg at the time, although it was a mangled mess encased in a full brace.  He could walk around the house without crutches, but for longer walks, he used crutches to prevent damage to his leg and to help with balance.  We enjoyed our time together, and I was so proud of his determination.

Since his amputation, balance has become much more difficult.  There are things you simply cannot do with a prosthesis, or at least with his prosthesis.  These include swimming and biking, both things he previously enjoyed.  He can manage to paddle around with one leg, although he can't swim like he used to.  Riding a bike eludes him, though.

With only one leg, he has to push with the one foot, and wait for the pedal to return, or use a cage and push down, then pull up with that foot.  The problem with using a cage when you only have one foot is that if anything throws you, it's harder to get that foot to the ground.  Beyond that, biking is a matter of balance.  If you only have one leg, one side is heavier than the other and throws everything off.

Solutions to this problem tend to be cumbersome and expensive.  There are tricycles, but those are difficult to transport if you want to ride somewhere other than at home, and few of them have gears.  There are recumbent trikes that are more portable and comfortable, but cost in the thousands.  Hand bikes are even more expensive.  Of course there are organizations that help defray the cost of bikes for handicapped athletes, but they rightfully want some indication that you will use the bike fairly seriously.  My husband may use a bike for more than just riding around, but then again, he may not.  It's hard to know until you have one to try out for a while.

Balancing the cost with the benefits are where we are right now on the bike issue.  It seems ridiculous to spend thousands of dollars on something that might get used a few times a year, but if he had the bike, he might well use it much more than that.  I would love to have him ride around the block with me while I run, because I have come to hate going out to run alone.

Changes for the Better

I just found out that there is a book with the same title as my blog, and I feel a little upset by this.  The book was published in 2013, after my first posts here, so I feel rather proprietary about my name, although I certainly can't claim enough of a readership to say it was stolen.

It may seem from my post yesterday that amputation was a bad choice for my husband.  The truth is, nothing could be further from the truth in many ways.  Before the amputation, his pain was so bad that he was living on pain pills, not just for his mangled leg, but also for his back which was broken when he was in the service.  He still experiences quite a bit of pain on a daily basis, but he has been able to successfully decrease the medication by at least 50%.  That's huge.

The reduced pain has had huge impacts on our lives.  He no longer has tantrums over everything that doesn't go his way.  He was often quick to blow his fuse before, and doesn't as often now.  In many ways, it's a huge relief to have him feeling so much better.

At the same time, it seems that some of his depression is tied to his lowered pain.  That sounds very odd, but the truth is, for many years he has carved out a niche for himself of being a heroic man in pain, and suddenly, the pain is less heroic.  My drama king doesn't know what to do with himself now that his starring role has changed.  These days when he complains of pain, I may well blow him off, because I know that his complaints are often more psychological than physical.

It may sound selfish, but knowing that makes things easier on me.  I don't have to rush in and try to sooth him when he complains.  I don't have the constant worry of his pain hanging over my head while I am trying to work.  I don't have to worry that he will overdose himself in an effort to relieve pain.  When he complains, it is a luxury for me to not worry.

The amputation wasn't the answer it was meant to be in many ways, but it has in the end improved our lives.

Almost Four Years Later

If anyone had told me that my life would still be this unsettled four years later, I am not sure I would have believed them.  It turns out that post-amputation life is never the same.  There are some things I may have been able to anticipate, and others that took me completely by surprise.
The first months actually went much more smoothly than I expected.  Not that they were easy, but he learned to walk with the prosthesis relatively quickly, and was proud of himself for that.  Learning to use it turned out to be the easy part.

I thought that once a prosthesis was fitted, that was it and wearing it was just a matter of getting up in the morning and putting it on.  There are people who wear their prostheses all the time.  It turns out that it isn't that simple.  Tissues swell and shrink; weight is lost and gained; a perfectly fitting prosthesis one day may not fit the next.  The bucket may crack, the battery may not charge correctly, and it may just be too hot to imagine wearing 7 lbs of metal and plastic on the end of your sweaty stump.  It seems that we spent more time getting the leg trimmed and reshaped and refitted than he spent wearing it.

As the months wore on and he was still unable to do much more than walk around the block or through the grocery store, he became depressed.  He tried to do less and less.  Every time he looked at the things he hadn't finished, instead of becoming energized to do more, he became dejected and did less.

Always one for big plans, he kept talking the big talk.  He was going to do a marathon.  He was going to do the Boston.  He was going to learn to swim with one leg and go diving again.  He was going to ride a bike.  In reality, he became more and more confined to his bed.  I became more and more frustrated.

It is possible that I said things I should not have said.  That I have yelled more than anyone should.  I have tried wheedling, cajoling, bribing him to do something.  I spent too much time sitting next to him in bed, getting depressed myself.

It would be nice if I could tell you some story of a huge turnaround, but the fact is, I can't.  I have started doing more things I enjoy, finding alternatives to the architecture career that hasn't materialized, and forcing myself to do things outside the house a little more.  In response, he is trying a little harder.  The depression has lifted a little bit, but it is still lurking.