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.
Friday, February 27, 2015
Wednesday, February 25, 2015
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.
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.
Tuesday, February 24, 2015
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.
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.
Saturday, March 5, 2011
Anticipation
It's Saturday morning and I'm waiting for the call that it's time to pick him up. As much as I want him home again, I'm scared that this is when it's really going to hit me. As much as I love my husband, the idea of the stump worries me. In my mind it is not fully part of him, but some strange other. Where I wouldn't think twice about his leg moving, as ugly as it was, the idea of the stump moving freaks me out. I know it will move - it has to or he wouldn't be able to walk, but I'm afraid of it still. So for me, this homecoming is a mixture of great anticipation and some fear.
I know there will be care involved, but how much I'll have to do is still unclear to me. Will he need me to change bandages? Will that be done when home health comes on Monday? How will I ever get my house ready for home health to come on Monday?
Friday, March 4, 2011
Farewell to the leg
After many years of surgeries and pain, my husband's leg was amputated on Tuesday. He was ready for it; I'm not so sure I was, even though I brought the idea up to him after reading an article in Runner's World about an amputee. The leg he had was keeping him from doing things he wanted to do. The prosthetics they make now are so good that he will probably be able to do much more with one of them than with his real leg. So, after 32 years of trying to keep his mangled leg, he decided to get rid of it.
For him, the VA offered counseling. They made sure that he had time to back out of the surgery. They talked to him about what would be involved, what kind of leg he could expect, what he would be able to do. He met others who had been amputated and talked to them about what it was like.
For me, I searched the internet, trying to find out what it was like for the spouse of an amputee. All I could find were articles about how to help him through it. How to be supportive, how to talk to him when he's down, how able-bodied he'd be. Nothing at all about what it's like to live with someone who no longer has a leg. Nothing about what the rest of the family will experience. Nothing at all about what it's like to lie in bed next to a man with a stump. So, I thought I would write about it myself.
On Tuesday, we got to the VA at 6 am. He was taken back soon after, and at about 7:45, I was allowed to go back to see him and gather his belongings. Then I was led to the waiting room, where I waited, and waited, and waited. At 12:00 I called the recovery room and was told he'd be out of surgery soon. I went down the hall to the bathroom, not knowing that the surgeon had just finished and was coming to talk to me. Nobody in the waiting room, the people I'd spent all morning with, told him I'd be right back. Nor did they tell me that he'd been there.
Every hour, I called the recovery room. They kept telling me they were working on pain control, but they'd let me know as soon as I could see him. About 3:00, I kind of lost it. Everyone else had been able to go back to see their loved ones, but not me. Everyone else had had someone talk to them, but not me. I got upset that I hadn't even seen one of the doctors, that I didn't know what was going on, and that I couldn't get much information at all. They promised to have the doctor come talk to me as soon as he could.
At about 3:30, the doctor did come talk to me. He told me everything had gone well, except he was having trouble with pain. The amputation was exactly where they expected, which was really good news, since if it had to be any higher, it would have made any functional use of the leg nearly impossible. I felt kind of bad about how upset I'd been when I found out that he had tried to talk to me earlier.
When I finally got up to the room to see him, it was 5:00. I'd been sitting around the hospital for 11 hours. Hubby was amazingly happy, though. Every other surgery I've seen him for, he was groggy and grumpy. This time, he was wide awake and happy. He wanted to show me the leg immediately. I wanted to ignore the emptiness beneath the sheet as long as possible. He got me to look, though, and it wasn't so bad. The stump was wrapped with Ace bandages, so I could still pretend it was in disguise somehow.
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