Month: October 2015

 

29 October 2015

So the biggest and most obvious result of my debacle is that my legs don’t work and it is permanent. Oh but there is more. There is so much more.

My body continues to change. Nerves, man, who knew? I’ve no hope of regeneration in the “OMG, I can feel my legs!” sense, but nerves do some wondrous things. I’ve learned a whole new vocabulary in the past 6 months and I even know what some of the words mean, but my real understanding is just starting. Take the peripheral nerves, for instance. All of us have nerves in our bodies connected to muscles and even to each other. In a functioning system, the nerves are also connected to the brain through the spine. My peripheral nerves have had their connection back to the brain cut, but their connection to each other and to muscles continues unabated. So what does this mean? It means the nerves in my legs talk to my leg muscles, but they don’t talk to ‘me’. Those nerves still ‘feel’ external stimulus, and they transmit signals to the muscles, but the transmittal gets cut off before it gets to my brain. The result is that (in a real life example) if my cat, Leon, bites my foot, my foot will move (making him think that I’m playing, so by the time I look down to see why my foot keeps moving, he has wrapped himself around it and is giving my shin a bit of cat judo). I only know my foot is moving because I can feel the bed move, or the move is strong enough to feel it in my abdomen, or as chance has it, I’m looking right at it. (For you animal lovers out there, yes, Leon is still alive and I’m fine. No blood, no foul.) The cool part is that my foot and my leg talked to each other and tried to escape the crazy little cat.

I also occasionally have spasms in my legs that just look (and feel at times) like slow, firm stretches. These moves aren’t in response to a naughty pet or any other external stimulus. It doesn’t hurt, it isn’t usually obvious to anyone else, and it’s good for my circulation, so I don’t do anything about it. Lately, though, these kinds of moves are getting stronger and here’s the thing, my massage therapist thinks they originate in my abdomen, not in my legs. Having felt this and observed this for some time, I have to agree with her. Often, coincident with the stretch, my abdominal muscles get positively rigid. And if that wasn’t odd enough, get this, I can feel my abdominal muscles doing this! I have no outside (skin) sensation from about the bra strap level down, but on the inside I can feel my abdomen flex. This gives me hope for being able to learn to control my core muscles for better posture and for better movement in the chair. So this is the up side.

In other changes, a lot of my hair fell out. This didn’t happen straight away, it only started once I moved to the Auckland unit and it has only recently slowed to normal levels of shedding. I never got bald patches and it wasn’t thin enough to see scalp, but a lot fell out. My estimate is about a third, but because I have so much of it, the loss wasn’t really noticeable to anyone but me (and the nurses who saw the hair in the shower drain – holy crap! was said more than once). I can now wrap a normal hair tie around a pony tail three times instead of two. Also, my nose is cold a lot of the time. This is a new and unwelcome development. Even when it is reasonably warm outside (or next to the heater), even when my hands are warm (unheard of), my nose is annoyingly cold. Another development started in the rehab unit and continues now. From the waist down, mainly at night, I sweat. And I don’t mean that I get a little reddish tinge to my skin or that I glow a little, I mean sweat. Ew. Why? The only explanation is ‘nerve weirdness’ or autonomic neuropathy. I take medication to turn it down a notch, but it still happens. It means I’m having a little trouble with my temperature regulation, so sometimes I’m sweating from the waist down and shivering from the waist up. Of all the wonderful things Steve does for me, top of the list at the moment is sleeping in a room so warm it would stupify a tropical lizard just so I can be comfortable. Night after night.

I can’t say I’m looking forward to more changes. It seems like most of the changes have turned out to be irritations. If it’s all nerves, why can’t I wake one morning to find that I have exceptional hearing or that I can see perfectly with no reading glasses? None of these developments make me feel angry or sad, mostly I’m just mystified and curious. The body is a pretty special piece of equipment and my curiosity about it helps me cope.

 

21 October 2015

From my newly acquired height, I am much closer to eye level with a lot of people and objects that I might not have paid much attention to before. One group of these freshly perceived people is children and the other is homeless people sitting on the pavement – these two groups have a growing place in my heart and in my mind. Don’t get me wrong, I’m not feeling ‘clucky’ and I’m not likely to share a flagon with a stranger, but I’m noticing two interesting things.

One is that street people who are sitting on the pavement make eye contact, usually smile at me and even occasionally give me the thumbs up. I never had this response from a street person before, not if I hadn’t already done or said something to get their attention. The first thing I thought was “shit, do I look homeless? I know my hair’s a bit messy but jeez.” But it keeps happening, so I respond in kind. A bit of hey how’s it going. I smile, and do the quick tilt back of my head in that ‘what’s up’ kind of way. People walking beside me don’t even notice the exchange. I had been living in a 5’6″ world and I’m suddenly in the 3’6″ world and there are completely different inhabitants. I mentioned it to Steve (way up there in his 6′ world) – what is going on? And in his insightful way, he suggested that perhaps it is shared suffering. An acknowledgment that not everyone gets a comfortable ride in this life and we of the 3’6″ world know this better than anyone. Plausible and certainly a good enough answer for now.

The second notable is that children have no shame in checking me out (I’m talking about children under the age of about 7 who aren’t yet worldly enough to have had a wheelchair and its contents explained to them). They look at me, into my face, then they look at the wheels and how they work. Then they look at me again. I think what I like most about this little non-verbal exchange is that I can imagine what they imagine encountering this for maybe the first time. There is no trace of pity nor is there shock or surprise. It’s very matter of fact – hey there’s a lady who has chosen to get around in a chair instead of standing and walking. I like the idea that they are grappling with the nature of it – is it voluntary or involuntary? Is the chair kind of like a bicycle that she can get off of whenever she wants to? If it’s involuntary … how does that work? Aren’t adults all seeing and all fixing? Why not this one?

A couple of weeks ago, I wondered what I would do if a child asked me about this situation – what would I say? – and if I were the child’s parent, what would I want them to hear? It is tempting to have a bit of fun with it – Santa took my real legs because I was bad? I was run over by 12 clowns in a tiny car? But the truth is gruesome enough. Now, twice this week, I’ve had children ask. One asked why I was in a trolley. When I got past the image of a drunk backpacker being wheeled back to a dorm in a shopping cart, I replied that my legs don’t work. He was on his way somewhere with his dad, so he just considered that as he walked away. The second was a young girl who asked why I was staying in this chair. Again, I replied that my legs don’t work but this one had time on her hands. Why not? I told her that I’d had a bad accident (left out the bicycle part and just let her imagine the rest) and that seemed like enough.

So I ask those of you with children or those of you who have had to explain something a little too real to a child – what would you want them to know? if you were their parents, what would you want them to hear from a stranger? What would you not want them to hear? I know the answer is probably “depends on the child”, but I want more than that from you. I don’t want to scare them off riding a bicycle, but I don’t think a lie is fair to them. They have the courage to ask, so I want the courage to give a good response.

 

19 October 2015

 

I’ve had a few re-starts in my life. I’ve moved to new towns without knowing a soul. I’ve even moved to new countries without knowing a soul. I’ve started new jobs, new careers, new professions. Always, it has been my choice. In every instance, I ran toward something new, never away from anything. But this time it’s different. Time and chance happened and I am at times heartsick with loss, at times angry with the lack of control, at times embracing the challenge. On my best days, a wheelchair is inconvenient with a couple of wheelies thrown in. On my worst days, I’m a shattered and embarrassed mess and the only words that will come from my mouth are “I don’t want this”.  I liked Claudia 1.0. I liked the way things were going. Claudia 1.0 had plans and she was happy.

So much of me is the same and so much of me is different. In my head, in my being, I am the same – I have the same intelligence and the same fundamental beliefs. I have the same sense of humour and the same desires. But a good portion of my body is irreparably changed and those changes colour my perceptions of the world and the world’s perceptions of me. Those changes demand accommodation in ways I never needed to worry about. Those changes could most certainly take over my life and redefine me if only I would let them. Fortunately for Claudia 1.0, there is enough of her left to demand to be the one defining things around here. If there is even the smallest chance that I can overcome a challenge, it hurts me more to quit than it does to continue. And so I continue. And I continue. And I continue.

It is hard to describe how much of this is me me me and how much of it is support from the people I love. I think I have reached the point, certainly with my partner, that I am the candle and he is the flame; or maybe it is the other way around. It is hard to know where I stop and he starts; all I can see is light. He has kept me tethered to this earth and on those messy awful days he looks at me and says “every time something like this happens, it makes us stronger”. He really does say that. How could I contemplate anything but continuing? He is the closest to me, but he is not the only supporter. Every day I cannot believe my luck? good fortune? blessed life? for the family and friends who have turned out to give me love. They surround me with warmth and comfort and all I can hope is that I’m worthy.

It’s been 6 months since an accident changed my life and the lives of everyone near me. I’ve had a bit of time to think about the changes and about the ups and downs, and I’ve come to the conclusion that, if I could wish for anything in the world, I would wish for a full recovery. What I wouldn’t wish for is that it had never happened. The permanence stinks, no doubt about it, but all that I have gained from the aftermath has changed my life for the better. I think most people wish for a partner who would stick out the rough patches, and I was pretty sure Steve was one of those people. Now I know beyond doubt that he is one of those people – not everyone gets to have that. I know who my friends are and just how important they are in my life. I also know a bit more about what I’m made of.

Slowly, the worst days are getting rarer and further apart and the best days are taking their place.