September 10, 2013

out on a limb

catherine @ 9:09 pm

About a month ago, I had my left leg amputated below the knee. How this came about is a long and rather sad story and I do not really feel like getting into the whole thing because some of it is just too personal or complicated and I suspect a fair amount of it is not really all that interesting. My friends already know enough about it, having followed along with me for the last 18 months or so, whether IRL or online (I have dared to indulge in a rant or two on “the Facebook” to friends). And family and close friends, most notably my BFF Alain, have been there with me through a lot of it.

But I think this is a major life event and not something that would go unnoticed. Indeed, judging by the stricken looks of most people I cross on the sidewalk or at the little shopping mall up the street from the rehab centre when I venture out for a stroll, I guess it is quite a sight to see this seemingly youngish woman, zipping about in a motorized wheelchair, sporting a tibial prosthesis on her right leg and a freshly bandaged tibial amputation on her left leg, not to mention a great new hairstyle. So I just felt I should say a little something about the experience.

Well, first of all, amputation is extremely painful. I had had my right leg amputated when I was sixteen years old and I remember it being painful but I guess I did not remember it enough because fuck!, the first two weeks after surgery this time around, there were moments when I thought I was going to be completely swallowed up by the excruciating pain that throbbed and stabbed at my leg for hours and hours and that the morphine hardly made bearable for some of the time. None of this was helped by the fact that I am allergic or severely intolerant to most painkillers and that morphine was about the only (though probably not the most effective) thing they could give me.

My last blog post was simply a reposting of Emily Dickinson’s poem about pain because it just perfectly summed up how I felt. I had discovered Dickinson’s poem when I had had my second hip surgery in 2006, naively thinking that I could never top breaking my hip, pain-wise. I was totally wrong. Oh, I am sure there are worst things than amputation, even in my own past, but I hope I never have to find out or remember because to be honest, I cannot imagine anything worse than how I felt those first couple of weeks.

Also, our health care system in Québec really sucks. I know I am saying nothing new but I do not think most people are aware of how bad it is. I could say a lot about this, and I could add something about how the system totally fails people with disabilities in particular, but unfortunately, it would take too long. Of course, I fully intend to file formal complaints regarding a number of incidents that occurred since all of this started in April 2012, including the amputation itself which, like everything else that happened to me, could have been avoided, if only people had done their jobs properly, and did not go according to plan, because people did not do their jobs properly.

But there is something or some things seriously wrong with our health care system and we should most certainly be alarmed. Some people think technology or hackothons or privatization or shiny new mega-hospitals or the start-up model will fix health care. But unfortunately, to a certain extent, I think we have reached a point of no return. Because a lot of the stuff I had to go through in the last year and a half is really inexcusable and, beyond technology or new management models or more money, etc., the biggest problem, as I see it and experience it, is that most people just do not really care enough. And I realise my complaints will most likely not change anything and that I will probably gain nothing more than a lot of aggravation and heartache. But on principle, I will do it anyway. I will say the hard stuff, I will suffer for it, I will be that girl.

Even the rehab institute where I am presently hospitalized for my physiotherapy and where I am learning to function as a double-amputee, the Institut de réadaptation Gingras-Lindsay de Montréal (IRGLM), has seen much better days. I have been a patient on and off here for the last 30 years. I got my first prosthetic limb here. The best prosthetist in the province, perhaps the country, works here and I have the immense chance of having her do my legs. I have every confidence that she will again work miracles despite what she has to work with.

But despite a staff that for the most part gives its best, this place has lost a lot of its luster. The centre looks tired, a bit battered and dirty even. Indeed, most hospitals I have frequented in the last 10 years or so have been increasingly filthy and unfortunately, the IRGLM is no exception. I am not saying those tasked with maintenance are not doing their job. But I am saying budget cuts have certainly made their job much harder to keep up with. This is inexcusable in the age of increasing proximity and super resistant bacteria. I am considered a “germaphobe” here, excessively prudent with regards to everything I come into contact with, and to be honest, I wear that label proudly.

Finally, a few words about my new physicality, about being a double-amputee. I am sure I will have more to say about it as time goes on but at the moment, I do not really know what to make of it. I mean, so far it has been mostly about pain and that has made it difficult to really experience much else. Of course, there is a small feeling of helplessness but I think that has more to do with the fact that I am not healed yet. I only had my stitches removed last week and I need to be extra-careful to not damage anything. I am sure once I can put more weight on my leg, I will be much more independent.

And to be honest here, even though I am often very annoyed and frustrated by how less able I am for the moment, I am already extremely limber and autonomous, hardly requiring any help, to the point where, aside from my physiotherapists and my prosthetist, most of the professionals assigned to my case have little work to do with me. I am old pro at this and I already know what my objectives are and how to go about attaining them. And I am making progress fast. This week, hardly a month after my surgery, I have already started walking with a pneumatic post-op prosthesis and next week, I will start walking with my first (temporary) prosthesis. For the most part, the things holding me back the most are the pain and the fact that my incision is not completely healed yet. And still, I have worked through that and if all goes well, I should be home in three weeks, just in time for my birthday.

But I have noticed small things, like old habits I need to revise because they do not apply anymore. For example, I noticed that when getting dressed, like putting pants on, I would make the movement as if I still had my leg so it would be exaggerated, I did not need to lift my leg as high. But I am pretty much over that now, my brain has already started adjusting. I am sure other things like that will crop up in the next few weeks or months, especially after I start walking with a prosthesis.

Which brings me to the hard part of this post. This amputation was a long time coming and if I want to be honest with myself, the writing was on the wall years ago; it is actually incredible that I did not lose it sooner. But as I alluded to earlier, the surgery was not as successful as it could have been. I am not really ready to talk about that right now but suffice it to say that I may have to have a second surgery to correct the first one and we will not know if that is necessary or not until I start putting real weight on my leg, until I start walking with a real prosthesis.

Needless to say the prospect of another surgery scares the shit out of me. This was a very difficult experience and I had accepted this fate in the optic of this leading to better health and a better quality of life, not to mention being free of doctors and hospitals and clinics, etc. In my mind it was get the surgery, get the rehab, get the leg and get the fuck out of Dodge. In my mind, three months at the most and bang, I was done (for the most part) and I could get back to my life, or what was left of it, and start the process of getting things back in order. So, while I was totally aware of the risks, I was not expecting the possibility of a second surgery. If that turns out to be the case, my time-table will definitely need to be revised.

In the meantime, I am doing my best to stay positive and to get healthy and I am actually doing a pretty good job. I am fully participating in my rehab, doing the physiotherapy, consenting to all the evaluations, even the [IMHO] needless ones lest I be perceived as uncooperative. I am taking the boatload of vitamins they are recommending, drinking the liquid nutritional supplements and trying to keep the weight on, regardless of how bad the food is (and believe me, this is the worst institutional food I have ever had the misfortune of eating). I am being nice and polite and sociable and helpful, even when I just want to be alone (which is practically impossible in a place like this). I am not complaining about my room mate’s tremendous snoring (he is a great guy regardless). I am being patient and tolerant with all the bureaucracy and “phoning-it-in-ism” I witness everyday and just trying to keep my head down and get things done. I am, like many times in the last year and a half, doing everything I can to make this work. Hopefully, this time it will.

« pain  

5 Comments »

  1. I know that a virtual hug really doesn’t count for much, but right now it is all I can send you. I continue to keep you in my thoughts, and we really should get on the phone again soon.

    Keep fighting Girl, that’s the Catherine I know!

    Comment by Johnny — September 10, 2013 @ 9:45 pm

  2. I’m sorry that you’re having to deal with all of that pain, and everyone’s (my included) often messed up priorities. But I’m also excited for you to be more mobile than you’ve been in recent months and years! I just really share your hope that your recovery is good and quick.

    Thanks for letting me know how you’re doing. I’ll email you about swinging by with some non-institutional food.

    Comment by Michael — September 10, 2013 @ 9:55 pm

  3. Reading the text I can hear the subtext of the emotional struggle not just with the pain, but with the rage against the system that’s driven you into this corner and the people who botched the surgery. The health care system has become a production line designed restore bodies to “normal” and if one’s body doesn’t fit that “normal” standard, the machine is as likely to mangle you as to help you.

    I know the feeling of being trapped in the system and having to hold it together despite immense emotional stress from inside and constant provocation from outside in order to get yourself out and free. You’re having to run on all five burners when you only have enough gas for two.

    At those moments I felt like I was the tip of a poker in the fire, and that talking to my friends and family could at least dissipate some of the heat I was taking. It helped knowing that I had people on the outside pulling for me.

    One thing to cherish about having friends with disabilities is that you don’t have to be taking care of their fears and pity. Whether we’ve had the exact same experience, we know parts of it, and the struggles that go with it. There are no apologies to make and we don’t need to be protected from the truth because we already know it in one form or another.

    Pulling for you and patient with the process. Be well -AH

    Comment by tigrlily61 — September 11, 2013 @ 8:52 am

  4. Thanks you guys for your warm wishes. I really appreciate it.

    Johnny, virtual hugs are almost just as nice as real ones so thank you. And yes, give me a call anytime.

    Michael, cannot wait to see you. And the food sounds great ;-)

    Tigerlily, thank you so much for a great comment. And yes, you are right, it is nice to have people who understand. Looking forward to meeting up with you again soon. Sorry I have not been able to participate in recent activities but hopefully, sometime in October or November, I will be able to contribute.

    Comment by catherine — September 14, 2013 @ 2:33 pm

  5. Merci pour ces nouvelles et de nous faire découvrir les sombres cotes de notre système de santé.
    À bientôt! Et bonne chance,
    Laurence

    Comment by Laurence — September 15, 2013 @ 9:45 am

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