Much more than this...
I was reading a book recently that talked about the “micro-losses” that we experience as we age. It starts with giving up our infancy to become children and students — how often have we been told “You can’t do that any more, you’re a big girl now!” (Or, more accurately, how often have we said that to a child?). Then moving from school to university to work — we lose small things. We gain others in exchange — because we are students, we go out and make friends, learn new things, compete, etc. At work, we develop skills, we deepen friendships, we contribute to the development of our company and society. We marry, we gain family... we have a period where we get more of what makes us human.
We also develop the idea that independence is critical. We want to remain independent, to be “not a burden”, to be self-reliant. And this is a comforting lie that we tell ourselves. When we’re born, we are dependent on others for everything, and often, at the other end of our lives, we are again dependent on everyone else. In between, we create our bubble of self-sufficiency. During this time, too, we gradually lose things, but often so slowly that we don’t notice until after it’s done. Like gradually changing from being the hard-drinking party freak to being the one who’s asleep by 9:30, it’s a progression that we accept.
I’m finding that I’m losing a lot, more quickly than I’m comfortable with, and more than I can accept. I’m not having an easy time with the adjustment caused by this disease.
To start, I’ve lost trust in my body, because it betrays me over and over. I’ve lived through the surgeries, scans, radiation, chemotherapy, drugs, pain killers that come with this. My body will signal that I can do something that I enjoy, then lash me with pain, suck away my energy and leave me gasping for air at the simplest things. I’ve adapted over the past 5 years to know that I can do “one big thing” a day, and to spend my effort carefully. So what used to be a full day of wandering through the Market, admiring the stalls, shopping and stopping for a drink is now an hour of more targeted activity. Where I could go to two or three stores in a day to complete my shopping, I must do that over a week or more. I frequently have to cancel plans at the last minute, because I’m exhausted or in pain, and I’ve learned that pushing through to complete something means that I have to spend 2 - 3 days recovering; and missing even more fun!
I travel as a wheelchair passenger, and I miss being able to wander freely in the airport. I’m at the mercy of the person pushing the chair, and I also don’t want to be the difficult passenger. I’m learning to ask that they let me stop to buy drinks / sandwiches so that I’m not parched and starved after a flight, but the days of wandering through airport shopping are mostly gone. I have to use a mobility aid, which makes me feel old, weak and clumsy. I have flashes of anger when people are discourteous— like seeing me approach with a cane in one hand and bags of groceries in the other, and they allow a door to slam shut in my face. Or when they continue walking 2 or more across, forcing me into the road to pass. I’ve fallen in stores, and people have walked past or over me, while I lay on the ground. They have had their reward. Stairs are now a massive challenge, so it limits which friends I visit. Although I’ve got pretty good at finding the nearest elevator or escalator, and I avoid places that aren’t accessible.
I avoid crowds, because there are many, many people who think nothing of sharing their illnesses, and who cough and sneeze openly, wipe their noses with their hands then touch you. So I miss a number of things because I have to be extra careful not to end up in emergency (a location full of sick people!) I think that my immune system is stronger because I have my little dog sleeping with me, but even so... After my treatments, I’m contaminated and have to avoid contact with others for a few days. I can’t hug anyone. I have to stay away from my puppy, who is confused by my pushing him away. In fairness, friends are more aware of my limitations and are often more sensitive, but it also means that any planned gathering may not happen because someone is “coming down with something” (or because my body has betrayed me again and I have to back out.)
I’ve also lost my career, and that is very difficult to accept. I was losing that for a while, as my illness meant that I couldn’t work at my usual levels for a few years, and every time that I got to a stage where I could take on more, my body would betray me. I miss the interactions with people, the work that occupied my mind, and the sense of contributing that come with being in a full time job.
Trying to replace all of these, especially when they combined to hit at the same time, is draining. Over a normal life, I would have gradually given up each of them, accepting the limitations in drips. This... this is a buzzsaw at my roots. I am more than this. Or I was. And now, I need to reframe myself in new ways that make use of what’s left.
We also develop the idea that independence is critical. We want to remain independent, to be “not a burden”, to be self-reliant. And this is a comforting lie that we tell ourselves. When we’re born, we are dependent on others for everything, and often, at the other end of our lives, we are again dependent on everyone else. In between, we create our bubble of self-sufficiency. During this time, too, we gradually lose things, but often so slowly that we don’t notice until after it’s done. Like gradually changing from being the hard-drinking party freak to being the one who’s asleep by 9:30, it’s a progression that we accept.
I’m finding that I’m losing a lot, more quickly than I’m comfortable with, and more than I can accept. I’m not having an easy time with the adjustment caused by this disease.
To start, I’ve lost trust in my body, because it betrays me over and over. I’ve lived through the surgeries, scans, radiation, chemotherapy, drugs, pain killers that come with this. My body will signal that I can do something that I enjoy, then lash me with pain, suck away my energy and leave me gasping for air at the simplest things. I’ve adapted over the past 5 years to know that I can do “one big thing” a day, and to spend my effort carefully. So what used to be a full day of wandering through the Market, admiring the stalls, shopping and stopping for a drink is now an hour of more targeted activity. Where I could go to two or three stores in a day to complete my shopping, I must do that over a week or more. I frequently have to cancel plans at the last minute, because I’m exhausted or in pain, and I’ve learned that pushing through to complete something means that I have to spend 2 - 3 days recovering; and missing even more fun!
I travel as a wheelchair passenger, and I miss being able to wander freely in the airport. I’m at the mercy of the person pushing the chair, and I also don’t want to be the difficult passenger. I’m learning to ask that they let me stop to buy drinks / sandwiches so that I’m not parched and starved after a flight, but the days of wandering through airport shopping are mostly gone. I have to use a mobility aid, which makes me feel old, weak and clumsy. I have flashes of anger when people are discourteous— like seeing me approach with a cane in one hand and bags of groceries in the other, and they allow a door to slam shut in my face. Or when they continue walking 2 or more across, forcing me into the road to pass. I’ve fallen in stores, and people have walked past or over me, while I lay on the ground. They have had their reward. Stairs are now a massive challenge, so it limits which friends I visit. Although I’ve got pretty good at finding the nearest elevator or escalator, and I avoid places that aren’t accessible.
I avoid crowds, because there are many, many people who think nothing of sharing their illnesses, and who cough and sneeze openly, wipe their noses with their hands then touch you. So I miss a number of things because I have to be extra careful not to end up in emergency (a location full of sick people!) I think that my immune system is stronger because I have my little dog sleeping with me, but even so... After my treatments, I’m contaminated and have to avoid contact with others for a few days. I can’t hug anyone. I have to stay away from my puppy, who is confused by my pushing him away. In fairness, friends are more aware of my limitations and are often more sensitive, but it also means that any planned gathering may not happen because someone is “coming down with something” (or because my body has betrayed me again and I have to back out.)
I’ve also lost my career, and that is very difficult to accept. I was losing that for a while, as my illness meant that I couldn’t work at my usual levels for a few years, and every time that I got to a stage where I could take on more, my body would betray me. I miss the interactions with people, the work that occupied my mind, and the sense of contributing that come with being in a full time job.
Trying to replace all of these, especially when they combined to hit at the same time, is draining. Over a normal life, I would have gradually given up each of them, accepting the limitations in drips. This... this is a buzzsaw at my roots. I am more than this. Or I was. And now, I need to reframe myself in new ways that make use of what’s left.
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