On being judged

Trigger Warning: This is a rant. There is some mild swearing. I am angry!

I have had a rather upsetting little contretemps with a so-called friend…

It happened after I posted this on Facebook: “Today will include hair colouring (if I get a shift on), Tai Chi, knitting, meeting the editor of a local paper about writing for them, completing a DLA form and a scholarship application for Playback training, then maybe some writing and more knitting in my chair. Phew!”

My friend [sic] asked “Do you need a scholarship?”

Now, maybe that could be seen as a harmless enquiry, but my guts reacted with a clench – I felt I was being judged.

So I checked it out with her… And yes, I was being judged. She claimed that she wasn’t judging me, she just “…had to wonder at [my] application for a scholarship… considering [my] jet set lifestyle and recent shopping sprees, is all.”

Have we known each other for over twenty years? Have I been supportive of her health issues? Do I trust her to make valid decisions about her life? Yes, on all counts.

Did she read my recent post about my not normal life? Does she understand anything about my situation? Does she get it? Did someone not tell me that she has been nominated judge and jury over my life for the day? I think perhaps not, on all counts.

Because I am making the most of my time and funds…

Because I am travelling and doing as much as I can, spending money much more freely than ever before (on other people as well as myself), admittedly with some support from my family, but mostly using savings that I would otherwise have saved until I retire. By the way, that will be the retirement savings that are unlikely to be needed because that will be the retirement age I am unlikely to reach – not even the retirement age that used to be expected (60), let alone the age one has to attain now, due to government budget changes, in order to get the state pension(66)…

Because of my deliberate openness in sharing all of my activities, not hiding, being proud, bold and quite decadent at present… after over two years of feeling sick, fatigued, disabled, isolated, in treatment, being prodded and poked with cannulas, biopsy needles, chemo and other drugs, undergoing tests and procedures, experiencing a variety of side effects, a couple of hospital admissions and regular visits to clinic and Daycase, none of which is over… (More on current treatment shortly, once I have regained my equilibrium.)

And yes, perhaps I am playing the cancer card. Well, guess what, surprise surprise, I have cancer. I have an incurable cancer. I have every right to play the cancer card.

Because of all this, she is “… sometimes shocked by [my] apparent lack of awareness around [my] privilege.” So has she decided that perhaps I should “use [my] savings to do Playback and leave the funds for people less fortunate.”

This is all without knowing anything about my awareness of privilege, or how the scholarship funding is determined, or about any conversations I have had with the Playback School, or about the strong support I have from the school and without any empathic enquiry… In fact without knowing very much at all about anything, only that she felt “uncomfortable”.

I believe “uncomfortable” is a red herring. I think envy is playing a role here. I did suggest that, but understandably was met with denial and the counter that “[she] too live[s] with a lifelong, sometimes, life-threatening condition”.

Now envy is a strange thing, isn’t it? I am pretty sure she would not wish to swap with me, to have an incurable cancer shortening her life. And if she did have cancer, I am confident that she too would grab every opportunity to take up training, volunteer, make a difference, travel, spend on herself and other people and do all those things that one puts on a ‘when-I-have-time’ or ‘when-I-retire’ list, or what I have called my List for Living.

Privilege is another strange thing. Yes, I am privileged to come from a family with money to support me and that for many people facing cancer, even in the UK, where we have the NHS, not to mention other countries where treatment is dependent on having the funds to pay or the ability to fight/negotiate with an insurance company, where no money = no treatment, end of story. Yes, I am very lucky not to be facing poverty on top of ill health, pain and an incurable cancer. However, I believe that I am using my privilege to make a difference.

Aside from the fact that judging people based on your perception of their experience is really not acceptable, not helpful in terms of changing the other person’s behaviour, if that is her intention, and it’s definitely not empathic. By the way, this friend is in training to become a counsellor… She is not the first of this ilk, nor I doubt will be the last. Hmmm… Walking a mile in someone else’s shoes comes to mind.

I resent being put in a position of feeling the need to justify my choices, my spending, my application for help with funding, my reasons for asking for help. And I am not about to start here.

Oh yes, I was tempted to lay it all out here, but that idea makes me even more angry. I am not asking for her or anyone else’s permission. I do not wish to be judged full stop! If you cannot support me in my decisions and activities, then go and whisper about it to someone else who cares for your opinion. Because that is all it is.

I resent the stress and self-doubt that having this conversation has caused me. I resent my politics being called into question: “I often wonder where your ‘politics’ actually are.” I beg your pardon?! WTF???!

One thing that has changed for me during these past three years is a strengthening of my bullshit radar. While I have become softer, more compassionate, more appreciative and more generous (especially while on steroids) towards those whom I love and who love me, not to mention towards strangers and charitable organisations, I have also become a lot clearer about and quicker to respond to behaviour that is unsupportive, detrimental to my well-being, or even downright toxic.

I will no longer tolerate people who purport to be friends but behave like enemies. I believe the current terminology is ‘frenemy’. I already have an internal frenemy, in the form of myeloma! That, at least, is just going about its own business, which just happens to be detrimental to my health, but I don’t perceive it to be actively malicious. It’s not out to get me. And it was never a friend, so I do not feel hurt by betrayal.

In the past, in the years before cancer, if I encountered challenges like this, I would spend many troubled hours soul-searching and berating myself for my failings. I would take on all sorts of crap that other people threw at me. I am not saying I was always right, that I never made mistakes – of course I did – I still do. But often I was so keen to make things right, to avoid confrontation, to take the blame for things, to question myself before anyone else, to please people rather than validate myself, that I would twist myself into all sorts of painful positions to put things right that many times were not my wrongs.

These days, I will not do that so readily. I am a lot more in touch with my gut feelings and I trust them more than I ever did. I can admit being wrong when I believe I am, and I do my utmost to put things right when I mess up, but I can also stand up for myself in ways I wouldn’t have dared to do before. I feel stronger and more assertive than ever and less afraid of the discomfort that challenge and confrontation brings.

Some of this new-found strength of character is from going through all I have experienced in the last three years. It has brought out a warrior spirit in me. Some of that is due to the influence of a friend, whose directness and fiercely protective attitude around me has allowed me to experience a stronger sense of myself and my value. Standing up for myself is valid. This friend’s bullshit detector is on full-strength and for the most part I trust her, even when we don’t always agree on the best way to deal with the crap.

So, all the haters out there, please take note: You are no longer dealing with a doormat. I do not need nor want your heartless, envious judgements or your lack of trust in me. If that is what you bring to me in the name of friendship, then I no longer need your friendship. Fortunately, along with everything else I have encountered on this journey, I have found plenty of good friends, a strengthened bond with my family and people who were just waiting to appear in my life, people who accept, support, care for and love me. And the feeling is strongly reciprocated. I am fiercely loyal to my friends, grateful to and proud of them.

Ok, I think I’m done. Rant over. Thank you for reading. Supportive comments are welcome. Anything else, please take elsewhere.

Identity shift

On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are going, as is my consultant, whom I saw in clinic on Thursday that week. More on both these topics later.

After a six-week break, it all felt strangely alien, less comforting, less like ‘the community centre’ than usual. I saw a friend and one or two familiar faces, but it felt more like the kind of occasional hospital appointment that ‘normal’ people have from time to time, that you attend, see the clinician and leave promptly, to get on with your day – like a place you don’t belong and don’t wish to belong, unless you’re yearning to be a doctor, nurse or medical receptionist.

Going to regular clinic appointments has been a huge part of my life for over two years. As they are now decreasing in frequency, it feels strange, like I have to let go of something that however unwanted and unpleasant, was nonetheless a safe place, where I am amongst peers, people who understand, with whom I do not need to explain, a place where I belong and where very little is expected of me because I’m ill.

As another blogger, Helen writes:

When you have cancer your life is changed for ever. At times it seems to spin out of your control. There are big question marks against all the things you thought were certain.

And yet there is one thing you can reply on. The regularity of your treatment. The chemo sessions and all the other associated appointments are comforting. Having a medical schedule gives your life shape and it gives you back some control.

Three weeks ago, I took my first solo long-distance drive to West Wales (4-5 hours) since the transplant. I had been feeling quite anxious about it, as up till now, when I’ve travelled that far, a friend has shared the driving with me.

A44As I drove, with my choice of music playing loud enough to sing along, the roads clear, the winding pass to Aberystwyth absolutely gob-smackingly glorious, with the sun shining, the sunroof open, sunglasses on – yes, it was THAT sunny day! – I began to notice that I was okay.

I was doing something quite normal, without needing help or rest (or steroids!) :) .
Of course I was tired and needed a couple of Paracetamol once I arrived, but I did it… on my own! And who wouldn’t be tired and aching after driving 4-5 hours?

Great celebratory driving music!

While I was driving, I had a revelation – a minor epiphany. I realised that, for over two years, I have had an identity as an ill person. And I have been ill, so that’s not only hardly surprising, but it’s totally allowed. With that unbidden identity came some advantages, advantages that I am loath to give up. But now that I am beginning to feel well… perhaps it’s time to ditch the old identity? Perhaps it’s time to quit thinking of myself as an ill person? Perhaps it’s time to give up the sneaky advantages? To see myself differently? To take up life’s challenges with a slightly shifted perspective? So I decided to no longer think of myself as an ill person. It seemed like a radical, and slightly scary idea.

Whereas following the autologous transplant, I noticed improvements in my stamina, morale and general recovery on a week-by-week basis, over a fairly short period of time (around 3 months), recuperating from the allogeneic transplant has been much slower and longer, not to mention a bumpier and more anxious ride. At times it has felt like a permanent state, something that would never end – that I would always be in recovery.

To some degree I’d grown to accept it and I’d adapted to it. But although acceptance allows me to be okay with my current reality, adapting to it can be a way to retreat from the world and no longer reach for the things I want, maybe no longer even allow myself to want. Well, if you can’t have or do something, it’s better not to want it than to feel frustrated and disappointed.

So giving up my identity, my status, as an ill person feels like quite a daunting, psychological giant step. But, at this point, a realistic one… Although the recuperation process is not completely over yet, I definitely notice improvements, maybe not week-by-week, but certainly month-by-month. I look back at what I was able to do or how much rest I needed after doing things and I see that these days the doing is more and the resting is less.

Finally and slowly, I’m learning to trust the process, to trust that my energy is improving and will improve enough to have a good life, that my appetite for life is growing stronger and will continue to grow, that I am in remission and that there is a good chance of a long remission. I may have turned some invisible corner…

It’s a strange state to be in. When someone asks me how I am, or, something that happens ever more frequently these days, when someone tells me how well I look, I still find myself wanting to add on a protective get-out clause, a leftover from being ‘an ill person’, like “I’m ok… BUT I do still get very tired.” I am re-training myself to respond with a beaming smile and a hearty “Yes, I’m doing really well.”

No, I’m not exactly the same as I was, I’m not completely well as I knew myself three years ago. I do still suffer with fatigue, I do need to manage my energy and I can’t easily do certain chores without getting back pain, but I have friends with all sorts of pains and conditions that they manage, take tablets for and live with. They don’t constantly tell me exactly how their condition is unless it has flared up or they’ve had a crisis. And more importantly, they get on with life, within the restrictions of their health conditions. So what’s the difference?

Thinking of myself as a well person, or at least not an ill person makes a real difference to how I face life and how I spend my time. Successfully driving to Wales felt like a real challenge and was a gratifying eye-opener. Once I arrived, I applied my new-found sense of ability (as opposed to disability) to pull my weight and play a more active part in activities. Not using my illness, or fear as a reason not to do things. And not needing quite so much looking after, although that’s always nice from time to time… even if you’re not ill.

IMG_1062So while I didn’t do much washing up – that really hurts my back – I did manage to sweep the kitchen floor at the hostel. I wasn’t up to the disorienting hubbub of the large group, but I happily connected with friends in ones and twos. I didn’t go for any long walks or cycle rides, like some of my very active friends, but I did walk up the mount at Mwnt with some of them. Admittedly we took the path with a gentle incline. Enjoying the view from the top and seeing a porpoise was wonderful.

I wonder if the reason I felt so odd at clinic last week was due to my internal identity shift… Maybe I don’t belong there right now… at least not in the same way as I have done for the last two years…?

It’s only a vague sense just now and I feel reluctant to put it into words in public, in case I’m expected to run out into the world, take up full-time work, take up full responsibilities, give up the welfare benefits I receive, give up my blue badge, not to mention other support that I get because I’m ill. I also have a vague unease about tempting fate. But it’s a beginning and the very fact that I am able to willingly embrace no longer being an ill person, is probably a reliable sign that it may no longer be the case.

Clean Living

I’d been living in a closet. No kidding, a closet. I had a bunch of friends who went to Bryn Mawr College, which was, at the time, an all girls school. I spent so much time there that I’d often crash on someone’s couch or window seat. The problem was that it was dangerous. I could be easily found by one of the house parents and then all hell would break loose. So one day my friend Marcia suggested that I just take up residence in her walk-in closet. It was big, larger than a couple of bedrooms I’ve had, so I figured why not? It was a pretty cool time, music was in its heyday, or at least that’s how I felt about it. The sixties was a time of change and experimentation. So my friends and I would sit around, maybe smoking a little dope and watching Rowan and Martin’s Laugh In. Then, with background music like the Beatles White album or Janis Joplin’s Cheap Thrills, we’d talk late into the night about just about everything.

It was a little after two am when I decided I needed to take a shower. There was little chance of running into anyone else in the bathroom at that hour. It was, in retrospect, a risky proposition. In spite of the fact that  I was a fixture at the all girls college, there were some, student and faculty alike,  who wouldn’t appreciate a guy in the shower. Of course, there were a few of the girls who’d be flat thrilled about it too. Anyway, I grabbed some clean jeans and one of my trademark button down collared short sleeve shirts and skulked into the bathroom after making sure the place was empty. The school had really great water pressure, a fact I liked for the massaging deluge and the volumes of steam created by the spray.  Anyway, I was in one of the stalls and the water was beating down on my back while steam roiled around creating a thick misty fog in the room. Which is about when one of the house mothers dropped by to take a shower. She was a docent of fifty-plus years, slim and a bit hatchet faced, who kept her hair pulled severely back into a bun. She always looked at me and the other gentleman callers with obvious disdain, her attitude embracing the concept of summary castration as nothing short of ecstasy. The girls referred to her as “the Hawk,” and would give an involuntary shudder at the invocation of her name. To say she was strict would be like calling a billion dollars petty cash. She was known for trying to chat up the girls conspiratorially, and finding the admission of some offense, would pounce and invoke some form of restriction.

I watched in horror as her robe dropped into a heap atop her slippers and she stepped into the next stall to mine. I heard her start up the shower and doing so, she starts talking to me about how she just had this really great night with her boyfriend. She rattled on for about five minutes before she said something that required a reply. I wanted to make a break for it, but there was no way that I could do that, I’d have to pass her shower, and none of the stalls had any kind of curtain or door, just the dividers that made up the stalls. I don’t remember what it was she asked me, but I remember shoving my face into the stream of water coursing from the shower head and bubbling a high pitched “uh-huh.” She asked me how I’d spent my evening, and I replied in the same high pitch bubbling that I’d “just hung around.” She started telling me how I should get out more, take advantage of my time at college and how it would be the best time of my life. I just kept “uh huh-ing” in what I figured had to be the world’s worst girl imitation.

Now, it was the end of the sixties, October 1969 to be exact, and I had hair that hung down to my shoulders. I was pretty thin, weighing in at a svelte 135. Anyway, I heard her water shut off and I faced the wall and buried myself in the spraying water as she peered through the steam and around the stall divider. She told me to sleep tight and then I heard her dry herself and saw her pick up her robe. A moment later, the door clumped shut and she was gone. I imagined her thinking that poor girl in the shower had the ugliest rear end she ever saw and maybe even felt pity as she returned to her own room. I finished my shower and snuck back to my closet. I told Marcia, “you won’t believe what just happened.” She listened wide eyed as I recounted the close call.

The following day I returned to the dorm, walked into the room and a group of the girls were sitting cross legged in a circle and laughing so hard they had tears on their cheeks. Apparently the house parent had told Denise, a girl of my very general size and hair color that she meant what she said, that Denise really should get out more. When Denise asked her what she was talking about, the house mother said “Wasn’t that you in the shower last night?” Of course, Denise said no, that she’d spent the night with friends off campus. Failing, of course, to mention that she spent the night with one of the guys from neighboring Haverford College. The house parent got a confused look and went off muttering to herself. Of course, word of the strange conversation met up with the tale of how I almost got caught in the shower, and the girls were having a pretty good hoot over it all. From then on I would be occasionally referred to as “Denise.”

I lived in and about Bryn Mawr College for the better part of the winter, about two and a half months, until I decided to move to California in the early spring. In that time, I never had another close call in spite of regular showers and a virtually constant nighttime presence in the dorm. The thing is, there was nothing creepy about it. The girls and I were friends, and I was more of a brother image than boyfriend. That’s not to say that I didn’t take a romantic interest in a few of the college ladies, and when I did they were residents of other dorms. But it was always on the up and up and when bedtime came, I was always the gentleman –a fact I sometimes lament, especially under the disbelieving stares of some I’ve told about my stay at Bryn Mawr. But one of the common conversations in the dorm was what parents and faculty might think –had I been discovered. Of course, there would be an assumption of the worst. No doubt my recent departure from the military would have only added to the angst and ire that informed parents and faculty would feel. But the experience was a good one and came in handy when I had my own kids who, in their late teen years, stayed out all night. I didn’t immediately jump to conclusions, but looking back on my own life invested my trust instead. In talking with my kids and looking back, they told me they appreciated my faith. They also told me that there was never really any reason for me to have been concerned. A part of the reason being they didn’t want to betray my trust.

Parenting is a tough road. The recent marriage of my oldest son has caused me to peruse memory lane, and recall many of the moments from my children’s lives. I did feel anxiety about their safety at times, but those were occasions of their first departures from home and their home town, their first flirtations with adulthood. Any parent who claims to have no feelings of fear on those occasions is either a liar or a sociopath. But as my kids grew up, I did my best to give them a good value set. When they grew and began to make forays out into the world, I had to have faith in them. After all, out in the big wide world, there would never be any way for me to know who was using their showers.

Fb-Button

Washing the Hog

Subaru advertising is making me nuts. They spend a lot of time trying to associate their cars with warm and loving relationships full of romance and adventure. But it also appears to portray relationships as being like the cars as well; indicating that everything wears out. So here’s one ad showing a man reminiscing his time with a previous girl friend and then shows that while the woman changed, he kept the car. I don’t know if anyone else sees this in those commercials or if it’s just me, but it drives me a little wacky.

With now 60% of all marriages resulting in divorce, perhps the governing bodies in Mexico City have it right by offering licenses for marital contracts of two year terms. At the end of the two years, the couple can go their own way or choose to re-up. I have to wonder why someone would enter into such a relationship; I’m thinking why not just live together. That way, whenever the event comes around that you thought would cause you to be divorced in two years, you can go your separate ways. Of course, it turns the idea of relationsips into the same sort of commodity as a used car ownership.

I always figured that marriage was supposed to be a committment in the long term. To me, there are a few reasons for divorce; infidelity topping the list. I never got the concept of a partner shooting their spouse’s lover, I always figured you should kill the spouse, what with them doing the betraying and all. But apparently these days a lot of reasons suffice to break the bond respresented by the circular band on the third finger of the left hand. Everything from political disagreement to leaving public hairs on the bath soap seems to create solid reasoning for denouement.

I figure that marriage becomes valueless when there is no sense of trust and support for either or both of the parties. So it doesn’t take some particular bad deed to cause a breakup. People can and do grow apart when the mix wasn’t right from the get go, or as a result of character change over time. When one or both people become furniture as far as the other is concerned, then there is no point in the union.

Of course, marriage mens different things to different people. One can’t easily, in my opinion, compare the marriage of high school sweethearts with a marriage arranged by family before the bride or groom was born. Or compared with mail order marriages, marriages of convenience, or shotgun weddings. There are indeed a lot of different brands for this particular product. So maybe I just don’t know enough about the subject to have a valid opinion about it. Then too, I’m divorced myself. But I did have a negative reaction to Subaru’s characterization of wedded relationships being akin to vehicle ownership. That reaction came from somewhere so I must have an opinion anyway.

Then again, I guess it’s a little foolish to have a reaction to advertising, it’s all hogwash anyway.

Trust

by Thomas R. Smith 

It’s like so many other things in life
to which you must say no or yes.
So you take your car to the new mechanic.
Sometimes the best thing to do is trust.

The package left with the disreputable-looking
clerk, the check gulped by the night deposit,
the envelope passed by dozens of strangers—
all show up at their intended destinations.

The theft that could have happened doesn’t.
Wind finally gets where it was going
through the snowy trees, and the river, even
when frozen, arrives at the right place.

And sometimes you sense how faithfully your life
is delivered, even though you can’t read the address.

“Trust” by Thomas R. Smith, from Waking Before Dawn. © Red Dragonfly Press, 2007. 
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More about Thomas R. Smith. What does health care reform have to do with poetry? A timely essay by Mr. Smith: A Guide to the Health Care Labrynth.