Tag Archives: friendship

Empathy

It took longer than I anticipated after my diagnosis to be able to empathise with the lives of others.

From the start, and I know this because I wrote a blog about it, I said that I did not want things to change with my friends or family, I said that I was the same and I was able to support people if they needed it. I am not talking about supporting people in supporting me, that would just get complicated, what I meant was, in spite of My Myeloma, I could still be a friend.

The problem with this sentiment, as true as it was and still is, my mind, at times, has been otherwise engaged. And then some. As much as it pains me to admit it, when your existence has just been turned upside down and you are taking an obscene amount of medication, the trials and tribulations of everyday life, in the grand scheme of things, do not seem that important, and even on the occasions when I knew they were, getting my brain to engage, was difficult. I am referring to other people’s problems here, I readily admit that My Myeloma exaggerates everything in my life.

For a long time, I genuinely believed that I had lost all my empathy, in particular, my ability to sympathise. For a long time therefore, I feared that My Myeloma was turning me into a rather horrible person. The kind of person I only allow my family to see… I would look at people being happy or sad and, predominantly, all I would feel was a blankness that I knew was wrong. It is not that I did not care. I believe the fact that I knew what I was feeling was wrong, shows that I did care, it’s just I did not know how that worked alongside my self preservation mode, which has a big sign on it that says ‘my life is worse than yours, so get over it’… Evidentially, I *may* have felt a little bit of something other than the blankness. Something green. I continued to worry and dwell about people alone in my bed, like I have always done, being careful to never actually show them that I care (you really are lucky if you get a text message, the man hours that go into one of those puppies is immense), but for a lot of the time, I did not know how those thoughts could possibly fit in with my new life. I feel it is important to make note of the last point, in case you are reading this, thinking that I am a selfish monster. I promise you that that is almost certainly not the case.

Are you confused yet? I am and I have been thinking about this for months. It’s like peeling an onion. Multilayered.

I have discovered that celebrating with others is far easier than commiserating with them. I actually like it when people get good news or indeed, if the people I love are happy. It is rather pleasant to see a smile on a face now and again. After the initial shock of my diagnosis had worn off, I actually found comfort in it. Let us be honest, if I could not be happy for other people by now, I would never be happy in Mylomaville would I? So, as I have seen friends fall in love, buy houses, move in with their pumping partners, get a new job, release an album on iTunes, get engaged or build a Lego airport, I am genuinely pleased for them and it makes me smile, and it most definitely gives me something to talk about, which is always a bonus.

It also means that I am not a total disgrace to the human race and that I am a nice-ish person. Score.

Happiness therefore, is not the problem.

The crux of the problem therefore, really does hinge on my levels of sympathy for others or the lack there of.

I do not speak for all myeloma sufferers when I say that when something happens like getting a cancer for which there is no cure, all the stuff you used to over think and worry about, while they may still be present, pale in insignificance compared to The Diagnosis. They no longer keep you awake at night and only rarely do you cringe with embarrassment when you recollect previous indiscretions. That alone is a learning curve and unfortunately, it is a journey one has to take by themselves.

For me, in my life, I am the only one suffering from myeloma, nobody else in My Network is, and so their lives continue. People can support me, but ultimately their barometer stays the same. The bar for them, of what is shit, has not been raised (or should that be lowered?) like it has for me. What matters to them and keeps them up at night, whilst it may seem trivial to me now, it isn’t for them and strangely enough, that fact is not a personal attack on me. Getting my head around this was beyond difficult and it continues to be so.

For a long time, I did not believe that these two realities could coexist.

I have made many a song and dance about how I wanted people to treat me in exactly the same way as they did before my diagnosis, but my desire for normality, did not really take into account that things had changed. What would have once been normal conversations about a crappy week, were perceived by me to be thoughtless gloating about the lives of fabulous twenty somethings, something that I cannot even aspire to. The anger and jealously this created within me, made me bitter, paranoid and more angry. Garnering any sympathy after these little worms had wrapped around my brain, was next to impossible.

After a while, an undisclosed period of time, because even I do not know when it all suddenly clicked in my head, I realised I could be sympathetic and I could be the friend I remembered. Only if I tried really, really hard. Actually, it is possible if I throw away the bad thoughts as soon as the creep in to my head. Sensitivity also helps. FYI.

Until this happened, I could manage tales of woe if they were presented to me in such a way that acknowledged my situation. I know this sounds self indulgent, but I could not have somebody using adjectives like ‘worst’ to me about their lives, because they don’t know what ‘worst’ is. Perhaps I don’t know what it is either. We know our ‘worst’ and that is it. To prevent myself from being in a situation where I had to challenge my compassion, I avoided certain people, I had to. Yet another thing to make me doubt myself and my relationships, but that self preservation mode is there for a reason. It stops me from screaming at people, telling them that they are lucky and they should just shut their faces and enjoy the weather/their bad date/their day at work/the crappy pub/their train journey/their dinner, because there may come a time when they personally long for a time, in a galaxy far, far away, when these are the biggest issues of their day/week/year. Issues, which leave no lasting mark and can be healed quite easily. Probably with a Twix.

You see, I am like, so totally over it.

I guess, very inarticulately, what I am trying to say is that the sheer weight of My Myeloma overpowers everything else. I want to act and feel a certain way, akin to how people treat me, or once treated me, but the myeloma seems to always want to pull me in another direction. I could just about manage its shadow if my life were just me, but it is not. My Life includes The Network and everything that happened to them before I was diagnosed still happens to them; people still get sad and people still get happy for genuine and superficial reasons and I want to be a part of that. I have to remember that I was once one of those people who would cry over spilt milk.* Somewhere deep in my memory, I have to remember what I was like, so I can metaphorically hold my friends’ hands because I would never actually hold their hands, whenever they feel blue. It is always going to be difficult for me to sympathise because My Myeloma is so much bigger, there is no escaping that, but I hope that I am getting somewhere closer to a point where My Myeloma does not polarise. In terms of my friendship and what I can offer, out is the irrational anger at inconsequential pastimes and in, is cautious reinforcement fitted with an emergency sympathetic noise button. I hope.

Unless of course you have a cold, but that is worthy of another blog completely.

EJB x

P.S. Myeloma may have sucked out all my sympathy, but it has strangely replaced it with an unhealthy dose of over sentimentality. It’s a true story. You should just hear all the nice things I say about you behind your backs.

* To be clear, before the diagnosis, I would never have actually cried over spilt milk. It was a turn of phrase. I probably would have just gone really quiet and hid under my duvet for a bit and/or got drunk.

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An Altruistic Act Of Friendship

Attention, Attention, Attention!

It has finally happened.

I am not talking about me losing my hair, that was a week ago, but finally, after months of careful planning and fundraising, the dear sweet, Iana Peppiatt has finally shaved off his hair. His long, hippy like locks are no more. They have been deposited in a plastic bag in my kitchen bin. I believe what started out as the ramblings of a drunken man upset that his friend had been diagnosed with cancer, has ended with him losing his hair safety net and I believe he is far more attractive as a result. As one of the many spectators, privy to Wednesday night’s events commented, Ian is now going to get ‘so much fanny’. Not my words obviously, I would never be so crude.

So, the Big Head Shave was on Wednesday night. All the dignity I unexpectedly saved with how I did my deed was, rightly lost on Ian’s experience. Well, it was for charity after all. As noted, we had spectators, there was a live video feed, some awesome banter, alcohol and I made nibbles. I bloody love nibbles.

I hope Ian does not mind me saying this, but in the hour or so prior to the Big Head Shave, he was nervous. Probably the most nervous I have ever seen him, and I have known him for a good few years. At this time, I will admit, that I could have been nicer to him, but it was just too much fun winding him up…

He started the evening looking like this:

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And ended up looking like this:

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I was given the honours of firstly cutting the mane and then shaving it. I did not relish the prospect of doing this, but my when I started, my, did I enjoy myself. Housemate had to assist a little because I was probably being a little too delicate around the ears. Sure, I also got a little sweaty. The wool dress was probably a bad outfit choice for such a high pressure role involving a number of stray hairs, but I will remember that for the next time I am put in the position where I am responsible for removing one of my friend’s defining features. If you want to see just how much I enjoyed myself, take a peak at this…

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If you are tempted to see more, then the video footage is still available http://www.ustream.tv/recorded/30483575?utm_campaign=www.facebook.com&utm_source=30483575&utm_medium=social… One viewer commented that it was “The best TV ever”. Praise indeed. It is recommended viewing for anybody who thinks that shaving off your hair is not a big deal. It is. And the beauty of what happened on Wednesday, is that Ian did not need to do it. Ian did it to raise money, but also to make me feel better about what has happened to me. Way back when in October when we first started talking about it as I was losing those first few strands of hair and I was terrified, it gave me the strength to get on with it. Watching us reach our target on the Just Giving page, seemed somehow to make some sense of the madness that was happening around me, a madness that I had no control over. On Wednesday, when I watched Ian lose his hair, well, when I personally cut off that surprisingly soft ponytail, it did make me feel better. I do not know whether my feelings were selfish, but it did. Sod the charity, seeing somebody I know go through what I have had to go through, made me feel better and that includes being a witness to his fear beforehand. I found an inexplicably amount of comfort in his kindness and I will never be able to properly express to Ian what his sacrifice means to me. I do not think I would have been strong enough to do that for another person. I constantly think about a conversation I had with some friends in July, when my pain had started and I did not know why, and for some reason I said that I would never lose my hair for anything less than £20,000. How circumstances change.

Regardless of how it made me feel, it was for charity and Ian has smashed his target of £1000 and he is currently sitting on a total of £1345 all for Macmillan Cancer Support, who, I must say have supported me so wonderfully, as part of my Support Network during this hair raising experience. Even on Thursday, when I rocked up to the clinic in one of my wigs, their comments made me feel a little bit more confident in my synthetic hair. So, for the last time, even though our hair is gone, you can still donate. He shaved off his hair for goodness sake! http://www.justgiving.com/shavingmyhairwithEJBones And I do, truly thank those who have donated already. Your generosity has been the dogs bollocks.

I will finish this blog, again with a massive thank you to Ian. Ian who for so many years I have associated with his long hair. Defined sometimes. I have only known him with long hair, but the thing is, ten minutes after it happened, I felt like he had always had short hair. His altruistic good deed, showed me that hair is just hair and that his being and his personally remained in spite of him not having that moulting mane. I guess that this also applies to me, and boy, did that made me feel better. As big of a deal as it is for us personally, it, the hair, did not define us. And that is nice to know.

Ian Peppiatt, you are such a good egg. And for old time’s sake, here is a picture of us in our former glory.

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EJB x

P.S. Donate.

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