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.
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.