Let me give you some backwards glances into some of my previous experiences with disease…
My grandfather on my mothers side had suffered with cancer… but he had pulled through it… survived… and lived on… he eventually however suffered a stroke and died, just over a year after my mum died of cancer.
This take place between the ages of 10 and 12…
I lived with my mum. She was diagnosed with stomach cancer. After several aggressive surgery’s, a planet load of chemo therapy, and a PowerStation full of radio therapy , she eventually died within two years.
It was two years of agony for everyone…. god knows what she must have been going through in her head!
Two years of watching the most important person in your life go through pain, lose their hair, smell of chemicals, and ultimately die.
But!!! She NEVER stopped living. She got jobs, she cooked meals, she went out very often, wig on… and eventually giving up with them… wig off. She determinedly raised two children during that time. Apart from right near the end when after a holiday with our dad, my sister and I subtly didn’t go home, dad had taken over.
Even when she was most really quite ill and still in recovery from an operation, she would insist on answering the door…
I can still see her now hobbling across the room holding her tummy where the stitches / staples had been, from the op.
I even remember just days before she died, she was in a care home, and it was my sisters birthday, she barely made sense, and what she was saying was all jumbled up. Im not going to give details because what happened that day is deeply private to me. Suffice to say… she still managed to just about stagger through a very slow Happy birthday on the piano, in a way that made every note shake through me.
The point is…she lived… actually lived… right up to the last moments when, her body simply said no…. and she died.
The effect that had on me was… both devastating… but also enlightening.
As you can imagine, dear blog browser, that was my role model. That taught me that you have to work at life fearlessly and passionately because you don’t know what’s next for you. It’s led me to follow my heart so fiercely that it has at times caused great problems in my life.
But most importantly. You also realize that no matter what… there is always somebody worse off than you.
Also in the last year or so, I have had a cousin (29) killed by a bus. A childhood friend hung himself for being unhappy in himself. An older friend had a heart attack and died . A very wonderful teacher/boss/hero of mine died quite quickly of leukemia. An aunt died suddenly. And Last year I had quite a nasty cancer scare, and had to face that possibility…. it’s also a genetic risk in my family, and something that I am now being monitored on…. all of this has, of course, influenced my thoughts on death, my attitudes to life.
So what relevance does this have to my friend and house mate… Colin Buttermuff…well…
IT HAS LEFT ME IN A SITUATION…
Colin Is suffering…. Suffering badly….emotionally.
What’s making him immediately suffer is the epilepsy. This huge bastard thing that appears un-expectantly, embarrasses him, causes him extreme terror, anxiety, fear, tiredness, exhaustion and god knows what else…. but more importantly it’s a huge smack in the face reminder of his tumour.
A week ago, his family and I went out for dinner as a birthday celebration. Not long into the dinner, Colin had a seizure, a big one… the biggest in a long time…. (He is in the middle of a drug change, so the possibility of them happening was expected)… the surprise of the seizure, however, gave his Nan a bit of a funny turn.
The upshot is, he was devastated…felt terrible…. feels completely responsible… and has unshakingly remained so.
It’s been over a week. Colin has barely left the house. He sits in his room mostly. Getting him outside is an effort, and he does it with great reluctance. He is scared. Anxious…. and very depressed.
I love Colin very deeply. He is and has been one of the closest people to me for nearly 12 years. He knows more about me than any member of my family. And naturally, I hate seeing him like this.
I talked to him about how he was feeling… We talked at length.
I wanted to know what is going through his head… what is he basically feeling…
Essentially… He seems to have given up hope of living at all….
In fact he flat out refuses to engage with hope.
…. THERE IS NO HOPE INSIDE HIM….
Hope, to him, seems like he’s inevitably setting himself up to be disappointed, because he believes firmly that he will become a vegetable… and therefore, what is the point of living… what is the point of trying… what is the point of achieving anything in his life if that’s what’s going to happen to him… and it makes no difference if he has 5 years, 10 years, 50 years…. he is resigned that that is what is going to happen.
SO I talk to him… I try and encourage him to try living… to focus on the day in hand and to take it step by step.
He is refusing (at the moment) anti depressants… and although I completely agree it’s better for him to address and face the things making him sad and anxious… if he’s too depressed to do that… then what does that leave him. We also suspect that anxiety is often a trigger for his seizures.
I also have talked to him about trying to focus on the fact that he has no idea…. nobody has any idea… if what he fears (becoming mentally damaged) is even going to happen!
It is a likely hood… yes… but also between now and then there could be a great many years of living a perfectly normal life. (Once they find the right level of drugs for his epilepsy), there is also a very real chance he’ll live for a very long time and maybe even die of something else completely!
He has a brain tumour…. and now epilepsy.
Now, they haven’t yet cracked the meds with the epilepsy… they’ve been close but nothing has yet proved perfect… it has however only been about 6 months of trying… and as the doctor said, of the drugs he has tried, NONE of them have yet been tried properly, or in significant enough doses, and there are still other drugs out there / combinations… yet to try. However, Colin, I think, fears he might be one a very few whom they can’t treat perfectly…
However, he doesn’t have seizures every day, in fact there have been gaps of 3 or so weeks where he hasn’t had any really. A few tiny ghost ones here and there. But nothing significant. It’s during those times he starts to regain confidence. He starts to feel better about going out and about. Having a meal out.
But it takes just one to destroy all that work…. and at the moment he is very very very down.
NOW FOR THE SELFISH BIT…. CONCENTRATE…
The trouble I now have is two things:
1) I have all the time, sympathy, and understanding for him and his predicament… but I cannot pretend that deep down I dont feel a twinge of anger, and flash of annoyance….
He is a young man… and yes he has been dealt some bad news, and yes he has epilepsy. BUT! There are good things too…. right now he’s not a vegetable, right now is isn’t having seizures every day…. right now, they are trying to medicate the epilepsy, and its nearly there, give it a bit more time…. Right now he has have every opportunity to live a full life for potentially years and years to come.
I even find myself at times wanting to slap him and say… ‘GET A FERGY TOOTLING GRIP YOU SILLY ARSE!! THERE ARE PEOPLE WORSE OFF THAN YOU!’
I want to drag him around cancer wards, and show him children fighting off lukeamia.
I want to him to meet somebody with a high level glioma that’s been given two weeks to live.
I FURIOUSLY want him to just appreciate the sodding life he DOES have and WILL have for the foreseeable future and not fugging waste it sat moping in his room.
I want him to realise that with this bad news comes the opportunity to face your mortality and make the most of your life… to make a difference in the world however small or great, and don’t waste the few good things you have been given.
I want him to consider that, the truth is anyone could have a brain tumour…. there is no public testing system… and anyone could find out when it’s too late. Any of us, could have one and we won’t know until we have developed epilepsy. And that the only difference between now and March this year is that he knows about it…. he’s had it for 10 years…. but only now does he know about it… and it that knowledge that’s making him choose to give up…
I want him to realise – what’s the point of giving up today because he’s going to be giving up for many many many years… why not wait until he’s really in the muck…and then consider giving up… that would be a start….
I want him to see that people much worse off than him (LIKE MY MUM FOR EXAMPLE) had more determination, and zest to fight and live…
I want him to accept that unlike my cousin (same age) who had his life taken from him devastating his family… Colin has the opportunity to look ahead and make the most of now.
…..but the thing that makes me cross the most is….. I WANT HIM TO REMEMBER THAT HE IS STRONGER THAN THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
All the things I have written there probably make me sound angry, selfish and that I have totally misunderstood what Colin is going through. And yes I can see that.
But dear reader, please believe me, I haven’t.
What I am doing is being honest. The whole point of writing this is, I guess, is a chance for me to be honest. These are things I haven’t said to him… and probably won’t.
But they are things that have at times flashed through my head… feelings I have that just simmer deep inside. And although they may sound harsh, I think there is some justification, and reasons there that I feel them. They are not coming from a bad place… they are coming from a place desperate for Colin to find a way of living again.
2) My other problem is… I feel an overwhelming sense of guilt at the moment. I don’t know how to conduct my life…. I like to get up and go out, I’m fierce with my career, I spend nearly every waking hour doing something, be it painting, puppet making, writing, job hunting, working… ANYTHING… just doing something productive.
In a way I am the opposite of Colin. I am so so terrified of dying young, from seeing my mum die young, my family dying off, having a scare with cancer… having to be watched because I’m a high risk of getting it. I am SCARED TO DEATH!!!! Of dying young….
But the consequence of that is I want to achieve EVERYTHING NOW! I’m 27 and I’m pissed off I’m not at the top of my career…. I want to publish a book, I want to illustrate kids books, I want to tour more, I want to make films, I want to write and produce my comedy series, I want to fall in love… and I want …no… I feel, I desperately need to do it now! Just in case I die tomorrow.
I want to touch peoples lives. If I was to die tomorrow, I want people to be at my funeral thinking, what a shame, he brought something good to my life…
I want to leave a positive mark on the world in some way…. it’s an almost feverish desire.
I guess, therefore, it my desire to live, that’s at odds with Colins desire to give up…
But also, I feel terrible for going out, and trying to do these very things.
I simply feel bad about doing things, and him not coming…. or him sat at home being sad…
But what can you do? If I stay at home all day everyday, I’ll not be a good influence on him eventually. But then not being here, I guess I’m not being supportive…
It’s left me. Unsure of myself.
This has taken me a long time to write, so I’m going to wrap it up now… as I don’t need to reach a conclusion, and the point of this is to discuss view and develop my thinking, over time and into the future.
However, I will finish by saying this.
Right now I’m at a loss.
I don’t know what to do.
I want to help Colin…. and I want to help him be happy. But he is very depressed…. and to be honest… fair enough… he has every right to be and every reason to be… but I want to help him live.
And the thing that upsets me most is this..
No matter how much support… no matter how well he does…. no matter how much we can help, and no matter how much improvement he makes…. just when we think we see glimmers of hope and happiness..
Colin is hit with a seizure like the one he just had… and then follows the tears…. and then follows the unravelling of all the good work he had achieved…. and to be completely honest…. I’m not surprised… the seizures are bloody horrible for him to go through… and it’s heart breaking and sickening to see the emotional and physical devastation they leave him with. They seem to be a force that neither he nor us can compete with…. and they seem to be winning.
And when I see them…
… I’m sat feeling… hopeless… like a useless friend.