UPDATE: Therapy for my Condition

No appointment today. My mum was on the phone for half an hour - you have to call from 8.30am for same-day appointments - only to be told that they were fully booked. So she's thinking of probably booking in advance for next week once she gets her rota tomorrow.

Again...I don't know what to feel. A part of me is kind of relieved, but my mother was so looking forward to it that a part of me feels down about it, despite me not being keen on the idea. I feel like I'm going ahead with this for her sake, rather than mine - she wants to sit in on the sessions, but there's no way I can talk openly while she's there. Perhaps, I should suggest that she talk to someone about how she feels...because, while we are close, we don't have that kind of relationship.

I've never talked to her about my feelings where I'm concerned, but always on other things. As far as she's always known, I'm a well-adjusted person...but truthfully, I'm far from it...well it feels that way. I've lived my life according to her standards; I've always been there for her, putting my needs and feelings on the side to make way for her. She isn't demanding in that way, but she's invested more emotional time in her sons than she has me...it's probably why I find it hard to talk about my feelings, and as a result I'm not as emotional as I should be. I do feel emotions, but often...I don't know how to convey them. I don't know, it's hard for me to put it into words...

But anyway, the person she thinks I am is not who I am, and in the past when I've tried to show her the real me...she doesn't seem to like it. So, I wonder if because of my condition, she's only just starting to realise this and doesn't know how to approach me, so she wants me to have someone to talk to. But...my whole life it's been that way; my only companion is me...I've had to figure out and deal with things by myself because she was never there, which is why I have a constant conflict within myself between my immaturity and my maturity.

The one person I feel that I could have talked to openly about this...isn't around anymore, and the friends that I do have, I don't see or hear enough from to even consider using them as a sounding board. Then again, I'm happy to enjoy what I have while I still can, so I don't really want to bog anyone down with all this stuff. I just want to hold onto 'normalcy' until I can't anymore.

Therapy for my Condition

Yeah, I know I said that I'd have heaps of posts up ages ago...but I just haven't got around to them. It's all down to me being lazy, but I hope to have something else up soon.

In the meantime, this here is a post regarding my condition. For some time now, my mother's been suggesting that I make an appointment with the doctor so I can talk about my condition and get some information on how to deal with it, since it worries her that I have no-one to talk to about it. I mean that's the downside to having a rare condition - not a lot of people have it and because of that, there aren't many support groups in, what would be for me, a conveniently accessible area. I don't like travelling too far from home just to go somewhere for an hour, and since I live on the outskirts of the countryside and city, it makes it a little harder for me when you factor in petrol prices and public transport costs.

Tomorrow, my mother has the day off and suggested to me yesterday that she'll make the appointment and come with me to the doctor's because I mentioned to her about my goals and ambitions sometime last week, and my fear of not being able to accomplish them due to the time limit I have. I don't even know how long I have before I'm no longer in a position to do the things I want to, and so I don't really want to waste time doing things that won't help me in those goals. It doesn't help that I work 4 days a week, volunteer 1 day a week and my weekends and any free time I have are used working on small things and catching up with my TV. I think it's time for a timetable or something, you know, like allocate an hour or so a day doing something like working on my would-be novels and comics? Yeah, I think that'll help...it just requires me to discipline myself and gather whatever source of motivation there is within myself. It kind of worked last year, until I hit Artist's Block...

Anyway, I'm not sure how I feel about my appointment tomorrow...I mean, just what can the doctor do? The specialist that diagnosed me, in retrospect, did a crappy job. All he had to say was that I should "Prepare for the future," and ushered us out the door, without so much as providing us with reading material on how to deal with the inevitable or information on support groups. I guess I'm pretty angry about this, I mean, he practically threw me into the deep end and left me alone to learn how to float. So far I've been doing okay, I think...but then, I wouldn't know. I might feel like I'm doing fine, but someone else may think I'm not. It's true that I don't talk about my feelings on the matter; it's mainly because I don't want to come off like someone hunting for sympathy. I don't want to be one of those people that sits on their ass crying about their lot in life and how useless it all is - sometimes I feel that way, but then I shake myself out of it. That's not who I am, and it's not who I want to be. I want to be proud of my life and to not have any regrets.

Another reason why I don't talk about it is, because I don't want anyone to worry...especially my mother. Her health isn't the best, and she has more than enough things to worry about - she doesn't need me whining about my situation. But then, I also understand that while for me it feels like I'm being strong, my silence on the issue may worry her because she has no idea how I'm coping and whether my answers are honest or not when she does pluck up the courage to broach the topic.

More than anything though, when it comes to my mother, I don't want her to feel helpless or start blaming herself. My condition isn't anyone's fault...it just happens to be what happened. There was no way for anyone to know that this was going to happen, especially since no-one's ever been diagnosed with this in our family before. I wish I had some magic phrase that could make her feel better and know that this is something that I will never complain about. I might curse it and there will be times where I just want to self-destruct, but ultimately...I don't blame anyone for it and it's just one of those things I'll have to adapt to and deal with at some point.

Going back to the topic of support groups - I don't know if that's something I'd consider joining. If I were to, it's not sympathy I'm looking for or a self-esteem boost...what I do want is some life experience; someone who's going through this to share with me their views and experiences and how they dealt with it. I say this because, I joined a support group on FaceBook and frankly...while the people are nice, I don't feel like they're helping all that much. I wrote about that incident with the police woman and all I got were floods of sympathy and pats on the backs, but nothing to actually help me deal with it for the future.

We'll see how tomorrow goes...I'll definitely be writing about it.

Vulnerable ≠ Weak

I'm in two minds about putting this up, mainly because it's a bit too personal and too 'bare-all' for my liking. However, as this is a blog to house my experiences, from the mundane to the not-so-mundane, I suppose I should really put it up in the hopes that someone out there who feels the same as I do, won't feel quite as alone as I do. So, I guess without further ado, in the hopes that you will find comfort...here goes...

I don't really cry...not in public anyway, but something happened on my way home that just made me realise just how vulnerable I can be and I began to feel emotional on the bus home from my weekly volunteering at the Shooting Star Fundraising Office. No, I didn't give into the temptation of letting the floodgates open - I would never have been able to live with myself if I did - but what made me feel so broken, was the simple act of tripping on a kerb I didn't see in time because I was too busy walking to avoid a car pulling out and adjusting my torch.

It's silly, I know, but I've been encountering events that have chipped away at my confidence to function at night/low-light while my eyes are still working okay. I mean, I've tripped up in the past and I've usually chalked it up to clumsiness, but now that I know there's something wrong with me...I just wonder if the signs have been there all along. However, nearly a month ago now, I fell off the bus because I couldn't see the gap between it and the kerb, and hurt my foot in the process by landing on it quite badly...I don't think I broke anything, but it aches a little now and again. I didn't quite realise what had happened and sort of sat there in a daze, when a woman who had seen me fall lifted me up to my feet and continued on with her family as I limped to the nearby bus shelter.

The event was followed a few weeks later by missing the last step on the second-to-last flight of stairs. I had attended a meeting with my boss at a heritage site - Ham House - and I understand that they don't use lights in case of damage, but unfortunately the natural light didn't help much. I landed on my other foot this time, but luckily it didn't hurt as much. The incident with the kerb happened a week later, and it dawned on me as I sat on the bus home, that I'll never be able to function efficiently at all soon. Sure, there's treatments in development, but I'm not really all too keen in having cybernetic implants that require an external power source...maybe something a little discreet perhaps? I can't believe I'm being vain about this...I guess it's the girl in me, seeing as I'm quite butch in my thought processes otherwise. Anyway, by the time I need them, therapies and treatments may have been perfected - so bright side!

Marriage Criteria

Marriage is a subject that has come up more than a few times over the years, since I turned 18, and what has caused me to bring it up now is the fact that soon my brothers and I will be the only ones in my family, who have hit and passed 'Marriageable Age', who remain to get hitched. Nearly all of my cousin's who tick that box are either married to each other or some other cousin in the family, and I refuse to marry a cousin who shares my blood - some of my cousin-brothers have been candidates for me despite this tenet, though those were suggested by their parents and not my mother. My mother knows my stance on intra-family marriage, and I will not compromise the health of any future children I may be lucky enough to have.

That being said, any child I do have will be screwed anyway since there's a high likelihood that they'll inherit my condition, and so I have resolved that I will pay any amount there is to ensure my child will be free of this gene. Yes, I'm talking about Genetically Engineering my child since Retinitis Pigmentosa is currently an incurable condition, despite rather excellent recent developments in trial therapies to partially restore sight that remain to be perfected. I do remain optimistic, however, that hopefully at some point a definite cure (or as good as) will come into existence and I may not have to go down that route. I'm all for Genetic Engineering when it has benefits in the long-term, but I know that just like with Plastic Surgery, it will become commercialised and Gattaca* will be that much closer to becoming reality.

Anyway, the main point of this post is to highlight a fear that I have - do I tell any possible marriage candidates the 'small-print' included with their purchase**, or keep schtum and act as surprised and devastated as they are when the symptoms get worse? Being an honest person, I suppose I would most likely tell them at the first instance. However, the rules would be different depending on who's doing the proposing; should it be a run-of-the-mill Arranged Marriage, then I'd tell them there and then with some tactful questioning leading up to it. If it's a boyfriend, then I may be inclined to tell them a little later on...perhaps if they began to see the relationship going long-term, but then they'd have developed feelings for me so may be more inclined to stick with me for a while so as not to seem like a prick...I haven't even told the majority of my friends yet, let alone a non-existent boyfriend! See, it's a tough subject to bring up...I wish there was an easier way to do this, but I figure that since my eyes are okay for now, then there's no point and I should only bring it up in the real problem areas, like going clubbing or to the cinema or to a platonic 'dinner-date'...

There May Be Hope Yet

Not the next post I had in mind - I really should post more often/plan my posts better/make time to actually post - but I heard about this from a colleague at work and just had to share it:

Eye Implant Allows the Blind to See Again

Isn't that exciting?! I probably wouldn't have been as excited if I didn't have RP, but regardless of whether I did or didn't have it, I would definitely have been excited for those who were blind or suffering from the condition - both from an empathic position and a scientific one. I'm no scientist, but I am all for scientific advancement and breakthroughs and it's moments like these where science can be considered beautiful; it doesn't just destroy and cause pain but also brings life and joy.

The article isn't the only route for people with RP to regain their sight; an alternative is highlighted in the following:

Sight Restored to Mice Afflicted with Retinitis Pigmentosa

Looking at that title, it sounds straightforward, but it doesn't say the how...not like the first one. Also it's full of geek-speak, so I'll try and translate/summarise:

A Swiss team have been able to reactivate the cone cells of mice with RP. They have achieved this by introducing a protein via Gene Therapy, which switches the cells 'On'...

Learning to say 'Goodbye'

So watching an older episode of Ugly Betty a second time made me think a little...okay well maybe a lot. The episode was about Daniel reaching Level 7 and finally making peace within himself and saying goodbye to Molly. It was quite a moving episode, though no more so than any other episode of any given series that deals with loss and moving on with one's life.

Learning to say goodbye on an emotional level is a difficult step and perhaps one of the few lessons we learn from our grandparents, or perhaps the very last that we should ideally learn from our parents. Of course life never goes so smoothly nor runs the same course for everyone, no matter how much we'd like to believe otherwise.

Go! Pikachu-!...rin?

I remember reading about this some years ago, only back then I think the article was poking fun at the name. I mean, come on...Pikachurin? This is the article in question, though I'm pretty sure I read it on a more credible source like BBC News or the Independent, seeing as I don't really troll GamerTell.com. For your convenience, the following is a Wiki link on the protein.

I understand why it's called as such, but seriously? That's the best they could come up with? It's a protein that's been around since time immemorial, surely it's more deserving of a more dignified name.

What brought this to my attention however, was reading up on what I have. Apparently in 2008, when the protein was discovered, the scientists on the team believe it could lead to the development of treatments for various ocular conditions, including RP.

Needless to say, if they are successful, I will be fighting to keep a straight face when I pop those pills, though I do have more hope for Gene Therapy/Stem Cells/Transplants.

Here are some other examples of oddly named proteins and whatnot in the body:

• Sonic Hedgehog Homolog
• Robotnikinin
• 7btb7/Pokemon

P.S. I don't mean to be snarky, but I do agree with the sentiment that if something's wrong with me and there is only one cure, I would appreciate it, in either case, not being named after something stemming from pop culture...unless it was Hadoken. No, seriously.