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Request for personal support from the community

mashedtatersmashedtaters Member Posts: 1,768
Hello everyone, this is kind of difficult for me to announce because I tend to be mum in regards to personal affairs, but I got permission from @JuliusBorisov to proceed so here goes nothing.

I have a rare genetic disorder known as Erythropoietic Protoporphyria (EPP for short). This condition prevents me from exposing myself to sunlight. I believe that I have dealt with it fairly well so far in my life, despite the fact that it is very physically challenging, emotionally depressing, mentally draining, and socially isolating.

The reason I am bringing this up is because I started a blog about living with this condition in order to raise social awareness a few weeks ago. This is the only online community that I have ever become involved with seriously (I'm not even on facebook), and I would like to ask your support. I know that other people here in the community have physical, emotional, mental, and social struggles; some of those people have reached out for support and help as well. I also am aware that some people here in the community are "normal" and just love Baldur's Gate.

I hadn't intended to mention this blog to anyone here when I first started it because I have been in a sort of mental funk lately and kind of withdrew from the community when my computer crashed and I lost my BG files (I still have a windows XP computer and can't download the games because of missing software updates due to a lack microsoft technical support). I was still checking in without posting occasionally, until @Skatan posted on my wall shortly after I started the blog. I was touched by someone thinking of my mashedtaters, so I got a little more involved again.

I guess I am looking to see what you guys think, to ask for some feedback questions to answer on the blog (although I have a lot already from everyday life), and mainly to ask for you to spread the word about this condition to people you know and to your online communities, hopefully by linking it to your other forms of social media if you feel it is worthy. Due to its rarity there is little to no awareness about this condition, and ignorance brings some of the worst of humanity's traits into the spotlight. I hope to reduce some of that ignorance with understanding, and thus reduce some the harshness of human behavior with empathy.

I have a goal to post on the blog every one to two weeks. Again, the blog is https://eppalive.wordpress.com . Come check it out and see what you think.

And a special thanks to all the undead, drow, and other evil minions out there who can't be in sunlight. Without them, I wouldn't even have a place in the realms.

JuliusBorisovSkatanmf2112BelgarathMTHmlneveseelminsterlefreutsarevok57NimrangorgonzolaMush_MushRavenslightThacoBelldunbarsemiticgodAasimAyiekielolienbrusRelSundanAerakarGodPteranNonnahswriterCrevsDaaksparkleavGenderNihilismGirdleartificial_sunlightBlackravenGrammarsaladStummvonBordwehr
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Comments

  • gorgonzolagorgonzola Member Posts: 1,703
    As I don't participate at any social media or other forum I can not help you in spreading he word about your condition, but you can count me in, I will follow your blog and help you in any way I can, you deserve it as fellow human being and fellow player of the bg series.

    JuliusBorisovmashedtatersRavenslight
  • TStaelTStael Member Posts: 861
    I am glad you have your voice here mashedtaters - hope got that right, and scrolled up n down about five times, in view u have no mercy about your monikers lol! :-) Mean anything that?

    Your condition is very rare to me: I do not know anyone personally, and I could not even imagine how many would be impacted in Finland.

    That I can check, clinically. But I think it would be better to admit that I have a vague idea of your condition, which is that you must stay inside all the time.

    I sort of took your OP as a way to lay out our preconceived ideas, and to maybe know better.


    So to understand EPP on human level: to which extent avoiding sunlight is hinderance to the everyday life? Which specific measures would you, for instance, have to take on a sunny day?

    mashedtatersJuliusBorisovRavenslight
  • GodGod Member Posts: 1,115

    I believe that I have dealt with it fairly well so far in my life, despite the fact that it is very physically challenging, emotionally depressing, mentally draining, and socially isolating.

    As it happens, humans were once a species of beautiful nightly creatures, living in respectful synergy with nature, actively scavenging superior nutrients which other animals dared not risk to obtain. Alas, then came the temptation of idle comfort that gave birth to agriculture. With its advent, humankind devised the concept of TRUTH, and many awful calamities followed from it.
    I'm proud you were able to outsmart this hostile society and find well-deserved love, in spite of a civilizational environment hell-bent on alienating you because of your unique traits. Resilient and industrious specimen such as yourself prove to me that there may yet be hope for humankind to survive.

    And a special thanks to all the undead, drow, and other evil minions out there who can't be in sunlight. Without them, I wouldn't even have a place in the realms.

    If you haven't already, you may want to watch Jim Jarmusch's Only Lovers Left Alive with your other half on a quiet day. It's a somewhat depressing motion picture, but I nonetheless find it to be greatly empowering in more ways than one.
    Perhaps you will as well.

    mashedtatersgorgonzolaJuliusBorisovRavenslight
  • TStaelTStael Member Posts: 861
    Thx & look fwd mashedtaters - and boldly and courageously blog away, and pray let me know! :smile:

    People whom are introverted, or shy or not comfortable writing, or maybe too poor to have access to modern infrastructure - the human challenges are the same, but the threshold to vocalize very high.

    One must be thankful to those whom have the access as well as strenght, writing skills and also inclination to share.

    RavenslightmashedtatersJuliusBorisov
  • mashedtatersmashedtaters Member Posts: 1,768
    edited October 2016
    @TStael
    Just wanted to let you know, I updated my blog with a several posts that I hope sort of answers this question of yours:
    TStael said:


    Which specific measures would you, for instance, have to take on a sunny day?

    My last, most recent post, was to convoluted so I deleted it and replaced it with a similar post that has links to more details about the clothing I use to protect myself from the sun. The link is below.

    @gorgonzola @Ravenslight
    I tagged both of you because you both seemed to me to have specifically expressed your curiosity about this: there is a photo of me dressed up in my sun-protective gear at the bottom of this blog post


    The address of that post is https://eppalive.wordpress.com/2016/10/21/method-of-sun-protection-epp-clothing/

    As I mentioned, there are also links to information about each specific item of clothing I wear, except for one item. I will get to that when I have time, I have been trying for the past three days to get it all done but I ran out of time and will have to edit my posts to include the link when I write the post later.

    Thanks again everyone for your support.

    @God
    I haven't seen that movie, but I love movies so I will have to check it out. Thanks for the tip.

    JuliusBorisovRavenslightgorgonzolaTStael
  • TStaelTStael Member Posts: 861
    Thx for the link - the pic of you in full gear is pretty arresting, in view that I tend to much more readily suffer from heat than cold.

    I read not too far back an article about a Finnish woman whom had become severly over-sensitive to chemicals from mold exposure, and therefore wore a doctor's mask because she perceived it to help with her symptoms. She had wanted to be interviewed as she was frustrated that her young daughter got outright comments even from adults.

    The dilemma of just looking atypical was / is probably heightened by the fact that a covered face is perceived as theatening, unless it is expected (such as skiing in cold temperatures, dentist in work etc). I am sure I have this response as well, and it is not consciously or intentionally malicious.

    mashedtatersJuliusBorisovgorgonzolaRavenslight
  • PteranPteran Member Posts: 388
    I work in a pharmacy and just last Friday I had a guy come in with some form of porphyria! Doesn't sound like his condition is nearly as severe as your own, but that's a crazy coincidence.

    Keep on keeping on good sir!

    mashedtatersJuliusBorisovgorgonzolaRavenslight
  • mashedtatersmashedtaters Member Posts: 1,768
    TStael said:

    Thx for the link - the pic of you in full gear is pretty arresting, in view that I tend to much more readily suffer from heat than cold.

    I read not too far back an article about a Finnish woman whom had become severly over-sensitive to chemicals from mold exposure, and therefore wore a doctor's mask because she perceived it to help with her symptoms. She had wanted to be interviewed as she was frustrated that her young daughter got outright comments even from adults.

    The dilemma of just looking atypical was / is probably heightened by the fact that a covered face is perceived as theatening, unless it is expected (such as skiing in cold temperatures, dentist in work etc). I am sure I have this response as well, and it is not consciously or intentionally malicious.

    I know that some confrontations are not meant with malice, they simply believe they are doing the right thing in ignorance. That's one of the reasons I decided to do this, is to help reduce ignorance, and thus reduce fear when I am seen in public. Hopefully, by reducing fear by instilling knowledge, I can reduce some of the frequency and repetition of negative encounters. However, the majority of negative public encounters are not out of fear, but are simply intolerance of someone who looks different; these are often the same people, I would imagine, who would point and laugh at down syndrome kids in school before it wasn't cool anymore. For me (when I get the courage), sometimes explanations change someone's treatment for the better, and sometimes it increases in intensity.

    @Pteran
    Really? Wow! Awareness increase, +1!

    JuliusBorisovgorgonzolaTStaelRavenslight
  • TStaelTStael Member Posts: 861
    @mashedtaters - it is maybe an unfair question, but please tell me if you can:

    - bollocking set aside, where I most certainly hope I'd decend solidarity upon solidarity to shame your attacker, but would hope to have my even more righteous and bold pal to help me be my ideals -

    From your perspective, is it better to accost and ask, or be descreet and avoid? I am inclined to the latter, naturally, but this also means you'd never be able to make friends with likes of me.

    Not that I should be specifically made friends with, but all those others!

    Ravenslight
  • TStaelTStael Member Posts: 861
    Thx, and just bump up with a link when you are ready!

    The reason I thought I may be unfair in asking is that I could not tell how to approch me positively, as me, Scandi introvert/extrovert whom would certainly want to be left alone in public space, but just "me" otherwise.

    Familiar, lol?

    Yet had I something to catch the eye, I think I'd prerfer to be asked...

    But you tell more, I look fwd!

    mashedtatersRavenslightgorgonzola
  • mashedtatersmashedtaters Member Posts: 1,768
    Don't be self conscious about asking me any questions. I welcome them openly; in fact, it is why I started this thread.
    I just want to be true to myself when answering in the best way I can, rather than give an impulsive answer one way or the other that may or may not be always what is truly in my heart.
    It is kind of a difficult situation to explain. That's why I'm weighing how to best answer.
    By the way, I love the challenge.

    TStaelRavenslightgorgonzola
  • TStaelTStael Member Posts: 861
    Hum, I think I get it. I must admit I found your first edition about your gear sort of spiteful, which I understand - as sort of an introvert, semi even, the idea of being constantly observed was pretty intolerable to me!

    But your second edition had all of it, even if I am still sorry you probably are constantly observed or looked at: I thought it was gracious indeed, IMO!

    To throw bit of fenno-chauvinistic challenge: ultima thule, or beyond the arctic circle would seem ideal for you, winter time. But also: light upon snow is amazingly luminous.

    Have you ever thought of Lappland for winter, in fantasy even?

    mashedtatersgorgonzola
  • mashedtatersmashedtaters Member Posts: 1,768
    @TStael

    Hey, I have decided to try to answer your question(s) in multiple posts. The first one is here.

    https://eppalive.wordpress.com/2016/11/03/questions-questions/

    My answer is not yet complete, but the rest of it will have to wait until later.

    As far as Lappland, I lived in Alaska for two years, which is on a similar latitude. I don't know how Alaska and Lappland compare for weather, but Alaska's summer (constant sun) was too much for me. The winter, also, was difficult because of the sun being low on the horizon and reflecting off the snow so easily.

    Beautiful place, though. I have often thought about moving to Juneau, Alaska, because it is very cloudy and warm there.

    Also thanks for the feedback, I am open to it. I was a little unclear, do you still find the blog spiteful? That is not what I intend for it to be.

    My goal is to go for a little bit of dry humor while still accurately explaining my perceptions and experiences, which, sadly, have sometimes been negative. I do not want to come across as bitter or hateful at all, because I am not.

    JuliusBorisovsemiticgodTStaelRavenslight
  • chimaerachimaera Member Posts: 676
    edited November 2016
    I have to second Ravenslight: the layout is beautiful and loads quickly. (which is something I really appreciate with my slow net connection ;-) )

    If possible, I'd suggest putting the links to your tags in one place, for example under the follow button, so that readers can look up any topic quickly. Having tags only under each post is a bit inconvenient.

    Another idea to consider is twitter; less personal than facebook, but great to spread the word around. I've seen a lot of bloggers who use twitter just to advertise their blog and to notify the readers (most of whom aren't bloggers, but have twitter) whenever a new post is up. Unless there is a way to follow your blog without subscribing to wordpress?

    mashedtatersgorgonzolaTStaelRavenslight
  • mashedtatersmashedtaters Member Posts: 1,768
    @chimaera
    You don't have to sign up with Wordpress to follow. Just click on the follow button and sign up with your email. I have a few non-Wordpress users following me.
    Great idea about the tags. I hadn't actually considered using them for that purpose. Looks like I'll be doing some reformatting soon.
    I don't have a Twitter account, maybe I will sign up. I did include Twitter share buttons, as well as Pinterest, on the blog.
    Thanks for the feedback, I really appreciate it.

    Ravenslight
  • chimaerachimaera Member Posts: 676
    edited November 2016
    I didn't know that about wordpress, for some reason I was convinced a blog subscription is necessary, thanks for clarifying!

    PS Twitter was just an idea, don't feel pressured into it! But consider moving those share on twitter/fb links from the bottom of the blog (I don't mean those at the end of each post, but those at the end of the page) to the top, because they don't display for me unless I scroll completely down.

    mashedtatersRavenslight
  • TStaelTStael Member Posts: 861
    edited November 2016

    @TStael

    Hey, I have decided to try to answer your question(s) in multiple posts. The first one is here.

    My answer is not yet complete, but the rest of it will have to wait until later.

    As far as Lappland, I lived in Alaska for two years, which is on a similar latitude. I don't know how Alaska and Lappland compare for weather, but Alaska's summer (constant sun) was too much for me. The winter, also, was difficult because of the sun being low on the horizon and reflecting off the snow so easily.

    On your first link, need to digest that first, but will get to the second one - I am just horrified "friends" would violate you, but those would not be real and true friends obviously.

    I've been bullied rather cruelly for no other reason but for being socially underpriviledged, and having a firm of my opinions - which ment isolation in absence of "friends" because it has been always necessary for me to have true ones.


    This is pretty personal, I think, deriving from my isolation: did you choose to have those "friends" because it was hard to have true ones - with your illness? (BTW: I think it is just really lucky to have ones true and rare, and it is both more likely and somewhat harder with age)


    If I had my bold mojo, I wish I asked: "I must admit I feel a little uncomfy or unsettled by your gear - may i ask why you wear it?"

    And there you answered, thx!


    PS. I get the Alaska point, except I have a total love of how luminous deep winter can be, coz snow reflects, and I am totally enamoured with Lapland myself. The deep winter reflection is real, too, on the flip side...


    Edit: replaced "disability" with "illness" - to be more neutral, which I hope the OP will just laugh upon! Because I frankly think from illness comes forth a social disability, but wish not presume. But never promised a bold mojo, eh! :smile:

    mashedtatersRavenslight
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