Illi-ism #5: Every Day Is Christmas Day

Welcome to December, and the “Holiday Season” of Christmas, Hanukah, Yuletide, Kwanzaa and various other religious, spiritual and cultural celebrations.

With this season comes a wonderful, worldwide sense of community spirit, kindness, giving, forgiveness, and other such positive attitudes and interactions between individuals.

Forget for a moment all the stresses, financial burdens, arguments and what-nots, and let us concentrate on that positivity. Some people may dislike Christmas, or may not celebrate it (or any of the other holidays), but even those people will surely notice the positivity that resonates from those around them.

A prime example from my own personal experience is when my then-fiancé and I had returned from outside of Thanet and it was very, very late and terribly cold, so we wanted to get a taxi. On arrival at the taxi place, however, we found that neither of us had enough cash, nor anything in our bank accounts. We were well-and-truly “skint” and would have to take the long walk home in very inhospitable weather at stupid-AM. Overhearing our distress, however, was another Thanet resident who asked us where we needed to get to and proceeded to state that she was “headed that way anyway” so we could get her taxi home with her, without any charge. “Thank you so, so much” we replied in gratitude, and were met with the statement “no, no need to thank me! It’s Christmas!”. It was a wonderful thing, but I know in my heart that this would not have happened were the month January or October, for example.

All this goodness is, indeed, good, but my thought for you today to say is… “Why only at Christmas?”. Seriously, where is all that overwhelming positivity the other three-hundred-and-sixty-four (not including “Eves”, Boxing Day, etc) days of the year?

Did you know that food banks (where spare food is donated for people who have little or no food in their cupboards), charity shops, soup kitchens (where homeless people go to eat free, freshly cooked meals) become overwhelmed with donations and volunteers in December? Yet the rest of the year, these places struggle.

Why only get the entire family together for Christmas? Why only give presents for Christmas, and Birthdays? Why not show each other your love as often as you can?

One of my “Illisms” - something I will write about on a later date – is to “treat every day like Christmas Day”, and I have decided to be literal with it this year. I have recorded a video about what I plan to do and started another Blog to write about my “adventures”. I would really appreciate it if you all watched the video and read the Blog. This is going to be a big part of my life this year, which I hope will really help to combat my depression and of course help others who are in need, as well. 

Thank you, and a “Merry-Every-Day-Of-The-Year” to you all! #365Christmases ! :-) 

Living With Sleep Paralysis

The time is 02:43 and I am not sleeping. This is not because I am not tired; I am. This is not because of insomnia; I do not suffer from that ailment. This is because of fear.

I am afraid, because in the past week I have been in four comas, all be they temporary ones. My body has spent literally entire days in a state of utter stillness, and when I finally awake, I feel weakened, stiff, ache-y, tired (ironically), dehydrated, malnourished, and depressed.

Now, unless you have been in a comatose state – temporary or long-term – you will not have an understanding as I do, and that is why this post is so important. The condition that ails me is actually called “Sleep Paralysis” and is very rare, mostly unheard of by the general public, and misunderstood by many.

- - - - 

I slept for seventeen hours yesterday. Seventeen wasted hours, that I could have spent living my life. My “record”, however, is three days. During this three day period, I was unable to move, speak nor open my eyes, but I could feel everything, including the embarrassing, humiliating, incredibly uncomfortable feeling of “relieving myself” during these hours, away from the bathroom and in my undergarment, requiring a thorough shower when I awoke…

However, this is not the worst thing that has happened to me during one of these “comas”… Unfortunately, when one is unable to move one is at one’s most vulnerable, and, unable to defend myself or at the very least say “no”, I have been through several incidents of sexual intimacy that I did not want.

One such incident was when I was sleeping beside a gentleman that I was in a relationship with at the time. He “thought that it would be nice”, that I would “enjoy it” if he removed my underwear and intimately touched me. Given how he and I had only recently got passed the point of kissing and nowhere near the point of sexual intimacy of any kind (even exterior), the fact that he did this was a big setback for us, and when I awoke I locked myself in the bathroom and cried for an hour. We did not see each other for several weeks after this, but I was able to forgive him after much apologising on his part.

Another more recent occurrence was when my date and I were travelling to London on a train to see a theatre production and I feel asleep during the journey, only to find that I could not move, speak or see. Hurrah. Not knowing this (although being aware of my sleep paralysis) was the case, the aforementioned date began kissing, nibbling and caressing my neck. When we arrived at London and he was unable to wake me, he had to telephone an ambulance and our date was cancelled.

- - - - 

I have it easy compared to my twin, however. The sleep paralysis is a “defence mechanism” that has been carried-over from her lifetime of using this body. From what I can tell, she basically decided it was easier to “zone-out”, go numb and unresponsive etc, than to fight against herattacker, Mark [Bryne]. After all, what “fun” is sexually assaulting someone if they do not struggle?.. It is shocking logic, but if you know anything about rapists, you know that it can actually oftentimes be the case. Whether it worked or not, I do not know, as I have – thankfully – little access to those memories.

Sleep paralysis I believe was also the reason why Cherie missed her “nana’s” funeral service. Was she “defending herself” against dealing with the loss, perhaps?..

I honestly have no idea what causes it with me, however. It seems utterly random, and I feel completely defenceless and I hate it. Other problems that I face, I have at least a small amount of personal control over, but with this, I do not.

It is a terrifying experience and it steals time from me. Time is so, so precious, especially for me, given how I was born into atwenty-three year-old’s body, so wasting time and having no power of it makes me very cross with myself…

- - - - 

Whether or not I will ever learn to control this, I do not know. I do know, however, that it is important to share this ailment with you all, however. If you know any one who is experiencing any thing similar, or heaven forbid you are yourself, then please, please seek the help of a medical professional. And if you encounter anyone who is sleeping but completely unresponsive to your efforts to wake them and staying utterly still, please telephone an ambulance. Thank you.

A Powerful Poem, and Gratitude To Loved Ones

It has been a very stressful time of late, and although I am doing well in some ways, I am doing poorly in others. As an example, though I am "getting out more" and making friends, Mark and Kirsty mind my medications for me as a precaution, and the past couple of days I have suffered from a case of "selective mutism", where I have an inability to speak due to a tightening of my throat when under extreme stress.

My "record" - if you can call it that - is three months without so much as a "ouch" or a meow at my cat, and no attempt to even write with pen and paper or sign language. This was an extreme case, however, due to overwhelming emotional trauma. So far this time it has been two days...

The key to recovery and the return of my voice to its active state is to relax and forget my worries. This is, of course, easier-said-than-done...

- - - - 

Jacob and kitty Scratch cuddling in
the living room on one of his visits

With this in mind, I sent Poppy pup away for a few days, and my new "bestie"* Jacob made much effort to raise my spirits but to no avail, so we decided that a day at the Noobz Gaming Lounge (where I have become a regular) might help. The original plan was actually a day trip to Brighton with my ex-fiance Robert-James**, but due to medical emergency he had to stay home.

I was very, very nervous about visiting Noobz because although I have grown very fond of the establishment, its propriator, staff and visitors, I do not know any of them particularly well and a lot of people can "freak out" about my mutism when they encounter it or get snappy with me insisting that I stop "blanking them", etc, as it is a very rare medical condition, and even rarer in adults. Now pair this with my proper nature and not wanting to make people uncomfortable...

So, to "test-the-waters", "so-to-speak", I sent Noobz a message, and it follows below, along with their lovely reply. (You can tell how nervous I was due to the lack of paragraphing and various errors!)

- - - - 

I dressed smart-casual (/"prim, proper and prudish" is the usual descript), got a taxi, went for a brief shop for a treat (***), and walked through Noobz doors with bated breath... 

There were quiet, hidden tears, frequent uncontrollable shakes, lots of amusing attempts at communicating through mime, a ridiculous amount of embarrassment... but most of all, there was love. I felt so much warmth and kindness from every person in that place, even those who did not even know my name, and I honestly cannot thank them enough for that. As I type this, I am literally having to wipe a tear of happiness so that I can see my laptop screen.

 < - - - To the left is a video that I recorded live (with a small delay between visual and audio) after my shave, where I discuss spending my Birthday alone but surrounded by strangers. I can literally see myself holding back my lonely tears... But Noobz - and new friend Jacob - took care of me and made me feel not so bad.

Noobz has actually unintentionally been there for me at my highest, and lowest points. My "Brave The Shave" was the most important, brilliant experience of my life and I spent it alone, but with the Noobz. In contrast, after I nearly died trying to end my own life, I made the decision to revisit the gaming lounge, I became a member, I made friends, and my mental, emotional and physical states began to improve. It has been a big part of my recovery.

- - - - 

Jacob, Joshua (a member of staff and now friend)
and I bought every one a huge feast!

Once again, with my mutism, Noobz are guiding me through recovery. If we fast-forward to the end of the day, I can tell you that I have uttered an occasional word and even managed a sentence-or-two, all-be-it very, very quietly... I think if I continue visits over the next few days, I might de-stress enough to regain my speech.

And, I also wrote - as the title of this post suggests - a poem. I must aforewarn you that it is a very, very powerful one, but once again, the fact that I was able to write this during my time at Noobz means that I am reaching a depth of understanding of what I went through that will, again, truly help me move onwards and upwards, post-hospitalisation. It clearly reveals some pent anger and upset towards certain individuals who were not there for me during the time the poem speaks of, and those people know who they are... (You are of course forgiven.)

- - - - 

I nearly died,
I broke inside,
You were not there. 

You broke my heart,
I fell apart,
You did not care. 

When I was breathless,
You could not care less,
It was not fair. 

I was all alone,
Heart turned to stone,
You did not even phone. 

Recovered now; moving on,
Near-death made me strong;
"So long!"

- - - - 

In conclusion, I want to extend my heart-felt thanks to Mark, Kirsty, Jacob and every single staff member and gamer at Noobz that has shown me kindness and helped me through good times and bad. When I took those pills almost two months ago, all I could think was "no one loves me" and I was "not good enough", but now I feel the very opposite.

For all my friends, I need every one of you to know how much you are appreciated. Life is precious and fleeting and you need to know that I love you all very much and you mean the world to me. You are my family. If you ever need me, I am here for you.

Oh, and if you are reading this and you live in or are "passing through" Margate, I cannot recommend a visit to Noobz highly enough. A fun place, and good people.

NB: You can watch the video of my "Brave The Shave" fundraiser that I did with Noobz back in August over on my YouTube Channel (see above), and if you are inspired, please do donate to the cause! Thank you.

* We have known each-other since my Birthday fundraiser on August 25th. We instantly clicked because we have so much in common and the same kind of difficulties with socialising, confidence, etc.
** What happened between Robert-James and I is something else that I need to "cover" on my Blog, and I shall do in due time, but all you need presently know is that we are on good terms.
*** When I am brave and go outside alone, I often treat myself as an incentive. Going into town alone, "speaking" (with miming) to strangers and being outdoors when I have no voice all deserve a big treat, I thought!