Ataxia, the slow, silent destruction

Wednesday, August 26, 2015

Ataxia, the slow and silent destruction

Fact- Some things will never get easier, but that doesn’t mean that it has to rule my emotions and how I take on each day as it comes with its own set of difficulties.

This morning, I spilled an entire glass of cappuccino all over my wireless keyboard *which was a gift from my Mom and Dad after doing the same thing on my laptop – which amazingly didn’t ruin the entire machine!*…

I was SO upset that I could have actually punched my desk… but I didn’t.

It doesn’t seem like that big of an accident to most folks, but to me it was yet another frustrating reminder that I do in fact have ‪ataxia‬ and that it is affecting my hands and how well I can grip objects.

I live through my hands – as an ‪artist‬, ‪photographer‬ and tactile enthusiast.

Most of us take for granted how often and for what purposes we use our hands all day, every day. For me, it’s a grim reminder that these ataxia ‪‎symptoms‬ will continue to decrease my abilities and that it will continue to increase the limitations that I’m already unwilling to accept.

For those of you whom don’t know me very well or haven’t known me very long – I’m an EXTREMELY patient human being. I don’t mind waiting, and in fact, I find that slow anticipation is often very well worth it in the end. However, I get REALLY angst-ridden by things that limit my abilities, my options, and mess with my creative outlets.

My creativity is a HUGE part of my healing process, and without being able to do all the things I enjoy doing and find healing from doing – – – I get angry. I get sad. I get disappointed and down on myself. Things I cannot control are often the hardest things to ‘deal with’ emotionally. My logic and my emotions are in an immense battle right now about this, and it’s really hard to just “be” with it, or to accept it.

I’m working on it, and there’s only ‘so much’ I can do about any of it. Logically, I know there’s only ‘so much’ I can control, and the rest I have to fight myself internally in order to just ‘accept’… it is NOT easy, but I’m using ALL of my willpower to do my best to.

In life- There’s 90% circumstance, and 10% reaction.

I have to purposely choose to react in a constructive way, otherwise I’m actively being destructive to myself about my situation and my brain damage.

Being optimistic and upbeat takes its toll, and is almost never easy when it comes to things so life-affecting. I do try my very best to keep being positive, but some days I feel like saying “eff it!” and just be angst-ridden and full of despair. I feel like sometimes I just ‘have the right’ to be angry and upset.

I don’t want to end up in a wheelchair and not able to use my hands. I don’t want this brain damage, *ataxia*, or amnesia, but it’s what I’m living with; eventually I’m going to have to just ‘be okay with myself’ and learn how to live with it.

Today isn’t exactly ‘the day’ for acceptance — but maybe one day I’ll learn how to.

I’ve already accepted SO much – that sometimes when MORE stuff comes on top of it all I just feel like breaking down and having thee most epic hissy-fit and pity-party the world has ever saw…. but – I compose myself – sometimes HOURS later – and just roll with the punches life throws at me.

Yes, it’s okay to be upset and angry about things that I’m not ready to fully embrace – but it’s NOT okay for me to beat myself up for things I have no control over. Today I’m realizing this all over again – and it’s a harsh feeling to know there’s only ‘so much’ I can actually control.

It makes me feel small, helpless, and alllllmost hopeless.

BUT – having stated that – I do know that I have to adapt to survive, and eventually I’ll figure out how to do so about all of this. So far, I’ve done a fairly good job at adapting in order to survive what I live with. So far, I should be content with the fact that I’ve done so well, and that I will likely continue to do well to adapt to whatever comes my way.

I have to give myself credit where it is due, and stop attacking myself as if I had something to do with what’s going on. I don’t.

It’s not my fault I was injured, and it’s not in my control how quickly I do or don’t heal. I just have to learn how to not be so damned upset and to truly find a way to anticipate these things. I do anticipate things changing – that’s a give in – but I never expected things to change at the pace they have been, and I think that’s where all the ‘shock’ and ‘angst’ comes into play. I think that’s why it feels extra-harsh.

Now that I realize that, I can more easily adapt and accept things as they’ve now proven to have become. Easier said than done, but I’ll get there.

I have come to embrace my anger and outbursts of disappointment and am learning quickly how to let it all go. To use it as a tool for processing what I’m going through.

It’s tough sometimes to really embrace that there’s huge things in my body that I cannot control, but I’m figuring it all out. I’m learning how to use my emotions constructively instead of allowing them to destroy me and my intentions for myself and my future. That’s why I say “I’m working on it” because it’s a constant battle of my whits and sensibility.

I know logically there’s only ‘so much’ in my control, but emotionally I feel raw almost all of the time. Being honest with myself is a huge blessing, but feeling so intensely kind of trumps my logic sometimes. It’s a balancing act that I’m learning to maneuver through.

There are very few things in my life that I won’t accept graciously, but ataxia just plain sucks… it’s one of those diseases that slowly deteriorates abilities to grasp objects, to stand up and walk without falling, to swallow without choking, etc… eventually, everyone with my type of ataxia winds up in a wheelchair, unable to use their arms & legs correctly, and have a feeding tube so we won’t choke by attempting to swallow.

It’s scary.
It’s not something I’m looking forward to.
Declining into it is something I’m trying VERY hard to fight.
That’s the truth of it. That’s the reality of it.

I am not focusing on what WILL happen, but instead on the here and now. When I DOthink about what WILL happen, I tend to freak the heck out and scare myself – – – which is destructive and not healthy.

Yes, I have to accept that it eventually will occur, but I have to force myself not to borrow tomorrow’s troubles today.

***Thanks for reading! — Until next blog…***


Life Changes

Tuesday, February 3, 2015

Life Changes

I have not written in a while.
A lot has been occurring in my life.

After many months of searching for purpose, meaning, belonging, and what my talents are, I finally found my outlet in photography & editing. I’ve started a small business selling my shots, and various photo-products. Since I cannot hold an outside of the home job, one that requires me to drive, one with set hours, set days, etc, because of my injury side-effects and obvious inability to drive regularly – I decided to make my own job. Making the photo-products and opening a bank account for PayPal in order for folks to buy my stuff, took a while but is now almost done. Just a couple of steps remain before folks can start adding items to their online carts.

It took a LOT of soul-searching, disappointments, and even some total failures to bring me to where I am today.

Actually, my boyfriend of four and a half years and I just split up yesterday. I didn’t rest at all last night, and barely this morning. I’ve been feeling heavy, sad, burdened by grief, and totally in dismay that things weren’t as “good” as he let on they were. I had no clue he wasn’t “in love” with the me I am today. He’d been hoping I would magically revert into pre-amnesia Tara but I never have. He didn’t want to leave, but knows that living false-lives isn’t healthy for either of us, and I have to agree wholly.

This is a HUGE loss for me, almost as much as my initial amnesia shock had been. It’s going to take me a while to really settle my emotions about him leaving, and about feeling “inadequate” about myself and those whom care about me. This has been really harsh, hard, and has changed my perceptions on loyalty and honesty. Things could and would have been much different if he’d been honest about my changes and his feelings from the start. Maybe he was truly hoping that his emotions wouldn’t change, or that he’d somehow still be “in love” with the me I am now. I do not know.

Anyhow – I’m sure that greater things will happen, and the opportunity to sincerely put all of my time and energy into my small business venture will become a huge blessing of abundance and success.

That’s my update.
Here are my websites and Facebook links:

Physical VS Mental Memories

Thursday, October 23, 2014

Physical Verses Mental – Memories

A physical reminder are those precious “things” that we keep to prove that someone was really, physically here and a part of our lives.A memory of the mind is one of those “intangible” things that we simply hold within our thoughts.

When we lost our house, our belongings, our physical memories just a couple of weeks before my TBI accident, it ruined any chance of – at the very least – the ability to cherish those physical memories of things that after being told my life stories, I could keep and appreciate.

My memories of my mind are also gone. There is no real way for anyone to understand the complexities of reconfiguring a life you don’t even remember in entirety. There’s no depth or measure or fair comparison for me to adequately describe the ways in which it complicates, threatens, and can destroy an entire life of someone whom is still alive.

I am still physically here, but I have nothing of my past to render meaning from. There is nothing to cherish except for the primordial emotional levels in which I contemplate my life stories told to me by 2nd and 3rd parties whom all couldn’t possibly be as accurate or as fairly eloquent as my own memories could have been.

The losses I am faced with, and are still with me, cannot have the “closure” and “ending” that a fair death has. When people die, they are said goodbye to, remembered, and experienced one last time at their final resting place. I feel often times like I’m a walking empty coffin. I realize how drastically morbid and dark that would seem for someone to feel about themselves, but it’s the truth.

All of the wonderful things I conceptualize, artistically and so forth, doesn’t compare to the emptiness of amnesia and the loss of my life’s work of collecting physical memories (which are inanimate objects of little physical value/& the simple basics that any self-sufficient adult acquires) and the literal memories of everything that had gotten me to where I was in life when this all occurred.

I am an upbeat and positive, forward thinking person… but this loss is heavy, and it is made worse when each day of my life is full of physical pains that some days I cannot even handle.

Life is effen tough -dare I even say, “unfair,” but the underlying truth of it all is:
It is up to EACH of us as individuals to choose how to handle the seriously heavy and sucky things that life throws into our lives. I’m doing my very best not to just collapse under the gravity of my situation. I do my honest to goodness hardest work, every single day. I will not give up – and I’m hoping others going through sincerely rough times can muster the same willingness to thrive.

Charity – Receiving and Giving

So… I was a little down and discouraged about the amount of paint I no longer had after all that happened in my life leading up to my brian injury and guess what..?!

A friend, far far away, sent me a care package of 48 tubes of acrylic paints, brushes, a pallet, a portable desk-easel, painting knives, and a bunch of flat-board 8″x10″ canvases. How awesome is that?!

I was very, VERY, reluctant to even attempt painting after everything. I wasn’t even sure I’d know how, or worse, I was SURE it was going to end up looking like someone threw up instead of like something pretty. Turns out, I totally NAILED IT! The first painting I’d done (besides goofing around and making a human-like version of Floyd Pepper – yes, the muppet band member) actually turned out really nice.

I started going to a non-denominational church in my tiny town (the only church around here that believes more in the practice of inner-growth and living the word rather than speaking one thing but living as a hypocrite) and I’ve got really involved with them. I volunteered myself to be head of the commitee to spearhead fundraisers. Our first fundraiser is to help our church-kids be able to attend a summer camp this year. (Many of them are from troubled homes, and nobody around these parts are “well off,” much less “wealthy” by any monitary means. “Barely getting by” is much more accurate.)

So ya… I got a LITTLE BIT in over my head, but I’m doing pretty well with it all. I created an event on facebook, and have made three (working on finishing the third) paintings I’m donating for the online auction. Since I’m already used to taking photos and editing them, I’ve donated 20 of those on top of the paintings.

Luckily, two church members are donating their own paintings – two from one lady, and I’ve no clue how many the other will make and donate – and some photos from a neighbor’s farm, too.

I’m hopeful, but am keeping my expectations REALLY LOW, just in case the whole auction is a big flop. I haven’t spoken to the church’s kids at ALL about trying to raise the funds for them to go to camp, either. I’d truly hate myself if I had to tell them I couldn’t manage to do something seemingly so simple (to a child’s mind and understanding.) I’d really NOT love myself for disappointing innocent children whom are already going through too much for such young ages.

Here’s the photos and paintings I’ve done so far.

***If you want to do something miraculous for these kids, you could send donations to:
First Assembly Of God
PO Box #517
Stover, MO 65078
(With “West Chapel” written in the ‘notes’ section of a check or money order.)***

The online auction works this way:

●Starting bid amounts for MY photos are $20 each.
●Starting bid amounts for MY paintings are $25 each.
●Starting bid amounts for the larger paintings one lady donated are $45 & $55 – because they’re much larger and have frames.
●Starting bid amounts for the other donated photos will likely also be $20 each.

•People will “like” the photos or paintings they want to bid on starting on the 15th, then they’ll “comment” their bids under the photos/paintings they’re interested in.
•This will last until the end of the day on the 20th, when I’ll post a comment saying “Bid Ended” and I’ll private message the bid winner to get their info for shipping their piece of art to them.
•Once the church receives their payment for it, I’ll immediately mail out their piece of art to them.
•Everything that’s profited from the auction goes directly to the Children’s Pastor who’s in charge of handling their activities – including this camp week.

Pretty easy, right? I think so.
(I’m paying out of pocket to print off the photography & send their winning pieces to them.)

The online auction is a “Private Event” because I hit the wrong button. But, if you’re interested in bidding on things between March 15th and 20th, you can find Me On Facebook and Private Message me so I can invite you to The Online Auction Event Page. I’m not sure you can see it if you’ve not been invited. So far, my parents, my brother (who cannot afford to bid on anything) and a few friends have agreed to bid. [I’m so afraid it won’t be enough!]

I’m trying to raise $1,170.00 in order to get these kids to camp. Costs $167.00 per child. Steep, I know! But having a week to just be kids – is priceless to these little ones.

[If I could work any job, I’d be working and saving up to donate what they need on my own – without making all this extra effort. But, with my amnesia issues (horrible short term memory issues) and all my physical side effects, there’s nothing out here in the country I can do. I can’t even remember long enough to be taught anything new. So, I’m using my artistic skills to do what I can to help others. (I don’t even make money off my own art. But maybe it can help these kids!?)]

Here’s the two paintings I’ve finished so far, and the third one I’m still working on:

I’m doing my best – but I truly think I’ll only manage to make 5 paintings.

Anyhow, that’s what I’ve been up to this last week and a half.
What went on before that is going into another entry… soon.

To be wholly honest, I’m mentally, emotionally, and physically exhausted. Hopefully I can keep up all of this.

■On the 21st, first thing in the morning, I’m getting my last ten (all the bottom) teeth extracted.

…. I’ll be awake for this! ….
Two days of pain and a mouth full of blood will ensue after the extractions. Ugh. I’m just glad that the pains are almost over with. I can’t keep fighting all these infections and I’m looking forward to a bottom denture and a top partial so I’ll be able to eat again. By “eat” I mean, “eat real foods again” instead of gross, nutritionless mularky that I’ve been eating since the top five extractions. I want a BIG SALAD… mmmmm! (I’m just fortunate to BE ALIVE!!!)

On a lighter note – I’m really glad I can use my artsy skills to help others.
This makes me feel empowered and strong, instead of vulnerable and useless. It is a GREAT feeling.

Really, hopefully I’ll continue to get opportunities to push my limits and help others along the way. I’ve been feeling really “dead in the water” for far too long.

Thanks for reading! 🙂