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…***

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What people don’t know about being a Dr’s Patient

Sunday, July 12, 2015

 

You might not realize this, but being a Dr’s patient means that we have to provide them with enough information in order to be diagnosed, treated, or even heard. We’re essentially consumers, and they’re providers of services and goods… all be it, medical treatments and medications (if needed – and the correct ones!)

It could be compared to joining a dating site but not filling out all of the vital information in which to find a proper date.

You cannot go in to your Dr and simply say, “I can’t sleep, have no appetite, and get dizzy.” You have to give them parameters in which to gauge not only what is causing it, but when it is happening, how often, under what circumstances, and then judge by their medical knowledge ALL of the many things that it could be related to – way before diagnosing you or ordering the correct tests for what you’re going through in order to even start any sort of treatment plan.

“I can’t sleep” could mean many things. It could mean you’re having trouble falling asleep or staying asleep. It could mean you have insomnia. It could mean you have restless legs syndrome or neurological distress like ‘anxiety’, ‘panic attacks’, adrenal issues, etc.

“I have no appetite” could mean many things. It could mean that you’re more often than not, not hungry. It could mean your taste pallet has been altered and you no longer like the foods you’re used to eating. I could mean that you’re having intestinal or stomach pain or constipation.

“I get dizzy” could many many things too. It could mean that you’re having vision issues, ear – nose – or throat inflammation, or even neck bone or shoulder muscle pains/swelling. It could also mean you’re having vertigo – which is not exactly the same as dizziness.

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Many traumatic brain injury survivors (as well as post-concussion survivors) have many similar symptoms but cannot accurately describe when/why/how often/ or what is causing them. It is impossible for our Dr’s to know exactly what’s going on with very vague information that we can give them.

With amnesia (or any other memory loss issues) it is VERY hard to keep track of even the most minor to major issues we keep having medically. Even more so, it is harder to accurately describe how our lives have altered due to the medical, emotional, and day-to-day changes we’ve experienced and are still going through.

In short, our medical healthcare providers can ONLY do their jobs with as much information from us patients as possible. This is true for medical care, psychology, psychiatry, physical rehab, and so many other forms of the medical fields we utilize to improve our overall health and wellness (aka: our quality of living life.)

I’m working really hard – even with amnesia and post-TBI issues – to create booklets for us patients to use in conjunction with our healthcare providers and care-givers/loved ones. These booklets include daily “charts” in which us patients can fill out in real time (as things are happening) and then share them with our Dr’s, nurse practitioners, and care-givers in order to have a complete and accurate account of what we’re living day-to-day. You know, the things that are impossible for our Dr’s to witness themselves.

Without this vital information, it is not possible for our Dr’s to create an accurate diagnosis – which means we won’t get the treatment plans we need in order to improve our lives, take back control of our health, and to move forward into managing our daily lives while improving.

My biggest challenge with my Dr’s has been lack of ability to give them clear information. By the time I get to see my family care Dr, I’ve lost recollection of what I needed to convey to him. From that, I’m not getting the right diagnosis or treatments in order to improve my daily-life situation and the issues involved that he could and would help me with. Slowly, over the last (almost) two years, I’ve finally been able to give him enough information that he’s now able to run the right tests, refer me to the right specialists, and truly knows how much my daily-life has been altered due to the symptoms I’m dealing with all the time… and how they revolve and change.

I fear, that if I cannot provide this booklet to other patients going through the very same things I’m going through, none of us will see improvements, hope for a better and more manageable daily life, or any sort of productive changes.

I didn’t get a manual with my head injury or amnesia. I didn’t get any real or valid advice on how to get better. With this booklet, patients like me can have an actual fighting chance at improving their lives. I cannot drive anymore, hold down a regular/typical job, nor can I find “work at home” that is legitimate or fruitful.

MANY patients are NOT lucky/blessed enough to have generous parents whom are able to not only house them, but feed them and take them to appointments and encourage them to keep moving forward.

MANY patients get stuck, get worse, and never return to any state of healthy normalcy.

I refuse to sit idly by and watch this continue to happen to people who never asked for these injuries or side-effects (life-long effects in most cases) and do nothing about it when I have such a great idea of how to help them to help themselves.

Please, if ever you could open your minds to something you’re not living through, open your minds to this. People living with brain injuries and amnesia cannot control what they’re going through on their own. They cannot improve their situations without guidance and long-term help. This booklet can open the floodgate of honest-to-goodness life-changing help that they desperately need, deserve, and would fight for themselves if they were truly able to.

Thanks for reading… until next blog.

What most people don’t know about being a good patient – and how it hurts them…

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:

Poem: “What’s This?”

Tuesday, November 25, 2014

A poem titled What’s This?

“What’s This?” By, Tara Davidson…

There are almost a thousand scars on this body of mine,
I know not how they got there…
There are hundreds of aches from injuries,
I know not how they occurred…
There are millions of ideas and notions,
I know not what to do with them…
There are so many deep emotions,
I know not how to express them…
There are so many unanswered questions & puzzle pieces,
I know not where they fit…

There are things I’ll never know for sure,
for this I am entirely certain…
There are things I’ll have to let go of,
for this I am entirely willing…
There are things I’ll have to start to mourn,
for this I am not looking forward to…
There are losses that cannot be put into words,
for this I must assure…
There are going to be many moments of confusion,
for this I know will occur…

There are times when I’m lost and truly feel broken,
but I must continue to endure…
There are times when things will get awkward & strange,
but I must keep trying to connect…
There are times where I’ll disappoint & remind you of this loss,
but I know you forgive & attempt once more…
There are times that there’s no excitement or vigor,
but you remember there was before…
There are things that I cannot regrow or replace,
but I miss me as much as you do…

Sometimes things aren’t fair, don’t feel logical, and rip at our core,
yet we move on and grow up & try to look forwards…
Sometimes what we hope for doesn’t happen,
yet we must strive to survive until we figure out the why’s…
Sometimes our paths are bombed and broken,
yet we rise through our rubble and retie our dusty boots…
Sometimes this life is sad and painful – tragic for some – life-altering for others,
yet we all feel the same losses, shames, and pains…
Sometimes shattered lives turn into beautiful mosaics,
yet we fail to see the beauty of being broken & reassembled.

I lose myself every few weeks and what isn’t lost is the me that’s always been deep inside. The me I was born as. The me that the world, all of the experiences I’ve had, the circumstances I’ve been in, nor brain injuries I have, can alter.

No matter how scary or confusing my world gets from time to time, I must never forget that my life-essence (or soul/energy) cannot be erased like my memories have been. Nothing can take my true self out of my nature. Nothing can alter the fabric of my being except for death.

I may be a different version of me – but I’m still me, and I’m still here, and I’m still trying my best to surpass what I’ve been through, am going through, or ever will go through, will grace and dignity. Not falseness or ego, but truly with grace and dignity for not only the me that was erased, but for the me that I still am.

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.

What amnesiacs (may) go through day-to-day

Thursday, October 16, 2014

What amnesiacs (may) go through day-to-day

Here’s a crude run-down of just a ‘few’ of the things those with memory loss issues go through:

*Agitation/Frustration:

We can be easily frustrated because we wish to be more productive and to remember more and do better. We notice when we’re not quite “measuring up” to those around us. It makes us feel so frustrated sometimes that the agitation usually looks like anger from the outside.

*Un-comfort-ability:

We can tell in the faces and attitudes of others when we’ve forgotten something – even the most simple of things can cause others to react with the same agitation/frustration that we have when we’re not measuring up. It causes that ‘awkward & uncomfy’ feeling that can linger.

*Overwhelmed:

Not being able to keep track of the things we know are important and value tends to be quite overwhelming and overbearing at times. There’s nothing more we want than to remember more and do better. When we don’t, or when we try and cannot, it sends a bit of panic and shock through us.

*Helplessness:

Sometimes that panic and shock of the inability to form lasting or long-term memories can make us feel lost, lonely, helpless, and hopeless. Remembering things is the key to productivity. If we cannot remember things properly, we know and feel that something is “missing” or “unfinished”. At times it can be a bit daunting in the emotional-arena.

*Lost:

At times, when we’re at a loss for words, thoughts, memories, or solutions, we feel lost. I know when I feel lost it is usually because I’ve completely forgotten what I was doing, how important it may (or may not) have been, or that something I held in my memory bank suddenly vanishes.

*Confusion:

Many times when there’s missing memories, whether long- or short-term, it causes an avalanche in our minds. If we cannot piece together something that makes sense, the end-result is usually confusion (mixed with a few or all of the previous emotions/feelings.)

*Anger:

There’s nothing more infuriating than being on-path and then suddenly being derailed in mid-thought/mid-action. Let’s say you were writing a very important note and in mid-sentence you completely lost your train of thought and were sitting there perplexed. After numerous times of this (or the importance level of it,) the eventual result (and easiest emotion to feel) is anger. Sometimes, it pops out no matter how demure or strong our self-control is. Sometimes we just have to express it. (Sorry y’all )

*Dismay:

Feeling lost, confused, and overwhelmed can cause the feeling of being dismayed. It’s a bit of mental shock, in my opinion. Sometimes, it just captures us and holds us in a state of shut-off. When things get too confusing or too “heavy” we are just stuck (even if only for a mere moment or so) it can feel like an eternity. Kind of like being 4 years old in the grocery store and suddenly your parent(s) are gone and you have a good cry because you have no clue what to do or how to find them.

That’s just a ‘few’ of the things people who have memory-loss issues can feel at any given moment, of any day/night. Sometimes, (I’m not ashamed to admit this) I get “lost” on my way to use the restroom or get a glass of water… it can happen at any time.

(Thank GOODNESS I have a loving family who love and guide me whenever it’s needed.)

Until next blog -Tara-

Fickle Memory

 I watched a movie a year ago that no fraction of which rings any bells for me.

This tends to happen with me over and over again. I’ll have done, said, listened to, or watched something that I’ll have zero memory of.

This is memory loss… at it’s cutest and less-vile.
In truth, memory loss can be quite frustrating for the most part, but also VERY scary.
Knowing you’ve done something but having NO recollection of it is intensely troubling.

I can imagine how people with Alzheimer’s feel – in a state of constant rotation of memories – not knowing what’s happening now or in the past, but it all feeling present. I’ve had lapses where I thought something that occurred two years ago was current reality – but after snapping back to ‘now’ I felt as though I’d gone insane.

Having no control of past, present, or recent history in my own mind. MY mind.
The thing I rely on to hold my memories near and dear, and accessible whenever I want them – but I cannot.

That feeling of not being in control is infuriating and fear-filled. Sure, some parts of memory loss are totally hilarious, but most of it is a nightmare. A waking nightmare.

I won’t lie, I DO laugh at myself quite often. I try to make light of the seriousness of how horrible memory loss/amnesia really is. I attempt to see my reality as a painful but funny life-long joke. A series of comedies and tragedies aligned as what is my life now.

Seeing the bad and the good is my way of coping with this life of mine.

I guess the moral here is – no matter what’s going on, and no matter how painful it gets, find ‘the funny’… find the joy, the jokes, and the lighter side of a bad situation. 🙂