Anxiety, Brain Injury, Depression

Triple Whammy

Dealing with depression, anxiety, and a brain injury is confusing and disheartening.

Were my lows this low, before the stroke? Did I always hate crowds this much? Did I overthink things this much? . . . or everything just a little bit worse? I don’t remember so I can’t make an accurate comparison.

I spend a lot of time scrutinizing things like, what to do with my time, who I’ll spend it with, where I’m comfortable being from moment to moment, and how I’ll get there.

I make mistakes, but they’re not as drastic or detrimental as they used to be.

I have no regrets because in each wrongful act I’ve committed, or mistake I’ve made, I’ve learned more about myself and human nature.

As humans, what we want and what’s right, don’t necessarily coincide.

On top of that sentiment, it’s all relative to who you’re surrounded by, what your beliefs are, what takes priority at the given time, what makes you tick, what resources are at your disposal, etc.

That being said, I’d like to strive to be a better person, while minimizing emotional pain across the board.

A few of my goals for this winter are to remain seizure-free and to combat my impending, debilitating depression. That means staying away from stressful, demoralizing situations.

Part of this quest for salvation is having to battle my inner demons and win. It can be done but it’s not easy and it’s a never-ending struggle.

So, after a week of serious thinking, in early December, I decided to try remain to sober.

My neurologist okayed me to have ONE alcoholic beverage per day. However, I can’t ever predict whether I can stop after one.

For instance, on a Wednesday night about a month ago, I thought, “A glass of cabernet sauvignon would pair nicely with a slice of strawberry rhubarb pie,” and it did but . . . Then, I had two more glasses of wine, only one glass of water, and forgot to take the evening dose of my anti-convulsant.

The morning after the “wine and pie fiasco,” I had a seizure.

I was treating the site where I bit down on my cheek during said seizure. It wasn’t healed after a week. This, among other things, solidified my decision to try self-restraint.

I’m really good at justifying things to myself. I never, really, considered sobriety before because I’ve never believed in abstaining from something. I believed that telling yourself, you can’t have something is just . . . cruel. But, in weighing pros and cons, at this moment, allowing myself to drink is more cruel because of the imminent domino effect.

Overall, I need to take better care of myself.

It’s been a solid month of sobriety. The more time passes, the prouder I am of myself. I’ve been treating myself the way I’ve always wanted to.

I figured, if I could just make it through the holidays, the rest would be cake.

Don’t get me wrong, I’ve wanted to drink within the past month to deal with stress, to make myself comfortably numb, to “fit in,” to not remember, etc. But, I realize that those “coping mechanisms” are temporary, counter-productive, and NOT healthy. Again, one drink would be alright, but I never can tell if I’ll stop after that one. It’s better FOR ME to cut it out completely.

It took a few weeks but, now, I feel better than I have, in a long time.

I’m more in-tune with my body. If I feel “off” I think, “Did I take my meds? Do I need food? Do I need sleep?” There’s no ignoring, or guessing, or forgetting.

For about a year or so, I was afraid to leave my apartment; afraid I’d forget my morning meds, worried I’d have a seizure or a panic attack at the gym or on the bus, stuff like that. Irrational fears, really.

I people say, I’m sharper and my speech has improved. I think it’s true. Even if it’s a placebo effect, I’ll take it!

I’ve been having weird, embarrassing dreams where I slip up and do something stupid. When I realize it’s only a dream, I feel relieved and reminded of what could be or has been and I’m like, “No, thank you.”

I’ve had more energy. I still NEED my naps and I still crap out from general fatigue, but it’s less frequent and doesn’t last as long.

 

It helps that everybody in my life has been so supportive.

They say, “Do you!”

And I say, “Hmmm . . . Okay!”

 

I don’t know. Something just feels right about 2016.

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Aphasia, Coping, Effects

Aphasia: Another Acquired Speech Impediment

“The Greek word, aphatos, literally means “speechlessness.” [http://dictionary.reference.com/browse/aphasia] What’s that word? That word that means you can’t think of the word that you’re thinking of? . . . Oh. Aphasia.” (http://www.rochesterwomanmag.com/rwm/what-doesnt-kill-me-makes-me-stronger/, What Doesn’t Kill Me Makes Me Stronger, June 2014.)

One of my new catch phrases, since I had my stroke, is “Damn Aphasia . . .” I use it when I, for the life of me, cannot think of a word I know that I, otherwise, use frequently.

Aphasia has, over time, become less of an issue than apraxia ever was. However, my brush with aphasia was no less than terrifying.

  1. What emotions come along with aphasia?

Fear, frustration, and taking pleasure in little victories.

2. How have you overcome these emotions?

When, I, first, had the stroke, I had trouble communicating at all. My uncle brought me a bell and my mom a white board, to the hospital. We made a game out of my one-armed charades. I’d ring the bell whenever someone guessed what I was trying to convey. I used the white board for anything I could try to work out; whether it be the first letter of a word or a picture of something that I forgot how to spell, etc. 

Again, “I’ve had to learn to be patient and use whatever resources I can to communicate.” (www.mariahrosesramblings.wordpress.com, Apraxia: Effects and Coping, March 14th, 2015.)

My phone has become my lifeline. Albert Einstein said, “I never commit to memory anything that can easily be looked up in a book.” (http://www.azquotes.com/quote/616898) Google and the thesaurus have become my, most-used, tools.

The thing about my experience with aphasia is, it’s become less worrisome over time. I’ve always prided myself in my grammar and vocabulary. Managing acquired aphasia means, “unlocking” what you already know is there. 

One of my speech therapists described it as such: think about your brain as a file cabinet. My stroke was like a hurricane that went through my brain. Some folders wound up in shambles on the floor, some remained in tact but needed to be gone through for memory refreshment purposes. Some things were just out of order. The information was still there but, with aphasia, I couldn’t tell which end was up and I couldn’t find the words.  

As time passed, I knew in my head, the gist of what I wanted to communicate, but I couldn’t comprehend how to get it out. I was trapped with my thoughts and I was so scared that it would be that way forever. My head can become a very dark place that I wouldn’t wish my worst enemy be confined to.

So, I worked my ass off, organizing and tidying up that file cabinet, finding comfort in every word I relearned, every grammar rule I recalled, putting everything back in it’s right place, little by little, till I restored enough to know I would be “okay” eventually.

Social Media has kept me, more or less, grounded and has given me an outlet and a chance to reach out, simultaneously. 

 

3. Were there any medications that helped?

No. “I take Keppra, an anti-convulsant, and in the first hour or so after I take it, it slows my motor functions down, noticeably.” (“Mariah Rose’s Ramblings,” Apraxia: Effects and Coping, March 14th, 2015.) It make me sluggish (more-so than I already am). 

4. How does this complication effect the people around you?

I count on people to be patient with me and, if I don’t want help and have the time, I, simply, signal for people to wait, and, most of the time, they do. 

When I get frustrated at not being able to think straight, I tend to snap. When I used to panic because of that trapped feeling, I’d fly off the handle to the point where I was scaring myself.

If I’m having more trouble communicating than usual, it’s become an indication that I need sustenance or sleep. Sometimes, this happens without warning so I have to decline invitations, more often than not, or sit down randomly or make pit-stops if I’m not prepared.

5. What would you personally want to change about your therapy? Were there any exercises or techniques that helped more than others?

Through speech therapy, I was able learn what tools worked for me and what things I could use outside of therapy to further my progress. I was always happy with my speech therapy because I never felt like I hit a plateau. There are always ways to improve. Some days are better than others. I cried a lot out of frustration and embarrassment but all my therapists helped me push on through. 

As I said, Google and the thesaurus are very useful for me. Reading “unlocks” with little effort. Listening to music and watching movies or TV shows that I knew like the back of my hand, pre-stroke, make me recall even more. 

Anything to test my memory seems like therapy; like going to the art gallery and reminiscing about my favorite artists and their lives and techniques, or getting nostalgic about my knick-knacks (Who gave it to me? Where did I, or they, get it? Why is it significant?)

Writing (as I have said, in previous blogs) helps build my vocabulary back up. I, often, repeat myself, which I think, is okay. It forces me to think of “new” ways to say similar things; break out that handy thesaurus. 

“Words with Friends” is great for getting those gears turning. There are many other games that help broaden abilities in similar ways, such “Taboo” or “Bananagrams.”   

“Words with Friends” and “Bananagrams” are both reminiscent of “Scrabble” (another excellent therapeutic game), while “Taboo” made me realize that, even in describing something in a roundabout way, I can till get my point across, as the object of the game is to make someone guess a word or person without using other key words. 

So, battling aphasia, for me, once I wasn’t afraid anymore, has gotten to be (Dare I say it?), somewhat, enjoyable. 

“When first had the stroke, I couldn’t read or speak. Any messages I responded to were courtesy of my mom.

“Texting came easier then talking (it still is) but I couldn’t find the words to say exactly what I wanted to say. I called it ‘inability to make abstract thought.’

“Now, I, suddenly, have diarrhea of the mouth, as it were, via text. I can only assume that my speech is to follow.

“Watch out, people! I’m on my way to becoming whole again!” (Facebook: Mariah Rose, March 15, 2014.)

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Apraxia, Coping, Effects

Apraxia: Effects and Coping

So, one good thing that came out of my stroke was my sister’s interest in pursuing a career in the medical field. She’s a senior in high school, studying nursing already. She’s doing a project on apraxia and asked me to be one of her sources.

“. . . it takes muscle coordination to talk or even swallow. Most stroke victims have to learn to swallow again because they simply forgot how. This ailment is called “apraxia.” The strength of the muscles is there but the brain can’t remember how to perform the task; which order the muscles need to move in.” (Mariah Rose, www.mariahrosesramblings.wordpress.com, Memory Lost, Memory Found, Repeat.)

Below are some questions I answered for Dana’s project.

1. What emotions come along with apraxia?

Frustration, confusion, feeling defeated, and taking pleasure in little victories.

2. How have you overcome these emotions?

I’ve had to learn to be patient and use whatever resources I can to communicate. For example, most people know by now about my speech ailments and that, if giving enough time, I’ll correct myself or ask for help if I WANT it. I’ve chosen to be open about whatever frustrates and confuses me and not try to hide, as much as it makes me want to duck and cover. 

3. Were there any medications that helped?

No. Actually, most hinder. I take Keppra, an anti-convulsant, and in the first hour or so after I take it, it slows my motor functions down, noticeably.

4. How does this complication effect the people around you?

I think, sometimes, people don’t understand me. When I’m frustrated, I get angry and embarrassed so I lash out. When I reach that state my condition is exasperated. The more angry and frustrated I become, the more I stutter and stumble over my words. I think, it’s gotten less frequent and severe over time but, a year and a half after my stroke, it’s still an issue.

5. What would you personally want to change about your therapy? Were there any exercises or techniques that helped more than others?

The therapy I received was immensely helpful. I wish I didn’t have to jump through hoops to get it. Even the TBI (traumatic brain injury) Waiver couldn’t keep me from getting discharged from all therapies (speech, occupational, and physical) before I was ready. So, what would I change about therapy? I want/wanted more. 

Therapy for apraxia has to do with regaining muscle memory. Exercises and techniques that are effective have do with repetition and breaking patterns once you get the hang of said patterns. It can be very confusing. 

With speech therapy my therapists broke down sounds that make up words for me and, then, we’d practice those sounds. I remember, sound blends (“fl-,” “sm-,” “sn-,” “bl-,” “pr-,” etc.), the “f” sound, and the hard “k” being some the toughest to grasp. Reading aloud helps a lot. If I know a word and am having trouble splitting it out, I’ll use my phone to bring it up (dictionary, notes, auto-correct, etc.). Seeing it in print, helps jog my memory on how to formulate the word.

Occupational and physical therapy are less complicated, I think. They still involve breaking down gross motor movement into fine motor movement and practice, practice, practice but, I think, no movement can compare with the complexity of the face’s and its attachments (speech: tongue, swallowing: throat, etc.). 

Stretching and maintaining range of motion in whatever way possible helps, generally, with movement. Exercises include anything involving, again, repetitive motion.

I find, if I mentally prepare and take my time with any therapeutic activities, I’m rather successful. When I get flustered everything gets worse; one step forward, two steps back. I’m learning, when that happens, still, to regroup, shake it off, and try again.    

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Adapt, Rebuild, Regroup

NEVER FOLD

It’s been over a month since I last blogged. I needed a break. I needed to process, to reflect on, what I was typing about.

March is Brain Injury Awareness Month so I thought it’s as good a time as any to resume writing again. I’m not gonna lie, having a brain injury sucks but it’s eye-opening too, whether your ready for the swift kick in the ass or not.

I’m reminded of a quote from a film where the main character describes the afterlife, or purgatory: “Everything’s the same [as life] here, just a little worse.” (Zia/Patrick Fugit, Wristcutters: A Love Story, 2006.) 

Life went on (business as usual) for most people, after I survived a major stroke, whereas my life, I felt, at the time, all-of-a-sudden . . . stopped. Having a traumatic brain injury, sometimes, feels like my purgatory. When things are good, I’m on cloud nine. When they seem bleak, I feel like I’ve never felt so low.

“. . . When [things are] good,

[They are] very, very good.

But when [they are] bad, [they are] horrid.”

(The Little Girl With A Curl, “The Real Mother Goose,” 1916.)

These extremes are like a roller-coaster of emotions every day. A year and a half later, I still have trouble not feeling like a burden to those who even WANT to help me. Yeah, I can’t get around as well as I used to, but, then, I think of those who are less fortunate than me. I feel like I have no right complain. I don’t have migraines or suffer from chronic pain. I get frustrated at only having the used of one hand/arm and get embarrassed because of my limp and speech impediment but I still have my wits about me. My memory loss could be a lot worse. When I get tired or lack energy, in general, I, sometimes, can’t help but feel betrayed by my body. I have a lot of resources and people who look out for me and, sometimes, I feel remorse for those in similar situations who have less that me. I’m told all that’s called, “survivor’s guilt.” (http://virginiatech.healthandperformancesolutions.net/Anniversary%20Articles/Survivor%20Guilt%20What%20Long-term%20Survivors%20Don’t%20Talk%20About.pdf, The Brain Tumor Society, 2001-2008.)

“It’s a cycle.

You’re miserable.

Then motivated.

Then bored.

Then lost.

And then miserable again.

I think I’m looking less than a year for recovery at this point.

I think it’ll go by fast.

I hope so.

I hope to look back on this year as just a hiccup in my life; to look at it as something that made me stronger and move on.”

(Facebook: Mariah Rose, January 1st, 2014)

When I realized I was coming up to the one-year anniversary of my stroke, it dawned on me that things were more serious than I thought. I was nowhere near back to my “old self.” I had tried to convince myself and others, that “I” was in this body somewhere, I just needed a chance to recover and I’d be good as new.

The truth is I have changed. However, you know what they say, “The more things change, the more they stay the same.” (Jean-Baptiste Alphonse Karr, 1808-1890.) The more I beat myself up and the more I chose to be stubborn, the more I felt guilty and like I wasn’t doing enough. I’ve always been my own worst enemy.

I tried to ease my guilt and depression by having a, sort of, party for my “Brainniversary” that turned into a fundraiser.

“I, Mariah Rose, had a stroke, almost, a year ago. Without the love and support from my friends, family, and people I’ve met along the way (even people I don’t know), I don’t know where I’d be.

“To celebrate my ‘Brainniversary,’ which is on October 5th, I’m hosting an event at  Monty’s Krown to raise funding for the Happiness House Foundation in honor of the support I’ve received.

“When choosing an organization to donate to, I looked at places that are local, not-for-profit, and that I’m not affiliated with or will work with directly in the future.

“Happiness House Foundation ‘raise[s] and generate[s] funds that will promote, support and augment the continuation of long-term services . . . for people with disabilities’ of all ages, including adults who have sustained Traumatic Brain Injuries (TBIs) like I have. The adult programs are located in Canandaigua, NY. They, also, have children’s programs there and in Geneva.”

It was an all-around success. WE raised $2700. Not bad for small-time. The high from giving and being surrounded by so much love was incomparable but, unfortunately, didn’t last long.

I’ve found that most emotions are fleeting. If you dwell on negative ones, it’s easy to spiral downward . . . so easy.

I don’t remember when, exactly, I decided to take charge of what I could and start asking questions that I was afraid to know the real answers to: the ROOT of who I really am. It hurts but I’d rather live life the hard way than to live it oblivious or naive. More importantly, I’m learning how to be content living in the now, while still working on attainable goals. That means defining what happiness is for me (because it’s all relative) and adapting my life to suit that definition. It’s all about learning about my “new self” and sticking to my guns.

It can be confusing because the line is a bit burry between my “true nature” and my new brain-injured self. I’ve been analyzing my multiple selves (past, present, brain-injured, etc.) and asking, “Would I have reacted this way before?” I keep finding (I think) that my instincts are similar, just exaggerated.

Some things I can blame on being “strokey.” Some things, I know for a fact, are just the way I am. I choose to take ownership of my blessings and curses and manage them in the way I can, doing my best. I’ve been dealt some shit hands in my life but the trick is to play those cards. NEVER FOLD. Sometimes, you lose big but you have to play to WIN.

I’ve been given a second chance. Yeah, I still grieve over the shoulda, coulda, wouldas, (I’m human after all) but through past-life experiences I can regroup and manage with support.

Now, I see my Brainniversary as my “new birthday” because it was the “death” of my past-self. When I realized what had happened to me on October 5th, 2013, it was surreal. I, even, went through the grieving process; totally textbook-like.

  • Denial, numbness, and shock: I think, at first, people around me, where more upset that I had a stroke, than I was. I didn’t grasp (as mentioned previously) how serious it was.
  • Bargaining: I still catch myself wondering what I could have done differently to prevent it from ever happening but my logical side squashes that sort of thinking because it’s of no use thinking about what could have been. It’s over. The worst part is over.
  • Depression: “I want you to think about something. I was going places. I was traveling. I was networking. I spent years honing a craft. I spent seven years working up to something only to have it taken away from me in one fell swoop. I’m okay, considering, and I promise you I’ll get back to it but I hope that you never have to know what that feels like.” (Facebook: Mariah Rose, February 5th, 2014.)

“I think I only share about 50% of the emotional roller-coaster I go through on a day-to-day basis and I’m going to keep it        that way. Sometimes, I’m sick of appearing to keep it together.” (Facebook: Mariah Rose, March 16, 2014.)

  • Anger: “I hate, hate, hate when people don’t know that I had a stroke, like, 8 months ago? I catches me off guard as much as it catches them off guard, ya know? So, feel free to throw out as much gossip as you see fit and I’ll cross bridges when I come to them because I have the balls to say something to your face if I feel so inclined.” (Facebook: Mariah Rose, May 8th, 2014.)

“Sometimes, I want to chop my right arm off with a machete.” (Facebook: Mariah Rose, May 23rd, 2014.)

“Don’t waste your energy on pity for me. I don’t want it.

“I’m not sharing my experience with you because I want you to feel sorry for me. I’ve said it before and I’m saying it again, I’m doing this because if I’m forthright with everything I’m going through, I won’t have to repeat myself as much and venting is, I think, better for my recovery than shutting down.

“And another thing, I had brain surgery, less than, a year ago. I’m not okay but I’m trying the best I can to get there. I’m not at the top of my game but I’m climbing steadily upwards.

“I’m trying.

“If you can’t handle the heat, stay out of the kitchen and get the fuck out of my way.”

(Facebook: Mariah Rose, June 13th, 2014.)

  • Acceptance: Adapt. Rebuild. I have the ability, resources, and know-how to modify what I’m discontented with myself about. That’s pretty cool. Most people don’t experience that opportunity. As unlucky as I’ve been, I’m quite lucky too. (Coping with Grief, http://www.webmd.com/mental-health/mental-health-coping-with-grief)

Although I feel like I’m coming out the other side and the roller-coaster rides are less severe, I still go through that cycle. Just three or four days ago, I journaled, simply, “I have abandonment issues. Now, leave me alone.” But, like I was saying, “most emotions are fleeting,” especially the negative ones. Just getting how I’m feeling out, instead of bottling it up or ignoring it like I used to, is cathartic. Acknowledging feelings is the way to go. It’s like ripping off a bandaid.

Looking at what makes me content moment-to-moment, again, I realize that I’m almost there.

  • Decompression time: My mental state, I’ve realized, lately, depends on this so it’s become a priority.
  • My own space: I started staying in my own apartment about a week and a half ago. It is so liberating. It was available February 1st but I was so nervous about it! It felt like when I left home for the first time for college and that didn’t go so well. That was 12 years ago. After a month of procrastination and pep-talks from my mom, head-shrinker, friends, etc. I was like, “Why didn’t I do this sooner!” . . . because baby steps.
  • Working out: My gym is only a mile away from my apartment and I treated myself to a new yoga mat for floor exercises and stretching.
  • Yoga
  • Feeling healthy (staying active, getting enough sleep, eating healthily, etc.)
  • Reading
  • Writing
  • Doing research
  • Being creative
  • Travel: I’ll plan a trip soon, methinks, now that my apartment is more like home.
  • Being around people I love, who love me back (First addressed in  mariahrosesramblings.wordpress.com, BREAK the Cypher, January 5th, 2015.)

I’ve, also, been busy sharing through social media. I want to share my recovery, people who I find inspirational, and quotes that provide hope.

Some people who have brain injuries or are chronically ill or are their own worst enemy, stuff like that, feel alone in their struggles.

YOU are not alone. I am not alone. WE ARE NOT ALONE.

By putting words and adding hindsight to photos I’ve posted through my recovery, and sharing what’s helped me throughout it, I’m further coping with my guilt, grief, and depression. I know if just person is positively affected by what I post, the world will be that much more of a better place.

Facebook: You ARE NOT Alone: Recovery

Instagram: youarenotalone138

Twitter: yernotalone138

Tumblr: youarenotalone138

Mariah Rose’s Ramblings: youarenotalone138@gmail.com

E-mail me if you want to comment on my “ramblings” but aren’t comfortable doing it publicly. I’d ask you not to abuse this gesture. I WILL NOT respond to inappropriate inquiries and I WILL NOT give out my phone number.

All these resources meant to help people, survivors and caregivers, alike.

I’m not a medical provider. I’m not a therapist of any kind. I’m just a survivor whose willing to share.

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Believe, Confidence, Identity

Chronicling and Inspiration

When I had a stroke on October 5, 2013, it affected my right side and my speech.

Over a year later, I still can’t tattoo, which is hard for me not to get angry about. I had to change my lifestyle drastically.

By making my recovery public knowledge, I’ve been able to get the support I need, while bringing awareness to others.

My dear friend, James Via, has been chronicling my recovery photographically, since the beginning.

staplesThe above picture is of me, in St. Mary’s Hospital, on October 14, 2013, after my stroke, before my staples were removed. The staples were an alternative to stitches, after I underwent a craniotomy as a result on my brain bleed.

identityIn March 2014, I went to James for help, reclaiming my identity, “normalcy,” and learning to love the things that were frustrating me but were necessary evils in order for me to recover. I did my hair and make-up that day, which was hard for me to do after my stroke, at first, as I lost the use of my right hand. In this picture I didn’t try to hide my right hand and I chose to wear my logo with pride because I still hold out hope that I’ll tattoo, again, eventually.

saeboThe Saebo device, pictured above, is to work on regaining muscle memory and strength in my right hand. It requires patience and perseverance. (www.saebo.com)

hot rod bettiesWe shot, in August ’14, for Hot Rod Betties’ “Betty of the Month.” This way we could market the store (located at 650 South Ave. in Rochester, NY) and James’ photography, killing two birds with one stone, as the dress was from the store.

On my right side, I have a subluxation in my shoulder and, again, I have little control over my hand. For the sake of the picture, whose main focus was the emulation of the dressed up pinup, I hid my right arm and gave no indication that my right leg and hip are troublesome.

I need to remember that, although I can’t get around as efficiently as I used to and I need help doing things that I used to be able to do on my own, I’m still beautiful. I, often, look for inspiration other people who, also, have had to face adversity in their lives. That way it’s easier for me to not give up and own what ails me and be proud of my body.

viktoriaOne of those people, for me, is Viktoria Modesta (image found on Google).

Viktoria, an amputee located in London, is being marketed as the “first bionic pop star” and is savvy when it comes to fashion and “power dressing.” She’s sexy and powerful. That makes me want to aim to feel that way and make me BELIEVE I could get there. (http://www.youtube.com/watch?v=2fiSAXr4UME , http://www.youtube.com/watch?v=jA8inmHhx8c)

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Blood, Hindsight, Recovery

The Perfect Storm’s Inertia Vs. The Unbalanced Force

My stroke is considered a traumatic brain injury (TBI).

On October 5, 2013, I suffered from a bleed in my brain. It was a hemorrhage in my left-frontal lobe. It affected the right side of my body, my speech, and my cognition. If you draw an imaginary line down my middle, I, literally, couldn’t feel a thing from my right side over.

My brain wasn’t acknowledging that the my right leg and arm were even a part of my body. That’s why stroke victims have a droopy side to their faces. Because, again, the side that’s affected, the brain no longer “knows” is there.

At my year check-up, my neurosurgeon said, if the bleed was two centimeters over, I wouldn’t have been able to regain any of my speech at all. He and my neurologist, both commented on how impressed they were because, normally, people who sustain the amount of trauma I have, even a year out, are hard to understand.

When I had my stroke, my neurosurgeon performed a craniotomy to remove the hematoma (clot) and relieve pressure from the resulting swelling of my brain.

My doctors were worried the stroke could have been caused by an arteriovenous malformation (AVM), meaning a collection of blood vessels that is abnormal. It was hard for them to tell, at first. But, what looked like an AVM, was made clearer over time, as the excess blood and swelling dissipated, which was shown through various scans of my brain. As in, I didn’t have one. Phew!

So, what caused this . . . thing?! Welp, I don’t know, exactly.

Here’s my theory:

Roughly, 10 years prior, my biological father was hospitalized with pneumonia. Turns out, he had a blood clot, too. He found out he has a blood disorder called, Factor V Leiden. It tends to be genetic so, both, my brother and I got tested for it. And, guess who has it . . . this guy.

In women, Factor V Leiden increases the chance abnormal clots with pregnancy or increased estrogen intake. Other contributions could include, traveling for long periods, smoking, stuff like that. If clotting is on the warning label, partake at your own risk.

I spent the next five years testing out and doing research on alternative forms of birth control. I was careful about stretching my legs out and walking around while traveling.

I think, ultimately, my stroke came down to poor treatment of my self. My heart was in the right place, but that’s not enough.

On top of the blood disorder, I was stressed about work, my personal life, you name it. I had been through an emotional wringer for the last couple of years and my schedule, at work, was more than full for the three months ending the year. I was tattooing 6 to 8 hours a day, 6 or 7 days a week. A few months before my stroke, I started going to the gym, which you’d think was a good thing, in its stress relief and exercise. But, I wasn’t sleeping or hydrating. I thought, “I’ll sleep when I’m dead.” I was drinking, at least, two triple lattes (that’s three shot of espresso each) a day and taking diet pills. I know, now, caffeine (a primary ingredient in espresso and, said, pills) is a diuretic, which causes dehydration. I was drinking alcohol, a lot, too, which contributed further to dehydration. I was smoking, less than, half a pack a day, but that’s still too much, in my now-humble opinion.

You may be thinking, “What was she thinking. Duh!” The truth is . . . I wasn’t.

You know what they say: “Hindsight is 20/20.”

In drinking, I was trying to keep up with my friends, while not having think about anything that was bothering me; just trying to live in the moment. I took diet pills because I didn’t want to stop drinking. I was smoking to take breaks at work. Idle hands, ya know? I didn’t sleep because I thought staying active was more important so I burned the candle at both ends.

Inertia, dude. Sir Isaac Newton’s first law of motion: an object at rest, tends to remain at rest, while an object in motion, remains in motion, at the same speed, in the same direction, unless acted on by an unbalanced force.

My stroke became my “unbalanced force” caused by the perfect storm. I don’t think it was just one thing, or, for that matter, two or three things. When it hit I was angry. I was convinced my life was being put on hold. Now I’m looking forward.

I have to remember that I could have, just as easily, not woken up on October 5, 2013. Everything happened the way it was supposed to.

I have to have faith that I’m destined for greater things. I still want to tattoo, again, but I need to start thinking outside of the box to do it. I knew, that even before it sunk in that I had a massive stroke, that I wouldn’t be able to tattoo for awhile. But, what I won’t do, is rush into it. My apprenticeship was rushed. Now one of the few things I have control over is when/how I will tattoo again.

I’ve made my recovery public all along for several reasons.

I still have my wits about me and I’ve made some real connections with amazing people that ask the same questions I do.

I have a new, better perspective. I THINK. I thought I thunk before but, now, I realize that I did selective thinking.

I get down sometimes because I’m in limbo. I can’t do much with my right arm still, I walk with a limp, and my speech is slow and I stammer more than your average bear but a few little birds told me that I give people hope.

With my ramblings, they’re helping me process what happened that turned my world upside-down and I’m hoping to reach others.

I’ve heard that some people who have brain injuries or are chronically ill or are their own worst enemy, stuff like that, feel alone in their struggles. Hell, at times, I feel alone too.

My point is YOU are not alone. I’m not alone. WE ARE NOT ALONE.

So, I created an e-mail address for people who want to comment on my “ramblings” but aren’t comfortable doing it publicly. I’d ask you not to abuse this gesture. I WILL NOT respond to inappropriate inquiries and I WILL NOT give out my phone number.

This e-mail address is meant to help people, survivors and caregivers, alike.

I’m not a medical provider. I’m not a therapist of any kind. I’m just a survivor whose willing to share.

youarenotalone138@gmail.com

“I kept asking Clarence why our world seemed to be collapsing and things seemed to be getting so shitty and he’d say, ‘that’s the way it goes, but don’t forget, it goes the other way too.'” — Alabama Worley, True Romance

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Learning, Memory, Stroke

Memory Lost, Memory Found, Repeat

Memory is a funny thing.

Most people I encounter with brain injuries, have sustained some form of memory loss which got me thinking.

I’m still learning about the different shapes memory loss can take. I’ll probably always be encountering diverse cases, however similar they may appear to be on the surface.

I’ve said, all throughout my stroke recovery, that I implore people not to take anything for granted. What we see as simple day to day functions to things we’ve learned through life experience, could be taken away at any moment. A lot of things that are lost have to do with memory.

For instance, it takes muscle coordination to talk or even swallow. Most stroke victims have to learn to swallow again because they simply forgot how. This ailment is called “apraxia.” The strength of the muscles is there but the brain can’t remember how to perform the task; which order the muscles need to move in. That’s why you see people with brain injuries with feeding tubes. With speech therapy there is always hope that people can relearn how to coordinate that movement.

I had one of my speech therapists teach me how to snort again. I thought, “Ya know, before I had this stroke, whenever I thought something was too hilarious, I couldn’t help but snort while laughing my ass off. I want to be able to do THAT again.”

Then, there’s learning to talk, again, in general. In this way, muscle memory is, both, a blessing and a curse. For example, I, to this day, have trouble with interchanging the words Saebo and sable. Saebo makes tools for the hand post-stroke, such as a splint to keep my right hand from “clawing” up and, a device that I call my, Robocop arm. I call that contraption my “Saebo.” It uses springs to get my hand to open up. The exercise is to grab a Nerf ball, place it in a basket, and the Saebo assists the hand in opening again . . . over and over. It strengthens the hand muscles and the idea is for the repetitive motion of opening and closing the hand, to build up muscle memory over the recommended use, which is a minimum of an hour and a half a day.

When I was first introduced to the Saebo in occupational therapy, I still had far to go in speech (I still do). I was trying to think a way to remember what this device was called. A color I frequently would use, pre-stroke, in tattooing was Eternal Ink’s “Sable”. It’s a lovely medium brown. So, even though I know the difference between the two words, my mouth wants to say one or the other, and since I’m thinking about both words at the same time, sometimes, the wrong one slips out. That happens with “like” and “love” for me, a lot, too.

Another deficit I acquired through my stroke is called “aphasia.” When I’m writing, I have to read aloud what I’m trying to say because, if I don’t, I’ll not include key words that are essential to sentence structure. I forget how to spell even the simplest of words, also.

Every time I write something, it unlocks something I “knew,” pre-stroke. When I’m editing my ramblings, I try not to repeat myself so much, so I’m trying to come up with synonyms or different phrases that I know exist but, maybe, I don’t remember them, exactly. I look those things up, if I need to, then, after I use them, file them away, so to speak.

I’ve taken to not being shy when I don’t understand what someone is saying or messaging and, if I’m trying to express myself, I’ll straight up ask, “Am I making sense?” That cuts out a lot of possible confusion.

Most of the people I’ve encountered throughout my recovery who have sustained brain injuries have short-term memory issues. Since I realized this I’ve tried to pay close attention to the way my memory has been affected, in general, and the memories of those around me, brain injured or not.

One thing is abundantly clear: the more you have to remember, the more you’ll have chances to forget something. I’ve tried to take control over that. I know that if I had a stroke any earlier in life, I wouldn’t have so many resources at my disposal. My iPhone has become my lifeline. I can edit my Google Calendar from anywhere and set reminders for doctor appointments or events. I have daily alarms to remember to take my meds twice a day. I use the Notes app to type in lists or thoughts. I use Google Maps, the RTS app, and the Greyhound, Amtrak, and MapMyWalk apps for travel and to know where I am at all times. I play games to further my neurological development.

I’ve always made a correlation between the senses and memory. Certain smells, songs, quotes, photographs, movies, textures, meals, etc. can conjure up whole messes of emotions or instances that we’ve long-since forgotten about.

Sometimes, we “remember” things the way we WANT to remember them. Sometimes, we block things, we don’t want to think about. Sometimes, we forget things that didn’t seem important at the time but turn out to be the missing puzzle piece to a fragmented thought we’re having.

I’m writing about memory because I’ve been doing a lot of thinking about what got me to this point in my life. I’ve been evaluating . . . hell, EVERYTHING; how I’ve been treated, how I’ve reacted, what I’ve suppressed, when I felt the most lost, etc. I’ve opened the floodgates to memories I forgot about and things I consciously pushed down because I thought needed to get past them to get over them. It fucking hurts. But, I’m learning about who I am, really. I’m grateful for the opportunity to make that happen.

 

. . . to be continued . . .

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