Its been awhile. The one that got away.

 I have not been posting like I used to. I've not been writing my feelings out which means I've lost a bit of myself and have in ways become uncomfortable expressing my feelings. The world around me and my own circumstances/environment have made me less trusting. I have become someone I almost don't recognize anymore, someone with a harder exterior and a less open heart. The years I've spent since my husband passed in 2016 have been lonely. The few times I've put my heart out there I've quickly pulled it back because, to be perfectly transparent, it's been a string of meaningless and empty connections for the majority, romantically speaking. Or connections i thought were stronger than they were only to find out later that I was just a passing fling. Connections that just didn't always measure up to the potential i knew existed in the world. 

 I've always believed that love and human connection combined with mutual effort can transform lives. I'm a believer in the fairy tale, the power of kindness, the ability to make or break someone's day with just a word, a smile; a genuine and loving gesture, a hand reaching out to offer help or to ask for it. True friendships are hard to come by and I often feel as if I'm putting in more effort than I'm getting back. My tribe is small, and you know who you are and what you mean to me You know this post isnt about you.

I feel as if both potential  romantic and platonic relationships have held less meaning to others as they do to me in recent years.  That the power of human connection has somehow gone down the shitter. I am afraid that I may never truly be content in my surroundings and may never be truly seen or appreciated for all I bring to the table as a friend or a partner. I know I have flaws, imperfections, peculiarities even. It takes a lot of work to figure me out. We are all complex  beings, but something has shifted in this world to make us less connected, more divided, less willing to go the extra distance to foster and maintain meaningful connections. I'm probably guilty of it too, and someone may be thinking of me in a similar light. All I can say is that I'm sorry and i hope to be a better friend, listener, lover, a safer place to fall, a source of laughter, light and fierce loyalty. Why am I suddenly spouting emotions? Here goes. 

I learned today of the passing of someone who loved me and I loved for many years in another life. Perhaps I didn't love him enough. Perhaps I was afraid that my love could never measure up to his.  I was younger and dumber then. Over all the years that have past, even when I've been my happiest, every now and then he would cross my mind. He was one of the good ones, one that loved me with an innocence and kindness I will never forget. He looked at me like I was a work of art, a splendid and breathtaking wonder that could transform him into the best version of himself. He made me feel special, beautiful, listened to and deeply heard. He was everything I always wanted and at the same time everything I was afraid to give into. I broke his heart. I never said I was sorry until many many years later when we reconnected briefly over a phone call during my cancer and I never let him know that he was one of the very few in my life that I let get away. I did not appreciate what I had in front of me until I was much older. I often wondered over the years what our life may have been like had I just been able to fully understand and reciprocate his love in kind. He wanted to marry me. I believe in my heart we would have been immensely happy and fulfilled. 

I fell in love again of course and had loves that brought me immense pleasure, laughter, love, meaning. I married my wonderful Max. Yet a part of me always wondered what may have been as we often do with lovers past.   I will always wish i would have told him that his love changed me. That his love was the kind of love that I eventually sought out in later relationships when I was older, smarter, more confident in my ability to be the partner I wasn't able to be for him and later wished i had been able to be.  

When I heard of his passing hours ago, the sense of loss i felt dropped me to my knees. It made me long for the days of youth, the innocence and playfulness of new love, the pure joy in just soaking each other in without the strain of feeling jaded, confused, or empty. Days spent in bed spilling secrets, laughing, skipping work, making love and telling stories. No limitations, no game playing. It made me miss being young and dumb. Made me miss the easiness and excitement of new love interests without any other agenda except to live fully in the moment and with an intense purpose of creating and pursuing happiness together. The excitement of the kiss, the trusting hand on the small of your back, that heated rush to get as close as humanly possible to this creature that you are intently curious about. It made me sad for every friendship or relationship I dropped the ball on because I wasn't sure of myself.  It made me angry toward those that had dropped the ball on me.   I fell to the floor and I sobbed uncontrollably. Although I cherish my alone time, it is much different than the sheer emptiness that comes with loneliness. I have been lonely too long, isolated too long. 

 I looked around the room as i wept knowing there was not one exact person i could call in the moment who would understand my need for strong arms wrapped around me. I no longer had a person or even a friend here in this state I thought would become home but never did that would to listen to me cry until my cries turned to laughter. I  shook with grief and i had a very ugly cry. I wanted to be held. To be smothered in messy sheets, soaked in the sweat of someone else and the wetness of my tears, fully aware of not being able to tell the difference between pleasure and pain. I wanted raw intense connection with someone i fully trusted to both heal my heart yet still feel it beating strongly. I wanted to release all the sadness in my heart and pour it into someone else who could take it without flinching and put it somewhere that my 2 years injured brain was unable to. I wanted someone to see that im not as strong and confident all the time, that when I asked for help it was because I needed it. Badly i wanted to be the one who heard "Im here for you. And I'm not going anywhere" instead of the one saying it. 

I felt more loneliness and emptiness in my heart than I have in years. And that is saying a lot. More than anything, I felt deep loss and deep longing for a connected love that im unsure will ever come my way again. I missed my husband, I missed the ones that i let go because i didnt know any better.  I missed my friends, my dad, my dog. I missed the rush of feeling beautiful, supported, desired, unstoppable, cared for, prioritized. I missed mattering to someone. 

I don't know if someone will ever look at me in that way again. Every year that passes with more loss, more uncertainty, less abandon, less connection, less effort is time we will never get back. Am I the only one who feels this way? Am I the only one wishing for honest and true connections without pretense? Without bias, and judgement, and lost opportunities to make others feel meaningful when you had the chance? I hope not. I hope someone will see the longing in me, someone will want to dissect and accept every weird, wonderful and quirky thing about me, will comfort me when I'm sad, will rush to my side when I call. I hope for these things because I've had all these things. I know I'm deserving of being with someone who thinks the sun shines right out of my stubborn ass and nothing less. And I want desperately to be that for someone else again. 

So, to you, to the one that got away, I'm sorry. I didn't know then what I know now. If I did, I would have run at lightning speed toward you instead of away. I havent thought of you in so long but now I'm not sure how long it will be until I don't think of you and wonder how often, you thought of me over the years. You never married and would call every 4 or 5 years to tell me that you never knew love until you looked at me.   Thank you for being a painful but oh so beautiful reminder of what it feels like to be absolutely adored by someone with no motive except to see me smile. I replayed so many happy moments in my head tonight and I will never forget the songs you played for me on the piano that you loved, that walk in the rain, that missed flight connection that led to a raucous night in St. Louis, the lasagna we  burned  because we were out catching snowflakes on our tongues and having a snowball fight. Ill always remember the captivated look in your eyes every time you looked at me and didn't realize I saw you looking. Fly high sweet boy.  Say hi to my other lost friends, family and loves. Find me an angel and send him my way. I'm more than ready.

Forever your squirrel. 

And the Wait for Justice Continues....

 It has been 10 months now since I swerved to avoid a drunk driver flying at me at a high speed in my lane against the flow of traffic. 

Since my last incredibly convoluted and lengthy entry which made my head spin looking back on it, I have some updates.  I can't believe any of you managed to read that through to the end because I couldn't even get through it once I looked back at the published version.  That was just another up close and personal look into what goes on in my head on the daily.

Anyhoo, I'll try to make this one more manageable. It's no surprise that my level of anger, irritability, confusion and frustration has reached a level that is all consuming. This has both fueled me into action as well as exhausted me and continued to make me feel erased and victimized.

I have had a personal injury attorney since last August, a civil attorney. That is all still hanging in the balance with insurance companies. The state of FL  specifically the state's attorney office is handling the criminal case which is a DUI case of the State of Florida vs. the person that caused injuries to my body, my brain and damage to my vehicle. He was arrested and charged with a DUI, not yet convicted because the trial is set for just 2 weeks from now if theres not another postponement.. From last August up until April I was being considered a victim in this case. I did not find out until mid April that the state attorney assigned to my case removed me as a victim and changed my status to simply a witness, after they requested my victim impact statement to corroborate my mountain of medical and dental records, loss wage statements, report from Honda after replacing the tire that got destroyed from me having to forcefully fly up over the curb to avoid him, accident crash report, 911 call, the list goes on.

Why? That's an answer I still have not received a clear response to. Apparently the tree he hit is what what is considered the damage to another property or person listed in his charges.  I went down to the courthouse and sat outside the courtroom of the state prosecutor handling my case. I waited for him to come out and asked him why? I did not get a very clear answer other than our vehicles didn't technically collide. However, it was only through his negligence that I have had to have my life, health and livelihood completely uprooted. Because I took action to save my own life from a drunk driver and narrowly avoid him forcing my vehicle up over the curb onto the shoulder resulting in a devastating acceleration deceleration diffuse axonal brain injury along with injury to my body, teeth, vehicle and eventual loss of my ability to work while i was being treated and until I receive the additional treatment I need. 

I left that meeting in tears feeling misunderstood, unheard and completely baffled. I had asked him to further review things and questioned if i was able to be reconsidered as a victim. He said he would look into it. I followed up with an email that included the following:

 There is one question I would like a simple yes or no answer to that I don't think I asked in the most direct manner this afternoon.

 Is it the opinion of the state of Florida that the injuries I sustained on August 11, 2022 were completely unrelated to any actions of(insert offender name) .or yet to be determined crimes he committed? Is the state of Florida maintaining the stance that the injuries I suffered that night and continue to suffer from  are in no way a direct result of (insert offender name) negligence, DUI, or wet reckless driving, whatever the outcome ends up to be? 

If the answer is yes to those questions , I am reiterating that I believe the state of Florida judicial system has completely failed me by not recognizing me as a victim that is deserving of restitution. Furthermore, if the answer is yes, I will hold forever the belief that Florida possesses a very flawed system and that I have been served a complete injustice by a state that I had hoped would support me,  the one innocent and injured party in this entire scenario. 

As said to you earlier, it is my hope that my voice be heard and that my health and quality of life matter to the state I began supporting  when I became a resident in 2020. I am now greatly disappointed that it seems that criminals are awarded more leniency and mercy than the innocent in cases such as mine. In no way were the events that occurred resulting in my injuries on August 11, 2022 NO ONE'S FAULT. 

Well, I never received a response to my yes or no question, just a response saying they looked at things again and I still wasn't being considered a victim. However, I did receive a subpeona after that to appear as a witness at the trial.

I have since contacted an advocate from Mothers Against Drunk Driving who was baffled by this as well after hearing my story as were her superiors.  But without me being named a victim, their resources for me are limited. I also contacted a crime victim advocate from Sarasota County who in turn connected me with a victim advocate from the Sheriff's Department. The advocate from the Sheriff's department has been attempting to contact the officer who wrote up the initial report. As of yet, I do not know if this has been done.  She did reach out to the state prosecutor handling my case and reported back to me that she fought to get me included as a victim but the state prosecutor still said no. The reasoning was that there was not enough evidence to include me. Well, that certainly doesn't add up. I still need and deserve an explanation. She was very kind and sympathetic, obviously this is out of her hands, and offered to set up a conference meeting, either on the phone or in person that would include the state prosecutor, me and herself in order for me to get a firsthand response from the prosecutor as to what is "not enough evidence".

I have questions I deserve answers to. Before that night, I had never been under the routine care of a chiropractor in the 2 years I'd lived in Florida, I'd never in my life seen a neurologist or nueropsychologist. I had never had an MRI or DTI of my brain, I did not have chipped and moved teeth with evidenced before and after pictures once my brain fog cleared for a moment to notice. I have never slurred my speech or stuttered routinely.  I was never unable to form sentences or remember words or objects. I had never had a migraine type headache, never been a routine headache sufferer in general. Before that night, I did not have a punctured tire or bruises on my body aligning with the buckles of a seatbelt among other places. I was not sensitive to bright lights or loud sounds, had no ringing in my ears or constant head pressure. It had been years since i had a nosebleed let alone repeated ones, memory loss, have issues with depth perception, peripheral vision, spatial awareness,  reading, writing, watching tv, loud music. 

Before that night, I had no tingling in my extremities, no tongue that deviated to one side, no nystagmus in my eyes. I had never been diagnosed with a traumatic brain injury, especially the type that can only occur specifically as a result of an acceleration/deceleration incident. I was able to work without physical pain and cognitive difficulty and be successful at my job. 

Before that night, I had never had to put post it notes all over my house reminding me to brush my teeth, turn off the stove, check that the fridge was closed. It had been a long time since I had experienced that much physical pain. I have never had issues with executive function. I never panicked in a grocery store or had to wear my keys around my neck. I actually had muscle tone and wasn't randomly peeing myself from urinary incontinence. Sometimes with the occasional sneeze or fit of laughter, but not just at random.  I never knew what a hyperbaric chamber was let alone been in one. I need to be in one a lot more to help with my recovery but I can't afford it. I am financially tapped out and just entered another month in which I will receive a past due rent notice and maybe an eventual eviction notice if I can't manage once again to scramble to get current.  When the money is there, I choose my dental payment, my car and health insurance, my cellphone, my loan payment, my credit card bills, my supplements., gas, electricity., internet. The list goes on. For the state prosecutor to tell me there was not enough evidence supporting that all I had experienced was not a direct result of this accident is an absolute injustice and insult. All of these things were just a string of unusual and completely random coincidences?   Seriously?  I deserve. Justice. How many other people in this stupid No Fault State are in my same situation?  I'm curious to find out. And I bet the answer is staggering.

At this point, I am completely unaware if this asshole even knows the extent of my injuries. I am wondering how I am supposed to give witness testimony that doesn't include how this man has robbed me of a life free of stress, pain, injury and complete financial devastation.  I'm going to share my story in that courtroom no matter how many times i may get an objection because I will be there to tell the whole truth and the truth is that  I deserve restitution.  There is no world in which it makes any sense that what happened to me on that night and is still ongoing is not the fault of this other driver.  I am not going to be quiet anymore.  Would he not be considered at fault if he was drunk and ran a red light? if i was walking across the street and he ran a light illegally while intoxicated, if i had to run to get out of the way of his car and tripped and sustained brain and bodily injury, would that not be his fault? Without my testimony as a victim, I will never receive monetary compensation for my out of pocket medical and dental expenses, lost wages, or future treatments still needed. I will have been erased by the state of Florida as deserving of restitution from the Florida Victim Compensation Fund. More importantly, no jury or judge will even be allowed to hear my testimony or see the evidence on my side, let alone rule on it.  That's just fucked up.

I was supposed to get a call back on Monday from the victim advocate to schedule this meeting and it is now Wednesday and nothing. I left a voicemail this morning.  Again, she was incredibly kind and caring, but the waiting continues and the waiting has gotten to me.

And so the frustration builds. Another day has passed without promised calls or answers or the ability to schedule treatments for recovery. Just some more eye strain, head pressure and talking in circles with no one listening. 

Til next time....I really can't wait to get past the angry phase and get to some funny or uplifting stuff or maybe even some good news.  I know healing is possible but I'm digging out of a huge hole. I'm terrified that I won't get the treatment I need in the time that i need it and am fearful of further regression. A brief thanks for now to anyone who did reach out.  Please keep it up. I need your words of encouragement and support. What a lonely and scary time  this has been. 

Geez. So much for what I thought would be a shorter entry. I really do need to follow through with my promise of a video blog. I've never done it but i will at some point...no one deserves to read this much crap. 

Peace out, peeps. Don't drink and drive.

And yeah...I noticed there are at least 3 different fonts in this entry and i can't figure out how to deal with fixing that right now. 

It's Been Awhile: Where have I been? I'd like to know too: Navigating life with a Traumatic Brain Injury

Hi friends.  It has indeed been awhile. This first post will be lengthy.  Riddled with errors and probably nonsensical and scattered. If you are still out there, I hope you will read my words once again. I hope you know how much I love you and have followed your lives on social media like a bystander looking in hoping to gain the courage to reach out.  Silently wishing you knew that I was cheering you on through your successes, crying with you through your losses, hearing all of your joy and pain and laughter and being literally unable to speak or interact at times. I have watched from afar as so many people I know have enjoyed great successes, crossed important milestones and suffered deep and agonizing losses. I have had dear friends, 3 ride or dies of mine that have lost their lives to cancer, to heart attacks, to other sudden and unforeseen circumstances this last year. I have watched as the world has become a place of hate and anger, ignorance, intolerance, injustice. I know we are all baffled by the level of civil unrest, inhumanity, and uncertain times we are all witnessing. 

I have been quiet.  I have been absent. I have been less than a friend, less than a comfort, less than interested, less social, less present for all those that I love and even more sadly for myself. I've missed birthdays, anniversaries, funerals, memorial services, births, holidays. I've spent every holiday since last August including my birthday alone. I do not get invited to social gatherings anymore or very rarely. I'm kinda socially awkward now.   I have retreated for many reasons and there isn't any one person that knows my complete and entire story this past 10 months. I have had so much to say for so long but my words have failed me in the ways they used to serve and heal me.   I am finding my voice again and it's time to start sharing my story. I don't write or speak as eloquently as I once did and it takes me hours/days/weeks to form emails, messages, or make phone calls. When I don't feel like I am in a safe place with people I trust, I simply just shut down. 

I often struggle to form sentences, thoughts, to do more than one task at a time. I ramble and repeat myself and many times struggle to ever get my point across. The words that come out of my mouth and the words I see when reading or typing are backwards or jumbled or just out of order. I backtrack through every thing I do in life. I am forgetful and live by a written calendar. It's amazing that is the one thing I have not physically lost. Why has all this been happening? Three little letters in many forms that add up to one big mess: Someone else's DUI=MRI + DTI=TBI more specically DAI. And here is where it begins.

On August 11, 2022, a clear and beautiful night on my way home from work, I was forced off the road by an intoxicated driver, leaving me with physical, mental, emotional and financial pain and suffering along with damage to my body, my teeth and the eventual devastating diagnosis of a traumatic brain injury. The type of brain injury I sustained that night is not detectable on a standard brain MRI. If not for my second and current kind, knowledgeable and caring lawyer(my first could not have been more cold and uncaring) realizing my delicate and precarious state of mind and physical and cognitive disturbances, I would not have known to undergo a DTI. For those of you needing a clearer definitionlike i did, this was the easiest for me to wrap my injured brain around.  

https://windsorimaging.com/what-is-diffusion-tensor-imaging/

It was over a month that I was literally stumbling through life in pain and confusion before my DAI diagnosis(diffuse axonal injury) was discovered through this DTI. So what is a DAI? That was a shitstorm I was not prepared for.  Even after the diagnosis, I had no idea how much of my life and abilities to live it freely, functionally and without fear and struggle would be impacted. Again, for the uninitiated, a DAI and the many complications I have experienced are detailed in the following article from Johns Hopkins Medicine website. If you google DAI, you will find much more information that you might not want to know.  https://www.hopkinsmedicine.org/health/conditions-and-diseases/traumatic-brain-injury 

Here is a Video that simplifies it as well that is about 4 minutes long if you have the time or energy to look through it. 

Because of this, my life has been quite chaotic, scary and frustrating. Which is the way life goes sometimes but this is yet another lesson i didn't need to learn. I am scared and angry and once again my future that was transforming finally into something good and fulfilling is now hanging in the balance. I will always have some sort of cognitive impairment even if on a minimal level assuming I can get the treatment I so desperately need that is not covered by the ass backwards Florida "no fault auto policy insurance" laws. Yes, I have an attorney and a great team of doctors finally but we are all limited by funding and in many ways my care is on hold pending whatever small settlement may come in an eventual civil suit in addition to a demand to both my own insurance company and the insurance company of the asshole who put me in this position.  The bulk of that will go to pay back my amazing team of doctors, my dedicated lawyer and my insurance company. Did you know you had to pay back your own insurance company for benefits received out of any settlement from a criminal or civil suit they paid you that you have been paying for since you ever could even drive? What is the point of carrying insurance if you have to pay back what you are paying to be insured for? At least in a no fault auto claim state like Florida. It's preposterous to me. 

Because of the complex details of my accident which I will over time share more specifically in future entries, the state of Florida has removed me as a victim in their criminal case against my offender because our cars did not actually collide.  This drunk driver came flying at me in my lane against the flow of  traffic after speeding through a roundabout while intoxicated.  His vehicle crossed the median,  hit a tree at a high speed, forcing me to take evasive action missing him by inches to less than a foot and fly up over the curb to avoid a head on collision that may have left me dead or fighting for my life. It resulted in damage to my teeth, body, emotional and mental capacity and my brain which is a key factor in healing all these other things and is now unable to function at full capacity. Take a moment to look up DAI again. A DAI(diffuse axonal injury) is the same type of injury sustained in deaths resulting from shaken baby syndrome.   A minor DAI is what i still suffer from. A moderate DAI usually means coma. A severe DAI more than often ends in death.

How is it that I have been erased as a victim of a crime? I called 911. I waited for officers at the scene that handled things poorly as I've found out over all this time, erasing me as a victim by their initial inaccurate reports. I had just suffered an unknown brain injury and learned too late that the write up on the officers reports were not as they should have been.  I watched this other person emerge from his vehicle with not even a concern for my well being.  I fought to be added to the crash report which I found out the day after the accident I was not included in as an interested party. I've since learned the crash report is not admissible in court, just the inaccurate officer's reports. How is this fair or possible?   

I have been  called to be the wheel witness for the state of Florida against this person in criminal proceedings, allowing him to plead down to a lesser offense. This means he will more than likely walk away from a  felony DUI conviction, leaving me with nothing to gain in tens of thousands of dollars in lost wages and out of pocket expenses not covered by Florida auto insurance personal injury losses.  My dental payment alone is $450 a month.

In order to recoup these expenses from the Florida Victim Compensation Board, the offender would have to have caused serious bodily injury to someone and be convicted of a felony DUI.   Ummm, hey Im here!! I more than qualify.   I began stuttering in the following weeks to months , slurring my speech, dizzy, nauseous and vomiting,  terrified at not being able to verbally communicate, experiencing migraines and nosebleeds, extreme neck and back pain,  peeing myself from urinary incontinence, unable to understand simple questions, constant ringing in my ears, numbness in my extremities, sensitive to lights and sounds, with worsening vision, depth perception and peripheral vision issues.  Spatial awareness problems freak me out. Panic attacks were unexpected and frequent early on and still linger to extent. I still struggle with head pressure, balance, tasking/executive function, muscle atrophy and weakness, neck/back pain, confusion and short term memory loss and that's not even close to all of it. The difference between up/down, forward/back, left/right commands cause me trouble.  Among so so many other things that I will try to detail in upcoming entries.  I hope some of my dark humor that accompanies a damaged and fighting to heal brain will give others that are struggling feel a sense of inclusion. 

So Yes, they want me to be a witness, but not as a victim of a crime committed.  It is apparently the consensus that these were somehow two separate accidents because our cars did not touch each other(no fault state) and that the injuries I sustained were in no way a direct result of the negligence of the impaired driver that almost took my life. According to the state of Florida, I am just someone who saw this happen but did not suffer directly from the negligence of this reckless impaired driver who in 15 seconds wrecked my body, brain along with my social and financial livelihood. As of April 1st at the 8 month mark,  250 plus chiropractor, neurologist, dentist, orthodontist, audiologist, psychiatrist, opthamologist, lawyer visits in 240 days comprised of maybe double that in hours and I am not a victim? Florida has failed me. This "no fault state" has been the definition of injustice, a source of disappointment and has made me feel invisible, unheard and very very vulnerable and angry in a time I should have been healing and not constantly scrambling for support. Had fate been left in the hands of my offender, had i not taken action to save my life in those few seconds, I have no doubt I'd be even worse off than I am. Of all the things I've been through, this was the first time I actually saw my life flash before my eyes and was sure I was going to die in that exact moment. It is an indescribable feeling. 

I will share the testimony I have detailed of the accident and aftermath in a future entry. Everything I have and continue to experience. I will probably repeat myself many times because that's what I do now.  9 months later, my head pressure continues to build when i bend down to shave my legs, when i try to exercise,  type or read or have to focus on daily tasks that were once so simple. Reading, writing, exercise, dancing it out are all things I struggle with now, all the things that used to be my escape. I miss being physically fit and able bodied to the extent I was before. I have post it notes all over my apartment reminding me to brush my teeth, turn off the stove, check my laundry, wear deodorant.  I wear my keys around my neck on a chain and often still struggle to locate them. I have aligners on my teeth because they all shifted and a few chipped during the accident.  I spent 5 intensive days of brain therapy at the end of April at the brain lab at Florida Surgery Consultants in Tampa which is a small fraction of the amount of the therapies I still need to come close to recovering my balance, vision impairments, many cognitive impairments,  sleep disorders, overcome my anxieties and have a chance at thriving and not just barely surviving. I spent those days in hyperbaric chambers, cognitive assessments, vestibular therapy,  virtual reality sessions, treatments such as TMS, Gammacore, Fisher Wallace, biofeedback, nuerofeedback, trigger point therapy, etc, etc.

 My QEEG in April compared to November revealed that I hadn't made much forward progress in certain areas, some improvement in other areas and that I was still considered to be in a moderate to severe post concussive state. But still not the victim of a crime. Baffling.  I will begin using the

 Fisher Wallace device when it arrives this week to help combat anxiety, depression and sleeplessness.  I'm fighting with insurance to get my chiropractor and TMS therapy covered because my insurance does cover these doctors, but of course my insurance company is fighting me on coverage.  I still need 35 more hours of hyperbaric therapy which is not covered by insurance and is a hefty $200 an hour. I have regressed in the last weeks in certain areas and I need these therapies to recover as fully as possible but the funds just aren't there. I'm terrified of further relapses and doing further damage by not following through with treatment. I am clumsy and fear re-injury if i were to lose my balance or hit my head again. I desperately want to get better.  I am tired of life passing me by.  The last nine months have been the loneliest, most isolating and confusing times I have ever experienced. I may look silent, but am screaming inside. For peace, for justice, for understanding, for human connection. What is life without human connection? It is a vast and terrifying wilderness. 

I haven't worked since mid October. It's hard to be in the hospitality industry when you have trouble speaking, swallowing, balancing, and look confused and distracted all the time.  When you can't remember what you are doing and are constantly dropping things and bumping into walls. When you don't remember words or names of objects. I have managed to barely stay afloat by spending any savings, maxing out credit cards, selling possessions, small gifts from the few friends that followed through in checking on me after I reached out, my family and some limited community resources. Each month there is the stress of avoiding eviction when i should be focused on healing and recovery. I have wrestled with the idea of applying for SS disability benefits which wont even cover my rent and will leave me with half of my full retirement income with no chance of ever going back to the higher amount even when i am able to come off disability which I know is more than possible  if/when the stars align. This process alone will take months to approve assuming i get approved and by then I may not need it anymore best case scenario. I guess half is better than nothing but reality bites in the long run.  It is recommended I complete an additional 30-35 more days/hours of hyperbaric treatment and TMS therapy, along with continued chiropractic, self care including physical and cognitive exercises. I have many more months of dental payments ahead of me. Follow up brain scans and another QEEG to determine the level of success i know I can make if I can find a way to receive the expensive care i need as quickly as possible to get my life and health back and begin to pick up the pieces of my very confusing and exhausting present state. Healing is possible and I want to heal. 

For now,  I need support and I need people to check in. I don't have a huge support system in place here in Florida and I have felt incredibly alone navigating this process. My dearest friends, my family, my dog are all distanced. I have distanced myself from a social life here for the most part because it's just been too much work to reach out at the end of exhausting days, through physical pain, brain fog, neuro-fatigue, every sort of exhaustion. I am still me. I'm still funny a good portion of the time and can find moments of joy and escape. Yes, I'm harder to understand at times, I can be more easily irritable, things that come out of my mouth often don't make sense even to me. I need people to speak more slowly, I get overwhelmed answering questions and I panic with last minute changes in my routine when I used to be so carefree, easygoing and adaptable to change. 

 However, I need and long for company. I need to take walks, watch sunsets, listen to music, play games,  and enjoy as many social things as I can handle. I also need more rest. How can one rest in a constant state of uncertainty? How far can I bend before I break?  I need help organizing and staying on task. I need friends to call, stop by, visit me if you need to be by the beach for a few days, laugh with me and talk about our combined daily life stuff. I know I'm not the only one with stuff.  It's way past time to share my story because I need y'all to know why I've been MIA.  I am not ok and the injuries I sustained were no small thing. Most people think because I look ok that I am ok. They do not see the panic in my head as I try to navigate thinking and speaking clearly, trying to avoid falling, bumping into things, dropping things. They don't see me lying for hours or days in bed as my head throbs and I experience  catatonic time lapses that sometimes last for hours, even days.  They don't see the panic of lights and sounds or know that it takes me days to a week to recover from one social event or concert I attended in an effort to feel anything close to what my normal used to be. They don't see me panicking in a store unable to function because there are too many colors, too many choices, too many outside sensory overloads. They don't know that I stare at my closet and drawers and am overwhelmed simply choosing what clothes to wear.  They don't see me freaking out because I can't organize my house the way I used to. I'm embarrassed at how things are always so out of place. All or maybe most of these things have improved to a degree, but there is still much work to be done. 

I'm learning that much like my battles with anxiety and PTSD which on top of a brain injury create the perfect storm, traumatic brain injuries and neurological disorders are very misunderstood and isolating.  I did not want to know the reality of these things or get a close up view and experience things that I'm learning through research many suffer from. Neurological  and brain disorders that are unseen have left me shocked and appalled at the treatment I have received from many people. I have experienced personal and medical gaslighting to its fullest extent by strangers as well as people I used to consider friends that have all but dropped off the face of the earth even after I tried reaching out when i felt strong or brave enough. I've been called too emotional, too sensitive, to impossible to talk to or deal with. My left lobe was impaired during my accident and this is the part of my brain that is responsible for regulating emotions, decision making, rationalizing, compartmentalizing, organizing thoughts. I've been accused of "playing the victim". Isn't having your entire health and livelihood being wrecked by the negligence of another through no fault of your own the definition of a victim? Where has kindness, compassion, empathy and understanding gone? I'm thankful for the few people in my life who have answered my calls, continued to talk and laugh and support me through navigating this impossible uphill climb. You know who you are and I am eternally grateful. I have felt completely abandoned by others but true colors and true friends emerge in dark times and that's certainly nothing new to me. 

I would suffer any illness or injury I've suffered in my life that had a clear end in sight rather than suffer a brain injury with no clear timeline or guarantee of healing. Cancer, shattered bones, witnessing the suicide loss of my husband, navigating pandemics, unemployment, tornadoes, hurricanes, PTSD, anxiety, widowhood, all of these combined are so much easier to understand why they are affecting you than the sudden and uncontrollable loss of my cognitive faculties and the downward spiral of a damaged brain. Just saying that is so messed up.  I don't even know who I am anymore. I see my run on sentences and grammatical and punctuation errors and I long for my ability to speak, read and write clearly again. I want to ride my bike, ride a rollercoaster, run up and down stairs all without fear. I want to remember what I was just about to google and not wonder if it's possible to google what were you about to google. I want to work, to contribute, to travel, to rest my overloaded and understaffed brain. I want to stop peeing myself and falling into walls, bumping into things. I want to stop being socially awkward. I want to be free of physical, emotional and financial suffering. I know I'm not the only one who says or feels this on the daily, but I have to use my voice and not be silent anymore. I have to speak my truth to feel like I am heard.  I have to stop feeling less than because I can't do the things in the same ways I used to. I have to speak for all of us with brain injuries that are tired, confused, misunderstood and made to feel vulnerable and scared walking around the world.

My eyes are tired and if you managed to make it this far, then so are yours. Thanks for reading. This is such a long entry and I don't even know if I got my point across. To sum up, if i had a cupcake, I'd shove it up the combined asses of drunk drivers, mean people, brain injuries, the Florida no fault insurance system, this inflated economy, run on sentences and a completely messed up judicial system.

Stay tuned.....and stay safe out there, peeps. We all know what a weird and messed up world we are stuck in right now. Savor the moments of happiness and peace you get. Rejoice in the small things, the good things, even if it's just managing one small task in a day's time.  Be kind because kindness is free. Spread that crap wherever you can. Check in with each other. Support one another in whatever way you are able. Do not judge what you do not understand.  I'll check in as soon as I'm able to compose another entry. This one took me a month.  Off to worry about everything. 

From March 7,2020-Tornado aftermath

Long post before i get in my car because if you know me you know that writing is my escape. So I'm just about to leave work. Its 12:09. I cant focus enough to stay on task and it took me hours to do what I'd normally accomplish in 30-45 minutes.

 I'll get home after midnight and have at least 2 hours of cleaning to do tonite after this week of evacuation and destruction now that my power is back on. Because the mess heightens my anxiety.  If you havent been in the heart of the mass devastation, please believe me that its absolutely heartbreaking. I see those just steps from me incredibly less fortunate than me right now. I know I was one of the lucky ones. But I still live inside my head. I had no idea how this would exacerbate my PTSD, anxiety, depression and insomnia. I've slept maybe 10 hours since Monday night, I've hardly drank any water, I've eaten very little but a bit thanks to my friend who so graciously hosted me. I'm heading home to a completely empty fridge and I'm literally running on empty. Emotionally, physically, mentally, financially. Im not doing well. Not in the way I may harm myself but in the way a panic attack at the sound of one more siren will bring me to my knees and paralyze me. In the way I look at the side of the bed my person used to sleep and long for the loneliness to be wiped away. Wishing I had someone to be there and tell me they've got me and say something dumb to make me laugh.

 Sleep and anxiety meds have ceased to work. My body hurts, my brain hurts,  my heart hurts, I'm tired. I am unhealthy in mind and body right now. In every way a person can be tired and I feel like I will eventually collapse because either my brain or my body will give up on me. My logical brain knows I've been here before and I survived. My impaired brain can't get the visions of what I have seen with my own eyes this week out of my head. I'm filled with sorrow for my friends and neighbors and strangers that lost homes, lives, all possessions, businesses, jobs,  complete lives uprooted and forever changed in an instant. And visions from the past are creeping back up because I'm not in active one on one therapy anymore due to the expense.

 I'm worried about taking care of everyone and everything else and i should be taking care of myself. I'm posting this not for pity, but in the hope that this may make someone else not ok know that they are not alone.  And provide some perspective to those that dont suffer with mental illness or PTSD understand how the way I appear on the outside is not the way i actually am on the inside. I'm also checking in because I'm too tired to answer every text and call from all of the wonderful friends that have sent me messages and called. I'm safe and I have electricity and a roof over my head. I have my belongings. I'm grateful. But I'm asking all my prayer warriors out there to include me tonight. Even though I'm not religious and I'll never find a reason to justify people having to suffer like this, your prayers do comfort me and your support and kind words do not go unnoticed. I now have shelter and heat and will share what I can. The thought of grocery shopping exhausts me right now but I've got wine and vodka and I'm happy to share.  I will pray in my own way for peace and healing to embrace you even if for just a moment. I'll check in soon friends. Stay safe. 💔💔💜

 #ifihadacupcake #ifihadavacation #insteadilltakeaprayer #unashamedtospeakmytruth

.From May 20, 2019..Preparing for the Journey Ahead

Tonight I am thankful. As I traveled with the box of Max's ashes to Franklin to take my sweet friends booty kicking class, our song came on the radio. It was the first time Max and I had been in a car together since I picked up his ashes more than two years ago. I know it was no coincidence that our very rarely played song came on as we were sitting in traffic. Max, you continue to surround me with your presence and your love greets me around every corner.

I brought the box because I was spending some long overdue girl time with Amy Kletecka Weber, who was there the day I laid Max to rest and I could not have imagined opening that box with a more kind, loving and supportive soul. The biodegradable shades of blue container was as beautiful as I hoped it would be. It will float on the waters in Puerto Vallarta in a few weeks and eventually sink into the waters that we both loved, sending Max into an even deeper peace than I hope he has already found.

Ya'll know I'm not the most God fearing gal on the planet, but I've always found a peace with Amy that I cant explain. Her faith in God and the Holy Spirit is inspiring and comforting even if not fully understood or realized. The moments we spent holding hands over Max's ashes were filled with sweet love and friendship and whispered prayers for peace for Max along with a shared gratitude for each other. And a prayer for peace and understanding for all of us on this earth. And thank you sweet Elizabeth for calling at the exact moment of our prayers. No coincidences, my pineapple soulmate.

Tonight, as pensive and anxious as I am about the upcoming time of another goodbye, I am thankful for signs from another world, a friends hand to hold, a friends voice on the phone and the peace and safety that surround me in the presence of my dear friend Amy. I hope you always know that you are a light in my often dim world. I am blessed and grateful for your presence, no matter how near or far we are. You are still my jam as HS is yours. Our journey is still evolving.

Max, Amy and Lissa, you all came together tonight and showed up for me. And Doc Downs you rounded out the night with some shared misfit talk on the drive home. Nothing but love.  #friendship #max #pineapples #perfectlyimperfect #gratitude

Goodbye Gram..a eulogy to remember

This is from July 11, 2013. Not sure how it got moved to today. I'm working on a new blog entry and must have hit something weird.  I'm writing again and will be back online soon.

Marcella Juszynski Oct. 30, 1922-July 6, 2013

Thank you all for coming to celebrate Marcella’s extraordinary life.  My name is Kim and I am her grand-daughter.  I’ve never written a eulogy before and I have to admit it’s no easy task. How do you sum up 90 years in a matter of minutes?  I’m not sure I know, but I hope I got it right, Gram. 

If all of you get a chance before you leave, please read the articles circling around that share the story of her life and good works and survival against great odds. Her story before I came along is both amazing and inspirational.  But, It’s my story of life with her I’d like to share with all of you today.

I moved into my grandma’s building approximately 11 years ago. She took me in at a time I was going through some heartbreak and needing a change of scenery and a fresh start.  She took me in with open arms and a loving heart.  I have to admit I was never terribly close to my gram during my childhood.  Her husband died when I was only 4 or 5, so I mostly remember her on her own.   The things I do remember:  We called her downtown grandma because she lived closer to downtown than our other grandma.  She was always what most people would call a bit peculiar, eccentric even.  At one time, I swear she had about 20 parakeets livings with her in cages and free flying around her kitchen and back porch.  She used to only wear skirts, never pants but when she began to get older in the colder weather she took to wearing pants under her skirt.  Eventually she got down to just pants and lost the skirts.  I remember a little white dog she had.  I don’t remember it’s name but I remember that she actually washed that little dog’s butt in the sink after it did its business.  I remember the sickly bedridden neighbor a few streets over that she gave food to via a bucket that was lowered out of the window. She loved her plants and her house was filled with them.  Along with a constantly growing and changing array of collectibles scattered from room to room.  

After moving 2 doors down from Gram, I began to spend more and more time with her. Trips to the doctor, to Kmart, to Walgreens, to Aldi, to the Polish bakery and deli on Milwaukee ave.,  to the post office to pick up stamps for the many letters, birthday and Christmas cards I helped her send, to which many of you here today have received.   I remember taking her to the liquor store one time and the clerk asking us if we needed help. She said she wanted whiskey.  What kind, he asked? The biggest and cheapest bottle they had was her response. It helped soothe her throat when she had a cough.  Everytime I drove her somewhere and made her put her seatbelt on, she would look at me and laugh and say “Time to put me in jail.”  She never failed to comment that she didn’t like tomatoes since she had a stroke, that she thought the soup was too expensive at Club Lucky, and she always wanted to know which cost more, my cellphone or my home phone?   

So as the years passed living close to her, I began to realize how uniquely special she was. On warm days, you would often see her and her best friend and roommate Diane sitting on the porch, laughing and talking and feeding the birds.  I’m glad they had each other and know they are together again. She always had a story, she always had the neighborhood news. I would meet new neighbors and when they would learn who my grandma was, they would speak of her with kindness and affection and remind me of her classic catchphrase “don’t ever get old.” I realized truly what a fixture she was in our community.  Everyone knew Marcella. The neighbors down the block who bought her a bottle of B & B  every year for Christmas, Billy and Ronnie at Lincoln Tavern who often commented I had just missed her. She would walk to the corner bar and trade them quarters for dollars. Anna down the block whose porch she would sit on when she needed rest on her walks.  My next door neighbors, Robert and Gary and Lisa who would ask about her every time I saw them.  Rich across the alley who upon hearing the news of her passing texted me “She was a very special woman. The kids will be crushed.” His kids would always yell “Hi Marcella” from the balcony or alley when they saw her. She often talked to me of how fond she was of them.  Officer Uting  who would chat with her often during his patrols and recommended her to be featured in the article written in January.  Alisa and Chloe, the reporter and photographer who spent two full days with her learning her story and taking some wonderful video and pictures. You made her feel like a movie star for a day and I know she so enjoyed you both. Your article and pictures will be treasured forever. Her kind and loving tenants Doug and Jenny who checked on her every day and especially  when  I couldn’t.  They just commented to me the other day that they felt in some ways they were closer to her than their own grandmas. She took them in, they said. I know. She took me in, too. I am so touched by how affected your lives have been by her.  I know for certain she loved you both like her own. So many people with so many stories.

One of the first things I learned about gram is that she had an unwavering faith in God. She took the idea of  “Love Thy Neighbor” to the furthest extent, always reaching out to help those in need, including myself and including the son she loved so much and the family she always thought of.  Dad, for Gram you absolutely hung the moon. She gave her time, her material possessions, her physical labor and her prayers freely and with a glad heart.   Through her, I deepened my understanding of the joy of giving and helping. Marcella was never happier than when she was able to lend a helping hand. This included the $40 weekly installment to Max and I for dinner on Saturday at a restaurant which we always tried to refuse but never succeeded.  She loved Max and his daughter immensely and asked about them every single day over the last few years.  I know for them she helped in her own way to fill a void left empty from losing Max's dear farher and mother in law last year who were like parents to Max.  Bob and Viola, you left them in very capable hands. Marcella was more than happy to welcome them into her family.

Another thing I came to learn in recent years is that Grandma and I were two peas in a pod and would grow to share a very special bond.  In late 2010, I lost my job of 7 years and was diagnosed with cancer two weeks later.  After finally feeling mostly recovered after a very difficult 2011, I then fell and shattered my ankle in early 2012. During these very trying and turbulent adult years, I suffered through financial difficulties, bouts of severe depression and anxiety, and a complete physical and mental coming apart at the seams.  I had a very difficult time because it seemed that no one in my life could understand or relate to the experiences I was having.  Except for Gram. She got me.  Somehow grandma was able to understand my life in ways that no one else could. She never lectured, never judged, and always understood me without my ever needing to explain myself.   She spent a half hour last year climbing up my three flights of stairs just to tell me she missed me when I was unable to walk. We have talked almost every day and every night for the last two years, hundreds of phone conversations often late at night because neither of us could sleep. We’ve had many walks, many talks, and many moments of shared laughter and pain.  I covered your feet, I cut your hair, and I did your laundry with extra fabric softener just how you liked it. We often joked over the last couple years that we were physically “good for nothing.”  But with all our aches and pains, the one thing we were was good for each other. Together we were steadfast companions, two advocates for the broken and misunderstood.  We were special to each other.  I was her person and she was mine.  

Though I am sad and there are moments when I cannot hold back the pain or tears, the part of my heart that belonged to her does not full empty, instead overflows. Gram and I, we had no unresolved moments or feelings. We knew exactly where we stood with each other. Every time I left you gram, I felt 100% complete and confident.  I loved you totally and I know you loved me. I know you were very proud of me and happy with how far I’ve come. Our connection was strong as steel and somehow that connection does not feel broken.  

It’s funny how life works sometimes.  The evening before my grandma passed, Max and I were walking the Wolcott Ave. strip with her like we had together so many times, at least twice a week it seemed..  Grandma used to grab Max’s arm to steady herself, but for some reason this time she grabbed for his hand. I watched them walking hand in hand down the street and was so moved with emotion at this moment of intimacy between the two people that I loved the most that I decided to snap a picture.  I posted it on FB with the caption “Max and my gram. Hot date on Friday night.”  I never thought to take a photo before on our walks, and I’m so glad I did.  It will be a photo I treasure as long as I live. My friend Jeannie told me the next day that it was if grandma was giving Max her blessing, giving him my heart, passed from her hand to his,  to take care of because she knew she would be leaving soon.   I wish she could have lived long enough to eventually see us marry and live happily ever after.

We parted that evening after we saw grandma safely home, cold ginger ale in hand.   I said, “goodnight gram. We will see you tomorrow. Call us if you need anything.” Max simply said “Goodnight, beautiful.” As we walked home from dinner that night around 11 pm, we saw your light on in the living room and I immediately took comfort in the fact that you were  safe at home, just 2 doors away.  I went to bed feeling content.

When I got the call and arrived at your house the next morning just after 7, I was heartbroken to see that your spirit had already left your body. I take comfort in the thought that you may have been on your way to my house for one last walk, one last visit, one last chat.  I’m glad you went peacefully outside on a beautiful morning sitting on the porch you so loved surrounded by the birds you so cared for and cherished.  I’ve been feeding them since you left and I know they miss you as terribly as I do.

I’m not the most religious person, Gram but I have to think that the God you so faithfully believed in knew that Heaven couldn’t really be Heaven without you in it.  I can’t blame him for wanting to call you home.  And I know you are happy and at peace with the family and friends you loved so much. I miss you every minute and I know I’ll see you again.

I’d like to close this tearful tribute with a poem I found I think sums up the way we all must fee

“The moment that you left me, my heart was split in two; one side was filled with memories; the other side died with you. I often lay awake at night when the world is fast asleep; and take a walk down memory lane with tears upon my cheek. Remembering you is easy, I do it everyday; but missing you is a heartache that never goes away. I hold you tightly within my heart and there you will remain; you see life has gone on without you, but will never be the same.

Rest in peace and comfort, gram.  I know I’ll see you again.