Now, it's been quite some time since the last time I wrote to you... And with due cause. Last year, as well as this barely-here-year, has been hard on ya girl. For real! Even before the Lyme Disease Awareness Banquet (and don't worry... there WILL be a post with pics of the blessed event... Like... it requires it's own entry!) but, as I was rambling, even before that event, I knew I was going downhill. I'd gotten extremely toxic. To the point of it coming out of my pours and whatnot. I was not okay. And I knew it. I could feel it. It was draining. It wasn't me! AND on top of my earthly vessel under constant attack, Life's, ass decided she wanted to join in too. Not to mention the many "physicians" I saw, determined to disprove my, very expensive, out-of-pocket PAID diagnosis of, Chronic Late Stage Lyme and Co-infections. And by October 2015, I was no longer in a committed relationship. And by the end of October, to now, I can count on ONE HAND how many times I was able to get out of this house, socially. Any other time I was kissed by the sun (if it was even out) was an ambulance ride due to seizures that no one can explain. Or a doctor's visit, I'd leave, PRAYING to God that the tears rapidly flooding my eyes wouldn't fall until one of my parents wheeled me back to the car.
*** No sympathy needed nor desired. I'm trying to paint a picture here of how things have been since we last spoke.***
So, here I am, roughly six to seven months into seeing the same people everyday. Losing my damn mind; LONELY AS FUCK. I used to have a lot friends... I was fucking congenial! But now, I was feeling more alone and pathetic and worthless and hurt than ever before. Days rolled together. I was seeing the same 4 people EVERYDAY. It was prison!--It is prison. When my family is worn out and needing time for themselves, they can leave! Go see a movie. Have a date night. Go shopping. Meet with their friends. And to be quite honest, it INFURIATED me that those ppl that loved me, felt like prisoners too. When they can escape this hell of watching me suffer feel helpless or feel the need to constantly watch over me... they can fucking escape!!!!... Me? I take this load of hell every single place I go. There is no escape. To me, as a person afflicted with this disease for roughly 15 years; there is not one soul more frustrated, angry, miserable, confused, heartbroken... NO ONE MORE ISOLATED, than me! Period.
Living with a chronic illness is an evil son of a bitch. It tears at your soul. Devours your optimism. Steals your zest for life. And all you crave, daily, is your life back. That's it! And when life throws you enough rotten ass lemons, you're reminded of just how alone you really are. Alone, in the sense of feeling forsaken by ppl you thought rode with you, unconditionally. But unfortunately, chronic circumstances and loyalty and/or compassion don't make for good bedfellows. And listen, I'll be 27 years old in a few weeks. This is the era of transition. Folks are living their lives. Finding themselves. Making new friends. Starting new families. Entering into their career fields. I get it... And I've accepted it.
However, it wasn't until someone shared their perspective on me, with me. They told me that I have isolated myself. To this day, I am not angered by that statement. Just reminded of how misunderstood, I, and my fellow Lymies and Spoonies are (Google "The Spoon Theory" for clarification). Misunderstood by loved ones, society, western medicine.--I mean, pretty much anyone with an asshole and an opinion. Allow me to be the one to tell you, in no uncertain terms... *ahem* ... TO HELL WITH ALL OF YOUR INEXPERIENCED ASS OPINIONS!!! And I mean that with ever beat and murmur of my heart. And as my dearest and BEST FRIEND, who also suffers from Lyme & Co., always says, "You don't get it till you get it." And before you think, "Well, Ty, you have, at least, her to keep you company!" I'm gonna need you to just quiet your mind and come out of, The Wildness of Ignorance, b/c my ride or die lives nearly 3,000 miles from me. *insert ugly Kim K. West cry face here*
"Well, Ty! Why don't you just reach out to them? They don't know unless you tell them." And the latter part is very true, my sweet devil's advocate playing readers. They don't know. And some don't want to. My life's a bummer. And I've been told that all I talk about is my battle with, Lyme. Well, gimme something else to talk about! And besides, that sharing my Lyme fight shit is no gah damn more... unless you're one of the one's who's been there and desires updates. But as the BEAUTIFUL and extremely graceful, Yolanda Foster (former model & mother to Gigi and Bella Hadid... & Fellow Lymie) said, "Chronic long-term illness is extremely challenging." And let me piggy back by saying, no one wants to be around a sick person all the time... Shit's depressing. *shrugs* And I will confess, I've DIED to call one of my old buds just to come and sit with me or hug me or just feel their presence and know that I'm not forgotten... However, aren't you kinda forgotten or put on the back burner, that no one EVER uses, if you feel the need to call and inquire if you still have a friend?? And I'll let you in on a little secret: There is a figurative (quite possibly, literal) enzyme that releases when you become "dependent"... "disabled"...Being So far off your "A-Game", knowing "Z" .isn't too far behind. (And if it ain't, damn if you don't sometimes wish it were! <-- The end, I mean.) But, as usual, I digress. There is something that releases inside you in a POWERFUL way... Pride. With no cure or compassionate understanding physician in sight... ***Not you, new doc! You're a dream come true!... You just make my and my family's pockets weep, that's all. LOL***
Pride, just like the Lyme, Bartonella, and Babesia cells, that course through my veins, party right along with them three petty bitches. I'm not calling to ask a damn person to come love on me! It is no longer a secret that I suffer from an invisble disease, that controls EVERY aspect of my life, with "no known cure" in sight. Why the hell would I do that? Not many people know that my immune system is just a weak as a newborn baby w/ no hope of breastmilk. No one knows that whenever my neighbors hear an ambulance siren, they immediately think of me. Not everyone knows that I've developed dyslexia. I don't like to publicize to those that I haven't heard from, for months, even years on end that on more than one occasion, someone has had to BATHE ME! No one knows that my speech gets so inaudible that I have to communicate through writing or the very little ASL (American Sign Language) I still remember. ***Mad shoutout to, Mr. D., for teaching my sister and I ASL way back when. Not a third of us could have ever imagine the impact it would have on my life today! You are appreciated!*** No one knows how hard it is for me to get out of bed... if I do at all. No one knows that the night I had my first seizure, 3 years ago, that some of my own family (not all... stay outcha feelings) realized, "Oh, damn. She's really sick."
I don't feel safe, nor wish to place any discomfort on ANYONE I used to kick it with that doesn't know what to do for me in case of an emergency. Hell! I figured I was being pretty thoughtful, not putting that pressure on them, simply because I'm lonely and miss what we had and who we were to each other. And this disease has changed me. At one point and even today (but no one but the day 1's see) that I am not the easiest person to love. And I know this because I struggle to love me too, at times. One moment my heart's on my sleeve. Then the next, I'm overcome with anger. And before it got to this stage, I don't recall ever experiencing anger... like... ever. From tossing my walker down the staircase. To, one day, hulking out and destroying my room and myself (still have the scar a year and a half later); the entire time, feeling like I was looking down at myself; face red, throat full of acid (... Like... I could'a lifted a car that day...) Watching myself try to destroy everything, yelling at myself, "Yo! You know YOU'RE gonna have to clean this shit up, right?" And when it was all said and done... (cause my mommma caught & stopped me)... That's when I knew, I fucked up. But she didn't yell. She just held me as I wept, repeatedly, "Please don't call the cops on me! I didn't mean it! I didn't mean it!" And right hand to the man, I TRULY did not mean it. I'd never lost my cool like that... ever. And it scared the shit out of me!
I give you this particular entry because of the perspective that was shown to me. And if someone so "close to me" could view things this way; who the fuck else is gravely misinformed?! That I chose to socially isolate myself. That I really don't want friends. That couldn't be any further from the truth! I want my life back!!! I don't want to be under the control of something that seeks to kill me. And I damn sure don't wanna have to go out in a wheelchair, barely able to speak, my full body spasming, with no control of my gross motor skills, making involuntary noises from ticks... and no one looks at you. Or they look a little too hard. Oh! And if someone speaks directly to you when you're, say, ordering food, and not to your "handler"... Mannn... that's like witnessing the parting of The Red Sea! Listen, this shit is mortifying! Especially, when the extreme symptoms pick and choose which day of the week or month they wanna shit on. THAT'S HARD TO EXPLAIN TO PEOPLE!!! Why I don't look sick and why I seemed fine just a few days ago. This is the most mortifying, undignified, journey I've ever been on. And the worst part is, it's the disease. But I can't say that b/c then I'd just be using my constantly questioned illness as a scapegoat. I'm not going out like that! Listen, that whole, me being a rock stuck in a hard place is no more. I've pretty much merged with that rock and I call us, Pride... I am Pride Rock.
And this is not a diss at all to anyone at all. I felt I needed to set the record straight as I enter into this new treatment and part of my journey. I LOVE to meet new ppl. I love to socialize. But a lot of what I'm going through is MAD embarrassing... especially if you know who I was before I got to this stage of the disease. My friends; both past, present and potential, know how to reach me. And if I'm not going through it, I will ALWAYS answer. My heart... my very big, cursed fucking heart, loves in a way that surprises even me. I'm here. I'm open. I'm still me... just fighting this fucked up demon inside so I can go on and be as great and in love with myself as I once was. And thanks be to God, I'm getting there. I am learning to do what I have with others who have my heart, and always will.-- I'm learning to love MYSELF unconditionally. At the end of the day, I'm here with this testimony and this song of survival for a reason. 'Cause, Lord, knows I BEGGED, relentlessly for it to take me too many times to count. I've accepted that this is a process. But not one I self inflicted. I will no longer feel guilty or ashamed of what happened TO ME! And the way I chose to handle it. It didn't come with a gah damn manual. It's life.
Now, so we're clear. I do not have any ill will towards anyone. I do not have abandonment issues... anymore. It is what is. But I welcome new, sincere people in my life. And yes, I will continue to shade the fake every chance I get! LOL I'm just seriously kidding. But, for serious, not everything you perceive is reality. And words and assumptions hurt sometimes. I will say, I have learned some priceless lessons in this here saga of my life. I'm no longer hiding this struggle and haven't been since the 1st entry of this here blog. And know that if you do not hear from me, I'm frying some big ass fish and will always reach out when I can. And anyone who truly knows me and my heart knows that that's a fact.
The moral of this story: We can all work on our gift, or lack thereof, of discernment. We don't know everything. And we've all done things we aren't proud of and gone down roads we never knew existed. We are not islands. We NEED each other. It's just harder for some of us to admit it.
***Shiiid... I wish I would call someone I haven't spoken to or heard from in months and ask them to come induldge me in some human interaction. I am legitimately too proud to beg. But my door is always open. I'm on the right track. Don't count me out just yet! ;)
>>To see my journey follow me on Instagram @iamTendaroni and you can view my album on facebook... "Adventures in Recovery"--> http://www.facebook.com/tyree.davis.9 <<
>>To see my journey follow me on Instagram @iamTendaroni and you can view my album on facebook... "Adventures in Recovery"--> http://www.facebook.com/tyree.davis.9 <<
KEEP FIGHTING MY FELLOW LYMIES, SPOONIES, AND CHRONIC SUFFERERS!!!! YOUR LATTER WILL BE GREATER THAN YOUR PAST!!!
Ty -- A link to your blog entry showed up in my FB feed because Carly Hresko is a mutual friend. I read it through, because it is such an authentic and heart-wrenching document, and because of my close personal experiences with lyme disease. What you have been through, and what you are currently going through, is pretty much the same awful experience that many thousands of other lyme victims are having -- dragging through their lives week after week, month after month, depressed, angry, and dead tired all the time.
ReplyDeleteMy wife Mary Jean has been fighting chronic lyme for more than a decade, and my son Corey, who is around your age, is also having a terrible struggle with it. I myself have had it twice, but luckily had the bullseye rash and was able to get early treatment.
I'm not going to make this a long and tedious comment, but I want to say that there IS hope. Your latest blog entry doesn't say what treatments you've tried, which would be interesting to hear. But listen: after years of antibiotics and dozens of other drugs, my wife finally got to the point where I had to lift her in and out of the car, I thought she was going to die. But she found a doctor (in Columbia, MD) who really does know how to treat lyme. The doctor negotiated with our health insurance, and convinced them to cover intravenous antibiotics. It was a hassle at first, but the main thing is SHE GOT MUCH BETTER, finally, enough to go back to work, and when lyme symptoms started coming back a few months after the IV treatments ended, she started them up again, and is now 80 percent improved. It CAN happen.
Now my son is being treated by the same doctor, who thinks he will eventually get better too.
Anyway, you have my heartfelt sympathy, and if you have any need for advice or referrals I might be able to help.
Yours, David
David,
ReplyDeleteCarly did mention your family, maybe a year or two ago. I knew you wife had Lyme but I didn't know your son was battling it too! You all are in my thoughts and prayers. Better days to come, for sure! I know it. Until then, our community must continue to support and lift one another up. This is a horrible disease; neglected by man and invisible to everyone but those going through it and having to watch someone they love go through it.
My hat's off to you, Sir! It takes a strong man/individual to stay the course through such a trying and devistating time.
Thank you so much for you kindness and I'm so glad your wife is improving!!! That make my heart sing.
And it's funny/not so funny, that people expect that we (Lymies and Spoonies) requires more than they can offer. When in reality, just being thought of and checked up on or spending, at least, an hours time with us is all we truly need and desire!
Keep fighting for your family!you are a man amongst men!
✌🏾️&❤️ -Ty
Oh! Also, David, I will be posting as much as possible, once to twice a week--health permitting. And my treatment, both past, present, and soon to come will be documented. Pre-Lyme Diagnosis and Post-Diagnosis... Of what I can remember. And I don't know if I mentioned that I do believe your son and I are fb friends. If not, you (if your on the book face lol) and he and your wife! PLEASE add me! Banning together in this disease is the most powerful thing we can do, as of now!
ReplyDelete💚💪 -Ty