viaA fellow Black Rose Writing author set up an amazing book giveaway. Ten fantastic stories that are on my must-read list, as well as my new memoir Hope Alive, could be yours if you enter the giveaway! You can enter via this mobile-friendly link to my Facebook page: http://gvwy.io/6mmc9pm or via the rafflecopter link below! The raffle will end June 5, 2017. Good luck!
I hope you don’t mind me calling you that. I saw your Dad use that nickname, and I’ve always loved that name for a girl.
I don’t envy what you’re going through right now, but believe me, I understand it more than most people. I’ll admit – my memoir was just published, and I didn’t even mention this in it. I focused on the struggles after my brain injuries, but this experience was just too personal, too embarrassing, and too emotional for me. I wasn’t ready to share that moment of my younger years with people. Then, I heard about you. I’ve been so busy dealing with book-related things and stressors that I hadn’t had a chance to read the articles about your disappearance…until now.
I also wasn’t ready to share this until now, but remembering the fear, pain, and uncertainty I was going through when I was in your position, I feel I must try to reach you in some way. I don’t want you to go through this alone. I know right now you’re with someone who you think loves you, who you think you can trust, but there’s still a lonely, empty feeling – because you know it isn’t right.
When I was 15 and a freshman in high school, I ran off with a man who was 20-years-old, about to turn 21. 16 years later I still – and always will, I believe – blame myself. I willingly skipped school that day to hang out with him, even took an overnight bag with clothes and movies to school, so everything that followed was my fault, right? My mother and I’m sure countless rape counselors would say WRONG, but that’s an emotional hurdle that time has yet to help me overcome.
What I do know now, 16 years after that fact, is that HE was wrong to put me in that position. He “groomed” me with the things he told me: he exacerbated all my problems at that time to make me believe I was unhappier at home than I really was, and he led me to believe he and I could have a happy, perfect little life together. He, as a grown man, knew it was wrong to be hanging around teenage girls – that’s how I met him, through a couple of my friends. He especially should have known it was wrong considering he had gotten in trouble with authorities for hanging around younger girls in his teens – apparently, they had made some accusations.
My brother and his friends were/are 9 years older than me, and I was used to hanging around with them, so that made it seem less creepy that he wanted to be around younger girls, and wanted a relationship with me. At least he was younger than my brother, I thought. I’m now married to a man who is older than my brother (they were friends when they were kids), and when I told him what transpired when I was 15 he knew exactly what that guy was – a predator and a pervert. It was because he didn’t want anyone getting wrong ideas that my husband purposely steered clear of younger girls his whole life – especially in his teens! My brother’s friends were so concerned when I disappeared because they could see the danger, they could see what my husband sees now – that it wasn’t right, even though I believed nothing was wrong.
The man you’re with has had even more time (3 more decades) than the guy I ran off with to realize that this is wrong. He knows he’s the adult in this situation, and no matter what’s going through his head at this time, he should know it’s WRONG. He’s left his wife and taken someone’s daughter. But, Elizabeth, I’m less concerned with him realizing that what he’s done is wrong, than with what you’re going through right now.
I was only gone for three days, and I know what I live with now. The pain, the fear, the heart wrenching regret for what I did to the people who loved me, the strain I put on our relationships that took so long to get over. What he said and did to me in those three days can haunt me if I linger on the memories. One thing I’ve gotten very good at in 16 years is blocking everything out. I don’t let myself remember what he looks like – it makes me sick if I do. And this is someone who I thought I loved for a time! Someone who had me convinced that if we ran away from everything and everyone, we’d have a life together.
Whatever this man has told you, it’s not going to happen. Don’t shake your head like I would’ve either…it can’t and it won’t. It terrifies me to hear this man is believed to be armed. The man I was with wasn’t armed to my knowledge, and I was still afraid. I know the family friend who eventually rescued me was armed, but that’s a different part of the story.
The fear that gripped me then wasn’t just what he might do. It wasn’t just from hearing his father come into his shanty house and scream at him while I sat trembling and terrified in his closet. The fear I had was what my parents were going to think now, not to mention all the kids at school. Isn’t this your first year at public school, after being homeschooled? Oh, it must be even more terrifying. I thought I really couldn’t go home: my parents would never love or trust me again; the kids at school would all know and call me a slut; my brother and his friends would look at me differently, and think I was an idiot.
I laid in his bed at night fearing what my parents were going through (my dad, who’d already had 2 heart attacks, had just recently suffered a heart scare before this), but I feared even more so what a reunion would be like. I knew I wasn’t really happy there in that hovel with him like he told me I was, but I was so scared of the repercussions of going home.
What finally made me call to say I wanted to go home? My brother raced cars at that point, and when I spoke to his roommate and friend, Robert, by payphone he told me they wouldn’t be going to the track that weekend if I didn’t come home. That had been my first idea. I told Rob I would have this guy drop me outside the gates at Texas World Speedway before that weekend’s race, and he told me they wouldn’t even be going unless I came home. That prompted me to have this guy drop me at a busy shopping center, where Rob would pick me up. On the way there, the guy told me he might kill himself once I was gone. Like everything else he ever told me, it was bullshit.
I stayed with my brother, his girlfriend, and their friends until it was time to go to the track. None of them hated me, none of them looked at me funny, and none of them thought I was any dumber than they had before I left (c’mon, I’m everybody’s little sister, so I was already an idiot to them). They hated the guy I ran off with, but they loved me more than ever and were happy to know I was safe and home again. They were sorry I had gone through something no teenager should go through, but they loved me.
When I finally did see my parents at the racetrack, I was so nervous. I was in pain (physically and emotionally) when my mom ecstatically grabbed me and hugged me through tears. We would get through what was to come, she was just glad to have her baby home. They made me go to a counselor a few times, but only time healed what damage was done to our relationship.
I will never forget being in my parents’ room when I saw my Daddy cry for the first – and only, until recent years – time. He was overcome with emotion over what had happened. He sobbed, hugged me and told me just wanted me to be his Baby for a little while longer.
I was heartbroken. I wanted to scream that I was still, and always would be his baby. I felt so awful for making him feel otherwise that I just sobbed with him. My parents still loved me, they were just so scared, and I was so remorseful for what I had put them through. This is another reason I never talk about this – I break down every time I think about that, and I’m in tears now. It certainly isn’t any easier to cope with after a brain injury or two.
What I want you to know, Elizabeth, is that you’re not alone. You don’t have to go through this alone, and you don’t have to go through the end of this alone. I know the man you’re with will seem even scarier when it comes to thinking about going home – he’s older, bigger, stronger, and more armed than the guy I was with. But, if you’re in public with him, there’s less he can do, unless he wants to get tackled and arrested there on the spot. Scream, make eye contact with someone, mouth “help,” or do something…but do something before it gets any worse.
There’s a lot of healing that will need to be done, and I know it looks daunting and terrifying, but I think all involved will be better off for it. I don’t claim to know what your home life is like, but perhaps in overcoming this together, your relationships with your family will get better.
I had 2 friends meet me and walk into school with me my first day back. The rumors had spread while I was gone, but my friends gave me strength. I also knew the principal, teachers, and counselor only wanted to help me – they had been so sad and scared for my parents when I left. There will be nasty people who say awful things, as there always are, especially with kids, but turn to those you can trust, who will be your supporters. I’m one of them, if you want me to be.
They aren’t the only ones, either. You and I weren’t the first teenagers who ran off with someone because they groomed us to think it was a good idea – that’s what predators and pedophiles do. There are more out there than just me who have been in your shoes. We all want you to come home, and safely, because we know the longer this goes on the worse, and more dangerous, it becomes.
Please find a way to get help and come home, so you can begin the healing process with the ones who truly love you and are pained by your absence. You don’t have to go through any of this alone, and if you want someone to talk to who has been there, I’ll talk and cry with you. You can always reach me at email@example.com. You’re not alone, Izzy – please come home safe.
With all the love of one survivor to another,
Jessica “JP” MacFarland
Between you and me, here's what I really wanted to send the publisher for the Author's Bio:
"J.P. believes what's most important in life is to crush your enemies, see them driven before you, and hear the lamentations of the women."
Hello everyone!! I sincerely hope you are enjoying a fantastic start to your 2017! I have been running (or, more accurately, hobbling) around like a chicken with its head cut off, hence my absence from my blog for an extended period. Aside from the fact that I simply find it truly mind-boggling that anyone would actually give two shits about what I have to say, I have been working non-stop on final edits to my memoir because…drumroll, please…a publisher contacted me right before Thanksgiving to let me know they had accepted my manuscript!! Needless to say, that was a fun Thanksgiving dinner!
After over eleven years of working on this and countless revisions, my best friend Emery and I were still able to find some silly typos. Spellcheck is worthless when it comes to fudging up “foot rub” with “food rub” (really?!) and typing “that” when you mean “than.” Fortunately, one more pair of fresh eyes took a look at it and really helped me get it polished up!
The contract states that the projected release date for my book is April 13; however, after asking for and receiving a much-needed extension in order to get everything turned in, they may push that release date out a little more. My mom’s birthday (and my sister-in-law’s, actually) is April 26th, so I would love it if the book was released by then, but I ain’t exactly in any position to be choosy. I’ll be thrilled whenever the big Release Date happens!
My other best friend, Jaena – who has a WEDDING on June 5th in CANADA, I might add – graciously accepted my request to paint the cover for the book. We picked a picture she had taken out of an airplane window that we both thought had relevance to the story. The plane had just risen above a storm, and the sun was shining through the clouds, with the storm underneath and behind it. We decided she would paint that, and I’ve been so tickled that she didn’t mind taking on the added pressure.
Painting (or any art) can be cathartic for her, but I know it got frustrating as well, as it had been awhile since she’d had the chance. I knew she could do it though; she’s always been such a talented artist. She did a couple paintings with acrylics, then moved to watercolor when she got frustrated with the clouds. I wound up with too many paintings to decide, so I sent everything to the publisher and let him make the call. He ultimately decided to use the actual photo she had taken for the book’s cover, and we’ll use the various paintings for the e-book chapters, to give it more color. I’ve been incredibly blessed by these lifelong friendships I’ve made over the years.
While working through the notes and edits the editor sent me, I went on the hunt for “blurbs” for the cover. I had four wonderful people read the manuscript (pre-edited), and I received the most ego-boosting blurbs from them!
I’m also blessed that my chemical engineer of a father-in-law took up photography as a personal hobby. With his state-of-the-art camera and fantastic Photoshop skills (there was that one stupid blemish that didn’t want to stay covered up) we took some pictures for a suitable headshot. This, of course, had called for me finally getting my hair done after a year of letting it grow out – something that couldn’t have happened without the aforementioned awesome friends and a spectacularly sweet stylist. I just love alliteration, don’t you? Sure, ya do. I’m always sad to see my long, grown-out redneck hair go, but I really needed my roots touched up and my ends trimmed, to make it fluffier!
I’ll be waiting to hear whether the book will still be released in April, but be on the lookout this spring for a memoir titled Hope Alive: A Coming of Age Tale Brought About by a Back-handed Bitch-slap from Karma. I’m excited beyond explanation, and hope that through this book I’ll be able to help not only other survivors, but a variety of people.
The book in itself has been a lesson on never giving up hope. You must never give up when trying to have something published! It can seem so defeating every time you get rejected by an agent or publisher, but take every rejection as another feather in your cap on the path to being an author.
I have to give thanks to the website authors.me, for helping me to get my manuscript in front of the right people, while still feeling that it was safe. I highly recommend that website if you’re looking to publish anything. They will connect you with agents and publishers looking for your genre, and can even help you find editing services (although the latter at a charge).
The book also wouldn’t be what it is without the sage advice and editing expertise of Christopher Benz and Elliott Niblock. Thanks to them, my work improved immensely!
I’ll leave you to your day, I’m just so ecstatic to announce that everything is FINALLY IN THE HANDS OF THE PUBLISHER!!!
This has been an interesting weekend for me, to say the least. So many things of import have taken place…well, of import to me anyway. On Saturday, October 29, my cat Bucky, who I had when I got hurt, turned thirteen years old! For a girl whose first cat, Sparky, lived almost to his nineteenth birthday – I got him when I was three and he didn’t pass away until after I was out of the hospital, and after that fateful twenty-first birthday – I expect Bucky to live many more years.
Bucky broke my heart because after I got out of the hospital, and we had finally found a house, he couldn’t come live with us. Why, you ask? Because he had tried to kill my mom’s cat Phoebe. Phoebe was enough of a spaz, so that was a no-no. Fortunately, in the time that Bucky and I had lived with my brother and his wife, he and their cat Cooter had gotten to a point where they could tolerate each other. I believe “tolerance” was Cooter’s highest form of affection. Mike could force Cooter to love him in small doses, but as soon as it was over he would shoot out of Mike’s arms. Anyway, when I got hurt Mike and Tiff immediately stepped up to offer their home to Bucky. They love Bucky…there’s really no way you can’t, as long as you don’t mind earning scars from those talons. I have several from our years together.
When I first got to visit with everyone after I got out of the hospital, they were all in Tiff’s parents’ townhouse. They’d had to carry me up the stairs to the living room, and Mike brought Bucky up in his carrier to see me after dinner. Even with his favorite Greenies treats, Bucky refused to come out of the carrier or even look at me. I cried in the car on the way home, sad because my baby hated me. Then Mike called, knowing I would be upset, to tell me a story about his first cat Tiger doing something similar and breaking his heart. It was just the situation Bucky was in, and someday we’d be back to normal.
Fortunately, 11 years later, that’s very true. Now when I see Bucky he plops down to show me his belly, his way of showing affection, and rubs on my hand and lets me love on him until he’s had enough. Many times I’ve been over at Mike and Tiff’s and he’s jumped up next to me on the sofa, a true sign he loves me. There can’t be many people there for that to happen, though.
And on the same day that funny boy turned thirteen, I went swimming with my nephew Christopher (Bucky’s brother…it’s a strange family). This was a really big deal for me! It was only the second time I’d been in a pool since I got hurt (something I loved doing in my past life), and the first time to really stay in the pool and swim around. It was also the first time I finally wore the bikini I bought last year…and I was about thirty pounds thinner than the last time I’d worn a bikini!
I had a great time playing and swimming around with my nephew, and I learned something about my injured brain that I never could have discovered until I got in the pool. Before I got hurt it was second nature to me – I’d go under water and I’d immediately blow through my nose, to keep water from going up my nose. Well, that second nature is not only long gone, but it’s incredibly difficult for me to blow out my nose once under water. That pool was basically one giant neti pot for me, because more often than not, when my head went under I would be unable to blow out my nose. I’d try, but water would go up my nose and I would have to resurface, letting the water drain back out. I kept forcing myself to try though, and I’ll keep on doing it…I’ve had to retrain my brain before, it’s just been awhile. I’ll retrain that sucker to do this too! I don’t know how long it’s going to take though…and even Texas’s pool weather goes away soon, although we do get to keep ours longer.
Yesterday, October 30, marked 7 years since my first date with my husband. Seven years since I opened the door to lay eyes on him for the first time in over two decades. We were reminiscing last night about that first date. I had been sitting at my computer desk (like I am now), knowing he would be there soon, and feeling a swarm of butterflies in my stomach. He remembers seeing me sitting at that desk through the front door, and watching me walk towards it after he rang the bell. What ensued was the best, and easiest, first date either of us had ever had. We already knew how much we had in common, and as we ate dinner and chatted the list of similarities only grew. Later he showed me just how comfortable he was with my disabilities by giving me a foot rub and intertwining my injured fingers with his, so he could hold my hand. He was fascinated by the spasticity, but very sympathetic at the same time, wanting to do whatever he could to make it better. I could tell he was special.
The next night, Halloween (7 years ago today), he came back over and we bonded even more, cackling over the inane genius that is “Freddy Got Fingered.” He continued coming over every opportunity he got, and we quickly realized that something had been put in motion by a force greater than us. We had met the person we were supposed to be with…we were on a preplanned track and now it was really going. Less than one month after that first date he told me he loved me, and one month after that he proposed on Christmas. It was a magical courtship and it’s been a wonderful seven years. I just can’t wait to see what the next seven, or 107, years bring us!
The final reason that today, October 31, is so important to me is this: eleven years ago today I was finally released from the hospital after 134 days in a row, two massive hemorrhaged brain aneurysms, and four brain surgeries (ALL WITH MY MOTHER)! I still remember that morning, and the sleepless night before. Four years before Scott came over to take me out for our first date, I lay in my hospital bed, knowing that I would finally be released the next day. I would finally get to try to move on with life, and I would finally be reunited with my pugs Ozzy Boo and Delmar, whose picture had stayed on the wall of my hospital room, reminding me what I was working towards. All through that night, however, I laid awake paranoid. It took me forever to get to sleep because every twinge I felt in my head, or change in pressure, caused a panic. I was just sure a third aneurysm would strike that night, forever keeping me from leaving the hospital and being normal again.
What I couldn’t know that night was that in four years what seemed impossible would actually happen – a (somewhat) normal man, a good man who had not known me before I got hurt (not including those childhood years) would fall in love with me and want to spend the rest of his life with me. All the work ahead of me would not be in vain…I would see my dream come true.
Mom and I were stopped by a sweet woman in Kroger the other day…on Bucky’s birthday. She said “I’m so sorry to ask, but did she (indicating me) have a stroke?” She apologized if she was being rude, and we quickly reassured her that she wasn’t. I love sharing my story now. She asked because she was on the phone with her boyfriend, who was recovering from a stroke, and she was trying to get him through therapy. I told her that I’d had not only one, but two, caused by brain aneurysms. She was trying to get her boyfriend to talk on the phone with her because he was dealing with aphasia in the wake of his stroke, something I didn’t have to deal with too much. I wish I could have talked to her more, but I’m so glad she stopped me while she was on the phone with her boyfriend, because I might have been able to offer encouragement to him. She was telling him, as I was standing there, that he should see this girl she was talking to - she’d had two strokes and was up and walking with her cane. I said “You got this, you’ll get better!” I was so happy that God put that lady in my path, so I could share my story with someone at the perfect time they needed it. I only wish I could talk to her more. If you’re the lady from Kroger in Texas City…let’s talk!!
No matter how dire it looks, lying in your hospital bed or trudging through rehab, you too will see normality again, and in time you’ll see your dreams come true. It takes hard work and faith...but don’t give up!
Now everyone go have a fun-filled and safe Halloween!!! I just got back from the best Halloween I’ve had in 10 years, going around the neighborhood with my nephew!
This is always a depressing weekend for me – the United States Formula 1 Grand Prix. When it was held in Indianapolis, it wasn’t quite so depressing. It was in another state, and it would take an actual “trip” to get there, probably involving flights. But for the past five years, it has only been a few hours’ drive away. It’s so close it’s ridiculous, and yet I still end up watching it from home.
It boils down to the fact that depression over the loss of racing in general since the strokes has never ceased for me. Maybe I really could have made it as a driver, maybe I couldn’t. I certainly had the confidence that I could and would, but we’ll never know. I might be able to get over that eternally unanswered question if it weren’t for the fact that I feel completely cut out of the entire world of racing.
Since getting hurt I haven’t even been to a track to walk around the paddock before a race, or sat in the stands to watch club racing. I miss the days when the track was a home away from home, and we were there almost every weekend. Even when I wasn’t getting to drive, I just loved being a part of my brother’s pit crew, and being there. I loved walking around and looking at cars, watching all the different groups race. The track where we practically lived, where I participated in 2 of my 3 racing schools – Texas World Speedway in College Station – is gone. It was heartbreaking to hear it was really closing down, and I would never get to go there again.
We used to have tickets to every race that would be in the general vicinity, back when I was a kid and everything was handled for me. I always loved the weekends when we had the Supercross in Houston AND the NHRA drag races in Baytown. The first usually fell on Saturday night, and the next day I’d be bright-eyed and bushy-tailed, ready to sit in the sun for hours and walk around the pits as the fumes of Dragsters and Funny Cars stung my eyes and nostrils. I loved it. I couldn’t get enough weekends like that. Then there was the Houston Grand Prix, back when that and CART were still a thing. For that race we always had seats, and usually knew someone with a tent as well. It was an awesome time growing up.
We were at Texas Motor Speedway for the inaugural weekend – a Nascar race and an Indy race under the lights, the latter of which they discovered some problems with. That was a thrilling weekend – I got to see THE INTIMIDATOR in action! I still remember everyone standing up and cheering when he would pass by. Depending on what type of racing I had seen that weekend, that’s what I was going to race when I grew up: I went from dirt bikes, to Nascar, to Indy, to dirt bikes, to GT cars, to Formula 1. Although I’d never been to a Formula 1 race in person, I had always watched, and proudly dreamed that I would be the first woman to race in Formula 1. When I got hurt, I told everyone in the hospital “I always said I would be the first woman driver in Formula 1. This is no problem – now I’ll be the first HANDICAPPED woman driver in Formula 1!” Yeah…easier said than done.
Nowadays it comes down to my injuries being less of the problem. Whether you’re a driver, a team owner, or just a spectator, there is one thing you must have to participate in the racing world: MONEY MONEY MONEY…something I haven’t had much of in a while. If I can walk around Disney World and not need a wheelchair, I can walk around racetracks just fine. I’ll need to sleep that night, but I’ll be fine. It’s the ever-annoying fact that it’s just too damn expensive to get tickets. For the F1 Grand Prix in Austin, you have to pay hundreds of dollars just to friggin’ PARK!! That doesn’t even include finding the cheapest tickets you can find (good luck), a cheap hotel room for the weekend (again, good luck!), and paying for the gas to get to Austin and back.
Once my parents couldn’t pay to make sure we went to every racing event, I stopped getting to go. Not only did I not have the master (Dad) making all the arrangements, but I no longer had the money. What grates on you is seeing people you know getting to go, people who could give half a crap about going compared to you. And NO, I’m not talking about my family that’s there – obviously they care as much as me. They’ve gotten to go before, though. This is one item on my Bucket List that really gets to me every time I miss it. I keep telling myself that someday I’ll make it to an F1 race in Europe, and that’ll be so much better…but that only dulls the disappointment so much. It doesn’t help to have a husband who really doesn’t care about racing, and quite frankly finds it to be too loud in person. I’d get him some headphones or earplugs if we got to go, though. No excuse that weak would keep me from an F1 race. I’m sure if we got to catch one while we were in Europe he couldn’t argue with me too much.
I almost dread this weekend now – it’s a reminder that I’m as far outside of the racing world as someone who was never in it before. It’s a reminder that I’m handicapped and poor…that I’ll never get to race again…and that I’m left out. It’s just depressing. I miss that life, and it’s depressing.
The one bonus about tomorrow is that I’ll have mimosas with Mom while we watch the race. Normally F1 races are so early that I drag myself over there and just want coffee. But tomorrow’s race won’t be on until 2:00, so I’ll dull the pain and disappointment with booze.
I can’t wait to get to Heaven. First thing after I catch up with loved ones, I’m taking a Porsche around the Nurburgring, then a Corvette around Laguna Seca! Then, a Formula 1 car around every F1 track! Until then, it’s mimosas with Mom tomorrow as I grudgingly watch Formula 1 race three hours away from where I’m sitting.
Depression. Anxiety. Suicidal thoughts. All three were things I had dealt with in my life before the two hemorrhaged brain aneurysms, and all three returned in force in the life after.
Depression and anxiety can be so frustrating, not only for the horrible, uncontrollable thoughts they flood your head with, but also the way in which people who don’t suffer from them respond to you.
“Well, you shouldn’t feel that way.” And of course, there’s always the shot-to-the-chops-deserving “Snap out of it!” Seriously…if someone ever says that to you, just smack ‘em in the face. They’ll be lucky if it’s open-hand.
Even my husband’s attempts recently were frustrating to me. He tried what I always try to do myself – keep my mind on others, and the suffering they’re going through. I have a younger cousin who is helping her husband fight leukemia, keeping her away from their three children. Recently she’s had to hear her daughter crying on the phone because she missed her and needed her so badly, and she missed her youngest son’s first steps. On top of that, this horrible disease keeps them up-and-down. At one moment it looks like he’s in remission and going to get over this…the next he’s throwing up, feeling awful, and back in the hospital. As of yesterday, he is in the ICU, intubated (on a ventilator, like I was), and not doing very well. We all keep praying for him and my cousin, hoping he will pull through this. It’s helping because he’s doing better today...it’s just so up-and-down for them. Whenever I start thinking about what my cousin is going through I start tearing up. I’m going to go see them tomorrow.
If it weren’t bad enough that a father of three were fighting that awful disease, my cousin’s friend Deborah is helping her six-year-old daughter to fight leukemia. SIX YEARS OLD! That’s why those St. Jude’s commercials are always so heartbreaking: we hate to think of such a horrible thing befalling an innocent child. This little girl Jessi is beautiful, a fighter…the epitome of strength. She will NOT give up, prompting the hashtag #Jessistrong to catch on with her many supporters. I have never met them, but I have prayed for her and her mother daily, and been brought to tears by their story many times. I cried the most the time I heard that Jessi was scared and crying that she wasn’t ready to die yet. I don’t know how a mother stays strong when she hears her daughter like that. But Jessi WILL NOT give up…she WILL NOT stop fighting. She would rather yell at God, warning Him not to give up on her, than give up on herself. She is an inspiration to everyone who comes across her. I encourage you to check out the Facebook page her mother set up, and to pray for and help support her through this fight. Her page can be found at https://www.facebook.com/groups/712546025544301/.
I keep my cousin Kathy, her husband William, her friend Deborah, and Jessi in mind when I start getting down on life, and feeling like I don’t want to be here anymore. I try to think of Todd Crawford, whose wife Lisa Colagrossi wasn’t as lucky as some of us are, and who was killed so suddenly by a hemorrhaged brain aneurysm. Todd and their two boys are left to get through this life without her, although she will never be far. One thing I pray when I pray for them is that they always be able to feel her presence with them, right alongside Jesus, and that they be able to draw strength and comfort from that. My heart breaks for them, though. Their lives can make me feel very unworthy of the two miracles I received. Theirs, and the fifteen-year-old boy I heard about soon after being released from the hospital. I will never forget him, even though I don’t know his name. He was helping his mother to move a piece of furniture. Suddenly he said something like, “my eyes hurt,” and fell down dead from a hemorrhaged brain aneurysm. That’s the way I heard the story from the person we were living with at the time – they worked with one or both of his parents. I could not get him out of my mind. How had I just survived two massive brain aneurysms hemorrhaging, when this kid five years younger than me (and probably in much better health) had been ripped so suddenly from his family by one? It seemed so unfair, and it put into perspective for me just how big of a miracle God had granted my loved ones. Not only did they get to keep me, twice…but they got the real ME back. So many others don’t even get the first blessing. It was a humbling and saddening realization, and one that on many days can help me out of my funk.
On other days, I go further out of my own circle – to the parents living on the streets with their children, wondering how they will feed them and keep them dry and safe. To the homeless old man who’s been on the street so long he can’t even remember a better life. To the people living in shanty villages in India, still managing to sing and find reasons to smile. If those people can live shoulder-to-shoulder, sleeping on dirt floors, and still sing…why can’t I?
The problem that people without depression and anxiety don’t understand is that it is a serious illness, and something you cannot just turn off. Many days, thinking about the plight of others will do the trick…thinking of Jessi’s strength will make me feel guilty enough to pick myself up. But other days, I just can’t shove the dark thoughts out. That’s what happened recently when, after a few days of me just feeling down in general, my husband tried in vain to remind me of the struggles others are facing at this moment that I am not. I had him, he reminded me, a home, plenty of food in the pantry, and a big family that cared about me. I had so much more than so many others.
I told him, and not for the first time, “I want you to know, I thank God for you every day, and you mean everything to me, so I don’t want you to feel bad when I get depressed,” but, I explained to him, some days all the positive thinking in the world just can’t pull me out of my rut. The dark thoughts just keep creeping back in and clouding up the positive ones.
He tried before to tell me to do a “Star Wars shift,” to move my mind from the bad thoughts to happy thoughts. You know how Star Wars shifts from one scene to another…the camera just pans over? That’s what he’s talking about. He deals with anxiety, and can be prone to panic attacks, so when his mind can’t get off something, he “Star Wars shifts” his mind to a happier thought. I’ve tried this before, but the feelings of depression can be so deep and dark inside my head…I’ll “Star Wars shift” to something else, but my mind jerks it back to the other scene, before the camera even has time to focus on the better thought.
When I couldn’t get out of my funk for several days, I decided I’d devote my next blog post to dealing with depression, especially in a life after strokes, or more specifically, after hemorrhaged brain aneurysms. In that case, not only has there been blood on your brain, causing brain damage, but likely your whole way of life has been changed, and it’s hard to come to terms with it.
I spent the last few days researching depression after aneurysms, and while much of it was information that I had already experienced myself, one fact caught me by surprise. While researching depression after strokes on webmd.com, I found that while many people become depressed after a stroke or “mini-stroke,” up to 2/3 are not getting the proper treatment, according to researchers in the journal Stroke. Chad Miller, MD, an associate professor of neurology and neurologic surgery at Ohio State University, said “Depression needs to be added to the checklist of things that [stroke] patients need to be evaluated for.”
I just couldn’t believe that it wasn’t already at the top of the checklist…not only is it not at the top, but it isn’t something all stroke doctors even check for, although Miller says they are all aware it exists. “Each stroke doctor is somewhat aware of this [risk], but it may not be one of their priorities,” Miller says. Often, stroke specialists are more concerned with addressing risk factors to prevent another stroke from occurring, as well as the patient’s rehabilitation. Well, I am here to say that depression is something that needs to be addressed early on with each stroke and aneurysm patient, as they may not realize it…but it’s coming. And depression could be very hazardous overall to one’s rehabilitation, as well as their ability to get on with life overall.
I was diagnosed with clinical depression at the age of seventeen, following a breakdown in my junior year of high school. After walking around the house like a zombie for two weeks, refusing to go to school, my mother took me to her psychiatrist, who referred me to a psychologist next door so that I would have someone to talk to. After a few visits, they determined it would be best for me to get out of high school. Impressed by the maturity I already exhibited, my psychologist said “You’ve gotten everything you’re going to get from there, you just need to move on.”
My parents spoke to my principal, and were surprised to learn that I was one of at least three girls who’d had an emotional breakdown that year. We got everything worked out – I signed up for extra classes and summer school to finish up all the necessary credits, and we were able to use my 3 racing school experiences to fulfill my remaining PE credit. I wound up graduating the summer after junior year, going to England and Scotland for two weeks, and then moving into my first apartment. Things went well for about a year, but around my nineteenth birthday (a year before the first hemorrhage) it was kinda going to shit again. My doctor switched my medication from Lexapro (which had worked fine for a long time) to Prozac.
When I was Life Flighted ( Life Flit? Life Flown? I dunno…) to the hospital, everyone had been so focused on saving my life that my antidepressant medication never came up. It wasn’t until two months later, after the second hemorrhage, when I was lying in the neuro ICU pod, literally losing my mind, that the subject came up. I had been diagnosed with “ICU Psychosis” – defined as “a form of delirium, or acute brain failure,” brought about in my case my medications and trauma. I was distraught, confused, terrified, and surrounded by the horrifying sounds of groaning patients, and the maddening out-of-sync beeping of machines.
My one ray of sunshine in that dark place was the short visiting times when my parents could come in and see me. Mom was in there one day, explaining to me why I was in there again, and that I’d been diagnosed with ICU psychosis. In a rare lucid moment, I reminded Mom that I had been on antidepressants for three years before this happened, and no one had given me anything for two months. Hadn’t we been told never to abruptly stop taking them? I was sure that wasn’t helping.
After relaying that information to my doctor, she put me on Zoloft. I at least thought that was hilarious: “I’ve now been on all the stereotypical ‘crazy’ drugs!” I leveled out some after that, but still had my ups and downs. I was confined to a hospital bed, half paralyzed, and my life forever changed – there were plenty of downs. I was just happy when I was finally out of that neuro ICU pod again. But there were always moments when I’d remember the life I had known up until that point, now seemingly so far removed from where I was. I would hear people running back and forth down the hallway, driving me crazy. Did they have any idea what they were taking for granted? To someone who couldn’t even walk at the time, it crawled all over me. At times I’d hear about what my friends were getting to do and feel left out.
This was just my experience as someone who had depression before their injury. Many people go in with a stroke or aneurysm without depression, but will wind up suffering from it because of the trauma to their brain and drastic changes to their way of life. When your whole way of life changes, and you find yourself unable to do so many things, it could cause the sanest person to sink to the lowest depths.
The study which was reported in Stroke took place about 3 ½ years ago. It included 1,450 U.S. adults who had suffered a stroke, as well as nearly 400 who had a TIA (Transient Ischemic Attack, a.k.a “mini-stroke”). The conclusion was that depression does follow strokes and TIAs. About 18% of the stroke survivors and about 14% who’d had a TIA were depressed three months after their hospitalization. The depression also stayed with them: About 16% of the stroke survivors and 13% who’d had a TIA were still depressed one year after their injury. The saddest part is the lack of treatment in many of these individuals. Nearly 70% of people with persistent depression were NOT being treated with antidepressants at either the 3- or 12-month point, according to the researchers. “There is a stunning rate of undiagnosed depression in this group,” Miller said.
I’m somewhat torn on this, as the older I get, and the closer I get to trying to have babies, the less I want antidepressants in my life. When my husband and I start trying to get pregnant, I will be getting off of my antidepressants, as I do not want to take any chances, considering all the studies that have come about in regards to antidepressants and birth defects. I have a good friend from high school who was going through her own personal hell that I couldn’t even imagine during that aforementioned junior year. She had been taking her own mental health cocktail for years, but about five years ago (with help from her doctors – NEVER do this without the knowledge of your doctors) she was able to wean off of them. She no longer wanted to be numbed…she wanted to feel again. She made many lifestyle changes to help her deal with her depression, and she’s doing (and looking, I must say) fabulously. When bad feelings start creeping in, she hits the gym or takes her dogs outside to get some all-important vitamin D. She works out practically every day, or does something to get her body moving and endorphins raised. She’s very active and living a much healthier lifestyle, which helps her to deal with her feelings as they come along. She’s also gotten very good at noticing and identifying her feelings, allowing herself to feel them, and dealing with them in her own way. She’s an inspiration to me, and I’m really hoping she can help guide me to do the same, as I want to make those lifestyle changes before I start making babies!
All of that being said, however, there was a time when I could not have even considered getting off of my medication – I was already too close to the edge. I fought suicidal thoughts back in those high school days, and was no stranger to cutting myself. After I got hurt, the suicidal thoughts came back with a vengeance. If I thought I had something to cry about in high school, it was much worse after two hemorrhaged aneurysms. Dealing with having the same personality, loves, and dreams, but only half of the use of my body was incredibly traumatic. I’m sure that is what causes depression in most aneurysm survivors. I found it interesting, and understandable, that the study found that depression was more likely to last in people who were younger, were more disabled by their stroke, and who were unable to return to work three months after their stroke. Hey! I hit the trifecta!
My first aneurysm struck – as you know – the day I left my teens behind and turned twenty. Man did those twenties start with a bang! And it took a long time for them to get better. Having been more physically disabled by my two strokes, my brain still functioned (essentially) as it had before. I still told my body to do things, and wanted to be able to do things, but I couldn’t. Having the ability to do things you took for granted for twenty years taken away from you hurts almost as much as it infuriates you. On top of all that, being so weak and atrophied, and unable to walk for the first couple of months, made it impossible for me to return to school for over a year.
The idea of work was, and basically still is, impossible. The way in which my mental faculties were affected by the strokes came in the form of what is called emotional lability – defined as “a condition of excessive emotional reactions and frequent mood changes.” This often includes uncontrollable fits of laughing or crying, which I have (somewhat) under control. Right after I got hurt, though, I couldn’t control my crying at all. Anyone at my Grandma’s funeral that December could tell you how I sobbed loudly in great, heaving wails. I will still hyperventilate when I do begin crying uncontrollably, but it’s not as bad as it used to be…I can usually calm myself down. The biggest factor of my emotional lability that keeps me from working is the inability to deal with stress: something a Social Security worker learned firsthand when I became flustered and couldn’t stop crying. Fortunately, my mom was out in the waiting room, and she was able to call for her to help me explain.
When I think about my secretarial jobs before I got hurt I think of answering multiple phone lines, keeping up with who was where, transferring people, taking messages, copying, filing, helping engineers put packages together, typing, and lots of walking up and down the hall. If I tried to do that job now, I think I’d have a nervous breakdown and collapse into screaming cries when a second or third phone line rang.
The changes in your emotional capacity are another way in which you feel weird and different from others, and feeling less capable makes you feel so much lesser than others. You feel so isolated. This brings me to the next valuable information I learned while researching.
My previous information came from studying depression after stroke on www.webmd.com. The following information came from the Brain Aneurysm Foundation, which can be found at www.bafound.org, and it covers depression after aneurysms specifically.
According to the Brain Aneurysm Foundation, depression is common to all survivors, and it’s important that you openly share your feelings with someone close to you, as well as with a medical professional who understands your condition.
While it IS very important to share what your feeling with those close to you, it’s having to depend on others as you recover, and losing your sense of independence, that can cause you to feel so depressed. It chips away at your confidence and makes you feel like a child again.
I had just gotten myself where I was really independent. I could live on my own, I’d been in college, I’d had a job. I went out with my friends, did whatever I wanted, and had to answer to no one. Then BAM! I’m thrown back into dependency on my parents. There was a time when I couldn’t even get out of bed to use the bathroom without Mom helping me transfer into my wheelchair. At least, once I started using a bathroom. Let’s just say there are some very humiliating aspects to recovering from a brain injury…one involves having to regain control over your bladder.
Another part of your new reality that makes you feel less capable and, let’s admit it, inferior to others, is the fact that your daily activities are now affected by mental and physical fatigue-ability. This was a BIG problem for me, and still is from time to time. The Brain Aneurysm Foundation even perfectly identified the things which can frazzle me most: “Intolerance to being rushed, to groups of people, to small children, to lack of order and routine, and normal sound levels.” Although I must say, sitting in between a drummer and a bassist’s amp while a heavy metal band practices will help you get over any sound issues. It also didn’t hurt that I was raised around racecars, dirt bikes, and race tracks. The noises that overwhelm me come from being surrounded by too many people.
I definitely can’t handle being rushed – I react by getting angry. More than once I’ve snapped at Scott to “just go without me,” or threatened “THAT’S IT! I just won’t go!” And social situations, especially those involving large groups and small children, are something I can only tolerate for a short time. My family knows I will often be leaving the party early, as the noises and people will start to stress me out and mentally exhaust me, which leads to physical exhaustion. Sometimes, if I’ve had a few glasses of wine and have stayed for too long, Mom will come over and ask “Do you think you’re over-exerting yourself?” Usually this is because one eye is starting to droop from fatigue, and she can tell I need to get some rest.
And malls? Are you kidding me?? One of my favorite pastimes from my former life is now something I truly hate doing – nothing can make me want to go on a rampage quite like having to navigate morons at the mall. Once a kid screams at the top of their lungs it’s time for me to leave, lest I get in a fistfight because I offered unsolicited parenting advice.
I definitely notice my depression is higher when I have a lack of order and routine. That’s why I always prefer to be in school - despite the stressors it adds, it gives me a routine. I haven’t been back in a few semesters, and I’m sure that’s not helping my depression. I have no real routine right now, and that’s part of my problem.
As the Brain Aneurysm Foundation tells you, “patience and time are your two best allies to the success of your recovery,” and “know that it gets better over time.” That has certainly been true for me. About 2 ½ years after my injuries I was able to move into my own apartment, and since then I’ve managed to keep up a sense of being capable of independence. Over the past eleven years, many of my emotional problems have also improved, although the emotional lability may never go away. Depression, anxiety, and an inability to handle large amounts of stress are what I still struggle with.
A big part of emotional lability is losing control over one’s emotions. Most survivors will experience at least temporary loss of control over emotions. In some cases, like mine, the brain has been injured by blood, which can cause changes in one’s emotional state. One way my family was blessed to get the real “me” back was that it didn’t change my personality. I saw a true crime story where a man who had been beloved by everyone had a stroke and it completely changed his personality for the worse. In the end, he became paranoid and wound up killing his entire family and then himself. It was very sad, because the real “him” had been lost to the stroke. Fortunately for my family I stayed the same [enter smart-assed comment from Dad here], although I did suffer other emotional issues. Loss of one’s emotional control “can manifest itself in anger, frustration, and lashing out at oneself and others.” The Brain Aneurysm Foundation warns that confusion about the trauma is common, so it’s important to talk about it with others. If it becomes too much to deal with yourself, they (and I) urge you to seek counseling, especially with someone who understands your situation.
Soon after I got hurt, I could get so mad I’d fly off the handle at someone, then immediately burst into tears because I felt so bad for doing it. Many things could cause me to burst into tears, and as I said I could not control my crying, or rather, wailing sobs. I never thought the inappropriate laughing was a problem…to me it was just funny! It can be a problem, however, when someone’s trying to tell you something serious, and you just sit their grinning like an idiot, trying not to laugh. I hate it when that happens. I think it’s just exacerbated for someone who always laughed and smiled as a nervous reaction.
All of the things I have referenced going through can cause changes to your self-image, self-confidence, and overall self-esteem. Having new physical and mental limitations that you didn’t have before, whether they make you dependent on others or feel less capable of handling tasks, can do a number on your self-esteem. Any changes to your physical appearance can add on to that. Until I met my husband, I really felt like all anyone saw when they looked at me was the drawn-up arm, the limp, and the cane. I felt like an ugly, lumbering, clomping Frankenstein, and as a girl you can only imagine what that did to my confidence. For a long time, I thought feeling pretty was a thing of my past, but over time I did get (some of) my confidence back. I have to credit my husband for a lot of that…he makes me feel more beautiful and capable than I think I am.
You are never any less capable of living a normal life than you were before, it just takes time to get used to the “new” you, to your new limitations, and to find ways to work with them. I’m still finding new ways of doing things eleven years down the road. It takes time to heal and adjust your surroundings to accommodate you.
Lastly, I want to briefly talk about sleep issues and loneliness. After suffering an aneurysm, many people have changes in their sleeping patterns. Some can’t sleep at all and develop insomnia, while others seem to sleep all day. I fall into the latter category. Between the initial trauma, my many medications (including seizure meds and muscle relaxants, which can knock you out), and exhaustion from the toll my spasticity takes on me throughout the day, I don’t usually have trouble sleeping. More often than not I worry about sleeping too much. If you are having problems sleeping, or any concerns about it, you need to bring it up to your doctor.
Loneliness was a big problem for me after I got hurt. You feel different, and whether it’s self-imposed or just because you haven’t been invited out in a while, you can find yourself being isolated for long periods of time. It can be due to not wanting to deal with others, not wanting to feel inadequate in comparison with others, or it could even be that your friends stopped inviting you out because you shut yourself off after you got hurt, and they don’t think you want to be around anybody.
Talk to the people closest to you and try to figure out why you’re finding yourself isolated. Reach out to your family and friends, let them know you need to be around people. Reach out to someone. You aren’t going to do yourself any favors by shutting yourself in. Take it from me – that only makes the depression worse. My recovery improved by leaps and bounds when I started the TIRR Challenge Program, because it forced me out of the house every day, and into social situations. Going back to school only further helped me to regain my confidence and feel more “normal.”
** If you are feeling depressed, with or without an aneurysm, please seek help. No one should suffer alone. There are many ways to treat depression, and despite my previous comments about antidepressants, some of us who’ve had our brains hemoglobically changed may never be able to feel balanced without them. Everyone’s chemistry is different, and it’s something you have to decide WITH your doctor. I hope at least some of this has been enlightening, either to help you understand your own depression more, or someone else’s. Keep hanging on!
As you may or may not already know, I have an attention span that can often only be measured in nanoseconds.
Has this gotten worse since my brain injuries? Well, duh! My mind wanders, I get easily distracted, but most of all, I get easily overwhelmed…a feeling to which I usually respond by putting EVERYTHING off. “It’s too much, I’ll come back to this later…”
Why do you think it took eleven years to get my memoir completed? That was WAAAAY too much to deal with, so I just kept putting it off.
The other day I started thinking about ways I could help people recovering from their own brain injuries and the many after-effects, and it dawned on me that somewhere I had my handouts from my stress management group in the TIRR Challenge Program.
That is a wonderful program that gets people ready to go back to school or work after a brain injury. It gets you back in the habit of going somewhere all day, having a schedule and things to do, and most beneficial of all: interacting with people. I had stress management, meditation, and I believe anger management groups, as well as physical and occupational therapy. I benefitted immensely from the program, made progress quickly, and was soon ready to return to college.
However, I know not everyone is lucky enough to live near a place like TIRR that has such a program. Hell, not even everyone in Texas will be lucky enough to get into the TIRR Challenge Program. DARS won’t pay for you to participate in the program (on the “returning to school” route) unless you have a “traumatic brain injury,” which they define as a brain injury which happened externally. Well pardon the hell out of me for not getting hit in the head by a 2x4, but it was PRETTY DAMN TRAUMATIC when my brain was attacked from the INSIDE!!!
This is something I address in my book which frustrated me, and something I vowed to change when I heard about that stupid rule and definition, but that’s a post for another day.
Since not everyone who’s dealing with the repercussions of a brain injury (“traumatic” or otherwise) will be able to benefit from a program like TIRR Challenge, I thought I would devote a couple posts to sharing some of the notes I saved from my groups.
These notes come from a handout with advice for compensating for attentional difficulties at home and work:
1. Use a “white noise” or environmental sound machine to mask outside sounds.
I don’t know about you, but my go-to homework CDs in high school were Eric Clapton Unplugged, Louis Armstrong, and Frank Sinatra, and I still use them when I need something to soothe my thoughts and chill me out, or some good “background music.” I don’t know if your “white noise” will consist of acoustic versions of Layla and Nobody Knows You When You’re Down and Out (my favorites), but find what works for you.
2. Use a private office or room in the house to complete tasks that take a high degree of concentration. This helps cut down on noise and distractions. If you can’t find a private space in your house (like many of you parents), they recommend going to the library to complete important tasks such as paying bills or meal planning.
3. Keep your workspaces at home and work clutter-free. Clutter is visually distracting. Everything should have a place and BE IN its proper place. The only things out should be tasks in progress. They also recommend that only one or two tasks should be in progress at any time. And be sure things are put away at the end of a work day or at-home work session.
HAH!! If you could see my desk right now you’d be laughing at my advice, especially considering I’m someone for whom clutter is very stressful! Since we’ve moved, all the paperwork needing to be filed, shredded, or otherwise dealt with has landed on my desk. I keep saying “I’ll do it eventually,” and eventually has to come sometime, right? Maybe tomorrow…
All I know is, for the first time in five years of living together, Scott’s desk actually looks cleaner than mine.
4. Create routines. They create less demand on memory, making it less likely you’ll forget important things because you were distracted by the dog with the fluffy tail. Pay your bills at the same time every month, do your grocery shopping the same time every week, return phone calls, exercise, and pick up the house at the same time every day, etc. Even spending quality time with the family can be “scheduled” to a certain extent with a routine.
Okay, so that’s the positive side of routines. Then there’s the part where routines put anyone watching you at the advantage. Until I have kids who need routines, I enjoy keeping potential stalkers guessing. Staying in most of the time and coming and going at random hours gives me the advantage over bad guys and snatchers. Also, going most places with my husband helps…he’d kill anyone trying to grab or hurt me.
It’s probably a good thing I can’t watch my “crime stories” anymore (a.k.a. “Murder Porn”) …except for what Netflix has to offer…
5. Plan uninterrupted “work time” – a time where no intrusions are allowed by coworkers or family members. YOU must enforce this. Close your door and let others know they are not to disturb you.
For me, this was always my “meditation time.” Nothing negates the peaceful serenity that meditation brings you like your mom opening the door, letting the cat in, and SEVERELY PISSING YOU OFF! So, I started putting a note on my closed door while I meditated, warning that even knocking could likely get you killed if you interrupted my attempts at tranquility. Try me again later when I’m calm…er.
6. Divide large tasks into smaller tasks and steps, that way you only have to maintain attention long enough to complete smaller subtasks.
This helps me when I’m cleaning. If I divide it into bathrooms, the kitchen and living area, and the bedroom, it seems easier to handle and I can divide it over a couple days. Although, one thing I love about our new, smaller apartment is that it’s possible to clean this whole sucker in one day…with breaks in between, of course.
7. Make daily lists of prioritized tasks. Put the list somewhere you are likely to see it throughout the day, and refer to it often. This way you can be sure you are attending to the most important things. If you find you’ve gotten distracted by a less crucial task, you can return your attention to something more crucial after referring to your list.
I don’t do this nearly often enough, and when I do, the list is often on my phone, where I don’t see it enough to remind me of things.
8. Carry a small notepad or tape recorder with you and use it to record thoughts you have that need to be attended to later. This way, you can finish what you’re working on, but know you’ll remember what else you thought of later. Take only enough time away from your current task to create a reminder message, then return to what you were doing.
This is where the “Notes” app on my iPhone helps me out. If I think of something I need at the store or have a random idea I want to remember later, I jot it down in a note. I’ve been walking around for years with an idea for a present for Jaena in a note, just trying to find the best way to make it! No, Jaena, I will not tell you what it is!
9. Take frequent but brief breaks to improve concentration. Take a quick walk around the block or the house to energize yourself before returning to your task.
10. Try to focus your attention on only one important task at a time. If you must do two things at the same time, make sure at least one of those activities requires little cognitive energy or sustained concentration.
HAH! Multitasking was for Past Jessica.
11. Use a timer to keep track of items started that need to be attended at a later time (for instance, moving clothes from the washer to the dryer, putting something in the oven that needs to be taken out later, putting a large job in the Xerox machine that needs to be removed in 10 minutes, etc.). They recommend getting a cheap digital timer with a clip, so you can carry it around with you. Forgive them…this was before iPhones. Just use the timer on your phone.
12. Shift your work hours at the office or “work” hours at home in order to increase distraction-free time. For example, go into work early before anyone else gets there who could interrupt you, or take care of your work before your children or spouse get home.
13. Use foam earplugs, or use earphones with soft soothing music (like light classical…no vocals, as they tend to be distracting). This can help screen out distracting sounds.
14. Face your desk away from the door or line of traffic at home or work. Create a workspace that is as far away from well-trafficked areas as possible.
15. Work reduced hours until your cognitive stamina is improved. Delegate tasks to others at home or work, so you can focus on what is most important.
There’s no shame in admitting you can no longer handle what you could before. 11 years after my brain injuries, the most school I can handle at one time is three classes, and that’s with Scott talking me down from anxiety attacks at least once or twice in the semester. That being said, I often only do two at a time.
If all else fails, and you’ve had a frustrating, distraction-filled day at the office, home, or everywhere, I recommend meditation. I bought the CD that we used in the meditation group at TIRR Challenge. Led by a Scottish Buddhist named Bodhipaksa, it’s hard not to be soothed by his lovely accent. “Bodhi,” so you know, means “enlightenment,” and “paksa,” (with a dot under the s, so it’s a “sh” sound) means “wings,” so his name means “Wings of Enlightenment.” He says he was given the name when he joined the Triratna Buddhist Order. The CD I use (all of his are available on iTunes, and I highly recommend them) is by Bodhipaksa, and called “Guided Meditations: For Calmness, Awareness, and Love. It’s great for beginners.
Just take my advice, and warn your husband, or whomever you’re living with, that you’re meditating, so this scene doesn’t play out in your house:
OH LOOK, A SQUIRREL!!!
Well, since my life has basically become a walking Public Service Announcement, I wanted to warn you about something I have lived in fear of for the past eleven years…I just wasn’t ready for it to already be happening.
When, in the years following my two strokes and release from the hospital, I slowly began to realize that I was not going to be able to regain the use of my left arm and hand (barring a miracle in the field of stem cell technology), I knew in the back of my mind that someday my right arm would someday begin to suffer the wear and tear of overuse. When you only have one arm to lift, carry, scrub, push, and pull things…not to mention all the other little things we do during the day that I’m not covering…well, it doesn’t take a genius to realize that it can’t pick up the slack for the other arm forever without having complications.
I had envisioned those complications coming after I’d had kids, or somewhere further down the line, but they’re showing up in force now. And it’s not just the arm, but unexpected pains in the leg as well. Your injured/paralyzed leg gets back to work faster than the arm because of the weight-bearing we do on them constantly throughout the day. Weight-bearing exercises are the best thing we can do for our injured limbs, as they keep them stretched and wake everything back up (both in the limb and the brain).
Take it from me: if you’re released from therapy, where you had a therapist forcing you to do weight-bearing with your arm in order to keep it stretched out…I know it sucked, and when you’re at home you’d rather not torture yourself, but the muscles in your arm will shorten faster than you’ll believe, and before you know it, you won’t be able to get your elbow straight anymore, much less reach your arm out.
I’ll admit it – I got complacent. I saw the hour I’d spend in therapy heating my arm, stretching, doing weight-bearing, using the arm-bicycle thingy. And the little reward that came from the work: being able to walk down the hall at the end of the session, Koosh ball in hand, and after much concentration, be able to will the fingers to release their grasp juuust enough for the ball to fall out. For a former piano player, having such little control over my left arm and hand was maddening enough to want to just ignore the damn thing. So I did, and now I pay for it.
My left shoulder had been dislocated and ultimately developed subluxation after an inattentive nurse – who apparently missed the class about not pulling on a stroke survivor’s injured arm – ignored my warnings not to pull that arm, and did just that. Mom walked in the room (the ONE time she left me alone) just in time to see her yank my arm and hear me scream out in pain. For those of you who know my mom – you know why that must have gone down as one of that nurse’s least favorite days. Mom let loose on her: “How could you not know not to pull a stroke-injured arm??!! What’s wrong with you??!! We’ve never had this problem; I want to speak to your supervisor!” It wasn’t pretty. But considering I had asked her not to pull it…even raising my voice as high as I could for the first time…once we got the X-ray confirming it was dislocated, I had no sympathy for her subjection to Mom’s wrath.
Since then, my left shoulder has suffered degenerative arthritis, and the occasional pinched nerve because of the way the subluxation has messed up the joint’s positioning. When my left hip began giving me problems a few years ago, I easily identified it as more degenerative arthritis, as it felt very similar. My doctor sent me for an X-ray, which confirmed my suspicions: both joints had degenerative arthritis…yay!
Then, just a couple years ago, I started noticing on my more active days that after running errands or doing a lot of walking my right hip would start bothering me, especially if I was favoring it. Then the worst happened: In the grocery store one day my right hip and knee hurt so badly I could hardly bend down to get something off the bottom shelf.
Ugh, my therapists had warned me about this…and I hate it when they’re right! In June 2010 I had what was basically a 4-in-1 foot and leg surgery. I was finally sick enough of all the pain I endured when walking from the kicking in foot and curling under toes that I was ready for the invasive surgery I had always put off. They went in and lengthened my Achilles (if that made you shudder, just wait); performed what’s called a “splat”: where they take the tendon on the top of your foot which is causing it to kick inward, split it in half and wrap the other half around the other way (essentially making it work with the spasticity to make your foot lay flat…HAHA, foot!); and finally they lengthened the muscles under my toes and fused that bastard big toe straight with a screw. I had suggested a Lincoln Log…but the screw works fine.
Well, despite a very painful six-month-long recovery (your doctor is lying to you when he says it could take three…it’ll be closer to six), the surgery was worth it, as I was finally able to walk barefoot without a brace again! No more having to put on a brace and shoes to go to the bathroom in the middle of the night! For the girl who had gone everywhere barefoot her whole life, this was all I wanted. I couldn’t care less about still using the cane (at least in public, so people don’t run over me)…THE BRACE WAS GONE!!
Then I got to therapy, with physical therapists – the ultimate downer. They explained that without the brace, I was dipping my right knee when I would take a step with the left, in order to get my left heel on the ground. Over time that could give me problems with my right knee. Would I consider wearing a brace again, to help get that heel down without my right knee dipping?
“WHAT??!! Kiss my ass!! I just got rid of that damn thing, now you want to ruin my shoe possibilities all over again?! Not just no, but HELL NO!!” I used one of their smaller braces when I was at therapy, and yes (groan), it did help get the heel down more easily, but I absolutely refused to get another brace. And here we are: 6 years after the surgery the knee pain begins. The day before yesterday it was giving me more pain than my two shoulders, which were already hurting. Today I’m back to my right shoulder being the most painful. There are rarely days when nothing hurts.
My point to all (especially those recovering from a brain injury, or illness, or who have been inactive) is to take care of your body and your joints, and to keep it as healthy and mobile as possible by being as active as you can. I run into new troubles now just trying to do that. A year after my strokes I was able to do my Pilates (albeit modified a bit) fairly easily; and after the leg and foot surgery I was excited to find I could grab that bad left foot and stretch the bastard back, getting a better stretch in that leg. Then I felt the first “clunk” as my left hip rather forcefully put itself back in the socket.
I was hoping that wouldn’t turn into a bigger problem, but I wound up having to remove the whole set of exercises where I lie on my side from my workout, as my left hip and knee slide around in their sockets as I kick my leg back and forth. The creepiest, of course, is feeling that hip clunk in and out, just knowing it could hurt later. Just the other night I learned I would have to once again modify an exercise, as I was finishing up my routine. I had both legs up in the air, making circles one way, and as I began making circles going the other way, it already felt wrong…but I kept going. Then it happened: CLUNK! I felt one of the more violent clunks I’ve felt as my left hip shifted over and back into the socket.
If you know me, then you know that the last thing I want for telling you all this is your sympathy. I tell you all of this in the hopes that you will not have to pay the price I’m paying for not taking better care of my body. We only get one body in this life, and it will eventually start to wear out – some faster than others. I’ve said many times, “if this is me at 31…I’m not looking forward to 61.” So no matter what your age or health, be as active as you can, take care of your weight, bones, and joints, because you could get to a time when you're finally trying to do just that, and your body won’t want to work with you.
By the way...I started a Facebook page to promote this blog, as you may or may not already know. You can get there by clicking below to go to my Facebook page, or visit www.facebook.com/backhandedbykarma
If it weren’t for Facebook’s reminder yesterday, it might have totally slipped my mind that it was the 11-year-anniversary of my second brain aneurysm hemorrhaging. As I shared the post from four years ago that Facebook had reminded me of, my mind briefly drifted to where I was that morning eleven years ago. I let my mind linger for only a second before bringing it quickly back. It was too dark and terrifying of a time, not to mention psychosis-provokingly depressing. It was still too real whenever I allowed myself to wander back to that dark, cold, foreboding ICU pod. I didn’t want to remember. [Hopefully someday when my memoir is published, you’ll be able to read about it all and see just why I hate the memories.] Aren’t I in enough pain today? Must I remember the horrendous pain and confusion from that day? Then, as I wondered whether writing a post about this very topic would be good therapy, I remembered that quote from Rocky Balboa the night before that hit home with me so strongly.
I love the Rocky movies. Say what you will about Sylvester Stallone (although I wouldn’t, if you like the way your face looks), but he did a wonderful job with those movies. They’re powerful: they get me rooting for Rocky so much that I forget he’s not real, and they move me to tears, both happy and sad. And one thing I love about the guy: he keeps getting up. He’s a reminder to me that I can take whatever life hits me with…that it’s the truly tough ones who keep getting up. They don’t make excuses; they just keep going and getting tougher from the calluses life gives them.
After that second aneurysm, I was angry. I couldn’t believe the doctors had let this happen.
“There’s a little something in there. Sometimes those dissipate on their own, so we’ll keep an eye on it and if it’s still there when we put her skull plate back, we’ll clip it.”
Well, thanks for taking that half-assed approach, guys…it didn’t wait for you, it GOT BIGGER!
I would lie awake in my bed just seething sometimes. I had been relearning to walk, and doing well. I really thought I would be walking out of the hospital when that day came. And I had been able to move my left arm. I didn’t remember just how much I was able to move my left arm before the second aneurysm until I was reading my dad’s notes from the hospital and adding them in to the memoir. Then I remembered the anger I dealt with following the second hemorrhage. I blamed the hospital a lot at first, but over time I realized that it was the fact that I was still in the hospital, and my skull plate was still out, that saved me when that hemorrhage occurred. Whether an earlier surgery could have saved me some range of motion, I don’t know, but I do know that I love that hospital, and they did save my life. I owe them too much to go around blaming them for anything.
Sometimes I was just angry that a second hemorrhage had happened at all. Hadn’t the first one been enough to knock the shit out of me and jerk me out of the lifestyle I had been living? Hadn’t it driven home the point that I wanted to do things differently? But eventually, I just had to hand my life over to God. That’s the only way you can really live. I developed an attitude about the hardships I had gone through (and still face every day) that Rocky sums up much better than I could:
“The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward.”
The last part is my favorite: “It ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward.” That’s why I keep going…through the pain…through the days when I’d much rather be gone from here and hanging out with my grandparents: I keep going to show that I’m NOT going to let this world and its suffering keep me beaten and on my knees, I’ll keep going and trying to earn the forgiveness already given to me by Jesus.
JP MacFarland is the author of Hope Alive: A Coming of Age Tale Brought About By a Back-handed Bitch-slap From Karma. Native Texans, she and her husband live outside of their hometown of Houston, with their crazy fur babies. Every day brings new challenges to face and figure out with one arm. It's a crazy, one-armed life!
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