The Great Now What
I love this and hope it’s successful. Please donate to this.
I am very confident in my lack of confidence that there will ever be any kind of cure for stroke. If it ever happens, I’ll be long, long dead. So, our options are to figure out this new incredibly messed up life for ourselves because the people who are supposed to help us the most, don’t. That’s been my experience and the experience of many, many others who have commented on this blog.
So please donate to this project and read her story. “Maggie (33) has it all: brains, beauty, an education, a fiancé, and plans for a family.” We can all say something similar, no?
Watch this trailer (it’s different from the teaser that was on my last post.) Watching this trailer will make you cry, like a lot, because if you’ve had a stroke you will know exactly how hopeless and broken and devastated and scared and angry and (insert emotion) that she feels. You’ll be able to empathize with Maggie. I know I can. The part of the video with her in a wheelchair kicking a stupid ball to her physical therapist was – I’ve been there.
So, watch, read her story, and donate to this please.
Shattered Life
A few months ago, I promised to start blogging again consistently and I haven’t so I want to apologize to anyone that might have been counting on that. I got a lot of heartwarming messages that made me cry having to do with how much this blog helps people feel connected to others going through this hell. Because absolutely NO ONE in real life will understand or come close to understanding anything unless they’ve had a stroke themselves. You can explain things until you’re blue in the face and you may think someone finally understands something – TRUST ME, THEY DON’T.
Having a stroke will either completely destroy or drastically alter your life as you know it. I know of zero exceptions to this rule. Your choices are to figure out how to continue to live in your messed up body with a messed up brain, or not. You will most likely go back and forth with your decisions for years to come.
The reason I’m doing a post right now is because a really cool (seeming) lady (I don’t know her) e-mailed me about a documentary she is making. She had a stroke at the age of 33 so she gets to go through life in a disabled body just like me. Hopefully, she’s had more luck with being around understanding, sensitive people than I have. She sent me a link to a 2-minute teaser of the documentary she is making and asked that I share. I think it’s awesome and am happy to share it.
She is “hoping to do something good with my shattered life. I’m trying to convey to people what my life is like with pain/disability/a shattered sense of identity.” Those are her words.
Watch this ↑↑↑
Sensitivity Training
Straws
This blog of mine has over 450 followers and I really hope that someone who reads this has or knows someone who has decision-making powers at a restaurant/café/coffee shop, what have you. This whole push for straws to be used less at restaurants is great. It’s great. I’m all for the environment and reducing my carbon footprint. My husband would tell you otherwise but I really am. I love this planet. I’m just not a big fan of living on it.
Back to the topic – straws. Not having straws available to your customers is discrimination against disabled people. There was a time in my life not so long ago that I could not drink a beverage without a straw and a tight lid due to the severe tremor which occurs mostly in my dominant hand, but small tremors also happen at times when using my non-dominant hand. There are people living in this world who CANNOT drink independently without using a straw. If you are an establishment that chooses to stop handing out straws with drinks unless asked for, good for you. If you don’t have straws available to your customers if asked for, THAT’S DISCRIMINATION.
A new coffee shop I recently found which I love has a sign that says #nostraws or something. They’ll be receiving a letter from me.
Talking
I finally feel, after 7+ years, that I speak normally again. Well, not normally but pretty normal. Many, many people have told me since about 2 or 3 years out that I sound absolutely fine, my voice is fine. Well, telling me that and my believing it and feeling that way are very, very different things.
I still get caught up on words, thoughts, etc. I still mess up all the time when I’m trying to explain something. I can explain anything to you in writing, I can write masterpieces, but don’t ask me to explain or articulate something to you vocally. Up until recently, I felt so incredibly uncomfortable in a group of people mainly because of my voice and my inability to participate fully in a group conversation. I had to be one-on-one with people. I still MUCH prefer that but I feel ok about conversations in groups now – as long as they’re not too long. I’m able to project my voice and make sarcastic comments again, I have timing again. For a long time this was not the case because I spoke so so slowly that I would ruin a conversation if I tried to interject something. I felt like people just pitied me because I sounded so awful.
For the first few years, speaking was physically taxing for me. I remember talking to someone whose husband had a stroke and she was having such trouble with the notion of simply talking being fatiguing. Think of it this way – I’ve talked a lot about gait/walking on this blog because that’s my thing. I know how to strengthen certain muscles used in walking and I’m able to figure out which muscles need to be strengthened.
The same goes for your voice. Speaking is controlled by muscles just like walking is and all of those muscles that control speech need to be built back up just like the muscles used for walking. @Tina C. – it’s physically taxing for your husband to speak right now, it’s fatiguing for him, it gets better. I have said through all of this that the speech issues were the most devastating part of the stroke. Not being able to say what you want to say when you want to say it is pure hell. Having to depend on other people to simply speak for you, order for you in a restaurant – stuff like that, is pure hell.
I wasn’t afflicted with expressive aphasia (the inability to speak). It sounded horrible but I was able to go to a therapist and talk about stuff and cry. Someone with expressive aphasia would not be able to do that and my heart goes out to you if that describes your situation.
Never Mind
Let me preface this story by saying that I have the best, most empathetic husband ever and I can’t believe I found him. That said, on with the story…..(I asked him if I could write about this)
It’s hard for two Highly Sensitive People (HSP) to be together. Especially when one of the HSPs has a disabling, chronic illness. Last night, this happened….
I started to say something, and he didn’t understand what I said,
He then said “what?”
Me: “never mind”
Him: “No what were you gonna say?”
Me: “never mind”
Him: “No, what?”
Me: (Gets angry and upset and goes to bed)
Him: “What the hell just happened?”
Sometimes, I just need to stop talking. Pat didn’t hear what I said the first time around, and when it’s late at night and I have zero energy anyway, don’t ask me to repeat something. Just don’t. Seven years after my stroke, it is still physically taxing for me to get words out at times. When he didn’t understand me the first time and asked me to repeat myself, my brain flipped a switch, I became confused and got all messed up in my head about what I was gonna say, and……………..I just needed for it to be dropped and change the subject.
He didn’t drop it, wanted to know what I was going to say and I got angry that he kept pressing me to talk after I had said “never mind” twice. He told me today that he genuinely just was curious what I was going to say because he thought I was about to say something funny.
Of course, I interpreted it incorrectly which led to me getting angry and making him feel bad which then makes me feel terrible……
So now, we agreed that “never mind” is our safe phrase. Whenever I say that, he knows now to just change the subject.
Brain Fog and Migraines
Aside from fatigue, which is a whole other dimension of disability and always deserves its own post when talked about – it is never to be combined with the hundreds of other things that I deal with. Anyway, BESIDES fatigue, as far as functioning in daily life, bouts of brain fog and migraines are the things that hold me back the most in those areas 7 years later. I’m not even talking about participating in life – writing, hanging out in groups, taking a walking tour – all of which I cannot do. No, these things sometimes take away my ability to simply FUNCTION certain days.
The brain fog stills gets me sometimes. There are still days that I just know as soon as I wake up that the day ahead will be a lost cause. Forget about getting any work done or thinking much at all. It doesn’t happen a lot anymore, and it usually won’t last the ENTIRE day. It’s one more thing that no one else would understand unless you’ve experienced it.
The migraines. They’re just so bad. Years ago, I gave up dairy for a while and it did help with the migraines, but it only lasted about a month or 2 because I wanted to order a pizza. A few months ago, I had back to back – within weeks of each other – 2 of the absolute worst migraines that I’ve had in about 5 years. 3-days in duration, nausea, vomiting, and a pain so intense it makes you want to cut your head off. I remember once when my husband was at work and I was at home, I got a migraine and texted him “you might wanna stop at Target on your way home and pick me up a new head, I’m done with this one.”
So, I’m trying dairy-free again. It helps. But I have a headache right now and I’m disappointed. Perhaps I’m just having a Herxheimer reaction as all the dairy leaves my system.
Fatigue
Years ago, I wrote a post about post-stroke fatigue, I’ve written about this subject quite a lot….Anyway, I remember Dean leaving this comment on some post, “7 years later and fatigue is still a bitch.” Well, now I’m at that point. I’m 7 years post and I’m going to say the exact same thing. Seven years later and fatigue is still a bitch. Dean, how is your fatigue now?
This is terrible, quite frankly. And just like everything else having to do with a stroke, unless you’ve experienced it, you can’t possibly begin to understand this. When I was 1, 2, or 3 years out, people around me were WAY more sensitive about it. When you look bad and sound even worse people tend to be a lot more sensitive about things. Everyone around me seemed to be a lot more understanding about the fact that I need to sleep A LOT and that an evening out or any social encounter whatsoever causes me to need recovery time usually for the entire next day or two. This was pretty much already the case because of my introverted personality, add stroke recovery to that….
Now, things are very different. Now 7 years later, I look great, sound great, I look like absolutely nothing is wrong with me and have appeared that way to other people for quite a long time, so other people are much less understanding and sensitive about this issue, and every other issue that I deal with every day of my life.
I remember a really arrogant neurologist prick telling me a year after my massive stroke(s) that the fatigue that I was experiencing was solely caused by my depression. And this guy was considered to be a worldwide “expert” on strokes. ANY brain injury is going to cause massive amounts of fatigue. Anger.starting…blood.beginning.to.boil……about.to.explode…..ok, enough, moving on.
HEY SPOUSES: if your wife or husband had a stroke and sleeps until noon, then goes to bed at 9 o’clock that night……don’t you dare make a comment about it.
All squares are rectangles, but…..
A baseball player recently collapsed during a game and it was revealed the next day that it was due to a brain hemorrhage. My husband asked me what the difference is between a brain hemorrhage and a stroke. Well, a brain hemorrhage IS a stroke. It’s all semantics. I started this blog a few years before I met Pat. My muse for creating the blog was my own arrogance, thinking that I knew anything because of my medical knowledge. Since the year 2014, he has been my muse for most posts. Most ideas have come from a conversation that I had with him. He then apologized for asking that question, and asking me to explain something having to do with a stroke thinking that it might upset me. It’s cool, I like that I have a whole bunch of medical knowledge and I like being able to explain things like this, it’s the fact that this knowledge overlaps with my personal medical history that is the f’ed up part.
A hemorrhage means that a bunch of blood was found where it isn’t supposed to be. If it happens in the brain area, it’s a stroke. That’s going to kill some brain matter and that, my friend, is a stroke. So I explained it to him this way, “all brain hemorrhages are strokes, but not all strokes are brain hemorrhages.” My main stroke, for instance, was caused by a blood clot that decided to take a journey to my brain and get lodged in an artery up there. But, not to worry, I got to experience the other type of stroke about a week later when I was given too much heparin(blood thinner) which caused a brain hemorrhage. Thanks, docs. So, it’s the CAUSE that is the important thing to know. He then asked about a brain aneurysm. A brain aneurysm means that a weak blood vessel in the brain burst, causing a brain hemorrhage, which is a type of stroke.
He asked if this baseball player could have life-long consequences and disabilities like I do. The answer – oh yes, I’d be surprised if this man returns to professional baseball. He had a stroke. They are just calling it a ‘brain hemorrhage’ right now. The word ‘stroke’ scares the hell out of people. And rightly so. He said “ok, so it’s like saying that all squares are rectangles, but not all rectangles are squares.” Yep, just like that.
Climate
Climate change makes a hell of a difference. That is, moving to a warmer climate. For me, personally. I’ve lived in Florida for two months and I realized yesterday that I haven’t had a migraine since about the first week that I was here. I’ve had threats here and there and have had small headaches, but I haven’t had a full-blown 3-day attack replete with vomiting and being totally out of commission. This was a twice a month occurrence, at least, up north.
I’m gonna go bang on some wood for a while.
I’m walking better, my balance is better. I’m sure no one else notices this but I’m speaking better and more clearly. It’s not as much of a struggle to get certain words out. The power of susnshine is not to be underestimated. Vitamin D supplements don’t cut it, I tried. Fake light from light boxes doesn’t cut it, I tried. I tried everything. I moved down here mostly for the mental benefits because I could no longer live in the dreary, dark, cloudy, rainy hell that is PA. (I’m sorry if you live in and like Pennsylvania but I absolutely hate it). I didn’t expect an effect on some of my physical limitations this soon. I thought stuff would be helped eventually, but not this soon.
My husband is not thrilled about living in Florida. This place certainly has some crazies living here, but it’s been 2 months and I’m in a little bit of shock how good it’s been for me and my health. And we have yet to experience a winter here and the beautiful, gorgeous weather. I could do without all the mosquitoes, though.
Signature
Buying a house in another far-off state at the same time as selling your current one is a hell-ish process and I don’t recommend it. Unless you’re like me and you’re absolutely suffocating in your current location and need to live somewhere else for the sake of your mental health – then I highly recommend it. I thought that having a stroke, being in the hospital for a month, and having your entire life turned upside-down and inside-out was the closest that I would ever get to HELL-ON-EARTH. Ummm, yeah it was. This whole house buying/selling process has been like a vacation compared to that. This has been great. I’m sure my husband would agree.
So anyway, we’re done tomorrow. The house in Florida is ours now and we close on our Pittsburgh house tomorrow. Then we’re done with all this crap. When we drive back to Florida on Monday, we’ll just be driving home. To our house. There will be no uncertainty, anxiety, stopping at a hotel in West Virginia in order to print out and fax documents. No panicky phone calls and e-mails, we actually get to enjoy this road trip. Either the person that sold us the house or the selling realtor sucks. I’m not sure where to place blame, but one of them sucks bigtime.
The closing of our house required signing A LOT of paperwork. A LOT. Not being able to write is one of the most devastating things for me about being alive, so that was fun. We got a Power of Attorney drawn up so that Pat could legally sign everything on my behalf. When we went to apply for a mortgage is when I became aware that this would be necessary. There was a ton of paperwork to sign then too. And I had to sign everything myself. We didn’t have the POA yet and the guy had to witness me signing. So, I had no choice. He kept saying to me “it doesn’t matter what your signature looks like.” Thanks for trying to make me feel better dude but that’s not at all the problem. The problem and what makes me so upset is not the illegibility of my hand-writing. It’s the physical act of putting my right arm/hand in the writing position. That very act makes me cry. Placing my arm in that position sets off a series of events inside of me that ultimately ends up with me in tears. Good thing that medical records have pretty much all gone electronic. There are a ton of people who hate this and complain about it, but I sure as heck am thankful for it. I certainly wouldn’t be able to do this job if it involved any writing.
St. Petersburg
I’m closing on my house in Florida tomorrow. I finally feel like for the first time in my life I’m really doing my thing, what I want and not conforming to some vision that other people came up with as to what I ‘should’ do or how I ‘should’ behave. I’m doing what’s best for me and my husband, and our marriage. That’s certainly what matters most.
We arrived in St. Pete last night and have been exploring the city since we got here. On foot. We’ve been walking around. I remember when I wrote this post. When I wrote that, curbs were really scary to me. A small curb felt like a freakin’ mountain. I remember the feeling, the fear. Anyone reading this that never had a stroke, going up and down a curb is second nature to you and doesn’t require any concentration whatsoever. Have a stroke, that changes. Drastically.
But walking around this flat city, curbs are no longer scary to me. I won’t say it’s second nature for me, I’m still very aware that it’s a different level of ground, but it doesn’t require much extra concentration for me to navigate a curb. I squeeze my husband’s hand a little tighter when approaching a curb but I don’t have to think about doing the whole ‘Up with the good, down with the bad’ thing anymore. 6 years after the stroke and it’s so different and better than those first couple of years post-stroke. So, so much better. It gets better.
Sitcoms
The idea for this blog post has been rattling around in my brain for a while so I finally decided to get it out of there and write it.
Apparently, having a stroke is hilarious. I’ve noticed on several TV shows lately- I’ve noticed this quite a bit in the last 6 years – but it seems to have been very concentrated lately. In recent episodes of multiple shows, the common thing to say when someone is acting weird is, “are you having a stroke?” I’m wondering if there will ever be a day in the future that I will see that or hear that and it won’t have an effect on me. 6 years later and it still has a major effect on me. I so wish it didn’t, but it does. Will there ever be a day that I’ll be apathetic and unresponsive in the presence of some insensitive joke on TV? Or insensitive people? – which are RAMPANT in this world.
I dealt with my trauma mostly with humor. Self-deprecating humor. I think resorting to comedy is a very common way to deal with horrible things. It’s how I dealt with it most of the time. Certainly not always, but when I wasn’t a basket case of tears or unbelievably angry, I was laughing at myself. I know it’s how a lot of you have dealt with it. The problem with self-deprecating humor is this – other people see me make fun of myself and think that means I’m comfortable with jokes being made about certain things regarding me, strokes, whatever. That’s not the way self-deprecation works. It has the word ‘self’ in it. I can make fun of myself all I want, you cannot. There are 3 people on this planet that have liberty to say absolutely anything to me, about me, around me, etc. Everyone else – no.
The fact that TV shows think it’s for some reason funny to say “Are you having a stroke?” doesn’t make sense to me. Most people don’t know how to be funny and are not good at it. The majority of people that I encounter in life don’t have near the sense of humor and wit that comes so naturally to others (myself included). If you know how to be funny and empathetic, and are delicate and intelligent with highly sensitive topics, then pretty much any topic in life can be skewed somehow into something humorous. Granted, I’m incredibly sensitive to this. I would not have noticed it 7 years ago but I sure do now. But, correct me if I’m wrong, it seems to me like a stroke is joked about and made fun of way more than other illnesses and disabilities. I guess it’s because strokes are all-encompassing. Any movement, function, amount of language, thinking, conversation – just about anything can be f’d up after a stroke so I guess it’s easy to say on TV, “my god she’s having a stroke or something.”
Maybe I wouldn’t be so incredibly sensitive about this if people within my own “support” system had not said some incredibly idiotic, stupid, insensitive things to me in the last 6 years. Oh well, c’est la vie.
