Previously I have in my Swedish blog post I've told about all kinds of insulting behavior I've encountered from other people in the soceity - including strangers and former partners' parents. I have also revealed when stranger children straight out have asked their parent what it is I have attached on my knee (Even adults strangers asks this question for example on the bus)
I wish to clarify a thing or two, once and for all.
Feel free to ask what it is that I have attached on my knee. If you don't ask you don't learn. But to demand me to tell you why I am limping is straight out rude, purely mean and insensitive. It's stupid.
Those who are so overwhelmingly curious and require that I reveal why I am limping and what ''happened'' / what I've encountered in life that led up to this - they are extremely untactical people. Seriously... [It's not even a matter of impulse control because even I have better impulse control than that - and I've got both brain damage and Borderline ..]
Why can't you demand this? Because I have no obligation to tell you anything. And if I refuse or try to avoid answering, I appear as if I'm sensitive and you hit a nerve.
It's sad that be surprised when someone doesn't ask or demands anything about my ''limping''. It sickens me that I even have to be wondering why someone don't ask - for example, when I started hanging out with someone new and didn't get those puzzling insensitive questions despite that I walk with a cain and sometimes in a wheelchair. That it still don't end up with any comment about WHY. It is sad that I am surprised by the sensitive people who do not base their opinions on me because I don't eat with a knife and fork or that I paint the nails with the help of my mouth.
Basically, it's not about that I'm oversensitive. I've lived with stroke for 10 years now. I've lived without sensation in the entire left body for 10 years! I know I will not be completely restored. But I do not identify myself with my stroke. My stroke is'nt who I am as a person.
The reason I do not cry out my diagnoses and happily reveals to strangers the reason about the wheelchair is that I'm SO F-ING TIERD to have to explain. The words "I have had stroke ..." have been said too many times from my lips. More than they should. And closely followed by the gazing with cow-like eyes and rude demands and they're soo sorryy oh my god aww you poor thing the follow-up question always is the WHY. Why did you had a stroke? You are so young! And then I again have to say "I was on birth control pills and apparently had two genetic mutants that makes developing blood clots way easier ..."
And because I can't f-ing stand sympathy [because it's so unnecessary ridiculous and does'nt help me at all) I'm forced to continue; "But it's 10 years ago..." And seem like it's just a shrug for me.
So - when [stranger] insensively demands me to tell [just to reassess his opinion about me based on - basically - funcophobia], forces me to look like I do not care, as if I don't wish every day to not be brain damaged. Their impertinence how they so eagerly want to put a label on me.
So, please, please insensitive people. Wake the fuck up and see what you're doing. Think long and hard.
Is it ok if I demand you to tell me why you are so fat or why you are so skinny?
Is it cool if I poke my face in front of you and breathe in your face while I'm demanding you to expose your life story?
Please society, get a grip and realize that handicap phibia is still here and it's growing...
In addition, I don't want your sticky fingers on my body when you're trying to find out if I'm really paralyzed or when you demanded your answer, namby-pamby gives me a "comforting sympathetic hug".
Like, woah ... we met 2 seconds ago. Chill.
What are your thoughts about the matter? Do you recognize yourself?
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the first time I was training at Move and Walk, I was afraid of everything, I was not independent although I've thought the opposite. 8th training period finished!!
Today was the last day training conductive education at Move&Walk - at least for now. It's amazing how the weeks just passes you by, time overall seems to have been rushed forward full on 2016. If I am to say something about the training at Move&Walk I can say that I've once again been stabilised. My left hand feels softer and with less spasticity, and I have also made some progress – perhaps not something really big, but when it comes to stroke it is common to only be focusing on the biggest of progress [learning gross motor skills/stand/walk/control arm movements etc] You don't think about the small progress and how they in the end are woven together into something big!
The very first time I came to Move&Walk I was afraid of everything, scared to fall down, tumble, stumble. I was afraid of balance walking on top of a tiny stone curb 10 centimeters above ground, and I dreaded falling head over heels forwards down to a ' fat boy ' [a kind of Pillow you use to practice falling right; that is, knees first and put both hands on ground to secure yourself.] I was afraid and did'nt dare anything, because I knew I could not/ or that I would seriously hurt myself - otherwise the health care system would have said or done something in the past instead of leaving me half finished for the rest of my life? Right? I could'nt even stand up on my feet when the starting point was on the floor - not if I did'nt desperately held on to something like a chair or whatever.
I've now visited MoveWalk 8 times, and each time I build a brick in the House of my progress. During my first training periods MoveWalk taught me to among other things
1) stand from the floor without any support, both rising onto my feet with starting point weight on the right leg and to rise up with weight on my left leg.
2) walk in the staircase without any support.
3) do different balancing walks, i.e., practicing and improves balance as hell!
3) open my left hand completely and thus be able to/learn to do lots of symmetrical things to with my hands.
All together has given me a more independent and secure life. I know now that if I'm out walking alone in town and tumble down I can stand up on my feets even if it would happen on a square without something to hold on to. During my visit at Move&Walk this past summer I reached another progress - without having to think about it – commute with both arms when I walk, like all people do. It was built an automatism, a reflex if you can call it that. This training period I've in addition to the stabilization in my former progress learned to move myself flowing from lying on my stomach to be standing on all four without pulling any knee forward. [a bit like half a push-up/yoga-exercise haha.] It becomes a more symmetrical motion where my whole body, and both arms takes the weight of me pushing myself up and back on all fours.
But the best, the absolute best about MoveWalk is how they've teached me, meet me and see me as a whole person, a complete personality.
The founder of Conductive Education was a Hungarian physician by the name of András Petö, who died exactly 40 years to the day before I suffered a stroke. [september 11th is a creepy date.] and the Pető Institute in Hungary is where the conductors at MoveWalk have been trained and educated.
Many times you hear how Swedish health care, physical therapists, medical doctors etc talks badly about Pető, both the Institute and the entire conductive education. They say things like "CE only uses methods from the 50 's and therefor it's not working... " and other nonsense to argue how the hungarians do not have anything to bring to the table so called, not when the swedish people have such a " exceptional" healthcare and rehabilitation. [HAH!] I get downright angry when I hear things like this.
Today I was talking with someone who has been part of my training group and suddenly he says he felt that this is where he belonged, and this is where he should have been allowed to come a long time ago. He also is stroke survivor, he also has a "landsting" who do not believe in CE. When I fought to get CE 3 years ago on national television I said the exact same thing!
I'm not surprised that physiotherapists talks badly about a training they don not know anything about, but to start assuming things just because the method comes from another country is really stupid. I got the rehabilitation CI therapy in the three rounds of 2008-2010 and the method comes from the United States. [incidentally, that rehabilitation sucked because it just made you frustraded angry lonely and it was only focused on one thing in my whole body/personality; my left hand and guess what---I did not get any better either.]
Anyway. I am forever grateful that I found Move&Walk and conductive education. I am grateful for everything that everyone at Move&Walk have helped me with ... without you I probably still dimensions very bad both mentally and physically, felt lonely, neglected and was in considerably worse condition within my disability.
I recently learned that my name and my blog was mentioned at the Center of Independence Congress in Budapest and that Chicago was interested in me continuing writing more posts in English! I'm super excited and I've already upgraded some new pages on the blog. I've also fixed to my portfolio at the Art link and will continue to translate my posts for you English-speaking readers.
I have found that some links do not work in the categories tab and will try to fix this as soon as possible. But right now I have quite a lot of work ahead of me. A painting that will be completed and an order I must begin to paint. But tomorrow I get to sleep late, and after that I'll finally be back at the gym! I've also gradually begun to learn to speak Hungarian since I plan to stay in Budapest the entire september 2017! [Jessicanak hivnák. Svédországból jöttem. Vegán vagyok!]
I'm thinking there should come two more blog posts this year, on Tuesday 20/12 and Thursday 22/12, but then I'll be taking Christmas break and later vacation in Malaga! If you have any questions or would like to write something else just do it in the comment section below. Also if you're a english speaking reader and you like to be able to read more of my blog posts in eglish [whether it's about stroke, PTSD, Borderline personality disorder, social phobia or anything else] let me know in the comments! Thanks for reading!
I have many times been asked this question and now I thought I'll try answering it as best I can. But let me start by giving you outsiders some insight first.
If a person after a stroke comes across as rude [and were'nt like that by nature before], it is rarely something the stroke survivor do with diligence and rarely they're aware of it. Thus, I mourned my body for many years after the stroke and I was'nt not allowed to grieve and did'nt get any help to reach any insight or acceptance [because the health care system where I lived then did not offer me this extremely necessary help.] and it was because of this negligence that my grief developed into a deep depression and with a pulsating hatred. I saw myself as a Misanthrope, someone who really hated humanity -everything and everyone. I hated because The-Healthy always tried to stress my gri grieving/tried to force acceptance onto me. Me not having any insight was'nt my fault. Yes, I was a teenager and naive as many teenagers are, but when you suffer a stroke and your life is torn in pieces and The-Healthy ones comes around nagging about "when I am going to be the person I used to be/ just accept it! Move the fuck on! / Get oer it!" it just escalates this burning hatred.
Acceptance is not you simply just deciding to shrug your shoulders and go about your day. Acceptance is something much deeper and only comes to you after you've reached insight. Do you get it? First insight then acceptance and then "evil Jessica" is slowly demolished. This is also not something that has to do with time. I was still hateful and mourned half a decade after my stroke. [and luckily took impulse initiative to move to Sandviken where I was offered a very good brain injury team.]
You may think that you have alot of insight in your stroke situation, you may be convinced that you've accepted it. But if you still have a pulsating greed and craving conviction that if you just train hard enough you'll become yourself again, then you have not reached acceptance. I'm sorry to say it, but you will never be who you once were. [unless you for some reason have had a minor stroke that did'nt affect your brain that much]. You've got a brain injury, that's how it is, and it will affect you for the rest of your life.
Then again, depending on how much quality of life you're striving for [inner calm and calmer outside world, joy, kindness, personal growth and love.] it will only be a small part of you. What you need to do is remove the greed and cravings from your situation. Of course I wish that I would have a non-brain injury-brain, but I do not allow that wish to become a craving that control my way of being as a person, not inside of me and my thoughts and not the way I inflect to other people.
As an outsider, family or whatever, there is not much you can do, unfortunately. You cannot just walk up to the stroke survivor preaching about how nasty they've become since the stroke, because the chances are that they're not a part of this nasty behaviors - it's the brain injury itself combined with lack of insight. You as an outsider is healthy in the survivors eyes, and if you would try to force insight onto them, force acceptance, it would certainly backfire on you. You as an outsiders don't know anything about how it is to live a life as functional and then instantly be disabled where both physics, the perceptions of the world, energy and much more suddenly is taken away from you and replaced with someone else [fictitious] persons body, mind, fatigue and behaviors knowing that you now has to live inside of that body [and get judged of it]
I'm not saying that every stroke survivor or brain injured gets to behave either way they want just because they now have something to blame, of course you have some responsability in your developing process. But how can you tame a wild horse if you don't even know how to ride?
What you as an outsider can do is to influence the stroke survivor, pointing at the direction of possibilites but it is the survivor who has to go there otherwise it will be like I said; a forced acceptance that is illusory.
I hope this helps someone out there, injured or third parties. For you are really fantastic although the word stroke now belongs to your vocabulary more frequently than before.
The first drawings where I tried to express my grief and the way my stroke feels like. 
My art today.
My body is not the one that is broken. It's my brain that must be rehabilitated. PHYSICAL THERAPY FOR STROKE IS WRONG!!
A physiotherapist job is to rehabilitate body parts that does'nt work correctly for different reasons. A broken leg or knee injury, back pain shoulder pain etc. Sure.. a physiotherapist can make a difference for this type of issues. But this is also the only thing several "Landsting" / counties have to offer us with a neurological injury, whether CP or Parkinson's or a stroke. I may have come out of the wheelchair to the three legged walking aid and finally the crutch through physical therapy when I was a newbie in my stroke. But it wasn't until I started with conductive education that I tossed my clumsy unnecessarily chunky crutch for a more independent time. Physical therapy is not for me and that's why I have'nt met with a physiotherapist for almost four years.
" strange.. very strange. Because I knew someone who knew someone who had a stroke and has been completely recovered thanks to physical therapy''
Oh really? That's great that your acquaintance had such a minor brain injury for that shit to be possible.
''Uhu... but the doctors wasn't even sure my friend would survive said that he would never be able to walk again!''
Oh yeah? That's good news! Incompetent medical care and eh.... Yes, stroke is a generic term for cerebral infarction and cerebral hemorrhage and to survive something like that is usually very uncertain. It was the same for me. What I mean is that, once again, you CAN not compare one stroke with another. You cannot expect that your brain injury will be healed by you practice physical therapy and exercise only the body parts.
Yes, my left arm and hand shake [ataxia] and are often not relaxed but strained and looks a little stiff and strange. But there is nothing wrong with my left arm or my hand. They are perfectly healthy. Yes, I am limping and when I walk it looks unbalanced and limping. But there is nothing wrong with my leg. It is the brain that is damaged, and then it's the brain I'm going to rehabilitate and how to do it when you've suffered a stroke is through conductive education. It's that simple.
For six years I was told to use/train/rehabilitate my HAND or LEG but never me as a whole individual, including my brain.
If a cerebral infarction has shattered your nerves which provides motor skills in an arm, it is surely the brain in itself we should rehabilitate to be able to use the arm again. Right? It's so obvious things that the health care system blinds us in the dark from or simply they just don't have any knowledge of it.
I've devoted quite a large part of the recent posts to really highlight the importance of proper rehabilitation after stroke, how CE is the very best I've experienced. But I would also like to emphasise the importance of the quality of life after a stroke, after a traumatic brain injury, after a negative statement about the severe illness. By constantly live in ' survival mode ' you miss out on so much beauty life otherwise provides. You don't ever get a chance to relax, no chance to live in the moment - this beautiful moment. Especially in my case where I also have borderline personality disorder and PTSD and brain washed disaster thoughts.
Next year, it is ten years since my darkest period in my life began. Ten years of which half was in constant survival mode, five years of unstoppable suffering. But it's a long time ago now and I find myself more and more in united form, how all that stuff was from a character in my book and I've come so far from that character that I time and time again forget my past history. An example is the social phobia I developed almost immediately after my stroke and who in the five years flourished like nasty weeds. I couldn't go outside and when I did it was terrible. I remember how I used to get severe panic attacks every time I would shop at the grocery store, how the sweat flowed and the pulse roared with fear. I remember how I NEVER dare to leave my apartment if I didn't had someone who was talking to me in my hands free. It feels so unreal to talk about it now because my life is not that way anymore. But it is clear that my phobia makes itself known if I've kept myself isolated a little while, how any former ''safety behaviors'' flares up. Are there any of you who also suffer from social phobia? Have you gotten yourself out of the mess?
I no longer see myself as a social phobia person but instead as the psychiatric clinic has written in my journals: 'borderline personality disorder, PTSD, recurrent depression with social phobic character '.
Second training day 3rd week at MoveWalk is now complete! Yesterday went quite splendidly. I managed to keep the wrist in a perfect location, managed to get symmetry in my movements, open my hand completely and take on challenges. Today was also good, even if I gets bothered a lot when my ataxia started in certain movements, and it is difficult to break by willpower or by thinking. But I'll reach a point where no longer ataxia has control over me, I'm sure. What I need to do is to relax and at the same time have enough strenght to break these involuntary movements. Both yesterday and today we did exercises in which all the body parts was moved but in different directions-to learn to separate the legs from the arms. You probably have seen it in infants, how arms and legs often spasm at the same time - like it sometimes becomes after a stroke. If I lie on my back and there's a task for the legs often the arm will follow the movement automatically [ex; pulls itself up by the elbow, something I don't notice due to loss of sensation and Visual field loss] yesterday I got the answer to why I sometimes automatically open my mouth when I try to open my hand under the more worse hand-days [something I have been doing for a few years now] There is an automatic reflex we all are born with but that disappears with age and after a brain injury might come back.
Tomorrow, I am taking time off from Move&Walk because I finally get to come back in a DBT skills training group on Psychiatry Clinic. Overall, I feel very healed by DBT but there are two chapters I feel I need to rehearse, regulate the feeling-chapter [mainly due to my abandonment feelings; typical Borderline] as well as skills to work/' be ' normal ' in relationships. What did you think of today's blog post? Let me know in the comments below!
EVERY STROKE IS UNIQUE! You can not compare one stroke with another. More abuot the conductve education at Move & Walk!
So my second week training conductive education at Move&Walk is soon to be over. In addition to the training I've tried keeping my schedule to a minimum this week, except for last Tuesday when I lectured at Hjärnkraft’s conference Att Leva Hela Livet [To Live The Entire Life]. Afterwards my brain was over strained with both endorphins and adrenaline but at the same time crippled by my fatigue.
[it wasn't until the lecturing day was over that I realized I had forgotten to express my different so called levels of fatigue, but I suppose I didn't remember just because my fatigue has become so much better since I became vegan last year]
Anyway I had some big trouble falling asleep Tuesday night, something that usually happens when I'm paralyzed by fatigue and at the same time hyper-awake in my thinking process - it's a mixture of my fatigue level number one and three. So it wasn't until after midnight that I suddenly recalled that I was supposed to see my shrink the next day. I texted her in pure panic and immediately swallowed three sleeping pills to get through the night with at least a few hours of sleep. I had to get up early for training Wednesday morning.
More about the training -
As I've expressed earlier, my stroke is somewhat complicated for any outsider to fully understand.
There are those who suffer a stroke, goes into rehab and afterwards live their lives as if nothing ever happened. They rehabilitate themselves, get fully recovered and move on. But what about the rest of us? We who keep standing still, stomping the same spot year in and year out, still fatigued and still more or less handicapped. Have we not trained enough? Are we lazy?
NO!! Absolutly not!
I speak about this a lot when I lecture. How not a single stroke is the other stroke alike!
The training I get at Move & Walk makes great improvement for me as a stroke victim. I reach a variety of progress for each new training period. But once the training is over I slowly become a little bit worse again over time - like a tidal wave recedes - despite the fact that I continue to use the tools I've received. And that's not because I'm lazy, it's not because I'm not motivated or working hard enough. It's because my stroke is unique and my preconditions are not as good as some other person who suffered a stroke someone knew and who managed to get completely recovered and bla bla bla.
My cerebral infarction and cerebral hemorrhage, located in the thalamus, the core of the brain, in the middle yet slightly to the right. So if "Lisa" has a stroke in the thalamus but slightly to the left her stroke is not at all like mine. The fact is that Lisa may have had strokes in the exact same spot as me and still are our conditions not identical. This is something that our health care system and society don't have any good knowledge on. You must understand that the brain is extremely complex and the tiniest millimeter plays a major role. Even the fact that there is a difference in the outcome of a stroke’s severity depending on if it was a cerebral infarction or cerebral hemorrhage.
I'm completely convinced that if I trained conductive education with a skilled conductor every day for the rest of my life I would become fully recovered. But even then I gradually would deteriorate when the training is done with. Furthermore the training is so tough that with my fatigue I wouldn't be able to perform very good every day for several years, I would crash from exhaustion and thus become even worse - probably even more unmotivated. So it is good to remember that if you train conductive education and you suffer from fatigue it is important to speak up if you become too tired. We want to train the brain, the body, absolutely. But it makes no sense whipping a tired racehorse, right?
As for now I do not feel any destructive pressure on performance which I’ve formerly experienced, must-haves within ten years, jobs or success in my stroke etc. I mean ... I'm 25 years old and I've decided that the only thing I'll strive for in my life is quality of life, feeling happiness and joy and do good for both me and my surroundings. I do not want my life to just be about hospitals and illness. I intend to live the way I am meant to live. Grandiose, stress free and when my next book feels to be written it will come to me.
Now it's almost Christmas and we've purchased a cozy christmas star lamp to put in our living room window and earlier this week we also had a new dishwasher installed (!)
Tomorrow I'll do the last training day of my second week out of four, and next week I start DBT again!
Do not forget to like this post. Or why not leave me a comment and tell me what you thought about it? :)
Even though it wasn't long ago since my last visit at Move&Walk this week's training of conductive education (CE) has almost punctured my brain, and left me powerless with fatigue you can't imagine. But I've also had a little too much on my schedule outside the CE. Everything from meetings with my osteopath and my new therapist, strolling around in Gothenburg and running errands that needed to be taken care off. All of this, the week after I trained in the gym for several days in a row followed by a miniretreat at a Buddhist temple.
My brain wants to scream at me to give up. The mental strenght that is needed in order to be able to practise CE is huge in comparison with the effort I “needed" to bring when I still was in regular physiotherapy.
A physiotherapist recives me as a stroke patient with narrow knowledge about the physical disabilities, their ground base and how to break them. Certanily physiotherapy can help some, but my brain injury is too severe [and was able to do way more damage than it should have if the health care system didn't fuck it up] for me to make any progress with just that. Only walking some steps in the phys's office or trying to move little wooden blocks on the table with a spastic closed hand, do a few hip lifted exersices and swing from side to side with an elastic band between my legs aint helping me on any level. The snooze button is running non stop when I see any type of physiotherapist. Lame and nagging motions where the physiotherapist asks me to carry out a certain task but then puts himself in my business and takes over until it becomes a passive motion and in long term doesn't help the exercise a bit since it is carried out in the wrong situation and during wrong circumstances.
CE is all about showing the damaged side how a motion is done in a proper way, doing so by including the whole body - even the undamaged part of it. You do the movements along with the injured side so that the undamaged one can be a guide and finally the movement is done only with the injured side of the body -- and this is repeated over and over again during four weeks' time.
The core in CE is that if you can do it in a lying down position you can do in sitting and finally in standing and walking. The movement done in a lying down position reminds alot of a baby's movements lying on their back or abdomen, and requires huge effort since we activate new nerve paths, we use a part of the brain we have'nt used in a long time - often because the hospital made us “realize” that we can't. This is also one of the reasons why I highly recomend CE instead of physiotherapy. Their spirit is about never giving up, to find solutions until I can carry out a certain task as close to the normal movement as possible, and if it does'nt work now it'll work next week. [remember how I was challenged to walk on a small gymnastic bench, narrow and nasty at 2013? And how I after three weeks finally made it?]
Three years have now passed since I stopped going to physiotherapy. My life will not just be about surviving or in some passive aggressive way try to overcome my stroke. I've tried that and it broke me utterly and completly, suffering mental ilnesses and neglect until I got the chance to my first visit at Move&Walk and was told the magic words;
“You are ONE whole person.”
I am not at Move&Walk only to rehabilitate my left arm or my leg [as physiotherapists do]. I am a whole body and a whole person and it wasn't until that very moment my healing took a jump start into life quality success! What I am saying is that Move&Walk not only is the very best for me purely physical but also psychological.
Even though at this point I am familiar with the exercises and know them by heart, I know the rate and I've learned alot about anatomy, this week's training [that has nevertheless been pretty calm, as usual the first week] has totally taken it's toll on me. I come home with a lead heavy body and disappears into my carefully arranged purple calm bedroom, put a towel over my eyes in order to calm down and reduce every demanding perceptions and stay that way until my eyes no longer feel like they're on fire by fatigue [something that can take a very long time.] Anyway this is a good thing, that I become tired after the training, because it implicates that I actually used and challenged my brain in ways I'm not used to but need to. Brain exercise.
The winter darkness does not make my fatigue any easier but smears its blackness over my blank eyes, pressing the eyelids down even though they're open and need to be. But it feels wonderfull to be back at Move&Walk once again, to be able to do CE, to reach another level of progress and to feel the challenges, and to be just the right amount of sufficiently pushed in the right directon. I am happy that I was told about CE and Move&Walk in 2013 because I do not want to live on only survival mode, do not want to enter every life task with a bitter and passive aggressive plagued attitude. I wish to be the whole person Move&Walk has taught me I am and therefore this is the only place for me!
Today I have taken a free and easy day after the training. No errands, no meetings and ABSOLUTELY zero must-do-things. My plan for the evening is to breathe and rest the brain. Tomorrow we do the last training for week 1, and on Saturday I finally get to sleep in so that I later in the evening feel resten enough to see one of my favourite bands throughout all times - VNV NATION!