Jump to content

An Open Letter to My Doctor, friends and family and strangers I encounter:


Recommended Posts

Just because they sent me home and told me to heal doesn’t mean I am healed. My head still hurts. I still feel like something is missing but can’t tell what. I know it was a relief for those who know and love me to have me sent home, but to be honest, that’s when my quiet hell started. Everyone looked at me with anticipation, waiting to see if “I” was there or if I was somehow different. When I spoke, people smiled and said I looked great! It was an act. I was never okay. I pretended to be for you all. I wanted to be. I really did. However, my reality is very different than fine.

It’s been 3 and half months, 107 days exactly since my brain mysteriously started bleeding. They don’t know why. Nor do they know why it suddenly stopped. They didn’t find an aneurysm but they also said it didn’t matter anyway since the bleeding stopped. Which brings me to my follow-up doctor.

Doctor, you are surely good at what you do but I beg to differ on my prognosis. You see, contrary to the textbooks’ statistical analysis of this type of hemorrhage, I do have cognitive deficits. Just ask the people who live with me. Ask my husband who witnesses me wander aimlessly around a supermarket because I can’t tap into the organizing and processing part of my brain. Tell him how I “should” be 100% when just in the last month I have almost burned my house down and killed my family no less than 3 times. Tell me again how the pain in my head doesn’t make sense. Roll your eyes again when I report how I am falling and unable to move my left leg very well. I love when you do that! By all means, dismiss me. I must be crazy even though your own neurological exam shows a significant weakness on the left side. When I cry in your office I really like it when you put your pen down and look at your cell phone, especially when I am divulging how difficult my life has been and am asking for help. I don’t blame you. You don’t know me. You don’t know that I am someone who has never complained to anyone or that I never ask for help because I’ve always been “the strong one”. I get it, your other patients, the ones in wheelchairs, they are in much worse shape than I and therefore must warrant your full attention more than me.

Speaking of that wheelchair, I did start out in one but you never met me until weeks after I was released from rehabilitation. Hell I couldn’t even move my head without puking. And yes, I still have nausea every day… every time I move. No I don’t actually puke anymore, unless my headache is really bad, so that must mean I am better. Right? Wrong. I walk like I am drunk.

I now have to endure the glances and stares of strangers. I walk funny. It’s not a limp as if from an injury. It is just funny. I must appear either drunk or like I just pooped my pants. It takes every ounce of energy to walk “normal”. Even just walking a few feet cause me absolute exhaustion. Speaking of which, exhaustion is now another thing I fight daily.

I’m not talking about the kind of tiredness you feel when you’ve stayed out late one night and gotten up early the next day. I’m not even talking about the type of exhaustion new parents feel when they are so sleep deprived their body shakes. No. What I am talking about is a fog so thick and so all consuming that when it hits, if I try to fight it, I puke. When I try to fight it, the vice grip squeezing my brain starts tightening to the point of dizziness/lightheadedness. That feeling you have seconds before you pass out. THAT. Oh yeah, it doesn’t come at convenient times like when my son is in school and I could pass out. No. It comes just as the clock shows me it’s time to pick him up. Yup. I get to drive when my eyes can barely stay focused. Why don’t I get help? Good question. The answer is simple. Statistically, I should be fine. 100% says my doctor. So there is no need for help. So I cry and I pray.

No one understands. My husband has done the best job of trying to but really, no one can. At least no one who has never lived through the terror of facing death. Yes. Death. And no I am not being dramatic. Death is the outcome most expected when you have a subarachnoid hemorrhage. That is why they put in you ICU. THAT is why the doctors smile broadly when they shake your husband’s hand after the first 48 hours. THAT is why the neurosurgeon can joke with you that you get to keep your long hair. How you ask? Because doctors could not be so relieved and happy when you pull through if they weren’t preparing for the worse and now relieved it won’t happen to this patient. The lack of death is what allows them to get a bite to eat before their smiles fade and they move to the next “head case” who needs their attention.

I can’t show you my brain. My “disability” is invisible. If I stutter or stop mid sentence, don’t try to finish my sentence or guess what I’m trying to say. You will only make me forget. If I walk funny, try not to stare or point to my face. If I cry to you I need help, ask how you can. If I tell you my head hurts, empathize if there is nothing you can prescribe. And if I am sad, allow me to be.

So if you see me, whether stranger or loved one, be kind and remember, it IS all in my head!

  • Like 1
Link to comment
Share on other sites

I love this, so well expressed & I understand every word & you have my empathy

I won't offer sympathy as that does you no good but I feel your pain & frustration. I am lucky in that my gp & hubby have been pretty understanding, it took a while for hubby to 'get it' on the fatigue thing. My friends still don't get it but they do try. Most of us look fine but aren't & people forget what you;ve been through cos they can't see the scars or in your case the damage.

Be assured we 'get it'. I don't know if you are planning on showing this to other people but if you do I hope they understand a little more

Take care & it will get better xxx

Link to comment
Share on other sites

Oh my goodness Susan, I couldn't put this into words like you just have, but I can so relate to all that you say! I have also had a NASAH (late July) and been trying to come to some understanding of being told the most devastating, life threatening thing has happened, but also that I should be fully recovered and am very lucky and to 'get on with life'.

I don't know how to feel. My walking is also strange, I've been accused of being drunk in the local supermarket at 10 am in the morning (told I should be ashamed of myself). I know that feeling of being 'observed' to see if you are still 'you'. I am told I will recover 100 per cent, but am not entitled to rehab or even a physio or OT assessment. No one asked if I would be ok at home before I was discharged, or even if I had anyone at home to help me. The lady in the bed opposite was recovering from a planned hip operation , had Physio, OT and two car loads of equipment......I am not recovered yet, but there is no help or advice. Most people die when they have a bleed like mine, so what advice can I be given? There aren't many survivors, so there isn't any evidence to draw on it seems. I seem to be greeted by a curious mixture of horror, awe and boredom.

My GP is lost and thinks I should be off work 'for a year', but that I 'look better than most people after an SAH'. I'm not sure what I'm supposed to do in that year.....

The hardest part has been understanding why the people I care about around me are terrified and would rather I stayed at home in bed all day, but desperately needing to get my life back on track. If I take small steps, I'm accused of 'overdoing it' 'pushing myself' and risking a relapse....but if I do nothing what will that mean?

In the end, we have to make our own decisions. Some of those will be good and some will turn out to be wrong. We are an unknown quantity. That is why I thank God for this site and the chance to be amongst others who share these feelings and understand. If I try to take a step, but fail part way, my fellow BTGers are able to see the success in that failure.....I feel them willing me on. I tell myself not to be afraid.

Thank you for your eloquent and brave words. Never forget we are here and in this thing together. We have a lot of differences in our lives, our coping and our recoveries, but we have far more in common. You are not alone.

Julie xxxx

Link to comment
Share on other sites

Susan,

You was on a downer when you wrote that post, hope you feel better today x

You will get there but it's such a long haul.

I know what you mean about people saying "haven't you improved" when you are just being well for them.

My Sisters say to me "Well done Win you will prove the hospital wrong" and to a certain point I have.

Now wipe those tears and we shall go out walking, bent over and stooping, back killing us but with a smile on our face.

Forget Doc and what they say, they do not know the real us.

Keep singing and smiling when possible now head up shoulders back and keep going.

Never give up and laugh when possible.

Good luck on your recovery journey.

Love

WinB143 xx xx

Link to comment
Share on other sites

Susan, you have expressed the pain and frustrations experienced by so many of us, extremely well.

My first visit to the GP following my release from hospital was to see a relatively junior GP (and my daughter had to battle to get even that appointment for me!).

I remember walking into his consulting room and seeing what can only be described as a look of fear on his face. He clearly had no idea how to treat a SAH survivor and was visibly relieved when I stood up to leave the office. No suggestion of any follow up appoinments was offered, it seemed to me that the message was clearly......you are alive and for that you should be grateful.

I have since had to meet with other health professionals for issues not related to the SAH and, without exception, whenever I mention the SAH I am met with an expression that ranges from fear to respect. The one thing all have in common is their reluctance to engage in any kind of conversation relating to the SAH.

We are survivors, and we face the fear every day of our lives. We should be proud of our achievements, no matter how small.

As others have said, you are not alone in this.

Wem

Link to comment
Share on other sites

Susan,

I know exactly where you are. I felt like I was pushed onto this island alone with nothing but me to figure out how to get off and swim back to the land of the living. But how? It is hard. I had a wonderful neurosurgeon and he said to expect 100% recovery but he also said he did not know when and I would most likely suffer from headaches but that would subside. They come and go and come more when I am tired or the weather is changing.

There is information out there about SAH and NASAH but it is statistical and I have noticed much is not from the U.S. Even the stroke sites (American Stroke Association and the National Stroke Association) do not have much information about SAH or NASAH. I did send my story to both and the National Stroke Assoc published it. It is up to us to get the word out that we are here and it is not easy!!

My husband has been great but he is learning as I am. I pray everyday for strength and faith and that has pulled me through some of the hardest times. This site has been so wonderful learning that the weirdness that goes on in your head also goes on in others as well.

I am almost six months and I do know at three months I just simply wanted to be well and that was not the case.

I did find a new neurologist (I had my NASAH five hours from home) near my home and he has been wonderful. He told me to call whenever I needed to talk and that this team would be there for me. You need someone with a heart and that cares of you as a human being.

It is hard to give yourself time but time is what we have, thank goodness. It does get better.

iola

Link to comment
Share on other sites

I am thankful for this board and for people who are also dealing with the same issues. I was unsure if I should post that "letter" here but I needed to say those things to someone and I didn't want to hurt my friends and family's feelings.

I don't think I was down when I wrote it. They are things I've been thinking for a while now and to me, this is my new normal and least for now. However, I do cry often. The doctors did say the emotional changes are normal after any brain event and in most cases they level off. Also, I am now a slow talker so writing is easier.

I'm so sorry for Julie (I think that was the poster) who received NO outpaitent care!!! That is horrible!!! I credit my recovery and to me I am pretty well recovered considering where I started, (even if I have a ways to go) with being able to be in Kessler Institute for Rehabilitation. It is where Christopher Reeves stayed after his spinal cord injury. They were so wonderful.

I watched other patients come in after serious strokes not able to walk or talk and within weeks do both! After release many of us who were inpatients together also had outpatient neuro PT at the same time. We cheered each other on and even cried when we saw one of us walk in even if it was slower and labored! I made a point of introducing myself to the care giver of whomever I noticed an improvement in and relay to them how far their loved one had come from when I first met them inpatient.

I will never forget the woman in the bed next to mine in the hospital. She had an inoperable brain tumor which turned out to be cancer. She was 76 and had been married 55 years. Her husband came every morning and stayed all day. They were the happiest people I ever met!! One day when I was as low as I could be, she got her cancer diagnosis. I could hear the doctors preparing them for the worst. Instead of the reaction I would have had, this couple exclaimed "That's Wonderful!!!" The doctors asked them did they understand and the couple replied, "Of course we do but it's wonderful you know what it is and now we can get started on treatment." Every day, the husband of that woman sat with me when his wife took a nap or had to go off for a test. He held my hand when I was crying in my sleep. He sat my husband and I and told us the secret of his happy and long marriage. He told my doctor when he felt I was unable to speak but needed help. Somehow, I feel the need to honor that couple in my own life. I still am working on it but eventually, I will figure out how.

Okay totally forgot where I was going with that story!!!! :lol::lol::lol: My brain just took a vacation!!!!! Sorry!!!!!!:crazy:

Link to comment
Share on other sites

Hi Susan,

Please don't feel sorry for me, I am ok.

I was cross that no rehab was available for me to start with. But then I got a grip! I used to go to the gym with my daughter before my SAH (it actually happened there) and about a month after it happened asked one of the instructors to do some personal training with me. He has really helped, setting me exercises to practice and working towards goals etc. My family have been supporting me with practicing. Maybe if I had received NHS aftercare I would not have felt so in control of the goals I set etc.

Somehow we all find our own way...maybe I had to get angry to get myself going again? I know when I first posted on this site I just felt terrified the whole time. I'm glad that has subsided a little now....progress.

Your words were so powerful I sobbed when I read them, I could relate so much to what you were saying. It's such a relief to be amongst those who understand isn't it?

Thinking of you, and wishing you well with your recovery.

Julie xxx :wink:

Link to comment
Share on other sites

This is me!!!!!!!

Cannot believe that somebody has put how i am feeling into better words that I could........

Has made me feel better :) xxx

I'm glad you feel better! :redface: I really did not expect any response. I feel more confident the more I read on the forum.

Thank you all so much just for being out there somewhere in the world sharing how I feel!!

Link to comment
Share on other sites

This is beautifully written and so accurate! I'd love to show this to some of my colleagues and even friends who seem to have decided that I am fine now because after all, the sah was 2 years ago. Perhaps my GP could also take a peek as he is of the 'you have survived, what more do you want' variety.

Link to comment
Share on other sites

This should be stickied because I think it is so beautifully put.

We are not statistics we are people. Every doctor needs to hear that again and again and again. A few things I would love to be required to be removed from all doctor's vocabulary:

"You should not be feeling ____ at this point."

"I don't know why this still hurts." unless followed by "but I'm sure as heck going to find out what's going on!"

"None of my other patients have had ___ this late."

It makes you feel like you're "doing it wrong"

I also wish that people would understand the pressure they put on us to "feel better" when they say things like "Well it could be worse!" or "At least you can still ____"

Yeah, it could be worse and we know that, but doggone it takes a long time to mourn what we're no longer able to do. Plus, I don't know about you guys but I seriously DO feel guilt at times because I know I'm lucky to be able to do the things I do but at the same time I still am frustrated at the limitations I have.

Like I should feel lucky ALL the time.

But they mean well so I don't blame them. I'm just happy we have here to learn from each other because it helps when you get out and you have no idea why you feel the way you do, and the doctor releases you with a "Ciao" and "see me in six weeks" and "go back to work next week" and no information about what it's like after a stroke. Then you have one doctor who says yes you had a stroke and another says, it wasn't a stroke, and you just want to say galloping ghost on a great white! Call it Jehosaphat for all I care, I have a headache and I keep running to walls! Then that doctor is too busy following protocols to bother to ask you if it even HURTS or how or where or why or when.

Keep looking for a good doctor. They are out there. I think I have one now, thank heavens.

Link to comment
Share on other sites

All of this is true. Here's an example: My boss wants me to fly next month for a meeting. That would mean getting on a plane and flying and staying in a room alone. I am no where near ready for that. Frankly, I'm scared. When I told him he said, "Well, what does your doctor say?" Who cares what my doctor says. It's my head, my brain, my body that has to deal with the consequences!! Urrr.....Made me mad.

I agree with Teechur, I do not think most are purposely being unkind, they just do not understand and never will until they go through it themselves.

I know that I am blessed and thank God every day for my life. But, just like what you said, Susan, something is missing and it is hard, if at all, to explain.

iola

Link to comment
Share on other sites

The guilt is the worst part of it all. In the hospital, I was overcome with guilt because I was alive but feeling sorry for myself. I was guilty because I felt like I should have an Oprah moment and suddenly do something incredible with the new life I've been gifted. I still feel guilty because "my head shouldn't hurt" but it does.

I blame Oprah, Dr. Phil and all those damn "feel good" TV shows about inspiring people who go on to save the world after adversity....The reality is Angels did not come down from heaven and blow trumpets when I was released from the hospital. I went home and vacummed up dog hair. Then I got ****** off at my mother for letting my son draw on the walls while I was trying to rest.

Yup. Nothing changed. I wasn't suddenly some Eat, Pray, Love saint..... I was still me. That revelation was so disturbing to my mother that we fought over my not "helping" her enough. She was supposed to be there to take care of me and my family so my husband could go to work. But she was expecting a saintly person to float through the door, she got the same old ***** of a daughter.:lol: She stormed off and I've been without help ever since.:shock:

Link to comment
Share on other sites

OMG you hit the nail on the head. I feel guilty for not being a saint & I feel guilty while others (better people than me) didn't make it.

I am trying to be a better person but hell its hard!! Some of my guilt makes me angry at everything (hubby, son) & they don't understand why I take it out on them :(. Almost every day I feel guilty I am not the person I used to be & the mum I used to be and if I could change that I would in a heartbeat.

All we can be is the best us we can be now x

Link to comment
Share on other sites

What I'm beginning to figure out is this....... While we are all searching for something profound to be the meaning of life, the true meaning of life isn't found in the miraculous or amazing but in the mundane. We are all here still. We all went back to being moms, dads, wives, husbands, friends, brothers or sisters and that my friends is what it is all about!

The dog poop on the rug, my son's possible autism, feeling like .......that is the meaning of my life. I'm here to carry on, to live it. I get to experience this life. My life and that is the miracle. Perhaps the SAH wasn't to meant to make us worthy of an Oprah appearance or a headline in the newspaper, but rather to remind us that we are here and our lives matter.

Although, it would have been nice if I had woken up amazing and skinny! :lol:

I spent last night with my phone in my hand waiting to call the ambulance. My head hurt so bad I was scared to death, it was happening again. I managed to talk myself out of an anxiety attack by reminding myself I just had an MRI a month ago and it was fine.

It was probably a run of the mill migraine from overdoing it and trying to pretend I'm well. It was a wake up call to not take this life for granted. I am taking for granted my body will always do what I ask of it. Clearly, my body has other plans which include staying in bed.

Link to comment
Share on other sites

Susan~

Bravo to you for venting. You all are so much further ahead with this process than I ever was at this point. I thought I was being over dramatic and a big baby. That I was perfectly fine and just going nuts. It has been 4 years and I am just now finding answers. It amazes me every day, how NOT normal I am compared to the me before. On the outside I am 100% the same person, but like you said, connections in my brain are fried!

You would think that these doctors would spend more time researching the after effects and recovery. So little is known. Or at least , listen to what you are saying, even if there is nothing they can do. Post it notes are my friend. I make to do list, every day. If I don't, then I am lost and unable to complete a task . My mind bounces around from here to there, and I have to focus on one thing at a time, marking them off as I go.

I have even been guilty a time or two of writing a note to remind me of why I am going to a room. I get sick of not remembering. Conversations on some days are harder than some. I will be in the middle of a story and forget what I am saying. Typical things you wouldn't expect of a 34 year old. It does get better with time. It does get better when you realize that it is normal . The crying gets better when you honor that it is part of healing , and it is okay to let it out.

The hardest part of it all, explaining all of it to your loved ones. They want so badly for us to be ok, and maybe on the outside we are. How do you get them to understand what you are going through in your head? I will never forget the day my husband finally listened to what I had been telling him all along. I feel like something is broken in my head. Like my brain is misfiring, and not making connections as it should with emotions , decision making, stress....He started searching and found this site. He now understands. Let your family and loved ones look at this site. It will help them understand what you are going through.

He is so much better now, in dealing with me .

Link to comment
Share on other sites

Look normal, friends and family just can't understand why we aren't'. I now do tell people I have had an SAH, if I don't appear to have grasped what they are saying, otherwise they think you are starting dementure!

What is the hardest thing, is that I keep forgetting instructions I have been given and people are not very understanding when they have to repeat themselves. I used to ride a horse regularly before my SAH, my balance is poor so I have taken up driving, I used to drive when I was young. There is a special way of holding the reins,, I know in my head how to do it, but the message to my hands just suddenly won't go! Difficult to explain. My mind knows but my head will not send the instructions.

I have a friend in wheel chair, heaven forbid. I was in the same position, but as she always says, people can see her disability they can't see mine, so tolerance of our problem especially after a year, is understandably a lot less.

Keep going Susan, it isn't easy, but make up your mind you are going to beat it. I have set myself lots of silly little challenges, it does help. Love Jill.

P.S. One challenge to use a computer, I never used one before my SAH through choice.

Link to comment
Share on other sites

Just wondering out loud here.

Since with our 'special' type of SAH, the literature says that we 'should' recover more fully than most, that doctors do tend to dismiss our concerns in the beginning because they 'know' we will get over them. Well, some of us do and some of us don't. At any rate, at this point, we are going through whatever we are going through and that is everything.

We do not live out lives in the future. We are here now, suffering. I think the mind set of the ones that are supposed to care the most about us, is totally wrong. They need to get the 'complete medical recovery' out of their heads and deal with the patient's presentation this day in their office.

However, since this is not reality, we have to look at they're actions and reactions in that context and then we can understand better. I also know that I didn't begin to feel mostly normal until 20 months, so there were many times when I wished that other people could really help me and they dismissed me as well.

I don't need their help now and realize that what I needed most was reassurance and time. Lots of time. My outlook on my life also under went many transformations as well. I am content at this point and often times happy that I had NASAH.

~Kris

Link to comment
Share on other sites

Kris,

Good for you, I have noticed the change in you since we both came on here.

You are more like this Ready? (tell me if I have got it wrong).

You were sad at first but now you seem "So what I made it yeahh".

I might have it totally wrong (usually do) but you seem happier than the early days.

What ever you are doing it is working. Keep it up xx

Love

WinB143 xx

Link to comment
Share on other sites

I used to ride a horse regularly before my SAH, my balance is poor so I have taken up driving, I used to drive when I was young. There is a special way of holding the reins,, I know in my head how to do it, but the message to my hands just suddenly won't go! Difficult to explain. My mind knows but my head will not send the instructions.

I completely understand this!!! Before I was an organization queen! I was known for my ability to organize data and documents. Now, I need to organize all the medical bils, my son's special education paperwork and other "routine" matters and I find myself sitting there not even being able to get started!

By the way, so jealous of you driving! I miss horses. I used to ride but my spine had other ideas and my doctors forbid me to do it again. That was about 20 years ago but it's still in my blood.:biggrin:

Link to comment
Share on other sites

]

Kris... I think you hit the nail on the head. We don't live in the future and the doctor's only know what the text tells them. Our kind of SAH should present with no issues. I'm only 4 months out so I'm trying really hard to adjust my outlook on life also. I know I need to make changes and I need to accept the "new" me and make peace with it.

Link to comment
Share on other sites

It is so interesting how collectively we say how we are all feeling at times.

What really hit me was the comment about the wheelchair. I was having a really bad day on Sunday and I really just wanted to stay in bed. However, we were celebrating my husband's birthday. I was angry because, once again, my head was intruding on my ability to make plans and execute them.

I told him that in some ways it felt almost harder to have this sort of healing because some days I'd be able to do things, and then people would think I should be able to do them EVERY day. Then on bad days the depression can hit SO hard.

We used to joke that my "Lifetime Movie" would end with me crossing the finish line of the New York City Marathon but the truth is, there are days that are great and I'm out there doing stuff and feeling like "suck it brain!" and then there are days where I'm shuffling along hugging walls wearing sunglasses wondering if I should shutter my business and quit my job and how would we live if I did that. I had to laugh, then, when I saw you guys writing about "Oprah" moments. Nope, it isn't like that.

What's it really like? It means your loved ones have to upend THEIR lives and put up with "Not today and maybe not to tomorrow and probably not the day after" and thank heavens if you don't have kids because it's hard for them to understand. I find myself resentful that someone in my family right now has (thank the good lord) a very early caught form of breast cancer and the entire family is wearing pink ribbons and I'm thinking "Where was my red ribbon?"

A friend reminded me that I didn't complain, and in fact understated it and kept saying it was all okay, nothing, in fact. People "get" breast cancer is bad. They don't get "brain bleed" or "subarachnoid hemorrhage". That sounds like a pregnant spider or something. They assume that if you're talking to them without drooling, you're okay.

Often I tell them, and they immediately say "Oh but it looks like you're fine now..." so then it's "Do I say, 'for the most part' or do I really tell them or does it matter?" and of course what they WANT to hear is yes because they don't want to hear that a super health conscious 47 year old could have a stroke, especially if they are NOT super health conscious.

It's having a million things to do and the brain power to barely do two. It's trying to figure out when in your week you can slow down, realizing you can't, and just powering through anyhow. It's having to call for a ride because it's not safe for your to drive. It's being thankful you're alive one minute, and wanting to kick the teeth out of the next person who tells you "You should just be glad that you're alive." because it's not for them to tell you how to feel.

Then it's feeling guilty for feeling that way. It's all the little things you can still do like snug your puppies and enjoy your husband and the changing of the seasons and good friends.

It's just life, but with some extra spice thrown in. Sometimes I love it and sometimes I just want to go jump in a creek. Fortunately most of the time it's the former.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...