a losing game

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I tell her the Buddhist parable of the mustard seed – the one that my dear friend Judith shared with me so long ago now. The story of the woman who has lost her son – who believes that she is completely alone in her grief. The story in which the Buddha commands her to collect a bowl of mustard seeds – each seed, he tells her, must come from a house that does not know loss. And so she goes from house to house in her village, asking for seeds. And the villagers feel for her and offer them readily. But when she asks if perhaps a son or a daughter, a father or a mother had died in their family, each and every one answers, Yes, we have lost a beloved.

And she discovers that there is no house – not a single one – that does not know loss.

Katie is rapt.

~ from my perfect date – Feb, 2012

*

No matter my good intentions to sleep each night, at sometime during the wee hours, I find myself keeping a vigil at my daughter’s side. Until two weeks ago, I let her sleep alone without a second thought. But I can’t unknow what I know now. And what I know now is that while my daughter sleeps, an electrical storm rages inside of her precious head. What I don’t know yet, and may never completely know, is what that storm looks like, and what kind of damage it leaves in its wake. Scarier still is that I also don’t know yet (and may never completely know) what form that storm may take when the winds pick up without warning – when stressors weigh on her defenses, when hormones lay siege on her already overloaded system.

For me, not knowing means being afraid. It means sleepless vigil after sleepless vigil that bring with them fruitless exercises of Please God, make it stop and Why My Girl? And further down the road, deeper into the valleys of the night, the thoughts swirl about in the dark – about the relativity of pain – and fear. About how we treat one another – about how we construct and fortify a dangerous competition of who hurts the most and whose burden is the heaviest. How we don’t see just how much energy it takes to play a game that no one can ever win, and in which everyone loses.

The other day, Katie and I talked about forgiveness. We talked about how people who have harmed us — really, truly harmed us — don’t deserve a place in our hearts. And how, until we forgive them, until we let go of our anger, we’ve allowed them to dwell within us. It isn’t until we forgive *them* that we unburden *ourselves* of their presence within us. Forgiveness, I explained, is not a gift to the one being forgiven nearly as much as it’s a gift to the one forgiving.

And so it is with the weight of insistence that our pain is greater than anyone else’s, that the world’s travails pale in comparison to our own, that no one else could be as worthy of help – or pity – as we are, comes our own destruction, and the destruction of community. Comparison takes energy. Insistence is exhausting. Judgement is toxic.

And internalizing all of that, even when — or perhaps especially when — it’s inverted back on oneself, is disastrous.

**

I wrote earlier about feeling a searing sense of survivor’s guilt. About how it appears that once again, in the middle of a potential nightmare, we’re dealing with one of the least awful versions of something that might have been really, really awful.

That should have been an absurd thing to write – to feel. It should have at least sounded like a completely inane reaction to the situation. But no one batted an eyelash. Because feeling guilty when we dodge a bullet is the byproduct of this crazy paradigm that we’ve all tacitly agreed to uphold. Guilt is the successful internalization of the competition of suffering.

We live in a place where we can access some of the most highly trained, specialized doctors in the world. We have insurance that allows us to see them. Cars to drive to their hospitals. Sufficient money to pay their bills.

I know what all of that means.

And I am far more grateful for it than I am able to adequately express to you. God knows though. I tell Him every day.

In the meantime, it’s why I write and why I sit down with politicians and why I jump on flights that I can ill-afford to Washington. Because I get it. And I appreciate it. And I believe, more than I believe anything else, that every child — every human being — deserves access to all of those resources, to all of that care, to all of the HELP that we have when the shit hits the fan.

But no matter what I say or where I say it, and no matter HOW I say it, someone is bound to point out that they have it worse. And undoubtedly, they do. By a lot. I don’t know how to tell you that I understand, but I really, really do. I live and breathe and dream the stories of those in and around my world. Children and adults struggling to communicate their most basic needs, engaging in disastrous self-injury, smearing and eating their own excrement. Fighting and dying of diseases that make no damned sense. I take it all in. Every morsel of it. I swim in it. Sometimes I drown in it.

And I try, my God, I try, to make it better where I can.

But so too, it has to be okay for me to say that I’m hurting. That I’m scared. That the word epilepsy is terrifying. That I feel like I’m living through the entire process of diagnosing autism again – of digesting what may have always been but that now we know. Of figuring out what it means, and how to help our girl. That this time, it’s different. That this time, there’s no moment when we’ll find out that it’s not really all bad. That, like autism, its challenges come with gifts. This is epilepsy. The only gift I can find at the end of this tunnel was the sheep that the tech gave Brooke after her EEG.

But to the point, it doesn’t matter what it is – it has to be okay for me to say that I’m scared. Not for me, but for everyone whose pain and fear and uncertainty are just as real as anyone else’s. Because IT’S NOT A COMPETITION. Because every one of us lives here at some time in our lives. And until it’s okay to say, “I’m scared,” or, “I’m hurting,” without the certainty of someone somewhere shouting (or quietly, snarkily implying), “You don’t know the first thing about fear!” the people who need help won’t ask for it. The people who are desperate for support will be afraid to tell anyone that they feel like they’re drowning. because somebody else’s water will always be higher.

But we all know that we can drown in mere inches of water when we can’t find the surface.

So it has to stop. The idea that a parent of typical kids ‘has no idea’ how hard it is to parent a kid on the spectrum. That a parent of one kid on the spectrum ‘has no idea’ how hard it is to have TWO kids on the spectrum. That a person with Asperger’s can’t possibly fathom the experience of a person severely disabled by the challenges of classic autism. That someone without children could never have pain and heartache of their own every bit as real and deep and life-changing as a parent’s.

IT’S NOT A COMPETITION. There’s no prize for being the worst off.

But there ARE prizes for the realization that we’re in this together — support, love and a fighting chance.

I’m scared.

*

Ed note, I’d been rolling this around in my head for a week or so before stumbling upon Landon’s post referring to Michael John Carley’s thoughts on what appears to be essentially the same topic. I purposefully did not read Mr. Carley’s words yet as I wanted to formulate my own ideas first, so any similarities are coincidental. I am, however, going to read it now. Or soon, because now I’ve got to get in the shower and get ready for work.

Ed other note: I made the picture above before seeing that post as well. Great minds, I guess. 🙂

55 thoughts on “a losing game

  1. We are all scared…But once again you have hit the nail squarely on the head. This is not a competition about who has it worse…This is a team sport where we all need to help each other to accomplish a goal.

  2. I’m only sorry you had to write this, Sweetheart. You have every right to be scared and it can not become a competition.

    I love you,
    Mom

  3. We are all blessed to have you in our lives! Eloquent, realistic, passionate, only the beginning of a litany of adjectives to describe my sense of you! Thank you!

  4. Wow! I needed this today. To tell me it’s ok. We all have a right to the feelings we have in situations. Thank you! And prayers to you and your family during this scary time.

  5. In reading some of your other posts that were specifically not about what you are going through, I had this twinge that perhaps you were trying, for the sake of your readers somehow,to not dwell on that thing that is likely consuming your every thought right now. This is scary, whether or not five million people have done it before, whether or not it is paid for by insurance,whether or not it is as bad as it could be. Because this time it is you and your baby girl. We have dodged so many bullets with our own little girl, and each time it has left me feeling exhausted, grateful and, yes, guilty. That teensy little blog I have has been a lifeline, a place to yell and scream and cry where my children won’t hear me. You deserve to have that space, free from criticism, free from competition. Please don’t be afraid to share that with all of us if that is what gets you through. We want to be here for you, as you have been there so many times for so many of us. We are still praying for your sweet girl every day. I am so sorry you are going through this.

  6. I have one true friend who knows how to respond to my doubts and fears. It’s embarrassing, actually, to vent to her. I don’t need her to point out the “unwinnable”
    competition…her situation trumps mine, any day, any time. Yet, because she has walked those dark and lonely streets of doubt and fear and guilt, she gets it. She really, truly gets it. She looks me straight in the eye, and she says, “I don’t know how you do it. What you do every day is really hard. You are such an awesome mother. Your kids are so lucky to have you. You are such an incredible person. And I am here for you, sister.” And it is like the clouds part and the sun bursts forth…and my tears burst forth as well. I am so grateful for that one person who can give me that affirmation. Did you see the movie Avatar? Instead of saying I love you, they say, ” I see you.” That is so powerful. I see you. I see where you are. I see the challenges you face. . I don’t need to advise you, cheer you up, minimize your situation, overload you with scary information…I just need to sit beside you in the dark, reminding you that you are not alone. I see you.

  7. Wow this is just spot on. I think the phrase that really spoke to me was this one: “But we all know that we can drown in mere inches of water when we can’t find the surface.” This entire post makes such an important point. Thanks SO much (as always) for sharing it so eloquently. Xo

  8. “Guilt is the successful internalization of the competition of suffering” I have to chew on this for a while…..hmmm.

    Oh, Jess. How I wish I could make this easier for you. The fact that you thank God daily for your particular provision is such a great example.

    Sending up prayers for you right now as you are probably commuting to work. Bless you, dear one.

  9. I love this: “Forgiveness, I explained, is not a gift to the one being forgiven nearly as much as it’s a gift to the one forgiving.” So true. And a hard nugget to digest, but once you do, it makes for a much lighter load.

    It’s never a competition, but it’s your race. Of course you want to run it the best you can. And it’s mind numbing when you can’t run it as planned. So it’s okay to ask for help when you fall. And cry when you are hurt. And feel sorry for yourself, because it’s okay to say “I’m human and I’m scared.” And then, as you so eloquently put it, you can forgive yourself for not being a super hero. And enjoy the gift you rightly deserve.

    Sending you much good karma. Remember, there’s a big, virtual box of tissues waiting for you when you need it. And crowd of pals to share your pain.

  10. This makes me think of one of my favorite quote from the book The Perks of Being a Wallflower by Stephen Chbosky.

    “I think that if I ever have kids, and they are upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody else has it much worse, that doesn’t really change the fact that you have what you have. Good and Bad. Just like what my sister said when I had been in the hospital for a while. She said that she was really worried about going to college, and considering what I had been going through, she felt really dumb about it. But I don’t know why she would feel dumb. I’d be worried too. And really, I don’t think that I have it any better or worse than she does. I don’t know. It’s just different. Maybe it’s good to put things in perspective, but sometimes, I think the only perspective is to really be there. Like Sam said. Because it is okay to feel things. And be who you are about them. ” (212)

      • You are welcome! It turns out I needed to read this quote myself today, and remember that it is “okay to feel things”, and “be who we are about them.” So thank-you! This is why it is so important to write about these things, and share them, and remember that we are not alone, but held up by communities of others around us.

      • Yes! “Not better or worse. Just different.” I’m glad that it is resonating with others, it is one of my favorites. That whole book is really good!

  11. You’re so right. And I don’t need to say it, but you have every right to be terrified for your girl. I feel the same, often, about Cymbie. Even though she barely has the language to tell me what she wants (with heavy prompting and a lot of patience), or answer a yes/no question, I feel guilt about it bc I have friends with non verbal kids. ” But she can TALK. I’ve never heard my son/daughter’s voice”.
    So, I get it. And I can’t imagine something as scary as seizures. No matter how severe, or not. My thoughts, prayers, love, and support continue to be with all of you. I’m glad you can say how you feel. There is no reason you shouldn’t. xoxo

  12. Big hugs and a quiet, strong hand to hold if you need one. It doesn’t matter how lightly one’s child may or may not be touched by ANY adversity. When it’s your child and there are scary ramifications? It’s ok to be scare. MORE than ok. Love you. xo

  13. Sorry so long…..
    I have been following you for a while now. I am Cynthia, My son is 14 he is autistic I am an OT and like you I cannot just sit with that, I fight. People tend to either think we are in such crisis (or they think they would be) with things we deal with or like you said they want to prove they are more scared and have more pain than we do. So your post hit home. It is not a competition I will use that! My son was born with autism he was born and was given the diagnosis of premature and failure to thrive, he is also adopted. His birth mom was 16 and had ok prenatal care it started late because she was in denial for a while about being pregnant. I looking at all the facts think that her stress hormone level with hiding this unwanted pregnancy did not help either of them and as a busy 16 year old she did not notice the signs of preeclampsia and she got really sick and so our son did also and with his autism he shut down and did not develop like he should have. He might have been at full term because for several reasons they were not sure of her due date but with how he presented they chose that diagnosis. He did not look like a regular newborn until he was 2 months old. We took him home with an almost non existent suck reflex and mommy bear OT took over. Therapy for his very existence started on the way home. Over the years his diagnosis have been added to subtracted from and changed. He had huge sensory issues and was so easily overwhelmed. I am a geriatric specialist and other than school did not do peds but I knew where to find the info and training I needed if it existed and it could help I at least tried it with at the assistance or guidance of specialists. Many people are against (cure) as they call it and I offended some with my quest. I follow my sons lead and when he is in crisis i work on helping him not be. A doctor told me early on ” the good news is your son is very smart and a bit of a control freak the bad news is that he really does not like being autistic and out of control and he makes himself crazy when he cannot control himself” Fast forward to now with all of the sensory therapy and every other therapy we have graduated to Aspergers. He handles things so much better but with crisis autism rears its head. A year ago he came to us telling us he was going blind some times. He uses odd phrases sometimes and I thought he just meant sleep in his eyes or some other simple thing so I blew it off for the moment. A few days later he jumped up from the show he was watching in the family room from he position of comfort which is a crouched position on the floor the arm or back of the couch and ran into my room to tell me something exciting about the latest yugioh episode and I watched it happen. As it began he said mom im blind. He did not fall down but for all intensive purposes he was not there his. Expression was so weird and vacant 5 agonizing seconds later he said that’s better and ran off. I was for a moment thankful he left the room because I could not hold off my expression of terror for long. while it was happening in my head I was screaming NOOOOOO while I counted. I did not go to him I just watched and counted the medical people who ever they were that dealt with sudden temporary blindness would need to know. When I came to my senses a few seconds later I went and asked him what happened and if that was what he was talking about and how often etc. I need all I could get to figure out who’s help I needed. After a whirlwind of specialists it was not seizures. It was not a brain tumor and after a surgery to fix his atrial septal defect we knew he had but were for that time watching it was not really his heart either. During all this he blacked out regularly at home and at the school was flipped out and wanted him at home but it was only ever 5 seconds at a time, he never fell down except for the one time he started running to get out of the classroom as it started and missed the open doorway. also we do not have the ability to take a month off work. I was glad it was winter I would not let him skate, skateboard, ride a bike, cross a street. At 13 when he was used to his freedom in our gated community he was less than pleased. Being trapped it its own crisis. No one has answers not the short EEG not the week long EEG not the tests or the scans. Not the EKG or the month long heart monitoring. It all happened to quick to track with machines. We spent several months vigilant and terrified. At 13 he is harder to protect and then their is he coolness factor he strives for and he hates scenes so when the teacher started screaming during a episode he was so mad. I tracked every episode and found similarities . It never happened outside. It usually at school happened at the end of the period or if he needed to sharpen his pencil. It never happened during a show or a game but right after. It ends up that he has postural hypotension and he is almost always somewhat dehydrated because he is way too busy to properly hydrate and we eat a fairly low salt diet. His 5′ 5″ 95 lb body that he keeps folded up even in his desk does not enjoy being rapidly unfolded while he jumps and runs to the next task. This causes his blood pressure to drop and his heart to race to get it back up and if is not back up quickly enough he blacked out until it was up. The only fix they could offer is to feed him chips and pop to get his sodium and his hydration up and to tell him to work on getting up slower and not running until he knows if he blacks out or not. Awesome and I need to trust him to do this. Yikes !!! All during this people took it upon them selves to either act like he was dying, tell me horror stories of people they know “just like him and all the bad things , or to act like i have a strong healthy kid and other people have true pain and I needed to get over it. I never asked for any thing from these people not even their opinion. Eventually life got back to our version of normal our new normal. Now a year later he still has blackouts but less frequently and he is good at dealing with them. He still sits folded up in his position of comfort and he is still less than perfectly hydrated he gained 10 lbs some from growing and some I am sure from chips and pop to keep the hydration up and life still goes on .

  14. So many parts of this spoke to me Jess. It’s okay to be scared. It’s okay to be who you are and feel what you feel. Thank you for writing and for owning your story.

  15. We are all scared, and we should be able to share our fear, our worry, and our concern without someone trying to “win.” There will always be people who are like that-who must one-up, must compete, because it’s the only way they know how to live–if they were in a situation where their situation was better, they’d compete, too–because for them it’s about making themselves feel better.

    I can’t promise that you’ll get less scared with time,but I can tell you that you will grow accustomed to the fear, that it will be there in the corner of your mind, just waiting, but it will become part of the background noise we carry with us.

    All three of mine are autistic, but my oldest also had a stroke at 9, and in the process of figuring out why, we learned he and his father both have a blood-clotting disorder, one that could result in more strokes, in heart attacks, in pulmonary embolisms without warning. My son is now 23, and while the first several years after it was all but impossible to let him out of my sight, the fear was backed into that corner of my mind, always present, but no longer in charge.

    Hugs to you and your family as you navigate this new territory. You are not alone.

  16. I have a lot of guilt over our situation. As bad as it gets (and it has gotten bad), I feel like I can’t say anything/compare, bc there are those whose children are FAR more impacted, and I should just be grateful that my child isn’t severe. This turns into me being overly positive about things. Trying to find, regardless of how difficult, the silver lining in every situation, bc how can I possibly complain? I haven’t even joined any of our local/state autism centers/organizations bc I feel that we don’t deserve a place. How could I possibly take anything from a child who is so profoundly affected? How could I possibly show up at any event? People would hate me. That is how I feel…so I keep our struggles to a small group of those who get it, and I excude positivity, covering up the black hole I feel is waiting at my feet, threatening to drag me down. Because, we don’t have it as bad, by whatever measurement I think is used.

    It’s hard to feel OK about sharing our struggles, when there ARE people who will come at you over how “lucky” you are. So, I don’t admit it. Not to everyone. And, you are 100% correct, it shouldn’t be that way, and we shouldn’t always have to shoot sunshine and rainbows bc our kids can speak and intereact and are higher functioning. Our struggles shouldn’t be brushed aside, no, but it’s still difficult to be open when there will always be a game of who has it worse, and there are people who will deny we even belong in this club.

    It’s just about being comfortable to tell your story and know it’s your truth, and that you have the right to feel as you do. It is a comfort I am still waiting to acheive, so I am glad you wrote this because maybe we can all take a bit of that strength, and not be afraid to ask for support, even when others might think we don’t deserve it. Or not be afraid to let down that guise of positivity once in a while, because sometimes thing just really suck.

    Thank you.

  17. I so agree that it isn’t a competition, but there are prizes for that realization. People keep telling me that they just didn’t know all that we’d been through until they read my book. My response is that none of us really know, and that if all of us read each other’s lives/books, we’d all realize we’re all fighting the fight of heros.

  18. Hi Jess. I don’t know if you’ll even see this comment with all the others on here, but I really feel like I need to reach out to you. We have been dealing with epilepsy for about a year now. I sit the same vigil you do. And no matter the end result (grand mal seizure, absence seizure, whatever…) it IS terrifying. The worst feeling in the world is watching someone you love suffer and knowing that there is absolutely NOTHING you can do about it. You are there right now. It does not matter how you got there.

    But this feeling of survivor’s guilt… I’m beginning to find that it is part and parcel of the epilepsy diagnosis. There is an autism community. We reach out to each other in our darkest moments — but for some reason, the epilepsy community is not the same. I have sought out local parents and tried to learn from them — but many share only the barest details… a doctor referral here, a sad smile there. When they do share, it has been with an air of one-ups-manship… “your daughter had two grand mal seizures last night? Oh… they only lasted 3 minutes each? My daughter has seizures that last 45 minutes!”

    I wish there was some way to show people that epilepsy (like autism) is a spectrum… but no matter where you happen to fall on that spectrum, it is a serious, life-changing diagnosis. I don’t know where to begin except to try to live that belief when I reach out to others.

    I am sorry that your beautiful girl is on this path with us. No one deserves this. And you have my support (for what it’s worth). You’ll have my email address from the comment if you want to chat sometime. Hang in there.

  19. My heart is going out to you…..parenting is not an easy business. The worst is when your kids are hurting and all you can do is watch. Sending you love and prayers. xo

  20. You are so right. So so right. I struggle with this from time to time and say those silly things in my head sometimes. When I say them out loud my husband wisely reminds me that all is relative. Everyone has SOMETHING, and everyone’s something is hard and scary. My daughter has Rett syndrome-which can be quite different from girl to girl. Once when two other Rett parents were meeting my daughter for the first time and marveling over how well she walked and pointed and vocalized-I felt guilt. The one mom looked and me noticing this and said to me “it’s still hard” and that made all the difference to me. Im going to share this post! It is wonderful!

  21. This is wonderful, I have an autistic child and most days are really good but in those bad days I struggle to reach out to my closest friend because her son has a much harder time than my own with his health so I keep quiet. She has never known the true extent of my heartache because I feel guilty, I need to work on that everyday to remind myself that my hurt is still the same, it is good to know someone else understands.

  22. Your intellect and heart lead us to better and higher places every time you share your thoughts. I marvel at your ability to find the gem and the heart of each concept. I’m sorry for the pain but I do believe it nurtures the insight that we all gain from your clarity of thought.
    You are the hero to many and especially to your father…
    Love you,
    Dad

  23. I hope you are able to find peace with this soon. I have complex partial seizures. I began having them by age 15. I had anywhere from 0 to 10 seizures a day. I want not diagnosed until I was 20. It took me almost 10 years to accept the fact that I had epilepsy and that I couldn’t make it go away. I hated that part of myself. I hated the medication. I hated that I went at least 5 years untreated and suffering. It took me too long to find peace. But I am thankful that I finally did.

  24. This is so well said.

    I’d like to second Karla- if you want someone to talk to, feel free to contact me. My daughter has been having what are likely seizures for years, and we just finally got an abnormal EEG recently. We go to the same hospital that you do. There are a lot of unknowns in our situation, and it is still scary even though it could be so much worse.

  25. Thank you for all you do for this community!! The VERY least we can do is be here for you when you need support and feel scared about all the overwhelming things going on. Thank you for being there for me more than you know.. for understanding.. for expressing what I can’t.. Your support has meant a great deal! Big hugs and, as I pray for every day, may God give you strength and guidance to help you through this time.

  26. Thank you. Sometimes I feel so lost. This helped a lot. I’ve been thinking of you and Brooke through this whole ordeal. So many of us are all praying for you through this time and virtually hugging you… and nowhere, feeling any of what you write about today…. (though, as the mother of a son with Asperger’s, I know how real it is and how it hurts and how it exists — and again, I thank you for calling it out and not being afraid to say ALL OF IT, even the stuff most of us hide from). xo

  27. You are so right that this is not a competition. It’s educating people, inspiring people, and telling others what support you need, and telling us what’s going on with you because we care. You have helped me to be so grateful for what I have. You have helped me understand what my friend goes through as she raises her autistic daughter. You have taught me so much, and I am inspired every day by your bravery, candor, honesty, unconditional love, and willingness to be vulnerable. There is little I can do to help you, except maybe tell you how you helped me and hope that makes you feel a little better. Tell you I’m pulling for you from here, tell you I’m a better parent because of what you write, and tell you I’m so sorry for what you’re going through. It just sucks.

  28. I am hoping that I have time later to respond to your comments individually. In the meantime, or in case I can’t, PLEASE KNOW THIS – I read and see and FEEL every single one of them. And the only thing that I am drowning in today is the overwhelming gratitude that comes from being shown this much love by this many wonderful people.

    THANK YOU. From the bottom of my heat, THANK YOU.

  29. Jess, this is one of your finest posts. So sorry that it is necessary for you to write it – but no one could have said it better. Thank you.

  30. Every single time I read your posts I hole myself in a quiet corner somewhere so that I might savor them and let them sink in. And then I get up and read them out loud to my husband with the proclamation that this is the voice inside my head being pulled out ever so carefully and laid out in front of me for thousands to see. Except the voice is yours. Our thoughts and experiences and reactions to experiences are so parallel I find it remarkable. A soul sister who I have never met, but with whom I share a life line. Your ability to articulate your emotional response to LIFE is a GIFT. Jess, your post today will stay with me forever. It rendered me speechless. It was the epitome of the battle inside of my head and my heart that I can never find an off ramp for…because it goes around and around without purpose or promise. Thank you for sharing that beautiful mind of yours. Somehow, it always brings me closer to myself.

  31. Everyone has the right to their emotions. Our emotions belong to us and how we feel is how we feel. When someone says they are scared or hurt that is their truth. No one can tell you how you feel.

    And its okay that there are people dealing with worse and still feel your real emotions. Those with worse can only point out that there is worse but do not have the power to deny your feelings as unreal.

    “Do what you can, with what you have, where you are”. Theodore Roosevelt

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  33. I’m reminded of the quote, often mis-attributed, that reads “Be Kind; Everyone You Meet is Fighting a Hard Battle” – Ian MacLaren …. I followed the link from a recent post on Facebook after you had a rough night with self-injurious behaviors.

    I have to think that most people are erroneously attempting to offer comfort with the idea that you aren’t alone, that they have muddled through these waters too. But that doesn’t take away that flash of hurt that comes when it seems like you aren’t entitled to feel sad, to be a bit overwhelmed, to be facing and dealing with your own hard battle.

    {hugs} I don’t have wise words that will make you feel better, that will allow folks to see that how they try to offer comfort is just as important as the empathy they feel … but know this … your hard battle is every bit as important as mine, or as anyone else’s. Don’t let anyone make you feel different.

  34. The timing of me coming across this post is perfect. Yesterday I had to tell someone to PLEASE stop telling me that I’m “lucky” because I have glaucoma at such a young age (42), because he thinks that means they’re more likely to find out the cause and maybe a treatment and/or cure while I’m still alive, and since he’s a couple of generations older than me, it likely won’t be during his. I tried to explain that we both have been diagnosed with the leading cause of irreversible blindness, we don’t know what causes glaucoma so there cannot and will not be any cure any time soon for either of us, and neither of us has a future that is guaranteed anyway. I feel justified in grieving because I will certainly go blind before I’m 82, if I live another 40 years, because that’s what glaucoma DOES even if you use the eyedrops to try to slow it down. He feels I am not justified because he has one eye that almost can’t see, and mine are not that bad yet. So he can be upset and tell me I am LUCKY to have this. AT 42. With a 12 year old who I want to see grow up, marry, and have children of her own who I would like to be able to SEE someday… and having never traveled yet, never seen the things that I’ve always dreamed of. Knowing I will likely go blind. Knowing I was diagnosed at a far younger age than him.I am lucky. My pain and fear and downright ANGER at having this happen to me has been invalidated time and time again by this person who finds me lucky…. if I wasn’t still so raw over this most recent conversation about my good fortune I might formulate a post that explains a bit more about glaucoma, which nobody even knows anything about because old people just.. get it and their sight just DOES go bad, everyone expects it and nobody thinks about it. Until it happens to them and then the doctors say “it causes irreversible blindness and we dont’ knwo what causes it so we can’t really do much about it except treat ONE of the main RISK FACTORS with eye drops that only work for a little while for each person”. Ask anyone their top three medical fears it’s gonna be cancer, heart attack, going blind. Well we know that the American Cancer Society and American Heart Association are constantly doing work to get donations to solve the problems to raise awareness to help patients etc… what do we do for Glaucoma/blindness? Nothing.. we dont ‘even know what it is or what causes it and most people would never in a million years care that I have it. And those who do, just think I am lucky. I may have to share this post with him. Sorry to rant/ramble on your blog about this… and thank you for writing it.

    • Send it to him. It sounds like some perspective is needed. Much love to you as you find your way through the very understandable anger.

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