To date, this was one of the toughest years of our married life together. Although I can think back to three separate years that almost tie for this one in a different way...Three crucially diverse struggles which differed from this year. Each in a different category. One I can not speak about, one was financial and was harder on both of us together (instead of driving us apart like the others did) due to poverty, and one was because of my Autism diagnosis. Those were tough years. We even briefly separated for awhile, not out of home, but in home, because of deep issues during one of those harder times long ago. This year was completely different, yet probably had more trauma packed into one year than we have ever experienced before. But I think it was good, to have previous experience with picking up the pieces of a married life in the past to build upon, with a year as devastating as this was.
Here we are, passed our 15 anniversary, and still best friends for the most part, even if it has taken me months to be able to say that statement truthfully. We are still healing. Still becoming. Still learning how to be together healthily once again with our new growth selves. I will admit that it took me three days alone with my husband to adjust to knowing what to do with him when alone. It has never been like that before. I could always just talk to him, or hang out and do my own thing, or find some fun for the two of us, when we were alone...but this year the children were a buffer for me. It was odd not having them around and I felt desperately in need of them. But after three days, we began to find our old groove again. A week later, and I am feeling the start of something new but I AM still adjusting. It's a new phase in our relationship. We are learning how to BE, separately and together, once again. Happily Ever After has happened and will again, but there are moments when the story gets a re set. This is one of those times.
For those new to our journey, we married young. See THIS and THIS post for more context and for posts written during the good times. THIS is why we changed our last name together, and to me, shows more of a window into our married life than most posts do, in how different we are together.
I was sick once again for our Anniversary... the week we were supposed to have off together tragically turned into a week that I mostly spent fluctuating between crying, being sick or lying in bed exhausted...and my husband just read beside me or puttered around the house. Luckily, we are also used to me being sick. My husband knew what he was getting into when he dated me as I was in emergency a lot back then. We didn't know I had Celiac and my regular foods were slowly poisoning me, and we didn't know I had Lyme. Both are newer (as in the last few years) adjustments for us, but the knowledge helps our story. I have been constantly Anemic since I was 12 ( it fluctuates from serious to not.) I was sick the week leading up to our wedding and sick the day of with the stomach flu. Or so we thought. But interestingly enough I have been sick EVERY year the same week and sometimes a full month of parts of late June and early July, with the same symptoms and reactions. We are starting to wonder if there is a common factor we need to discover in this. If there is a Lyme trigger as a toxin in sprays outdoors, or allergies or foods I wouldn't eat otherwise...My husband was not shocked when I was admitted to E.R. AGAIN, after months of avoiding the hospital for myself despite multiple doc's appointments, the night before our anniversary. I didn't get home until three in the morning. I was a zombie on Benadryl for the following day, and when my tongue actually stopped feeling like a pound of brick, I needed time to be able to eat without paranoia and rest. So I forgot again, even though our 15th was high on my radar this year and the children were spending the week at my mother's. I was confused when there were flowers on the table and I thought they were because I was in the hospital, which was touching...then I realized they were for another anniversary that I was unprepared for.
I always say that I am lucky a marriage isn't a wedding...or an anniversary. All 15 have been miserable for me. But the day to day stuff between my husband and I? Most of that is worth celebrating or at least acknowledging. Maybe my weird health conundrums also give gifts? Turns out we have an additional week alone together. My iron is the lowest it has ever been and my cell size is tiny. Luckily, a Hematologist flagged my results and I am getting tested in six weeks for some odd, rare condition. I also have a stellar therapist who is also an MD who has taken regular care of me, something that is crucial to my well being. But I have finally adjusted to a few days without my children and now am in the beginnings of being able to rest, catch up on other aspects of life, and rest some more. My mom agreed to take the kids for awhile longer, and while I miss them and go visit them almost every day, my brain and my body needs this. I only am separated from my kids once every year or two, so I guess it is ok.
My husband jokingly remarked that I am like a Wring Wraith from LOTR...when I should be fainting or hospitalized as many are with my iron, ferritin and blood cell size levels according to online forums, I trudge through with this otherworldly stamina. Like I am already dead. Yet, I am SO TIRED, but I can look like I am functioning at average. I am not believed until my blood work is facing a professional and then they still will often be shocked. But this is what I love about my husband. He actually admires me for what I think is the pits. He actually thinks my struggles make me strong. He is often my best cheerleader and health advocate. He feeds me and reminds me to eat or sleep or even grab a sweater because my limbs are freezing in plus 25 degree weather. I shiver and develop goose bumps but I never remember to actually DO something about it. He asks me every night if I have taken my Iron or Vitamin D. He tells me to jump in a hot shower if I can't get warm or feel punched all over. He is often my radar for comfort in the outer world. He has become a part of my executive functioning and adapted to replacing aspects of myself that I struggle in. He is another part of my adaptive living as well as a friend and lover. I think that says a lot about our years together.
And I know I am good for him too. I know he would not have gotten through this year without me. In fact, he may not have lived. That is not an overstatement. There is a line in the film "*Their Finest" that speaks about not allowing depression or unease take the joy out of life and not to give "death dominion over life." That is what I cling to every day. It is what I have fought for this year. It helps that for my husband and I, our strengths balance out our weaknesses and this has served us well. He is my humour once again, and has always been before this year, and I am his light. His perspectives are more laid back which aid me in taking life less seriously, and my perspectives are deep enough for him to prod into the inner workings of his psyche. We are a team that has never had any interest in being a tragedy or a love story for the ages like Romeo and Juliet or Cleopatra and Anthony ect. Instead we want to be one of those couples that are never really celebrated but have a love that is kept spicy, strong yet average, in it's natural every day love.
Life WILL have hardships and it is natural for us to drift apart, be un-attracted to each other at different times, or grow apart....but it IS possible to come back home to each other, suddenly fall back into attraction, and grow back together. In the past it has taken patience, time, dedication, loyalty, awareness, commitment and communication. In the future it will require the same skills and time.
In "Their Finest" this phrase particularly stood out to me, "It seems to me that life is so precarious and it would be a shame to waste it." Yes! A resounding and heartfelt yes! I turned to my husband and kissed him. Because I believe that. EVERY DAY. It is why I rarely stay mad at those I love for long. It's why I say "I love you" each time he leaves, I leave, I go to sleep or even after a fight. It is why I refuse to allow bitterness to rule. I give myself sufficient time to address proper emotions, but I don't wallow. It is why I do not allow myself to be burdened heavily by guilt for long. Instead I embrace life and savour the love I DO have.
Partially this is due to health. It has been engrained in me since childhood. I have always struggled with sensory issues and disease undiagnosed until recently. Long term suffering that came and went. Pain unexplained but still vividly real. One day I was fine, the next hour I was in ER, and perhaps the afternoon after, I was happily running errands again. That is life with disease, chronic illness and sensory overload. And it can go two ways. One can either allow it to defeat, or be more determined when the good moments come to LIVE. What do I do when I am in so much pain? I pretend I am my future self and this self speaks to me, "K this will pass. Either by death or by time...and one way or another you will be out of it. So think of that moment. I am the you from that moment.You WILL get through this. You will have another phase." And if I am lucky enough, as I have been time and time again, to have some healthy or happy or at least struggling yet manageable good moments, I wish to not waste that time.
Time has always been precious to me. Especially ordinary time. Because ordinary means that there is contentment, a sense of coziness or at least an absence of trauma. Or perhaps there is pain, depression and struggle...and that precarious nature drives home the moments in between. At least, in my experience I have found this. And I think that is the gift I give my husband. He witnesses what most do not in my life. He sees me get up again and again. I often will deliver that line in different forms as a reminder that some freak accident could take any one of us- so what are we going to do with NOW?He sees me say, "Yes it is hard. It is pain but that does not diminish that there is beauty somewhere. And I will find it and enjoy it again." That spectacular now is the reason I stick through the bad times with my husband. I know deep down, that we are FOR each other and we have something special. Why would I wish to go through all this again with someone else who may not even get to the phases we have? Why would I wish to find a different sort of suffering? I also realize that not everyone has what we have, and they need to leave the situation, but for us, it has not come to that yet. The hard times are there of course, but I would rather travel the tough roads with him or apart for awhile, to meet up again, and revive the soul love we have. So I wait, or I fight, or I even give in to defeat slightly for a time but I never fully give up. Normal human emotion deserves legitimacy, and some circumstances truly do deserve time, but I try to honour that whilst still minimizing what I can to savour what IS.
My husband has been my greatest beauty but also my greatest heartache. This year he provided more than enough heart pain to almost render me in to the depths of despair. Yet, he was still worth everything I could manage to show up with. He has picked me up in the past when I didn't think I could fight. This year he was broken. Not as an excuse to be less than he could be, but legitimately in need of help. Now he is getting back to himself, and now it is my turn to fall apart a bit...and I kind of have. Still, my soul is ever green. It may be wilted but the soil of my soul is ready to sow seeds of growth, even in the barren waste of depressed existence when I am unsure how to even show up as a person. Trudge on through. Become what IS. We still have had some beauty this year. Three gorgeous beauties are in our constant care to nurture and live life with. This I do not intend to waste.
He gives me euphoria and he leaves me sobbing in the closet. But mostly, in general day to day life, he gives me the gifts of normalcy and ordinary. Contented boredom thrown into daily chores, chosen schedules, minimal requirements, and plenty of time to love, savour and BE together. This is what I wish to focus on this anniversary. This is what I celebrate. This is what I hope to still have, if we are lucky enough to live another fifteen years together.
The Good Witch recently had a Wedding Episode and I loved the little dialogue at the Wedding Ceremony;
"They're about to say I Do. Three little letters. Two little words. It's the simplest part of the day. But there is nothing simple about the things that remain unsaid. I do means...I do know I could be hurt but I am ready to be healed with you. It means I do want to try even when the fear of failure holds me back. And I do not know the future, but I am ready to be surprised along the way. And I do means, I do want your love, and I do give you mine. And nothing we will do will ever be the same because you and I will be doing it all together."
What a lovely tribute it is to be ready to be healed together...Happy Belated Anniversary love. You are part of me. An aspect of my soul that inspires and infuriates but mostly PROVIDES...love, pain, practical needs, joy, comfort...thank you for that provision of self and giving of all that you are. For showing up when you barely thought you could. I love you. Let em say we are "crazy because I don't care about that. Put your hand in my hand baby and don't ever look back. Let the world around us, fall apart. Maybe we can make it if we are heart to heart."
Golden Leaves by Passenger sums up this year best: "Do you remember how this first begun?
Teeth were white and our skin was young, Eyes as bright as the Spanish Sun. We had nothing we could hide.Now my dear we are two golden leaves,Clinging desperately to winter trees, Got up here like a pair of thieves, While the sirens blare outside. What's left to say when every word's been spoken?. What's left to see when our eyes won't open?. What's left to do when we've lost all hope and What's left to break when our hearts are broken? But sometimes...Do you remember how this started out? So full of hope and now we're filled with doubt. A dirty joke we used to laugh about, But it's not funny anymore. I fear I choke unless I spit it out. Still smell of smoke, although the fire's gone out. Can't live with you, but I die without. So what's left to say when every word's been spoken? What's left to see when our eyes won't open?What's left to do when we've lost all hope and What's left to break when our hearts are broken?...But sometimes
No, it's run-of-the-mill, still I can't live with-out it"
*I was surprised at 'Their Finest' rating that was 14A. It is enjoyable but there are two brief war scenes as well as a top frontal of a woman (which one sees approaching but seems a bit out of the proper feeling of the story) which was generally refreshing and lovely otherwise but also slightly traumatic... watch at own risk,
Lyrics to Nothing's Gonna Stop Us Now- Starship. One of my favourite songs for us.; "Looking in your eyes I see a paradise. This world that I've found is too good to be true. Standing here beside you, want so much to give you.This love in my heart that I'm feeling for you Let'em say we're crazy, I don't care about that. Put your hand in my hand baby don't ever look back. Let the world around us just fall apart. Baby we can make it if we're heart to heart And we can build this thing together, Stand this stormy weather, Nothings gonna stop us now, And if this world runs out of lovers, We'll still have each other, Nothing's gonna stop us, Nothing's gonna stop us now I'm so glad I found you, I'm not gonna lose you, Whatever it takes I will stay here with you, Take it to the good times, see it through the bad times. Whatever it takes here's what I'm gonna do Let 'em say we're crazy, what do they know
Put your arms around me baby don't ever let go. Let the world around us just fall apart. Baby we can make it if we're heart to heart And we can build this thing together. Stand this stormy weather. Nothing's gonna stop us now. And if this world runs out of lovers. We'll still have each other
Nothing's gonna stop us, Nothing's gonna stop us now Oh, all that I need is you. All that I ever need
And all that I want to do. Is hold you forever, and ever and ever And we can build this thing together
Stand this stormy weather..."
8 comments:
Vulnerable and valuable, as usual- M
This is one of your deepest and most inspiring post, I feel. You have described your journey with your beloved husband, the shared joys and the sufferings in a way that allowed me to feel so much, so deeply. And I feel liberated with your words of expression.
Ours has been the same journey, and I know exactly how it feels and I am not exaggerating when I am saying this- The Same Journey.
I would love to highlight these sentences (that you wrote) below, because it is exactly how I have felt in my journey as well:-
{ "those couples that are never really celebrated but have a love that is kept spicy, strong yet average, in it's natural every day love."} - so true and honest !!
{"it IS possible to come back home to each other, suddenly fall back into attraction, and grow back together."}- again, true !
{"Partially this is due to health. It has been engrained in me since childhood. I have always struggled with sensory issues and disease undiagnosed until recently. Long term suffering that came and went. Pain unexplained but still vividly real. One day I was fine, the next hour ...."}- can relate to it always !
{"That is life with disease, chronic illness and sensory overload. And it can go two ways. One can either allow it to defeat, or be more determined when the good moments come to LIVE. What do I do when I am in so much pain? I pretend I am my future self and this self speaks to me, "K this will pass. Either by death or by time...}- my feelings too, so often !
I would also like to thank you for writing this post. Through this post, you have inspired me in many ways to go on and on...
When you write, please remember that although you are writing your own personal experiences, you are helping many others (aspergers/non-aspergers) to own and accept themselves and their pain/journey. It (writing your own experiences ) is like an outlet not only for you, but for me and others as well because in this journey , being alone in our thoughts and experiences is more painful and dehumanizing. Sharing and expressing is a kind of healing,and gives dignity to our painful feelings, I firmly believe. Also, in the future, this blog will act as a treasure house of reassurance/comfort for those who are yet to be born /diagnosed in this world. Who are confused and in pain but have not yet heard from someone similar. I am so happy to have you in my life !
Wishing you and your husband a Happy Anniversary once again !.
Happy anniversary! Hope you two get at least fifteen more! :D
You've probably already thought of this from every possible angle, but could you by any chance have some kind of seasonal allergies or sensitivities? I'm always sicker in the summer because my sensory issues and chemical sensitivities do not mix well with the noise of the air conditioner or the freon, and sometimes I'll get hot slowly without realizing it so it strikes like a sudden stomach bug.
My saying is "This too shall pass. It may pass like a kidney stone, but it will pass." Which then prompts the voice in the back of my head to say "Stop saying that or you'll jinx yourself and get actual kidney stones!" XD
I always marvel at the energy you manage to scrounge up for housework, kids, school work, and other things while dealing with anemia and the other stuff. My bloodwork is fine but there have been many days where I am so exhausted that I have to lay down force myself to keep breathing because even something that basic and simple takes up so much energy. Which only lasts 2-5 minutes because somebody always needs something and up I have to get again.
Ashe: I hope we do too! Thanks. I can’t figure out what the seasonal trigger is blast it all! I don’t know why…yes I have those sensory things too for sure. The same ones as you and this seems to be something ON TOP of that I can not figure out.
Lol your saying is similar to mine and I have actually said that too! Lol and my family teases me about being superstitious. LOL Because I think the exact same thing about jinxing it or putting it out into the universe and attracting that type of energy. LOL. too funny.
ITs good to hear that. I find even without anemia that parenting, mothering, choring, wifing, being a friend…it all takes so much energy and I have always needed those quick lie downs too…I think most sensory overloaded and introverts plus autistics usually do. So even before I did. But NOW I need so much more time and often feel like a zombie… all day and like my soul is dead if I have to deal with anything extra or an other emotions….Yes the needs are high. I admire all normal women. LOL. You are doing great.
M thanks!
SL Your comments always warm my heart. Im glad you found it liberating and honest:) and inspiring:)
I am also honoured that you think I am helping many others own and accept their journey. That is a HUGE goal of mine and even hearing it is happening once is a HUGE boon to my existence. It is a huge outlet for myself first but I am glad that in turn it is an outlet for others. I like how you pointed out that "being alone in our thoughts and experiences is more painful and dehumanizing. Sharing and expressing is a kind of healing,and gives dignity to our painful feelings, I firmly believe. Also, in the future, this blog will act as a treasure house of reassurance/comfort for those who are yet to be born /diagnosed in this world. Who are confused and in pain but have not yet heard from someone similar. I am so happy to have you in my life !" FIrst off, what a wonderful sentence about expression and dignity in sharing...but also what a high compliment as I hope that it CAN help the few who made need a hand in their diagnosis journey but that is a huge weight and I wish to do that justice...but I am also ok if no one reads it but you or me or whomever and they get what they came here for or walk away feeling better about their world or someone elses...
I am very happy to have you in my life!!! ANd thank you for the anniversary wishes. Very sweet. May you also enjoy many more with your husband...:) xo
so enjoyed reading this. Happy 15th Anniversary to you both!
So much love and admiration of you both...xo
Amy
Amy: Thank you!! I appreciate that:)
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