Maintaining

Marriage is wonderful. It’s also hard work. It’s not something to ever be taken for granted. When one or both partners is ill, it’s just that much harder. Here are a few things I’ve learned. I hope something here helps someone out there.

Be honest. Obvious, yes, but so difficult. It took a long time to admit I self harmed and had suicidal thoughts. I was terrified he’d be horrified and run. He didn’t.

Ask for help. Also difficult. There are so many things I find difficult. I tried for years to manage on my own. Didn’t want to be a burden. Sickness and health people.

Try to have fun together. Allow a shaft of light in once in a while. This is a hard one for me, but it’s vital in a relationship. ML spends a lot of time trying to make me laugh – or at least smile. Try.

Be patient when your partner comes up with things he thinks will help. When I’m down for the count the last thing I want to hear is that I should go for a walk, or eat something, or whatever other fixes people think will help. I’ve learned to take a deep breath and realise that whatever advice is given comes from love.

Keep touching. Hugs are amazing healers. Hold hands. Stay physically close. Barriers are often part of the illness, but make sure you lower them for your partner. You both need to feel physical closeness. It’s important.

Involve your partner in all decisions. Health related or otherwise. ML always knows when I’ve changed meds, or when I have a new symptom. I don’t expect him to notice on his own – he has enough to think about. It’s really crappy when you find out something new about your partner’s pain from a visit to a Doctor. ML hates feeling left out of the loop, or looking stupid when something comes up he wasn’t aware of.

Ask your partner how he’s coping. Illness is isolating and selfish. ML has problems and issues of his own. He needs someone to talk to and often won’t open up to me because he thinks I can’t handle it. I’d rather know, and I’m ill, not unfeeling. I need to know what’s happening in his life. Sometimes I need to push to get him to open up. Push.

Try to make an effort personal hygeine wise. It’s a lot of work for me most days, and I often don’t have the energy or can’t be bothered to shower, do my hair, wear something pretty. I keep myself as clean as I can, but I do try to go the extra mile just for him. I always make sure to look presentable when he has to be in public with me. Dragging around a grey,  unhappy wife is horrible. And probably embarrassing.

I used to tell ML he was free to leave me and find someone he could have a normal life with. I know how much work I am, and we couldn’t have known that this is where we’d be when we married. This made him angry. Don’t underestimate your partner. It’s hurtful.

I don’t know if any of this is helpful, but these are all little things we’ve learned, and knowing this now has made our lives a little easier. Above all else – talk to each other. Neither of you can read minds. “Normal” marriage can be tough enough, but throw illness into the mix and it’s a daily uphill slog. Stay connected, hold each other tight, and ride it out together.

I married a very brave man. I’m grateful.

Do I?

When you look at me My Love, who do you see?

The woman you married, the one you adored, she’s still here. She’s hiding in the battered body of a sick woman. I want her back too.

The woman you fell in love with was fun, sexy, flirty and affectionate. You made me feel free to be ….myself? Happy. For the first time in my life I had very little fear. You loved me. That’s all that mattered.

Pack up my life and leave everything I know, move halfway across the world to Australia to be with you? I’m there! Get married in two months? Absolutely! Let me go buy a dress.

We did bold things. We moved. We changed jobs. We followed dreams. We travelled. And we laughed. A lot.

I felt safe with you. Head out to a social occassion with the arty elite? Sure – sounds like fun. Short dress – don’t care. Let ’em stare. I know who I’m going home with and he’s standing right there – looking hot and burning holes into my back with his eyes. I can feel it. I felt attractive and secure. That was you. You did that for me.

I don’t know when I started to fall. It was so gradual. There was always a tiny ball of illness living deep inside – flaring up now and again. But, I felt strong and I had you and I always managed to work through it. Or did I?

You don’t look at me that way anymore. Pity. I hate being pitied. Pity for the pain and the exhaustion. I look at you the same way now. This is what our marriage has become. Feeling sorry for each other and feeling a whole shitload of self pity.

We hold hands. We peck each other on the cheek, or the forehead. We still tell each other “I love you” at every opportunity, and I know that it’s true, but is it the same love we declared the day we made our vows? For better or worse. In sickness and in health. If we had known then what we do now, would we have done things differently?

I’m a crap wife. I am nothing but a burden these days. We use phrases like primary carer, and full disability and pension day. WTF? This was not how our life was supposed to be. This is not our happy ending. We deserve better. We already paid into the Karma bank. We both got burnt and had our hearts broken so many times. We waited so long for each other. Why are we still paying for our happiness?

I know you’re stuck with me. There is no one else around to take care of me. I’m too far away from “home”. This is home now and you’re it. Last man standing. I’m so sorry.

I love you. I need you. I hate being needy. I function much better when needed.

I love you. This is the ONLY reason I’m continuing to search for relief. Another doctor, more tests, more surgery? For you my love – I do. In sickness and in health.

I’m grateful.

 

Acceptance

After many years of being anyone but myself, I’ve finally sort of figured out the real me. Ironic.

I live in isolation. I live this way for a variety of reasons. I’m ill. I’m in pain all the time. I’m exhausted. I have trouble with my bowels and my bladder. I’m severely depressed and suffer from crippling anxiety. I have psycho social disorder. When I try to speak to people my throat physically closes up and I can’t speak. I’m a mess.

But I have come to accept that this is who I am. I do still have body shame issues (thank you menopause), and I find what once was my normal personal maintenance routine tiring and an incredible waste of time.

I do try to keep myself “tidy”, but it’s hard. I certainly no longer feel the need to leave the house (when I’m forced to), with my hair “done”, and a full face of makeup. As long as I’m clean and tidy, and smell incredible, I’m good. My collection of fragrances have become my armour. They never fail me. My hair has gone grey, I have a few wrinkles, and my body is no longer what it once was, but that’s OK. It’s who I am.

It’s taken me a long time to get here. The outside has lost it’s sheen, but I’m not 25 anymore so I can live with that. I have too much going on inside to worry about lipstick and mascara. It was never who I really was anyway. She was someone I created – someone I hid behind.

So now that I have accepted who I really am, why am I still hiding? What’s keeping me from showing my true self to the world?

Because she’s too hard to explain. People, kindly, always ask “how are you?”. I don’t know what to say. The truth would take half an hour of gritty, ugly details. I’m ill thanks. I’m that ill, that when I need to see a new doctor, I bring along pages of medical history, surgery, and notes from past specialists so I don’t have to go through the whole mess everytime. It’s all so boring to me, and I’m rarely listened to properly, so here’s some paper – have at it.

And answering “fine thank you” is just stupid. Anyone who knows me, knows I’m ill. Do they need to know about my new infections? Or that I haven’t eaten solid food for a month. It makes people twitchy and uncomfortable. It makes me twitchy and uncomfortable.

So, I stay inside. I reach out in ways that are comfortable to me when I can. I dress and go out when I have to. Twice this week. Eeeek! My heart’s already ramped up, and I’ve fallen over three times this week – lightheaded and anxious. I have a couple of pretty bruises for my efforts.

Outside is scary. New Doctors are scary. If it were left to me, I wouldn’t bother. I’m doing this for ML. He loves me and he’s worried.

So, tomorrow, I will get up, shower, dress, take ML’s hand, and head out the door. It’s a new gastroenterologist tomorrow. I always have a tiny nugget of hope curled up in my other hand. Fix me. Please. Listen to me. Help me. Take away some of my pain. Take away a tiny bit of ML’s worry. I don’t know if it’s too much to ask anymore.

But with ML at my side, holding my hand, anything’s possible.

I’m grateful.

It’s A Small World…

I live a very small life.

My life is about pain, illness, medication, exhaustion, loneliness, and guilt.

ML married a woman who was a bit larger than life. I had spent years teaching myself to be outgoing, funny, stylish and unafraid. It wasn’t who I was. But, damn I was good at it.

When you’re young, you can learn just about anything. I learned how to ski when I was six and because I was completely fearless, and because I wanted to fly, I became very good at it very quickly. It never occurred to me that I might fall and break my neck. All that mattered is that I was fast, I was outside in the snow, and people thought I was pretty awesome.

That was my first taste of faking it until I was making it. I had the right clothes, the right gear, a great attitude, and wonderful teachers. They were friends of my parents who had skied all over the world. They were incredibly talented, and knew how to ski safely and they knew how to teach. They taught their own children, and I simply tagged along. They were always at the ski hill as they volunteered as ski patrols, so I was in good hands.

With that under my belt, I had it figured out. Look the part, act the part, and find someone who knows what they’re doing and become their shadow. I read everything I could get my hands on – hours spent in the library – no internet back then – but whatever I needed to know, I learned.

I faltered. I fell. A lot. Depression was always a step or two behind me. Self doubt was like a lead weight I carried in my core, and criticism killed me.  But I was on my own, and I knew that if I was going to survive, I had to keep the mask on. No one knew who I really was. I didn’t know who I really was anymore.

I know now that I was a small child who carried traumas that were never discussed or resolved. Chin up, shut up. The show must grow down.

I was bound to fall eventually. There were many small things that led up to the big crash – so many clues. Every closed door meeting I wasn’t invited to was about me. I was a fake – it was only a matter of time before I was found out. Tiny cracks started to show. I could no longer carry my pain. My grief and guilt became unbearable.

So slowly, I started letting things go. I gave in to my illness at last. I put mysef in the hands of doctors who didn’t always have my best interests at heart. Mistakes were made. I grew sicker. Depression caught up and captured me and dragged me down. And slowly I backed myself into a tiny corner of room where I didn’t need to pretend anymore.

I lived a big life. It wore me down. I made bad decisions. I hurt people who loved me. I isolated myself to protect my heart. The only one who I allowed to stay and hold my hand was ML. I believed he loved my unconditionally then, and I believe it now. I wish I could have give him a bit more of the “old me”. She was fun, funny, and would try just about anything once. Fearless. What did I have to lose? My only fear was dying, and truthfully, I didn’t fear it. I still don’t. It seems rather peaceful. And I’m so tired. And hungry.

But I’m not going anywhere. I’m hoping I’ll gain enough strength to come out of my corner every now and again and be a great wife and friend. I have ML and great friends cheering me on.

I’m grateful.

Close To Home

I’ve been doing a lot of thinking about antisemitism – for obvious reasons.

My parents both lived through WWII in the Netherlands while in their teens. My Father suffered far more than my Mother. His family were incredibly poor and and barely survived, while my Mother’s family had money, and a Father who was not above doing whatever it took to provide for his family.

From stories, I don’t think my Father was exposed to antisemitisn. The area he lived in in the Netherlands – Friesland – did not have a large Jewish population. It was also very cold, wet and harsh and not a place to flee to – either to hide or use the coast to escape.

But it haunted my Mother. They lived very close to the German border. She told many stories of german soldiers storming their home, taking food and supplies, searching for contraband, and Jews.

Her Father hid Jews in the cellar. For years I thought of him as a hero for risking their lives to help others. It wasn’t until very recently that I discovered he charged and was paid handsomely for his “heroics”. I struggle with this. He was also very well connected and could obtain just about anything from the black market. They were never short of flour or sugar or tea. If he wasn’t a crook, he was definitely an amoral ass.

When my parents arrived in Canada, they stayed within their own community of immigrants – they stayed with their own kind. I wasn’t exposed to many people who weren’t dutch, and I certainly don’t recall having any German friends or neighbours.

Until my sister married one. She didn’t set out to – it was a bit of an accident. But she was married to him and we suddenly had to socialize very closely with Germans.

And they were very German. The parents would have been close in age to my parents so would have been teenagers through the war as well. But they were very German.

I remember clearly visiting their home for the first time. Mr B greeted us at the front entry, standing at attention, gave a small bow, and clicked his heels together with his hands behind his back. I heard my Mother gasp. There was a long period of silence, and finally, greetings were made, we made ourselves comfortable, and tried to make the best of an uncomfortable afternoon.

Happily, things improved over time, but it was difficult. I have a niece and nephews who are half German. It must have been odd for my parents, and something they had to work at accepting. When you fear and hate a group of people for a long period of time, it is hard to forgive and put it behind you. I hadn’t gone through any of what they had, but the feeling of fear and distrust was there. It was simply something I grew up with, and I must have developed those feelings through comments or conversations at home.

It is still a sensitive subject, and it was something my parents spoke about more as they grew older. They blocked out a great deal of the horrors of the war, but I know now that they saw and experienced a great deal more than they ever discussed.

But we came to love this German family. We were connected and we always will be. They have been very good to me and very supportive over the years. My sister’s first husband was an incredible Dad and raised three wonderful children. When I see him, I hug him and I have told him I love him. And I do. He’s no longer simply German, he is a nice man who has had a positive impact on my life. He has cared for me as he would a younger sister, and I know I could ask him for anything.

I’m grateful.