Tuesday, May 8, 2018

Loving the Body: Mortality and Frailty in Love

Beau and I have had a very tough few months. Beau had major surgery with a long, extremely painful, and very triggering recovery. His emotional and physical pain was almost unbearable for me to witness, let alone for him to endure.

And my beloved, 21 year old kitty, Bobby, finally let go of his miraculous, tenacious hold on life - and let us know he was ready to die. We had to make the agonizing decision to end his suffering. 

In the midst of all this pain and loss, someone I once knew chose to end her life. Hers is not my story to tell, so all I will say is that it hit me very hard.

Then an enraged man plowed a van into a crowded sidewalk in Toronto, killing 8 women and two men. His reason? He couldn't get a woman to have sex with him. In his mind, this meant that all women had to pay - with our lives. Within hours, the internet was abuzz with self-defined "incels," involuntary celibates, praising him as a hero and advocating rape and further violence against women, all women, for the crime of not making our bodies available to them. Within a day, "reasonable" men online were saying that the solution to male violence is greater access to prostitutes.

Triggering? Oh my God, yes. So much.

It's been a very rough few months. I've thought, and felt, a lot about mortality, the frailty of the body, and the destructive force of pain. And I've learned a lot about love, and the incredibly important, healing power of the body in love: touch bypasses the brain, bypasses words, bypasses reason - and heals the soul.

(I'll get to the outfit part of this post near the end, have no fear. I haven't forgotten that this is a style blog.)

Beau with one of the amazing charts he's made as part of his business.
Beau wasn't sick. That's not why he needed surgery. He was in the pink of health. His business was (and is) doing extremely well. All was well.

But he wanted it to stay that way. If he didn't get this surgery, he had a dangerously high risk the return of his ulcerative colitis. He had an even more frightening, high risk of developing colon cancer. These were not risks he was willing to take. 

Thirteen years ago, Beau's ulcerative colitis was so bad, it nearly killed him. He had to have almost his entire lower intestine removed and get an ostomy. If he hadn't, he would have died within months. His younger son was a week old.

Now, to avoid future, life threatening dangers, Beau had to have the last bit of his colon removed and get, what he calls a "barbie bum."

His physical health was good, but his mental health was precarious. In short, he was terrified. 

Beau's story is not mine to tell in detail but he's given me permission to tell you that he too was sexually abused as a child. As a boy, he was abused in a certain part of his body, the very part that the surgeon was going to remove. 

It's a vast understatement to say that Beau was badly triggered as the surgery drew near. He was having flashbacks and panic attacks nearly every day. 

I did my best to comfort and care for him but I felt like I was failing him. I was exhausted, and that made me fear that I'd let him down after his surgery. Would I be able to take care of him in his pain and flashbacks? Would my own PTSD flare too badly for me to be there for him?

And then there were the practical considerations. Beau does the lion's share of the physical work of keeping our home together. He cooks, cleans, shops, does laundry... and he helps me with everything: getting dressed, fetching things for me, bringing me my food, getting my ice packs at night, etc, etc, etc. 

I hate that I can't do all those things, but we have settled into a rhythm that works for us. Who would do all these things for me while he was in the hospital? Who would do them for both of us upon his return? We ended up engaging Nurse Next Door - at $500 a day. We couldn't afford it, but we had no choice. 

We also knew that I wouldn't be able to take my mobility scooter downtown to visit Beau in the hospital. We do have an accessible rapid transit system, but it is so bumpy, so circuitous, and so painful, I never use it. I end up in tears by the time I reach my destination. 

Theoretically, we have accessible taxis in our city, but they never come for actually disabled people. They'll say they're coming, but they don't. They think we're too much hassle and they pick up abled people instead, leaving us waiting for hours. So I knew I'd have to take regular taxis and be pushed around in a foldable wheelchair. What I didn't know yet was how incredibly painful those wheelchairs are.

Meanwhile, Bobby was finally showing signs of being in serious decline. I'd been here with him before, more than once, and, more than once, he'd revived within a few days, like Lazarus from the dead. And then he'd gone on with the business of enjoying his life. We called him our Miracle Boy. Even the vet said that, with Bobby, he could never be sure the end was truly near.

But the blood work said it was. The blood work said my 21 year old cat had weeks to live, a few months at best. I knew this time was probably different and I probably would have to say goodbye to Bobby - soon. As Beau was bracing himself for his operation, I was also already grieving Bobby.

And, to be honest, I was a little, just a very little, afraid that Beau might die on the operating table. 

The day of Beau's operation arrived. He was on the operating table for hours, but finally, in the early afternoon, I got a call from his doctor, who said the operation had gone well and I could now come and see him. A friend came and got me and we headed downtown.

Beau looked awful. He had six tubes going into or out of him. He'd had an epidural. His face was white and beaded with sweat. His lips were a bluish white. He was on a lot of drugs so was barely coherent, barely even awake, and, as of yet, in no pain. But I knew he soon would be in pain - a lot of pain.

As soon as my friend and I walked out the door, I burst into tears.

We'd only been able to see him for a few minutes but were told we could spend more time with him in about an hour. When we saw him again, nobody had yet bothered to return his stuff to him, so, without his glasses, he was almost completely blind. In his drugged state, he didn't care about that. He just wanted his wedding and engagement rings back. He wanted that reminder that he's not alone. 

I became a bit of a mama bear and made a fuss about getting his stuff back. Then I cried some more, in front of him. I felt like a bad wife. I was supposed to be the strong one. He was so drugged, he couldn't understand why I was crying. He kept assuring me that he was just fine

Later that evening, when I was home, he again assured me that he was fine, and there was no cause for worry or sadness at all. He sent me this photo to prove to me how fine he was. It was funny, but all it proved to me was that he was very very high. I knew that he'd soon be in a lot of pain, and probably sick to his stomach, and I wouldn't be there to comfort him.

I was right. In the middle of the night, he was overcome by nausea and panic. I know how bad his panic attacks are, and I know how much he hates feeling nauseated, so I know it was really really bad. He didn't call me. He's like that. He didn't want to wake me up. He only told me about it in the morning.

I made the mistake of telling him how much pain I was in from having had to use that crappy wheelchair the day before, so he wouldn't let me come and visit him on that second day. He said his worry about me would only make him feel worse. I hated that. I hated that my disability, and the world's ableism, were preventing me from being there for my guy.

But I was there on the third day and he was still bad, not as bad, but bad. He still had all kinds of tubes coming out of him. An introvert, he had no privacy. The room was far too hot. As they weaned him off morphine, his nausea had abated but his pain was surfacing. His bowels were angry. The doctors were making him measure his poo and pee output. 

Between his hospital bed, tubes, poles, and monitors, and my wheelchair and cane, we really couldn't touch.

Oh the indignities of the flesh!

I cried in front of him - again. 

At home, my home care workers, perfectly lovely women, were driving me out of my mind. I too am an introvert and I hate having strangers in my home for more than a few hours. They were there 24/7, getting everything just a little bit wrong, and needing more instruction than I had the energy to give. I struggled to bathe on my own. I just couldn't bear the thought of strangers seeing me naked.

I do sometimes get irritable with Beau when he fumbles trying to help me with this and that, but I hadn't realized how good he actually is at it. We've created a kind of physical symbiosis, his body knowing my needs often before I voice them, my body knowing how to reach out to him for the help I know is there. Besides, unlike the small-boned care workers, Beau's shoulders are so broad and strong, he's perfect to lean on, literally. 

It didn't take long for me to start to ache for his touch.

The care workers were also far more conservative than I am (most people are) so I felt restrained in talking freely, in simply being myself.

I felt raw, unsafe, scared, alone. I made this little tableau to signify that my child self is guarded and okay, no matter what.

On top of it all, I'd just started taking gabapentin for my pain, and, on doctor's orders, was raising my dose every few days. It left me feeling fuzzy and exhausted, even more exhausted than I usually am with all my pain, even more exhausted than I would normally be by constantly comforting Beau via text, and worrying about him night and day.

I would usually have taken comfort from my cats, and I tried, but I was so worried about Bobby, it was hard. 

My squirrels helped. You know the ones: the two sisters who can get into my supposedly squirrel-proof feeder. 

It was fun to watch the male goldfinches slowly putting on their bright yellow, spring plumage. All the birds were getting excitable, prone to squabbles and dramatics, as they always do in spring. 

I felt like Beau and I were both missing spring. Instead, we were bound up in the darkness of pain and mortality.

I tried to take in what I could, in glimpses, here and there. 

It was Passover, the celebration of emancipation from slavery, an important holiday for me, a child sex trafficking survivor. But I was too tired and worried and isolated to do anything for it but think a little, here and there, about freedom.

The bed was vast and cold without Beau.

Through it all, Beau texted me constantly, in pain and fear, alone in a chaos of patients, doctors, and nurses. And I did my best to comfort him. One evening, I sent him this silly, unflattering photo of me ready for bed. It made him so homesick for his "boo," and her "square smile" that he cried. 

Love isn't about looking good. It's about comfort, support, companionship, being a team. Every time I visited Beau in the hospital, there was an old man in the bed beside him whose wife came and stayed with him all day, every day. Beau said that when she left at night, he could hear the old man saying tenderly to her, "You're a beautiful woman. I love you." He meant so much more than that she was beautiful to look at. I think Beau and I reached a new level of understanding that fact. 

Finally, after six grueling days, Beau came home! He'd lost ten pounds.

We were so happy to see each other! We could not stop holding hands, hugging, kissing. The body is so important. In some ways, the body is all we have. When it suffers, it's all we know. When it's touched, literally touched, by love, the soul revives.

We could also now be ourselves again. I could feel myself unfurling from some tight clasped hiding space inside. My home care worker said I changed completely when Beau got home. She said she'd never seen love like ours. 

(In a few days, she took a day off to have an arranged marriage to a stranger. She was back at work the next day. Love in marriage was as foreign to her as arranged marriage was to me. I admit, I was disturbed by her situation, disturbed by the idea of her having to be sexually available to a man her mother had chosen for her. It reminded me too much of my smother pimping me.)

In a lot of ways, the hard part of Beau's recovery was only jsut beginning. Beau was in rough shape. He was off morphine and the pain was coming on hard and fast. It was brutal, inescapable, and terrifyingly like the pain of sexual abuse. He had a lot of panic attacks. He'd wake me in the night, clinging to me, shaking and crying like a small child. 

And I knew how to take care of him. I wasn't useless at all. I came to know that, even though I couldn't do the practical, household stuff for him, there was no-one better than me to take care of him. I know pain. I know terror. I know flashbacks. I know pain that is so like the pain of abuse, it sends the body and soul spinning with fear. I know pain so bad, nothing else exists but pain and breath, breath and pain. I know how to survive all this, and I was able to teach Beau how to survive too.

And I was just there, present, touching him, soothing him, safe. It matters so much. In those moments, he learned how much he does help me when my pain is at its worst and he feels helpless to make it go away. In those moments, I learned the agony he goes through, watching me suffer and having no power to fix it. 

I also learned that the person who is suffering, the person in such great need, can still be a comfort to the person who is helping. Even as I took care of him, his presence and touch, the very fact of him, was a comfort I'd badly missed while he was in the hospital. This made me see that, even when I'm at my worst, crying out in pain, my love for him still nourishes him, as his nourishes me. 

I felt strong in a way I haven't in a long time. I wore my Wonder Woman nightie, because I felt a little like the superhero Beau always says I am.

Meanwhile, my dear Bobby seemed tiny, weak, fading, diminished. He was still enjoying life, but not as much. I knew his time was coming soon.

Look at what Bobby once once: huge, luxurious, opulent, leonine. 

We were all - Beau, me, and Bobby - diminished by the frailties of the body. 

Beau, very frustrated because he's not yet well enough to get a haircut.
We're not perfect as we struggle with that reality. Beau did get cranky and snippy from time to time. I totally understood. Who wouldn't? It made me more forgiving of myself for the times that I too get cranky and snippy because the God damned pain just won't f-ing go away!

Through all of it, the boys (Beau's sons, my stepsons, now 13 and 16) were wonderful. They stayed with their mother while Beau was in the hospital and in the worst of his recovery, but they cooked huge meals for us and brought them over for us to freeze and eat later. They make an amazing spaghetti sauce. They came over after school to help out, doing laundry, washing the dishes, filling the bird feeders, and doing anything else we needed. They were so grown up and helpful, we got rid of our home care workers and had them come home earlier than planned.

But Bobby. Dearest God, Bobby. He was fading faster and faster. He still liked a nose boop or an ear scratch, but living was clearly an effort now.

Bobby the Belly Boy, about seven years ago 
Over the course of a week, my playful boy who used to prance around the house like he was dancing, who used to love his belly rubs...

... came to the point that he was barely able to walk. He seemed confused, painfully pacing the house as if looking for something that would make him feel better. He was constantly thirsty, nearly falling asleep with his head in his water bowl, but unable to to fall into a deep, comfortable sleep.

He stopped eating - except tuna sashimi. So tuna sashimi it was. We knew it was now a matter of days or even hours, so we did what little we could to make him happy.

I called a vet who makes end of life house calls. He said we should try giving Bobby subcutaneous fluids and, if that didn't help, to call him back. The fluids helped. He fell into the first comfortable sleep he'd had in a few days.

But only for a few hours. Then his pain, thirst, and pacing were back.

I called the vet.

On that last morning, Bobby's life revolved around tuna sashimi ... 

And love, which, for Bobby, was touch.

To the very end, he looked hopefully at Beau, hoping for pets. 

Everyone knows that Beau's pets are the best pets.

Except, of course, for toe rubs. This is the last photo we took of him, rubbing against my foot, his very favourite thing in the world, and, yes, more than a little bit silly. 

He was still my silly boy. When the vet gave him his first shot, the one that put him into a deep sleep, Bobby first stood up to take one final look at the world out the window, then fell down - and snored, that sweet, gentle snore that I'd always loved. He was so peaceful.

We put his head on my lap so he was comfortable. I petted him and listened to that little snore, like a woman's sigh, for the very last time. And then we let him go. 

The vet wrapped him in a blanket, I kissed his velvet head one last time, and he was gone.

We let Milo come and see him, smell him, and say goodbye. He's been randomly crying ever since, and he's needed our touch more than he used to. He misses his friend.

When you give the gift of death to a loved one, you give them a piece of yourself. It dies with them. That sacrifice is the hardest gift I've ever had to give.

In the coming days and weeks, I couldn't stop thinking about Bobby as he once was. 

Me at 26, holding Morgan and Bobby. Bobby was still a kitten.
I couldn't stop thinking about how young he and I both were when we first met, and about all we'd lost together, all we'd been through together. 

I also began missing my cat Morgan all over again. I hadn't realized that Bobby was my final link not just to my youth, but to Morgan too. For 27 years, I was the girl with the huge black cats. They were always there with me, through it all.

It was the end of an era.

I felt very very old. My God, I'm nearly 50. 

My body still doesn't understand that Bobby's gone. When I near my daybed, my eyes look for him, my fingertips anticipate the silk of his fur, my legs make room for him as I lie down. But he's not there.

The mind may know about death, but the body memorizes love, memorizes the body of the loved one. After all, what are we but bodies?

As we grieved, Beau's body getting better, week by week. This is him getting as comfortable as was possible (not very) as he healed. You can see the strained look of pain and even fear in his eyes, but he was coming along.

Beau's beauty, intellectual curiosity, and playfulness were all coming back. 

He was getting bored.

The 6th anniversary of the day we met rolled round, and I gave him this fun, vintage shirt from the 1970s. 

Finally, there came a day when he was strong enough for us to dress up and go out for a few hours. It felt like a celebration, not just of his recovery, but of the way our love has deepened through this difficult time. I can see us old together now in a way I couldn't before. I can see our bodies ageing and each still being beautiful to the other.

Look at the way he looks at me! I'm so lucky. I see a slightly pudgy woman with lipstick on her teeth, sitting on her walker and hamming it up. He sees the woman he loves finally able to have to have a good day after a month of mutual suffering. 

Who the hell cares about my sagging chin or the fact that my bra is showing? Who cares about all the new scars on Beau's belly, or the fact that we both now have bellies and we didn't when we met? 

My ageing arms aren't the point. The point is that I'm still here, and I can derive great joy from wearing a beautiful dress ...

... and growing old with my co-conspirator in life.

He's well enough again now that it's okay for me to let myself feel small with him. He's my tree again. I missed my tree. I love that I feel safe enough with him to feel small. I'm 5'4". He's 6'1", but he says he feels safe enough to feel small with me too.

Dress: Lazy Bones; Shoes: Cobb Hill; Earrings: bespoke; Ring, necklace, pendant: vintage
I'm reminded of the old man in the bed next to Beau's in the hospital, telling his wife she's beautiful. Beau and I know each other at our worst, but we see the best in each other, even in the body's infirmity, which, for me, has come so very early. I am hunched like an old lady. 

am my body.

And I am me. He loves me

And Beau is Beau, hating attention, but dressing up too ...

... in his wedding shoes ...

... finally able to drive again.

We were so excited.

All we did was go for coffee and play cards! Such an old couple thing to do.

But it was so fun, just to be out and about again with my love ...

... feeling pretty.

I think you need a better look at that ring. It goes well with diamonds, don't you think?

Everything goes well with diamonds. They brighten a complexion, yes? 

The young gals who work at the cafe said I looked great that day. True, I was wearing more makeup than usual, including highlighter, but I think it was mostly love that made me look good - love and relief that my Beau was going to be okay. 

My first visit to the chronic pain clinic
And then I was diagnosed with fibromyalgia. 

I guess it makes sense. Fibro is caused by trauma, like PTSD of the body. Lord knows, I've had plenty of trauma in my life! 

We co-conspirators will weather it somehow.

What else can we do? We'll love each other and take care of each other the best we can, tortured bodies and all, whatever may come.

We've decided to get a pair of kittens this summer. It's the beginning of the next chapter, maybe even a new era.

But I'll never forget the one that has just passed.

In memoriam - Bobby 1996 - 2017. 

(I'm sharing this with Fashion Should Be Fun, Adri Lately, Tina's Pink Friday, Disability Thinking, Not Dead Yet, Not Dressed as Lamb, Style Nudge, and Top of the World Style.)