Love letter to my sons.

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After more than 10 months, I got away from the house. Every time I look at the grey in my dogs’ muzzles, I have a panic about time slipping by and the knowledge that Bowie is hurtling towards end of life. He is 9 and Rhodesian ridgebacks typically live 10 to 12 years. Bowie is big — the tallest ridgeback I’ve encountered in the flesh or online — I fear he’s more like a small great dane and they typically live 6 to 8 years… So, I’m bracing myself. Truth be told, I’ve been bracing myself for their ends-of-life since they were kids.

Riley was originally found emaciated to the point that he couldn’t stand up and had already been in two foster homes before coming to us. We were meant to be a foster home, too, but, after he was placed with two more families that didn’t work out (and my emotional meltdown with each goodbye), we knew he was meant to be ours. And, wow, was he meant to be ours. I don’t think any other pack would have worked so perfectly. He almost died from some gastrointestinal awfulness soon after we adopted him. I watched him lie on his side, dead-eyed, weakly vomiting blood while the vet told me he thought he might not make it. Not long after that, Bowie hurt his back at the park and I lifted his 110lbs into the car with some sort of super-human mother strength and raced to the emergency vet. I was healthy then, but, still, that’s more than I weigh.
[NB: Of course I called the clinic to verify his weight at that visit.]
[NB: Of course I made sure they weren’t busy before I bothered them with that question.]

So, losing them has been at the forefront of my mind for most of their lives. It may sound morbid, but it makes me appreciate every day that they’re here and I never take a moment for granted. I will miss this hair one day, I think as I pull it out of every meal I eat. I will miss his drool one day, I say as I almost brain myself slipping in the saliva pool on the kitchen floor. I spend an inordinate amount of time cuddling them, memorising every curve and bump of their bodies, making sure I’m always conscious and grateful for their presence.

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I will never forget the first time I took a mobility scooter to the cemetery for a “walk” with Bowie (at the time, I didn’t trust Riley to stay close off-leash, so he went to doggy daycare instead). We had been visiting the cemetery since Bowie was a puppy, but it had been a year since I was housebound and that first year was the longest and sickest of my illness. He lept like a puppy when we got there and I wept as I watched him. I think it was as important for him to see me out as it was for me to be out. Last year, both of my dogs’ mobility declined sharply. Riley is arthritic and Bowie is an old, creaky man. My number 2 wish (after getting better) is to fill their time with as much fun as possible. If I could, I would take them someplace different every day, wear them out, introduce them to novel smells and new friends (every time I’m flabbergasted or frustrated by my acute sense of smell, I think what the world must be like for a dog whose nose is tens of thousands of times as sensitive as a human’s. While a dog’s brain is only 1/10 the size of a human brain, the part that controls smell is 40 times larger. Can you fathom that even slightly? Whenever I see someone yanking on a dog’s leash, I think, imagine what he is smelling down there! Give him a minute!).

My dogs are my kids, my caretakers, my comedy, my inspiration, my reason for pushing myself, my main source of joy.

So, this is all a big preamble (pre-ramble, more like) to the story of our recent road trip to the coast (in a future post) and why it was so important to me. I can’t fly with my dogs to India or Africa or even to different parks very often, but once a year for the last 3 years, we’ve made it to the seaside. This time was different, though. This time I was stronger, I wasn’t as crushed by poisoned pain and my husband and I were happier, not desperately grappling for handfuls of different memories within the blind freefall of sudden severe illness survival. Because that’s what it has felt like: an initial period of confusion, fear and searching, followed by 3+ light-speed years of gasping for air and kicking like mad to keep our heads above water, learning how to navigate this life. And in all that time, it’s felt like we both had faces bowed down in grimaces of pain or duty, grief or worry, eyes meeting fleetingly, but blinded by our separate burdens. So, I remember those previous journeys to the ocean as a bit desperate, slightly lonely and only partially successful. But this time was different. Not easy, not perfect, but more like real life. Like a life where I’m totally present with my husband and easily walking the beach with my sons.

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Hounds of Love

[Written September 30th]
When I got sick, I started having horrific nightmares about my dogs. At least once a week every week for the last 3 or 4 years, I have dreamt that they’re in danger and I’m too weak or too sick to help them. Last night I had no voice. For an eternity, with little energy and full of sickness and while wrangling my smaller dog, I filled my lungs and tried with all my might to scream for Bowie, who was gone and in definite peril. Nothing would come out but a croak. I begged the other people in my dream to help, to shout, run, drive–do all the things that I couldn’t do–but nobody would pay attention. That’s always a theme in these nightmares: imminent death, crippling disability and nobody is listening, nobody is helping.

I woke up breathless and moaning, as I often do. This love is so fierce, sometimes I think I would take a bullet for my dogs. I cannot fathom having an actual human child. My heart would explode. Parents out there: to me, you are incomprehensibly brave, strong and selfless. And SICK parents–chronically ill and disabled parents–those of you that may have nightmares about not being able to protect/save/find/help/comfort your children–you live (and dream) through something I can only get a small glimpse of with my dogs. Hats off to you all, courageous warriors. And I hope everyone stays safe.

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Lilac Wine

It’s ten in the morning and I’m sitting cross-legged and barefoot at our garden table in the warm sun, wearing a skimpy summer dress. My husband has created an oasis in the middle of the city. There is a fountain gurgling methodically and bird song all around me. I can hear children playing in the school yard a few blocks away and, every hour, the church bells chime the time. I close my eyes and I could be in Italy or France. I hear no airplanes or traffic. I’m sitting under a tall birch tree in April and, although I’m allergic, I’m having no problems. Lilac bows its scent over my head and, although synthetic perfumes now make me wince, I find the lilac’s aroma intoxicating.

If I were healthy again, I would do it all different. I would take the time to notice every bud and leaf, I would revel in meditation and have friends over all the time. I would visit farmers’ markets and experiment with recipes, host dinner parties and enjoy scrumptious desserts. I would take long walks with my dogs and listen to more music. I would never, ever take one minute of health for granted.

Today, I can’t stop smiling. I am outside, my body doesn’t hurt and I’m feeling pretty good. I’m getting stronger, I’m not lonely and the fears of the future have been sizzled away by the sun. We will undoubtedly have to leave this home eventually and, perhaps that will even be a good thing for my health, but, until that day, I will be grateful for the beauty wrapped around me, my family’s health, and for how fortunate I am.

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Rag and Bone Blog Anniversary

I started this blog one year ago today. I never thought it would become a permanent part of my routine and something that gives me such pleasure. I started it as a daily tracker of treatment with low-dose naltrexone. The original url was ldndiary.com.

Since then, I have sacrificed most correspondence and contact (emails, cards, phone calls) and used my limited energy to write blog posts so that friends and family will all have a place to go to see how I’m doing. Of course, relationships are a two-way road and my hope is that my loved ones will continue to contact me. I will answer or pick up the phone when I can. If I can be an ear for someone or a shoulder to cry on, it makes me feel like my old self again ~ a reciprocal, functional friend.

This is a very tough line to walk for everyone involved. I’ve had friends tell me they thought I just wanted to be left alone. I am a very private person in some ways. I will lay bare my feelings, my opinions and my thoughts, always ~ I can’t be shocked or grossed out, I am rarely offended ~ but, I’m oddly private about sickness because I don’t want to accept that this happened to me. I want to believe that I am healthy and vibrant. I left my job and only told my bosses why. And I even told them half-truths. Everyone I had worked with for over 8 years didn’t really know what had happened. Eventually, I sent a select few individuals a link to my blog and said, “I’m not purposely out of contact. This is what is going on.” So, I understand completely why people didn’t contact me ~ they didn’t know and, if they did, they were trying to respect my privacy and hermit-ism.

Recently, a friend on Facebook commented on what a good book Unbroken is and I took the opportunity to comment that the author Laura Hillenbrand‘s story is as incredible as Louis Zamperini’s. I also mentioned that I was dealing with the same illness. I’ve been sick for almost 2 years and that was the first time I had said anything about ME/CFS on Facebook (and it’s not because I have thousands of friends on there ~ I’m selective; I’m only friends with people I know and like).

I don’t know if I’ll ever accept my limitations. I used to think of myself as a workhorse, a rock, an efficient multitasker. I spent my life feeling exuberant, passionate and ambitious. At work, I had huge responsibilities, I was in charge of seven restaurants and, no matter how stressful it was, I felt trusted, knowledgeable and accomplished ~ all traits that help self worth. This illness stripped me bare. Suddenly I felt weak, dependent, unattractive… Suddenly, my dreams for the future were out the window. I worked so hard to get where I was in my career and I had only just got there ~ I’d only just started to feel comfortable in my expertise and financially secure. My support network and any activities that gave me joy vanished… This on top of my new broken body.

I guess, after being sick almost two years, I’m finally coming around to the idea that it’s not a failure, not shameful. We all will grow old and health will fail. Mine just happened a little earlier and a little more abruptly. That’s what I tell myself. And I squash the voice that says No, this is worse than the majority of health problems. What do I know? I haven’t walked in anyone else’s shoes.

I think finding friends in the blogging community and making contact on ME/CFS forums has helped in ways I could have never imagined. I truly care about these people that I’ve never met face to face. I wonder how they are and I worry when they don’t write. They have made me laugh and cry. They comment on my blog and I feel like, I may be housebound, but I’m not alone. I’d never read a blog in my life until this day last year and now I am so incredibly grateful for my little circle of online friends who understand what I am going through and give me strength.

Thank you to my family for visiting, cheering me on and sending care packages to cheer me up. Thank you to the friends who call me, confide in me and tell me all the time that they’re thinking of me. And thank you to my blog family ~ my blamily. 😉 You know who you are. I wouldn’t finally be finding acceptance and hope without your help.

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