I love this time of year. For someone who hates the heat as much as I do, the cooler temperatures are a relief and a joy. Is there anything cozier or more comforting than warming up after being briskly chilled? It’s one of my greatest pleasures. And the textures! Soft earth, crunchy leaves, a buffeting wind…this season is sensational in the truest sense of the word. I think what I love most though are the gray storms rolling in, tossing the multi-hued leaves, interspersed with skies that particular shade of vivid blue that only shows up in the fall. I never get tired of the autumn skies.
The dichotomy of the skies feels very familiar to me. The cycling of my bipolar disorder is very similar to the constant displacement of roiling gray and vibrant blue and vice versa. Like most people, the last couple years have left me particularly vulnerable to mental and emotional fatigue and more rapid, and therefore vicious, cycling between the extremes of my condition. I’ve been finding a lot of insight, though, in the beauty of this mercurial season: there is magic in the gray and the blue, the storm and the quiet. When I was younger, I thought that the depressive episodes were purely negative while the manic ones were good for me, since I felt so much more powerful and alive during them. Then, in my late 20s, when I realized how many more unwise decisions I made during my manic episodes, I began trying to avoid them at all costs. Now as I am older, and hopefully wiser, I have realized that the real solution is to find balance between the two. It is ok for me to embrace what is positive about my swings, while using the tools I have learned to regulate the negative aspects. Balance has become my ultimate and daily goal.
Crochet really has become one of my go-to methods to maintain emotional stability. And just like the autumn season, it combines the elements of color and texture (and coziness!), all of which help ground me in the creative process. I personally have found very little else more effective in both soothing and stimulating my mental equilibrium.
In that spirit, I wanted to share a quick cowl pattern with you to work on during this changeable time. It’s soft and colorful, and it works up really quickly. It would be a great handmade Christmas gift too. And if it helps to keep you balanced during your own storms and lulls, so much the better.
Velvet Slouch Cowl
Size: 10.5” x 12.5” (27cm x 32cm)
1 skein Bernat Crushed Velvet (size 5 bulky) yarn. I used Cranberry Cider in these pictures.
Size K (6.50 mm) hook
Notes: I use a one chain turning chain instead of the more common 2 chains for hdc in this pattern; the turning ch does not count as a stitch throughout.
Work stitches tightly, as velvet yarn has a tendency to worm.
Ch 75, join with sl st.
Row 1: Ch 1, hdc in first ch and across. Join with sl st in first hdc. (75 stitches)
Rows 2-30: Ch 1, turn, hdc in BLO of first hdc and across. Join with sl st in first hdc. (75)
When my daughter was around 3 we walked into a Disney Store we were passing because of her insistence that she needed to see its contents, making sure she knew that we were not planning on making any purchases. She tore around the store looking at all the delights on display while my husband and I followed in her wake. We ended up near the baby dolls, which were all toddler versions of the Disney princesses. We asked our girl which one she liked, and without a second thought she pointed right to the Pocahontas doll. We asked why she liked that one best, and she said matter-of-factly, “Because her me!”
We were surprised at how perceptive she was, because my daughter is, in fact, Native American. We hadn’t watched the Pocahontas movie, so she had no way of knowing that the character was Native American, and there were a handful of other princess baby dolls that approached my daughter’s appearance in skin tone and hair and eye color, but something about that Native American doll resonated with my own toddler. She recognized herself.
Of course we bought the doll.
Since then, I have found myself searching for more experiences for her like that, without much luck. Despite Native Americans being the first peoples in this land, there is very little representation of them in our media or culture. I fight to find role models for my Little Bird, and I worry that she is drinking in the stereotype that she is invisible because she looks different from the people she sees so prevalently in every form of media. It worries me more because my husband and I also belong to the ethnic majority, so she deals with looking different even in our own home.
We have combated this perceived difference in a couple of different ways. One is by talking about skin, hair, and eyes in terms of shade and not ethnicity. For instance, we like to say that Daddy’s hair is like the morning (blond), Mama’s hair is like the sunset (reddish), and her hair is like the night (black). We do the same with skin tone: my skin is about as far as you can travel to the pale side of the spectrum, while my husband’s is a goldeny color, and my daughter has gorgeous caramel colored skin. We point out the beautiful people all around us, of every hue, and we look for differences to celebrate.
Our other strategy was one that caused me a lot of trepidation at first. I always knew that it was essential for my Little Bird to be connected to her heritage. I could not be responsible for her losing such an integral part of herself. So we started taking her to powwows. The first one we went to was very small, just a gathering to celebrate Indigenous Peoples’ Day in the Urban Indian Center near our home, and I was horribly nervous. There is a long, bitter history of white people taking the children of Native Americans, and I was worried I would be viewed in that way. How could I explain to them that the birth mother had felt strongly after our first phone conversation that her baby needed to be with us? How would they know how intensely I felt that my daughter needed to be raised with strong Native influences? I didn’t want to divorce my daughter from her culture or appropriate that culture for my own uses; I just wanted her to know who she was and where she came from.
As we walked into the Center, I couldn’t see any other Caucasian people there. I felt like my hair was bright orange and I glowed. But I took my daughter’s hand and walked her, beautiful in her Apache camp dress, deep into the center of the room. People made room for us, but didn’t speak much to us at first, understandably. No one knew who we were. But then they started asking us questions. Was this our daughter? What tribe was she? Had we been to a powwow before? As I answered, I felt no judgment. In fact, one woman told me it was a good thing to keep her connected to her culture the way we were trying to do.
And then the Grand Entry began.
For anyone who has never been to a powwow, the Grand Entry is where all the dancers come in dressed in their regalia while the drum circle plays and sings to kick off the festivities. I cried as I watched these majestic, joyful dancers circle the floor while the music pierced my soul. These were the people I had brought my daughter to see: people who looked like her, who knew who they were, who reached out to strangers in friendship, who lived with a deep spirituality in their daily lives, who danced clear-eyed to the heartbeat of the drum.
We have been to many powwows since then. I get teary eyed at every Grand Entry I see, and I outright cried when my daughter asked if she could dance too and went out fearlessly into an Intertribal dance when she was five. We have become more involved in the community, attending Native culture and art classes and going to family potlucks, and my heart swells when I see the tenderness in the eyes of the elders who care about her and know her by name. And there are even a few books and shows we have found that feature a Native American character in positive ways.
But we still can’t find Native American dolls. My mom bought her a doll that had a Native American look, although I’m pretty sure she was made to be Hispanic, so now we have two. Not that we need many; my daughter doesn’t love dolls. She’s not into playing mom, and her dolls are always her little sisters. But she does like to get them dressed up and ready to do different activities, even if they habitually sass her, which she complains to me about all the time. (I guess they are like their older sister.) And I like to have her see that someone out there is making something that looks like her.
So this November, Native American Heritage Month, I thought I would make an Apache dress for the Little Sisters, and I began looking for a pattern. I found nothing.
So I made it myself, based on what I was able to research about authentic Apache dresses. I thought about making a camp dress, but I wanted to do this pattern first. Maybe I’ll do a camp dress next year.
I used variegated yarn to simulate the beading that often went on these dresses and long fringe which was very common. I made two different sizes: one for the 16″ Disney doll and one for the 18″ doll.
If you’ve been looking for an Apache dress, feel free to check out the links to the patterns. But even if you’re not, I hope you find beauty in all the differences surrounding you and that you have people around you who remind you of where you come from and who you can be if you choose.
And during Native American Heritage Month, I hope you remember the beautiful people whose spirituality and stewardship are so integral to our land.
Lao Tzu said that “Simplicity is the ultimate sophistication.”
As a crocheter, I find myself drawn to all kinds of different patterns, from wildly colorful to calm neutrals and difficult to easy. My pattern choices depend a lot on who the end product is for and what I feel intrigued by at the moment. I don’t make many things for myself, so I don’t often put much thought into what I, personally, would want out of a project.
A couple years ago, however, I found myself swept away in a tide of velvet. I was entranced by the softness, the colors, and the slightly heavier drape of the many velvet yarns that came flooding into the market. I ended up making lots of cowls for gifts that year, experimenting with the many different brands and colors. And I couldn’t resist making myself a handful of cowls with some of my favorite colors.
What I discovered over the next winter was that these simple cowls made my outfits shine. They were crafted in only one color using a very simple stitch, usually half double crochet, to avoid distracting from the luxurious texture of the velvet. The soft, somewhat heavy feel of the yarn was comforting, and a cowl is super utilitarian because it protects your neck so well from those icy drafts that winter loves surprising you with. Imagine my surprise then when, even when I threw one on with a hoodie and rain boots to take my daughter to school, I received compliment after compliment. The very simplicity of these easy, sturdy projects in their luscious yarn and vibrant colors made me look more sophisticated.
Or at the very least they distracted from the inevitable hodge podge of garments and moods that mornings always induce in me. Which is also a very workable situation.
So I thought I would throw up a super simple cowl pattern in a new velvet yarn I discovered this last year so that you can feel a little more glamorous in the midst of your own hodge podge.
The bonus is that it will only take you a couple hours to make, so it’s a great gift as well!
Simple Velvet Cowl
Loops & Threads Chunky Velvet, 57 yds (2 skeins) or other super jumbo (weight 7) yarn (You could also try doubling up a weight 5 or 6 yarn)
Size N hook (10 mm)
Measurement: 14” wide x 8” high
Gauge: 4” square: 5 hdc and 4 rows
Note: Turning chain does not count as a stitch.
Ch 36, join
Round 1: Ch 2, hdc across, join to first hdc (36)
Round 2: Ch 2, turn, 2 hdc in same st, hdc across, join to first hdc (37)
Rounds 3-6: Ch 2, turn, hdc across, join to first hdc (37)
Round 7: Ch 2, turn, hdc across to last two st, hdc2tog in last two st, join to first hdc (36)
Round 8: Ch 1, turn, sc in first st and across, join to first sc, fasten off
A few months ago, on a cold, snowy day, my husband, daughter, and I were lying cozily in my bed. I looked up from my reading to see my husband writing on his laptop and my daughter watching a fairy tale on the tablet and, as I listened to the snowflakes brushing whisperingly against the window beside me, I felt a rush of contentment and gratitude that we had warmth and companionship. Then I noticed, with a happy jolt of satisfaction, that all of us were cuddled up under our own blankets, and that those blankets were the ones I had made for each of us.
I forget about these blankets because we use them all the time; they have blended into our everyday lives and don’t seem as special sometimes as the things I make to give away. But each of them were made to personal specifications: soft neutrals with no big holes for his toes to stick through for my husband, a cloud-soft nubby yarn in “turqwawoise” for my daughter, and one of my favorite lacy patterns, a bargello, in a cool, light cotton for me. I may forget about the work I put into these particular afghans, but they are well loved.
And that is one of the reasons I love to create: to have a tangible reminder that someone else is worth my time and effort.
Don’t get me wrong: the act of creating something, especially with my hands, fills me up; I get a sense of that spark of divinity that we all carry around inside us. The vivid bliss of getting to play with color, the peace that comes with feeling the softness of the yarn run through my fingers, the sharp joy of seeing something that at one time existed only inside my head be made material, all of that is a tremendous motivator for me to continue creating. (Not to mention that I truly fear that without the calming influence of my crafting, my sanity would be irreparably frazzled.)
But on that snowy day, I realized how much gratification I feel knowing that something I made is loved. That’s ultimately why I made it, after all. Even if the person I made it for doesn’t remember that I had anything to do with it, I hope my creation is loved, and giving the comfort that inanimate things can sometimes give in return.
This time of separation, when there is so much loneliness and anxiety, is a wonderful time to think about what you can make for someone else. It could be a comforting scarf or afghan, a lacy thread bookmark, a fun amigurumi toy, or whatever you think will help the person you have in mind. Spread some of that soft, colorful love around!
It will probably help keep your own sanity from getting frazzled, as well.
For the last year I have been grappling with some unwelcome truths. I’ve been silent on this blog in large part because every time I start to write, every time I enter the cutting whirlwind that my mind has become, my spirit shrinks away from the exhausting task of explaining all my sorrows. I read a description once that said that despair was a cold desert devoid of life, and it’s true; sadness is a hollow pain, anger is a stinging fire, but despair is an aching emptiness. When I think too much or too long about my current situation, I feel like I am endlessly cycling through those three emotions, though I seem to spend most of the cycle in that cold desert.
Not that my life is without happiness. Even without the little delights like the impossibly blue autumn sky, the wind soughing through brittle yellow leaves, and the so very comforting feeling of cold feet slowly getting warm under an afghan that brighten my days, there is that little sun, that precious joybug, my Little Bird, who fills every corner of me with happy light. No matter how hard dialysis was, no matter how ragged I feel, physically or emotionally, knowing that I am coming home to her calms and lifts me. Being a family with her and Kohl is the most important thing in my life.
That highlights one of my pains, though. I feel as though I am being robbed of my time with her. Three days a week I go to a dialysis clinic, get hooked up to a machine through a catheter attached to my jugular vein, and sit in a chair while a machine cleans my blood for four hours. I leave a little before six, before she is awake, and I get home around 10:30, so it’s not as though I am missing huge chunks of her life, and an unexpected benefit of my absence is that she and Kohl have some fantastic daddy-daughter time on a regular basis. Still, after twelve years of longing for her, every moment feels precious, and I resent missing out.
That’s my sadness.
The anger comes because it seems unfair that my previous surgeries have directly contributed to my high level of antibodies, which is the reason neither of my brothers who have been tested are able to give me a kidney. I am frustrated that it took so long for my medical team to get my hemoglobin levels under control, which led to four blood transfusions, another cause of my antibody level. I am tired of being pressured to get a fistula, a permanent joining of an artery with a vein in my arm. And every time I’m too sick to go to a long awaited outing, or I miss out on an important occasion because I have to go to dialysis or have a procedure done, I feel bitter that one more thing is being taken away from me.
The despair hits me when, after again running through the former two topics, I remember that because of my antibodies I could be spending years in this same situation. The helplessness I feel is both infuriating and debilitating.
The real emptiness creeps in because I don’t know how to talk to anyone about my pain and my loneliness. A terminal illness, like so many other kinds of tragedy, singles you out in ways that are almost unknowable to others. I remember once being asked by a family friend what it felt like as my kidneys were failing. I tried to explain by describing how I could feel my body dying by degrees, that every day I was closer to death.
“Well, that’s true for everyone,” she said dismissively.
I don’t know if she felt that I was aggrandizing myself and needed to be taken down a peg, or if she was just uncomfortable with how open I was being, but it was one of the first times I realized that very few people want to know how I am feeling when they ask how I am feeling.
In addition, I already feel like I talk about my kidney disease all the time, though not in great depth. You know those people whose lives are so consumed by one thing that all conversational roads lead to their own particular Rome? Sometimes I feel that I have two discussion settings: my daughter and my disease, and, believe me, stories about my little girl are a lot more entertaining.
I’m not sure how to break the cycle. Join a support group? Break down in front of one of my closest friends and hope they aren’t made horribly uncomfortable by a situation they can’t do anything about? Spend all of my time reading escapist literature to avoid my pain?
I don’t know the answer. Right now I’m fighting my way through each day, trying not to let my imagination speculate on how many more days of struggle might be ahead of me, and writing this post because, unfortunately for all of you, this blog is about kidney disease and not my daughter.
You guys really signed up for the wrong conversational default.
I have tried to start this post so many times, but how can a handful of paragraphs accurately depict the miracles and upheavals, the pure, deep joy and the heart faltering terror, that became an everyday part of our lives so suddenly? They can’t, and so I’m going to have to just try to give you a patchy description of the last few months.
In February, after twelve years of (sometimes agonizing) waiting, Kohl and I were able to start the process to adopt a baby girl. It was a miracle, pure and simple. I’ve always believed in miracles, but I don’t really expect them to happen to me. I tend to view them more as faith affirming stories to help bolster my strength. This time, in the middle of one of the most desperate times of my life, emotionally speaking, the miracle happened to me. With me on dialysis and no discernible way to move forward with our adoption wishes, we were contacted by a birth mother who knows my sister-in-law. I talked to her over the phone, and by the end of the conversation, she told me she wanted to place the baby with us.
I have seldom spoken with someone whom I admired as much as I admire this woman. Her entire desire was for the happiness and welfare of the little soul she was bringing into the world. She knew exactly how hard it was going to be for her, but she was adamant about doing what she felt was right, and she has blessed so many lives through her actions. I truly love her, and my daughter will grow up hearing the story of how her angel brought her to our family.
Two weeks after that first conversation, Kohl and I were flying down to Arizona to pick up our little girl. (Kohl likes to call her Two Weeks’ Notice.) I have never felt so exalted or so terrified. I vacillated between holding her soft head to my cheek while my heart overflowed with the only perfect happiness I have ever known, and a paralyzing panic when I stopped to think about the awesome and awful consequence of being responsible for another being’s life. I had a lot of conversations with my mom and my sister, and thankfully they had felt the same way and reassured me that I would get to a point at which caring for this precious little bundle of bliss would feel doable. They were right.
Our dark-eyed Little Bird is the delight of our lives. Kohl is especially enamored, and I often have to chase him away so that he gets his projects done. He gets more time with her than many dads do, though, because he takes care of her while I’m at dialysis. Three times a week he gets four hours of pure daddy-daughter time, and sometimes more when I come home feeling especially weak. For the most part though, caring for our girl is easier than we thought it would be. She is a happy, sweet natured baby, and I can spend time with her lying next to her on the bed just as well as if I were jumping around with her.
However, I long for the day when I don’t have to leave her for hours at a time and come back weak and tired. I dream about getting a transplant and doing all the things with her that I am unable to do now, like swimming, long bike rides, milkshakes and fries, and, most of all, knowing that I will be there whenever she needs me.
Unfortunately, there is some doubt about whether I can get a transplant at all. With all the transfusions I’ve had to have, my antibodies are very high. I only have a chance of matching about 2% of the population. My brother is being tested, and he has a better chance than pretty much anyone of being a match, but there is also the possibility that he won’t be compatible and that, and this is my nightmare, I will have to spend the rest of my life on hemodialysis. There are not many things that frighten me, but the thought of never being able to escape the prison that dialysis makes my body skewers my heart with icy horror. I’m honestly not sure I could do it.
This is the point, then, at which I currently find myself; balanced between the hope and light that my daughter has brought to my life and the dark, lonely despair of sickness without relief. Please, if you feel so inclined, send your thoughts or prayers my way. I know that they help.
And maybe, if it’s my path, I’ll receive another miracle.
Every night my body burns with fevers, and every night I slowly bring my temperature down while trying to find a comfortable position. Every day I struggle to find the energy to make myself eat, trying to replace my overly depleted resources. Every other day I go in to a dialysis center and the nurses pull my blood out, a cup at a time, in order to clean it. My body knows it is unnatural, and it’s always slightly traumatized and weakened when the three to four hour treatment is over. I shuffle to my car, counting my steps so that I have something to focus on, and I go home and sleep for a few hours, trying so desperately to give my body some of the strength that it has been lacking so long. Every day passes as though I were in a dream; nothing matters but getting through that day, mere survival.
I’m sorry that I haven’t written. My peritoneal dialysis wasn’t working: the abdomen just had too much scar tissue, and my body was so full of toxins that my heart started having problems. They put me in the hospital and told me I would never do peritoneal again. That same day they took out the peritoneal catheter and put a hemodialysis catheter in my jugular vein. It’s been working on my toxins, but my body doesn’t tolerate it very well. It’s my nightmare, actually. I feel barely alive.
Hooked up to the hemodialysis machine
In part, that is because I don’t feel like myself. I’m slow, physically and mentally, and I’m so tired. I am very blessed with people who love me and want to help me, but they cannot comprehend, they are not required or expected to understand, the utter loneliness of a dying body. Every twinge and pain of my body reverberates loudly throughout me, while those outside, those with glowing health and vitality, sound muffled to me. They speak too loudly and move too quickly. Some of them are frightened of me, of the pain they can see in my face. Some of them treat me like a child, trying to fix my life for me. I think most of them are uncomfortable around me; they don’t really understand why I’ve changed and how they should react to that change. All I want to do is find someplace to rest.
The thing is, the thing that you can be dead sure about, is that I am strong. I am strong enough, and even a little bit stronger, to get through this. It isn’t always pretty; I don’t always look happy, I can’t always summon up enough energy to make everyone feel like I’m just the same as always, but I am unvanquished. My will burns stronger than my fevers, and though right now I am trapped in this crumpling, gasping form, when this physical gauntlet is run, I will shine incandescent.
The upper piece of gauze is where the catheter goes into my jugular. The lower piece is where the catheter emerges from the skin.
My brother wants to give me a kidney, so they should start testing him soon. It will probably take a couple of months. In the meantime, I will burn, and sleep, and count my steps, because sometimes life is just gritting your teeth and making it from one place you can sit down to another. And I am strong enough for that.
I apologize for waiting so long to post; our lives became super hectic this last month, with visiting family members, lots of doctor appointments, and various commitments we had to fulfill. In addition, I was in charge of writing the program that the children in our church put on to show their parents what they have learned, and Kohl directed a short film (in the middle of editing his feature!). I was asked to be an extra (I’m almost entirely sure I was asked just because I have long hair), so I was on set. Now, however, things have started calming down a bit, and I can get back to my routine.
The short took place in 1830’s France, so even the extras got fancy costumes.
The air is just starting to change here. The days are still warm, but the breeze has just a touch of a chill in it, and the leaves are starting to turn. Every time one of those cool breezes hits my face, my heart leaps a little in my chest. Autumn is a time of change and possibility, and I can’t help but be happy as I look forward.
One of the best things coming up on my horizon is that Kohl will finally be done editing his feature film. He has been working so hard every day. He leaves in the morning, comes back for dinner, and then returns to the production office to keep editing. This has been his schedule for the last three months. I love how, as a filmmaker, he can work from home so much and how flexible his schedule can be, but, on the flip side, when he has a project deadline coming up he has to work regardless of whether it’s a Saturday, holiday, or special occasion. When he’s done (hopefully today or tomorrow), we’re going to take a day and just spend some time together.
In addition, my dialysis has been working really well. I’m not retaining fluid, and I feel a lot more energetic now that they’re being aggressive with my anemia. The only things I’m really struggling with is how out of control my emotions are and how slowly my brain works. I know that it’s only temporary, though, and it does make Kohl laugh to see me crying at commercials.
This is also the season when I start making all my Christmas presents. Last year I realized that I just don’t have enough time to make something for everyone, so I trade off making things for Kohl’s family and my family. I am so excited for the things I have planned. As I finish them, I’ll post them so you can see what I’ve been doing. In the meantime, here are some other projects I’ve been finishing up.
Socks I made for a newborn in our ward. Kohl wanted me to make them Rainbow Dash colors.
A tunic and furry boots I made for one of my friends who is about to have a baby girl. I gave her some pink leggings to go with it too.
A sweater vest for one of my friend’s twin babies. The sizing was tricky because the twins were premature, so they were a little smaller than normal, but I needed to size it for how big they would be in the winter. I’m still not sure if I got it right.
The other twin’s sweater. Her mom is a style maven, so I included different ribbons so she could mix up her look.
Hats for the down syndrome walk. I’m making some in men’s, women’s, girl’s, and boy’s sizes. These are the womens’ hats.
A closer look
The boys’ hats for the down syndrome walk.
The girls’ hats for the down syndrome walk.
I love this detail from the girls’ hats. It goes on the side and can look like a bow or a butterfly.
Of course, I have already been crocheting like a mad woman. Not only do I have literally a dozen friends and relatives having babies (and how can I resist making some adorable crocheted items for all those little joybugs?), but I also found out that one of my best friends is having a Walk for Down Syndrome in honor of her daughter Teila, and they are including a Craft and Bake Sale. I volunteered to send some crocheted hats, and I have absolutely loved working on them, for a couple of reasons.
Firstly, it’s nice to make something quick and without worrying about whether the person for whom I am making it will like it. I get to play with the colors and yarns I choose, some of which I’ve had for years just waiting for the right project. Secondly, when dealing with something as life-changing and all encompassing as a chronic disease, there is a real danger of becoming overly selfish. Your mind automatically reverts to survival mode, and nothing seems as important as getting what you feel you need immediately. I’ve watched this start happening to myself every time I start dialysis, but this time I made a goal to focus on other people more than myself, and opportunities to serve like this one help to counteract that selfishness. I still have a long way to go until I’m as generous as I need to be, but I have noticed that as I focus on being there for others the inevitable emotional upheaval and depression that come with dialysis have not affected me as much as they have previously. It makes sense, doesn’t it? You can’t be constantly thinking of how hard things are for you if you’re trying to think about how to make things easier for other people.
Plus, planning out what kindnesses I’m going to perform makes looking forward so much more pleasant.
Well, my life just became a lot fuller. I’ve got two pounds of fluid in my abdomen, 60+ boxes in my living room, and a regular schedule of daily dialysis exchanges, blood pressure measurements, and symptoms checklists to go through. Right now I feel like I’m living in semi-controlled chaos.
Now, anyone who knows me knows that I have a driving need to be in control of my life. My mom tells a hilarious, and true, story of the first time she held me in her arms. She says that I looked up at her like I was the mother and she was the child, and I expected her to obey. Not much has changed since that day. Except that at various intervals throughout my life since my senior year of high school, my life spirals completely out of my control, and I have to deal with it.
Our reorganized bedroom, with my dialysis machine next to the bed.
I finished dialysis training last week (they make me train every time because making sure everything is sterile can be literally vital), and I am finally using my dialysis machine, or cycler, every night now. I’m also on some strong doses of epo and iron to combat my anemia, so I’m feeling better. In addition, we had to rearrange our bedroom to fit in all the boxes containing my dialysis supplies, and, surprisingly, we actually love the way everything looks now!
My dialysis machine. Forgive our geekiness, but we call him R2PD. I mean, if you’re going to have a droid in your house, you must name him after Star Wars, right? (Sorry as well for the blurriness: shaky hands.)
All of that is on the plus side. In the negative column are some other aspects of life with dialysis. I have to eat so much meat, every day, for every meal. Before all you carnivores out there pooh-pooh my wee little burden, let me tell you, I have seen big, masculine, steak-and-potatoes men on dialysis complain about how much meat they have to eat to keep their protein levels up. It’s a lot, and it’s hard for me. (I was a vegetarian for seven years before my first stint on dialysis.) I’m good at eating protein for most of the week, and then I have a day when I want to beat my latest chicken breast with a blunt instrument and bury it in the backyard. (I’m pretty sure no one would come looking for him.) What saves me in this situation is two-fold: 1.) I love to cook, and finding fantastic, new, meat-laden recipes can be enjoyable. 2.) Sushi. I never get tired of that particular protein. There are also other aspects that are not so fun (my stomach isn’t as flat anymore, and my clothes don’t fit as well; I have to eat Tums before every meal; every activity has to be shoehorned into my dialysis schedule; etc., etc.), but I don’t need to go into all of that now.
Thus, my comment on how very full my life is. It’s not just the physical aspects of my days that have expanded, though; my life also feels full of gratitude and contentment. The last time I wrote I was at a low point: I had been stuck in my bed and in pain for weeks, and I was having a hard time seeing the positive. My post was sufficiently negative, in fact, to warrant an emergency phone call from my mom to check on me. (You can tell it’s an emergency call because she phones Kohl rather than me, in order to make sure she gets the real dirt on how I’m feeling. That woman constantly surprises me with her insights into my character.) Since that post, as I healed and quit feeling sorry for myself, and as my anemia and its resultant weakness were dealt with, I started seeing all the sun-dappled beauty surrounding me again. It is summer in the Avenues of Salt Lake City, and that is a beautiful situation in which to find oneself. I’m well enough to go on walks again, we have wonderful friends with whom we spend time, the farmer’s market is bustling, and everything around me is growing and green.
Moreover, I am slowly exerting control over those things which I can. I can’t control the fact that I have to make time for dialysis, but I can utilize my free time as productively as possible, and you can be sure I am using the time while on my machine for my own projects. My diet has been taken out of my hands, but what I do with my food regimen is creative and healthy, and, after talking with other peritoneal dialysis patients, I’m contemplating coming up with a cookbook of my recipes. We may have had to put adoption on hold again, but I am using this time to make sure our house, affairs, and finances are as perfect as possible, so that we are completely ready to welcome the little person who is supposed to make another link in our family circle as soon as we can. I may not be able to control many, or most, aspects of my life right now, but I will be fine, because I am stronger than my disease. In all honesty, I should probably say: I am stronger because of my disease, and that strength, I suppose, is worth the loss of a little control.
I’m getting a little restless. I hate the whole recuperation stage of laying around all the time, painful movement, painkiller-clouded thoughts, and isolation. There is good news: they were able to place the catheter! The surgery did end up being more invasive than they had planned, and they had to make an incision to find where they could put the catheter, so the recuperation is taking a little longer than we had hoped. However, the catheter is in there and the flush they did worked, so right now it looks like peritoneal dialysis will work. Thank you, everyone, for your thoughts and prayers as we went into this surgery. They were felt.
This is right after the surgery. Thus, the glassy eyes.
Now I just have the sluggish process of recovery to navigate. Unfortunately, painkillers give me anxiety and hallucinations, so I generally start weaning myself off of them the day after a surgery. It means a little more pain, but also fewer dreams about threatening people standing over me and whispering. I’m also walking around all the time. It sounds counterintuitive, but the more I get up and move, the better I feel. I can’t do it for long, in fact, I can’t even sit up for long, but I try to walk every chance I get. However, the worst part of recuperation is the restlessness and depression. It’s hard to be in one place for weeks, and my mind starts to rail against the situations that have brought me here. I know it’s not rational, but I get angry and I start pacing like a wild animal in a cage. Except I’m a little weakling right now, so I mentally pace inside of the bone cage of my brain, and that is even worse.
In addition, the entire world, my entire world, is having babies. You are probably thinking that I am exaggerating, but in my neighborhood ¾ of the women my age are pregnant or just had their babies. In fact, of the maybe six friends with whom I’m closest here, four are pregnant, along with my sister-in-law. Two other sisters-in-law just had a baby or just received confirmation of the baby she is adopting. None of this makes me bitter or angry; that’s not how it works. I am thrilled both for my friends and family and for the joy I will get in having so many more little people in my life, but, as I sit in my bed, constantly shifting position to try to ease the discomfort and trying not to feel depressed, a small part of my mind keeps asking,
“When is it my turn?”
Then comes the real terror:
“What if I don’t get a turn?”
We were working through the steps to adopt when I was told my kidney was failing. Having to stop that process to focus on my own health was the worst part by far of getting sick again. Not being able to have a family is the most tender, the most raw pain I have ever felt, and as I struggle to rise above the physical and emotional lows I’ve hit at the moment, it is uppermost on my mind. I don’t talk about my infertility much, and I’m not putting it up here because I want sympathy or even advice, because it is far too aching a wound to tolerate much of that, but I want this blog to be honest and real, and I feel completely caught up in the pain of this aspect of my shadows right now. This blog can’t always be about overcoming adversity, it’s also about living through it, and I guess I’m just not through this part of it yet.
I’m sorry to lay all of this on you; I try to be positive most of the time. Maybe once I actually start dialysis I will start feeling stronger and better able to deal with my burdens.