Therapy

I know I let you down last week. For the first time since I started this blog, I wasn’t able to stick to my one post a week goal. Ok, that actually sounds arrogant to me. Let’s rephrase it: I let myself down. Believe me, I’m completely aware that this whole blog thing is much more about me dealing with my shadows and letting long unused talents see the light than it is about bringing hope to the hearts of the masses. However, if you did miss me…I’m sorry.

The truth is, the last month has been much rougher for Kohl and me than I had thought it would be. The previous year, as my health slowly faded, I felt like every day was a magical gift, and I was grateful. However, I was also a little arrogant; I kept thinking, I know how to deal with this kidney disease, and though I’m not looking forward to it, I can be stronger than it. Then we were hit by a succession of emotional trials, and sometimes I feel like I’m breaking.

Kohl is still grieving for his dad, and I don’t always know how to comfort him. The other day my heart broke when I heard him sobbing in his office, only to discover that he was actually gasping for breath while he laughed hysterically at a YouTube clip of someone getting hit in the head by a ball. Other times I find him with tears in his eyes as one of his dad’s favorite songs comes up on his iTunes playlist, or worrying that he’s not close enough geographically to help his family.

For me, besides the constant yo-yo of “I feel pretty good today…oh, wait, I’m starting to feel cruddy…no, no, that must have been a fluke; I’m feeling ok…oh, man, I feel terrible,” I’ve also been dealing with the fallout from an emotional conflict with loved ones that has left me struggling with a lot of anger and bitterness, and I’m not sure how to adequately, or healthily, cope. I thought I had learned how to deal with these emotions better than I have, but apparently I still have a long way to go. To top it all off, I got a call last night that my grandpa had had a heart attack (they think), his kidneys have shut down, and he’s in the hospital. Although it sounds like he’s doing better today, there are still a lot of unknowns, and I’m feeling a little out of control.

I’m not sure why all of this is happening at once. Why is it that struggles so often come together? What is it that we need to learn from the combination of grief, fear, emotional distress, and helplessness? If it’s that we sometimes are unable to cope with situations all on our own, that we need help and love, believe me, I am feeling it. I think there is something else, though. I feel like there is some profound truth just beyond my vision that I am supposed to be in the process of learning right now. I hope that I’m discerning enough to grasp it soon, because I do not deal well with emotional pain.

In the meantime, I am trying to be calm and allow myself to feel what I need to feel to work through the anger, fears, and stress. I’m turning again to being creative to help soothe my frazzles. I really love just sitting in silence and working with my hands; I love music, and I like watching things as I work normally, but lately the silence has allowed me to really think about where I’m at and what I truly want while my hands are creating structure and beauty out of tangled threads. In fact, the other day I sat down with some yarn I’d been crushing on for months and created my own pattern for a simple cowl. I spent a few hours on it, and afterwards I felt amazing.  My problems weren’t miraculously solved, but I felt more able to deal with them. Plus, I can never have too many warm things to wear up here on the mountain; this place is cold.

Below is the pattern I created as therapy this weekend, for those who are interested. Please don’t sell the pattern or the finished piece without my permission. (Not that I think any of you would, but apparently this is important to put up for legal reasons.) Here’s hoping that it might help someone else with their frazzles too. If you have questions, let me know!

WOODLAND TWEED COWL

Measurements: 7 ½” (19 cm) by 52” (32 cm)

Materials:

Lion Brand Tweed Stripes yarn (100% Acrylic, 3 oz/85g/144 yd/132m) or other bulky (weight category 5) yarn: 2 skeins Woodlands

US K-10.5 (6.5 mm) crochet hook, or size to obtain gauge

Gauge: gauge is not critical for this project

Foundation Row: Ch 132. Being careful not to twist chain, connect circle with a slip stitch in first chain.

Row 1: Ch 2, hdc in same chain. Hdc across.

Row 2: Ch 2, (FPhdc around hdc, BPhdc around hdc) across.

Row 3: Rep Row 2.

Row 4: Ch 1, sc across.

Row 5: Rep Row 4

Row 6: Ch 3, *sk next sc, 1 dc in each of next 3dc, 1 dc in skipped sc, repeat from *. Join to top of turning ch with sl st.

Row 7: Ch 1, turn. Sc across.

Row 8: Ch 2, hdc across.

Row 9: Ch 1, turn. Sc across.

Rows 10-13: Rep Rows 6-9.¹

Rows 14-15: Rep Rows 6 and 7.

Row 16: Ch. 1, turn. Sc across.

Rows 17-19: Rep Rows 1-3.

¹ The current pattern will give you three repeats of the central pattern; if you want to make the cowl wider, repeat rows 6-9 once or twice more. If you do choose to make it bigger, you may need another skein of yarn.

The Bright Side

The last couple of months have been challenging for me, and I’m afraid that this blog has been a little gloomy in consequence. The truth is, my life is pretty fantastic. I live in an apartment in a beautiful Victorian mansion in a historic part of Salt Lake City with my husband, who happens to be an extremely talented filmmaker capable of making me laugh daily, and my chinchilla. I’m fairly weird, and yet I’ve been able to make good friends who can either look past the oddness or share some of it. I am surrounded by people who care enough about me to consistently check up on me and want to take care of me, though I’m afraid sometimes my desire for self-sufficiency and stubbornness deny them the opportunity.

Basically, what I’m trying to say is that I’m sorry those of you who read regularly have been subjected to so much doom and gloom lately. I’m actually a very optimistic person, but I think that the stress and sadness of the last few months has been reflected in the emotions I’ve expressed here. In contrast, I want this post to focus on all the bright, sunshiney spots in my life, so I have listed some of them below.

-I have fourteen nieces and nephews whom I love with all my heart. I can’t resist making things for them, and I could talk about them all day. (Although I don’t, or at least I try not to; I’m pretty sure etiquette demands that I refrain from monopolizing the conversation with anecdotes about the precocious and adorable offspring of my siblings and in-laws. If you’re interested, though…we should have a chat.) One of the things that makes me happiest is writing letters to those little joybugs. I started it when I moved out of state and didn’t get to see them as much, and it has been more fun than I ever imagined. They LOVE getting mail.

-Some of my friends and I started a Craft Club. We get together once or twice a month, and everyone brings something they’re working on (or not; sometimes people just want to get in on the conversation), and we talk and craft. It is a huge stress reliever. In fact, the first time we did it, I ended up bawling like a baby as I talked about some of the stuff going on with my disease, and afterwards I felt so much better. Luckily, I’ve never repeated that performance, but it’s so nice to know that I have a place where I can be like that and people will still sit near me the next time they see me. Also, one of these times I’m going to have someone teach me to knit.

-While in Arizona for my father-in-law’s funeral, we were able to see some of our best friends. Just seeing their faces at the viewing and funeral made everything easier. Again, when we came back to Utah, we were able to see many of our best friends here, and it eased my heartache. I have genuine love for these people, and there is not much I wouldn’t do for them. To have them there when I needed them was a blessing I didn’t even realize I needed.

-I find constant delight in creating things. One of the premiere joys in my life is to sit in a beautiful place, preferably outdoors, and work with my hands. I just finished a sweater for one of my nieces, and I have been in love with it for the last 24 hours. I couldn’t stop picking it up and admiring the colors. I hope it doesn’t sound like I’m bragging; I adored the colors when they were just hanks of yarn also. I just mailed it off this morning, and I can’t wait to see a picture of my niece in it. Making and giving gifts provides some of the happiest moments in my life.

A sweater for Autumn

-My husband, Kohl, is my very best friend, and he has been since four years before we were married. He was there the first time my kidneys failed as my friend, and he was with me the second time as my husband and primary caregiver. He is patient, gentle, irreverent, witty, highly intelligent, startlingly creative, and hilarious, and when he doesn’t know anyone is watching, he is an amazing dancer. I don’t know who I would be if I didn’t have him in my life.

-Finally, after all the fear and worry about my doctor’s appointment, it turns out my numbers are still surprisingly good (for someone with only 9% kidney function, at least). My doctor said that I don’t have to start dialysis right away; she’s giving me four more weeks, and then I’ll get more bloodwork done. Considering that my previous kidneys have failed in a matter of weeks after the earlier returns of my disease, the fact that this failure has taken more than a year is miraculous. I am so grateful for this extra year of health that I’ve been given. I feel like my senses are sharpened, and I have been able to notice every delightful thing with grateful eyes. The doctor also told me that I shouldn’t have to go on hemodialysis at all! That was a huge pile of dread that slid right off my shoulders, and I’m feeling a little more able to breathe. The only gray lining to this silver cloud is that I’m badly anemic, to the point that I may have to start getting bi-weekly shots of Epo to strengthen my blood. Unfortunately, these cost $2500 a pop, so to be able to afford them I might have to start dialysis anyway, in order to get on Medicare.

Regardless of the hurdles still ahead, I’m feeling happy and relieved that things turned out so much better than I had hoped. It’s a lesson to me not to let my fears control my outlook. With a life as full of delight and joy and sunshine as mine is, it’s a pity to focus on the gloom.

A Few Thoughts Going In

I’m back in Salt Lake, sitting in my favorite chair with my rainbow hued throw behind me and the radiator throwing off gentle heat, and I’m letting all the worries, hopes, and fears run through and over me like water through a sieve. The last couple weeks have been trying and traumatic, and I feel completely unprepared for my doctor’s appointment on Monday.

One of my worries is that I have too much scar tissue to do peritoneal dialysis, which means I would have to do hemodialysis until I get a kidney transplant. Peritoneal, or PD, is a type of dialysis in which a catheter is placed in my abdomen, and I fill up the cavity around my organs with dialysis solution. The solution then pulls the excess water and toxins out of my body through osmosis. I would get a machine that would run the exchanges at night while I slept. Hemodialysis entails the patient visiting a dialysis clinic three times a week where a machine cycles blood out of the body about a cup at a time, cleans it, and restores it. I’m sure everyone has different experiences, but for me hemodialysis is extremely rough, and I feel awful all the time. I tend to tolerate PD much better. Unfortunately, because I have had so many surgeries on my abdomen, the scar tissue may be too extensive to allow the PD catheter to be placed.

I am hoping that I might be able to forego the hemodialysis all together. Usually I go on it for just a couple of months while the PD catheter is healing. If my numbers are good enough, maybe my doctor will let me skip that step and just wait for the catheter to heal. I have no idea how realistic this suggestion is, but it makes me happy just to imagine the possibility that this particular bout with IGA might take place without ever having to get the hemo catheter put in my shoulder.

I think my greatest fear is that I’m not going to be able to be who I need to be to get through this successfully. I feel so inadequate. I wanted my house to be completely organized before I started this, so that my OCD wouldn’t torture me so much, but I don’t see how it’s going to happen. I wanted to be able to finish up all the projects hanging over my head so that I could just relax and concentrate on getting well, but I’m so tired. I want to be who everyone thinks I am and wants me to be, but I feel so overwhelmed sometimes. Lately I especially feel like I’ve been letting people down because I’ve been trying so hard to make everyone happy. I’m also cranky, irritable, weak, and hyper-emotional. I know that I am a strong woman, but sometimes I just want to crawl into a corner and weep. I want to cry because at times I feel so lonely, isolated by my illness, by the way it feels when your body is dying by degrees. I want to cry out of sheer exhaustion and weakness. I want to cry for the dreams I’ve had to put off, again, especially that little baby about whom it is becoming almost too painful to dream anymore.

There are other things worrying me, and other things I’m hoping for, but as I let myself sit and be free to think about the worst and best case scenarios, the above is what comes to me most strongly. At the end of all this stream of consciousness thought-flow, like the sieve, I’m feeling empty and yet still wet through. I’m not sure if these kinds of ponderings are really helpful or not, but I feel better for having looked my fears and hopes in the face, instead of letting them lurk half-seen at the corners of my mind. Once I am aware of what I truly want and what I honestly dread, I can come to terms with how I will feel if they come to pass or not. Regardless, I feel more at peace with what I want to talk to my doctor about on Monday, and what I will work harder on trying to accomplish in these last few days before starting dialysis.

Realization and Grieving

I have been struggling to know what to write about this week; so much has happened that I keep finding myself unsure of how to approach such a tender subject.

Last Wednesday, Kohl’s dad passed away unexpectedly. I found myself suddenly switching roles with Kohl, as I tried to take care of him while he navigated territory that I knew nothing about. I had no idea what I could say or do that might help him, so I tried to say as little as possible and just be there with him and for him as much as I could. Now, a week after the funeral, I’m finding myself with several disparate thoughts all jostling around in my head, and I’ve decided to just let them fall out onto the page and hope someone finds them helpful.

Firstly, I need to express my gratitude for Kohl’s father. He was a genial, warm hearted man who loved music, technology, and sweets. He also struggled with health problems for most of his life. I think part of the reason Kohl is so patient with me as I go through my own struggles, is because he grew up seeing his mom take care of his dad. That patience and knowledge is only a small portion of the legacy that David passed to his children, but it has affected my life immensely.

Secondly, I have been putting a lot of thought into how we all experience such different trials. As I sit helplessly among my in-laws, wishing I could comfort them, but unsure of what to say or do, I have realized that what I have experienced has given me the ability to recognize and feel true compassion for others’ suffering, but it has not provided me with a true understanding of their pain. We are all surrounded by people with vastly different hardships than our own, and I have two very strong beliefs about that.

The first is that no one has it any tougher than anyone else, not really. We are fundamentally unable to feel exactly what anyone else feels, so we have no way to know how hard any one trial is for another person. What would be difficult for one person may not be very hard for another to deal with; likewise, what may be a simple hurdle for one individual may feel completely insurmountable to me. For instance, as lame as having a kidney disease is, and as frustrated as I get sometimes, it is a physical ailment, and I am not afraid of physical problems. My will has always been stronger than my pain. The most difficult thing I deal with, my secret trauma that rips me into shreds inside, is my inability to have children. It’s not as obvious as my kidney problems; in fact, no one meeting me would even know that it is an issue, but the aching pain of that wound makes my organ failure feel like a small thorn in my foot. One of my favorite sayings is, “Be kinder than necessary; everyone you meet is fighting some kind of battle.” We should never make the mistake of thinking we are better or worse off than someone else; life is going to test and teach all of us, and we don’t have the right or the responsibility to compare hardships.

The second thing I believe strongly about trials is that there is recompense attached to suffering, and I am not only talking about the blessings that various beliefs promise to those who are patient. There are blessings we gain in this life that are the direct results of what we go through. Our burdens give us the ability to feel sympathy, and sometimes even empathy, for others who hurt. As we struggle, we begin to see through different eyes. Sorrow provides wisdom, grief teaches compassion, and pain clarifies how to be truly grateful. This last week of heartache, I realized again that although I can’t always understand what the person next to me is feeling, I have learned enough to know that offering my unconditional support is often sufficient. I am here for whenever Kohl needs me, and because I am more familiar with sorrow, grief, and pain than I was, I will be able to recognize when that is. This is one of the ways that shadow enriches the light, and I am grateful for the eyes I have to see that.

I’m still feeling jumbled by this experience, and I know there are lessons I haven’t sifted out yet, but I hope I’ve made some sense. What are your thoughts about grief or trials? I would like to know how other people deal with helping loved ones through painful times. Does everyone feel as inadequate as I do?

Shadowlace, Crochet-Style

One of the reasons I love crochet is that it looks so handmade, whether it’s a solid fabric, like the Mohawk hat, or something lacy. It probably doesn’t surprise you when I say that I particularly love the lacy look; I mean, it’s basically shadowlace that I’ve created. Anyway, here are a few of the projects I am working on right now or have recently finished. I’ve also made something for a lot of you, so if you want your project highlighted on here, send me a pic, and I’ll post it.

The Mohawk hat. I’m also making one in blues and one in greens for the brothers of the little boy who is getting this.

This is a detail from the afghan I’m making for our bed. It’s hard to tell (especially with my particular brand of fuzzy photography) but it’s made in a super bulky yarn, and the pattern is a checkerboard of plain squares and squares with bobbles (or bumps).

Ripple scarf

Beanie

I made one of these scarves for myself, and one of the beanies for Kohl. We liked them so much, and they were so easy, that I ended up making a bunch for our friends up here for Christmas, all in different colors.

This is one of Kohl’s all-time favorite things I’ve ever made. It’s a simple throw that we have in our living room for cold nights, and it’s made with a bunch of leftover scraps from other projects.

This is one of the easiest and quickest things to make, and it’s one of my go-to gifts for baby showers. My aunt taught me to make them. All you do is crochet a little ruffle around the edge of the sock, throwing on a bead every once in a while, so you end up with a beaded ruffle. The color combinations are endless; I like to find out what my nieces are wearing for Easter Sunday and make socks to match.

These are some ponchos I made for all of my nieces. The funnest part was picking out a colorway that each of them would love. The pattern is super simple, but every little girl seems to love it. (Except, apparently, Brooke in the middle there. I’m just going to tell myself she’s hungry.)

I don’t know if this satisfied those of you who wanted to see some of my projects, but it was super fun for me. If anyone wants the patterns I’ll scrounge them up (or write them down for the ones I made up). I’ll keep you posted as I finish new things.

P.S. I wanted to thank everyone for their very kind responses to my last posts. I am still terrified to throw all of this stuff out there, but I’m grateful for your words of encouragement.

Solace

This week has been hard.  I have spent basically the entire week curled up in bed trying to decide which hurt more: my stomach or my head. My head ended up winning. Hurray.

This is particularly frightening, because last time I was on dialysis one of the complications was a bout of Pseudotumor Cerebri. That’s Latin for spinal fluid collecting on the optic nerve, building in pressure and causing shatteringly painful headaches and blindness. I was blind for a couple of months before I had a surgery that relieved the pressure and restored most of my sight (although it is still way too easy to sneak up on me from the left).

This was the fear that kept banging against my skull with every painful throb of my painfully throbbing headache this week. Combined with my OCD, which tends to get far worse when my kidneys stop regulating my hormones, it transformed me into a gibbering basket case.

Now I’m going to say something that may surprise you based on the previous three paragraphs, which strike me as exceedingly whiny. I’m not writing this post to complain. I hate complaining; it makes me feel weak and victimized. In fact, letting the above details get out to anyone besides Kohl riles up every instinct for privacy and self-preservation that genetics and breeding have given me. No, I wrote this post to tell you about something marvelous.

There are two things that brought me back to normalcy. One was Kohl patiently holding me as I gibbered, and telling me over and over that it was probably just high blood pressure rather than a return of the Pseudotumor. (That may not sound comforting, but, believe me, it’s preferable.) The second thing that soothed my jangled nerves was crocheting.

For those of you whose interest in this post just plummeted, let me explain. There is a power in manually creating something. There is a magic in watching something you dreamed of take shape in reality. There is a beauty in letting the textures and colors play over your senses like a warm breath. There is a relief in having something in my life which I can control.

I’m working on a Mohawk hat for a little boy right now, along with a luscious, thick, cream colored afghan to go on our bed. As I worked on them this week, as I let the yarn rub against my fingers and watched my projects come to life row by row, I felt so much peace. In my life right now, inside my own body, there are processes of destruction taking place. This often leaves me feeling broken and bereft. The process of creation that I enact when I crochet balances me. I am powerful and magical and beautiful when I am crocheting.

May I suggest, then, to those of you facing your own personal darknesses, that you find something that fills you up, some part of your world that you can create. I have found it most effective when it is something I have to use my actual hands to do, like cooking or gardening. For you, it may be working on cars, or rebinding books, or painting furniture. It might be building model planes, braiding someone’s hair, or organizing a closet. When you find what it is, use it wisely as an outlet and a refuge, but not as an escape. There is solace in creation, and it is one of the most positive things you can do for yourself.

It really helps with gibbering, too.

Getting Started

It’s time to begin. I’ve put it off, but I can’t hold out any longer. This is where it all starts.

I created this blog in November, and I had great plans to start posting about what I was feeling as I looked ahead to the time when I would start dialysis for the third time. I even began writing a post, but I stopped in the middle of it and moved on to other projects. I kept telling myself, “It’s almost Christmas, and I have so much to do!” or “I think, all things considered, it’s a better use of my time to take a nap,” or even, “What on earth do people want with another blog to read?!”

On New Year’s Eve I finally realized the truth. We were down in Arizona, visiting family, and everyone was enjoying themselves, shouting out Happy New Year, setting off fireworks, excited for 2012, except me. All I could see ahead of me was the looming gray wall of another bout of dialysis.

For those of you who don’t know, dialysis is a process in which machines clean the blood of someone whose kidneys can’t do the job. It isn’t fun. In fact, it is often soul crushing. This will be my third time on dialysis. My original kidneys failed when I was a senior in high school. After three years of dialysis, I received a cadaver transplant. Five years later, my disease attacked my kidneys again, and I returned to dialysis. This time I was able to get a transplant only a year afterwards, thanks to my wonderful brother-in-law, Mitchell, who donated a kidney to me. Five years after that, guess who came knocking on my metaphysical door? That’s right: IGA Nephropathy and his good pal, Dialysis.

This is what I was facing on New Year’s Eve. My doctor had allowed me to put off the inevitable until after the holidays, but I knew that as soon as I returned to Salt Lake, the process would begin. I was so full of dread that night that I sat inside and cried on Kohl’s shoulder while everyone else was shooting off fireworks, and I LOVE fireworks. I hadn’t wanted to think about it before; I hadn’t wanted to write about it; I hadn’t wanted to accept that this shadow was back in my life.

Here’s the thing though: shadow and light together create beauty. When I was a freshman in college, part of my routine was a dialysis exchange in the middle of the day. I would sit in my parents’ living room and look out their big picture window, luxuriating in the sun like a cat, because dialysis makes me so cold. My mom had planted a beautiful tree in the courtyard, with slender branches covered in tiny, dancing leaves, and I was fascinated by the patterns the tree would make on the sidewalk beneath it. I used to watch it for the entire hour-long process, and eventually I started calling the shadowy, intricate patterns on the cement shadowlace.

My life has become synonymous with, and informed by, shadowlace. I am surrounded by beauty, and love, and delight, and I have learned to recognize these things clearly because of the dark patches. Whoever I am, and whatever I am becoming, it is happening because I have been in the shadows, and I am ready to write about it now.

I am going to plug writing a blog post into my weekly schedule, so, for those who are interested, I hope I have enough of interest to say. Kohl told me that I need to let more people in, to use this experience as a way to reach out and help others, so here come the shadow and the light of my life.