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“Brim with Joy”

In a little under a week I’m going in for surgery, so for these last few days Kohl and I made a list of everything we wanted or needed to get done, and we’ve been working on checking them all off. Unfortunately I sleep for half of every day and Kohl is constantly busy with all the various film projects with which he’s involved, but we’re still trying.

Some of the things we have on the list are getting our house totally clean, taking family pictures, putting my herb garden in order, and going swimming (I love swimming, but I’m not allowed to go once I get my catheter placed, so it’s my last chance for a while). We’re doing pretty well on the list, almost entirely because of the efforts of Kohl and others. Yesterday, I was feeling pretty terrible, and while I slept Kohl picked up, straightened, washed and vacuumed every room in our house. I feel a lot of guilt when he does that, because I know that most of the clutter is mine. Kohl despairs over what he calls my “piles” and it’s true: by each of my habitual resting places, like my chair in the living room or my side of the bed, I keep a stash of the books I’m reading, the projects on which I’m working, or the mail I need to go through. Poor boy, he hates clutter. Thus, my guilt when he has to deal with mine. He worked so hard, too, not to berate me for it. I love that man; he is so committed to being the best version of himself, and he succeeds so well. I’ve never met anyone so talented at setting personal goals and achieving them, even when his wife is too ill to do her share.

We also had a wonderful experience with family pictures. I’ve been trying for a few months to set up some sort of photo shoot with one of our many cinematographer friends, but the thing about those guys is that they’re always busy shooting commercials or movies. Trying to fit my sporadic bouts of health with that type of schedule just never worked out. I had given up on the idea, and I was thoroughly disappointed. We haven’t gotten actual family pictures, just Kohl and me, since we were married 11 years ago, and taking them while I am on dialysis is not really an option. Dialysis changes the way I look drastically. It’s as though my entire body knows that something unnatural is going on, and the actual muscles shift in revolt. That’s not it, of course; I’m sure that it is just a combination of the extra fluid in my body and the lack of energy and nutrients that make me lose color (you didn’t think it was possible for me to have any less color, did you?) and seem to change the shape of my body and face. Regardless, I thought getting pictures was something else I was going to have to set aside until I got well again.

Then, last week, a photographer friend, whom we had really only met once in person before, contacted me and offered us a photo session out of the blue. She had read this blog and felt the urge to do something nice for us. I explained that we would have to do the shoot in the next few days, since my surgery was so close, and she immediately scheduled a time for us. We spent a couple of hours shooting all around my beautiful neighborhood, and every picture I saw was stunning. (I strongly suggest you check out Briana Marie Photos on Facebook and online; she has some wonderful work.) I’m so excited to see the rest of them, and I am a little overwhelmed by the generosity of this sweet woman.

This is one of my favorite pics that Briana took.

In fact, I feel blessed to have so many people love and care for us. I have a good friend who called me up a couple of months ago and told me that she was going to be bringing us dinner every Wednesday, so I should just start planning on it. (Kohl got a huge kick out of that. “Finally; someone who knows how to talk to you,” he said. He thinks I am sometimes too focused on being independent.) I have other friends who will randomly call me up and tell me they made extra food, can they bring it by; or they’re on their way to the store, is there something I need; or they have some free time, would I like to get together and crochet? Some of my friends even set up a party so that I can go swimming the day before my surgery! I have family members, good friends, and people I barely know all sincerely offering to be a donor for me, and I have a couple very special people who have told me they are willing to be a surrogate so that Kohl and I can have the baby we’ve been wanting so long.

I am overwhelmingly blessed in and by the people I know, and I am constantly astounded at the amount of love that we have received from so many. As I’m trying to get my life in order this last week, I am feeling remarkably calm and happy. All I find myself thinking about is how lucky and grateful I am for my beautiful life. Have you heard that phrase “brim with joy”? That is how my heart feels right now. I have been so well taken care of, and I know that, regardless of the outcome of this surgery, that will continue to be the case. To all those who have shown me such unconditional love, thank you. To those who have served me, or prayed for me, or sent some of your thoughts my way, I am so grateful to know people like you.

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“You Can’t Always Get What You Want”

But if you try, sometimes…

To those who have sent me messages or been worried about me because I haven’t posted for a while, I’m sorry. I was working on Kohl’s film, which he shot this month (http://www.facebook.com/OrcWars), and it devoured our lives for weeks. I actually did much better on the shoot than I thought I would; it just shows that when something needs to get done, we can find a way to do it, in spite of health or energy. I ended up being fully capable of running around and working all day. Well, maybe not fully capable, but for the most part, I got the job done. Once I get some of the pictures from the shoot, I’ll write a post about it, but today I have other things I’m thinking about.

I met with my surgeon, and a lot of my fears about being able to do peritoneal dialysis have come rushing back. He had some concerns about not only placing the catheter, but also about whether it would work after so many surgeries and so much scar tissue. There’s no real way to tell until they try to place it, so the surgery is going ahead on June 12, but in my mind it has gone from being a fairly routine procedure to one that will decide the course of my health for the foreseeable future. I’m not sure I’m up to being on hemodialysis full time. The last time I did it, my body told me it hated me every other day and my eyes quit working. I wasn’t well enough to do more than move from one supine position to another, and the only things that even tasted good to me were the fumes from the saline solution they would put in my shoulder catheter. It wasn’t much of a life.

These renewed fears have fed into my recent behavior, which hasn’t made Kohl too happy. The way I deal with hurtful things is to shut down and just think them through. The bigger the problem, the quieter I get and the longer I stay silent. The end of Kohl’s film was a signal to me that it was time for me to let go of this magical health hiatus I’ve been living and actually commit to the dialysis process. Every part of my thinking soul is rebelling against the simple fact that it is time. My mind is scrambling like a rodent in a plastic bucket, trying desperately to find a way out, but my body is telling me, with the solidity of stone, that it’s over, and I’m here. I’m at the point where I have to reconcile what is with the ghost of what I wanted to be, and it’s taking me a long time to let go.

I want to be able to walk up my stairs without taking a ten minute rest afterwards. I want to be able to go to sleep at night without making sure my room is sterile so that I can hook up to a machine. I want to smell like the blend of Dove soap, Vaseline Intensive Care Lotion, and Burt’s Bees with my skin instead of chemicals. I want to go outside in the middle of a summer day without shivering. I want to eat French fries without worrying about which strength of dialysis solution I should use to remove the water they’ll make me retain. I want the energy to help Kohl with his projects. I want to be able to keep my house clean and organized. I want a baby. Good heavens, how I want a baby. I want my life, the one I have worked for years to build, the one that I keep having to give up while I wait for my body to be up to the challenge.

Right now, though, what I need is to accept what is happening. I need to let Kohl into my thoughts and allow him to support me. I need to focus on living with grace and strength, despite the very real anger and sorrow that I often feel. I need to refocus on the many others around me who can use my help. It’s too easy to become self-centered when going through difficulties. The fight for survival encourages selfishness, but I want to be the kind of person who thinks of herself last, and I have so far to go. I need to take every opportunity to make myself more loving, more in tune with others’ needs, more aware of how to be better. In that way, I think what I probably need most is this kidney disease. (I know you can’t hear my sigh of resignation through the computer, but it came right after that last sentence.)

I also need help. As I go into this surgery, would you keep me in your thoughts and prayers? I want so badly to be able to do peritoneal dialysis, so, if you would, could you bend your energies in that direction when you get a chance? I’ll let you know how it turns out.

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My Mantra

I received a call from my doctor today, and she told me that my anemia is doing a lot better (I have been pounding iron), but my kidney function has dropped to 6%. It wasn’t really a surprise; I’ve been so weak the last few weeks that I can barely get myself dressed in the morning. She suggested that the time has come to finally start the dialysis process. Unfortunately, the timing is bad. Kohl starts filming a movie May 1. Happily, they aren’t staying on location, so he’ll be coming home every night. With my doctor’s consent, our current plan is for me to start dialysis when shooting is done. (Although we might plan a small vacation right afterwards as a last hurrah.) After a year and a half of holding it off, I’m starting dialysis for the third time.

I’m not really sure how I feel about this news. I don’t want to start dialysis; I dread it. My mind keeps scrambling to find a way out of it, but the only way forward is to move through it. On the other hand, I can feel my body slowly giving out, like a ship drifting through the cold emptiness of space, in which all the life support systems are shutting down one by one. It’s a very surreal feeling. I can feel the tethers holding me to my body, to my life, getting more tenuous. Sometimes it seems like it would be so easy to let go and just float away, but I was born a stubborn fighter. (Seriously, ask my mom; she has a lot of stories.) Sometimes all I need is to remind myself that there are lessons I need to learn to become the person I’m trying to be; sometimes I feel lost in the loneliness of being the only soldier able to fight this particular battle with my own body while everyone else seems to be at peace with theirs.

I have a couple of mantras that I repeat to myself all the time. They remind me of who I am and who I want to be. The first is, “My will is stronger than my pain.” This is true, although sometimes I have to remind myself of that. Stubbornness can be a fault when applied to the wrong situations, and I have worked on that for years, but when I am dealing with my disease, there is a huge amount of power in being stubborn. I refuse to let my disease conquer any part of my life. It is something that I have to deal with every day for the rest of my life, but it bows to my will and not the other way around. There are obviously concessions I have to make, but I will not be defined by a disease.

The second mantra is, “Happiness is a choice and strength is a habit.” I know that it isn’t always possible to just say, “I choose to be happy,” and have my sadness disappear, but I have also realized that I have the choice to view my life through a positive or negative lens. Every day contains delight; I just need the eyes to see it. Strength is the same way: the more that I get up every day and accomplish something, regardless of my physical state, or refuse to allow self-pity to bog me down, the easier it is to continue doing so.

I do dread dialysis. I hate how foreign it makes my body feel. I fear the constant threat of infection. I am irritated by the complications it adds to my schedule and the infringement on my social life. I get tired of all the supplies I have to store and the constant regulation, and I am terrified of those nights that inevitably come when all the world sleeps while I am alone with my suffering. I know, though, that it is time. In all honesty, it was probably time a few months ago. I am so weak that even the simplest of tasks are difficult, and I have been having a hard time breathing. In some ways, it will be a relief to just get started; at least the waiting will be over. In regards to my fears, well…

My will is stronger than my pain.

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“Wild Nights are My Glory”

I walked home tonight from the church around the corner, and I was blown away by the beauty of the evening. The sky was a jumbled pile of different shades of gray and all the bare-branched trees were bending creakily first one way and then the other in the wind. The old Victorian houses in my neighborhood were the only solid things, and all I could hear was the roar of the wind and the skittering of dry leaves across the ground. There is something magnificent in a stormy night like this, and I was happy both to be walking in the midst of it and to have a warm destination waiting for me.

My stormy walk made me think of two things. The first was how much I have missed being outdoors. John Muir, a famous naturalist, said, “Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul.” That is certainly true for me. Since I was a child, I’ve gone outdoors when I’m hurt, angry, sad, pensive, or exultant. Happily, it’s getting warmer outside, so I can start spending more time out there.

The second thing I thought of was an analogy, because that’s how my brain works. (Seriously, ask me to explain an abstract concept to you sometime.) What I’m going through right now, what any of you are going through right now, is a type of stormy night. It’s darker than usual, the wind is whipping things around, making them seem unfamiliar and unsettling, and I’m not always sure I can make it home before I get soaked. You know what, though? Storms come. When we were in Arizona for my father-in-law’s funeral, my niece said something very similar. We were talking about grief, and teasing Madison a little about her frequent crying, and she said, very simply, in explanation, “Tears come.” Well, so do life’s storms. You can’t fight them, but you can ride them out.

I’ve always loved the book A Wrinkle in Time since reading it as a little girl, and in it one of the witches says, after coming into a house through a raging storm, “Wild nights are my glory.” My young, melodramatic heart leaped in agreement when I read that phrase, and I still feel it resonate with me when I walk through powerful winds and heavy, expectant air. I decided tonight that I can make my life-storm a glory also. There is a beauty in those who deal with difficulty with grace and strength, and there is something compelling in people who try to serve others while in the middle of their own struggles. I want to be that type of person. I may never like kidney failure as much as I love stormy nights, but there is a destination waiting for me at the end of this trial, and if I do it right, the person I’ll be when I get there will be a lot closer to the person I want to become.

I’m going to be getting more blood work done this next week, so hopefully my anemia is under control and I will be able to stay off dialysis a little longer. Wish me luck!

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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.

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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.

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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.

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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?

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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.

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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.