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?