Wednesday, August 31, 2011

Saying Good-bye

Grace and I went to a wake tonight. We said good-bye to a friend, the best man at my wedding, a father, son, brother, friend, soldier and a wonderful young man. His name was Olivier, and he was one of the sweetest people I know. I haven't written about his death, not because I haven't been thinking about him. On the contrary, I have thought about little else over the past few days. I haven't written about him because I don't know that I can do him justice, and I don't know how to write about the way he died. Olivier committed suicide.

Two weeks ago, I could have easily written posts, even a series of posts on suicide and suicide prevention.

Now, I am left without words.

Two weeks ago, I would have felt confident enough in my understanding about the issue of suicide to freely share my thoughts.

Now, I don't understand anything. I haven't a clue. I don't know why. I am humbled by the magnitude of pain; Olivier's, his family's, his friends', his fellow soldiers'. I hugged his mother, wept with the mother of his children, and all I could say is, "I can't imagine it, I can't imagine how hard this is for you." I held my daughter and cried with her as we looked at him in the casket, and all I could say is, "How can this be?"

I don't know.

All I do know is that Olivier had a brilliant smile. Grace says that he twinkled, and he did. It was like there was always the possibility that he had some bit of fun or mischief planned. He was a devoted father, and a brave soldier, a faithful son. He loved his family, and wore the title of "big brother" with pride and strength. He stood by my husband at our wedding in his uniform, and was a dashing, gentle, powerful, honorable tribute to his family and his country.

There will a time later for posts about issues and solutions.

Today is a time to remember Olivier Pilote.

He was a light, and the world is a little darker for his loss.

Spiders, anyone?

This was written as a Facebook note on Friday,August 26th.

Okay, I am going to admit it. I am feeling quite proud of myself. I posted last night on my Facebook profile that our porch was covered with spiders. The fat, hanging-around-the-porch-light-w/the-bugs type of spiders. At one point, I counted over 25 of them. Grace and I were heading out to put the recycling bin to the curb. We decided that it could wait another week. Several of the spiders had gotten inside (How?!) and with a fair bit of squealing and waving of rolled up newspapers, we managed to squish them all. But the outside ones...

I resolved to go out today to buy some heavy-duty spider killing spray. Forget organic. We've got no time for organic. I came home with the meanest can of bug spray I could find. Grace is heading to Vermont for the week-end with her dad, so I waited until they left and headed out to the porch with the spray, a broom and a series of deep breathing exercises designed to keep me from having a coronary collapse in the midst of my arachnacidic duties. And yes, I made up the word arachnacidic. Because I can. :)

Apparently, after a night of gorging on the bugs attracted to my yellow, bug-free porch light, spiders crawl into the nooks and crannies of my porch roof for a long day of slumber. Not surprisingly, when I began spraying the uber-lethal spider spray into every nook and cranny I could find, the little darlings woke up. And came out. In droves. Drunken, wobbly, fat, leggy droves. I shrieked and jumped backwards off of the porch. Stood in front of the porch, peering carefully up at the ceiling. Did a little shake-the spiders-off dance. I think I may even have moaned a bit. Wondered out loud how long it would take them to die. Then, I decided that I didn't have the time. With a broom, I started sweeping the swaying, dying spiders off of the ceiling, squishing them on the floor with the mop and stomping on the ones that managed, somehow, to stumble away.

I sprayed again. More came out. I squealed and jumped again. Muttered, mumbled, moaned, prayed, swatted countless imaginary spiders out of my hair, swept, squished and stomped.

Repeat as necessary.

This went on for three more sprays. I won't lie to you. As I write this, my skin is literally crawling. I brushed my hair into a sleek ponytail, so I know that there are no spiders in there. I have checked under my shirt repeatedly. I'm going by faith now.

And, dear reader, if you are the sort of person who likes to remind people like me that a fear of spiders is irrational, rest easy. I know that the fear of one spider is not rational. The fear of 25 fat, furry spiders falling from the porch roof onto my head, on the other hand, is completely rational. Spock-rational. Seriously. Don't ask me why. It just is.

My point is, despite my considerable fear, I managed to do what needed to be done. When I last peered outside, there were a few more spiders that had wandered out of their hiding spots, presumably to die. I don't hate spiders. In fact, I find them fascinating. Last night I spent several moments watching a spider navigate the miracle of his web to get to the small flying insects that he had managed to snare. I see the genius of creation, the intricate design, the wonder of nature. All this drama was taking place just outside my door window. One spider, building a web, catching bugs, living life, is interesting. Bringing 24 of his buddies along, and it becomes a nightmare. A nightmare that I, with a lot of prayer and faith, was able to walk through and deal with. I am grateful. And proud.

Not that it's over. To tell the truth, I have a feeling I just managed to kill the stupid ones. Or the impulsive ones, at least. I'm pretty sure that there are more tucked away, waiting for nightfall. If there is, I'm ready for them. I am armed to the teeth, locked and loaded.

If you live in Huntingdon,and you hear a commotion going on, it'll probably be me. Shrieking, jumping and mumbling my way through another spider battle. Don't grumble, though. Remember, every spider I kill here is a spider that won't show up on your doorstep looking for dessert!

You're welcome. :)

Tuesday, August 9, 2011

Living Out-Loud, or TMI?

I was lying in bed last night trying to keep the cat off my face and thinking about the instillation treatment I had yesterday, when I started to wonder if I am coming too close to the TMI line. (For those of you not familiar with web speak, TMI means too much information.) To be honest, that line has always been a bit blurry for me. I mean, I didn't really get into the details (oh man, the details!), and I make every effort to be respectful to the people in my life when they make appearances in my writing, but I also write about some pretty personal stuff.

At one point while prepping for the procedure yesterday, the CLSC nurse, Rachel, commented that she would be using a size 12 catheter rather than the size 16 that the doctor had prescribed. This prompted a conversation about how oblivious doctors can be to pain. Logically, for a patient w/IC pain, the smaller the catheter the better. Many patients even ask for pediatric catheters to be used. Doctors don't seem to take this kind of thing into consideration. This is when Rachel told me about her studies in pain. I commented that doctors don't equip patients for the effect that chronic pain will have on them, emotionally, mentally and physically. Rachel agreed, "That's because they don't know."

Her comment sums up a good part of why I write so openly about this stuff. I am not the kind of person that believes that knowledge is the solution to all problems. Selfishness, arrogance and hate can whip knowledge's behind if we let them. Yes, people do better when they know better, but only if they want to do better. I do believe that knowledge is a beginning, an opportunity, and I also believe that once we share knowledge with others, ignorance is no longer an excuse.

I have people tell me that they had bladder infections, and it wasn't a big deal. So what was I making such a big fuss about? Once I share that IC pain is more like the pain of bladder cancer than a bladder infection, if they still chose to see themselves as tougher than I am because they were able to handle a five day bout of an UTI better than I handle over ten years of IC, then they no longer have ignorance as an excuse. There is something darker, more insidious there. Something that tells me to back away.

That doesn't happen very often, though. I made a commitment a long time ago to live out-loud, to be open and honest about my life. I am too capable of wearing masks. If you ask me how I am in the grocery store, I will instinctively smile and say "Fine!" even if I can barely stand up straight in pain. Sometimes this is appropriate. Not everyone needs to hear everything.

Still, not only is there true strength that comes from the support of others when I am brave enough to be honest about what I am going through, but there is an understanding that not only am I not alone, but neither are my readers. You go through things, too. Big things. Scary things. Painful things. You need not be alone.

Another reason that I share about my life so openly is because I have given my life to God, and I believe that He wants to bring meaning and purpose to my pain. I don't believe that this life is all there is. I don't believe that this body is all there is to me. And I don't believe that my struggles are for nothing. Over and over and over God lifts me up and strengthens me in ways that are wildly wonderful and supernatural. I am not capable of working up even a semblance of the joy that He gives me. I spent most of my life before Christ in debilitating depressions. Now, when I really have something to be depressed about, I experience joy and wonderful moments of happiness on a daily basis. Yes, I feel sad. Yes, I mourn my losses and have moments of deep sorrow. But joy comes in the morning. When I joke about things, I am legitimately having fun with the silliness of life. I see the humor in many things. I mean really, aren't chickens the funniest creatures ever? I used to use humor to hide from pain. Now, I just find so many aspects of life ridiculously funny. That's a God thing.

So, TMI? I don't know...I'll keep an eye on the line, and try not to cross it. Especially where my loved ones are concerned. As for my own story, I have a feeling that when I finally write my book, it'll be an open book. Just like me.

Oh, btw, as an instillation update, one of the side effects of the treatment is a garlic smell coming from the patient. It's a result of the medicine seeping into the bloodstream and creating a chemical reaction. According to Grace, that kicked in last night and is still going strong. She greeted me this morning with, "So, how'd you sleep, garlic clove?" Apparently, it's not the cool, garlic butter kind of garlic smell, either. I don't smell it at all.

At least I'll be safe from vampires....

Monday, August 8, 2011

I finally bit the bullet....yowie!

I went this morning to pick up the medication for my bladder instillation, and then took them to the CLSC to have the treatment done. I have two things to say.

Firstly, wow.

Secondly, OUCH!

Wow, because the CLSC nurse, Rachel, who did the treatment was awesome. She never mentioned teaching me to do it myself, and I certainly wasn't going to bring it up. She says there is another patient who has IC, and is having the treatment as well. Rachel seemed pretty knowledgeable about IC, and was tremendously sympathetic and compassionate. We had a great talk about dealing with chronic pain. She said she spent some time studying chronic pain at University, and it shows in her attitude and the way she dealt with me. I asked if she would be the one to do my next treatment, and she said that if I wanted her to do all my treatments, she would be glad to do it. I felt so taken care of, which is important. The fragile feeling that chronic pain sufferers feel makes it difficult to deal with these kinds of things, and feeling that they will be understood and cared for is so important.

Ouch, because it hurt. Seriously. Thankfully, it was over quickly, but now I have to hold this stuff in my bladder for up to an hour. Unfortunately, I wanted to pee seconds after the treatment was over. It's going to be a long hour. I am actually writing this now to keep my mind off of my screaming bladder. The treatment, while quick, was painful enough that I had to stop talking (now that's pain!), broke out into a cold sweat and felt a bit nauseous. At this point, even the bottom of my feet are twinging. Yikes.

Gracie came with me and sat in the waiting room, praying. What a gift she is. You know, people can tolerate a lot more pain and suffering when there are loving, supportive people around. Even though I can barely sit still here, I am so grateful to God for being there, for strengthening me, for provided a health care worker who was caring, supportive and efficient, and for providing Grace, who is now busy making me lunch because I can't decide whether it hurts more to stand up, walk around or sit here.

So...I've got 15 minutes to go. That's not too long...right? Right?


Oh look...6 minutes to go. Yay!

Thursday, August 4, 2011

Crunching Numbers and Feathered Friends

Last night I was doing some number crunching. Right before bed. Not a good idea. No matter how much I frowned and fussed over my scribbled calculations, one plus one would not equal what I needed it to equal. Darn math.

Later that night I lay in bed, in the dark, listening to my rhythmic breathing through the Cpap machine and the frantic chaos in my head. What if, what if, what if. Thinking thoughts that were exhausting me and keeping me awake at the same time.

I was also praying, but not in the official, our Father Who art in Heaven, hallowed be Thy name way. From the very beginning of my life with God, the only time I don't just assume that God is present in the midst of my inner dialogue is when I am thinking about something I'm pretty sure He won't approve of. Then I just pretend He's not there, because of course, He knows everything. Which I know is true because when I am in repentance mode after the stupidities that I allowed myself to think begin to bear yucky fruit in my life, He always wants to return to the scene of the crime, which He is eerily familiar with even though I had convinced myself that He wasn't even there.

So, I was lying in bed, fretting and trying to work out the exact nature of the miracle that I was going to need God to perform for me in order to make the debit and credit columns of my checkbook add up. I asked Him, again, to show me that He is taking care of me. He's made it pretty obvious over the years, and especially over the past few months, that He is serious about meeting my needs. Still...

I believe, Lord, help my unbelief. I am beginning to think that I use this verse as a cop out. I understand that God is so humongous and amazing and wonderful that I will spend all eternity learning about Him and still only tap the surface of who He is. So there will always be some level of stunned disbelief when faced with a new level of His character and power. Still, I can get lazy about my disbelief, make excuses for it, ask for signs just because it's too much trouble to choose to believe based on God's past faithfulness.

In any case, I asked God to, once again, show me that He was taking care of me.

This morning, I took Grace to the teen day camp that she as been attending all week at St. Andrew's in Huntingdon. On the way back, I pulled into my parking space, got out of the car and noticed two mourning doves on the road together, a robin on the lawn next door and a sparrow taking a bath in a puddle at the end of my driveway. I leaned up against the car to watch them. They were going about the business of their day, utterly care-free. Bathing, finding food, hanging out together. Living life, one day at a a time, one moment at a time. It was beautiful.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:25- 34

Do not worry. Do not fret. Once again, message received. The ironic thing is that as I was turning onto my street, I was thinking that I needed to stop whining at God about signs, that I needed to grow up and believe. God knows me better than I know myself. I am entering entire new territories of trusting God here. I willingly follow God into the deep waters of circumstances and relationships that test my faith and invite me to love others in radical, powerful ways through the work of God's Spirit in my life. I stumble and fall...a lot. God keeps inviting me to get back up, and I do. There are times when God is tougher on us than we ever imagined He would be. Then, there are times when, even though we know we don't deserve it, God meets us where we are, with gentleness, kindness and divine understanding.

Yes, I asked for a sign. If God had said, no sign, I would have been okay with that. Instead, He gave me a glimpse of His care in a diverse group of fine feathered friends, living life as it is meant to be lived, with freedom and trust and in community. As far as signs go, it was a good one.

Wednesday, August 3, 2011

Thank you for being a friend...

When Jean-Luc met Clarence, it was love at first sight. Never mind that Clarence belonged to Grace. Never mind that he was bought at FAO Shwartz in New York City, that he was the most expensive stuffed toy that she owned, and that he was named after Clarence Clemmons, the legendary saxophone player for Bruce Springsteen and the E-Street Band. Jean-Luc didn't even care that Clarence Clemmons had recently passed away after suffering a massive stroke, leaving Grace and I mournfully listening to Clemmon's sax solos on Youtube and waxing nostalgic about the Springsteen concert in T.O that we attended several years ago.

None of that mattered. Love is love. So Grace gave Clarence to Jean-Luc.

Besides, we're both pretty sure that Clarence Clemmons would have approved.

Tuesday, August 2, 2011

Hearts of Stone, Hearts of Flesh

"I will give them an undivided heart and put a new spirit in them; I will remove from them their heart of stone and give them a heart of flesh. Then they will follow my decrees and be careful to keep my laws. They will be my people, and I will be their God." Ezekiel 11:19-20

There are few things more difficult than loving someone who is filled with hate. Hatred is such a cold, hard thing. Like a stone. Often, we can tell when people are trapped in hate just by spending a few moments with them. They are like granite, harsh, even sharp. Graceless, angry, bitter, sour, frigid. There is the feeling that if we bumped up against them, it would hurt. Even a mistake would earn us retaliation. Cold words. A heartless rebuke. Sarcasm. Ridicule. Disdain. God help us if we ever sin against a person filled with hate. Forgiveness does not seem like an option.

I think the most distressing thing about loving someone like this is the fear that nothing could every break through the steely armor that has been built around them. It feels as if we will never be able to touch their hearts, to move them to softness, compassion. The fact is, it is entirely possible that we will never be able to penetrate the fortress of their hatred. Hearts of stone are notoriously difficult to move.

Thankfully, God is in the habit of changing hearts of stone into hearts of flesh. Gentleness, kindness, compassion and love can be restored. Yes, it is a choice, but there is a price to be paid for choosing a heart of stone. God graciously sees to it that the pain of a cold heart is deeply felt. Hateful people are not happy people. Behind the clenched teeth and steely eyes lies a deep well of pain and torment, loneliness and longing. God gives every incentive and every opportunity to seek change. We can trust Him, and rest in His willingness and ability to work in the hearts of those we love.

There are few things more difficult than loving someone who is filled with hate. Still, with God's Spirit within us, with His love, wisdom and patience, difficult things become possibilities.

Monday, August 1, 2011

"You want me to do WHAT, myself?"

I'm holding the papers again. Reading them again. As if in the re-reading, they might say something different. Something less painful.

They are prescriptions. One is for two medications, Rimso-50 & Heparin. The second prescription is for the CLSC nurse, and it instructs her to instill the Rimso-50 and Heparin into my bladder as a treatment for interstitial cystitis, using a #16 catheter.

It has occurred to me that being able to read what is written on these papers is remarkable, given it was written by a doctor. Of course it is doctor-scratch, but readable doctor-scratch. Which, I guess if one was groping for positives, is a positive. It enables me to repeatedly read what is written on the papers, which encourages the ridiculous hope that at some point I will read something, anything, other than the fact that these meds have to be put directly into my bladder using a catheter.

I have also been told by a nurse at the medical centre that I will be taught how to do these treatments myself. Oh, joy. Oh, bliss. Oh, excuse me while I vomit.

The date on the papers is July 12th. Yes, I have been stalling. At first, I was at camp and so stalling came naturally. Then I was recovering from camp. That took a whole week. Then, I just didn't want to do it. I promised myself and my poor beleaguered bladder that this week would be IT. My bladder has reacted by flaring. I feel as if the lower half of my body is filled w/razors, and not the dull, dollar store ones, either.

And so, I hold the papers and re-read them and hope in vain that they don't say what I know they do say. I am afraid of having the treatments. I don't want any more pain. When I looked up the details of these medications that are supposed to decrease my pain level, it always disturbs me to find that increased pain is a side effect. I can handle my face puffing up like a birthday balloon, or hands going numb, or my knees turning purple, but more pain? Seriously?

Pain like this makes me feel weak, panicky and fragile. I am usually careful about who I talk to about how I feel in times like this. Inevitably, there will be a perfectly healthy person who wants to tell me how tough they are with pain, how they have dental procedures without anesthetic, how they give birth without happy drugs, how their last kidney stone was passed while squatting beside a hayfield, after which they hopped right back onto the wagon and kept on baling hay.

I have to admit, it takes all the power of God working in me to keep my mouth shut when one of these dear, brave ones comes down with the sniffles and spends 19 minutes of a 20 minute conversation whining about sore throats and red noses.

"Didn't they have any of those tissues with the lotion in them? *cough cough*"


It has been my prayer all along that being chronically ill would make me more compassionate, and that I would be able to see that those who don't understand, who judge harshly in ignorance or arrogance are much worse off that I am. Everyone suffers physically at some point, and compassion prepares us for our own suffering as well as for that of others. Those who have admonished me to "will the pain away", or to trust God more are left discouraged, lost and subject to their own judgment when they are unable to will their own pain away.

Being in pain, especially when it is as intense and sharp as it is now, automatically creates a fear reaction. The body is convinced it is in danger, especially when the pain is visceral. Facing a medical procedure that may increase the pain is a daunting task, at the best of times. I think, by writing this blog post and re-reading the prescriptions sheets, I am giving myself permission to be daunted.

I am, officially, daunted. Which is not to say that I am not going to show up at the front desk of my local CLSC, clutching my well-read prescription sheet, pale, shaky and ready to act a complete fool if only it will cause some compassionate soul to take pity on me and not leave me to do these treatments myself.

The thing is, God and I have been talking about this, and I think He's right. Trusting Him means acknowledging the pain, admitting my fear, and asking Him for courage that is beyond myself. It means choosing to believe that His love is real and active in me, even when my hands are shaking and the very word "catheter" makes me cringe. It means that this entire situation is about more than white lab coats, doctor-scratches, and medicines that may or may not burn. Even if at this very moment, I am not sure what it is all about, God knows. Which is not such a bum deal. Seriously.
My Zimbio