Space for Grief

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Living with Cystic Fibrosis is hard. I am reminded daily that my body does not work properly and that to continue to live, I must fight. Some days I become weary. Some days I feel sad. I’ve been learning lately to give myself space for grief. Grief is unpredictable. It can be triggered by an event or a period of intensified struggle, and sometimes it surges up unexpectedly.

I’ve had a few times recently were grief has darkened my day. These dark days have traditionally made me feel guilty. I regularly see quotes such as these:

Someone out there is praying for all the things you take for granted.

Remember, no matter how many problems you have, there is always someone who has more.

These sentiments surely have a place in our world. In our consumerist culture it is easy to be in a perpetual state of discontentment and lose sight of all our blessings. We complain about minor inconveniences. We take things for granted. Many of us, including me, have not suffered the extreme hardships of hunger, violence, abuse, or the loss of worldly possessions that are rampant in parts of our world. It is important to remember that and to retain a proper perspective.

Sometimes when a wave of grief hits me, it brings with it a big dose of guilt. The voice in my head berates me. You have no right to be upset. So many are suffering so much more. Many CFers struggle far more than you do. Remember all those healthy years you had. You have a loving husband, a beautiful son, a supportive family, true friends, a wonderful home. Look at all you can still do.  And the list goes on.

It’s true. I am abundantly blessed and I know it. However, the pain in my life is real too, and sometimes I need space to grieve that. Sometimes I need to pour out my heart to God, lamenting the pain, explaining my hurts, expressing the sadness and disappointment. Grieving doesn’t have to be angry and bitter. It doesn’t have to indicate that I’m not trusting God, or that I feel sorry for myself, or that I’m not accepting my situation. Grieving doesn’t necessarily mean that I’m not thankful. It is possible to be grateful for all the good in my life, all the blessings, all the wonderful things that have come out of my challenges, even to be thankful for the challenges themselves while allowing myself to mourn the pain, the loss, and the ongoing adversity. Some specific struggles have endured for years with ups and downs, times of hope and times of despair, bends in the road, minor bumps and major setbacks. At times I feel tired and bruised. There is chronic hardship in my life that will never leave me. Barring a miracle, there is no end in sight on this side of eternity. It’s hard. It’s sad. And so I grieve.

Tears can be cleansing–a discharge of the pain bottled up within me. It’s as if their release waters the soil of my soul, making way for acceptance, joy, and peace to bloom once again. When I take my hurts to God, I find the grace I can’t always extend to myself. There is no guilt there, no pointing finger, no accusations, only the reassurance of God’s love and His presence.  There is the reminder that while I will continue to struggle, I will never struggle alone. There is healing in that place of grief.

I felt compelled to write this post today. It’s definitely for me. This is something God is working out in my heart. Grief is a gift I’m learning accept without guilt and without comparison. But perhaps it’s for you too. Maybe you need to give yourself some space to grieve.  Maybe it’s time to stop pretending that your pain doesn’t exist, isn’t that bad, or doesn’t matter. Maybe you need to allow those tears to fall so that true acceptance, joy, and peace might thrive in your life again. Maybe you need to hear God whisper to you how much He loves you, how much He cares, and how through it all, He will never leave you or forsake you.

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Weeping may endure for a night, but joy comes in the morning. Psalm 30:5

 

Another 20-Year Anniversary

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The year 1996 was a big year for me. It was the year Jaime and I started dating. It was the year I graduated from high school. After graduation, I turned 18. In the fall I headed off to college. There were lots of milestones!

There was another big event for me in August of that year. The first weekend, I went to meet the girl who was to be my roommate for my Freshman and Sophomore years of college.  I remember having a stomach ache on Sunday that weekend. Thursday of that week that I wrote in my journal about abdominal pain and fevers. Friday morning I had an allergy appointment and my mom took me even though I was ill, feeling that perhaps the allergist could shed some light on my condition given her medical background and expertise. Once we got there she began examining me and when she touched my abdomen, pain surged through me. I shot up off the table, surprising all three of us. She knew right then it was probably my appendix and rushed me across the hall to where my physician had his offices. Within a few hours I was in surgery.

These days, appendectomies are often done laproscopically, but 20 years ago, we weren’t even presented with that option. We were hopeful, however, that the procedure would be routine and I would be out of the hospital after a few days. That was not meant to be. Once I was in surgery, they found that my appendix was hugely swollen and had perforated. Infection had spilled out into my abdomen and infection and scar tissue were clinging to my large and small intestine. They had to remove portions of both intestines as well as the appendix.

At the time, it was also determined I had a mild case of bronchitis. Out of concern for my lungs, the doctors decided it was best not to put me fully under for the surgery. The exact details are fuzzy in my mind, so I turned to my journal to fill in the details. There I reported that they gave me a spinal injection but I was partially aware during the surgery. Apparently I was lashing out and hitting at the doctors and nurses. They gave me a shot after the surgery to help me to forget. I did forget the surgery itself but had nightmares for months after the procedure as my subconscious tried to wrestle with the horror I had been through. (Side note: if you hit medical personnel during surgery, however justifiably, they will label you “combative” and that term will follow you around for the rest of your life!)

The first memory I have post-surgery is being wheeled from the elevator into my room. I thought I was screaming and writhing in pain, but was told later that I was in fact deathly still and softly moaning. I wanted to die. I had never, ever felt such a degree of pain and misery and it seemed unbearable. My second memory is of my parents and two of my sisters arriving at my room with a big bunch of balloons. I remember the shocked looks on their faces when they saw me. I remember my mom rushing to my side, and the others leaving immediately. The next two weeks were the most difficult of my life up to that point. I was discharged from the hospital after several days only to be readmitted due to uncontrolled pain and swelling. The infection took a long time to get under control. I became undernourished and unable to eat. Weight melted from my frame. The surgeon, skilled but callous, implied that I was anorexic because I wouldn’t (couldn’t!) eat. He also blamed me for the seriousness of my condition, deciding I must have withheld information from my parents about how I was feeling. He didn’t take into consideration that CFers have stomach pain routinely which makes it seem normal and also builds a pain tolerance that is perhaps higher than average. The staff seemed annoyed and threatening when I pulled my NG tube out in my sleep on the second night. Nothing was going right. It was an awful experience.

There were good things that happened too–Jaime came to visit me and brought me a cheerful stuffed Tigger. My sisters and dad came to visit regularly. My aunt and grandfather came. People sent flowers and little gifts to cheer me up. And my long-suffering mother stayed by my side most of the time, fielded phone calls from me in the middle of the night when I was despairing, and read to me to help pass the time. One day she read these verses from 2 Corinthians 1:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (v. 3-5)

Those verses meant a lot to me during those weeks and the time of recovery that followed. It was the first time in my life that I was in real trouble. I was dealing with an infection serious enough to cost me my life. I was being cared for by a surgeon who was unkind and unfair. I was due to leave for college and didn’t know if I’d be strong enough to go. The future felt uncertain. And yet I felt God’s comfort deeply, perhaps for the first time. I found joy in knowing that this comfort I had received could be used to help someone else. It was the first time I personally grappled with the notion of redemption–that God could take a painful and ugly experience in my life and bring good from it. And He did bring forth many good things. I felt forever marked by God’s love and care for me during those days. I learned that life is indeed uncertain and disaster can strike at any time, but that God is a sure and steady anchor and can see us through any storm. I had a new understanding of what real pain was which made me appreciate all the more Christ’s sacrifice for me on the cross. My faith was deepened. I understood a little more about how much my sister Sheri had suffered with her CF and I felt compassion and respect for her.

I also had new eyes through which to see the pain and suffering around me, and once I got to college just weeks later, I found that hurt was rampant in people’s lives. I had friends who were scarred by abusive pasts, friends who were struggling with depression, and those simply looking for acceptance and love from a cold, hard world. I found I could relate to them a little better, and I felt deep sadness for the wounds that were ongoing, unable to be fully healed by the passage of time.

Although I thought my wounds were fully healed, years later, we discovered that this surgery was a big player in the infertility I was experiencing. In an exploratory procedure, our reproductive specialist discovered that my abdomen was full of scar tissue from the appendectomy and was it creating a mess of things. And unbeknownst to us, one of my fallopian tubes had been removed and tied off, a detail the surgeon failed to mention back in 1996. While the infertility was painful and difficult, it was another formative time in my life where I learned to trust God and accept His plan for me. In a spectacular show of redemption, Lucas was born on August 9, 2011–the 15th anniversary of that dreadful surgery. His birth on that day reminded me that our hurts do not go unnoticed by God. He sees, He knows, and if we allow Him to, He works all things together for our good, no exceptions. What a miracle.

That experience 20 years ago marked my transition from childhood into adulthood. It was a time of major growth for me. It was also the first of several times where I was in real danger and God preserved and protected my life. After that I knew without a doubt that He had a plan and a purpose for me. I knew that my life wouldn’t be perfect–couldn’t be perfect in a world so marked by pain and suffering. But I also knew that He would be my faithful guide and companion, and that He would provide whatever I needed. And He has. Great is His faithfulness.

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Bondo’s Song

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The neighbors who live directly behind us are bird enthusaists.  They have several bird feeders in their yard along with a large bird bath. I see many different types of birds–finches, robins, cardinals, woodpeckers, blue jays and others that come to eat and splash in their little oasis. The neighbors keep their feeders filled and the bird (and squirrel) populations well-fed. It’s nice for us because we get to see all the beautiful birds and hear their cheery songs without any effort on our part.

This spring, one of the birds that has taken up residence in our adjoining backyards is a robin Lucas calls “Bondo.” Bondo must have a few loose screws. For the past several weeks, that bird has been flying into our bedroom windows upstairs, trying to get into the house.  He will perch on a nearby branch and then make 5-10 attempts to get in, banging and flapping against the window and making  a mess of it.  Then he’ll go back to his perch to rest and to sing his song before starting up again. We’ve tried a few different things to get him to stop but so far nothing has worked. Lucas has told me on multiple occasions that someone needs to help that bird.  If only we knew how!

In my current situation, I feel just like Bondo. I’m looking ahead and I can see the place I want to be.  For me it’s the place of normalcy–renewed health and strength, freedom from the bonds of constant illness, freedom from additional medications, and a return to my normal life and activities. I can see it and I move towards it…I’m almost there…boom! I slam into a wall.  A virus. Then a secondary infection. Then another virus. More infection. A bout of pink eye, just for fun.  Another virus. My asthma goes haywire. Spring allergies start up. Well at least cold and flu season is over, right? Wrong!  The worst virus of them all strikes. These things are making a mess of me. I don’t enjoy smacking into these figurative walls any more than I imagine Bondo likes smacking into the literal one.

I keep coming back to the word steadfast that I chose as my focus word for the year. I wish I could say I haven’t been shaken by all this, but that wouldn’t be true. It’s been hard. Very hard. I am so weary of it all. The dictionary defintion of steadfastness is “resolutely firm and unwavering.” The word “resolutely” implies an action and a decision on my part. I can tell you that my heart isn’t steadfast by nature. I get frustrated with myself sometimes, feeling like after all these years it should be easier to react to my adversity with hope and trust, even joy and thankfulness. But it doesn’t feel any easier. It still takes a firm decision on my part to shift my gaze away from my circumstances and onto God, to push my fears aside, and to trust Him. To believe Him when He says He works all things together for my good, and that He loves me with an everlasting love. It takes resolve to be patient in suffering and persistant in prayer. And it’s not just a one-time resolution. Sometimes it’s a many-times-a-day resolution.

Loose screws or not, Bondo Bird has something to teach me. What keeps him coming back to that window?  He must expect that one of these times he’s going to get in, and it will be worth all the effort. And even in the midst of his struggle, he keeps right on singing his sweet song. That’s just what I need to do–stay hopeful and patiently persevere through this hard time, expecting that I will break through. And in the midst of my struggle, I need to keep a song in my heart.

This morning just the song I need came to my mind, a hymn from childhood I haven’t thought of in ages. It goes like this:

Oh Love that will not let me go, I rest my weary soul in Thee; I give Thee back the life I owe, that in Thine ocean depths its flow may richer, fuller be.

O Light that followest all my way, I yield my flickering torch to Thee; my heart restores its borrowed ray, that in Thy sunshine’s blaze its day may brighter, fairer be.

O Joy that seekest me through pain, I cannot close my heart to Thee; I trace the rainbow through the rain, and feel the promise is not vain that morn shall tearless be.

O Cross that liftest up my head, I dare not ask to fly from Thee; I lay in dust, life’s glory dead, and from the ground there blossoms red, life that shall endless be.

~O Love That Will Not Let Me Go, George Matheson, 1882

I am held by God, and there is rest for my weary soul. There is light for my way, and joy in the midst of my struggles. There are rainbows to trace through the rain. There is joy and a promise of better days. I accept my struggles believing that through them flow blessings, and richness, and fullness of life. That’s my song.

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The Adjustment Phase

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It’s unseasonably warm and sunny here today, a glorious 66 degrees. I adore the hope of spring with its promise of new life to come, colors warming their way back into the landscape, balmy air to breathe and a plethora of activities beckoning me out of doors.

I’m especially grateful for this weather today as I’ve entered what I like to call the adjustment phase.  A little over a week ago I finished up a three week round of antibiotics, and a few days later wrapped up my 12 day steroid burst. In theory it’s great to be off those medications. In practice, it’s rough being off those medications. For otherwise healthy people, taking antibiotics cures the infection in your body and when you complete your course, the infection is gone and normal life commences. For me, antibiotics suppress the bacteria that has taken up permanent residence in my lungs allowing me to feel much better, but the infection is never 100% eradicated. I remember a lung culture that was taken after my first round of IV antibioitcs last spring. The antibiotics did such a great job that the only thing that grew out was what the report termed a “rare” or small amount of a common bacteria called Staphylococcus (responsible for the well known Staph infection). The big guns did their job.  One month later, although I wasn’t acutely ill, my lung culture showed numerous amounts of staph and psuedomonas, the other bacteria that grows up in my lungs most of the time. Because of my cystic fibrosis, the conditions in my lungs are such that bacteria thrives there and I cannot ever be completely rid of it.

I have noticed as my condition has progessed, that five days to a week after I go off antibiotics, I go into a phase of increased struggle. The bacteria in my lungs are returning to their chronic levels.  My chronic cough returns, my congestion levels rise, and my chest, back, and abdominal muscles become tight and sore since they seized the opportunity to atrophy with decreased use during treatment (who can blame them!). I often have several days where I feel chilled and feverish even though my body temperature remains normal. I think my body initially puts forward a strong immune response as it readjusts to life without the drugs. It is difficult because I go from feeling better than normal while on antibiotics to feeling worse than normal within a few days as my body finds its footing.  The first week following antibiotics and steroids often still includes some of the side effects of the drugs as well such as poor sleep and stomach issues. It’s hard to deal with those side effects without having the benefit of the drugs.

I always know that this adjustment phase is coming, but it is distressing every time. It is hard physically, but it is also hard emotionally. I get to enjoy an easier, more normal life while on antibiotics and steroids, and that is such a blessing.  We had some really great times the last few weeks–sledding and snow play with Lucas, a family day at the zoo, some messy hikes in the woods, and an uncharacteristically clean and organized house. I had a couple of great runs on the treadmill where I felt strong and invigorated. I felt less restraint, more energy, and more freedom. It is hard to come off those highs and get reaquainted with the lows. It’s hard to trade that feeling of freedom for resistance and restriction.

Today as the sun was shining down on me, the light and warmth felt healing. It reminded me of a verse from Malachi.

But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture. Malachi 4:2

The Sun of Righteousness refers to Jesus, and his wings refer to the fringe of his robe. Jewish people had fringes on their robes which identified them as belonging to God, a representation of their identity. I just read the story of the woman who had suffered for 12 years with a chronic bleeding condition who reached out to touch the fringe of Jesus’s robe and was instantly healed. She seemed to understand that because of his identity as the Son of God, He had the power to heal her, and so she touched what represented who He was. Reading stories like that makes me long for healing, and although I cannot physically touch Jesus’s robe, I often reach out to Him and ask Him to heal me.

And Jesus always answers me with a measure of healing, whether physical, emotional, or spiritual. There are days I breathe easier. There are moments where I feel supernatural strength. There are times where my heart is secure and steadfast against all odds. There are moments when fears and worries flee and I am filled with peace, and times when my trust in Him and His perfect plan are renewed. I know that some day I will be healed completely. It may not be until I reach heaven, but the chains of this disease are temporary. Jesus has brought me through valleys, He has allowed me to walk on heights, He has protected and sustained me and allowed me to say, even on the darkest days, and even during this pesky adjustment phase, “it is well with my soul.”

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“But as for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2