Category Archives: Sitting in Saturday

As we wait on the Lord – may He renew our strength!

Loving and Letting Go ..

Tonight is the first night in over 20 years that we went to bed without a kitty sleeping somewhere in our apartment – usually on the bed or on one of us – vying for space and sticking close. It is the wee hours of the morning as I get up, finding sleep elusive even after hours of intermittent sniffles and sobs and exhaustion since the departure of the 4th feline of our union of almost 22 years.
Josie
My grief is further compounded by the loss of my Aunt Connie Boe the morning before letting our Josie go. The grief my cousins, and their families can’t compare to losing their mom, and grandma – but it is loss – grief – a void where something that has been living with you, next to you – in your home – something that should still be there living and breathing and sleeping with you in the same bed or living space is now gone. Snatched away – in a way that should never be. Should never have been.
Connie knew she had lung cancer for a few years now – she actually kicked it for a while after her first round of chemo and radiation – something the doctors were surprised by – and we, her family were overjoyed by. The reprieve didn’t last, and as is cancer’s way the days stretched into months and a year or two before cancer took her away from us – leaving an ache and memories in place of the ones we wish we could still hold close. We had some time to prepare – as much as one can prepare for the loss of a parent or relative. We had a good Mother’s Day weekend visit, when she was still able to sit up and converse with us and enjoy some food we had prepared for her. Yet we know it would only be a matter of time before she would have to go.
Aunt Connie Boe
We think it will be easier if we have time to prepare – get used to the idea that we know their time is short – but it isn’t – not really. We tell ourselves that we don’t want them to suffer as they begin to decline, and we see them growing weaker and less able to muster the strength to do the things they were able to do the months and weeks before and they slow down to a crawl and eventually come to a stop before they slip away from us. It still seems that our hearts have broken into little pieces, leaving a hole that was once filled by them after they have gone. We’ll hear the pastor or priest talk about this not being permanent – that because of faith in God we have hope.

Revelation 1:17-18
17 When I saw him, I fell at his feet as though dead. But he laid his right hand on me, saying, “Fear not, I am the first and the last, 18 and the living one. I died, and behold I am alive forevermore, and I have the keys of Death and Hell.

So as the morning dawns on a new day, and we continue saying our goodbyes and weep for those we’ve lost – and wish we could just hold, or talk to them one more time – and feel the ache that their leaving has left us with – let’s grasp hold of the Hope of the words of the book of Revelation – that we are not to fear because Christ has conquered death and hell and our good-byes are not forever!

Created to Create

Most of us who write, or dabble in the blogosphere, do it out of some sense of a calling, or desire for our words to communicate, educate, and touch the lives, minds, and hearts of friends, family and anyone else who might want to take the time to read what we’re passionate about or what’s kicking around in our souls. As Christians, that would also include what God places on our hearts to express – or things we are burdened by. There’s a risk involved in crafting words together and putting them out there in a blog or a book. Many of us, if not all, have some level of fear that our words are not interesting, significant, original or won’t be valued.

Red Tent Living is a blog that seeks to reframe femininity by inviting readers and bloggers – anyone who wishes – to share their heart, thoughts and stories. There are monthly themes according to the seasons and ebb and flow of life. One of the December themes that jumped out at me was hope. The year was quickly drawing to a close, and the deadline for submission was coming. The Friday before Thanksgiving, I returned from a spiritual direction conference that the Lord used mightily to renew His Spirit and hope in my soul. It was a sweet time of seeking wisdom and understanding and finding fellowship while simultaneously being devastated by how deeply wicked and sinful I am. It was also a time of deep realization of how completely and totally Christ’s suffering and sacrifice atoned for my sin and reconciled me to God. I found myself experiencing the freedom to find and follow His calling of service to love my husband, family, friends and whomever He brings across my path in new and deeper ways.

We had friends staying with us in our cramped nyc apartment over Thanksgiving. It was a great time of cooking, relaxing, feasting and giving thanks for the abundance of God’s Grace and mercy – even though my friend’s marriage of 30 years was ending. After the festivities were over, and our friends were on their way back home, I finally sat down and began writing my thoughts on hope.

The doubts and insecurities started swirling around in my head as soon as I hit the “send” button – like tiny little flashing neon banners: “You rushed to get this done, and didn’t communicate as well as you could have.” “Your words don’t flow as easily as some of the posts you’ve seen from others.” “Are you really doing this for the glory of God, or for yourself?” “You should email the moderator and tell her your post is too rough, and you want to withdraw it, or at least rewrite it.” “Who do you think you are, and why would anyone want to read your story?” I pushed away the doubts (with the help of the Holy Spirit – I hope), and decided to just leave it be.

Here is the post I submitted: Seven and Jubilee

My reason for telling my story, is because I see all around me how our stories are being woven into the larger story of God and His redemptive work in our lives. He has saved us – redeemed and restored us – and countless times has reached into the messes that I’ve made, or the life and death situations I’ve faced and worked something good – even miraculous from some of them. The post above condenses some of the story that I’ve started telling in this blog. It’s a story of the power of God’s presence in my life – He has sustained me in miraculous ways – but there’s a parallel story that’s going on as well – the story of evil. Our world changed when evil convinced the parents of mankind that they deserved to have more than God had offered them – to be equal with God and know what He knew = good and evil. For now the prince of this world gets to continue to attempt to convince us all that God is not good and to entice us away to believe that we deserve what God seems to withhold some glory for our accomplishments. What can slither in, is a demand for life to work well now – it seems so reasonable. After all, didn’t I endure the pain, uncertainty and suffering – and manage to hang onto my faith in this long obedience of almost 40 years? I am grieved and jolted by the undeniable reality that I/we are nothing without God. We’re not capable of anything good apart from the grace and mercy of Christ. His sacrifice is what brings new life that, when I repent, wipes out my sin and the arrogance of believing that I deserve anything but condemnation and death.

Something that’s been kicking around in my soul these days, is, what does it mean that God created us in His image? And how do we not lose heart – and our faith – when the onslaught of life becomes unrelentingly, incomprehensibly difficult in our broken world?

Psalm 8
4 what is mankind that you are mindful of them,
human beings that you care for them?
5 You have made them a little lower than the angels
and crowned them with glory and honor.

We’ve been crowned with glory and honor – given the capacity to enjoy these gifts, but are still just a little lower than the angels. Lucifer was not only an angel, but he was an archangel – above the other angels in beauty and intelligence. His place was in the very throne room of God and he was called the son of the morning. It was there, in that elevated position, in the presence of Yahweh, God of the Universe, that he decided he wanted more – deserved it.

Isaiah 14
13a You said in your heart,
“I will ascend to the heavens;
I will raise my throne
above the stars of God;
14 I will ascend above the tops of the clouds;
I will make myself like the Most High.”

He wanted the glory and worship for himself – and if that wasn’t enough – he wanted to be higher than God – to rule over God Himself. I’ve known about Lucifer from the time I was a child when Carol Kelly and Bette Mynatt did amazing Flannelgraph stories to illustrate the story of his fall from grace – and then Adam and Eve’s fall from grace when they listened to Lucifer – in the form of the serpent. They all wanted more.

If we’re truly honest with ourselves, isn’t that what we all want, on some level? We want to be more beautiful/handsome, smarter, healthier, wealthier .. we want to be at least equal to God, if not above Him. When we create (occupations, music, art, books, buildings, towns/cities, sports teams, marriages, children, sermons, speeches, tweets, blog posts, meals, etc.) we do it for glory and honor – because we were created for the capacity to give and receive and to create. The question that we are faced with every moment of every day that we’re awake, is, “Who are we seeking glory and honor from, and to whom are we giving it away, and what is driving us to do so?” It is a constant undercurrent that is always running in the background, but we’re rarely aware that it rules the choices and directions we choose.

As the years continue to multiply, I find myself wrestling more and more with the realization of how much I want to be of help to others – “do” something to validate my existence in this world – especially since I no longer have a formal job. I also see the demand underneath – “Look at me. See into me. Validate me. Honor me. Revel in me. Want me. Believe in me. Love me.” – because I am not enough by myself. I want more. I deserve more – was created for MORE. It’s the same thing that Lucifer and Eve were after – they wanted more and they took it.

The wanting, groaning and longing for more are not the problem. We want more because we were created for more – the only beings created in the image of our Creator – but what do we when it seems what we have been given is not enough – and more often falls far short of filling us or satisfying that ache in our soul. When it doesn’t, we look for who is responsible. After all, He says He gives us life abundantly!! If that’s true, then why don’t I feel that way much of the time? Don’t I have a right to “name it and claim it?” But when I do that, it becomes a demand that crosses over to the dark side of sin. That’s when we are led into temptation to believe that God is no longer good – that He’s withholding what we NEED to make our life work the way WE want. We start down the slippery slope of trying to create our world on our OWN image – all the while convincing ourselves that God wants us to be happy, successful, fulfilled, self-actualized and whole. We employ the power of positive thinking and prayer to convince ourselves to keep trying harder, rather than collapsing into the weak, messy heap of groans and longings that will propel us toward The only source of true Help we have. We grow to hate Him because He will not bend to our will. We blame Him because He could do something to relieve our pain. We give up on Him because we stubbornly and foolishly believe that we can have all the glory and honor we long for this side of heaven. When I look around, a lot of people I see in the pews next to me seem to have a much bigger piece of that abundant life than I do.

If we’re lucky, we won’t be able to make things work the way we demand, and will be forced to have it out with the God of the Universe. We’ll fight until our strength fails, or we’ll give up and admit defeat – and that’s where the fork in the road comes. Am I the god of my universe, or is He? Will I heed The Hound of Heaven and find Him to be the Refuge that I have desperately longed for, or will I slip into despair over my inability to achieve all I want and give up on believing in a God Who would dare to not give me what I want. Maybe I won’t give up the fight at all, and just continue to seethe and rage and pour contempt on what I find myself wanting – whatever it is that I believe I need to make me whole.

Matthew 7
13 Enter by the narrow gate.
For the gate is wide and the way
is easy that leads to destruction,
and those who enter by it are many.
14 For the gate is narrow and the way is hard
that leads to life,
and those who find it are few.

These well sermon-ized verses communicate a truth that many Christians don’t always think of, or take seriously. Probably anyone who’s been a Christian for any length of time knows the verses and understands the concept – but do we think about what it really means? I don’t remember many sermons that addressed how hard this Way that leads to Life is. That I’ve found it more than surprising how hard this narrow way is, would be a gross understatement! What keeps us from relating honestly as brothers and sisters about our struggles and our failures to love like Christ calls us to do and lean on each other. These scriptures are not meant to add pressure – but to let us know to not be surprised when hard things happen to us – when we feel that we’re losing our struggles against our own demons, vices and habits. God’s grace is enough for each one of us, and His strength is perfected when we are weak and needy. The battles in this broken world, and ours against sin, will rage on until we see Him as He is – only then we will be truly like Him – reflect His Glory perfectly – the Glory He created us for and that we eagerly await as sons and daughters – and finally we will be free – Indeed!!

Purple

I’d been thinking and praying about what my first official blog post would be. Actually, I thought “Low in the grave He lay” was my first blog post, but being techno challenged, I didn’t know that I put it in a “special” page spot, so I left it there. Mostly because I wasn’t sure how to move it, and also because it gives  more of the story of how this blog came to be.

While online a few days ago I noticed a friend had changed her profile picture to this:

May is lupus awareness month, and May 10th is World lupus Day. As I’ve waited on God’s leading the last couple of years, we’ve had several conversations about my desire that this blog NOT become a health/lupus focused thing. I knew that, of course, I would talk about it, but I wanted it to happen later, and not be the main point, because God is THE point, but this is where the Spirit moved me, so let’s start with what got my attention about my friend’s post.

I didn’t realize that the lupus foundation had associated itself with the color purple. Everyone knows that pink ribbons are for breast cancer and red ones are for heart disease.

I was barely aware that May was lupus awareness month. Those are the kind of parameters I prefer not to define myself by. (I’ve never liked conformity, labels, rules or judgment – and unfortunately those were frequently what I often experienced from well intentioned Christians – rather than the love and grace we are all called to show one another) I have lived with lupus since 1976 and never realized that they had claimed purple for “their” color. It kind if stunned me. Here’s some of the why.

My Mom tells the story of how, when I was 1 or 2, the first crayon I picked up was a purple one – and I wrote on the walls with it. Evidently, she always knew when it was me writing on the walls and not my twin brothers, who were 3 or 4, because I always found and used a purple crayon. I guess it didn’t occur to me to cover my tracks – I always grabbed the color that delighted me most. Mom loved lilacs and had their bedroom painted lavender for many years, maybe she passed the gene on to me, but I have always been passionate about purple. Mom buys me purple stuff, my sister buys me purple stuff, my friends buy me purple stuff and I buy purple stuff. I never realized that my little sis, who is two years younger loved purple too, until I’d gone off to college and she inherited my ’71 Chevelle and painted it purple! These days I mostly buy purple pens or paper, or a notebook, because we’re trying to de clutter our nyc apartment this year – for the 2nd year in a row!

So, I guess that brings things back around to this blog and lupus. It is probably the thing that has most often, and most deeply propelled me into an awareness of living in Saturday. The lupus Foundation of America calls it the “cruel mystery” because of its unpredictability and the fact that systemic lupus can attack pretty much any tissue or system in the body. I refuse to capitalize the word and will completely change a sentence structure when I’m writing so I don’t have to capitalize the word. I don’t want to deign to give it any distinction. I’m not sure when I started doing that – probably somewhere back in 2007, when I nearly lost my life to the disease more than several times with lupus alveolar hemorrhage. Maybe it was 2009-10ish, after I’d started emerging from the fog of merely existing and was finally able to survive without a nasal cannulae on my face and a tube draped over my ears, connected to either the o2 concentrator at home or in a hospital.

Those were some dark years. I had to stop working both of my jobs (I’ve worked two jobs much of my life) as a counselor/psychotherapist and my moonlighting job for the airlines. I was home, tethered to a long oxygen tube that reached to all the corners of our Inwood apartment. After living on the upper West side of Manhattan for 10 years, the 96th & West End brownstone where we occupied the 2nd floor in a tiny two room apartment, was sold. If I’d become homebound in our old place I would have gone stir-crazy! In June of 2007, as I was being discharged from the hospital the 2nd time that year, my hubby and some beneficent friends moved us 101 blocks North into a 2 bedroom elevator building, a half block from the A train, which also had an elevator. Directly across the street was a grocery store, a pharmacy and a liquor store. Our 207th & Broadway apartment was 3 times the size of our old place and our rent was $500 less!! I was never so sick that I wasn’t able to fill one of the portable canisters that came with my oxygen concentrator and put it in the carrier and throw it over my shoulder and go across the street to get some groceries, drugs (legal!) or a bottle of wine. Even in those soul numbing days, I didn’t doubt God’s goodness. It just didn’t occur to me, come to think of it, not much did then.

During that time, although I wasn’t consciously aware of it, I was struggling to survive – physically and spiritually. I was stubborn, and refused to feel sorry for myself. After all, I was still alive – and I was a Christian who wrestled – wasn’t that “aware” enough? God had gotten a hold of me when I was in first grade. I grew up going to Harmony Bible Church 3 times a week – Sunday morning, evening and Wednesday night. Those were the years that God started hiding His Word in my heart with good news clubs, scripture memory, bible stories, sword drills, youth group and bible study. I didn’t realize it back then – I thought I had Him – but, oh, how He had me – and only He knew just how much I would need Him!

In 2007 I had 5 episodes of alveolar hemorrhage and a sixth one in March of 2008. Many people who have this happen don’t survive the first episode. I was still alive after 6. When I landed in the hospital at Columbia Presbyterian down on 168th street in NYC, for the 6th episode, we were without health insurance and my disability income because my employer had denied my application for long term disability (ltd) several months earlier and said I didn’t qualify for ltd and demanded that I return to work or lose all my benefits – even though I couldn’t survive without 2-3 liters of continuous flow oxygen! I threatened to strap on the portable o2 and my uniform and go show up for work at the ticket counter when we first got the denial letter, but my docs assured me that given the severity of my condition, there was no way that my appeal of the denial would fail. Eventually, it was overturned and all our benefits – insurance and free flights – were reinstated retroactively.

While I was in the hospital in 2008, for a week or two, sitting in Saturday, several things happened. The social workers descended and helped me fill out all the paperwork to file for social security disability (SSDI). Funny, the thought hadn’t even occurred to me, even though I’d been on oxygen for 7 months, that I should file for disability. Plus, I hate labels and just ignored the reality. I was still able!! Until I wasn’t – and when I was sitting in a hospital, without health insurance, I finally had to accept the reality and the offer of help that was given.

Another thing that happened when the rheumatologists there decided that, my most recent flare likely happened because my steroids(prednisone) were being reduced. Because of the severity of my lupus lung issues, it was decided that the prednisone would be increased again to therapeutic levels, and another drug would be added – a chemo drug that is used to suppress the immune system called CellCept.

God and I had more than a few conversations about this. I knew my drug regimen well – understood the ravages of prednisone – hated the drug because of the side effects – when I first started taking it at age 14, I was a normal sized teenager who gained 60 pounds on my 5’3″ frame within 3 months time. Over the years, and many flares later, I’d had more opportunities than I wanted to wrestle with my God, and He brought me to the hard-won realization that I was NOT a fat ugly little girl who no one would ever want to love. I was a daughter of the King of Heaven – and nothing could change that or diminish it. Even though God didn’t spare me from needing to take prednisone – and I have no doubt He could have – instead He faithfully and relentlessly pursued me, through each good day and especially the bad ones, when I didn’t recognize my face in the mirror because of this drug that kept me living and breathing – literally.

2008

2008

2014

2014

I understood and had come to realize that in spite of what this drug I hated did to my body, it saved my life, preserving my kidney and lung function at least 10 times. I will never be ok with what the side effects do to my body, but God has changed my vision and my heart. We talked – I ranted and wept and asked why He felt the need to throw a chemo drug into the plan. Hadn’t I already endured enough – how long would evil be allowed to continue his attempt on my body and my soul? Eventually, God’s Spirit moved in me, helping me to find the hope that lives there, even when I don’t always feel it, showing me that when I let go and die to my will, I’ll find Life in The One who gave His Life to redeem me. As our communion deepened and I finally relaxed in God’s care, I asked Him to spare me some of the side effects of cellcept – if that could be possible – would He please give me a tender mercy as I embarked on this new chemo drug regimen.

When the nurse brought my first dose of the medication, tears sprang to my eyes. The two large-ish oblong tablets were a lovely shade of purple – and I laughed with my God, through the tears – at tomorrow.