when life's not fair

DISCLAIMER:

I really, REALLY did not want to write tonight. (Ironically, as I found halfway through typing this, my friend, Hoops, shared similar sentiments on his blog tonight as well.) But somehow the part of my soul that lives and breathes when my fingers hit the keyboard or my pen hits a pad of paper, once again won out. Just when I didn't want to face the pain of words not being able to turn into sentences being able to turn into anything relatively cohesive, my soul is drawn and breaks beneath the weight of simply letting my heart speak, regardless of what shape it or I am in.

So, I'm doing something I don't do very often. As there are a myriad of circumstances in which I shy away from my blog and do not feel safe to process raw emotion on her as it is public and all, tonight I have simply had to let my heart bleed and share some of the heavy of my heart off and on the last few days which have been really good in many ways, but also really hard in others. Here is some of the hard.

Currently reading Cry of the Soul and though I'm barely a few pages into the first chapter, I love the basic premise of the book so far, of how we often shy away from our negative emotions like anger, resentment, shame, bitterness, etc, yet how ALL of our emotions, and even more poignantly, the pain of the difficult ones we try so hard to avoid, are CRUCIAL in revealing various aspects of the very nature and heart of God.

More on that possibly later, but this along with several other happenings as of late has given me courage to post on a night even when all day I was debating on posting, then in the last couple hours alone realized I simply HAD to, or I would explode ;) so Mags unedited, uncut for the state of my heart since 1:30 am this morning. (and once again I was planning on writing a couple of paragraphs and this somehow turned into 11 pages, READ AT YOUR OWN WILL lol. And another disclaimer, most of this is venting and not personal nor am I intending to offend anyone, but since I am leaving in a lot of what I normally would cut out in being careful to not offend, sorry, I don't have the energy or capacity to do so now, so if so, we'll cross that bridge when we come to it.)

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As I was saying. Life is not always “fair.” Sometimes we just need to say that. I know I have and I have been so grateful for the friends in our lives who have reminded us and said that with us. Reminding us that it is okay to be angry. It is okay to say this is not fair. It is okay to want things to be “normal” just once again. It is okay to wish you didn't have to go through this. It is okay to feel angry or jealous others do not understand how hard this is and that they don't have to go through something like this.

Life is just unfair.

There have been several crashing waves of grief that have come in the most unaware moments the last few days and I am always amazed at how God continues to bring us through them, yet as we have reality fly back in our faces as we desperately just wish we did not have to face another day of this.

Moments of normalcy will break forth after these as we recover from the storm and figure out what is best to do the rest of the night. We have become experts in learning how to cope yet find ourselves having to re-learn, re-embrace it all as even as hard as we try to escape it, grief finds it way to collide on the surface of our lives again, no matter how hard we try for “normal.”

And it simply is not fair and it seems there is always more yet to grieve.

“Normal” things that other couples or other friends get to do, “normal” things that feel no matter how hard we try, we find everyday we are only swimming upstream.

There have been several pangs of this feeling of just simply craving “normal,” being angry at this season and all this illness has brought into our lives, being tired of still going through this and that this race that is not a sprint, but a marathon as I always remember those brilliant words from my counselor... those difficult moments have been interspersed with moments of relief. Joy. Laughter.

And praise God for giving me the only person who can make me laugh and who I can find myself laughing and joking around with and singing silly songs and dances in the kitchen, making our silly little jokes that only we understand, and being more goofy than I ever knew I was, not only as my husband and partner in life, but in giving me my best friend, whom I cannot imagine living through this without.

So there are pockets or relief, and normalcy, as my community of women around me and the support system I am blessed to have are women I do life with and have truly walking this with me, and along with spending time with them and their kids or having them take me to do medical errands, appts, etc or other errands, we help each other out and help make each other's world's a little brighter and remind one another we are not alone (as we help each other fight our similar battles as I am technical now a stay-at-home wife and many of them are all stay-at-home moms.)

We're able to be a support to one another and along with being around these women, there are several other activities that are life-giving to me that are the fuel that keeps me living just in the day to day and having God lead and show me what He has for me that day. That is how I am going to get through this and if it weren't for those little things the Lord has given me, I do not know where I'd be.

But they and a handful of others I'm blessed to have in my life have reminded us and reminded me that this sucks. That this is unfair. And no, I am not going to go into all the good things that have come and will come in all of this because if you know me, you know I am not discounting or discrediting that or losing hope or perspective or my faith in God. You know that I am just being honest.

And I have needed to have friends there with me, whether it's spending three hours in the car crying with one of my good friends after she went to an appointment with me a couple weeks ago (as with Ben's new job, so he isn't taking off practically every day for various appointments I have, we prioritize them and I have friends or my mom come with me to ones where it's less crucial for both of us to be there).

But, one of the most powerful things happened when she came with me. She saw where I was before the appointment. She saw where I was after. She saw what happened during and her words could not have been more validating as we sat in the car literally in silence as I was fighting back the tears and just wanted her to drop me off and I would go cry on my own.

And she goes, “I don't even have words to even begin to describe what just happened. I just do not have words,” she said in disbelief.

And I was like, “NOW do you see why I STOPPED writing emails?!? like where do you even begin.”

Then she said some even MORE validating words I really needed to hear, words that made me think, hmm I should have had more people coming along to all of these appointments this whole time lol.

She looked me in the eye and said, “I mean, you really do not understand until you've experienced it.”

You just got the full effect, I told her.

As there have been some friends who have been there for parts of appointments, either at the beginning or end in the hospital or ER, but I just realized as she and I were able to process and she made me stop apologizing for my tears and reassured me I am not too much and to just let it all out, that besides my mom or Ben, no one up until three weeks ago when she came to a few of my appointments and tests, had ever really gotten the “full effect” of what we experience in nearly every appointment.

Couldn't believe it took 16 months to realize that, but nevertheless, I was grateful that it happened now.

As she echoed and reminded me, no, this is NOT fair. It is NOT fair you guys have to go through all of this.

I could not imagine doing this over and over for the last 16 months or what we would do in your situation, as she gave voice to one of the deepest wounds we have felt, how you really cannot say what you would do until you have been in someone's shoes because it's different till it happens to you.

What I have been most blessed by is how more than anything, more than advice, or people offering ways or things to do to help, people trying to fix you with this or that or making you feel like a project or charity case, more than anything what we all need more than anything is simply the gift of presence.

People to simply stand in the gap.

Get in there into the mire and the muck of it all and stand there with you.

Friends who live near and friends who live far away who regardless of distance or the different roles they each have played in all of this, friends who will walk beside you and simply be with you, knowing their job is not to theorize, over-spiritualize, or fix. But to simply be and sit and look around at the mess, to simply be there with you in your pain.

I have never valued the gift of presence more. As I have realized that is some of the strongest support we can give as well as receive.

Friends who have cried with us as well as rejoiced with us in the joys and victories that have come, yet friends who have not turned a blind eye from the reality that this is hard.

And that things are not supposed to be this way.

I am stunned by how no matter how hard we try some days, grief cannot escape it. It is like we are constantly swimming upstream day by day, by the end of each day, like a day like today, there are tears of, I just can't handle going through this anymore.

So, after a whole lot of crying and working through more of what today brought us and finally recovering and experiencing again that way that tears are so cathartic... then as I had plans to unwind the rest of the night while Ben went to bed earlier and as I was getting ready to go to bed, for whatever reason I decided to turn on my phone.

(Mondays are my least favorite as they are spent on the phone for at least the first half of the day setting up and following up on appointments and tests for the upcoming week and as today attested to yet AGAIN, going through more run around, having to jump more hoops, being on the phone with the insurance company, then this neurosurgeon, then two others, then getting our new neurologist or our latest neurologist I should say to order this and that exam in time for tomorrow and Wednesday and Thursdays appointments, but oh then this place says they can't order them, this guy has to, then having to call yet another and another, by the time it was 10:30 am, after 2 and ½ hours of this I was about ready to scream and chuck the phone against the wall.

Then, I'm finally okay again after taking the rest of the day off and going out and about running fun errands for me and doing things just for my life and it was a fabulous afternoon.

Ready to settle in for the night, grateful for God bringing us through yet another storm and being reminded of what a true gift we have been given in getting to share love and life together. Then, I turn on my phone, knowing I'd be safe since (at this point), it was 1:30 am, no calls from the docs should be blowing up my phone now...

Then I find a text from my mom.

I've been in one of those moods lately where I haven't wanted to write on here.

As my friend Hoops recently said it best, and gave voice to something I have (ironically) struggled to put into words...  “I'm a writer," he says. "[But] that doesn't mean I always like to write.” As he said and I can SO relate, which is by the way why I am writing these posts that normally I would write and save in a word doc and share when I have emotionally energy left to edit them, tonight, as has been a motto I've been living the last week, it's okay that life is messy right now.

It's okay that things are hard. Things are messy and that's okay.

It doesn't have to be perfect. With so many things in my life we are not even going to get INTO here and now, yet one of the biggest things I am learning to let go of and surrender all that I cannot control, change, or fix. With far too many things and issues I am not about to go into now.

Yet, tonight, it's messy. Doubt anyone will lose sleep over it, so for the sake of my heart that is about to burst, I am being obedient and letting it speak as there were things that have been churning deep for some time that were brought to the surface just moments ago. Things I have not wanted to write about, but things my soul wants to be said.

So this post started off with these paragraphs below, too tired and lazy to move them anywhere, but more on when I don't want/feel like I can write:

For two of the most common reasons I shy away from my blog most often, either there is so much going on I am going through enough just living it and processing with friends and my husband; or I am enjoying not a lot going on and the rare splices of normalcy moments in a day can afford and spend my time doing everything BUT being on the computer. Especially when the weather is nice out and I'm able to be out and about and do things and feel like some of my old self again, I just want to go out and LIVE, be anywhere but confined inside in front of a computer.

Then, I was going to write tonight about healing rain, the healing tears and crashing waves of grief we were hit with off and on over the last few days.

The moments where so much that is happening screams as reality collides again with the surface of our lives and we are left reeling with a pain that is just too real. Where we are literally stunned. Stunned, AGAIN, by the pain.

And the pangs of this is unfair, craving normal, jealousy, bitterness, resentment for being in this season. For going through something most couples will never have to face in their marriages, or it at all as so many have reminded us, something they go through at the END of their lives, when one is a caregiver for the other, when you get old.

Yet, being thrown into the thrust of that now, and how even just being around others like the other day when we were supposed to go see some friends, I realized I could not go because I would be triggered around them just where I was at that day. I can get triggered around other couples sometimes or when I feel judgment from others when I am feeling anger about the fact that even just being around them can be so hard for me because they have no idea what we're going through or what life looks like or is for us right now.

Couples either also newlyweds and in this so-called “honeymoon” period that for us lasted all of about our honeymoon to be exact, as I know many couples not just we have faced this, but not the day we arrived home were we thrust back into the reality of this intense, pressure-filled and ever-changing situation that was literally there ready and waiting to welcome us on our doorstep.

Our wedding day still stands out in a sharp contrast to what the days leading up to it and following it looked like. It seemed like a dream, if you would have told us even a week before what we'd experience that day, literally a day where there was next to no sign of this illness holding me down, we would have laughed in your faces. A day that even just a couple weeks leading up to it seemed like a complete joke as I had just been able to be out of the house at the max three hours at a time and had just been able to drive again for the first time in two and a half months.

Yet, the Lord blessed it, and a ton of people were praying, and it was a day filled with love, joy, and laughter and memories we will never forget and we couldn't believe it either, I will never forget the way Ben looked at me when we kept stealing glances once the worship began and I had joined him at the altar, we couldn't believe it was really happening and he could see from the minute I walked in the room, something that no one else but he could fully see, that I was really not in any pain. And our joy just on that sheer fact alone and that I made it down the aisle and was standing next to him then, in the fullness of my body being recovered or feeling healthy as I had felt for the first time since being sick, we were like those who had dreamed.

YET THEN, coming home is always hard for many couple, but we were met with another unexpected challenge. The "you should be better in 6-8 weeks" that culminated the week after the wedding, and the hopes that I really WAS getting better, all came crashing down again when I realized in being blessed with having so many WONDERFUL friends who helped out a ton the week of the wedding, running errands and doing last minute stuff at my place so I could follow the plan we made with our docs, for me to do and move as LITTLE as possible the week of so I could be able to do my wedding day, meant that I wasn't getting better, I had just been feeling good because of that week of not doing a lot (well, if you know me, sitting still isn't really my MO, so I DID do a lot, but let my peeps help me a ton), but then resting a ton on the honeymoon, it wasn't till I came back and tried to start getting back into my "normal" routine that things began to unravel again.

So with all of that and other things that are a part of the challenges of being a family dealing with chronic illness, I can feel it's unfair when we've been around other newlyweds who fight about things that are so stupid and ridiculous and have no idea what the world of hospital bills, insurance battles, dealing with upwards of 37 doctors at this point, dealing and living with chronic illness, what it's like for Ben as the caregiver for a spouse who is ill, how this has affected our relationships, what our community looks like, our jobs, our finances, our relationship with our families, our relationships with God... how it has touched and changed and affected EVERYTHING... yet, how they cannot even begin to comprehend it.

(And, yes this is not how I truly feel, we all know, WE and EVERY OTHER COUPLE fight about stupid and ridiculous things, it was just our interactions with a few that I have had to deal with my own anger, frustration and emotions in appropriate ways before I could handle interacting again.)

And don't even get me started on facebook, where it seems everyone has this pristine, picture perfect life that could not be any better and I know, I know, as many of my friends have heard me rant and rave and agreed with me on, we all know facebook is not an always accurate picture of reality, it can be superficial, and shows all the good we put out, but can hide the hard that we all know ALL of us face each and everyday, so I am not saying we are the only ones going through hard things.

As I have said before and I will say it again, LIFE IS HARD. I don't care who you are or what you're going through – NONE, not ONE of us is immune from the reality that sometimes life is just hard.

And I am not saying I do not do the same with what I choose to post or not post on there. I am just saying, sometimes, more often than not, facebook can be a really unhealthy trigger for me in this season and a place I do not feel safe to post or write or share things more than half of the time.

Okay, end of that diatribe ;)

So, many times with the unfair thing that has been affecting me recently, in all the turmoil of the last month I have been angry about how unfair I have felt that this battle is far from being over. The road seems to stretch out further and further just when it feels we are closer than ever before and seeing that hope on the horizon that an end to this season is coming.

A battle that reminds us, we are running a marathon.

Now, I should point out, I have not felt feelings of jealousy, bitterness, or “it's not fair” in this entire 16 months of dealing with this illness, relating to how hard it is to go through something other's have no idea what it is really like or being jealous of other couples who are moving on with their lives or our friends who get to do all these “normal” things we aren't able to do, little things from being able to take walks at night, to bigger things like us being able to move getting pushed back more and more as a result of the ever-rising costs of the medical attention I need daily to survive.

But, I have been struggling with it a lot in the last week for various reasons and we both have been experiencing a lot of grief and just wanting "normal" back so bad, which is why I haven't written about it till I could more appropriately process it other ways and I chose to not go with Ben to hang out with this couple simply because I wasn't in a good place at that moment since I was so triggered and sensitive at that moment, but this is not something I feel all the time.

But when the pain of the grief is so real. And there are things and events we plan on going to, then end up not being able to, or our lives are once again interrupted by crisis having to do with one of any of fires from this 20-headed monster, I know what I need in that moment in order to be okay and not to punish or hurt others for something that is not only not their fault, but something I do not wish WITH MY LIFE on anyone to have to also go through or experience, so I knew I needed space to let my heart bleed, be angry, and grieve.

So as I was saying, I didn't want to write about this tonight, as one of my core wounds not only in this current trial, but one that links to my childhood experiences is being misunderstood. It is not always safe for me to write on here, as words can so easily be misunderstood, but I am learning and fighting not letting others have so much control over me, my actions or my behavior, so I am trusting that this post is safe in anyone who reads it is someone who already knows my heart, but loves, encourages, and embraces the vulnerability I deeply value in being honest and being real.

So, all was well again, till grief again made its unwelcome appearance again, yet this time, the tears that emerged were only validating something I have embraced yet fight to embrace and still have trouble accepting, when I turned on my phone and found this text. 

-- CONTINUED IN... on death and dying: i will remember you --