Spoons

I had seen this thing called The Spoon Theory all over the Internet for years before I finally one day decided to look it up. Basically,  the premise is that we begin each day with a certain number of spoons, everyone,  healthy people as well. But when you are chronically ill, be it physical, mental or emotional, you may begin each day with a limited number of spoons. And each task you  complete,  all the parts of daily life that are so often taken for granted,  costs you a spoon.

As my kidney disease has progressed,  and as I was plunged into the difficult work of grief, depression and ptsd, my spoons have been drastically reduced. And they cost me more. Right now I am struggling with what is most likely advanced endometriosis or adenomyosis and am scheduled for a hysterectomy next month. I'm hoping this will ease the chronic pelvic pain and dangerously heavy bleeding,  the awful pain of cysts constantly forming and rupturing, the flaring up of kidney issues with each cycle. By eliminating that problem,  I am hoping to gain some ground and get physically stronger. The mental agony will continue,  as I learn to live & work with my loss... especially as pain often begets depression,  anxiety and isolation. There are risks involved.  I may be plunged into early menopause if my remaining ovary fails to produce the hormones I need. (And won't that be fun on top of everything else?) But it's a risk I'm willing to take to try and gain more control over my life.

Right now,  I am extremely limited in what I can do, physically. Exertion means a steady spike in pain and possibly hemorrhaging. I am bedbound some days. Ok, many days. On the outside,  I look like a normal,  healthy person (sometimes). On the inside,  my life has become a study in compromise.  If I clean the house this morning,  it means I will most likely have to spend the remainder of the day resting. If I want to be social,  I have a time limit before my body starts screaming "ENOUGH!". Every mundane activity costs several spoons and if I am not careful, a deficit that will likely put me in the emergency room or stuck in bed for several days. I am on winter break from work and as much as I love what I do,  I've had to start coming to grips with the fact that I will no longer be able to have a physically demanding career.

A dream... of a small cafe, a commercial bakery,  a career in a field I have loved and excelled in for over 10 years... is dying. How that hurts. I've already had the life I knew upended and yet again,  here I am, trying to navigate and repair shattered pieces. I am preparing for a new career, one that will demand less from my body, and I am excited about it. Terrified,  nervous,  but still, excited. I'm going to have to start at the bottom all over again. Work my way up. Hope that I am good enough, that trading passion for better life balance won't break me further.

I have become exquisitely familiar with change.  I am becoming more adapt at rolling with it instead of giving into my natural instinct to fight it. To control. Control is such an illusion and such a difficult one to give up. 

Grandma

On January 6th, barring any new horrors my body decides to bestow upon me, I will be flying up to Idaho to visit my Grandma.  She will most likely not know who I am. I'm hoping that she may have a few moments of clarity and remember me, but I'm trying to keep my expectations low.

Alzhiemers and dementia have ravaged her mind and it's been a long time since she's been the beloved Grandmother I was blessed with growing up. But I am holding out hope that the special bond we shared may triumph,  even just a bit, and she will know me and let me curl up next to her and hold my hand.

My cousin lost her beloved Abuela this week and my heart hurts for her. She was a beautiful woman, a cuban matriarch that I remember as exotic and always so warm. Elena had the same relationship with her Abuela that I have with my grandma and I am deeply saddened to hear of her passing.

My Grandma Margie was from Missouri and moved to California with her family as  a teen. She was intelligent,  loving, fiercely independent and will always be one of my favorite people in the whole world. She loved and married a man who was not worthy of her, who cheated, lied and abandoned her. She was the single mother of 5 children whom she raised to be exemplary humans. She never spoke of my grandfather with hate, even though there was a lot of pain there. She simply said it was his loss, that she had her children and it was sad that he missed out on them. She never remarried.  I wish that she had found someone to love her as much as she deserved, but she had a happy life, full of grandchildren,  the fellowship of her church and a long career. I am her oldest granddaughter and some of my earliest memories are of playing dress up with her, singing along with her to her favorite hymns and old country western records. My brothers and I spent a lot of time with her. Our sleepovers were a staple of my childhood and teen years... we would put special conditioner on our hair, put on face masks & play at being beauticians. She was a fanciful dresser and her favorite color was a shocking fuschia, we would watch the Grand Ole Opry, The Golden Girls and her favorite westerns and I would paint her finger & toenails carefully for church in the morning. She loved to dance and we often pushed the couches to the walls in her living room and did aerobics and line dancing together. She secretly loved Melrose Place & if it wasn't too racey an episode, she would let me watch it with her. Her fridge was full of drawings from all her grandkids and as the years passed, great grandchildren. She loved music and played a variety of instruments. She would patiently listen to Ozzie play as he learned and heaped praise on him and ivy. She loved Jason as one of her own... he painted her bedroom a shocking lilac shade that she adored as a surprise one weekend and she never forgot to tell him how much she loved it. It was feminine and beautiful and matched her personality to a t. I lived with her for a few years, I think all of brothers and I did at some  point, a safe nest to begin our journeys into adulthood.

She loved me, always. Even when I was a naughty child, a difficult teen, an exhausted new mother... she always loved me. She always told me how special I was, smart and beautiful and encouraged me in whatever new passion I took up. I could do no wrong in her eyes, even if she didn't always approve of my choices.

She began to behave strangley a few years ago and it became apparent that she was suffering the cruelty of alzhiemers and dementia, slowly at first and then frighteningly fast. She was independent and sometimes proud to a fault and every new loss of independence was very, very hard on her and our family as a whole. She finally got to the point of needing round the clock care and as we were unable to find a suitable facility here to care for her,  she moved to a very nice place in Idaho,  near her oldest daughter. I've not seen her since she moved. I've tried to talk on the phone with her a few times,  but it is very difficult,  as she doesn't really know who I am. Once, in the middle of a conversation she exclaimed "Oh Valerie! " and it was so good to know she knew me again, even just a little.

But I've been a coward.  Watching her slip away from herself, especially after Jason's death... it is just too painful. I want my Grandma back, I want to curl into her soft arms and have her rock me as she did for so many years, always there when I needed her. I didn't know how to reconcile my memories with this illness that was taking her away from herself.  She was frightened,  all the time.  She was anxious and could quickly lash out physically when she felt threatened.  One day I stopped by to visit and she was on the phone,  talking with someone. I waved and waited in her living room but when I realized she wasn't talking anymore I went into the kitchen and put a hand on her back to say hello.  She had forgotten I was there, screamed and punched me in the face. It took several minutes before she realized it was me and then she cried and cried. I cried too, but I was able to make her laugh and calm her down a little.

I miss her so much. I am really looking forward to seeing her, she is in better spirits these days. (She's apparently been telling everyone that she is a famous country singer and I will gladly play out that dream with her. She deserves it.) I hope for a good visit without too much confusion.

Even though she is no longer here,  near me, I dread the day she moves on. I will no doubt hate myself for not calling,  not writing,  not being there for her. All I can hope for is that in the release of her spirit she will know how much I love her, how much I always will.

A Little Clarity

So, it's almost Christmas.  It's THAT time of year, the time when I want to just curl away and hide until spring,  when hopefully my emotions won't bubble quite so close to the surface and we'll be through the second year of missing Jason. A little more distance from all the pain that crashes into us, knocking away our breath and clinging to memories that hurt so much and at the same time feel so heavy and important and huge that they drag behind us like boulders attached to an ankle chain.

This year, I feel... different.  The wound is still very much fresh,  still bleeding over everything at times. But I feel just a little bit stronger. A little more accepting. A little more settled into the after instead of pushed down by the weight of before.

I still miss Jason.  My kids still miss their dad. Our friends and family still miss his presence... and I'm glad for that. Because he was a beautiful,  amazing person and he mattered. He will always ALWAYS matter.

Sometimes Ivy asks for a story at night before bed. I tell her about her father. The little things he did, the funny shared memories, the things he loved and the things he hated. She remembers most of it, but I will tell my children these stories until I die. Because they need them and I need to tell them. He is still,  and always will be, tethered to our hearts in this way. And every story weaves a new thread into that connection,  keeps it strong.

In the aftermath of Jason's death I became a single mother,  something I never ever wanted to be. Something I never thought I could be.  But life is life, and fair or not, I didn't get a choice.

You know what I've realized? I'm not alone. God willing, I will never be truly alone. My children and I have only grown closer and I pray that continues. 

But again,  I'm not really alone.

I'm so very lucky. Right now,  I'm hanging out with my boyfriend,  eating chinese takeout and having some much needed couple time. And the reason I can do that? I am incredibly lucky to have a strong support system.  My parents,  who I will never be able to repay for all the support and love they have given me, take care of my kids A LOT. Way more than they should have to. But they do it because they love my kids as much as they love me... and they are always there to pick me up when I falter. My brothers and sisters,  they will rush to my side at a moments notice.  They are willingly helping me to bear my pain with me and I can trust them with my children because I know they love them as much as I do. So many of our friends,  old and new, they help me whenever they can. My children not only have the blessing of a father who loved them unconditionally,  they have such great role models who selflessly help me guide them through these rocky times.

So yes, I am a single mom. But I'm not doing this alone. And someday,  I will get the chance to be the strong one for them. And I will do it with a heart brimming with the strength of love and family and friendship.

In this season of sorrow,  I am giving thanks. I love you all, so very much.  Even when I am mean and irritable and full of feeling sorry for myself... I thank you all so much. You are the reason I can do this.

Why I Keep Bringing Up Ferguson and Annoying Everyone

Because it's a horrifying miscarriage of justice and just a small example of racial inequality and police brutality IN 2014. NOT 1965, 2014.

Because black kids, ages 15-19, are 21 times more likely to be fataly shot by law enforcement than white kids in the same age group.

Because as a white woman,  if I'm wearing a hoodie and have my hands in my pockets, people just assume I am lazy and didn't shower that day (they would be right) and not that I have stolen something and/or are carrying a gun.

Because it's somehow ok for white people to own guns, 2nd amendment ya'll! But black people who own guns are obviously criminals.

Because self segregation still exists in most of the United States.

Because I live in a conservative area of California and I'm tired of hearing about how the people of Ferguson SHOULD respond to an obviously wrong grand jury decision. Yes, there should be personal responsibility. Yes, it would be better if people came together and supported and built up their communities. Because peaceful protest SHOULD WORK and sometimes it doesn't.  People get pissed. People make bad decisions. This doesn't negate the fact that an unarmed member of the community was following police instruction and was brutally murdered by an officer who took an oath to protect and serve. That, my friends, is still a fact... no many how much looting and burning occurs.

Because in the United States every citizen is innocent until PROVEN guilty. That is a unique facet of our justice system and a constitutional right that sets us apart. You know when that doesn't matter? When the person proven innocent or guilty is already dead.

Because Trayvon Martin was only 4 years older than my son when he was shot and killed for No. Fucking.  Reason.

Because.  Just,  because.

MSK, You're Breaking My Balls

Metaphorically,  of course.

So, I have a wonderful new primary care doctor.  I have mostly adequate pain management.  I have a good nephrologist and a so-so urologist.  I may get to be in a clinical trial soon that may help. My kidneys are not good candidates for the two experimental surgeries available for this condition and would most likely make things worse. I can't get a transplant because my body would most likely either reject it outright or begin calcifying the new one if it did take. Surviving on one kidney is a last resort for me, not something I want to contemplate. One day I may be on dialysis. I will do whatever I have to to stave that off, but it may happen.

Some days, I'm really good about my diet: no sugar, very little protein, nothing high oxalate.  I've given up my beloved tea and drink more water than should be humanly possible. I take a probiotic, am trying out some herbs that may help with keeping reoccurring infections at bay and choke down apple cider vinegar daily.

Some days,  I'm not so good about it. I still try to keep my sugar low and definitely no caffeine,  but the siren song of french fries are too much to resist. I snack on bacon at work. I can't force down another freaking banana.

I would eat better if I could cook more, but I feel mostly awful most of the time, so I don't cook much.  I struggle through work and then I try to lie very still for awhile so my body will calm down. Sometimes it works.  Often, it doesn't. 

I'm exhausted,  all the time.  I wake up exhausted. Exercise?  Yeah. I try to do some yoga. Occasionally I'll try to go for a walk. But everything hurts. And laying around makes it worse.

So the serpent swallows its tail and the cycle begins anew.

I do have good days. But, most of my time is spent carefully planning out my day so I don't have to do too much. And there is always too much to do, too many balls to juggle.  (See what I did there? Another balls reference.... badda bing!)

I hate this disease. I hate that I have it, I hate that I can no longer power through it. It's making me hate my own body and that is just not healthy.

I'm sure stress & grief are a big factor,  but there is not much I can do about that. I was pleased that after totalling my car this week I was able to center myself after only a few hours of sobbing and worked through a panic attack without drugs. My chiropractor/wise woman/awesome friend did some energy work on me and was really proud of how strong my center has become. 

But, I'm having flare ups every 2 to 3 weeks.  It is maddening.  I may be biased, but I think I deserve a little break.  Just one. Universe? God? Ya listening?  You've given me enough to handle for now.

Let's pump the breaks big guy, deal?

Grace

Telling our story is cathartic for me. So, when I find someone I can trust, I tell it. Over and over. I don't know why it helps,  but it's a little like letting some steam out of an always boiling pot.
Sometimes,  when I don't feel I can trust the person or when I simply don't feel like telling it all again. I give the abridged version: my husband got sick and he died.

Something I've had to try to come to terms with is how fast it all happened... and sometimes I wonder if people think he just gave up. It shouldn't matter, and it truly doesn't, but if it is someone who didn't know Jason it hurts to think that they might be thinking "Wow, he didn't even try?". To be completely honest, I've wondered that once or twice myself. But then I remember.

My husband was no quitter. He left a comfy corporate job to start his own company the very year that the housing market crashed. He didn't give up. He reworked his business model and thrived in a market when contractors were going belly up left and right.

He started working on his bachelors degree while working 70+ hours a week, with a depressive wife and two small babies at home. He didn't give up, he graduated with honors.

He overcame a few years period of addiction long before I met him, pulled himself up  by his bootstraps and didn't give up.

Whenever he picked up a new passion, he had incredible hyper focus until he mastered it. He learned and failed and sometimes got yelled at by his wife for neglecting family time and while he would sheepishly pull back and re prioritize, he did not give up.

He found poker when he connected with a group of old friends and found something that would be a true passion in his life. He studied game theory, applied it to both his game and business and quickly became a better and better player. He learned the wisdom of when to fold, when to bluff, when to go with gut instinct and when to choose analysis and odds over gut instinct. He was an excellent player and would sing me that terrible song "know when to hold em, know when to fold em..." and I would throw a dish towel at him and laugh.

When he was first diagnosed, he was ready to fight. Had the circumstances been any different,  he would have won a few more years at least. But as the horror of what was happening to his body increased daily, as we got more and more confirmation from the medical community that all pointed to the same end, he chose to fold. He made his decision and it went against his fighting spirit in every way. But, with the grace of someone far past his age and wisdom, he chose to let go.

I was, and still am, fiercely proud of him. I hope I can be half as gracious when my time comes. To me, he is a warrior... no less than those who battle for years, trying everything they can and enduring so much to simply stay alive.

He saw what could be and chose the path that he could live with for what remaining time he had.

So in this season of awareness, of celebrating survivors, of raising money for more education,  more research,  more more more... I raise a glass to the ones who could only choose to let go. To the ones who simply didn't get a chance to fight.
To you, my love.

Werk It

So, there have been some big changes at my workplace.  Corporate came in and cleaned house and none of us lowly grunts really knew what to expect. I miss my Chef Connie but I am proud that she is off to a new adventure.  I hope someday our paths cross and we can work together again.

So, before the semester began they changed the hours of my position,  baker, to a schedule that is impossible for me: 3am -11am. I could have done it, but I wouldn't be able to see my kids because I would have to go bed so early. This summer I've learned a lot about self care and one thing that I learned is that right now I need a lot more sleep than I used to. I used to be able to function on 5 or 6 hours of sleep,  no problem.  Now, I need 8 to 9 hours. Whether it's the medication I'm on, the depression,  the fact that my body is in a constant state of trying to heal itself or whatever... I don't know.  All I know is that I need my rest.

I also need balance.  I need time to be a mom, a lot of time to myself and time to be a student. I'm no longer interested in throwing myself 100 percent into a job that does nothing but take, take , take. I'm tired of constantly being stressed, overworked and grossly underpaid. Of staying late and coming in early and constantly coming to the rescue. I've no more to give. I love what I do and I'm good at it... but it's time for something new.And getting there requires time and energy. I am somewhat of an overachiever and a people pleaser.  No more. I work to live, not live to work.

So, I took the assistant baker position. It's 5am to 11:30 am (although I get a lot of extra hours whenever I want), so it allows me to keep my health insurance. It hurt to step down. It felt like a demotion,  like I was giving up my rightful place. My pride and my ego was bruised. But I felt it was the right decision.

Luckily,  my gut was right this time.  Not only that, but the man they hired to fill the baker position has turned out to be a gift from the universe. I was very nervous about having to work with someone new... I'm a bit of a lone wolf and I like to do things a certain way. I work clean.  I am very organized and don't tolerate mess or chaos very well. I can be a hard person to work with,  it's something I'm working on, being less rigid in the way I do things, but the way I work is what has made me successful. Surprisingly,  he and I have the same outlook & philosophy on baking & pastry. We work great as a team and he has made it very clear from day one that we are equals. I learn from him and he learns from me. We are making great strides in making our production more efficient and working as a team allows us both the opportunity to try new recipes, make more scratch goodies and really take control of our department. I'm actually really happy with the way its going, though our kitchen as a whole is struggling a little to adjust to the new ways of doing things.

But it has been a good thing for me so far. Working as a team is new to me, but it feels good. It takes a lot of the pressure off. I'm home in time to rest up a bit, do a little  house cleaning (sometimes), pick my kids up and be more present... or trying at least.

So far, I'm good.  I'm rolling with the changes. Although I'm still pretty upset about the no facial piercings rule.... switching out nose rings all the time is a drag.

Talking to the Wind

Today, as I was folding laundry in my room, I felt the pinpricks of tears, the sadness start to well up. So, I did something I've decided I am going to do when the need strikes: I went to talk to my husband. 

Some people have grave sites to  visit, we don't.  We have a lovely urn picked out that looks just like a beautiful galaxy... a perfect place for his ashes. But for me, talking to a bottle of ashes feels silly. He's not there for me.

There is a spot on our farm where I can sit and look out at the field, the sky, the hawks and trees and feel the wind. I sat there for a long time on the day he died. It is,  forever whatever reason, where I feel he can hear me. And no one else can hear me. Scream, sometimes.  Cry, mostly. Tell him how much I miss him and love him and beg for help to get through one more day. To tell him how much the week sucked or how we've acquired yet another animal or how much his son is looking more and more like him and how much his daughter misses him, even if she can't say it.
How I hope he's ok, at peace. How much I want him to be free and how much I wish I could feel him, one more time.

It's a little strange, because that hill is a mess of weeds, tall grasses and anthills. But that spot, my spot, remains bare. Waiting when I need it.

Scared

I am just feeling like a big mess. A big, raw puddle of nerves, sadness, pain, longing and despair.  I am not ready to work. I'm not ready to pretend to be ok. I am terrified and I hurt, all the god damn  time. I feel crazy. I feel small. Incapable. Useless. Terrified. 

I visited my brother's church today. I sobbed through all of the songs... they all reminded me of him.

I don't know how to be alive anymore. I hate waking up in the morning.  The only peace I feel is at night, when the darkness matches my mood. 

My kids start school tomorrow. I start work Tuesday. I see my pain management doctor friday. My soul is pleading: Please let me be ok. Please let me handle it. Please let me find a routine again.  Please help me keep my kids safe and happy.

I'm surrounded by love and support and I still feel so alone. So lost. So broken. 

Please. Just, please.

All The Things

Summer is almost over. So far, here is how mine has gone:

80 bazillion trips to the emergency room.

Days upon days of laying in bed, or, if I'm feeling especially sassy, laying on the couch.

Complete and total nervous breakdown.

Cycling through doctors who a.) Don't believe me b.) Don't care to try and help me and c.) Think that I enjoy birthing a stalactite through my pee hole every two weeks.

Battling suicidal thoughts. Like, daily. The internal monolouge telling me that I am a waste of space,  worthless and undeserving of grace is loud and terrifying.

Isolating myself from the people I love, simply because I can't even stand to be in my own skin.

Constantly having to break the few plans I did try to make because the angry weasels that live in my kidneys decided it was time to party.

Gaining weight while simultaneously having absolutely no appetite.

Doing absolutely none of the projects or creative pursuits that I was looking forward to getting done.

Becoming increasingly agoraphobic, to the point that going anywhere by myself is extremely difficult.

Yeah. Things aren't good, but there are good things happening.  I enrolled in and will start college classes in a few weeks.  I'm double majoring in hospitality management and health care administration. I have 28 classes to go until I get a piece of paper that I hope will allow me to be self sufficient and maybe not have to spend 16 hours a day on my feet.

I'm in outpatient psychiatric care with a team of people who are really helping me to face & deal with the emotional trauma I've experienced. It is helping, little by little.

I've found at least one doctor who is compassionate,  caring and seems excited to learn more about the disease I have. Though he is limited in what he can do for me, he has gone to bat for me and pushed through red tape to help me get the care I need.  

My relationships with my family have grown even stronger. My kids are ok. I am honest with them about how much I am struggling & hope I am setting an example for them in self care and growth. I'm leaning heavily on the help I have.

So this is where I am at. I know I am alienating people,  people who only want me to be ok. But I can't - and won't - pretend.  I am not ok. I will be someday and that someday may be in a year or it may be in 10 years.

40th

Tomorrow Jason would have turned 40.

I miss him so much. I don't know what to do... how do you celebrate a life cut too short? How do you give the day meaning when that person is no longer there?

He never liked fuss. Never wanted a big to-do, though I always ignored him and did it anyway. Secretly,  he liked it. He was just like that, stoic.

So I will cry again. I will lament & wail & weep and hope that in the years to come celebration may outweigh despair,  even just a little.

Walking Through Grief

I'll be honest.

For a while there, I thought I had it figured out. Under control. I was sad, anxious and terrified all of the time, but as long as I didn't open up too much, didn't dig very far beneath the surface,  I was ok. Managing.

When Jason was ripped out of our lives,  I lost myself. But I thought one day, she would just magically come back. That fog of shock kept me putting one foot in front of the other. At first I did everything you're "supposed " to do. Therapy.  Support groups. Writing.  Talking it out.

But the pain doesn't end. It mutates, endlessly evolving faster than my feeble brain could keep up. And after awhile,  my natural defense mechanisms  kicked in.

Put up the walls. Slide on the mask. Pretend everything is ok. Don't give into the tears, the fury, the raw agonizing pain. Just keep going. The less I thought about him, the more I refused to let myself feel... the harder it became to feel anything.

And then, 16 months from the death of my love, my best friend, my missing piece,  the cracks began to emerge. Panic attacks.  Nightmares.  Flashes of memories buried away, so painful I literally gasp for air and sob.

Terrifying thoughts. An overwhelming desire to not have to feel anything, no matter the cost. Overwhelming exhaustion.  I find myself inert. Unable to move, no interest in anything beyond the walls of my bedroom. Hiding from the world. A phone call takes too much energy, a trip to the grocery store requires days of psyching myself up. I don't like leaving my house. I don't want to talk to anyone. How can I explain the enormity of the pain? How can anyone even care?

I barricade myself. I don't care if my kids rot thier brains playing video games all summer... at least then I know they are safe. Safe in our sad house.

It doesn't help. The pain bubbles through. I'm cracking, crumbling and I am lost. It's all too real. Why now? Why do I feel worse now than the day he died?

Because it's hitting me. He's gone. Forever. This nightmare happened and nothing I do will ever make it right. It will always be wrong, there will always be someone missing.

There is no way to get around this. No way to slip through. If I want to heal, accept and let go... I have to feel this. I have to walk through it. I have to mourn. I have to face the hand I've been dealt. I have to fight.

I am lucky. I have a lot of people who love me. And I'm letting go and accepting help. I have to put my hands in the air and surrender to the pain, lean into it. I hate it. I hate everything right now.

But I'm going to do the work.  Wish me luck.

Rain, Rain

I am heavy. Heavy heart, heavy mind. Wallowing,  probably. Fighting,  definitely.  I thought surely the sadness, the bleakness that I felt after Jason died was unbearable... that it was the worst I could possibly feel.

Little did I know that despondency,  utter & raw grief,  does not relent. It lays in wait, threatening to envelop me at every turn. For every step I take toward acceptance I am pushed back into this numb, apathetic - actually, pathetic - state of despair. 

It is maudlin,  coarse. It is making me rough. It does not stop. There is no relief in the bottle or the pill, it sucks the joy from me every single day. I cannot lose myself in anything anymore. 

I wonder if it will kill me. It feels as though it must. Surely this much pain cannot be borne without consequence. 

Breathe. Open your eyes. Count out your hollow blessings. Someday it won't ache so much. Someday you will be free. Someday you won't want to disappear anymore. Someday you will live again.

Keep pretending.  Keep imitating life. Keep your small hopes burning.  Keep feeling the hurt.

16 Months

I read a blog post earlier today written by a man who has just been diagnosed with stage four lung cancer. It was well written, heartbreaking and utterly familiar.

He spoke of clarity... the unique & brutal shift of perception that occurs when you face your own mortality. The things that matter,  the shift of things that fall away, suddenly completely inconsequential.

How easy it is to forget that shift. How easy it is to let the crap pile back up, to let the little stuff start to matter again. How quickly the big picture becomes more important than the day to day. How easy it is to not be present.

Being present means no irritation with slowness. No "just get through this drive with your family and then you can get back to all the other crap that occupies your days". Your brain. Your life.

Being present is letting that stuff go. It'll be there later, it always is.

I haven't had clarity in awhile. I haven't been present in even longer. If anything I've spent most of my time actively avoiding it. The big picture stuff clouds my brain too easily. It gets to be too much and then I shut down completely in inaction,  paralyzed by the enormity of my responsibilities and needs.

What is important is every day.  Are my children safe & fed? Are they happy? Did we have a good conversation today? Did they let me into their head, do I feel calmed? Knowing they are growing and thinking and learning and coping?

We've passed our second awful father's day. It was less  brutal this time. There were tears, there was emptiness... but there was also joy. And memories.  And love.

It is still so hard to look at pictures. And I wish I would have taken one every single day.  I have some,  from near the end, that no one will ever see but me and our children,  when they are older. They are  still beautiful,  but I can't bear to look at them now... just like Jason could not bear to look in the mirror for long at the end. My heart swells with love and longing and pure pain when I am reminded of the man I lost and love still.

There is a shift happening,  something that comforts and scares me at times.  I dream about Jason,  a lot.  In most of these dreams he is healthy and smiling, quietly watching. Nobody sees him but me. Sometimes he comes back to me, but only to tell me he is sorry for being gone so long, that everything is ok. He gives me a thumbs up ad his goofy smile a lot. He never actually speaks, but I hear his voice in my head. I remember these dreams when I wake up, in detail. I am choosing to take this as a sign that he is ok. That he is happy for me and loves me always. I don't really know or care if it is a gift from beyond or a figment of my subconscious mind... I'm taking some small comfort from it. It's all I have.

I am not fine,  not healed.  I never will be completely.  But I am moving forward. At a snails pace maybe, and with many stumbles in the road. But I'm still going.

Mother's Day

I have been very, very busy. Which is all good, until it isn't. With life marching on at a whirlwind pace I've been pushing down sadness and putting off grief... and grief is something that won't wait for a convenient time to knock you down.

This is my second mother's day as a single mom. And I honestly forgot it was even coming up. Working in the world of food service has usually meant I am at work on that day anyway, as I will be on this one. The kids were asking me what I wanted this morning and I told them  I don't want anything (except for them to clean the house, which was met with uproarious laughter) ... but that isn't quite true. I want them to have their father. I want him to see how strong they are, how compassionate they've become. I want him to be there when they succeed and when they fail. When they need a hug or a stern talking to.

That is impossible now and it breaks my heart.

I miss Jason so much. I've had a particularly bad day, crying in my room. Feeling lonely and abandoned and pitiful and angry. Because sometimes those moments hit and I just have to roll with it. I just have to let it happen. I don't need to fix it, but when it hurts like this it is hard to share. Hard to ask for help, hard to talk it out. I have my people, who let me be and lift me up. Remind me I'm doing it and that this is healing and sometimes it ain't pretty.

Most of all, I have my son and my daughter.  I get to be their mom. I get to remember the moment they were born, that amazing terrifying larger than life moment when your heart expands and your world recenters itself on the little being in your arms, created out of your love. All the boo boo's I've fixed,  all the times I've wanted to tear my hair out and ask the universe who exactly thought it would be a good idea for me to be in charge of raising healthy, happy kids to be healthy,  happy adults. I get to see my husband every day... in his son's laughter, in his daughter's logical thinking. I get to remind them they had a dad who loved them more than anything and tell them all about him. I get to remember him through them. If I do it right, they will feel him in their hearts as long as they live.

That is my gift from him.

Pain

I mentioned in my last post the health problems I've been having. They aren't letting up,  and I'm not handling it well. After a nightmare pain episode I ended up in the emergency room again last week, convinced my kidney was shutting down or I had a stone stuck. The Dr, a fellow "stone maker" had the mercy to give me a stronger pain medication,  but didn't order additional tests because the pain & symptoms I was having are typical for a person with chronic kidney stones.  I emailed my new urologist,  who is on vacation,  and pleaded to be seen by someone sooner. So, Thursday,  my mom took me to see a different urologist in the same office.

I read up on him. His specialty is in men's health and sexual dysfunction.  I had a bad feeling that my lack of penis might be an issue.

He pulled up a month old ct scan (this is important because I have literally had xray's a week apart showing no stones/10 stones.... that's how fast I make them) and told me that while I may have stones in my kidney, there is no possible way they are causing me pain. He told me that just isn't possible,  and sometimes people have unexplainable chronic pain that nothing can be done about. He referred me to pain management and suggested I need counseling.  (Yes, I know. That is why I see a therapist,  a psychiatrist and participate in two different support groups. Thanks though. )

He humiliated me, invalidated my pain and made me feel like a drug seeker. And the sad part? This is a common reaction from doctors who are unfamiliar with a condition or who encounter a patient who doesn't present with textbook like symptoms- and are too busy or self important to consider that just because something is outside their realm of experience, does not mean that it isn't real and it isn't treatable.

My life is hell right now. It hurts to move... and that makes everything so much harder. He may be right, stress may be exacerbating my condition,  but I'm doing everything in my power to try and keep moving forward. I need help. I need a doctor who, even if they don't understand,  is willing to research, do tests and try whatever works so that I can have a productive life.

I'm terrified I'm never going to find that. That I will be given pills to cope and then punished, looked down on, for needing to take them. That this will get worse and worse until I am bedridden or can no longer cope with the pain and take drastic measures.

I never thought I would be 34 years old and feel like I was 80... happy if I can make it through an entire shift at work just to come home and lay perfectly still until the pain (hopefully) abates enough to allow me to make dinner & help with homework.

I certainly didn't need another battle, but I guess I get one anyway.

The Veil

I have a birth defect called Medullary Sponge Kidney Disease.  Plain and simple it means I make kidney stones. A lot. I've lost count of the number I've passed, but it has to be upwards of 50 at this point. At any given moment I have no less than 20 stones in each of my kidneys. I also have a lot of scar tissue, some kidney and bladder damage and daily pain. It is hard to live with and I've had to fight tooth and nail to A. Get diagnosed and B. Find medical professionals who are at all familiar with the disease. I need pain management more often than I don't and I've dealt with several doctors thinking I was just a drug seeker. I'm currently on track to have a procedure done that would clean out my kidneys and hopefully offer me between 10 and 15 years of relief. I have to be patient and jump through some hoops, but I'm very hopeful I can live a more normal life sometime soon.

Sunday night I ended up in the emergency room in uncontrollable pain... the second time my boyfriend has had to take me. I'm very thankful for my man, who doesn't flinch as I throw up into an emesis bag and still manages to think I'm cute. Luckily, they know my case now and I was in, pumped full of extremely strong drugs, x-rayed and sent home with stronger pain meds.
And, as has become more usual, I had one of the dreams.

It usually happens when I am in between dreaming and waking. I hear a noise and I start to think that it's Jason. He's home! Part of my brain tells me no, that isn't possible.  But the other part of my brain says what if it is? What if he's just been gone for awhile and him dying was just a nightmare.  Sometimes it will be a phone call, him telling me he's sorry for being gone for so long. I start to get scared. I don't know what is real, and what isn't.  By the time I wake up fully I know it was just a dream. But for a few, terrifying minutes I honestly don't know.  It usually happens when I'm in a lot of pain or under a lot of stress,  but the emotional upheaval upon waking shakes me up for days.

I've not had any of the "visiting" dreams that many people say they have when a loved one dies. Maybe I never will.These dreams feel like nothing more than the longings of a broken heart.

Words

I've always been a good researcher. Colleges?  (None of which I could afford or decide upon.) Check. Pregnancy? I read every book, blog & babycenter.com article I could get my hands on. Parenting? I read my Hip Mama's Guide to Teenagers 2 years ago, just as my oldest started to reach adolescence. I've read relationship books and self help tomes and books about spirituality. I have a veritable library of DIY & crafting books and can tell you all the steps that go into making a homemade rag rug (not that I've actually, you know, made one.). Cancer hit too quickly for me to do much reading but I devoured every caregiving/end of life care article my brain could manage to absorb. Widowhood & single parenting I've been able to delve into, as evidenced by the stack of books in my room with titles such as Parenting the Grieving Child, Lost Fathers: Helping Women Overcome Adolescent Father Loss, Widows Wear Stillettos and Wife, Interupted. I've spent way too much on books for my kids about grief and workbooks for all of us to work through should we ever decide to do so. Tips and tricks and how-to's, I hoard them like a dragons gold.

I have this compulsion that makes me think if I read everything I can about something,  I will be in control. Sometimes,  it really does help. Much of the time it just leaves me feeling simply inadequate.

A big part of this is fear. You may not be able to tell now, but I was extremely shy as a kid. I had a hard time feeling like I was good enough... I always felt like the outsider. Books were my refuge and gathering knowledge became a source of power. I would panic and say the wrong thing in real life, but in my own private world...  I knew things. I understood. Its always been the application of knowledge that has been difficult for me.

So, I've read all of these books, blogs, forum postings and articles about losing your husband. And many of the books, especially, end with a focus on self discovery. Whether it be a successful new career, advocacy or some other way of turning the pain of losing the one you love -and with it, a huge part of yourself- into something positive.  A new direction, a newfound strength. A purpose. And I finish each one and think What is wrong with me? Why am I still overwhelmed,  still so fragile? Why haven't I been inspired to do something great? Sonething Ellen Show worthy? What if that never happens to me and I end up just... stuck?

It boils down to my impatience for the vantage of time. I forget that these writers are writing after years of living with their new reality. Sure, maybe a few found the dedication and energy to pursue something new right away... but for most people it takes years. It takes time... of living in the trenches, of sitting with the loneliness,  of embracing the sadness. And I'm still there.

I'm still expecting the old me to come back. I'm still fighting the soul sucking, mind warping, judgement clouding black cloud that hangs above, always an inch away from a downpour. I still experience nerve shredding anxiety attacks. No longer daily, but often enough. I'm still exhausted,  physically and mentally,  all of the time. I'm still raw.

I wish I believed in myself enough to embrace the patience that I need to heal. I want to be good. NOW. And  I'm just Ok. It has to be enough. I'm doing my best, some days. Many days I'm just going through the motions,  putting on the mask and pretending to be better than I am. For now, that has to be enough.

14 Years

What does it feel like to be a widow on your wedding anniversary?  Well, it just plain hurts. And it's very lonely. 

The one person who cared about that date, a date I will never forget,  a date I was always so proud of us for reaching each new year... well, that person isn't here to celebrate with anymore. Even if it was just a card on my pillow before bed and a few moments of congratulating ourselves for making it so long, a few moments to marvel at how much we still loved & wanted one another... that is gone. It's just me and my memories now and that just isn't enough.

This is my second anniversary since Jason died. But the first one was so close to his death that I was numb. Foggy. I don't really remember much. I didn't have any of that anticipatory grief this time, just a moment a few days ago of "Oh. Yeah. That's happening." Work kept me busy today until, driving home, I felt the weight of grief slam me in the chest.

This day should be SPECIAL. My marriage was one of the few things I've done right. It may be the only marriage I ever have. And I miss him, so, so very much. But now its just another reminder of what I've lost.

Maybe in a another year or two I can celebrate.  But today I just feel alone. Alone and hurting.

Year One

Well, we made it. Monday was the one year mark of Jason's death. I wish I could say I felt better, but mostly I'm just relieved... we made it one year, we can make it another, right? No matter what happens,  we will keep living. And loving and missing him. The biggest lesson I've learned from all this is that the world doesn't stop turning, even when your world ends.

On Monday I took the kids to Santa Cruz and we ended up at a beach Jason & I visted together when we first met. I wrote him a letter and sealed it in a bottle and set it out to sea. Then, we climbed up some cliffs overlooking the ocean and sprinkled some of his ashes. The other beachgoers pretended not to notice as we sat, huddled under a blanket and sobbing, watching the sunset.

Then, we went and got mint chip ice cream cones (Jason's favorite) for dinner.

I go back to work tomorrow. I'm nervous, just because its been awhile, but ready. I miss my job and my work family.

I need to get my carpets cleaned and sign my kids up for tae kwon do. I need to do my taxes and bug my kids about cleaning their room. I really need to get back on my diet and schedule a ladies night with my girlfriends.

Life goes on, even with gaping holes and broken hearts.

Here we go.

To Jason

Today,  I let myself actually miss you. Truly, I miss you all the time... but I push it away, because that longing quickly becomes way too much and it overwhelms me still.

But today, well, I'm a mess anyway.  I have a nasty cold, I can't remember the last time I took a shower, I leave the house only if I absolutely have to. I've worn nothing but pajamas.... even to see my new doctor. I sit and stare when I try to work on things, my attention span is laughable.  So today, I layed in bed "reading" and I thought about you.

And it hurt. It really, really hurts. The farther we get from the day you died, the more surreal the nightmare seems. You are so far away from me, shrouded in a protective layer of fog. But I can glimpse your smile in my memory now. It makes me cry when I think about your laugh. I don't allow myself to wish you were here because you just aren't- you never will be again- and I'm not strong enough to think about what might have been. I'm too busy trying to grasp this new reality.

We are doing ok. We are all struggling, in our own way, but we talk about you all the time. It keeps you near. I look at your picture every day.  You were so beautiful and I loved you so, so much. Your babies love you so much and they miss you terribly.  But we are making small strides. We are keeping it together, trying to move forward.

I keep thinking that one of these days I am going to wake up and "be myself" again but I'm slowly accepting that that isn't the entirety of me anymore. She was your wife, you were her husband and you held the moon and stars. That part of me has to be quiet now, she has to sit down and let the tougher parts of me emerge. Sometimes I sink down and she rises up, wailing. Maybe she just needs to for awhile,  so the other parts of me can recharge. (I know I sound crazy. I am.)

I missed you today. I love you always.

Messy

January 17th marked 11 months since Jason's death. The 19th was my birthday and despite a fun filled weekend,  I spent a good portion of the day sobbing. My mom won tickets to see Justin Timberlake and we didn't go. We both felt lousy. Greg came over, we bbq'd steaks, drank a few beers and I went to bed early.

You see, despite trying to distract myself (which worked somewhat... we had a lovely time, honestly) all of a sudden I heard a song that was playing in the car the day they did Jason's "exploratory" surgery and that was that. I couldn't stop thinking about that day. After a failed colonoscopy,  he was directly admitted to the hospital across the street but he refused to take an ambulance when he could very easily get in the car and have me drive 45 seconds to the hospital. We got in the car, him still woozy, and he made me pull over. "Lets take a minute" He said. We listened to the song and then he told me that while he was under, whatever they found, he trusted me to make the right decision, but he didn't want surgery twice. "If there is something in there, just tell them to get it out. I have too much going on, I can't be layed up for weeks." He was still in charge, still so vital... despite being in exhaustive pain all the time. We held each other, foreheads pressed together, whispering things that neither of us wanted to hear. He was scared. I was terrified, but I went into caregiver mode immediately, building him up, joking about sneaking him in a homemade cheeseburger once he was out of surgery.  He would never eat one of my meals again. We would never make love again. He slipped from me like he was drowning in quicksand... slowly and much too swiftly,  all at the same time, while I watched helpless from the shore.

I'm a mess right now.  My kids are a mess. My house is a mess. My Grandma Margie's dementia has progressed to the point that she can no longer be cared for in her home and she is moving to Idaho to be cared for in a (hopefully) expert facility that will give her the qaulity of life we can no longer give her. I know it is the best thing for her, but it's breaking my heart.

She is and has always been a huge part of my life. Every dance recital, every game my brothers played... she was there. Her home has always been my second home... watching Golden Girls and Grand Ol Opry at her house was a mainstay of my childhood.  She would tell us stories about growing up in Missouri,  make up bedtime adventure stories starring us that topped any book we were reading. She let me decorate her checks during church and her jewelry collection was my toy chest, dressing up in her snazzy dresses from the 60's. I lived with her for two years after high school and she was the best roomate I ever had. We would drink our coffee in the morning and she would pretend not to notice that I had been out till 3am the night before.  She is a sweet and fiery old bird, a fiercely independent woman who raised 5 incredible children all on her own in a time when that was just not done. She does not deserve what her brain is doing to her and it is horrifying to watch. I am terrified that the next time I see her, she will not know me anymore.

So this  is another of those ride it out times. Forgive me if I cancel plans and don't answer texts. I'm over here, gritting my teeth and just getting through the day. But I've been here before, and if I've learned anything from this last year it's that I will make it through.  Maybe not with grace, and not without some fresh scars, but I'll be there on the other side.

Writing Your Dreams

Ozzie had a really bad dream last night. The kind that wakes you up in terror, sweaty & shaking.  I sat with him,  holding his hand until he went back to sleep... and the dream came again.  And then it came again when he tried to take a nap later.

He's had a heavy heart the past week or so. He is acutely aware of what was happening this time last year and he is dreading his birthday,  which is just 3 says before his dad died.

We talked about his feelings and memories... the helplessness and terror he felt watching his beloved daddy slip away. How cheated he feels. How it just isn't fair.

But talking it out-while essential- just hasn't been enough to give his dreaming brain a rest. So, I thought we could try something different.

We went through the aspects of the dream, but we replaced each negative, scary thought with something positive.  Being chased in a dark room became a walk in the forest, enjoying the sights and sounds. A skeletal Jason collapsing in a heap became a healthy Jason, opening up his arms for a big hug and surrounded by light.

I had him close his eyes and take slow, deep breathes as we went over the new dream together. He is keeping it under his pillow in case he needs to find himself in that safe place again.  So far, it's working.

Bursting

I have been having a weird thing happen lately. I will be going about my day and suddenly my heart is beating too fast. My breath catches. There is a pounding in my ears and an overwhelming wave of panic hits me. Every time, the same phrase comes into my mind: Where is he?

It doesn't matter, really. He's not here. And suddenly the tears come, the ache settles in my chest and it all hits me, again and again.

Not Here.
NOT. HERE.

I talk about him all the time. With my kids, my family,  my friends. I cry and talk about him with my (endlessly patient, amazingly wonderful) boyfriend. With my therapist. With the women in my support group. With complete strangers, who somehow manage to touch upon a subject that brings him to mind.

I talk about him joyfully. I talk about him with awe. I talk about him while my mending heart breaks again, bleeds a little more.

As the one year mark of his death gets closer, I get flashbacks of this time last year. I think of all the things I could have... should have... done differently. I think about all of the moments we stole before he slipped away.

And I still hear it, every time. Where is he?