Another Year

Yesterday was two years.

I feel the way I imagine a hiker lost in the woods does. You follow a direction, you're making good time, you might even be enjoying the fresh air and the world around you. You're scared, but you're pretty sure you're figuring it out. And then you see the tree you marked a few days ago and you're plunged right back into despair and terror.

I think, anyway. I've never been lost in the forest. But I've definitely been here before.

My natural response is to batten the hatches and hide. To curl up and hang on until taking a shower or grocery shopping or having a normal conversation with other people doesn't paralyze me with anxiety and the utter apathy lets up a little.

I've been told I'm strong.

I'm not.

I fake it, a lot. I feel it, every now and then. Mostly I'm just holding on by the skin of my teeth and I truly don't understand how everyone around me doesn't see it.

For me, being strong is action. It is taking the bull by the horns and wrestling it whichever way I want it to go. Strength is getting things done. It isn't crying every time the wind blows. It isn't hiding and staring at the walls and waiting for the storm to pass. But times like these, I just can't. It is all I can do to keep breathing, keep praying for light, keep my brain from going over all the mistakes I've made and will make again.

It isn't any easier yet.

I bounce back a little faster maybe. I know there will come a time of reprieve, when I will feel stronger, have more hope. Be able to pat myself on the back now and then.

I wish I had the strength to get back up right away. To trust in peace and security and all the things I know to be right in my little world.

See that's the thing that all the inspirational stories don't tell you. You may win the war but you will not win every battle. They gloss over the parts where you feel so broken and pathetic and awful that you wake up wishing you didn't. So maybe there is some strength in admitting that. Acknowledging that you won't always want to fight on, to keep going. That you won't always be able to. That you may get knocked down and lie in the dust awhile. You may get grimy. No one, especially yourself, will want to look at you. You will hurt and hurt and hurt and day by day you will try a little bit more.

Until you see that damn tree again.

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.