Confused Tranquility

I
I can reach
I
I can’t touch the stars
the chase, it races on, right through my mind
lay, in wait well I
living in past moments is all that I
confusing stale notions left to ponder what they really are
every passing moment in the hole another day in eternal hell
fuzzy memories seem only within my head
and these feelings are emotions that I never really had

though I want it
might not have it
left to wander
I can’t tame it
this ceiling isn’t really where they are

I
I can hear
I don’t really ever know just where they are
I
I can feel
I can touch the boundary of every lasting surface scar
eternal mass confusion, it paces right on through my heart
every passing moment I don’t know what they really are
every second here without tears makes me wonder about my head
and these echos focus into words I never really heard

though I want to
might not have to
left to wander
I can’t claim to
this ceiling isn’t really where they are

my
my mind implodes
empty tear-drops, emotion that I never really tread
chasing all these demons that I’ve never feared
these tears aren’t real, it’s a feeling that I’ve never had
and these moments aren’t for real, they’re not contained within my head

Though I want to
Though I’d love to
Though I try to
Though I’d die to
maybe it’s just something I can never really have

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Pushing Forward Back

It will likely be a night or 2 of lacklustre sleep, as I attempt to mentally prepare to return to the hospital. This time it is all a lot different. This time it is scheduled. An observation period. Time to see how I am progressing. Everything in my heart and soul says this is going to be a great visit…encouraging…optimistic…a way to ease tensions. At the same time I am not exactly on an ideal run, so it does make my mind race…what if it doesn’t turn out well…what if they find something….it is worrisome, even within my heightened confidence.

It has been a great week or so, and I feel ready to take new steps, and have. You know, I decided to read back through my blog here. I must admit that I was fairly shocked reading it at times. It made me giggle a bit and it brought some tears to my eyes. I pondered if it was truly helping me, and I think it is…a place to just sorta blab…to clear my mind a bit. I road some of the dark hours again and I smiled at the memory of others. It made me realize how fortunate I am in those that patiently surround my life, and how a little effort and a lot of luck has guided me, and that even in the darkest hours I do my best to find some sort of positive spin…a grand outlook to chase at the end of the tunnel.

Being out of the hospital, we are being a full family again…we’ve battled things, and now we are concentrating on just relaxing a bit and enjoying some good times. Often my mind races to some future concerns…I have some surgeries upcoming at one point or another, and my future Leukaemia treatment is still unknown…but here and now I am happy…we are happy. I actually feel really really good…like the best I have most the year! I find myself energized being out…being with my family…inspired to push myself as far as I can. Heck…I can push myself up to my feet against a wall now, I can stand after that, and I can take a few steps. Maybe it is the excitement of being out and with my family…maybe it is adrenaline…don’t really care…it has been great! My goal for the end of the year is to be able to hop. That seems like a mountain climb away right now, but fuck it…imma get there…why….because I said so.

I think mentally and emotionally I am in a place I haven’t been in ages to. My husband and I have had extended conversations about the condition and the time I was asleep…something that we really hadn’t before…that I couldn’t. He shared bits of conversations, and little things they did while I was asleep. From medical procedures to going outside of his comfort zone and trying to play music from the suggestion of some friends. He talked about trying not to cry at my bedside, to the first time I had visitors, to the concerns of my lack of response when I awoke and initial thoughts that I had lost a great deal of mental capacity. He told me about the day that I woke up and the fact that the skies erupted like a sign from a greater power as I did. I have always loved the raw nature of a storm, and I guess the timing was uncanny. He told me about about my essentially non responsive state when I woke, being knocked out by the docs and coming to in the morning with some life and pure confusion. I didn’t remember any of that. That I contacted a few people as best I could. I didn’t remember that either. That I really only asked about going home the first day. I don’t remember any of that. I shared with him my memories…waking and freaking from the tube and not knowing what was going on and just panicking…then really nothing for what I guess was a few days. I don’t know if when I freaked out was the day I woke up and was unresponsive or the next day. I don’t remember any of it. We shared some laughs about some things along the way after that…we shared some tears…he held me close and I was just constantly reminded why I know I am the luckiest girl on earth.

Right here and now…life is great.
I don’t know what tomorrow will bring, at all, and that is a bit scary.
It doesn’t matter, because these are moments to cherish…these are moments to hold forevermore.

Dark clouds and rainbows

My husband is my foundation. He keeps me stable. I have often said that he saves me from myself and helps me be me at the same time. We are a bit of a ying fang fit…opposition balancing in harmonic unity. He keeps my feet closer to earth, and I force him out of his shell. I can’t imagine being with someone else, and I can’t imagine not having each other.

A lot of people have looked at us and said we seem so in harmony…that we are a perfect fit….the perfect couple…etc etc etc…but I tell my friends, and now I tell anyone who might happen to read this…it doesn’t just fall in your lap and you have to work for it.

When we got engaged, we got what I thought was a rather unusual gift, and wasn’t entirely sure how to take it, though it was explained a bit so we said….ok…thanks. Since then we have said it was the best and most thoughtful gift we have ever been blessed to be given by another person. The present was from my dad, and it was couples counselling.

I know right…

Seems weird, but here is the thing..the way he explained the gift to us was that we seemed very happy together, and that he thought we could be happy forever, but it would be a mountain to climb at times and people give up too easy today…that love wasn’t a right…it had to be fought for to hold precious long term. An interesting perspective, and so very true. We started counselling before pretty quickly after that because we felt if we delayed we would never go back, and it only took one session to know it was was a really smart move. Talking, we realized that it is easy to be happy when it is new, and it is easy when there has not been much for adversity in a relationship, but by going to counselling we learned to communicate better and it is a lot different in that controlled environment. This continual therapy would be able to open us up to facing issues before they were problems, and we would be comfortable in that environment if we had something bigger. It is hard to step up and go get help, and it is human nature for certain guards to rise up in that situation…but for us this would be nothing new…it is an environment we would be comfortable within already, so that boundary is already gone.

I dunno if I am explaining this as good as I can…I don’t feel I am…but hopefully the general concept comes through.

We’ve had our little battles, and I feel like we discuss through those fairly well most times. Sometimes there is something that you kinda push away, but can bring up in that controlled environment for discussion and I think it is super healthy. The hard times…hey, no doubt we’ve been through them of late, and my husband says having that resource was huge to him. He said that in the past he would have shouldered a lot of it on his own, and who knows hat that would have done to him emotionally…mentally. Now he has had zero problems going in and seeing someone and had really beefed up his sessions a bit. Sure, that is one on one, but together created an environment…an normality of seeking that helping hand without second thought. Family and friends are great, but sometimes they give crap advice…sometimes they don’t want to know everything or you don’t want them to…sometimes that is going to put strains and judgements within other relationships…sometimes you can open up better to someone that is disconnected from the situation.

Ponder it…pretty awesome tool. Sure, you might go once a week or 2 to start, but then it will be maybe an hour a month and you go from there. Is an hour of extra work on bettering communication of your relationship worth it to you? If not, you have some deeper seeded questions you need to seek answers to IMHO. I don’t care if you feel awkward at the idea of a counsellor…this can save strains in various aspects of your life, and you know what…your relationship is 2, possibly more (kids), so it is far bigger than you…get the fuck over yourself.

At any rate, I have really pondered if I wanted to share this. It is pretty fresh, but I guess I am going to share it apparently…my husband and I…we had a MASSIVE fight. So we hadn’t seen each-other in a few weeks, and he came to the US while I was potentially nearing discharge from the hospital. Of course we visited a lot, and it was fucking awesome to see him, but then he hit me like a truck that he wanted to go overseas and help with the growing Ebola crisis….I lost my fucking mind.

I couldn’t believe he would even be thinking about that. Don’t get me wrong, I love where his heart is coming from, but now? I think fucking not. We obviously had a huge fight. I told him he needed to decide where his head was at with all of this and make a choice…yeah…it was that big…it was a situation where he had to make a choice and let me know.

It ripped my heart from my chest.

I told him to think about it over night and we would go over it in the morning.

He came by the next day, and it was clear he saw the light pretty quick. I expressed my concerns with him catching it..he tried to say it was safe. I agreed but said I saw the news and knew accidents with medical staff were happening. He tried shrugging that off. I said it wasn’t fair when my future was pretty uncertain right now and that he had to have his child as his number one priority…that’s when it seemed he was hit by a truck and it all set in. I love love love where his heart is at with it all…he wants to make a real impact, and right now…what’s bigger…and I told him that…and I told him that is but one of the reasons that I loved hims so damned much. We have previously talked about and basically decided we would do some sort of humanitarian aid program when I was in a better place, but that we wanted to attempt doing something together…so we are back on that path, and as much as he would like to help out now, and feels bad that he is not, we are both happy with the outcome of all of this.

This was huge…massive…and at past points in my life there is no way this gets talked out in a day…but we have put a lot of work into our relationship and improved on the tools of maintaining it…nothing in life is free, and little is easy, even what seems like the basic human right of being happy…you need to work at it…you need to fight with everything you can…because nothing is more important.

On a cheerier note…I have been discharged, and we had a “date night.” Maybe I will share some of that later 🙂

A Soul to Squeeze

Some things hurt more than others, and sometimes those things that hurt are still embedded in love. When I found out about my condition my first and foremost thought was my daughter, above all else. I essentially grew up without a mom and feared the same of my own daughter. Now I would never see myself intentionally separating myself from her, but when I got the news it is a fear that overwhelmed me and shook me to me core. My second fear was it becoming too much for my husband, who deals with patients all day only to come home to me, but my biggest fear by far was for my daughter.

As things progressed I wrote to her, and we made a lot of videos, and I read books and recorded it. So many people told me I would beat everything and that I didn’t need to do all of that. I know where there heart was coming from and always appreciated it, but for me it was something I needed to do for peace of mind. Knowing I did all of that gave me the knowledge that I did everything I could to be a voice for her as she grew up even if I wasn’t there. That let me concentrate on me a little more when I needed to. I don’t know if that makes sense to everyone or not, I guess everyone is different and people deal with stuff in their own way..but hey…that’s me, and as much as it killed my husband to see me do those types of things he understood why I needed to do it and did his best to support me through it. I could see it in his eyes….the pride of seeing me care about or daughter and look to her future to answer a few questions and be there for her, and at the same time knowing what it meant if she ever had to use those.

They say she is a fast learner. I tend to think a lot of that is the intense involvement in things like this that progressed her a bit faster. I don’t know for sure, but it is what I feel in my heart. To put it in perspective, my neighbor was shocked one day when she saw her trying to walk at 20 weeks old. I didn’t realize that was so early, but apparently it is pretty stunning. She had already been standing for some time. I guess I have just tried to cram so much in with her in a short time she was either going to have a sensory overload of grasp a few things faster…idunno…that’s what I like to think anyways.

At any rate, when I went for my sleep my best friend happened to be coming to town for a visit, and actually showed up without knowing what happened…stranded at the airport I guess…finally getting online and seeing a message. I can only imagine her shock. Now for her, she had just kinda been fucked over at work and was just getting away to clear her head a bit…but being the totally awesome person she is, what did she do…she stayed. She has had to leave town a few times, but has essentially stayed put and looked after our daughter as if it was her own. Here-in came a pretty crushing blow to me a few weeks back…shortly before I switched hospitals. They came to visit and she responded to my friend as her mom. It tore my soul out. I wasn’t mad, but I was crushed. My friend talked to me in private for a while and she was crying she was so upset…I just hugged her and said thank-you. I told her that yes it hurt, but it provided me with 2 things above all else…motivation to push myself to get home again, and the extreme joy that I had someone like hr in my life who could take on that role with so much of her heart that this would happen. She asked if I wanted her to move out, and I just laughed. We had a really good talk, and I think she understands that there is not an ounce of my soul that is upset…that it is actually comforting on some level. If had been anyone else…who knows…but not with her.

The second thing that kinda tore at my soul was shortly after. My brother and his wife in California offered to take my daughter on until things stabilized. Now this actually made me a bit mad. I was pretty shocked by the suggestion. But I did process it and I know how hard that must have been for them to extend. I love them to no end, and I know that this was done with nothing but love and wanting to offer a peace of mind to my husband and I to concentrate on other things. Yeah, I was pretty pissed off in the moment, but it didn’t take too long to realize where it came from and once again realize how luck I am to have these people in my life that are willing to step up like this. I can only imagine how many people go through major life events such as this and don’t have that support structure. I have seen it a bit when I have visited children’s hospitals and such…some of these poor families that don’t have a support structure and are grasping to get by financially in their time of need…it is crushing. I know how damned fortunate I am!

9

I’ve been shaking
My head’s in the cloud
and I shuffle my feet
and I can never look down
high and low
I’ve been there before
when they’re messing around
well I’m up and I’m gone
tell me a story
I know it’s unique
I sense in the moment
that we’ll know how it feels
camping a while
and not making new plans
it’s all in the moment
yeah I do what I can

I officially took a few steps without using my arms to support myself. It seems small perhaps, but to me I just climbed a mountain. For the first time in a long time I am feeling a lot like myself. I have energy and am smiling a lot and looking forward to each moment of the day…the good ones, the bad ones, the fun ones and the hard ones…I want them all.

It is a great way to feel.

For the first time in a while…I simply feel full of life!

Home and Back

There are things I remember about being in the hospital…some more vividly than others

Waking up to my best friend crying

Holding my daughter for the first time…10 days after waking up

Hurting my friend K, and that pain I caused opening my eyes

Being told my kidney was fucked

Finding out I most likely need bone marrow transplant

Telling my husband I didn’t want to talk to him and kicking him out of my room…and being absolutely crushed about it later, only to have an orderly contact him at home and him call and tell me he loves me.

Getting off of continuous dialysis and out of the CCU

Bartering for junk food with other patients

The first sounds I made…couldn’t have been a better first sound with a better friend….laughing about a story from her beheading flowers…lol…you hd to be there.

Throwing my sippy cup at a nurse

Finally getting a chance to really roam and choosing the children’s ward to spend my time…something I used to do before I got sick once or twice a week

Planning a dinner in the hospi for my husband’s birthday and having him give me the most amazing present possible just in advance…walking into my room and saying let’s go home

There were so many things, but those really stuck out.

It is funny the things that really stick out and you remember.

When my husband came to take me home, I did my best impression of someone who could leap out of bed…really happy he caught me.

But one of the more painful things that really hit me was finding out I likely need a kidney transplant and finding out about the bone marrow. I’ve been there. It is the first time in my life I have given up. I never told my husband…only 1 friend. He found out when the doctor came in to get me on the donor list and I refused to sign. He was furious. I told him it was my choice…not his. I didn’t want to go through it. He was mad because I didn’t tell him. He was crushed that I had given up. But how amazing is my husband? What was his reaction? He went to his friends and colleagues and spent the day gathering information on the advancements of the procedure. He brought that back to me and said read this…don’t make a decision now…let it sink in and process it…but remember, if you don’t go on the list, you have no choice…if you go on it you can say no later. My friend I confided in asked me what I would tell her if the roles were reversed. Two really good approaches. I am not saying I have said yes, I am not saying I have said no, but I sis sign onto the list. I will think about it. I will give it time. Maybe it was just too much for me to process. It brings back memories of a pretty bad time in my life. I was bed ridden…confined to the hospital for months as a child with this…and I remember not carrying…I remember the pain and the tears…I remember my mom leaving. I don’t have happy little memories like I shared above…they were all bad. They were all painful. But hey…now I have my own family…my mom is back in my life, I have an amazing daughter and a great husband…perhaps this will promote my enthusiasm…I haven’t given up hope.

But I did make it home…for a while. We had some fun…I got to be with my family and even made it out socializing a few times! But it became so hard. Shitty circumstances meant I had to go to the hospital every day for physiotherapy. So I was up really early and commuting in to there, and I would get home and was so tired…it wore me out…and then I started getting sick. I would get a cold, get over that then the flu, then another and a cold again…it just didn’t stop! I got so sick I couldn’t to my physio, so I was, after a few weeks, left with no choice..I returned to the hospital…where I remained perpetually sick. Over and over and over…it was just sucking the life out of me! But some home has come…I got admittance to a premier facility in the US…and here I am. I am super lucky to be in a financial situation that affords me this treatment…truly blessed. Things are going really well…so well that hey…I was finally up to coming back here and writing…and that in itself is helping me…my own little self therapy. They have seemingly started to get my immune system going again…a combination of cocktails and then hitting me with little viruses…giving my immune system a head start with the cocktails and then making it work…bringing it to life….and I feel really good.

Remember this…Not everything happens for good reason. Sometimes one needs to let it hurt instead of immediately motivating to change, not because they can’t, but that dealing with the pain is easier than dealing with the problem for a while, knowing facing it here and now will result in a big old “fuck it.” But remember, retreating is not surrendering…there is a difference. In one you have given up entirely to your circumstances, and in the other you are gathering your wit and resources to go to battle on more desirable terms.

I will not quit
I will not stop
I will win in the end
and no matter what you might be going through…you will to!

Attitude and Everything else

I can not deny that I don’t always deal with stress in a great way. I am the girl that you will always see with the biggest smile ever, even if I am dying inside. I don’t always express myself well on the spot and after digesting things for a few moments know what I should or should have said…or perhaps how I should have reacted. I think that is why writing has always been therapeutic for me…from writing songs and poetry, to having a councilor encourage me to write my thoughts down to help process them (perhaps the best piece of advice I have ever received), to my 43 letters, and I guess this blog. But I still process things in my own way…and my husband has really opened me up to stating something that I think everyone needs to learn to express in a non-offensive way; “I don’t want to deal with/discuss this right now, but I hope to be open to it in the future.” When someone wants to talk to you and is pushing you a bit it is very easy to get up in arms about it and be all defensive and often lash out…or in my case often shrug my way through it all…and that makes the other person feel unwanted or that you don’t care what they have to say. They are coming at you because they care, and you need to remember that. It is a big thing, for me anyways, to work my head around.

As an example…when I woke up I received presents and flowers and such, and I get it…I appreciate that I am on peoples mind and that this is a way for them to express that to me…to give a token of their love for me…but I don’t process it like that…it is not how I am built. Sure, I need to find a way to express that better, but at the same time…I need to put what works for my mental well being best in my head. My reaction to these was and still is anger. Now I thought that this might go away in time…I guess kinda like people had been dealing with my situation for a few weeks, but for me it was all brand new…my head was not where they were yet…but I think I am wrong. Perhaps I am a freak…idunno…but you know what…I will be any freak I choose to be because that works for me right now. My reaction has been to refuse or garbage the tokens of affection…I get it…I get why I receive these things, but it doesn’t put me in the right frame of mind. I need a certain frame of mind in me…I am driven by that…getting these things…this physical token of sympathy that I wake up to an look at…it sucks something out of me. Am I a freak? Maybe. Oh well. I am more concerned with what pushes me. I need to do things for me…that’s just how I am.

I ask my loved ones this…talk to me…share with my your joy…share with me the burden of your pain…share with me some silly quirk from the day…you want to show you care,,,pick up the phone or drive over for a visit or hop onto Facebook or some messenger or whatever it might be to your children, husband, mother, father, boyfriend, pet, favorite painting, the song that melts you or whatever the heck it is that you love and cherish and tell them just that…that you love them…for no other reason than it feels good to tell them…express that love for all to have a smile. Share with someone new…go to a food bank and donate an hour of your time, or visit some sick kids and read them a story, or an elderly home and play a game of gin rummy…That is how people share their love…when I am eventually dead and gone, I hope that I have touched a few souls by doing some of these things, and I hope that people will see my efforts and maybe be inspired to do the same. I know it sounds hard…but one person can make the world a better place in a hurry by doing this…and you will be shocked how good you feel afterwards!

You know, once I got off the tube I still couldn’t talk…I tried but nothing came out. I describe it like this…put your hand over your mouth and get a good seal on it. Now exhale hard and try to talk. Not easy huh. That was me trying to talk…I am slowly getting better…I know I will get it back.

I look when I first awoke and started moving a bit. One of the things that was really awesome…a tablet. Couldn’t talk…couldn’t really move my arms…so the tablet was a thing of beauty for me. On top of that it really pushed me to use my hands, and I felt that my arms came back pretty quickly. I mean, I couldn’t lift stuff, but I could move them…I couldn’t feed myself at first, but I could convey messages and talk to people with them.

I slowly gained traction. They got me to the point where they kinda dragged me around to get circulation going. I couldn’t feel my legs…but they weren’t totally dead for circulation. I have a series of surgeries to repair damaged nerves and do some skin work. I got to the point I could use a sippy cup to drink, and my first big action was throwing it at a nurse lol. Don’t worry…she deserved it. She threatened that if I didn’t get off my tablet and sleep that she was going to give me a sedative. Really? Are you fucking serious? Not the right thing to say to someone who was just in a fucking coma and is scared shitless to close her eyes. And then I got into a wheel chair, and eventually could cruise around a bit, which I really enjoyed….freedom…doing something for myself…bartering with other patients for junk food lol. And then I got into rehab. They worked on me until I could sit up on my own and move my upper body more. They got me into basically an adult version of a baby bouncer…you know the things on bungy cords that the kid sits in and can bounce. Sounds funny, but it was actually a really helpful tool. They got me on balance bars where I could support my weight and try to walk…and I would fail miserably..and they would be there to catch me…and I would piss them off because they would turn their backs on me and I would push myself hard while thy were not looking…giving myself a wide variety of bruises. But hey…like I said…that’s me….fierce in my independence. Gimme some tools and I have all the self-motivation in the world. They said it frustrated them…I know it did, but I am the type who pushed myself in the gym until I dropped…so physiotherapy for me…much the same.

I met an awesome orderly and requested that he help with my physio. He stuck me in the right way…he came into my room one day when I was sitting in my wheelchair and I asked him to pass me something. He basically said…hey…it’s right here…come get it. That…THAT motivated me. Not for everyone, I know that…but for me our minds clicked! With his help I pushed myself in physio. After six of the longest weeks in my life…six weeks of trying…I stood. Sure…I did not stand on my own…I needed both hands on the beams…but I stood…I mighta looked like a baby giraffe….but I stood. I giggled so much I damned near face planted. I was so pumped!