You know, I have not posted anything lately. It has been very hectic, but also a very good few months. Late winter I could see that my husband was burning out. He just amazes me every day! Everything he has been through and staying strong for me and our daughter and rarely showing frustration or fears. I mean, he deals with medical crap all damned day then comes home to it…stunning. By mid February I could tell he was burning out, and I knew I had to do something before spring came. I had went to the doctors to seek advise on travelling, and the strongly advised against it, stating that while I was doing well and my rehabilitation could probably go a little stagnant for a couple weeks that if I left the country I would have no insurance.
My God! Insurance? I had never even considered that! I also thought about it for a while and said…who cares about insurance if my husband has a mental breakdown? I also started thinking how nice a sunny beach retreat from winter would be, even though it had been pretty damned nice here…it was still minus whatever with snow. Then, that got me thinking…holy crap…I have not had a true summer in a couple of years! I was pregnant one summer and in a coma then the aftermath the next! My god…I ALSO NEEDED THIS!
Well, it took some twisting of my husband’s all too often logical and well thought out mind…ying and yang there…but he finally caved and agreed to throw caution to the wind. I booked a trip to Belize and we dropped the Lil one off at his parents place in the US for it. They fricken loved the idea because they are so damned far away that they rarely see her and it literally brought tears to their eyes when we asked! I remember hearing his mom tear up when we asked…which of course made me drip some happy tears as well!
Anyways, we spent a couple days with his family, then hopped on another flight for some alone time in Belize. It was fucking amazing! We only stayed in each hotel a few days at a time and just kinda roamed around a little bit…everywhere we went was just breathtaking! He got to do a bunch of spelunking and diving…I am not there yet, but he loved it. If you have ever pondered going there…highly recommended. It is not a full on tourist trap, or at least yet. It is not filled with gross poverty (so is a little more expensive), and it is not riddled with all-inclusives, so there is a lot more getting out off the resort…to each their own, but I am not a huge fan of those…I am sure at some point when all I want to do is relax in one spot in the sun they will be a lot more appealing. The weather was perfect…mid 30s like clockwork every day, with this odd light mist….awesome.
One moment made me know it was the right call, not that taking a vacation is ever a bad call, and that was within literally minutes of checking in. We had a lil fun and nap then I laid out a nice cigar I had tucked away so he could relax staring out at the ocean while I took a bath. When I came out I saw the cigar unlit in his hand and him sobbing on the deck…he had done it…relaxed instantly and all the emotion was just pouring out uncontrollably…God…I knew he needed a good break. I just went up and held him…squeezed him as tightly as I could and we sat there without a word for a couple hours before talking. I love him more than life itself…luckiest girl on earth, no question.
I will continue this a bit later…just kinda felt like sitting down and writing a little bit…joy and love to all!
Being in the hospital for so long and now being home I have realized I have a lot to relearn, and well, a lot to learn. My daughter is coming up on her first birthday, and I was learning maybe as much as her every day when she was born. I have historically never had a pile of exposure to babies. Yeah, I have been around them here and there, but not for extended periods.
Now don’t get me wrong for one second…I am ecstatic to be home and welcome the challenges, but it is hard…the best and most important things generally are. I do have a challenge that I haven’t really talked to anyone about, though I think my husband has figured it out already; that challenge is people that have been around my daughter more than I have. They know subtleties that I don’t and they try telling me about them. Now, I appreciate the help, but don’t receive it well. I think a big part of that is the pain that I don’t know a lot of these things…that a lot of firsts were taken away from me. I am pissed off that people know a lot of things about her that I don’t. I also combine it with the fact that I fear I am learning at a slower pace than before the coma. I have expressed that concern to my husband and he insists that I am fine and that if anything it is lack of mental stimulus for an extended period. Maybe he is right, I don’t know, but I do feel that I take things in a little slower than in the past. I see it in lots of things…from grasping a joke, to understanding something in the news that I would have grasped immediately in the past. It scares me a little…a lot really. I mean I don’t think, or I hope, that I will not decay mentally, but there is obvious fear of what damage my condition truly did to me.
I have found myself trying to pick things up where they were 6 months ago, but the simple fact is my world moved on and progressed without me. I am trying to come to terms with that…to accept that I have missed a lot and that I can not rehash or experience those moments. I know that I have to learn about things that have happened and look forward to those that are yet to come…doing that is harder though.
We climb a lot of hills in life, but I know that my husband will refuse to let me do that alone, and for that I am eternally grateful.
It is amazing how fast an emotional switch can be flipped isn’t it?
Yesterday I felt empty and at an all time low, and today I feel fricken amazing.
I had been trying to explain how I felt, and trying even harder to figure out why. My husband, the most amazing man on earth and he who make me the Luckiest Girl On Earth, saw it. He knew it. Even though he is thousands of miles away at home while I get this medical care…he fixed it when nobody else could!
But how can one fix something just like that? Well, I guess it is pretty easy when you are him! We were talking about a few things, and he steered the conversation into talking about the house. From seemingly nowhere he says ‘Good news, I found a nice 900 foot slab house and bought it and have accepted an offer on ours, so when you get home you won’t have to worry about a big house and stairs!’ Now ours is a few thousand square feet and on an awesome acreage edging town, so I lose my shit…like I snap…my mind blows. He finally stops me and says ‘You know I didn’t actually do that right, but did that feel good snapping?’ All I could do was pause, say yes, and start balling my eyes out. My emotions just poured out. He amazes me. He knew what I needed and he eagerly took the beating to get there! I just can’t imagine not having him…and he I…he amazes me more every day!!! He has been my rock, my crutch and kept my soul in tact the past year or so. Completing me and forcing me to be the true me at the same time.
And now…well…now I pack. It is time to return home. I was really believing I wouldn’t be home for Christmas, and even if I am not a huge Christmas person, that was still hard to deal with, and I think what was the fine straw that was playing havoc on me. My husband contacted my doctor to see where I was at, and ask if I was ready to come home…something I couldn’t do. I am not sure why I couldn’t ask. I tell myself it was because I didn’t want to push for it and have them send me on my way too soon, but in my heart, now, I know it was more because I couldn’t handle being told I wasn’t ready. That would have crushed me. I am however going home, and that is what matters!
Do you ever just wan’t to give up no matter how deep you dig?
You know when I started chemotherapy for the second time in my life it obviously scared the fuck out of me, but I was more than optimistic and eager to be that girl who could say she beat it twice.
When I awoke to find out I had meningitis I was pretty numb to it. I eventually went through the emotions…some self pity and anger, to hope and desire to push myself.
When I found out stopping chemo because of my situation would likely mean needing much more intensive treatment I gave up…I didn’t want to go through it…I had accepted my mortality. Some good friends and family pushed me through that and I eventually came around.
Now, I can’t believe I am saying this but my GAF seems to simply be gone. Things are going pretty well, but I can’t seem to motivate myself. I’m depressed, yet I don’t cry. I am sad, but really have no idea why that is. I have a go to list that I think about when I am down which always brings me around…it is having no effect. I received some lovely flowers the other day, and I think that might have spiraled me…I don’t know. It’s like it makes me think of the family and friends I am not around, especially my husband and daughter. It makes dwell on my situation. Well…I finally chucked them out today, so we shall see what tomorrow brings I guess.
I’ve never felt even remotely like this before. I hate it. It is NOT me, but I don’t know how to lift myself from it. I want to scream for help from the mountain tops, but how does one whom is pretty self-aware do that when they don’t know what is wrong?
Sometimes it is all really hard. I am a pretty upbeat person. You will be hard pressed to find me without a smile. I mean even with everything I have struggled with of late I still dawn a big smile almost all the time. It is not a fake smile, it is not me putting on a face, I am a genuinely happy person. I often am the peace maker, and the one who makes people giggle with my general sillyness, and I love being that person. I am happy because no matter how bad things get at times I know how much worse it is for others, and I see everything I am grateful for, and I can’t help but smile. This brings me to today though…I don’t know what it is, I simply have not been able to smile. I miss my family, sure, but I have been missing them a lot…it can’t just be that. Health wise I feel pretty good all things considered. I just made my personal goal of hopping and landing it by Christmas, so I am straight up pumped about my progress.
Generally when I am down I do a good job of putting my finger on it and working around it. Either solving the issue or refocusing my energy in a positive manner. Today…today I just don’t know. Maybe it’s the Christmas season fast approaching and me not being home and not entirely sure if I will be, yet I am convinced I will be. Maybe I need laid…not kidding…that could be a part of it as funny as it sounds. maybe its a combination of a whole bunch of things which is why I am having a hard time managing the situation.
A friend asked me what was wrong today. My answer was simply “I don’t know.” We batted things around, and she was a pretty good ear, and she tried to make me giggle…it simply wouldn’t take. So now I am getting depressed about being depressed…it is a twisted and evil spiral.
So now I am left pondering this….
Is it okay to simply be depressed for a while and maybe be self absorbed an wallow in some self pity?
I can reach
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 can hear
I don’t really ever know just where they are
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 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
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.