One year - Thank You

Post by **_Sam Harris** » Sat Apr 12, 2008 6:33 pm

April the 18th is the one year anniversary of my stroke (or whatever the hell it was...). I know that a few of you were on MDB when Gaz broke the news. I want to thank all of you for the support you have offered me over this past year. In many ways, you've been the only link I had to the outside world, so please know that it meant more than I can say to be able to know that someone knew I existed. Many a weekend I lay in this bed wondering...in a way you guys kept me not only sane, but alive.

So thanks.

Here's a blog I put on my myspace page about it.

I can't believe it's almost been a year.

I looked outside earlier today, and I cried, because I remember lying in my bed at the same time last year, and looking at the tree outside my window. I don't know what kind it is, but it has the prettiest white blossoms...spring had just begun when my life changed last year, and spring begins again this year.

Somehow I walked through hell. And the fact that I walked sometimes makes folks think it's ok. It doesn't matter that I started out walking with a cane, it doesn't matter that many of those walks were to the hospital around the corner and back, high off of whatever they injected into me. It doesn't matter what I've seen along this walk...I walked. That makes all the difference, doesn't it?

So much has changed...so much has changed, where do I begin?

Why the hell did this happen? Was it really due to stress? A huge part of me says yes, every day I hear of people dropping dead at a young age, and here in the U.S. we run at such a fast pace...especially in D.C. everything, everything is work and make money. Sure, we have to survive...but is cable and a cell phone a necessity? We've learned to depend on these things because they are enjoyable or make life easier, but isn't peace of mind more important?

Some days I just want to shut my ears and pretend that nothing exists, I get so overwhelmed. But I cannot.

These days I want the peace of mind. Sometimes people close to me get on me for not seeming to care about certain things. Like bills owed, or household things broken. HELLOOOOO....I almost lost my life. The bills would be there if I were gone, and there's a Wal-mart two blocks away. Forgive me, but I tend to get angry/sad/pissedthehelloffatyourdumbass headaches in seconds now, and they don't go away in seconds, they get comfortable and stay for days or weeks. They travel to my neck and my shoulders, and I walk around in pain with my mouth shut, and few people know just how hard it is. They are not easy to get rid of, they are EXPENSIVE. Percocet is neither cheap nor easy to come by. For the next few weeks I am uninsured, and any trip to the hospital I take adds to the $52,000 debt I currently owe. Let me just deal with the issue in my way, if it's imperative to be taken care of, I will take care of it. I will.

I made a huge mistake last year, and I see that now. I lost faith last year. I allowed myself to believe that other people could shape my destiny. Steve thinks I'm soft. He's not used to someone as quiet as me, well, until I get pushed to my limit, and then I start throwing things... I tend to withdraw in the face of conflict nine times out of ten. I get very sensitive, but I do not like to fight. But in reality, inside I'm like steel. I may seem goofy to you, I may seem quiet and nice, but really...my soul is like ice, I have a cruel side you can't even begin to imagine, life has trained me not to give a damn, I'm just trying not to play that out. I look for safe ways to vent my anger, that's why my writing seems so "dramatic", it's better this than a gun. Every day I repair the dam that holds back the rage regularly, every leak I plug in, as I don't feel it fair for innocents to pay for the sins of those who hurt me when I was a child. It's called integrity, folks. The news is filled with people too weak or too stupid to get themselves help. I took the high road. Respect me for it, and let me have my eccentricities, please.

All my life I have had to truly bite my tongue. I've never been able to express my anger, vent my sadness, truly feel joy...well, until now. 99% of my life is lived on the inside of me. Dealing with my mother, I was not allowed to look like I disagreed with any choice she made or any thing she did to me. I can't even cry in front of others because of her...not even at funerals sometimes. Can you imagine? I've been in therapy for 13 years and can count on one hand the number of times I've shed a tear. My father, God rest his soul, just made his choices and expected me to cope somehow. No one ever thought about how their choices would affect me growing up, and now that I'm ill from the burden, no one knows how to approach me.

People just don't know what I'm capable of in light of what I've seen, done, and been through. And I guess it irritates me, they judge so quickly. Drama queen, indeed. But that's partially my fault I guess, I don't make myself easy to understand...but I cannot. I'm an enigma. I've said it a few times, the only person in this life who will ever truly be able to figure me out is my husband...and that will take years. LMAO, good luck Steve!

It has been a tremendous journey, this past year. And to come full circle in such a way, returning to that which I once feared so much. I can't even speak on that yet, so I'll leave it alone. But I do need to speak on what it's like being inside this body...I need people to understand. Their words still tell me that they do not completely. It's not their fault, I'm not being clear enough, perhaps.

Society has this view of youth; it always has. Carefree, healthy, vigorous. But reality teaches us that death and illness are respecters of no person. Babies die, children die, people die. And all of these take ill. I think that the old place their regrets on the young, and that's not fair. I get tired of people who are older than me looking at me and assuming that I should be the picture of health. Especially older people who have never dealt with my health problems. They should be blessed to have made it to their age with only arthritis and incontinence to be worried about, instead of a brain that bleeds and what may be a tumor at the base of it.

After I came home from the hospital, that first week, I came down off of all those drugs, and it was hell. I couldn't eat. I was too weak to walk. I lost a pound a day in the hospital. Mom was my nurse, and despite her craziness (yes, still there), I am grateful to her for taking care of me this past year, and I am grateful to her and my stepfather for their vigilance, concern, and desire to make sure that no matter how bad it got, I'd be able to take care of myself. Steve came into the picture later, but he too has taken care of me. They are the only ones who have seen. Everyone else who has seen me in the hospital or heard about it has seen the smiling me...I think perhaps I've put too pretty a face on this illness.

I was home for a month. I should have stayed out longer, perhaps I would have healed better. But I had no money, no insurance, and I feared for that stressful job that I knew I would have to go back to. So I begged to go back before I should have. I went back before I really had the strength to, and from that first day almost up until now, I have struggled to work a 40-hour work week. Those first six months were awful, because the headaches were so intense, I could not lay my head on the pillow. At least once every two weeks I would wake up in agony and have to go to the ER for an injection....usually between midnight and 4am.

Now I know why the ER near my house has treated me with such disdain, my neurologist thinks they might have misdiagnosed me with stroke. There's something wrong, we're still not sure what, my exams in those first few months were filled with question marks, but now they're wondering if it was a stroke which took me down that day. There was a bleed, but when did it happen? Was it a stroke? And what is this mass near my pituitary gland?

The ER docs at the hospital near my house saw no evidence of stroke in my CT scans, and they treated me with disdain every time I said I'd had one, but that is the fault of their hospital system, not mine. I was just going by what they told me, and trying to deal with the pain. There is something wrong with the left side of my head, I am not a hypochondriac, I do not like pain, I do not enjoy being in the ER at 3 am, I do not enjoy shots in the ass, I do not enjoy IV needles, I do not enjoy the curious sensations of foreign chemicals running through my body. I just don't.

But I was treated as if I did.

I went from making good money to choosing between medicine, food, and bills each week for six months. One of my prescriptions still has not gone generic, and it cost me $250 a bottle. That's all I was making each week, and this was for a 30-day supply. I still had to eat and get to work, pay other small bills, and take care of things like toiletries. Read past blogs from last year to get a glimpse of just how hard that was. I was dirt poor. Could have filed for bankruptcy last year...but could not afford it.

Every single day since I came home from the hospital last year, I have been in pain. Every single day. I may not show it to you, but it's there, at the back of my head on the left side...small enough for me to ignore it and move on with my day, but there. People think that I'm playing when I say I'm tired, or when I leave 3/4 of the food I ordered on my plate. They have no idea what it's like to lay down in pain, wake up 5-6 times a night to take medicine, pee to release the liquid you have to drink to keep hydrated and take the medicine, and just plain stay awake to deal with the pain. I used to stay awake debating on whether or not to take my heavy meds, because I felt they'd be addictive. Now Percocet is to me aspirin is to the average person. I can drive with it and not have a problem.

The people close to me cannot imagine what it's like to have to judge sometimes what you'll eat based on how easy it will be to throw it back up. I learned that lesson the day I ate a Chipotle fajita. Rice mixed with sour cream doesn't like to be regurgitated, so I'll never eat that again. Some folks wonder why I eat like a bird (though to some, I used to do that, so it's no big dea). My stomach is about as big as my fist. If I eat lunch, I'll probably not eat dinner. I feel the sensation of hunger now, maybe once a week. My stomach growls once a week, folks. Yours probably growls every day. I don't get hungry anymore. So forgive me if I don't give a damn about your sense of social justice over the starving children of the world, start donating to World Vision or some local charity if you feel that strongly about the issue, and allow me to enjoy what I put in my mouth when I know that it will stay down. I have few pleasures these days, ok? It's like my sucking my thumb, I've bitten Steve a few times for messing with it. Let me have my joys! Humph...

And what about living the life that a normal 26-year-old should live? I wasn't a party animal before I got sick, but at least I could stay up past 7. I really honestly think some folks think I'm lazy, but what it is is that they're blessed! I've had to give up my college education for a while, because I can't stay awake long enough to study. I'd rather give it up than try and make F's, when I know I'm an A student. I used to be able to stay up late and bust those papers out and get praise, I was working two full time jobs and going to school full time before this happened, and doing just fine, thank you. I am NOT lazy. I have hopes for my future, maybe partying isn't in it, but there's a nice park near the apartment Steve and I are moving into. I wanna take walks through there on weekends. I want to get back into my yoga, at least to stretch out these aching muscles. Can you imagine being in pain every day? This isn't drama, it's my life!

How many weekends did I lie up in this bed, depressed, sometimes suicidal, wondering if anyone knew I was up here? I once told Steve that it made all the difference that he did know I was alive, because I tell you, honestly, he's the only one who calls regularly on weekends. My friends, those who tell me that I'm full of drama....they're out living with health and vigor, they don't know what it's like to get worn out from a walk. They haven't dealt with people staring at a young person with a cane. They don't know what it's like to take a step out of bed and get dizzy most mornings. They can keep water down. Hell, they can go out and club in the middle of the week and go to work the next day!

I have to schedule for 10 hours of sleep to make sure I get 7.

I get so frustrated sometimes, because I know I look ok. But I don't always feel okay. I remember a few days at work when I had energy, I ran like mad, because I knew the days were coming back when I'd be sick again, I wanted to get as much done as possible.

359 days of survival. I am grateful. I'm still here. I don't believe that I'm going to die, but it says something to me that for the past year I've had to sit and think about that saying, "Tomorrow is promised to no one". People say it, but I think to so many, it's really just cliché. It's cliché until someone close to you dies. Wait until it's your tomorrow that's in jeopardy...

Now I concentrate more on the legacy I'm going to leave.

Never before in my life have I seen God move in the way He is moving now.

It has bee 359 days since everything fell apart. I can't say the structure is completely rebuilt. I can't even say that the foundation is secure. But I can say that my limbs are getting stronger, and the task of reconstruction is getting easier. I just wish that people could see, truly see...that it has taken such work for me...

I wish for this so much.

Post by **_Moniker** » Sat Apr 12, 2008 7:23 pm

GIMR, I'm glad you made it through this year, and found a man to bring along for the ride. I so hope the next year is less pain, and depression for you! Only wishing you the best.

Post by **_Sam Harris** » Sat Apr 12, 2008 8:14 pm

Thanks, Mon. There have been some people on here who have checked in regularly, and they have no idea how sane (well, figuratively) they've kept me.

I'm blown by the new current developments, like the "new" job on monday. Weird stuff...I just saw the girl I'm replacing/used to work with/used to get on my last nerve when I went to the library just now. This is some Twilight Zone type stuff....really. But I'm trying to be grateful instead of paranoid, since everyone else is happy for me.

My job sent me off with sadness, cards, and MONEY! I didn't know they gave you money when you left, usually they're wiping their brows when I leave, LOL.

It's been a journey, and I have a feeling in some senses it's only just beginning, but I made it through one year, so I'm grateful.

Post by **_Moniker** » Sat Apr 12, 2008 8:18 pm

What a wonderful leaving gift they gave you! Be grateful, GIMR! Good luck on your new job.

by the way, how are you feeling? Still think you're pregnant?

Post by **_Sam Harris** » Sat Apr 12, 2008 8:29 pm

Feeling good today. Got a good rest, parents are not home (can I get an AMEN from the congregation???? Can I get a BOOOMSHAKALAKALAKA????). Steve is out with MIL shopping for her new dining room furniture, so we get the old set. She's also buying us towels, one less thing to get, yooohoo!!

I feel pretty good. Headache very small. I went to the library, it was hot as Hades in there, almost fainted, got my books and got out. Have some movies I want to finish, just reading and online right now.

I'm waiting to take the test still. It's agreed amongst me and "Daddy" that a couple more weeks won't hurt. Though the meds I usually take I've stopped, because something told me to look them up online yesterday and see if they were compatible with pregnancy....no, they're not. The only thing I can take for my headaches right now (that will work) is ibuprofen, and I can only take that the first two trimesters, if I'm pregnant. So part of me will be relieved if I'm not, because then I can plan better, but part of me (and I'm sure all of Steve) will be thrilled to have a little booger on the way.

I was looking at these yesterday, as I saw one months and months ago, and thought to myself that when I did have kids, I wanted one. I do not like the idea of baby out of my reach the first three months.

http://www.armsreach.com/

These are bassinets that attach to the side of your bed, so you're close to your baby. Whoever thought of this is brilliant. Especially if we have twins (all too possible), because there will be one on each side of the bed. I have it all planned. We'll switch them each night, one will be breastfed one night, and the other will be bottle-fed (if they accept that, some babies are funny) breastmilk...and if I can produce enough....oh boy... *laughs*

Steve is not getting out of getting up in the middle of the night...though he doesn't want one of these, he wants to suffer and go down the freakin hall (or in our case, across the house) to get the kids. Nope!

Ready for your trip?

Post by **_Sam Harris** » Sun Apr 13, 2008 12:15 pm

A bit of clarification (because I know some of you are wondering, even if you're telling yourself you don't care).

Why thank all if I supposedly hate everyone here (which isn't true anyways, but I'm still not backing down on what I don't agree with)?

Rather than leave someone out, I'd include those who were otherwise occupied. I'm sure that if I went down the list and named names, someone would get left out, and that's not fair.

There were people who checked in via PM, people who responded to my "is anyone out there" threads, people who sent up prayers. Every little bit pushed me forward this year. So, if you think I'm nuts, and you can't stand me, so be it. But there are those who kept me going, and I'm grateful to them and most eager to say so.

Post by **_Moniker** » Sun Apr 13, 2008 4:57 pm

You know what, GIMR? My last year was the hardest of my life... and there were people that were rather rotten to me. Yet, I thank them, as well! For life is nothing if it's not a reminder that there are joys and hardships -- and some that delight in each. We choose which camp we align ourselves with. If not for the reminders of what I wish not to be would I strive so for who I do desire to be? I doubt it. :)