Wednesday, October 28, 2009

This is now: survival, eating ashes and going on

A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.

People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.

From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”

I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.

“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.

You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.

I experience that almost every day.

After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.

I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?

She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.

The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?


I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.

So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.

Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.

I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.

Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.

I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.

This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.

So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me.
Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.

One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.

I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.

Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.

I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’

Oh, and I WILL get to New Orleans.


wendryn said...


I'm sorry it's so hard. I understand the fierce grin - I've been doing that a bit lately too, although for less intense reasons.

I'm glad you will continue to do badminton and will be pushing for other things. I worry about you, but I know you have to push to survive.

You do make a huge difference. Just...take care of yourself too, ok?

A. J. Luxton said...

Beth, what kind of vitamin oils are you seeking and how are you seeking to use them? As far as absorption goes, I've also heard good things about sublingual...

I get vitamins from an online company that constantly spams me but has the best prices I know, so I can look in their inventory and see if there's anything that fits your needs. If Linda wants to respond to this that's cool too.

Raccoon said...

Neil, pass along wishes of good health to the missus. Suggest that she's in good company? One of the guys from Kiss had breast cancer...

Beth, that first picture looks almost peaceful.

I've done the "save your energy for something important" trick. Sleeping a lot helps, as does just sitting/lying with the eyes closed.

I'm looking forward to your next trip. And not traveling it alone.

SharonMV said...

I love your calculating, ruthless bitch side, your fight & stuborness - anything that helps you stay alive. People don't understand that after a few years or so of constant illness & fighting it, you don't have reserves - none at all. Rest & care, meds, help you come back, but there is always something gone, you've sunk deeper into the pit. Your soul, strength of spirit & mind, and love are all the "push" you have, to scrabble up the sides of that pit & do things again. Those important things.

My fight is not as hard as yours, but I'm fighting for my future, fighting so Dennis will not be alone too soon.


Anonymous said...

Sorry , that looks not so great. Take care. I hope badminton will be fine. Love anna

Lene Andersen said...

As my father used to say. "fuck on regardless"...

I sometimes think you have reached acceptance, just that your version of it isn't meek. More snarling and "I'll wring out every last bit of living out before you get me and even then, I'll negotiate more time".

I wish I lived closer... erm... and wish I were physically capable of helping (otherwise living closer would be useless). I'm so sorry you have to spend so much time on the edge. Big hugs coming your way.

yanub said...

I did not know your wish list was back up! I will look!

I had intended to write a longer comment, but I see my arm is not going to cooperate in the time I have to write, so I'll just say that I like your pictures of you as you are most of the time. I wish you weren't feeling so close to death most of the time, but I like to see you as you are.

I am finally getting through my backlog of things that needed to be done after I got my laptop back, so I expect I will be able to resume regular email communications, assuming the other arm doesn't join in the fun. So, later!

Tom P. said...

Every time I think to myself, "I'm just too tired to do that today," I kick myself as soon as I think of you.

FridaWrites said...

Neil, I'm sorry about your wife's breast cancer too--I know the uncertainty and waiting are very hard. There is a lot of good information out there.

Is it time to think about catheterizing or using a bedpan sometimes? Transferring regularly helps maintain the strength you do have and catheterization can be unpleasant or cause infections, so that's a difficult decision. I would have mentioned potty chair, but since you're there a long time, that probably doesn't give you enough support.

I knew there was probably a lot in Hawaii that we weren't seeing given your usual condition and the demands of traveling--pushing on comes with a cost.

That is a lot of sports--I would ask if maybe doing one or two is a better idea, though I know you do whatever you can.

I am determined to get to New Orleans too.

JaneB said...


(((Linda))) as well

Thank you for shaaring all of yourself with us, NOT just the cute stuff, the 'doing amazing things' stuff, but all the backroom things it takes to get those images out there.

It's hard to read. It's frightening to read. I so often read and think, I WOULD be dead by now because I am alone, I have no Linda - she and you together are heroic, more for the mundane stuff, the daily little details, than for the 'big impressive event' stuff. Thank you though for writing, for opening our eyes and sharing with us.

It's payday friday, so I will get you some Florastor, I can't 'pop over' from the UK to give Linda an hour's break, but at least I can do that much.

Neil said...

Well, we cant fault you for not being honest, can we?

Okay, the latest photos of you aren't the most flattering, but I have to disagree with you on one point. You ARE beautiful. Yeah, your beauty's more inside than it was, but 'were' is just too ugly a word. 'Specially next to 'beautiful.'

But to be as honest as you are about yourself, I have to one thing to say. Looking back at your older posts, yes dear, in my not-at-all-humble opinion, you were a stunner.

Now, as to whether this latest lack of energy has got you down and out: never give up, never surrender! (We won't either!)

Raccoon: good wishes will be passed along as soon as she's off the phone with her sister. Thank you; and someone mentioned the Kiss drummer already. THAT's the band you think of as good company??? :)

Love and zen hugs, Beth, Linda, Cheryl, and Raccoon,

rachelcreative said...

I'm pretty sure it wasn't easy for you to share these photos with the world. I'm glad you have. A picture paints a thousand words?

I need a picture because I don't have words right now to respond to all you've said. So I'll keep it simple.

You make a difference to me. Thanks for being my friend.

e said...


I'm sending hugs and energy from afar...Take care, and yes, you do make a difference!

Victor Kellar said...

This is why more people need to read this post. This is real, a real slice of your life. Hawaii was real, the squirrels are real, your pain and sense of loss are real. Where else do you find that?

Neil, as of this writing my sister in law's breat cancer has returned, a battle she thought she won over a year ago but she feels somehow stronger now, to fight again and as a naturopathic medical practioner, she is all about state of mind defeating weakness of body, so stay strong, keep fighting, you and your wife

Beth, that advice applies to you as well, of course. Stay strong. Keep fighting. I know you will

Baba Yaga said...

Thank you for reality. It's a rare thing.

I try to keep in mind what's in the gaps - the medical emergencies as ordinary events, the dragging exhaustion... And know my guesswork is inadequate to the task. Seeing a slice of it should help.

Neil, I'm not seeing what people are responding to, but I'm sorry to see that responses are called for. Please remember that you'll need to look after yourself, in order to look after your wife.

cheryl g said...

Linda and I see you during the low times. We are there to help you breathe or get through the seizures. We are there during the heat stroke and the frostbite.

When I share your good moments during Hawaii or feeding squirrels they are immeasurably sweet and precious because I know what price you pay for the moment. Sometimes I am even able to fool myself into thinking you are stronger and getting well. That is dangerous thinking as I am less careful of your condition and you are the one who pays the price for that inattention.

I am glad you are a calculating and ruthless bitch since it lets you push on and LIVE while you live. It lets you play badminton and box and sweat. It makes things like Hawaii and New Orleans happen.

I also have to say you are truly beautiful to me. I look at you and I see your fierce fire burning and it is beautiful.

Raccoon said...

Neil, that's why I made it a question. Although, they did have a lot of good songs. Like "Beth," appropriately enough.

Baba Yaga, in the comments for the last post, Neil mentioned that his wife just got the diagnosis.

I have had two friends, an aunt, and my father, all get it. Okay, so maybe the drummer from Kiss was in good company...

Diane J Standiford said...

I hope you found that publisher, you guys could get dough. I know your pain, not as well as you know it but I know being alone with illness and an ill partner, wondering why not give up, then planning the next adventure.

yanub said...

Neil, I missed the news about your wife. I am sorry, and hope for the best.

Beth, you've accumulated some of the loveliest people on the face of the earth here as your readers. I can never thank you enough for introducing me to them.

FridaWrites said...

Indeed, yanub. :)

Baba Yaga said...

I find I agree with Cheryl. Your fire shines, & that's beautiful.

Victor - sorry too to hear about your sister, but good to know she's in fighting mood. I understand it helps.

Joan K said...

I've been thinking of you. I was in hospital because my 02 levels were too low. I'm somewhat better now, and out of hospital (had swine flu).

I'll send you an Amazon giftcard after the first of the month, when I get my check.

I enjoyed the stories and photos of Hawaii. I appreciate your sharing.


Abby said...

Well, I might be crummy at remembering to write, but I can do Amazon orders so there's a bottle of probiotics on its way to you.

Have been offline for a while whilst getting the computer replaced, so will try and stay in touch a bit better now that we have net access again x