“How are you doing?”

It’s a good day, because I am laughing at the absurdity of the question. Doing, indeed. I’m not. I’m not DOING anything, really. I’ve been reduced to simply BEING…which is a good thing, since I am assured and confident of no other thing, that I am a human BEING, and not a human DOING.

For clarity’s sake and as objectively as I can put it, physically I’m not DOING well at all. Starting a few weeks back now, my “doing” days have been grinding to a halt. It started with just having numb, tingly feet, which crept up my right leg to the point where I can no longer feel my leg at all. It’s like having an epidural on the right side of my body…I can feel some pressure at times, but no sensation, and it feels like a lead weight. Makes walking a bit difficult. Daily it crept up my right side and seems to have stopped at my rib cage, where the numbness feels something akin to a boa constrictor who has decided I would make a good lunch. Then I woke up one snowy Saturday to some really wobbly legs. I waited for that to get better, but each day it got worse and worse, and in just a week’s time I progressed from crutches to one of Phil’s old manual wheelchairs, and as I type this with my numb fingers that feel something like the Cookie Monster’s, I’m chatting with Phil, in the next bed over there, waiting for Mark and Davita to finish breakfast and help us out of bed.

That’s about as objective as I can put it, because if it sounds horrifying, I can assure you it actually is. I find I am spending about 40% of each day just trying to maintain my sanity. I have a job here, and it’s not getting done. Mark is an amazing man, who I give thanks for every day, but he’s  not me…I have things to DO! Not the least of which has been taking care of Phil.

It’s a real mind-fuck to have finally gotten to the point of being okay with the life we have – with understanding that your idea of a vacation is an all-expense paid trip to Children’s Hospital; to be thrilled about a remodel to make the house more handicap friendly; when a new vehicle means a wheelchair accessible van; where going anywhere at all involves researching whether or not it’s handicap accessible. It’s all okay…I love my son, and I am his CAREGIVER. The fact that he needs 100% care from scratching his nose to using the toilet…I can do that. In fact, I’ve made a career out of it. And I’m happy with that. We are a team, Phil and me.

What in the name of Grace do I do when this is taken from me? Not only can I not take care of Phil, I can barely take care of myself. 

In an effort to normalize life, I have been trying to connect with the powers that be that can, perhaps, help me. Social services, disability, doctors and specialists, some of whom will see you – in 6 months.  Some who won’t see you without a referral. The abject FAILURE that our medical system is would be another blog – a book even, and one that I am too pissed off to even write. But once the phone calls are made and contact is established, you sit and you wait. And you wait. And you wait. I am waiting for the hero with the Golden Scissors who can cut through all the red tape. But there is a sinking feeling in your gut when you realize no one is coming.  I wish my dad was still here, because I think he at least had a silver scissors when it comes to the medical establishment. On the upside, I’ve spoken with more than a few medical professionals who were helpful and still remember that underneath it all we are still human BEINGS, and although their hands are firmly bound with the ever-present red tape, they were kind and encouraging.

Now day in and day out of this incapacitation has given me a lot to think about. A talking head. That is what I have currently been reduced to. I have a fatigue that I cannot even begin to explain – words do not convey. I’ve never been so tired in my life – not so much mentally, but as soon as I try to even reach for a cup of coffee, I’m exhausted. I worry about being able to bring it to my lips and set it back on the table. Too much effort, requiring strength I just don’t have any more. Where the hell did it go? I mean, I’m the one who can press 500 lbs. with my legs…whose weight was always more than expected because of muscle mass instead of fat. What happened? I can’t even flex them anymore. Gone from lifting Phil’s 130 pounds to struggling with my coffee? In October I was hiking some of the roughest terrain in the Upper Peninsula…now I can’t even get to the toilet?

Listen, I can deal with the eye thing, it being all dark all the time. Feeling like a vampire, where the light is darker than the dark. Telling Davita to just grab the “dark” shirt, because what I call grey is actually green. No biggie. But this lack of use of the body…I’m just not down with this. I don’t know how to deal with it. I don’t know when I will stop crying over the frustration of not being able to do the most basic of tasks without struggling mightily. I’m sick of the word, “FUUUUUUCK!” It’s like, all I say! That’s how pissed off I am over this, but this is a completely new manifestation of anger.

You see, anger when you have something to back it up…now that’s satisfying. I remember back on the farm, being so pissed off, with no direction to take it. So I went out back of the barn, grabbed a case of canning jars (of which we had thousands) and began to shatter them against the side of the stave silo. Try it sometime…they do not break easily! But oh… to have the power in your arm, fueled by frustration and anger, to heave that glass toward the concrete and see it shatter…what a satisfaction. Now to be angry…and utterly impotent. To be so angry – not at a person, but a situation – nowhere to direct it – no face to tag it to – no fist to shake, or leg to stamp. It simply burns in your chest for a moment and then rushes up my throat to my eyes, and the person who avoids crying at all costs is reduced to the tears she despises. In front of the kids yet, too.

It’s a death. That’s what it feels like. I haven’t had to endure the deaths of many people who are close to me, but I remember what it’s like. It’s waves of grief that roll over you, uncontrollably. You will be fine and conversational one minute, and then the grief wave comes and you find yourself sobbing over something as trivial as a piece of toast. And sometimes there are happier, reminiscing tears. And other times it’s a sense of loss that is overwhelming. Either way, something inside is searching for a sense of normalcy, but what you knew is not coming back.

The difference here is that it’s not someone else who has died…it’s ME. It’s my life that is dying all around me. It’s one thing when a person disappears from the planet. Things grow into the space where they once were, and a new normal arises. But though I’m dead, I’m not gone! I’m still here. Nothing can grow in my place, because I’m still in it…I’m just not anywhere on the scale of human productivity. It’s a bizarre sort of limbo to be in.

And I’m no stranger to giving up hopes, dreams and ambitions as they fade into the past. I first remember being conscious of this when I realized I was not going to be a gymnast. For a long time as a kid, that’s all I wanted to be, and was relatively good at it. Then a move, and a summer away from the gym, and no decent gymnastics program at the new school…it was over. And I mourned the loss. And I realized that there  would be more of these losses over the years…times to say goodbye to things that were not meant to be; consequences of certain choices that I made, taking responsibility for these choices, and trying to say a happy goodbye to some of the dreams that died in my arms.

But this is different still: I don’t know what I’m giving up. I am in unfamiliar waters, and I don’t know where the bottom is. This is not terminal cancer, where they say you have so many months to live.  Suffice it to say the end is death. This is not a spinal cord injury, where severed is severed, and you will not walk again, so accept it and get used to it. No…this is far more ambiguous. Might get better. Might not. Might get worse. Might not. Might happen fast. Might happen slow. Might not happen at all. Drugs might help. But they might not. Do you dare to hope?

I would like to just make my obligatory trip through the familiar stages of grief and get on to the acceptance…but acceptance of what? Where is the nadir? How far to the bottom? Am I already there? How much worse does it get? Will I ever recover? These are questions that have no answers, and as such leaves me in a state of suspended animation. Hanging. Twisting in the wind.

The answers would make a world of difference. If there is a chance that I can get better, then by god I will. I would have no trouble combatting my own body for control of my legs again. I will fight for what is mine with all that I am. But if that is an exercise in futility? Then what? Shall I use the tiny amount of energy I have trying to reclaim something that I simply need to let go of? How much CPR do you do before you call CODE? I don’t know. And that, in and of itself, is enough to drive me insane.

And that brings me back to the original question: How are you doing? I believe I’ve answered that one…I’m not.  But quite frankly, it’s the wrong question. The better question is, “How are you Being?”

Life becomes a series of statements about not what I DO, but who I AM. And it takes a considerable effort not to lapse into a series of statements about what I am NOT, especially when that list seems so much longer. It also feeds the self-pity which I feel oh-so entitled to at times, but serves no useful purpose when indulged in for any extended period of time.

I took the time I probably would not otherwise have taken to put together a video of my children…because a quick look over my life in quest of “I AM”s brings me face to face with my kids: I AM a mother. Nothing can trump that. Not disability, not even death. A huge portion of my life has been invested in these lives, and that’s a forever thing. To see them succeed – to see them grow into the people that they are – to be a part of their lives as they do…this is a forever thing, an investment that cannot fail. To watch them sail…this is an inspiration and strength that is hard to convey, but real enough to keep me this side of crazy every day.

Then things become a little more ethereal. When you are reduced to this level, you can no longer rate yourself on the scale of human achievement. You can only rate yourself on the scale of human. We live in a culture that has conditioned us to believe that we are what we DO. Our value is based on our contribution to the work force. Our activities and associations define us. To lack these, then, is to lack worth. And in my pitiful contemplations, I have wondered why I cannot just stop off at the vet and have them put me to sleep.

I don’t yet have the answers to these questions. I know they are forthcoming, however, because a quick review of life itself shows evidence of that. Every time I’ve been in a shit situation…I come out of it. The saying of the ages is and always will be true: “This, too, shall pass.” Treat yourself to looking up the origin of that saying.

Realizing the truth of that, I look at a day like yesterday, and so many things become a bit clearer. I cried all day. A wave of grief and frustration that rolled over and over and over me. Nothing in my “positive thinking” arsenal worked. I could not under any circumstances or thought pattern dry up my eyes, or the pressures in my heart that kept up the flow.

Today I realize that that is the way it’s supposed to be. Which one of us has not succumbed to this place of tears for one reason or another? Who never cries? Who is happy 24/7, 365 days a year? No one…and we are not supposed to be. Life is not that myopic. Joy is not nearly as joyful unless contrasted by the sadness that accompanies life on this planet. We all do – and we all are SUPPOSED to have times of grief. It’s what makes us human….the full spectrum of human emotion and human experience. How we deal with it, I suppose, is a leading indicator on how it will turn out in the end. Am I the victim of my life and times, or the owner of them? Undoubtedly, I choose to see myself as the owner…the author of my own story. Woke up in a chapter that I don’t care for, but it’s only a chapter. Or two…whatever…it’s all part of my book of LIFE that runs the full length of my keyboard. What would the purpose be of life lived solely on middle C?

But this leads to a social issue that we have not come to grips with. How do you deal with people in the throes of grief? We have been taught, somewhere once upon a culture, that crying is bad, sadness is something to be banished and gotten over, that anger is a fault and a sin. No doubt anyone can go overboard and become a permanent sad-sack. Equally as annoying as the person who is ALWAYS happy and overly cheerful. We know that is not real. Just as we know in a world as beautiful as ours, perma-sadness is not genuine. These become a choice. But when they come of their own accord, unbidden and unexpectedly, we need to not only let them flow, we also need to see people experiencing them as normal. And we need to be there for them.  

But how, exactly, do we do that? How many times when we meet someone in a grief state do we say, “If you need anything, just call me”? And it’s a great thing to say…because it reflects this desire of a healthy person wanting to help another through an emotionally rough time. But put into practice, it’s just weird. Picture the following conversation.

“Hello, Maude?”

“Yes, hi dear. How are you?”

“Well, actually, I’m not really well at all. In fact, I’m having a complete mental and emotional breakdown, and I was just thinking about the time you told me to call you if I need anything? Yeah, well, the house is a mess and the kids need dinner and the laundry is piling up and me, well, I’ve been sobbing all day and have a terrific headache. I feel completely alone and run-over right about now and gosh Maude, would it be possible to just come over and give me a hug or something?”

Yeah…it’s kinda awkward.

But from the vantage point of my couch here, I’m seeing what made the difference between today and yesterday, (although the jury isn’t really in yet today…it’s just early) and that was a half-hour of just being held and allowed to cry. It was my daughter taking care of dinner. It was Mark bringing me the towels to fold. It was an encouraging e-mail from my sister. It was a card from my mother. It was a sympathetic social worker. It was the ability to cry in front of these people and not feel bad about it. It was about them not just staring at me and feeling sorry for me…it was acknowledging that I hurt in one way or another, and that it was okay to hurt. It didn’t make me less of a person, or a weakling, or a big baby. It made me a person in need of other people, and those people being okay with being needed, because that’s the way human beings are designed.

I’m not talking about a chronic neediness, or the people who never find a reason to be happy, or the victims of life who never take any responsibility for their very lives. I’m talking about the people who, like me, love life, and have vowed to live it to it’s fullest, and then for one reason or another find the legs cut out from underneath themselves and struck down. You just need someone to come along side. Sometimes it’s to help you back up, but sometimes it’s just to sit and hold you while you cry. Or cry with you. Or keep you in a steady supply of Kleenex. They cannot diminish the actual pain, for that is yours to experience and bear, but they can encourage you with the fact that “this too shall pass”. They are not in your space of pain, and are something of the world outside of it to hang onto. They stand as proof positive that this hurt isn’t forever, and it isn’t universal. And they can hang onto you until you make it to the other side of this pain-pool. It’s those people that realize how normal it is to experience shitty things, and that they too have had a turn in the chute and will yet again…they make the difference in a day.

So how am I? Today I am out of the race. And I don’t really know how long I’ll be here…but I do know that I will – ultimately – be fine; whatever that shall mean at the conclusion of this situation – for all its variables and questions. It shall pass, and I will be okay.