Postcard From Hell

  Think back with me to a time in your life where it seemed like the worst…the end…the bottom…the box canyon with no way out. Take a minute or two to contemplate that time in your life. The pain, the anxiety, the frustration. Now…think about what has happened since then. Well, if you are reading this, you obviously survived, right? And if you are like most people there is a good probability that you have even thrived in spite of it. You learned something. You grew. You may have lost something, but you gained something else – which was probably of greater value than what you had to begin with.

The conclusion of this little mental exercise is to show you the solid evidence that you have, in fact, survived your own life to date. You did not die. All was not  lost. In fact, if I were to ask you if you would trade your most harrowing and painful experiences in life for “better” ones, you would probably decline. Somewhere inside you know that you are better and stronger because of them, and you wouldn’t trade them for anything. They have been an integral part of making you into who you are today and are therefore of inestimable value. No doubt that you did not see this happening at the time, and handled it however you are inclined to: cursing this or that, insisting that this incident was more than you could handle, begging God to take it away, kicking against the goads, as it were. But you made it. And you are the better for it.  To say this is not true in your life would just tell me you have unresolved issues, because this is what has sustained me – and continues to – in this particular time in my own life. Knowing that I will see the benefit to my soul, spirit & life in all of this by looking at the past empirical evidence is a comfort to me when there is so very little that I can stand on.

So where did I leave off on this telling of my story? Off to see the Wizard of MS as I recall, with failing sight and legs that had been cut out from underneath me by an unruly central nervous system. As I write this, it seems like such a long time ago already. April 11^th, I think. Long story short, although he has nothing more in his bag of tricks than the next neurologist, he seems to have a much better handle on just how the tricks work and who will benefit from what, instead of the previous doctor who suggested I just stick my hand in there and pull out whatever suits my fancy and give it a go. He prescribed the dreaded Tysabri – a tier II medication in the MS world; the big guns, which are used when the tier I drugs have either failed or would seem to be inadequate. Since it carries some potentially fatal side-effects, I was less than enthusiastic about it, but they took the time to explain these in medically explicit detail to my satisfaction, and how I was not really a candidate for these to happen, and my risk factor of any side effects was actually quite low. I signed all the papers and agreed, and they were off to the insurance world of red tape, where it took a few weeks for them to decide if I was worth the financial cost of treatment.

I came home from that visit and decided that I had reached the bottom of my physical deterioration. I determined to get better, starting now. I had been approved for physical therapy for my disappearing legs, and so on the Tuesday after my appointment with the Wiz, I gave it all I had. No stranger to working out, I was determined to make my muscles do what they were supposed to do. What I learned that day about the cooperation of the muscles in the body was amazing. Who knew even your shoulders will rally to life to lift your foot? I also realized that where the bottom is was not mine to decide.

Wednesday I woke up and felt completely destroyed. I could barely move. I figured that I may have just over-done my therapy, and Thursday would see some improvement. Wrong again. Even my eyesight was worse. By Friday, I had serious doubts as to whether or not I would even survive this. I was reduced to lying in bed, staring at the ceiling that I could not see, unable to even roll over, too weak to stand up unassisted to use the commode. This, my friends, is a scary place to be. Unable to see the numbers on the phone, Mark dialed the Wizard’s office, only to find out that the insurance gods had still not made a determination as to whether or not I am worth saving, and a kind nurse there suggested a trip to the ER if things did not improve.

I presented to the emergency room with an inability to raise my foot off the bed, a right side that was completely numb from the chest down, hands and feet that were on fire and lacking proper sensory feelings, vision that had been reduced to blurry, pixilated silhouettes, an invisible iron band around my ribs, several other symptoms of a more personal nature, and a sense of gallows humor that was mercifully still intact. After giving the list of symptoms, I was treated to an IV, a chest x-ray, an EKG and a urinalysis. After several hours and a consult with the Wiz, we got the good news and the bad news. The good news: I am not dying. In fact, according to the lab data, I was probably the healthiest person in the ER that night. I simply have a central nervous system error. The bad news, there really isn’t a damn thing they could do about it. They suggested an IV of high dose steroids, which I was too pooped to refuse. As I predicted, they had no effect, but it felt at the time like bailing at least a bucket full of water out of my sinking ship.

I went home that night, grateful for the good news, but cannot describe in this little recap how helpless I felt over the fact that there was nothing more on the agenda than sit and wait. Even when the powers that be decided they would give me a sporting chance at the medication, they were quick to point out that Tysabri does not alleviate symptoms. The whole point of it is to keep the symptoms away once they leave. The leaving would just have to happen in its own time…if at all.  

And so since that day, it’s a day at a time. Wake up and hope that something will have changed. The Tysabri IV went fine, with no ill effects that I noticed. Slowly, I have been regaining feeling in my legs and right side, and the strength in my legs has been returning. My eyes continue to be functionally blind, and it’s only with the aid of a zoom feature that I am able to be typing this with a full screen of kindergarten-size font. With physical therapy I was able to get up with a walker, and have progressed now to walking at home with a gait we fondly refer to the Zombie Mom Shuffle.

Having updated most of the fun details of this vacation in hell, I have come to the understanding that I can no longer confine this to a blog, and have determined that I am going to put it into a book. For a few weeks now, I had been unable to even look at a computer screen for the brightness, and nothing was there when you did turn down the contrast. I was left to figure out just what does a person do who cannot see or walk? When the people you depend upon for your most basic functions have done their job, and you are left alone, you have no choice but to sit and think. And with me, well, at least I never run out of stuff to think about. It’s just the outlet that I lacked – and that was maddening. I felt like I lost everything, including my “voice”. But I do know that one factor in this remission, or recovery, or whatever you want to call it has been my attitude, and I don’t say that to blow my own horn – because it’s not as complimentary as it may sound. I’m just sick and tired of this shit and I have decided somewhere within my being that this whole handicapped thing is not for me. I’m pissed off a good deal of the time, and have decided to let that anger turn into something else.

I have an up close and personal understanding of just how much our minds influence our condition. And this nasty-ass disease has given me a golden opportunity to explore this, because unlike my son and his pet disease, this one has not just a lot more question marks, the whole thing is nothing but a question mark. Which means that I get to fill in the blank. What causes a remission? Straight up, they will tell you they don’t know. Is it the medication? Is it supplements? Diet? Lifestyle? Or just your prodigal nerve cells deciding they will come home after all? Since even the all powerful Wiz can’t tell me that, I am going to take it upon myself to fill in that blank and believe that it is, in fact, all inside my head. The manifestations are real enough, but so is my attitude.

A while back when we had a roll-in shower installed for Philip, I was tending to natures call and staring at the newly tiled floor. I was so overwhelmingly thankful for the bathroom remodel, that I told myself every time I look at this floor, I am going to be grateful. And for a while that was working quite well for me. After all, between me and Phil I visit the room several times a day. But it got a little harder as things progressed from bad to worse here. But I didn’t quit. For all the days I spent bitching and complaining about my plight in my head, that tile floor was there to remind me to be grateful. We’ve had several one-sided, heated discussions about why I should be, but as they say, the house always wins.

I can still see to navigate. I have some amazing people in my life. My kids are all doing well. Philip is still healthy as can be. I can still laugh. I can still love. I am still alive,  And for the past couple of days I realized I have something to write. In fact as I attempt to write this today, I realize that I probably have an entire chapter for each sentence in this note.

My eyes are letting my know that they are about funned out on the bright light and faded, choppy black letters for now, and I cannot publish without editing…(I’m a little OCD that way)…but I want to say a sincere and heart-felt thank you to everyone who has prayed for me, adding to the bank of positive thoughts I can draw from, as well as the multitude of people who have helped me in the tangible realm to just keep the wheel of my life turning. Words are not enough, but sometimes they are all we have, and I extend them from a grateful heart. Please feel free to continue, as the woods are still dark and scary at times. Pray for my family, too, as they attempt to pick up the slack of a lacking mom, for Phil, and for Mark, who is everything and more than I could have asked or hoped for in a supportive partner – for better or worse, in sickness and in health. He is my "Jesus-with-skin-on", my encourager and my light when I get into dark places. 

Again...so much more to share...I will keep you posted...

New Coordinates

Okay – to start with the facts and move on to the figuring. New Dr. appointment goes well. I think the man actually cared – imagine that! Is in the process of retrieving all of my medical records and only asked me for a release instead of being my own courier system. I’m impressed. Reason being, he is not sure that what I have is, in fact, multiple sclerosis. It could very well be another syndrome- Devic’s disease – and have I even been tested for that?

While he’s now doing that – and hopefully calling me back with results – I’m back at home doing my own research. Unfortunately, I can’t really see usefully at this time. Both of my optic nerves have decided that they have better things to do than properly interpret my environment, and this past week the computer has become almost unbearable. (I’m writing this in mega-font…and the editing may be noticeably lacking :-/ ) But on the upside, I have discovered YouTube in a whole new way. What you cannot see, you can listen to. When you start looking up medical stuff, you end up with some GREAT lectures, that most people would consider boring. However, it is real brain food for me to listen to a researcher/doctor lecturing to a whole bunch of collegues about new findings. For those that don’t know me, this puts me back into medical terminology, which is my formal education and my passion. Especially when you got this shit coming and knocking down your door, trying to ruin your life. My sister said it well…Let’s get a name on the dragon before we try and slay it. Turns out, the Mayo Clinic has a whole symposium  on rare neurological conditions, of which this Devic’s syndrome is one. I listened to several hours of it.

Long story short, it’s not great news, in that it’s way worse than MS, as I am knowing in an up close and personal kind of way. Basically, you suddenly lose your sight and legs, possibly your arms and breathing, in a matter of days, they try some of the drugs that have worked in the past,maybe swap out your plasma for some that isn’t confused about what to attack and what to leave alone,  and hopefully you get better. But like MS, it will leave all kinds of parting gifts for you to cope with for the rest of your life. If you are unfortunate, you will have relapses at completely mysterious intervals that will leave you again, with consolation prizes. At some point, respiratory failure occurs. If you are lucky, you will have a monophasic type, have it once and get over it…end of story.

This is, of course, just the box. We don’t even know that this is what I have, but in the event that it is, this is the preview of what’s in the box.

But they gave me a box for my son called Duchenne about 10 years ago. And I’ve had a box called an omphalocele handed to me for my daughter 24 years ago. And both times I have refused the box and with better than expected results, so I think that’s the take I’m going to go with on this. We live in a world of infinite possibilities, and I refuse to tie up my hopes and expectations in a package of medical misery.

I do have another appointment with Wizard of MS – a highly acclaimed physician – on April 11^th, so we’ll see how that goes. In the meantime, I just have to get through every day with no eyes and no legs for all intents and purposes. This is where the facts end and my figuring begins.

Through no choice of my own, I have taken my paradigm shift to a whole new set of coordinates, and I am learning a whole new appreciation for this latitude. I have been an advocate and an informed person about this whole wheelchair thing. I just never expected to be the one IN the chair. Not for any length of time anyway.

I have suddenly come to know a reality that you simply cannot know until you have experienced it in your own flesh. As walkies, we can observe, or in my case, even live with a wheelchair-bound individual. You can only sympathize and imagine what it would be like, to have the entire top half of your world disappear, as it were. I suppose that for all the times I contemplated and tried to empathize what it would be like to be in Phil’s place, I’ve had no friggin’ clue. Sitting and waiting for someone to do something for you…the inability to just reach across the counter and grab the toilet paper that is out of reach…feeling like a burden, and feeling an acute lack of a contribution to the household. Having no place to go and nothing to do but take a walk inside your own head and think…and think…and think. To feel like you are on the outside, looking in, just observing the world that you don’t feel like you are a part of anymore.

I rolled into Phil’s room this morning to wake him up and his first request was for me to scratch his head for him. Talk about a reality check for me. I suddenly felt fortunate..I was still much stronger than he is, capable of scratching my own head. And I had to excuse myself to go and cry, because I was suddenly filled with an “Oh my god” moment: How does this kid EVER wake up in a good mood? He’s not even hoping for the latest, greatest medical breakthrough to get him up and back on his feet. He is old enough to have contemplated the Valley of the Shadow, and his future walk through it, as most of us don’t do until we are much older. And yet he smiles.

And I know that part of the smile is because of me. Even though I cannot do the things I was doing a month ago, I am still a comforting presence. I’m MOM. And that will always be something.

It’s been a difficult and emotional time for us both, I think. For me, it’s realizing I’ve been experiencing a plethora of “last time”s.  I remember when I realized with my last two children the very last time I breastfed them. I was so sad. And life is kind, in that we are seldom aware of the infamous “Lasts” as they occur. We get to mourn or rejoice over them at a later date when the realization catches up with us. And with nothing active BUT my brain, well…the awareness is mixed bag. There are many things that I have no idea about the future of…and so don’t think about them in terms of the last time. But there are things I know will never be the same…things I know I have to let go of. They are just not part of life on these coordinates.

Letting go is the most perplexing experience I know of to date. On the one hand, it is the hardest thing to do. On the other hand, it is utterly and completely effortless. All one must do is be still, and let go. Watch the thing that we held dear fall from our open hand into the stream and drift away on the current. And yet somewhere inside of us is a hysterical, screaming, struggling person, grasping blindly as it floats away…our fingers close up on air. And all we can do is cry. And once again…take that woman by the shoulders and let her go.

It’s hard to see other people doing my job. They don’t do it like I do. I dare say that I do it better! After all, I’ve pretty much made a career out of caring for my son and the rest of my family. What a mixed up place to be insanely grateful that they have stepped up to cook dinner – how horrifying to see something that came out of a box! What a relief to have the laundry done…but that is NOT how to fold a towel. I’ve shed tears of gratitude for those who have gotten Phil up and down…but they didn’t position his pillows the way I do, damn it. So does this make me the hardest person to live with suddenly?

A valid question to ask myself, but the answer is no. It’s all a part of the letting go thing. Will I die if I eat the Hamburger Helper my daughter made, instead of mine from scratch? No. Is the improperly folded towel still clean? Yes, it is. Is Phil still comfortable enough to sleep through the night? Yes. My priorities have definitely been shuffled, and what is truly important is rising to the top, and gratitude for the people in my life is some sweet cream.

Life has slowed WAY down for me, and is simmering down to its very essence. Kind of like moving from Chicago to New Guinea…not the same. Who knew life was still life, even in ultra-slow motion? More important still, who knew that it was okay to move so slow – in fact, that parts of life would become richer than ever? That appreciation would taken to a whole new level?

This is where I find myself today…in a relatively dark and motionless world, and it is my choice to either sit here and mourn it, or take the copious amount of time I have here and explore a bit. Life’s decidedly not over and there is much left to learn. Today I am grateful for my “classmates” and “professors”, and for those who arrived at this place before me, who are teaching me a brand new way to LIVE.  

“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.