Paradigm Shifting...Again

So I suppose that I am finally ready to write something about all that has been going on lately, because today I have a good perspective. And I just had to wait for that, or things of this nature just become another complaint, whining and crying, and certainly don’t add to a positive thought pattern or outcome, now, do they?

My situation, when compared to the life that one plans for oneself in the way of ease, comfort and pleasure is just not turning out as I had perhaps imagined it should be. At this age, I supposed I would be in a much different position as I made choices through my life. But many of my choices have lead to circumstances that I did not anticipate. How could I? And I have no regrets about such, when I take my own advice and view my life as a book in the writing, it’s quite the read, and I am a better person for all of it.

But there have been several situations that I did not choose that have not been the result of any choice that I made. The kind of things that no one signs up for. The life changers, that cause a necessary paradigm shift in all that you previously thought and believed to be true. We don’t choose to miscarry a child. We don’t choose to have children born with birth defects. We don’t choose to have a child born with a genetic incurable degenerative disease. And we certainly don’t have a big choice in the matter when another scary acronym for one of the same shows up on your own tests: MS.

My story starts a long time ago, I suppose, with weird symptoms here and there. But many of those were like asking me if I had a ghost in the house. With this many kids and this much to do, who would know? I would blame any paranormal activity on the normal actions of an active household. So I had a twinge, or a dizzy spell, or a bizarre ache or pain…that’s life. So what? Being well schooled in home medicine, I’m not one to run to the doctor for every ache and pain. But the few times I went in, I was assured that I was fine, and that’s what I wanted to hear, so it was all good.

But a few months ago, the vision in my right eye just up and quit. No pain, just no vision in the upper half of my eye. For a week or better. That sent me to the ER with a probable diagnosis of detached retina – until they saw my retina was fine. A date with the MRI machine and an ophtho- neurologist found me to have lesions on my optic nerve and brain consistent with optic neuritis. Simply stated, the coating on my nerves has been chewed through in places – courtesy of my own immune system – and are causing inflammation of the nerves in those places, and as a result, it shorts out my vision. The only treatment at this time is a course of extremely high-dose steroids with a two week taper, which my body had no intention of accepting gratefully.

During the first course of this stuff, I began to suffer a myriad of other symptoms, the worst of which were a gross imbalance in my gait, and something that I can only describe as mini seizures, which would cause me to stop everything, while gravity pulled me down to the left. My speech would slur (if I tried to talk through them) and if I was not careful, anything in my right hand would hit the floor. During this time I had a lumbar puncture to see what was going on in my spinal fluid, and sure enough, oligoclonal bands are there – and they are not supposed to be. Unless of course, there is a disease process of some sort going on…specifically multiple sclerosis.

The worst symptoms gradually abated – but not all. My vision field was full, but the color and contrast was all off – a bizarre combination of too light (requiring sunglasses) and too dark – couldn’t differentiate a damn thing. Another MRI showed some more shiny spots in my thoracic and cervical spine, where the the immune system mice have been hard at work.

On December 21^st, the neurologist told me what I had pretty much already figured out, and gave me a book-bag full of drug company literature about the treatment options available to me, and a week to decide which one I might prefer. All of them are injections – daily, every three days or weekly. In a conduit of Chinese hamster ovary DNA, one primary side effect is depression, and the best test results in double blind studies show an increase in time between relapses could be increased (by how long is not certain) is up to 39%. Now, if I told you that the chance of rain today is 39% tops, would you bring your umbrella?

Off to the internet, where my medical transcription training has served me well in finding the reputable stuff. But surprise, surprise…most of the drug company literature is so very favorable. Other drugs are available in other countries, in off-label usage with safer drugs with less side effects – but good luck finding these here, or a doctor willing to prescribe them. I find that in the generic information on MS in general – it’s just that…general. Generic. Could be, would be, might be….

And so now it’s off the chat rooms and MS groups. These places are not to be poo-pooed, as it seems they are by the medical establishment. In my experience with Duchenne muscular dystrophy, I have found these to be an extremely valuable resource. This is a disease that has a generic course, also – and it fluctuates wildly in its manifestations. There are men in their 50s with it – some boys go home as young as 13 or 14! No cure – but hundreds of treatments. Some quite controversial…but there is no substitute for conversing with people in all camps and finding out what worked for them, what didn’t, and comparing the similarities to your own son. Many things could be avoided, many things could have been implemented – and you only learn this from sharing with people who are on the same road. There are even lots of variables within the disease – such as differentiating Duchenne from Beckers, a milder form of the same thing. Now I need the input and support of those who have gone before me on this particular journey – and the results have been sobering. Suddenly DMD seems rather stable, because  it seems that for as many people who have been diagnosed with MS, there are as many experiences – and they are all over the map.

The most common form of this particular disease falls into a category labeled RRMS – Relapsing-Remitting multiple sclerosis. In other words, you will have a string of symptoms, which can range from bothersome to incapacitating, which spontaneously resolve, and go into “remission” for an inderminate period of time. If the uglies show up again, they can show up uglier than before, or bring friends, or not be so bad at all. Sometimes they can leave parting gifts of permanent nerve damage. Sometimes not. Enter the pharmacueticals, which are supposed to put a bigger gap in the sequence on the side of the good days. Sometimes they do…sometimes they don’t. Sometimes with no drugs, you go years and years with nary a symptom. Sometimes a few years of your life get eaten up with a persistent series of relapses. You just never know. And sooner or later, it catches up with you and takes you down – but hopefully not until you’ve already pretty much lived out your years anyway. 

But then there are other types, progressive MS, which come to stay. It sets up housekeeping, and your immune system embarks on a seek and destroy mission of in intensive nature and thrives on all the myelin it can consume. And your symptoms progress from one form to another – new challenges appear daily, until you can’t function. Then I suppose it’s time to put your affairs in order, and begin your paradigm shift once again.

On my diagnosis date, I tell my doctor that my left eye is now losing its vision. Most of the field is there, but it’s very dark and smeary. He says nothing. What can he say? Tell me how it is in a week. In a week, it’s worse. I cannot read for more than a few minutes. I have no peripheral vision at all, and big spot of black light in the center. My right eye is okay, but we are binocular people…our eyes see two images and then send the signals to the brain, via the optic nerve, to make a singular picture out of it. Except my nerves are not in a cooperative mood. The result is a frustration that leads me to wanting to rip off these clown-distorted glasses – but they are not glasses. They are embedded in my head and cannot be removed. It is the way that it is. Deal with it.

My options are limited. Wait for it to go away. Try another dose of the heavy duty steroids that kicked my ass and turned me into a “sick” person for two weeks. I wait. And wait. Another day. Each day I wake up and hope I can see. Each day I wake up and I can’t. Then more fun symptoms show up. Each time I look down my nerves treat me to my own personal taser attack from my head to my toes – something called Lhermitte’s sign. Then the skin pain…oy vey. Anyone who knows me knows that I have a considerable area of my body tattooed, and this pain makes that feel like a massage. Gotta stand up slowly so I don’t get dizzy and go right back down. But mostly – it’s my eyes.

I finally spend a few days shaking hands through the cycle of grief. I know all you stages so well. Rather than grievous freak outs, I spend some time in the living room of each stage, talking things out with the occupants there.

Hello, Denial! How’s it going? Yeah…this is not that big a deal. Just a hand in the deck of cards. We’ll play it, make the best of it…we have so many other things to deal with, right?  Not much to say – so yeah… I’ve got to take care of Phil now, so hey – keep it real, right? Just a bump in the road! See ya later!

Next stop on the trip is anger. Went to visit one day upon awaking – sure that I would be able to see better. I can’t. Fuck! This sucks! God damn it! Can’t I just stop this shit? Tear off these fucking 3-D glasses and blurriness and darkness and turn the lights on and fucking SEE?!?! I have a kid to get off the school…and food to cook…and shopping to do! I have no time for this! I’m sitting in angers living room venting, and he’s just staring back at me with a half smirk on his face. Don’t know what to tell you, kiddo. I have a big barf-bucket here – I can take it…just let it all out. And I do. And I’m thankful that Mark is willing to let my pieces fall to the floor, and pick them up later and offer them to me when I’m able to put them back together with a bottle of glue. No condemnation.

Off, then, to the bargaining table. I don’t spend a lot of time here. Because the person in the other chair is just me. A better version…my true version…my Spirit.  The best example of what happens here is reflected in the Garden of Gesthemane, when Jesus, face to face with the magnitude of the task before him asks His Spirit if they could, perhaps, switch to a Plan B. But the conversation is spelled out for us. This was the plan…from the foundation of the world…remember? He doesn’t want to remember, but has learned in his 33 years trust His Spirit. This is decidedly NOT what his physical body wants to experience – but before the world began, they planned this out, and it made complete and total sense in that space of perfection. And he concedes…”Nevertheless, not my (physical) will, but Thy will be done.” And “THY” was His own Spirit.

In my own case I am reminded that I did nothing to bring my life into this world. For nine months I was totally taken care of. I gave no thought to my eyes, my hands, my form. It was crafted and created by loving forces in secret. I was born, and for some reason my consciousness decided at some point I had to do it all myself. But I’m mistaken. The same forces that formed me in secret are still at work, doing the work that was contracted to do in my Life between Lives, making no mistakes, screwing nothing up. It’s in this I must place my trust. And there is no bargaining conversation. Just a few knowing looks, a few tears, and handshake, and a long, loving hug. I am dismissed to discuss the situation with depression in the next room.

Upon arrival there, I am no longer angry. I have nothing to say. Crying kind of gives me a headache, so I just sit and contemplate my paradigm shift. In case you are at all unclear about what I mean by that, your paradigm is the way you think before you think about something. If I tell you that I let my daughter leave “formal” education at the age of 15 and go 2000 miles away to train with a horse trainer, your paradigm will immediately suggest that this is a mistake, and that 15-year-old girls belong in school. Why? Because your society has told you that. This is your paradigm. And you could give me a long list of the reasons you have held onto that. I, on the other hand, six years later, can tell you that my paradigm shifted, and that it’s perfectly okay to pull a kid out of “formal” education and send them into the world in the area of their obvious talent, and that unlimited success can be the result. I can tell you that in my new paradigm, the results can be extremely gratifying, and that while all the choices for “good” or “bad” are still there, they are of a different style and caliber. And an education is decidedly NOT limited to the cinder-block walls of our factory-education system, and her education is still an education! In fact, this child has an education that most of us can only wish we had pursued.

Well, now the paradigm that needs changing is one that assumed that when you are the caretaker of a handicapped child, your own health is assured for the duration. Kind of like a “Get out of sickness” FREE card. You are needed, and surely the powers that be will keep you free from disease. My paradigm is an assumption that my health has been mine to maintain, and that I actually have control over it. But I don’t. My body is reminding me daily, that for all my great ideas about maintaining a healthy lifestyle, it remains quite out of my control.

I invited Acceptance to join Depression and I, and he graciously agreed to do so as I made my decision to go for another round of the steroid therapy. Whatever it takes, I want to see clearly again. Bracing for the worst, I put my life on temporary hold for two weeks. I am currently on my third day of the Methylprednisolone grenade IV, and to my delight, I have had almost none of the wicked side effects…yet. The 17 days of Prednisone is yet to come. However, each morning I wake up and still have no improvement in the vision in my left eye.  

I conference with my friend, Acceptance.  Where is the remission? Am I ever going to get one? It’s been three months now. Is this permanent? Is this NOT relapsing-remitting? Is this the start of a downhill run for the old body? Will I ever see right again? Will my vision ever come back? I don’t know. And today, I’m partially okay with that. I don’t want it, but I didn’t want Duchenne as part of my life, either. But what I’ve learned in the years of dealing with that is that was HAVE been healed. We have been healed of the need to be healed. We have accepted that this is the way Phil is, this is what we can do, this we can’t do…carry on. LOVE him…every day, in every action. Ta-da! Instant cure. No need to kick against the goads and bloody our feet with attempts at making his body like everyone elses. He's got what he's got – we can’t change that, and I’ll not spend our lives in the futile attempt to do that. We have today, and the sun is shining, and he is capable of smiling, and we are going to do everything we can to accentuate that. We are going to smile when he wakes up and make gross 13-year-old jokes about getting out of bed, to the toilet and dressed. We are going to cuss at the Hoyer which I have to use since my arm is tangled up with an IV line, and laugh some more about how his butt hangs down in it. We are going to spend way too much time getting him adjusted in his chair to his comfort level, and adjusting his pants to that they look just-so. I’m going to change his games for him, and cut up his food, and help him eat, and criticize his finicky-ness while he criticizes my cooking. We’ll laugh at the dogs, and be sad about the lack of friends that he has in school, but then we’ll knock off early and watch some movies together, have some popcorn and hot chocolate. It’s just our life…and we have accepted that.

Now it’s my turn to go and do likewise. Whatever is up ahead, Acceptance reminds me of the choice that we made before the “foundation of the world”. This is all part of bigger picture. I need to back up and look at the book in my Spirits hand, which reads, “The Life and Times of Sally Molitor”. The ending is already in there. The first 47 chapters are amazing. They are interesting. It’s a great read. It’s like a movie – and all the crap you watch a character go through in the best movies ultimately leads to a wonderful and climactic ending – where all the pieces end up fitting – and you finally understand. Even when the hero dies in a fashion that we deem was too soon, you feel like a better person for watching/reading it. I am the author of this book to the degree that I will either choose to spend my life trying to fix what I cannot, in all it’s desperation, heartache, and disappointment, or I will accept what I’ve got and make the most of it. I will look at the sunrise and sunset, and be about the business of living.

I’ve got a new wood cookstove to play with. Our financial status has us down to living on the very basics of life, and that can be very gratifying, going back to a life of simplicity in the midst of a paradigm that tells us more will make us happier. News flash: It doesn’t. Still another paradigm shift I’ve accepted. 

I have children who are healthy and happy, and currently scattered about the country writing their own biographies – and what grand stories they are! I talk to them almost daily, and am happy to have graduated from parent to trusted advisor and friend with most of them. Parenting is, after all, a spectator sport after a certain age. I have grandchildren to consider, and a pack of pooches to love the stuffing out of. I have the love of my life to take care of me – and I him, who understands the ups and downs of the whole dynamic here who encourages me, and inspires me daily. Sure, we have a whole package of problems that may seem insurmountable…but none of us can do anything more than live one moment at a time – and it is enough. And when I open myself up to trusting my Spirit, I realize the truth of that. I have a small cast of characters who have touched my life in ways that have altered the course of my life in such wonderful ways. And today, it’s that gratitude for ALL THAT I AM that gives me a smile, and a peace, and an acceptance that this IS my life! And life is for living – whatever that looks like in any given moment – that’s what we’ll do…is LIVE.