Peeing my Pants on the Road to Spiritual Enlightenment, a Journal Play about MS
Bare stage. Play opens and we see a large balled up white down duvet centre stage, not revealing the person within. Slowly a head and hands are revealed. She speaks.
I was having this dream. Not the floating or flying dream. The walking dream. I was walking on a long sandy beach and I felt strong. The sun seemed to be a part of me, sinking into my pores, feeding me somehow. I was that golden brown sun-kissed colour. Not orange like from a tanning bed. I was like one of those commercials where the girl is walking with a thin cotton dress over her bathing suit, and a tropical breeze teases her legs and lifts her dress. And she’s always smiling and confident and free. I was that girl.
She rolls over, still balled in the duvet. She rests on her elbows, peering out at the audience.
Then I woke up, and fell out of bed. No, seriously, I fell out of bed. I’ve been doing that a lot lately. Now before I fall out, I try to take preventative measures. Every morning I make a concerted effort not to fall out of bed This is what I do.
She flips on her back, sitting up on her elbows, then starts to push her feet out of the duvet.
I stretch my legs out, slow at first. I watch my right leg jump back and I wince. Crazy legs. I have crazy legs. This really hurts. My body is so stiff and I always feel hung over in the morning. Like I must have had a good time the night before. Not so. I don’t drink that much. Then I pull each leg up to my chest, if I can. And I full out stretch like a surf board, trying to feel my legs attached to me. Willing them to co-operate.
And the really pathetic thing is, is every day is different. I cannot count on how I will feel each and every day. I remember not long ago, a glorious spring day, and I couldn’t fully enjoy it because my legs were too weak. I couldn’t go for a walk with my little girl, and I didn’t hide it because I’m not one of those pretend moms who keep things from their kids. I tell her. Mama’s legs are tired. I have to sit down. So we sit outside for awhile and I watch her play in the driveway. She’s happy, and I am tired like I have just run a marathon. But really it’s just because I put in a load of laundry in and I emptied the dishwasher. It could be worse.
Now I do sound pathetic, like I want people to feel sorry for me. Please don’t. It is what it is. This MS thing didn’t occur because I’m a lapsed Catholic, or because of some kind of Karmic interference. At least I know that. Maybe MS happened because I’m supposed to learn something. I hope so. But what a lesson. Sometimes it hits me hard – the reality – and I think, oh my god this is it, this is my new normal, I can’t walk very far, I can’t over-exert myself or sit in the sun too long, and this is forever? It’s not like I broke my leg and it’ll heal. There is no cure for MS and they don’t know the cause. How did this happen to me?
When I found out I had MS in January 2008, I started feverishly studying the cause and potential cures. There are a couple things I do subscribe to, and that is diet and exercise. I believe you are dead in the water without those two things. But there are no guarantees and therein lies the struggle. I discovered the Swank diet like many others. It was developed by Dr. Roy Swank over thirty years ago, and at this point they’ve got positive results from the people who followed it. However, being painfully human, I have not followed the Swank diet perfectly because it is really strict. But I do stick to a few basic rules: no red meat (the first year), very low saturated fats (no junk food, processed crap), high good oils (olive, flax), minimal dairy (I love cream in my coffee so I fall off the wagon there), and lots of leafy greens. So the diet is fantastic for everyone, it’s just a matter of changing your lifestyle a bit. Luckily, I have a husband who’s a great cook and doesn’t like my cooking. Clever huh? Unfortunately, when he’s away I tend to eat Kraft dinner (bad) and hotdogs or bologna (very bad). I’m just being honest.
Oh sadness. Have I touched on that? I get so sad and I don’t know why. Is it because I can’t do normal things for fear of falling over? I have lost the ability to run. Imagine that. I can’t skate or cross-country ski because I fall over and I get so god-awful tired. Sadly these are all things I used to do relatively well. So I modify. I got an elliptical, and I do that. But it’s tough to get motivated every second of every day. But you have to, you don’t have a choice. I don’t want to end up in a chair so I have to try and keep my legs strong even though they mostly feel like rubber. Frankly, I am pissed off. I will not accept that someday I will need a walker or a scooter. I will not and cannot accept that. I am not in denial. I am not in denial. I am pissed off.
I put a team together for the MS Walk, but it wasn’t very organized. Just a couple friends, (Mark and Miranda) and my husband. They walked with the two older kids in tow, and I watched Miranda’s baby Emma. The MS Walk itself was organized. There were a lot of dedicated people there volunteering and setting up long tables of snacks. They were happy to be there. So I sat and watched the hubbub. There were three older kids getting ready for the walk and pinning signs to their backs. These little white MS Walk signs said “I’m walking for my Mama.” Mama. That’s what my little girl calls me, Mama. My heart sank. My chest felt painful and heavy. My face started to ache with tears and I tried to hide. Pretended I was invisible. Didn’t let anyone see. It was a brief meltdown and I don’t think anyone did see. I didn’t want them to see because I didn’t want to be like them. Ok? I didn’t want to be like them. Why am I so sad?
I take a lot of vitamins. That’s because I have gone the naturopathic route. The doctors say there is no medication for my type of progressive MS. I take Orti B, Vitamin D, Cal Mag, Folic acid, Vitimin C and E, Omega 3, Evening Primrose oil, CoQ10and MSM. I hate choking down vitamins but at my last neurology appointment the doctor said I hadn’t progressed in two years. Did the vitamins work? I don’t know. No one knows. I cannot believe I have this. Truly, this is ridiculous. I still do not eat red meat. I eat mostly chicken and fish, and lots of veggies and flax and olive oil. But as my sister Mary says, I am a “non-eater,” which really means I am picky and kind of neurotic. So when you are a non-eater it is difficult to eat enough food. Sometimes I just get bored eating and that’s never good, I have to force myself. This is becoming quite the psychological study, maybe I’ll find the root cause of MS. We can only hope. I think MS is a culmination of a lot of issues and factors. And I think a big one is susceptibility and sensitivity. Otherwise, why would an entire family grow up under the same conditions and only one get MS? I have four brothers and two sisters, and a mom and dad who are very active and healthy in their seventies. Go figure.
I really love my mom and all the broads she hangs with – Velma, Arlene, Jean and all the rest. But they are a lot older than me, a lot. And they seem to be in better shape than me. That makes me so sad, and a kind of jealousy comes over me I guess. I mean, they have all lived pretty full lives, they’ve raised children, they have life-long friends, they travel, they garden. They are happy. Velma who was in her eighties, just died. I marveled at her. The last time I saw her she was ‘crafting’ with the other gals. She drew lines straighter than I ever could, she painted wooden Christmas ornaments and talked about life. She never went to the doctor. She was known for trapping squirrels and putting them in her trunk and releasing them into the wild. The squirrels always came back. Once she forgot the squirrels were in her trunk and she drove them across the border. Velma. I didn’t even know her well but I loved the woman she was. She was herself, spoke her mind, seemed to love life and take it as it was. She died in her kitchen and her son found her. Somehow it was ok. It was ok because it was a privilege just to know her, even for a short time. What makes people like that stay in your mind? Why was she such a together type of person? She wasn’t a Hollywood star, she didn’t try to be anything she wasn’t. She just didn’t like squirrels and she had a lot of friends who loved her. I guess that’s all there is. Damn, I wish I could get that into my thick skull.
She puts on a lab coat, grabs a pointer, and pulls down a white board or sets up a projector screen. Images of Mc Adam, the famous station, the tracks & trains.
Let’s pull it apart, down to the bare bones. Let’s go deep into me to see why I have this dis-ease. Was it the well water or the creosote soaked railway town? I grew up in Mc Adam, New Brunswick, a village that was a thriving junction in its heyday. My grandfather worked on the railway most of his long life and lived to be ninety-eight years old. My father worked on the railway for thirty-eight years and is now well into his seventies. A couple of my brothers worked there too. Mc Adam was and still is a dusty little village, surrounded by extraordinary lakes and miles of rocks and evergreens. There were obvious landmarks known to all the kids; the pissy smelling tunnel that went under the tracks, the slippery tracks themselves, the train station that looks like a castle and has now been declared a historical landmark. But the dust, soaked with the oily smell of creosote – that’s the most memorable. Was my childhood poisoned? What did we do there? I would say we didn’t roll in the dust, but that’s not true. We’d do anything to change the scenery, shake it up, because we all thought it was so god-awful boring. But we did have fun getting in trouble. The best memory is a winter activity we fondly referred to as roof-a-sliding. We’d wait until the winter snow was piled so high we could easily walk onto a neighbours roof and slide into the bank. We loved it and we’d do this in the dark of night (which is 6 o’clock in the winter). We only got caught by the cops once, and that was because we inadvertently were peeking in windows on the way to the illegal slide. These memories make me very happy. Roof-a-sliding did not cause my MS. I’ll rule that one out.
She moves to a chair or a stool
You gotta hear this one. You won’t believe it anyway. My husband doesn’t. He can’t fathom it I guess. I lost my legs making shepherd’s pie, shepherd’s pie. Like I ran a marathon or something. So you know what? That is what I liken simple tasks to now – Herculean feats. I am an Olympian, a real athlete. It took me over three hours to make a pie. The pie consists of ground beef, mashed potatoes, and a can of creamed corn (if you really want to piss the man off). It took me three friggin’ hours because I had to peel myself up off the floor three times. I didn’t fall or trip or anything, my legs just gave out. I sank – somewhat gracefully – to the kitchen tile while gripping a chair or my kids head or whatever was there. The last time I sank my girl was staring at me in her diaper oblivious to my affliction. “What’s happening Mama?” she says. Then this weird thing happens. As I’m sinking and trying to hang on, I feel giddy. This overwhelming need to laugh happens. It’s so absurd to be losing control and laughing about it. But that’s what happens. When I first had the symptoms of MS this would happen after a walk around the block. I would feel weak and have to drag myself up the steps at the end of my walk. It happened then too – this giddy need to laugh thing. Maybe I’m losing oxygen or something. Or maybe it’s a gift from God. God is saying, “Don’t take yourself so seriously my child. They are only legs. Legs are highly over-rated these days.” Yeah right God. I’ll get back to you on that one.
My left foot. I keep tripping over my left foot. This is not an inspiring film about a man who loses all ability in his body save for the exceptional artistic talent of his left foot. I remember I felt moved by that film years ago. Little did I know that I would have my own “left foot” story. Where can I find my inspiration? It must be somewhere. How do I find my way out of this prison? My body will not take me where I want to go. I am confined. Yet, I am not so confined that I cannot see or breathe or feel. And there’s the problem, the torture, the sadness. I can see, hear, and feel myself as a different person. I don't have the energy I once had. This can't be me. This is ridiculous I say, over and over. I am so angry! I am only 44, not 64. And even then, 64 is young these days if you look after yourself. My mom is 72 and her life is full and active and she's happy. Is it all just attitude? Will I be gloriously happy if I just change my attitude?
A wall of self-help books, projected.
“You’ve got a bad attitude.” I hear the distant voice of an elementary school teacher. And he’s right. I had a bad attitude. So through the years I turned to self-help books – better than turning to drugs or alcohol I guess. I have a shelf of self-help books, ok two. And I’ve been collecting them for years. This whole MS thing didn't just propel me into the realm of Marianne Williamson, and Dr. Wayne Dyer. I have always been soul-searching but nothing ever seems to stick. Now I worry that the MS has been caused by me. Me, being all messed-up and spiritually out of whack for so many years. We can think ourselves well, can't we? And there is the 'power of positive thinking,' right? I know all the one liners and catch phrases and I try to convince myself that I actually believe them. I have mantras that I repeat every day when I stretch and meditate. And yes, it does work, but it is an ongoing daily struggle. And of course I journal. I write it all down.
I called a lady that does Reiki, and she’s a practitioner in something called Body Talk. This is all about natural healing, acupressure, and energy psychology. Sounds simple huh? Throw a little Echart Tolle in there and you’ll be cured in no time. Years ago, this lady would have been known as a snake oil salesman or a wizard or something. Today she’s a natural healer, one who’s in tune with the spiritual realm. And I’m buying it. Hook, line and sinker. I’ve tried everything else, and I’m up for meeting her. I like her energy and she likes my voice. My ego is a sucker. She’s not selling oil or dreams, and she is not a charlatan. The Western world just hasn’t caught up yet – well not everyone. She, and others like her that I know have delved into ancient Chinese medicine. I know an Osteopath, two or three girls who practice EFT (Emotional Freedom Technique), my friend Jan who’s a yoga teacher, and Dr. Pete my chiropractor. Phew! Why are my legs still tired? I know there’s something wrong with me but I’m not convinced it’s MS. I have symptoms that are like MS, but guess what? The same symptoms can be attributed to mercury poisoning and who knows what. The doctors don’t really know. And the fancy neurology doctors really don’t care. Apparently they don’t have the capacity for caring. Imagine getting all those brains and losing so much feeling in your heart. I guess you can’t have it all.
Blackout, then bright light…Dr Neuro enters. He is in typical doc garb (white coat and stethoscope). He speaks.
DR NEURO I’ll see you now Miss…Miss… it doesn’t matter.
WOMAN Hello! Extends her hand which he ignores.
He performs a series of seemingly ridiculous tests. The tests are much like the procedures for testing a drunk driver. Touch your finger to mine. Follow my finger with your eyes. Walk a straight line (toe to heel). The doctor then does a pirouette, the girl lies down and he tickles her belly and her feet. He jumps up like a dancer and strikes a pose.
DR NEURO I have reviewed your MRI and it looks like all signs are leading in the direction of… I think that… perhaps we should consider… I suggest that you consult with a neurologist at the MS Clinic in Toronto. We will set a date to meet again exactly one year from now.
WOMAN But… but… what should I do? Is there medicine for me? Should I be on a special diet? How did this happen? Doctor why are you walking so fast? I can’t keep up with you. I need answers. What about Yoga? Should I do yoga?
DR NEURO You cannot exercise MS away. He leaves quickly with a florish.
I am going to find a way out of this. This is not me. This body is a shell and it is not me. But I have to drag this misery around so I had better figure out a solution. I sit you know. I sit a lot and look out the window. We have trees now, lots of them, because we moved last October and our house backs green space. So I sit and look out there, peering into the trees, looking for wildlife. So far I have seen a coyote dancing, playing with voles before he bites their heads off. I have seen a nut brown hare, and I startled a wild turkey behind the fence. But there is one thing that bothers me to no end. There is a clear plastic bag behind the fence that probably blew there by mistake on garbage day. This bag is stuck in some rowel beside a sturdy tree. And this bag seems to stare back at me and it is always there. This bag mars my wilderness, my trees, my beautiful green-space. So here is my dilemma. God knows I want desperately to retrieve that bag and throw it to recycling. But, it is behind a very long fence. I would have to find the end of the fence, go around it and travel along the fence until I found the bag. So this sounds like I am talking about some grand trek through the Rockies or something. It sounds like I am talking about a lengthy excursion. This is my back yard. It would take a normal person maybe five minutes. Anyway, so that’s that. I can’t go get the stray friggin’ bag because I don’t know if my legs will give out half way there or when I try to come back. And I don’t know if my bladder will give out either, so that is a consideration. Although I always wear a pad and they’re pretty reliable – the Always pad. Peeing my pants doesn’t really bother me anymore. I’ve got used to it. You have to embrace the pee – wear a thick pad, and keep on smiling. She strikes a classic yoga pose and chants ohm…
Do you suppose this is it? Is this my new normal? I walked to the pond with my daughter, our ‘nature walk.’ We were looking for turtles and rabbits. And so now we’re back and I’m at the computer and I’ve said to my girl, “I’m just going to have a coffee and try to get my legs back,” like I’ve lost my legs. Like I forgot where I put them this morning. Don’t they attach to my hips? I am 44 years old. I should be sprinting to the pond. But I’m sitting waiting for my legs to come back. Is this some kind of joke? Is this some kind of divine intervention? Is this God saying slow down? Stop and smell the lilacs and the freshly mown grass? No, I already did that. And it’s not God intervening. God doesn’t care about my scrawny white legs. They’re only part of my scrawny white body. And the body is not what we are. I am not my body. God cares about my spirit and my goodness, or my lack of goodness. God?
I am so miserable so much of the time. I have to be honest. I’m trying to find myself. Like I’m having some sort of mid-life MS crisis. But this is not the only crisis. I have to deal with my misery, and the fate of the planet. My friend Jamie the plumber came by. He’s a young environmentalist. He said we’re running out of water, and what we have left is laced with birth control pills, antibiotics, and god knows what. Is that why I have MS? Have I been poisoned by my own water? I think so. That is my latest hypothesis. I am petite and I eat like a bird. I almost never eat full adult sized meals – maybe once a day. I eat veggies and fruit, but it’s all been sprayed. And Jamie says it’s been sprayed with a fertilizer that is a delightful cocktail of human waste, and over the counter meds. And the best part? The farmers don’t know. Yeah right. Farmers are not stupid. But some farmers are willing to look the other way if they can make a few bucks. C’mon, farmers always need money. This can’t be more depressing. Imagine falling apart and you can’t do anything about it. I mean, you have to eat and drink and breathe the air. Is there somewhere on the planet that is perfect? I think about that quite often.
Beautiful scene, water, lush environment, oasis, flowers, purity…
They talked about the “blue zones” on Oprah. Those are the places where people live to be very old and so they researched what they were eating and drinking. Mostly I think they were just living happy lives and they didn’t have cancer causing cell phones. They would not live as long if they were trying to learn how to text, surf the web, and download their favorite show tunes, while planting an organic garden. You can't live like that.
Animal sounds, an elephant and exotic birds…
We went to the zoo the other day, and I thought it would be ok. And mostly it was. We went with friends and I pushed the stroller. I made it half way round the zoo and I was done. I needed a rest. The stroller was like a walker. That name practically makes me gag. A “walker.” And I guess that’s what I need. Anger swells. I am tired of being angry and it’s just not working for me. I am about to give in. But my hair isn’t grey. I don’t wear frumpy flowery clothes and my shoes aren’t ugly black practical things. I am not in my 80’s. Why do I need a walker?! I went online looking at walkers and other options after my husband asked me how we were going to get around Disneyland if we were to take our girl there. I so resented that. I just want to ignore that I need help. But I looked at walkers and found one online. It had a seat on it and a large shopping bag. Kinda cool. It’s not the fact that I need a walker and that it will make my life a lot easier. It’s the embarrassment. It’s the pride. It’s the “what are people thinking?” and “I look so weak and incapable.” I’m acting like a fool who would rather die tripping over their feet than admit they need help.
She picks up a journal and pen.
I keep a journal, but I haven’t been writing for a few months. So I’ll get back to it. I did have a kind of episode in September. I ended up in the hospital for a few days. But really, it wasn’t all that bad. My back went out – I couldn’t walk for two days. My sister Jane made me go to the hospital. When they saw my back was bad and I had MS, they moved me to the front of the line at Emerg. Hey, membership has its privileges. I went on steroids and voila I could walk. Usually I’m against drugs but sometimes they know what they’re doing. After having the steroids at the hospital, I was walking pretty good and I felt a lot better. But you can't take them all the time because there are side affects and they can wreak havoc on other organs. So steroids are only a sometimes friend, not a cure. A little while after this, I decided I would check out the Friday exercise class organized by the MS Society. I kept putting it off, but a regular of the class – Marilyn, got wind that I had been an aerobics instructor in another life and encouraged me to lead the class. Well I found some funky music, grabbed my sneakers and off I went. The class was a blast. I was the only one standing but there was a special energy there. It's a well known fact that MS affects everyone differently and yet we all have similar stories that we can relate to. The important thing was that everyone showed up, no matter what their state, and that said something. They showed up. I think I was enlightened that day – spiritually enlightened. We breathed in deeply raising our arms in unison, and then I watched as we all breathed out moving our arms down at the same time. It was poetry. A thing of beauty. There we were. Together. Moving to the music and experiencing a rhythm of life. I felt good that day. I felt good enough to carry on, no matter what. Imagine. In a moment I felt acceptance. Acceptance of my self and of others. And then in one fell swoop it was all about to change again. We were all about to welcome the possibility of a new reality.
Lights-music? Major transition – now the play is post W5 episode that profiled The Liberation Treatment, and Dr Zamboni in Italy.
Late last night when my girl was sleeping and my husband was at a meeting, I dropped my housecoat and in my pj’s and socks I started to run…sort of. I picked the longest part of the rug and I kind of sprinted to the end. It was not at all graceful and I was on the rug for obvious reasons, it wouldn’t hurt as much if I fell. But I ran, better than I have in a long while. And I think I know why. I’ll tell you. A few weeks ago there was a news report on the CTV program W5. The report profiled a medical story about MS called the Liberation Treatment. They exclaimed that this was the possible breakthrough needed for MS. We all watched, all us MS’ers with mouths agape, some with tears, some with no tears left. What? A cure? A simple angioplasty to clear the veins? Dr Zamboni in Italy says MS may not be auto immune, it may be vascular, and all we need is to put a bubble in our veins. OK Let’s do this. Dr Neuro appears.
DR NEURO Not so fast. I think W5 has done a great disservice to people with MS everywhere, giving them hope. He leaves quickly.
But you see, hope is sometimes all people need, when there is nothing left. Sometimes it gives you a boost of energy. The excitement can spur you to greater things. You start talking to God again, that’s hope. You start running down hallways when you can hardly run. You feel something swell in your belly, your eyes are always searching the horizon, that’s hope.
So for the past few weeks we’ve all been going crazy. Calling our doctors, setting up appointments for Doppler ultrasounds and specialized M.R.I.’s. Our family docs are mostly onside but the neurologists have shut it down. They want extensive research done, ‘who does this Zamboni guy think he is?’ They have been doing the Liberation treatment in Italy, Poland, and California, but now they are all shutting it down. The response has been so overwhelming that California has sent a form letter saying they are looking into the risk factors and so on but – they’ve already been doing the procedure! Now you want to research? Now, when we are all at your door offering you money, willing to mortgage our houses for a possible cure! Ok, calm down. Let’s all have a cup of tea and calm down. Breathe.
She get’s down on the floor to stretch and breathe. She grabs an inspirational book and reads an appropriate quote to meditate with.
“Anything that’s not of Spirit, such as fear, illness, worry, shame, anger, and the like, isn’t worthy of your attention.” So I find a quote everyday that speaks to me and I repeat it over and over until I feel its meaning. And I stretch and breathe and meditate on these words. My Osteopath Cathy says this is yoga. I thought yoga was learning to limber your body, but it’s really limbering your mind and soul. Stretching and breathing makes me feel better, and I suppose that’s all there is. She sits up cross-legged. Now we wait. But how long are we willing to wait? I imagine myself getting the appropriate tests done in my country and then waiting some more. And then I imagine getting on a big plane preparing for the adventure of my life. California dreaming baby – wine country to convalesce. Now I imagine having a relatively simple procedure done on my veins. The doctors are handsome and tanned, the nurses look like they work on General Hospital and are equally beautiful and forever checking out the doctors - sideways glances, pink pouty lip gloss, perfect breasts. And yet, these highly perfected Stedfordian nurses are professional and very good at what they do. They are even somewhat caring. The only problem is that you feel like you have to spend the day before at a salon quaffing and primping and getting your mani-pedi done before feeling good enough to be in the same room with them.
I imagine that this procedure is the cure. I imagine that in September I will be walking my girl to school. I imagine even skipping my girl to school. Then I imagine in a few years embarrassing my little girl who has turned into a little lady, by dancing in the school yard. Dancing with wild abandon. Dancing like there is no tomorrow. Dancing without music. Dancing all the way home and collapsing breathless on my lawn. Then, feeling tethered by gravity to the great earth under God’s sun, I stretch and breathe in grass and tree smells. I have surrendered. I am home and completely ready to continue life’s journey. Now begins, a new chapter.
Black. Scene change. Dr Neuro is wheeled in centre stage. He is strapped to the chair and his mouth is duct taped.
Now, you will listen. Now you will be strapped to the chair, unable to move. Unable to speak. If I could have rigged up a catheter to your bladder, I would have. If I could make you feel extreme fatigue or brain fog, I would. If I could make you long for better times, times when you skated on a lake, skied through snowy woods, played hockey with the neighbourhood kids, I would.
I was nice to you. I deferred to you. I was told that neurologists were the ‘smartest’ doctors – in the top one percent of their class. Then why did you lie? Why did you deny all of this? Why didn’t you listen? Why were you so busy you didn’t let us speak? Really? You’re only in it for the pay check? Check your vows Heir doctor. “First, do no harm.”
Guess what? We are not stupid, only led astray by medical professionals who want to keep us in the dark. But low and behold we have the internet, the magical internet! And we’ve been reading and educating ourselves. And more than that, we have heightened awareness; we have more senses than you. Why? Because we are fighting our way out of hell. You can stay there if you like, but we want our lives back.
Ok, that was a bit harsh. I was in a foul mood I guess. I’m sorry Doctor Neuro, I know you’re only doing your job. You can’t get excited every time there is an inkling of a cure for MS. You must follow rules and reg’s and be very cautious. You really don’t want to hurt people, you just want to make sure everything is above board. Right? You won’t jump into anything unless you are absolutely sure. This is Canada for god’s sake not Brazil or Costa Rica. Heck, they’d cut off a perfectly good appendage for the right price.
Speaking of education and the internet I found a very interesting timeline as reported online. It talks about the venous connection to MS, and how doctors have known about this for a very long time. Here is a glimpse of what I read:
1863, Dr. E. Rindfleisch noticed that, consistently in all the autopsy specimens of MS brains he viewed with his microscope, a vein engorged with blood was present at the centre of each lesion.
1937, Dr. T. J. Putnam researched lesions and noted that thrombosis of small veins could be the underlying mechanism of plaque formation.
I don’t know what that means really.
1942 Dr. Robert Dow and Dr. George Berglund continue on with Dr. Putnam's research and continue finding venous connections to MS lesions.
1950 Dr Zimmerman and Netsky carry on with Dow and Berglund's research, and note that the lesions are indeed venous in nature, but not caused by small thrombosis as Putnam surmised.
1960s Dr. Torben Fog, a Danish professor – noted that MS lesions are predominantly around the small veins.
F.A. Schelling's 1981 discovery at the Hospital for Nervous Diseases in Salzburg. He found a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis. When Dr. Shelling went public with his research, he was dismissed, ridiculed and mocked. How nice.
Even I can understand that timeline. Was it a matter of money? Clinical trials aren’t cheap, we all know that. Well thank goodness Dr. Zamboni had an excellent reason to take up the charge. He fought for love of his wife and her health. If this is the real deal, if MS is venous and it can be helped with a simple angioplasty, we owe that man everything. He will go down in history as saving the lives and dreams of thousands.
Now let’s get on with it. Be patient but persistent. Fight for your right to be healthy. Research and study reports. Go online to the “This Is MS” forum. Connect with like minded individuals who are hopeful and positive about the future. And most of all, don’t sit down. And I mean this figuratively and literally. If you sit down you just may stay there. Exercise your brain and your body as much as you can. Prepare for your future as a healthy and vibrant person without MS. Believe it. And if you can’t believe it for yourself please believe it for the 20 year olds who really need hope for their future. They are babies in an uncertain world. They shouldn’t have to worry about their legs when life is hard enough.
But, there is more. I recently saw Dr. Sandy McDonald, resident Vascular & Thoracic Surgeon at Barrie Vascular Imaging. Dr. McDonald says I have a vascular anomaly in my left jugular vein. What does this mean? What do I do? Nothing. I wait. I wait until the doctors get up to speed, and maybe then they will do something. I have to trust the doctors. My family doc only said “no bungee jumping.” I can live with that.
May 10th, 2010. And now the journal begins. I am waiting, just waiting. And mostly going crazy. Dr. McDonald and Angela the ultrasound tech have been to Italy and back. They are super heroes, real live heroes. And I am in their books. I am on their roster. So I check their website, and I wait.
I’m looking inside myself and seeing mixed results. Where am I? Who am I? I talked to my best friend Charlotte the other day on the phone. We are miles away in distance, but so close in our hearts. She is a sister to me and I admire her so much. She is brilliant and tenacious in her loyalties. She is the strongest most accomplished and irreverent mother I know. She has four children. And you think that would be enough to absorb. But three of those children were deemed autistic at one point. Hum you say, the doctors must have misdiagnosed. No. My friend Charlotte recovered those children through ABA therapy. She did it. And she was fierce and tireless. I still don’t think she sleeps. Now she helps other parents with their children. She was born to make a difference. Her children were sent as a gift from God that quite possibly will change the face of autism. I admire her so much. However, it needs to be said and acknowledged that she may not of been able to accomplish everything without the help of her amazing husband who brought home the bacon so that she could work miracles. Anyway, why I write about her is so that I can become inspired as I wait for my journey to unfold on the way to a surgery that will give me back my legs and my freedom.
Every Monday I take coffee and tea to the girls at Dr. McDonald’s office. They love it and they don’t kick me out. They are lovely girls, open and honest. Falyn, with the name like a soaring bird, is young and beautiful. She is kind and says “you don’t have to do this.” But I tell her I want to, and in my thoughts I’m saying, “you are my lifeline, my strength to go on.” Sara sits in the middle. She is a raw spirit. Today her face was troubled because her boy has gone to live with her ex husband. But she knows it’s the best thing. As I look at her behind the partition I can tell her heart is breaking. She won’t tuck her boy in tonight and kiss his sweet lips. Amanda is lovely as a catalogue model and sits at the end, closest to the door. She likes steeped tea with milk and came to this country 20 years ago to look after Dr. McDonald’s children. She is tethered to her position by strong memories and unwavering loyalty. Angela is the manager and doesn’t sit down. I wonder if she really knows that she is on the cutting edge – that she is making history. She has a particular way about her – professional and no-nonsense. But there is something else. It’s like she’s been through things. Tough things that she’s kind of buried. But she’s good you know, and ethical. And you can tell she wants to do the right thing and take no credit. I love these people and I don’t even know them. I love them because they are in a zone. An incredible focused zone identified in the jobs they do. I guess I kind of envy their path. I wish I was on their team – and that’s why I volunteer to bring the coffee and snacks.
Dr. Sandy McDonald. They say he is a genius. They say he is a meticulous surgeon – the best. He is in my back yard and I cannot believe my good fortune. I am his patient and I am waiting every day to be called by him again to discuss the possibility of an angioplasty to open my veins. I’ve talked to God a few times about this MS thing. Is this the miracle I’ve secretly been dreaming of? Has Dr. McDonald been appointed by God? Some days I’m so mean about my condition. I can’t walk well and that makes me so mad. I get tired and sore and fed up. I trip and sometimes fall. I try to see the good side and appreciate that “it’s not so bad, it couldn’t be worse.” But I have to be honest. I am so sick and tired of “MS” – whatever that is. I wish Dr. McDonald would call. I’m like that girl in High School waiting for the popular boy to notice her. And no one is more popular than Dr. McDonald right now. He is the Hollywood heart-throb, the High School quarterback, and the brilliant guy with the beautiful mind all wrapped up in one. Call damn-it, call!
I signed up for Poland and I am waiting to hear. There is also hope in Albany, New York and I am waiting to hear from a doctor there. But last night I went on line and I found out something very devastating. Some people who have been liberated aren’t feeling the best, and they don’t know if their veins are closing up again or if that is part of the healing process. And it occurs to me that that is what the medical community is talking about when they say they need more research - they don’t know what to expect after the procedure. And in a dark moment I think, can I handle this forever? What if I am never cured? What if I get worse? I need to find myself pronto, even before the procedure. I have to be ok one way or another.
June 28, 2010. I’m OK. But, still waiting. This Friday there is a meeting in Mississauga at the Best Western airport hotel. We are meeting with a lawyer and this was set up by a fellow MSer named Tim Donovan. People with MS across Canada are meeting to ascertain our rights in the fight to be treated for CCSVI. Right now they will not do this in Canada so we are forced to go to the States or overseas. I am going to post this entire play/journal now and continue to write. This will be one big blog. I hope to publish it one day soon.