Professor Tanis MacDonald has been working as Dramaturge for me, as I write my play. She sent me notes, and I thought they were fantastic and very helpful. My play is starting to take shape with her experience and insight. Here is the second draft of Act One of "Hope Speaking." Tanis thought of the name because that truly happened to me when I called Albany, New York to book my procedure - the lady on the other line answered "Hope speaking, how can I help you?" I would also like to acknowlege the generous support of the Ontario Arts Council and for reccommending me to them, Eric Coates,the Artistic Director of the Blyth Festival.
A Journal Play about Living Life in Moments
By Sheri Astorino
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.
WOMAN 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. 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. I am angry at my wobbly legs, they have abandoned me. I don’t know what they are thinking when they spasm. I force them to stretch, they want me to cry. They are like a spoiled little child laughing at me. When I was a child, my legs were thin and I never wanted to wear shorts or skirts. I remember one day I was lying face down on my bed looking back at my bare legs and my mom said, “look at that, your legs are getting bigger.” And they really were getting bigger, I was growing after all. I was so happy. And now I am so angry at these tired legs.
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. You know, those moms who pretend they were virgins before they married or those moms who pretend that it’s A-OK that they are confined to a life of servitude and their lives and careers don’t matter. Liars. So I tell my girl. 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 and I emptied the dishwasher.
Now I sound pathetic, like I want people to feel sorry for me. Please don’t. This didn’t occur because I’m a lapsed Catholic or because of some kind of Karmic interference, although I know people who would think that. Serious Catholics think Redemptive Suffering is a good thing. Give it to God and all that. Your suffering is your cross and somehow that helps the world. Well that’s one way to cope and still the voices in your head. If I somehow can chant and pray and meditate all day my pain and suffering will dissolve and fly straight up to Heaven. Who am I Kidding? You have to be Deepak Chopra for that, or at least a distant cousin of his. You cannot be a mere mortal and expect to levitate after one yoga class. Maybe it 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? I’m lining up for the blue plate special and putting my teeth in a glass at night. Maybe I’ll take my scooter to the legion and play cards with Marge and the girls. It’s not like I broke my leg and it’ll heal. There is no cure and they don’t know the cause. How did this happen to me?
When I found out I had MS over two years ago I started feverishly studying the cause and potential cures. Of course my family Doc was quick to point out the charlatans trying to offer false hope to the desperate. “Well if someone tells you to hang upside down from a coconut tree and drink your own urine because that will cure your MS, you really should get a second opinion.” Or he says “if a Tibetan Monk tells you to eat yak scat three times a day while simultaneously smoking a doobie bigger than your fist, will you?” He goes on to point out these new so-called “breakthroughs” need to be researched and put through clinical trials that take years and cost millions of dollars. So I continue to research other things, like bee pollen. Bee pollen is something some people subscribe to for MS. Or is it bee stings? I dunno. I picture myself in a large white mesh hood, arms bare and outstretched to the sides, beckoning the bees to come hither, willing them to sting me. And I like some kind of hero or martyr just stand there, wincing ever so slightly, light sweat on my brow. Desperation. I just want to walk again. I remember walking in Toronto, everywhere. I didn’t need the bus if it was a nice day.
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 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).
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. These are all things I used to do relatively well. So I modify. I got an elliptical, and I do that. It’s tough to get motivated every second of every day but I 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 very 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. Okay? I didn’t want to be like them. I’m not a person in a wheelchair. I’m young and fit. I’m strong and vibrant. I’m someone who’s confident and … proud. Well we all know where pride goes. Am I heading towards that great fall? Are people laughing? I see myself spinning in a great black abyss, no wings, no harness, no safety net, just dizzying blackness. Why am I so sad?
I take a lot of vitamins: the homeopathic route. The doctors say there is no medication for my type of chronic progressive MS.
“Vitamin Song” sung like a cheesy commercial while pointing out random body parts.
Vit-amins C and E for E-mmunity, B complex for energy, primrose oil for sanity,co-q-10 if you please and MSM for my knees. Omega 3 and Folic’s good, I eat fish like I should. Red meat’s bad it’s not for me, just give me double Vitamin D.
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 don’t 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. Sometimes I forget to eat. But I’m not that silly girl who says, “It's two already and I forgot to eat lunch!” in a silly girl voice while eating melba toast as she exits an Extreme Tanning Salon. I am not a silly girl, I’m just thinking of things other than food.
MS is a culmination of a lot of issues and factors. And I think a big one is susceptibility and sensitivity. Maybe I’m weak genetically or something got messed up in the womb. 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. Correction, Dad has kind of lost his mind – more than a touch of dementia, but he is almost 80.
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, in their 70’s and 80’s. And they seem to be in better shape than me. That makes me so sad, and jealous. 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 just died. The last time I saw her she was ‘crafting’ with the other gals. She drew lines, without a ruler, straighter than I ever could, she painted wooden Christmas ornaments and talked about every day life. She never went to the doctor, had no use for it. She was known for trapping squirrels and putting them in her trunk and then releasing them into the wild. But because she lived “in the wild,” those pesky little squirrels always came back. She kind of got obsessed with them at one point and was hell bent on discovering the squirrel ring-leader and his followers. So she trapped them as usual and went one step further – she spray painted their tails yellow before releasing them. In the end all she really accomplished was rounding up a yard full of mutant squirrels because they all came back. Once she forgot a trap of squirrels in her trunk and she drove them across the border. But who’s going to question an 80 something woman who just went across the river for some milk and a tank of gas? Luckily no yellow tails were hanging out the back. Velma. I didn’t even know her well but I loved the woman she was. She was herself, spoke her mind freely, seemed to love life and take it as it was. She died in her kitchen and her son found her. Somehow that was Okay. Maybe that’s the realness of her. The same in life as in death. No sorrow, just a spirit drifting off to another space. An old woman went to sleep on her kitchen floor and those of us who knew her are certain she woke up refreshed and happy, somewhere else. It was a privilege just to know her, even for a short time. What makes people like that stay in your mind? 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. It’s sheer acceptance of who you are in the world and what you are meant to do. Be yourself.
She puts on a lab coat, grabs a pointer, and pulls down a white board or sets up a projector screen. Images of McAdam, 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 McAdam, New Brunswick, a village that was a thriving junction in its heyday. My grandfather worked on the railway 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.
For such a boring town, we did find things to do. I remember roping my friend Stuart into a rather strange activity. It all started because I was watching Dr. Leo Buscaglia on PBS. Obviously, we didn't have a lot of channels in the village. Anyway this turned out to be my first foray into self-help. Dr. Buscaglia was known as Dr. Love. He hugged people all the time and taught a university course called Love 1A. I was glued to his speeches. Once he said, “if you're bored you are probably boring as hell yourself!” He went on to tell us to shake things up in our lives, walk out the door backwards, eat cereal for supper, anything that would get you out of a funk. So I called Stuart. Stuart was one of those friends who didn't question things, he just went along for the ride. I told him this was what we were going to do. At about 5 in the morning we would leave our respective houses and meet in the middle. Then we would just walk and see what it was like at 5 in the morning. We would breathe it all in and shake up our routine. I remember the summer air was cool with the musty smell of old railway ties. Everything was so still, no birds, no train whistles. I wasn't thinking about my legs because they took me everywhere. I took them for granted. We didn't question that 15 year old kids don't really have routines. We go to school, climb trees, eat whatever food is put in front of us, and sleep for as long as possible. But I still remember that morning and I remember Dr. Love. Ironically, he died of a massive heart attack in '98. Some things you just can't explain. Maybe his heart was so full of love that it just burst. And maybe my legs have walked far enough, maybe there's a limit and I reached mine.
She moves to a chair or a stoolYou gotta hear this one. I lost my legs making shepherd’s pie. Shepherd’s pie! Like I ran a marathon or something. 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. It took me three 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. “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. 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. Now I feel less moved and more motivated. 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 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, okay two shelves. And I’ve been soul-searching for years but nothing ever seems to stick. Now I worry that the MS has been caused by me being all messed-up and spiritually out of whack for so long. But if we can think ourselves ill, we can think ourselves well, can't we? And there is the 'power of positive thinking,' right? I know all the catch-phrases, let go and let God, accept what is, live in the now. 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 if I am disciplined enough to study them every day. But it is an ongoing struggle and life does get in the way. And of course I journal. I write it all down.
I called a lady that does Reiki, and she says 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 Eckhart 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 burned as a witch. 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 like her energy and she likes my “radio” voice. My ego is a sucker for anyone who thinks I have a cool voice. She’s not selling oil or dreams, and she is not a charlatan. The Western world just hasn’t caught up with spiritual enlightenment yet – well not everyone. She, and others like her that I know are delving into ancient Chinese medicine. I go to an osteopath slash physiotherapist, I know two or three girls who practice EFT (Emotional Freedom Technique), I have about five yoga dvd's, two chiropractors, and I see an old Chinese guy in the mall who does acupuncture. 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. The doctors don’t really know. And the neurologists don’t care. Imagine getting all those brains and losing so much feeling in your heart.
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 Whoever.
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 A year? 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 flourish.
WOMAN 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 onto 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 mice before he bites their heads off. I have seen rabbits big and small, 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 old brush beside a sturdy tree. And this bag stares back at me. It mars my wilderness, my trees, my beautiful green-space. God knows I want desperately to retrieve that bag and throw it into the recycling bin. 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. This sounds like I am talking about some grand trek through the Rockies, 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 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. Peeing my pants on the road to spiritual enlightenment. 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 instead I'm 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 mowed grass? Hey, I already did that. This is 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 I am. I am not my body. God cares about my spirit and my goodness, or my lack of goodness. God?
I’m having some sort of mid-life MS crisis. Me and the planet. My friend Jamie came by. He’s a plumber and an 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 our drinking water? 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, good right? But it’s all been sprayed, Jamie says, with a fertilizer that is a delightful cocktail of human waste, and over-the-counter meds. He says if we flush old pills down the toilet that a lot will stay in the water system and water is fed to the cows and sprayed on the fields so we can't escape being exposed to unwanted drugs and even hormones. 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 couldn't be more depressing. Imagine falling apart and not being able 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?
Beautiful scene, water, lush environment, oasis, flowers, purity… They talked about “blue zones” on Oprah, where people live to be very old. They researched what these long-lived people were eating and drinking. Mostly I think they were just living happy lives and they didn’t have cancer causing cell phones. There's no way they would live so long if they were trying to learn how to text, surf the web, and download their favorite show tunes, all while planting an organic garden. You can't live like that. You have to live in the real world. But where's 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. I leaned on the stroller like it was a walker. That name practically makes me gag. A “walker.” And I guess that’s what I need. 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?! But after my husband asked me how we were going to get around Dineyland if we took our girl there, I went online looking at walkers and other options. I just want to ignore that I need help. But I found a walker online. It had a seat on it and a large shopping bag. Kinda cool. It’s not the fact that I need a walker in fact it would make my life a lot easier because I could do more. But it’s the embarrassment. It’s my pride. It’s the time it takes to wonder “what are people thinking?” and “I look so weak and incapable.” I’m acting like a fool who would rather die tripping over her feet than admit that she needs help.
I had an 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 they were like magic - voila I could walk! Usually I’m against drugs but sometimes they’re brilliant – maybe I can score a few downtown. 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 effects 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.
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. Picture all of us watching, across the country, 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? A Dr Zamboni in Italy says MS may not be auto immune, it may be vascular, and all we need is to put a balloon in our veins. A little balloon that is shaped like a Vienna sausage. Okay, let’s do this.
Dr Neuro appears.
DR NEURO Not so fast. W5 has done a great disservice to people with MS everywhere.
WOMAN Disservice? How?
DR NEURO Hope is a great disservice.
He leaves quickly.
But hope is sometimes all people need. 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: that’s hope. 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. We’re an army of MS’ers 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 before going forward with the treatment, ‘who does this Zamboni guy think he is?’ They have been doing the Liberation treatment in Italy, Poland, and California, but now many clinics 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 can’t promise the treatment even when they’ve already been doing the procedure for 6 months! 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! You want to do more bloody research! Okay, 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. “Anything that’s not of Spirit, such as fear, illness, worry, shame, anger, and the like, isn’t worthy of your attention.” 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 – with sideways glances, pink pouty lip gloss, perfect breasts. And yet, these perfect Stedfordian nurses are professional and very good at what they do. They are even caring. The only problem is that you feel like you have to spend the day before at a salon coiffing 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 with 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. But first, some unfinished business.
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 unable to move, unable to speak. If I could rig up a catheter to your bladder, I would. 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? You must have known about the venous connection from previous research, you’re supposed to be brilliant! Why didn’t you listen to me, to all of us?
Appearance of Chorus behind Woman, whispering menacingly. Why were you so busy you didn’t let us speak? Are you only in it for the pay check? Check your Hippocratic Oath Herr Doktor. “First, do no harm.”
We are not stupid, only led astray by medical professionals who want to keep us in the dark. But lo 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.
The chorus assumes control of Dr. Neuro’s chair and begins to wheel him off stage. The Woman shouts after him as he vanishes.
Why? Because we are fighting our way out of hell. You can stay there if you like, but we want our lives back.
Okay, that was a bit harsh. I’m sorry Doctor Neuro, I know you’re only doing your job. I know that 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 can’t jump into anything unless you are absolutely sure.
She puts on the white coat from earlier in the act, as she speaks the following lines:
This is the Canadian health care system after all. But Doctor I should tell you I
found a very interesting timeline on the Internet. It talks about the venous connection to MS, and how doctors have known about this potential for a very long time. Here is a summary of what I read:
She moves to a flipchart, or clicks on a document reader showing the dates and important names as she lectures:
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 in total, but I draw your attention to the word VEINS.
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 Dow and Berglund's research, and they 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 found around the small veins.
And the big one -
1981: F.A. Schelling at the Hospital for Nervous Diseases in Salzburg, Austria 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 by the medical establishment.
She turns to the audience.
Is there a doctor in the house?
Hands do, or don’t, go up in the audience.
See, none of us are doctors, but we can understand the discoveries laid out by this timeline. What we can’t understand is the time. 1981? Thirty years ago? Was it a matter of money? Clinical trials aren’t cheap, we all know that. But did three decades really need to go by?
Dr. Zamboni had an excellent reason to take up the charge and pay attention to the forgotten research. He fought for love of his wife: she had MS. 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.
I just 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?
Be patient but persistent. Fight for your right to be healthy. Research and study reports. Go online to the “This Is MS” forum - www.thisisms.com and join Angioplasty For All to fight for your right to be heard and healed. Write it down. Connect with like-minded individuals who are hopeful and positive about the future. And most of all, don’t sit down. 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.
End of Act One