Act Two:
The woman is in a different position than she was at the end of Act One, but she addresses the audience in the same tone as she repeats the final line of the previous act: Believe it.
I am waiting, just waiting. And mostly going crazy. Dr. McDonald and Angela the ultrasound tech have been to Italy and back to train with Dr. Zamboni. They went directly to the source of a new discovery called CCSVI – Chronic Cerebrospinal Vascular Insufficiency. This means jugular and/or azygous veins are narrowed. Zamboni discovered a way to balloon those veins by way of a simple angioplasty and Dr. McDonald became curious. 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. 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. But three of those children were diagnosed as autistic at one point and Charlotte recovered those children through a specialized autism therapy Hum you say, the doctors must have misdiagnosed. No Charlotte saved her children by being 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. I admire her so much. However, it needs to be said and acknowledged that she may not have been able to accomplish everything without the help of her amazing husband who brought home the bacon so that she could work miracles.
The Chorus of 4 Women appear, strong and elegant. They are wearing long simple dresses. They weave in and out of each other’s space throughout the next speech.There are amazing women in my backyard as well…
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.
The Chorus exits.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 have been sitting by the phone a lot. I signed up for the procedure in Poland and I am waiting to hear. There is also hope of having the procedure done 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. I want to lead a normal life.
I've been working at the College and I have been so god-awful tired. Don't get me wrong, I love the work and I want to continue working there but the fatigue is a tough one. I only teach there two mornings a week but after work on Wednesday I can barely breathe. I drag my body through the campus trying to remember what it was like when I was strong. I try to conjure images of me capable and fearless. Was I ever like that? I thought I was. I have been kicked on my butt by this and still it will not take me. It will not win. Last week I had to pick up 100 copies of a 5-page test written by the students. Heavy. It was pouring rain and I had a cane. A nice woman, weathered and kind, suggested I hang the blue bag I was carrying, the one with the college’s logo – around my neck to carry it. Is this funny or pathetic? The students don't even notice. They are busy huddling under the awning and sucking on their smokes. They don't care. So I head to the car, bag over head, leather purse slung over my shoulder and cane in right hand. The weather is fierce. Wind blowing, rain stinging, god-pushing fierce. I figure this is my Everest, my mountain to climb. Epiphany. See, we all have our challenges, everything is relative. I am not an Olympian. But on this day I am a survivor, and I make it to the safety of my dry car.
Countdown to Liberation!
Surrender. I love that word. I said a prayer to St. Joseph today and that was part of my petition. Can you pray for more than one thing in a sitting? I prayed for peace in my heart and for the ability to surrender to the will of God. And I think it's working. Then I looked at a small prayer sitting on my dresser across the room -it sits like a little book etched in glass. It was from Charlotte. Imagine that. I have carted it with me from house to house and it has survived. It is the Serenity Prayer, you know the one. "God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference." The funny thing about this prayer is that my brother Mike says it at his meetings and I say it for strength too. So my day has started off on the right foot. And this all before I have let the dogs out and sang to my girl. I sing her "Morning has Broken" mostly every day. Today is Tuesday and on Sunday we travel to Albany, New York. On Monday November 1st I will have the angioplasty procedure. Monday is All Saints Day and my friend Father Mark says that's a good thing. He says all the Saints will be praying for me. Cool.
We leave for Albany Sunday, it’s Halloween. Well at least I can find an appropriate costume – maybe a drunken bride of Frankenstein, I’ve got the walk down. Just need the dress.
I got a call today from Nancy, a Nurse Practitioner in Albany. She advised me to take some Valium, because "it'll take the edge off." So I think I will. My sister Mary says to do it just for the high. Once she had to take Valium for some serious aches and pains – she has battled arthritis for many years. Anyway, the valium stayed with her until the next day when she found herself giggling in her aerobics class and feeling no pain.
My Mom held a fundraiser for me by contacting my siblings and gently twisting their arms. This is why it is awesome to come from a big family. Well wishes and inspirational thoughts all round. With a big family you don't have to go far for a fundraiser. And it will help immensely. Now that takes the edge off. I know many people like to praise their mothers and there are some who like to blame their mothers too. But my mom really is a special, caring and selfless woman. I know this because I have witnessed it first hand and I have heard many others sing her praises. And here is another proof – truly loving and exceptional human beings don’t even know they are unique, don’t even know the pedestal they stand on and the light surrounding them. She doesn’t falter and has stayed remarkably positive through thick and thin. When I was a young woman in Toronto struggling to find my way as an actor, every phone call ended with “stay strong.” And so, she’s the one I turn to. She listens to every crazy scheme and hair-brain idea I have, and laughs at my stories. She never dismisses me and when I finally told her I had MS, she didn’t cry and neither did I. She told me a story about a guy named Burt Messer. Burt was doing some work down at my mom and dad’s camp. This camp is a rustic summer cottage built by my dad and I went there every summer the moment school let out. Anyway mom and dad needed to put in an oil barrel underground at the camp and Burt Messer was the man for the job. Burt came with a back hoe and went to work digging in to the earth just beside the camp, as my dad looked on. My mom was in the camp puttering, sweeping, keeping busy. Burt started to struggle a little with the back hoe. He hit something underground and it got caught up in the machine, he tried to pull it loose; he kept pulling as the back hoe labored making desperate hissing sounds. Suddenly my mom comes tearing out of the camp – “Stop Burt stop, the oil stove is up against the wall!” My dad runs to her and says “for God sakes Pauline, what in hell are you screamin’ about!” My mom tells them to hurry and come look; sure enough the oil stove has migrated across the kitchen to the far wall. It seems that Burt had got the oil line caught up in the back hoe when he was digging in. After they all surveyed the damage and sorted it out Burt stood back and said, “Well, it’s not so bad it couldn’t be worse Bunny.” Bungie is my dad’s nickname; Burt has always called him “Bunny.” So whenever I have a bad day or I’m sad about my lot in life that’s what my mom says – “it’s not so bad it couldn’t be worse, Bunny”. And she’s always right.
Family is highly under-rated and often unappreciated. When you have a big family there are big opinions, big love, and big realizations after you get beyond a certain age. My brother Mike just called. We have a special connection. He's going on a spiritual retreat on the Magaguadavic River in New Brunswick and I get that. He has a camp that he built on that river and for a month he is going there alone to get back in touch with himself and the river. The Magaguadavic is a spirit place. You can feel the purity and peace. I think it changes people. You can be close to God there - if you only listen. Michael is going there to listen. Mike is several years older than me and we didn’t grow up with the same circle of friends. He went out west at one point, married young and had a son. I was off doing very different things, going to school, growing up. We always talked at Christmas and most birthdays and we believed that the family was close and functional – at least I did. Years later it was Mike that enlightened me about his side of the family story, and he made me understand why I left home at such a young age. But we bury things so far underground it’s tough to unearth the truth sometimes. I didn’t know Mike was an alcoholic, I just knew that mostly everyone in the family was a drinker. Mike and I started reading the same self-help books. He went to AA and we both became big fans of Dr. Wayne Dyer. We started talking about enlightenment and spiritual journeys and getting back to nature. I confided to Mike that my childhood wasn’t always that good. I hated the alcohol and the sickness, the way people changed when they were drunk, and I hated always feeling angry and neurotic. He said, “Why do you think you left at 17?” and a door opened for me letting in a thin breath of understanding. Of course. I left because I couldn’t take it anymore. I couldn’t take the thin walls, the truth hidden in an alcoholic haze. Everyone in denial. And it still is hidden by some. If you ignore things for long enough will they go away, vanish like dust? No. Sometimes they fester and become disease.
The wall of self-help books appears. The woman picks up her latest book and sits at a desk.
I’m reading a new self-help book called Healing Multiple Sclerosis by Ann Boroch. So far it is the most enlightening book yet – I can’t believe the similarities in Ann’s journey and mine. The difference is, she was much sicker than me and she healed herself. She also became a Naturopath and a Clinical Hypnotherapist, among other things. In the preface to her book Ann says, “…health is a choice,” and she goes on to say “But this is not enough to maintain health if you are making unhealthy choices, entertaining negative thoughts, bombarding your body with depleted foods, overwhelming it with stress, and holding on to it with fear-based emotions.” Wow, that’s it. There is my Holy Grail. I think that is me in a nut shell. But where do I begin? Reading the entire book will be a start. I went on to Ann’s website and she’ll even do sessions via Skype. More baby steps. More hope. Sign me up.
Woman opens laptop at desk, lights dim
I am typing in the dark. This won't go on for long - my eyes are bugging out. Today is Nov 1st - the big day. I'm going to take my camcorder with me to the procedure to see if they'll let me roll it while they fish around my veins. This is what we have come to - this is the new normal in operating theatres; "say can I bring some high tech equipment in with me while you do your work? Honestly it's small, it won't get in your way." We are so bold these days, like Americans. And guess who is doing the angioplasty procedure? Big bold Americans, and I couldn't love them more. I am looking forward to meeting Dr. Mandato. We joked about George Clooney playing him in the movie. I think after this whole CCSVI/MS veins versus auto immune madness settles down and doctors begin to publish their work, there must be a movie made. It will be a co-production with the U.S. and Canada of course.
My husband is going to record me walking down the hall today. I'm feeling fine. I have come to terms with this. But if I can lose the fatigue that would be awesome. Whatever, I'm just going down the road. I stuck my thumb out to the passing cars and one stopped. Thanks for the lift buddy, don't mind if I do.
Wake up, shower, go to Walgreens for Valium, proceed to clinic. Easy as pie, and if you’ve got a credit card with enough credit, get an angioplasty.
Projected images of angioplasty on wall. Chorus comes in to perform the procedure.
The procedure is simple – overseen by an interventional radiologist and performed by a nurse practitioner. The nurse makes a small incision in my groin, I don’t feel it, and he proceeds to fish a catheter with a small camera on the end into my body. Fishing in another world. A sea of twisted veins and mystical things. The unknown. There is another nurse, Michelle I think, close to my right ear, watching me and talking to me –
Chorus “you okay? You’re doing fine. Did you feel that?”
And I am fine. They watch on monitors as dye is sent into my veins. They watch for stenosis, a narrowing of the vessels. I feel calm and safe. I noticed a slight burning in my neck as the nurse balloons my right jugular vein and then my left jugular but it is not unbearable. They fish around some more looking for a new path on the way to the azygous vein in my chest. They began to balloon and I searched for Michelle with my eyes. “That kind of hurts, is it supposed to feel like that?” She says that is perfectly normal and I believe her – I have no choice.
The woman sits up and the Chorus leaves with equipment.
You’re in a pretty vulnerable position when there’s a catheter dangling from your groin. And what I came to realize later, after my procedure, was that my veins were uncharted territory. The medical pros knew how to fish a catheter but they didn’t really know what was going to happen. It was all kind of experimental and I was just another guinea pig. But they treated me as nice as any pet in their care. I think they hoped for the best and so did I. I didn’t feel anything profound on the table, like some do. Some people move fingers and toes for the first time in years, some feel and see their faces flush. Blood flow, it does a body good. After a 45 minute procedure I went back to my hotel.
I spoke with the Dr. Siskin the next day. He said "call me Gary." He’s the guy we’ve been following since the beginning. He’s like McDreamy from Grey’s Anatomy, but a little older and a lot smarter. He heads up the unit that performs the angioplasty’s and we want to send him chocolates and flowers, and tokens of our love and appreciation. Instead, we hand over our credit cards and hope for the best. Hope. The first time I called the clinic in Albany this is what I heard on the other end of the line – “Hello, Hope speaking, how may I direct your call?” I was stunned. I said “what is your name?” “Hope,” she replied sweet as sugar. Wow I thought, this can only mean good things. They checked my veins one more time and found they were holding, they hadn’t collapsed. So with fully functioning jugular veins I got in my car with my husband and little girl and bid Albany adieu!
The Woman is now at home after her angioplasty procedure.
New legs? Not yet.
We live in a time of quick fixes, fast food, and I want it now!
My procedure went incredibly well but I have not climbed Mount Everest, yet.
Today I woke up and did not feel like I had been hit by a truck and that's a good thing. Baby-steps. That's what it is all about . And hope.
Yes there have been changes since my angioplasty but I think I am still optimistically cautious. Good days, great days. No really bad days unless my emotions get in the way. One thing I have learned along the way is this: if your emotions are in a tizzy, if you are neurotic like me, it will affect your legs. Weird science.
The first night back in my own bed, lying with a pillow under my knees, my legs started to tingle. And then they burned so that it was almost uncomfortable. Blood flow?
Twelve days after my procedure we went out to dinner (me without a cane), and when we got home and I was relaxing there was something very odd. I took off my socks and my right foot was bright red and almost hot to touch. My left foot was white and cool. Hummm. This has since happened one other night.
Yesterday I felt amazing. I stretched on the rug with Ella Grace working on my balance. My energy level is way up there! My only problem is that I am trying to do too much at once. Something dawned on me as well. I just turned 46 and I am not a kid. I don't have to feel like a kid. It will take me a bit longer to feel myself again. And that's ok. That makes me slow down a little and realize I must be patient.
Ella Grace wants to make snowballs on the deck, gotta fly!
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