The power of knowing a diagnosis…what is it like for the undiagnosed?

21 Dec

I am jolted awake by a throbbing sensation in my left hand. A tiny invisible hammer pounds at the top of my fingers. There is no visible sign of any tiny hammer and no physical evidence that work is being carried out at the painful expense of my left hand. I am left with only one option and fold my fingers into a fist, shove my hand into my pockets and begin my day.  I go to work and wear the disguise of a healthy person.  No one sees or hears the tiny hammer’s relentless attacks.  I am uncomfortable.  The invisible hammer’s work pulls my focus from my day’s activities.  During my meeting at work, I lead it sitting on my hands. I adjust my tasks so I don’t type; e-mails are left unanswered, but I can wear my disguise.  By lunch, I begin to question my sanity.  No one can see this hammer, I can’t even see it, but I can feel it pounding my nails and fingers.  There is something wrong.  I go to my computer and sacrifice my fingers for answers and type into the search engine finger pain and click on www.healthline.com and under causes I see the words multiple sclerosis.  I breathe a sigh of relief.  It is just a new symptom. I have multiple sclerosis and this tiny invisible hammer will now be a periodic nuisance that I will live with.

Oddly, I am grateful for my diagnosis as it legitimizes my experience; my invisible hammer has a name and it is believed and recognized. My diagnosis explains the unexplained, but what is it like for people that don’t have a diagnosis, that don’t have a term or a word that legitimizes their experience and their lived reality?

Advertisements

MS will not stop me from finishing my list!

19 Dec

I found a list of things I wanted to accomplish. I made this list before MS came into my life. I wrote this list when I was up in the mountains with my two best friends.

My Dreams of accomplishments and things to do for a fun life
1. Go to Den Haag and see Ellen and the Kids again and bring a friend so I can share with them the magic of Den Haag
2. Go to Ireland, Hike in Ireland and find a pub with a thatched roof and two old men sitting at the bar. I get to sit beside them and eavesdrop
3. Go to Scotland
4. Camp in the mountains of Canada
5. Go out East and visit Halifax, New Brunswick, The bay of Fundy, PEI and New Found land
6. See Northern lights
7. Play five songs on the guitar
8. Learn to sing again
9. Write a short story * I did that
10. Write a song
11. Take an art class
12. Be a live nude model for an art class
13. Go on a canoe trip
14. Ride a horse again did that on June 22.2011
15. Take a belly dancing class
16. Runn/Jog a 5Km
17. Write a letter to an editor on an issue I believe in
18. Learn to knit
19. Get my degree
20. Scuba Dive
21. Go sailing
22. Ability to do ten man push ups
23. Go to New York City again and read the Sunday New York Times in a cafe in New York
24. Try in door rock climbing
25. Try out for a community play
26. Go to Italy
27. Go to India and meditate
28. Go to Denmark and see Mette
29. Find a partner risk my heart
30. Perform at an open mike
31. Buy a good camera
32. Take a photography class
33. Go ice fishing
34. Seen Peter’s Ballet live (I buy the ticket)
35. Travel someone where completely alone
36. Be a mother
37. Order a room, service Sundae
38. Be an extra in a film
39. Learn to throw a football
40. Write down your own mission statement and live by it
41. Learn to juggle three balls
42. Go up in a hot air balloon
43. Go to a nudest beach nude
44. Visit a real blues bar in Chicago
45. Write a letter to every person in my life I value
46. Cook a five course meal for my closest friends
47. Shake hands with someone who has had a positive impact on the world and who has made great change
48. Attend a music festival in another country
49. Stay up all night with a person I love and watch the sun set and raise
50. One day get dressed up and ask a stranger out on a date
51. Taken a day to do exactly what I want- A MANDI DAY
52. Milk a cow
53. Go to a sound of music sing along
54. Marry my best friend (but he can’t be gay)
55. Go on a spontaneous road trip
56. When I am a mother I will make a list of 100 things that I want to do with and for my child
57. Dance in the rain until I am 67
58. Meet a person from every continent
59. Listen to all 100 greatest hits as listed by Rolling Stone
60. Fill a journal from beginning to end
61. Win a Bingo Game
62. Go on a blind date that a trusted friend sets up
63. Get to hear a sound test for a favourite artisit
64. Make Pottery on a wheel (Ghost style with or without Patrick)
65. Take a train across Canada
66. BE with Mette, Nickie and Jenn again
67. Take a day to play every lottery ticket! It will be expensive but fun
68. Be strong in who I am and never stop learning or adding to this list! This is the beginning!!

I am back to blogging and I would like your help! Please.

19 Dec

I have not written in my blog for a long time.  I started my blog to keep myself motivated after my diagnosis of MS.  Those first years were  very hard and filled with so much uncertainty.  I didn’t know if I would ever be able to work full-time again, live on my own, go a day without collapsing into bed to take a nap, find love or finish my degree.  I was afraid that my life had been permanently sidelined. The MS had placed me in a time-out with no timer and like any child placed in time-out I fight against it.

On Tuesday December 20, it will be my five year crapiversary.  My intelligent cousin, coined the phrase crapiversary.  A crapiversary is the anniversary of a crappy diagnosis.  The first two years of MS were hard to put it mildly, but I kept pushing myself forward and revisiting my list of my dreams of accomplishments and things to do for a fun life.

I am happy to report that my list pushes me to move forward. If a goal cannot be accomplished like I had originally envisioned then I make an accommodation to my original goal, but I don’t give up on the goal. For example, Number 16 on my list is to run or jog a 5km, that was not a goal that I could not fulfill in its original form, but I could if I powerwalked it.  I now have two metals that hang from my lamp that remind me of my 5km powerwalk.  These metals show me that MS can alter plans, but they are not a reason to give up on plans. #19 on my list is finish my degree.  I am in my final year of my degree in Critical Disability Studies at Ryerson University. It has taken me 7 years to get here, but I am finally in my final year.

My thesis is a phenomenological study of women that are currently undiagnosed and searching for a diagnosis or were recently diagnosed and the experience of living undiagnosed is still very fresh.  I choose this topic because as a woman with an invisible disease, I understand what it feels like to have your body betray you.  I remember telling my friends that my hand was numb only to have them scoff at me because they saw nothing wrong with my hand.  I remember fatigue that I explained as a “cold” because without an explanation I would be perceived as “lazy”.  I met a woman where it took her 10 years to get a proper diagnosis of MS because her doctor did not listen to her.  It can be very lonely when you are in diagnosis purgatory. I want to listen to these experiences and let women know that their experience is not isolated.  My hope is that by collecting women’s stories that women that are living in diagnosis limbo that won’t feel so alone. If you know of anyone who would like to help me and share their experience of living in diagnosis limbo please leave a comment.  Please help me reach goal #19.

My Granny

2 Dec

Alyse Wylie 1927-2013

I am a romantic. It is not my fault.  I am a romantic because I know what true love looks like. True love is Gramps and Granny.  I grew up seeing true love in action. The way Granny would look at Gramps, eyes twinkling, giggling at something Gramps had said and the “Oh Bob” that would follow. When I was a child, I spent a few weekends with Gramps and Granny, on every trip I usually interrupted their kissing in the kitchen.  I grew up knowing that my Grandparents were deeply in love with one another. On those weekends with Gramps and Granny, Granny and I spent most of our time sitting at the kitchen table talking about love, life and my future dreams.  Granny unknowingly fueling my romantic tendencies with stories of the first time she met Gramps. She would tell me about how poor they were in the beginning, but it didn’t matter because they were in love. I loved hearing Granny’s stories.  I always felt like Granny’s stories were what happened after the fairy tale ended.  Granny’s life with Gramps was filled with love.  I remember Granny telling me, she didn’t like sleeping because she was so happy she didn’t want to waste a moment.  I loved spending time with Granny because she made me feel so loved and so special, like I could do no wrong.

 I have so many great memories of my Granny, but more importantly it is the feeling that is attached to all of my memories the deep love that I felt when I was with her. Granny had this way of making you feel so good, and that you could tell her anything and she would never judge you. Granny is part of so many special memories: Christmas dinners where everyone had a vegetable, our mutual love for a chocolate peanut butter cake, Granny and I playing Gin and Rummy, Granny teaching me how to knit, Granny video tapping Anne of Green Gables for me, Granny’s sneaky money under the place mat in the kitchen, watching Gone with the Wind, microwaving hot dogs, playing with the mini tea set, getting my cabbage patch doll for Christmas, Granny’s return from Florida with cool presents and in the later years shopping together for her “perfect shirt” (that couldn’t have pockets in the front, the neck line had to cover her scar, the neck line couldn’t be too high because she didn’t like turtle necks).   I don’t think we ever found the “perfect shirt”.

Five years ago, I made it my new year’s resolution to see Gramps and Granny once a month.  It was a great new year’s resolution. Gramps would pick me up at Kippling Station and then Granny and I would go “shopping”. We never really went “shopping”. We would have lunch together in the mall and sit there talking for hours only to realize that Gramps would be picking us up in a half hour.   We would hurriedly look through the mall together the majority of the time coming back empty handed. The one time we did actually shop, we were so tired at the end- we decided to get Kernels Double Butter Popcorn- we sat there on the bench devouring the bag of popcorn.  This memory doesn’t seem like much, but it was a really special bag of popcorn for Granny and me. I don’t why it was, but we always talked about that bag of popcorn after- I think it was because maybe we moved our talks from the kitchen table, to the restaurant now to a bench in the mall. Maybe it was because she really shouldn’t have had that popcorn because it made her blood sugar so high. I don’t know why, but that bag of popcorn we shared became scared to us.

Granny and I spent most of our time together talking about love and my dreams of finding my match, like she found with Gramps.  I remember it was at Gramps and Granny’s wedding anniversary that I came up with my “room of love” theory.  I was watching Gramps toast Granny. Granny gazing up at Gramps with a deep and abiding love for Gramps that I realized that we were all in that room because of them. Their love created all these wonderful possibilities and although our lives in the room weren’t perfect, if it weren’t for Gramps and Granny none of us would be here. The room filled with love is a room, that because of your positive actions, you have positive reactions and that creates beautiful opportunities for others. A room filled with love doesn’t have to be perfect, in my grandparent’s room of love there is heart break and not everything always turns out as you had hoped, but there is also beauty, learning and love.  I am deeply grateful that I was one of people in Granny’s room of love. I am a romantic because Granny encouraged me to be one with all of our conversations about love and life.  I believe Granny was a romantic too.  I am deeply grateful for my friendship and relationship I had with my Granny.

Facebook is not good for me or Goals Revisited

29 Sep

Goals Revisited

Goal 1) Power walk 5km in 45mins

Arm swing forward, shoulders are back and my legs move with gusto.  The beat of the music propels me. I am a power walking queen only beaten by the lady with the grey hair and the two walking sticks. I swear her walking sticks possess  magic properties, but I don’t care. The only thing I care about is my goal. My goal is to finish the Scotiabank Waterfront 5km in 45minutes. I don’t care about the people that can run it in 30mins. I don’t care about those who may snicker as I walk past the finish line at the 45min mark or even if I am last. I only care about me and my ability to finish what I started.

Now, if only I could apply that logic to my life.   At almost 35, single, still working on my degree and living at home (being diagnosed with MS set off events that ended with me living at home) I feel like loser. It doesn’t matter how I spin it; I feel like I flunked out of adulthood.  I never envisioned at 34.99, I would be living at home. Single. I look at facebook it reminds me of my failure as adult. My friends have houses, children.  When I really want to mutilate myself with images on facebook, I look up my ex-boyfriend to see his success as adult (two children and a white picket fence).  That makes me feel awesome every time! (That was sarcasm.)

WAIT! THIS IS PATHETIC!

I am focusing on all the wrong things. This is my life and yes, my life is far from what I imagined, but it is mine. I need to own this life of mine and own my decisions. I need to focus on my goals like my 5km. I don’t care how I accomplish 5km, just as long as I finish it. No person power walking that race will take away from my accomplishment. So, why am I allowing other people’s success to devalue my image of myself? This doesn’t accomplish anything.

 When I was first diagnosed with MS, I promised myself that I would handle it with a positive attitude.  I don’t think I have been handling the MS with a positive anything lately.  I have been focusing on what I don’t have instead of what I do have. I have so much. I have great parents, loving friends, a good community and an infinite amount of possibilities for my life. I may have not met my Mr. Right, but that doesn’t mean I won’t find him. I need to get to the work of making gratitude part of my daily life again. Goal- to focus on gratitude.

Goal update

1)     5km- did it and doing it three times a week

2)     Go on a date- Well, I didn’t do this yet. (I have given myself an extension for this goal until the end of November)

3)     Goal 3- see the ocean. Did it! I saw the ocean when I was in Newfoundland

4)     Goal 4- Get a good grade in my next class- I haven’t received my final mark yet ( I got two A’s while in class)

5)     Goal 5- Blog more- I was working on school stuff.

6) Focus on Gratitude

 Image

Learning Disability- Different Not Less

4 Aug

My grade one teacher’s words haunt me.  She thought I was retarded.  I talked out of the side of my mouth, I coloured outside of the lines and my spelling was “unique”.  If the teacher had asked me why I talked out the side of my mouth, I would have told her I thought it was “cool”.  I don’t remember the exact moment I saw Jean Chretien, but I know I was impressed.  I was mesmerized by the way he spoke; I had not seen anyone speak out of the right side of their mouth before. On my first day of grade one, I wanted to make an impression and talking like Jean Chretien seemed like the perfect way. My Grandmother loved Jean Chretien (a devoted liberal party member).  Emulating Jean Chretien did not have the desired effect on my class or on my teacher.  I was not ready for grade one.

 I was a chubby kid, teased during recess and lunch. “Big targets are easy to hit”, the boys yelled while hurling pine cones at me.  I spent my recess hiding behind the portables, wishing I could vanish.  In class, things weren’t much better.  My teacher’s disdain for me was palpable.  I was different. I stopped talking like Jean Chretien after the first week, but it was too late. Her impression of me was etched. The classroom was noisy and active. I had no desire to read or learn.  I wanted to play! In my class, once your work was done you could play.  The faster your work was done the more time you had time for play. I still remember looking at the page, scribbling ANYTHING, so I could free myself from the chain of work. I did not understand anything. My mind constantly wondered to magical imaginary places that were far away.   The classroom E.A’s permanent position seemed to be hunched over my desk; her perfume choking me while her well-manicured neon nails pointed at my work. She tried desperately to wake me from “my world”.

Midway through grade one my parents had me tested.  The testing took place in a small room, where there was nothing distracting on the walls and the room was quiet.  The tester was kind. She made me feel smart.  A feeling I had not had before, after our sessions I was labeled with a learning disability.  At the end of my grade one year, it was apparent I had not learned.  My parents wrestled with the decision to push me forward or keep me back a year.  I was held back. I failed grade one (along with six other students that year).

I am a grade one failure. I know the feeling of being in a room and not understanding a word.  Being in a classroom where the teacher’s words would bounce off the walls and I was unable to catch them. I desperately wanted to understand, but didn’t know how to begin. The gap between me and the other children was too large.  I retreated to my wonderful imaginary world where I was successful.  In the real world of grade one, I could not be part of the reading club that got the colourful new books. I was part of the tattered book club. We read faded copies of Dick and Jane who only seemed to run places, unlike Mr. Mugs the mischievous dog who did things.

 I have always been very self conscious of my intellect.  I still am.  I think it is this awareness that draws me to working with adults with cognitive impairments.  I don’t want anyone to feel that they aren’t smart. The teacher thought I was retarded and I saw and heard that.  I knew even at the age of six I was being treated differently.  It has taken years to shake off that self image; I am still surprised when I get a good grade.  The anxiety I feel before I hand in a paper is great because there is still that voice that tells me, “You’re not smart”. When I worked as instructor therapist for children with autism, I was told by a colleague I was too positive with the children.  Too positive and reaffirming! I don’t ever want a child or an adult to feel that because learning is hard for them that they are inferior.  In grade one, I felt inferior in the classroom. This feeling seeps into your identity and limits you; it cements you to your failures. I was a different child.  I did not fit into my teacher’s lessons plans. As Temple Gradin states, “I am different not less”.  It took me a long time to accept this, I learn differently, but I am not less.  I think this is why I am so committed to working with adults with learning disabilities, they may learn differently and they may experience the world differently, but they are no less a person.  I am committed to trying to create a world in which difference does not mean inequality.

Image

Goals- “There is no achievement without goals.”

5 Jul

In my last blog I wrote, “My immediate goals are to jog 5km, go on a date this summer, see the ocean, and get a good grade in my next class and try and blog more.”  I am repeatedly learning that having MS means that it takes me longer to achieve goals. The way I originally envision reaching my goals is always a little different (No surprise there).

Goal 1- Jog 5km

I was ready to conquer this goal! I bought the 5km running application for my iPhone. I believed that with the right outfit and song mix I was going to be running 5km in no time.  I knew this won’t be an easy task. I would not let the pesky facts that I have never been athletically inclined or MS stop me. One morning, wearing my cute jogging outfit that resembles a soccer Mom’s uniform, I was off to conquer my goal!  The app tells you when to walk and when to jog and over the course of a month you walk less and jog more until you are jogging 5km.  I started out well! One foot in front of the other walking straight and to the beat of Kelly Clarkson’s motivational song, “Stronger”. The jogging app interrupts the song to inform me it was now time to jog. Thrusting my arms forward, I began to jog (until it was time to walk again). I was feeling confident. Walking tall tingles started creeping up my leg and grabbed a hold of my left thigh.  It felt like my left thigh had inadvertently placed itself in an invisible blood pressure cuff.  With each step the cuff seemed to tighten around my left thigh, my left leg stopped wanting to jog and with 8 minutes left in my first jogging session, I did not give up, but I did submit. I walked the rest of my “jogging” session still feeling the cuff around my thigh.  I tried repeatedly to jog, each time taken over with tingling limbs. Committed to completing 5km in a race, I have now changed my app to a power walking app. I am a better walker than jogger.  I have broken limbs running.  I have never broken anything walking.  On October 20, 2013 I will be participating in Scotiabank Toronto Waterfront Marathon, Half Marathon, 5km.  I checked the results from 2012 and a person took an hour to complete it, this is an achievable goal.  I can do this.

Goal 2- Go on a date

This isn’t as easy as it sounds. I am not exactly Kate Winslet (I think she is beautiful).  I don’t have a British accent and I do not have a body that Leonardo Dicaprio wants to draw. I am pretty according to my mother and to a focus group of men over the age of 50. On rare occasions when the curly hair fairy blesses me with a good hair day, I can be attractive. I do have one big problem, I can’t meet men.   All the typical ways that you meet men, school, work or friends are dead ends for me. My class is all women.  I work in a job that is mostly women and my friends are married, coupled up or gay.  They all tell me that they don’t know any single men (they could be lying, but I am choosing to believe them).  It is hard to meet men.  This leaves me with only one option the INTERNET! I have had scads of bad dates. At 34, I am done with bad dates.  I don’t want to waste nights of good energy on bad dates.  I also don’t think the MS is something I should worry about  because with the right man it won’t matter.  Tomorrow night, I am meeting with my married friend to help me create a profile. I am following the guidance of Amy Webb and her insightful Ted Talk- “How I Gamed Online Data to meet my match”.

http://youtu.be/OF5VVrsnpzo

Goal 3- see the ocean. I am going to Newfoundland in August.

Goal 4- Get a good grade in my next class (Class starts Monday)

Goal 5- Blog more

Oops!

I am not good at this goal.  I find that blogging takes a specific energy. When I have energy, I like being out and about. My computer prevents me from going out, she isn’t “cool”.  My computer isn’t an apple.  I feel sheepish pulling her out at a coffee shop.  My computer’s name is Bertha. She is a big sturdy laptop with a great personality.  She and I enjoy watching netflicks together.  This is not a reference to Jane Eyre or Wide Sargasso Sea. I will try harder at blogging (maybe shorter blogs).

Image

MS will not prevent me from reaching my goals.