My 11 years with Multiple Sclerosis

In March 2003, I was diagnosed with Multiple Sclerosis. I was 28 years old. I had just graduated from Naturopathic College and had started my residency.  Within a span of a week, I lost all feeling in my left leg and my right foot.  I needed a cane to walk around.  I would make it to work, my boss would take one look at me and send me straight home. I would stop in the middle of a grocery store and crouch low to deal with the pain from muscle spasms. Then, several weeks later, I started to have double vision.

I remember waking up the day after my diagnosis. Swinging my legs over the side of the bed, burying my head in my hands and sobbing.  I was so afraid.

I remember telling my husband it was okay if he wanted to leave me.  We had been married 3 short years and just moved into our first home.  I told him he didn’t have to take the whole “in sickness and in health” seriously.  I understood if he didn’t want to stick around and watch me potentially lose my mobility, my sight and other pieces of myself to a disease that was ravaging my brain. He didn’t leave. He cried instead.

I remember the panic that set in when the doctors told me my prognosis was bad.  That my MRI results were worse than they had anticipated and it was best if I started aggressive treatment as soon as possible.

But I couldn’t.  I wanted children.  I couldn’t take the drugs and still try to conceive.  Besides, I was a naturopath remember?  There had to be another way.

The doctors told me to “Hurry up and go have your kids so we can start treatment”.  Well, as luck would have it, that didn’t happen either.  It took me 3 years to finally get pregnant with the help of in vitro fertilization.  Remarkably, I was in remission for those three years.  I never relapsed.

I have never relapsed again. I have been close. This month I was scarily close. I lost feeling in my left leg again. Started tripping up the stairs again and had to be extra cautious walking and exercising, but I have recovered for the most part.

To be clear, I never fully recovered from the first episode but I did remarkably well.  If you look at me, you would never be able to tell that on any given day the amount of feeling I have in my left leg varies like the weather. At night, in the comfort of my home, I stop compensating.  My husband will see me limp.  My boys will ask why I am walking funny.  If I haven’t slept, or if I have been overly stressed, my eyes let me know.  The tell-tale double vision returns whenever I look left. Not for long, just long enough to let me know it’s time to slow down.

But 11 years after diagnosis, I am not afraid of losing my mobility.  I am not afraid of losing my sight.  I am not afraid of this disease.

In fact, most times, I consider it a blessing in disguise.

The diagnosis 11 years ago, which incidentally has not been confirmed since I never had a second episode that lasted long enough, changed my life for the better.  I don’t take my mobility for granted.  I don’t take my sight for granted.  I don’t take my life for granted.

The disease has taught me to listen to the whispers of my body.  Sleep when I have been pushing too hard.  Take a breath when the stress is too much.  Eat well. Exercise regularly. Choose friends wisely. Avoid drama.

This is good advice generally. We should all do this. But my type A personality never knew when to quit before the illness and truth be told, I still have trouble stepping on the brakes, but MS has made me try harder to strive for balance.  Those close to me may argue that I am still failing miserably at trying to balance my life, but they didn’t know me before I got diagnosed.  This is an improvement.

When I see patients in the clinic that have been told their test results are positive, that their prognosis is poor or that the odds are not in their favor, I want to scream at them to ignore all of it. We are more than test results, more than statistics, more than data points to plot on a graph.  We are individuals with challenges.  We don’t have to let those challenges define our lives.

MS reinforced to me that people are more than the sum of their parts.  There is a whole other part of us that science and medicine can’t figure out. For all intents and purposes, I should be in a wheelchair.   I should be heavily medicated.  I should be sicker than I am.

But I’m not.  I am fine.  I am healthy. I am happy but most importantly, I am more than an MRI.

 

How Hockey Camp Almost Killed Me and Other Tales from our March Break Madness.

These past two weeks, my children have been on March Break. I had this vision of March Break similar to how I have envisioned Summer breaks, Christmas breaks and March breaks of the past.  In my vision, I am free of being the chauffeur.  Instead, I sit in my pajamas at the kitchen table, drink tea, get lots of work done, catch up on my paperwork and the boys play and keep themselves occupied. 

 You would think that I would have learned by now that this is not how it tends to unfold.

 This March Break, I also planned on renovating my clinic, organizing my tax documents and working on my next habit: decluttering my inbox.  I managed to get the clinic renovated.  The rest remained pretty much untouched as I am lying in bed Sunday night, trying to recover from what was undoubtedly the roughest March Break I have ever been through.

 You see, my husband and I had this great idea.  We would put the boys in hockey camp in Waterloo for the first week of March Break.  The boys would be happy, I would get to work and my husband would book some work travel while the boys and I stayed with my dad. 

 Neither of us realized how wrong we were going to be.

You see, hockey camp is BRUTAL.  I don’t know how hockey parents do it.  Getting the boys fed, packing their bags then driving to the other side of town to get them on the rink by 8:30 for 5 days in a row literally almost killed me.  They are only 6 and 8 so I needed to help them get all their equipment on and then tighten their skates.  The one thing I will never be able to do is tighten skates.  Although they loved every minute of the camp, by the end of the week, I felt closer to a full blown neurological relapse than I have in the last 11 years. 

 It took me the weekend to recover and then it was time for the clinic renovation.  It wasn’t a big job but considering my clinic consists of mostly women, it took considerable muscle and strain to get the job done. 

 In the meantime, my dad and brother were helping with the kids.  I appreciate their help immensely.  They adore the boys and the boys adore them.  They mean well, but my dad’s idea of childcare is McDonald’s and Bulk Barn while my brother believes Tim Horton’s is a perfectly reasonable place to have breakfast. Combined, they turned my generally healthy, well fed, well-rested children into sugar crazed, sleep-deprived animals.  I wanted to run away from them. 

Meanwhile, my kitchen was being renovated while I was away.  Icing on the cake.   I came home to a dust covered, cluttered disaster of a home Friday night and spent all day Saturday washing every dish I own and then organizing the whole space.

So now I lay here on Sunday night, two well-fed boys in bed, a brand new beautiful kitchen downstairs and a newly renovated clinic space waiting for me tomorrow.  It turns out it was a pretty productive March Break after all but I am still very excited that tomorrow is Monday, the boys go back to school and I go back to work for a rest and maybe, just maybe, I will be able to put a dent in my inundated inbox.   

 

 

The Days are Long but the Years are Short.

One of my favorite books is “The Happiness Project” by Gretchen Rubin.  It is one of the few books that made a lasting impression on me and continues to affect the way I live my life.

There are many great parts to the book, but the one that was most influential for me was a section that discussed the challenges of raising children.  She describes the relentless demands, exhausting schedules and never ending days of parenting.  She also offers the following insight, “The days are long but the years are short”.  I think about this statement often and I’ll tell you why.

I struggled for several years to get pregnant.  I prayed, I cried.  I underwent several procedures and had countless ultrasounds, blood draws and injections.  And then finally, my prayers were answered and I became pregnant.  I was thrilled.  I did not dare complain throughout my pregnancy for fear that it would jinx my good fortune.  Finally, on Valentine’s Day 2006, my eldest son was born.

We brought him home, set the car seat down and didn’t know what to do with him.  We didn’t have any family support and we had no idea what to expect.  My son was a difficult baby.  He slept little.  He fussed a lot.  And that combination left me exhausted and low on milk.  The Naturopath in me refused to yield.  I insisted on nursing him, at all costs-probably a mistake in hindsight.  He woke often and we often started the day at 5:30am.  We sat in a rocking chair on the porch.  While I drank a large coffee, he watched the people on the street starting their days.  And from there, the day went on.  It was long.  He didn’t sleep.  I couldn’t take him anywhere.  He cried in the car.  He cried in the stroller.  I could take him as far as I could carry him.  We realize now that he suffers from motion sickness.  I would watch the hours until my husband came home and then quickly hand him over so I could get a break.  I felt terribly guilty that I wanted to get away from the baby that I had cried for, yearned for and prayed for.  Then, 2 years later came my younger son.  Another blessing.  Another miracle.  And from there it all became a blur.  Feedings, bedtimes, diaper changes and teething.  Like most parents, I was exhausted and weary.

Those days were so very long.  

And now, they are 5 and 7.  My eldest is smart and funny.  He tells tales and loves school.  He plays the violin.  There are times when I look at him and see my husband staring back at me and it never ceases to astonish me.  My youngest loves soccer and skips everywhere.   He plays the cello because violin requires too much standing for his liking.  I look at him and I am amazed at how he can be all sweetness and fire wrapped up into one little bundle of giggles and energy.

The years have flown by. 

How does this all relate to my habits and changing my life?  Well, the first thing I wanted to work on was the amount of time I spent on my smartphone.  I knew I used it too much and I knew it was a problem but I didn’t really understand how big an impact it was having on my life until I stopped using it so much.

My goals were to stop using the phone in the car and in the evenings before the boys’ bedtime.  Over the past 3-4 weeks, I have completely stopped using my phone in the car, except for calls on my Bluetooth.  So instead of constantly having my head down at the traffic lights or stop signs, I look around or I look in my rearview.  I am more aware of my surroundings.  I glance at my children.  Sometimes, they are staring out the window.  Sometimes they are having a silly conversation.  But regardless of what they are doing, I see them.  I see their animated faces or their eyes staring off into space.  I appreciate their beauty and innocence.  Other times, if I am lucky, one of them catches my eye in the mirror and flashes me a smile.  Those moments are golden.  We also talk more in the car since I am less distracted.   I learn more about their friends and what they did at school.

I also stopped using my phone as much in the evenings.  I have gotten better at this, but have to admit that I have my slip-ups.  But putting down my phone in the evenings has meant that I can truly focus on the task at hand-the task of mothering.  There are more conversations at the dinner table.  More giggles when brushing teeth and more stories before bed.  I am more patient and involved because I am not trying to send a text or email while getting a 5-year old to floss. I am simply being mommy and what I have found is that when I am focused on this one task, the task of being mommy, I am better at it.   I go to bed feeling more connected with my children and my children go to bed feeling more connected to me.

Generally, putting down my phone has given me a sense of calm, a grounding that I was missing.  It’s reduced the chaos in my brain and allowed me to be more present in my day-to-day activities.

Now, there is a downside to all of this.  Many people have asked me why I haven’t responded to their emails or texts.  A few are annoyed.  But you know what?  They’ll get over it.  I let them know that I am trying to distance myself from my phone.  They will know for next time that it might take me a little longer to get back to them and it will soon become the new normal.

This has been a tremendous journey for me.  Being a good mother is the single most important thing to me.  I consider it a privilege to be a mother.  I never want to forget what a blessing my children are and I want my children to think back and remember a mother that listened to them and was interested in them.  Equally important, I want to be able to look back and know that I was there for my children to my fullest capacity.

The years may be short, but that’s all the more reason to make the most of them.

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The Whisper Before the Scream….

My sister-in-law once told me that God whispers before he screams.  I don’t think you need to be religious to appreciate the message.  Often we are given signs-little nudges or indications that something is amiss or that something needs to change but we ignore them.  For some reason though, her words have stuck with me over the years and they have certainly played a big role in my first official habit.

It is not so much adding a habit as kicking a habit.  You see, I am an addict.  My phone is my lifeline.  I email, text, schedule, talk, browse and google nonstop.  At first, it was because I was starting my clinic and needed to be connected, especially since my clinic is in another city.  Then it was because we were renovating the house and I needed to stay on top of contractors, orders and deadlines.  The next thing you know, my smartphone has become an appendage.  I wake up and it’s the first thing I turn on.  I go to bed and it’s the last thing I turn off.  I check it non-stop.  I am the annoying friend that is always on her phone, the irritating daughter, sister and wife who is always distracted, the multitasking mother that can’t stop texting.   I always had excuses.  I have so much to do.  I am juggling so much.  I just need to send this message, make this call or quickly look this up.

Then I heard the whisper.   A couple of times, my son said, “Stop texting!”.  My immediate response was that I was trying to schedule a playdate, register for soccer or call the dentist.  An excuse to justify my behavior-but somewhere in my soul, it nagged me.

The whisper became louder.  I went to Evergreen Brickworks and lost my phone.  Ironically that was a day when I told myself I was going to put my phone away and focus on the time I had at the market with the boys. This was the day after two little boys were killed in a car accident in Parry Sound.  I looked at my children and appreciated them a little more, hugged them a little tighter and said a little prayer for the poor mother that had lost her children.  I told myself that I would be fine without my phone for a couple of hours and needed to focus on my children.

When I did look for my phone and realized it was gone, I was remarkably calm.  I have suffered enough loss in my life to recognize that there are worse things than losing my phone.  I left the boys with a friend and went hunting for it.  I never found it.  When I got back to the children, my friend had informed them that mommy had lost her phone.  My 5 year old’s eyes opened wide as he exclaimed “You lost your phone!  Oh my gosh Mummy!  That’s really bad right?  What are you going to do?”.  I looked at him and thought wow, there’s a problem when my 5-year old sees me as being so attached to an object.  It was very disconcerting.

Then the scream.   I ended up having to buy a new phone.  I left dinner with a friend after having just bought it and started downloading an app before I started driving.  I got to a stoplight and glanced at the phone to see if the app had finished downloading.  I didn’t push a button, I didn’t speak, nothing.  Just glanced at it.  Then I heard a banging on the window.  An older man was pounding on my window yelling, “Don’t do that!”.

Ok.  I get it.  I finally get it!

So here’s my first habit.  I will not touch my phone in the car.   I feel this is particularly important since I am in the car a lot.  I don’t text and drive but I certainly check my phone at the stop light or in traffic.  I also make calls on my Bluetooth, play music or am generally engaged with it in some capacity.   But now I have 2 young boys watching me.  I want to set a good example.  I don’t ever want them to text and drive or be otherwise distracted while driving.  How can I tell them not to do it if they grow up watching me on my phone in the car?  How can I tell them to put their phones down while I hold onto mine with a vise grip?

I also will not touch my phone after getting home with the boys after school.  I will put it away and not check it again until after they are happily tucked away in their beds.  I know it’s a cliché, but time is precious.  My boys deserve a few hours of my time that is uninterrupted by my phone.

This is the habit I want to kick.  I think it will be tough.  But I know it will be worth it.  I have heard the scream; it’s time for action.