Zombie Hordes

Two steps at a Time coverAs I got off the bus and started towards home, a group of high school boys got off the bus and started walking behind me. I could hear their conversation and all of a sudden, it became quiet, almost stilled.

Then I heard the sound of laughter. “Hey man, look at this.” I heard one of them say. “Look at how he walks.”

I heard them shuffling behind me but didn’t stop to turn around. I didn’t stop walking, I just kept moving forward. Another one said “Come on guys, come on!”

The group of them crossed the street and started walking to match my pace. Only they were exaggerating my movements. One of them was walking dragging his feet, another was walking with both feet pointed inward taking huge, big steps.

It amazed me that, in trying to humiliate me, it just showed how cruel they were. I stopped, watching them. The zombie horde stopped, too.

I never know what to say in situations like this. I have a lot of bravado and bravery inside of me, but it always seems to leave me when I’m confronted with people making a comment about, or in this case mocking, my disability and disease.

Normally, the words just flow off of my tongue or out of my fingers, but in that situation, I never know what to say. It’s like my words shrivel up and I can feel them drying out on my tongue. One of the people I know has suggested I carry card with me with info about Multiple Sclerosis and Cerebral Palsy, but even if I had those done, I wouldn’t be able to hand them out to a group of teenage boys.

I did the only thing I could think of: I took a bow. It involved no words but let them know that I had seen them, each and every one of them. They had the good grace to look somewhat sheepish. I didn’t think it was worth it to say anything to those that wouldn’t listen.

All I can do is repay unkindness with kindness. All I can do is brush away the malice and welcome in the light. Tomorrow is another day and for that, I am thankful.

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730 Days and Counting – Milestones and Simple Victories

Two steps at a Time coverI’ve been lucky enough to have a couple of milestones in the last week.

On Friday, it was my two year anniversary of taking my Copaxone medication. I will admit that, at first, the thought of injecting myself every day with a needle didn’t appeal to me.

I remember my first appointment with the home visit nurse. She was very comforting and there was even something that I could practice on before giving myself my first injection. I still didn’t want to inject myself but knew it would have to be done.

So that I wouldn’t forget, I made my needle part of my morning coffee routine. I would pour myself a coffee, take a sip for strength and then go and take my shot. Over time, it became less of a hindrance. It just became part of my every day life.

When I first received my Copaxone medications, I also received a box of literature and a journal so that I could keep a daily record of my injections. Multiple Sclerosis plays havoc with the memory, so the journal is a blessing.

On Friday, I reached the last day in my current journal. They have enough days in it for 365 days. This was the second journal that I had completed, meaning that I had been taking my Copaxone treatment for two years.

I wrote my Copaxone nurse and asked for a new journal, thinking nothing of it. She wrote me back with this lovely note:

Wow, you started your Copaxone treatment 2 years ago, congratulation on your milestone. Be proud of yourself, for being committed to your wellbeing and keeping the MS stable.

That note made me sit back and take notice.

Having Multiple Sclerosis and Cerebral Palsy is a daily battle. On one hand, the CP causes me to be in pain every day to some regard. Since I have started taking Baclofin, the spasms have lessened, but they are still there. I sometimes wonder what it would be like to be pain free and I can’t imagine what that would be like; I know no other life but this one.

The MS comes with its own symptoms: brain fog, fatigue, memory loss, speech and sight problems. The MS also causes spams, so I’m never sure anymore whether it’s the MS or CP causing them.

So, every day when I drag myself out of bed, I go through my rituals as if I am preparing for battle. It is a battle, every damn day. However, I’ve been so busy battling life that I sometimes forgot to celebrate the milestones and simple victories.

I’ve quit smoking, changed my diet completely and have taken on an exercise routine. I have embraced Reiki and meditation. I walk four times a day, every day. I’ve participated twice in the MS Walk, first walking 3 KM and then 5KM.

But I forget that even something small can be a victory too. The first time I was able to take the trash out again, the first time I walked to work again. I have to remember those small victories that have marked my path from then to now so I can appreciate the milestones.

I had another milestone yesterday.

I had my appointment with my neurologist. He was very impressed with how far I’ve come and said that I’m even stronger than I was six months ago. With no new lesions seen in my last MRI and how well I’m dong, I’m now on annual appointments. I will no longer have an MRI and follow up appointment every six months.

Instead, I will only have an MRI and follow up once a year. That is just amazing to me and is the result of everything I’ve done to get from there to here, my small victories and milestones marking each step along my path.

I need to remember that, though I may be in a battle mode all the time, I have to stop and observe those milestones and celebrate the small victories. For life can’t be only had in battle.

Life is for living and I can’t ignore what makes life so awesome, can I?

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Happy 2nd Birthday Max Shadow

Two steps at a Time coverI almost forgot that tomorrow, August 21st, is Max’s Birthday.

Two years ago tomorrow, I was diagnosed with Multiple Sclerosis. I had to learn to walk again, to speak again, to see again. My entire self was wiped away and I had to lean who I was with this new person inside of me.

It’s been one hell of a year. More than focus on where I came from (I’ve already written about that), I want to take a look this year at where I’m going.

I’ve learned even more about myself this year. I leaned that perfection is an unrealistic goal, no matter how much I strive towards it. Instead of hoping to achieve perfection, I’ve been focusing on just living as much as I can.

I’ve learned that it’s okay to ask for help. I have a difficult time asking others for any kind of assistance; call it being stubborn, too proud, whatever. The fact remains that I don’t normally like asking for it and prefer to do everything myself.

However, asking for help doesn’t mean that I’m weak. Instead, it means I’m strong enough to ask for help when I recognize that I need it. It’s not a swallowing of pride; more, it’s knowing that there are those who want to help support me and I have to let them.

I’ve learned about the healing properties of joy and laughter. Too often before, I was stuck in the darkness not able to pull myself out. Now, every time I’m feeling the darkness pull me in, I smile. The smile may be forced at the beginning, but eventually it reminds me that I have a lot to smile about and the joy follows close behind that smile.

I’ve learned how lucky I really am. Every time I see or hear of someone worse off than me, I think: ‘that could have been me’. I realize how lucky I am to be living the life that I have and take stock of my situation. I know that each person’s experience with MS or CP is different and I have my own life to live.

More than anything, I’ve stopped hating the MS. I talk about self-love a lot and often say that I love all of myself. That wasn’t true. I would say I loved all of myself but internally, I would utter: except the MS. I hate Max Shadow.

I’ve had to learn that it’s just part of me, of who I am. It doesn’t define who I am, much like the fact that I have CP or that I’m gay. Those are just parts and pieces of who I am, but they do not define me or the direction my life is going in.

How can I love all of myself and not love the MS? It’s done a lot of great things for me: The MS has made me realise what really matters in life. It’s shown me what true thankfulness means. It’s forced me to live better, eat better and to take care of myself.

Out of everything I’ve learned this year, I’ve learned to love. I love all of myself. Sure, the MS may make things difficult from time to time, but there is much to love about what I’ve struggled to become.

Max, I want to thank you. Thank you for forcing me to live the life I never knew I wanted. Sometimes, you’re a bit of an asshole, but then again, isn’t everyone? So this year on your birthday, I want to give you my thanks and give you a hug.

Let’s have fun this coming year and keep on trucking, okay?

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Time Heals

Two steps at a Time coverI’ve been trying to figure out why I’ve been so out of sorts as of late. It finally dawned on me this evening. It’s the anniversary of my dark time.

In 2013, I became sick In January and was bed ridden. I went back to work in February but became even more sick. After going to the hospital, the neurologist on staff said he was pretty sure he knew what it was, but had to run some tests.

After those tests (blood work, vision testing, a spinal tap, etc) I finally found out in April that I had Multiple Sclerosis. I thought I was okay with it. I was born with spastic Cerebral Palsy…what was one more issue? I already had a disability, what was a disease on top of that?

Quite a bit, as it turned out. By May, I was depressed, By June, I was in the shadows. By July? There was only darkness.

My body was no longer known to me. I had symptoms that were foreign to me. I slid, more than fell, into a crippling depression. I couldn’t find any joy and all I wanted to do was escape from my life. All I wanted was for everything to stop. I wanted to get off the ride that my life had become.

I was given medication to help with the spasms caused by the Cerebral Palsy. I contemplated taking my life at one point and was given counsel by my mother. “I didn’t raise a quitter.” She said. “Don’t you quit on me now.”

I didn’t. It took all of my strength not to quit, not to get off of the ride. I’m so glad I didn’t because in August of that year, what I carried within me was given a name: Multiple Sclerosis. I found out the day before my birthday.

It’s taken me a while to figure out why I’ve been so off, why I’m more quick to lose my temper lately or why, despite the amount of great things that I have going on in my life, I’ve also been strangely sad.

This is actually a good thing. It took me so long to figure out why I was a little despondent. So that proves a few things to me:

I’ve grown a lot in the past two years. Pain does heal. You can learn from everything that life throws at you. That, even though at the time I thought I would never forget the time and exact dates that everything had happened, I have.

So what does all this mean?

It means that even though you may think your life is over, time does heal everything. That, over time, things become softer and less out of focus than they were. It means that I’ve grown beyond who I was during that dark time into the person I am today.

I am by no means the same person but I’m totally okay with that. And that’s pretty freaking awesome.

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Pooped (Pun Intended)

Two steps at a Time coverI take three medications every day.

I take Copaxone to help halt the Multiple Sclerosis. It’s doing a bang up job, thank goodness. I also take Backlofin and Vessicare.

The Backlofin helps prevent or lessen the spasms that are caused by both the Cerebral Palsy and the MS. The Vessicare helps with my bladder problems, enabling me to urinate. Before using the Vessicare, I had frequent issues with my bladder (which I wrote about HERE), sometimes not even able to go for days at a time.

The only issue with each of these pills is that they both produce constipation, and I get a double dose of that.

When I was first diagnosed and started taking the Backlofin, I wasn’t able to poop for six days. I did what research I could and asked for advice from my MS nurse and doctor. They, and the books I was reading at the time, all suggested one thing: Ducolex.

For a time, this worked wonderfully. It was a laxative that you could take before bed and, in the morning, presto! Then it started not to work so well. So I bumped the dosage up to two pills a day. The information I’d read about it said you could go up to three pills a day, but I didn’t want to go that high.

I’ve been taking Ducolex for about two years. A few weeks ago, it became all too easy to defecate, sometimes up to three times a day. I started doing a bit more thorough research about taking Ducolex and learned a couple of things: it’s only to be used for occasional constipation and is actually a cause of cancer in very long term usage.

So I resolved to cut the pills out. I figured I didn’t want to shock my body too much, so went down to one pill….and wasn’t able to defecate for three days. I read everything I could about having a proper bowel movement while on meds (not the most thrilling reading material, I can tell you) and they all said the same thing: more fibre, more water, go for walks and exercise.

I was already doing all of that: I go for two walks a day, exercise three times a week, drink water and tea and eat a healthy diet full of fruit and vegetables. There had to be a way that I could take in more fibre with my diet.

One of my friends told me about Metamucil. It’s full of psyllium fibre. To increase your amount of fibre with fruit and veggies, you’d have to eat a shitload of them (pun intended). With Metamucil, you work your way up to three glasses a day and it helps to keep you regular.

I’m now down to half of a Ducolex and, after this week, will be off them completely. I just have to realize a few things for myself: Not everyone poops every day. And the time of day where you have to poop can differ and change. Before, it was every day, first thing. Now it’s now, but I’m doing it in a healthy way.

So why am I talking about this on here? Well, I figure that there are lots of other people that are taking medication that causes all sort of side-effects, constipation being the most common.

If my doctors or nurses, or for that matter any of the books I was reading, had told me about Metamucil, it would have saved me a lot of grief and discomfort. And if I can help anyone else avoid that discomfort, than my job is done.

For me, it’s just another step towards a healthy life and that’s a great thing.

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Walk On and Love

Two steps at a Time coverFor the past few weeks, I’ve been experiencing problems with my speech.

All the words sound normal coming out of me, but I realize I must have mumbled when the person says “I’m sorry?” or “Pardon?” I sometimes have to repeat myself three or four times, each time hearing the words right when I speak them, but apparently they are not coming out right. Sometimes they sound garbled to me coming out of my mouth. I just have to start again and speak slowly and the words come out eventually.

I’ve also had reoccurring trouble with my vision. Mornings are most difficult for me. My vision is blurry. I clean my glasses hoping that will help, but it never does. There’s also the fatigue that comes on me with no warning, the muscle spasms caused by the MS and the Cerebral Palsy.

But you know what? All that is trivial.

I’m often told that I’m an inspiration to others for my strength. I know I’m strong, but the MS has forced me to be stronger, to reach further, to take that extra step when I don’t feel like I can. It’s forced me to fight against my body and, nine times out of ten, to win.

I know that a lot of that strength comes from how I was raised, that my mother would never let me quit or give up, despite how much I wanted to. It’s that strength that shapes my will to live. To experience every moment, to live as much as I can to the fullest and embrace every opportunity that comes my way.

On April 27th of this year, I took part in the MS Walk. Last year, I walked the 3KM walk and by the end of it, I was done. I couldn’t walk any further and was wobbly on my legs. I was spent and was weak for the week after the walk.

This year was a complete difference. I walked with my mum, my partner and my friends. I wanted to go further this year, so we elected to walk the 5KM walk. I was a little worried about waling 5KM all at once, but made a deal with everyone walking with me. If I couldn’t feel I could do all 5KM, we would turn off at the 3KM mark and finish off the walk.

However, this year was different. I’ve been doing my workout three times a week, I’m stronger in mind, body and spirit than I was last year. When we reached the 3KM mark, I wondered why it had seemed like such a big, impossible thing to do last year. I walked on.

I had finished the 3KM walk in just under an hour. The 5KM walk took us an hour and a half. I wouldn’t have been able to do this two years ago. Don’t worry though, I’m not going to take on the 10KM run. That would be madness. I’m just thrilled that I was able to do what I thought would be impossible.

As much as I inspire others, I draw inspiration from myself when I can do things I didn’t think possible and from other people that inspire me. I’m blessed with a lot of people who love me and they are proof positive that love can indeed move mountains. I’m going to keep walking, keep living, for as long as I possibly can.

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Remembering To Be Thankful

Two steps at a Time coverOn Monday of last week, I had my MRI results appointment.

I wasn’t really sure what to expect. I would either be told that I had new lesions and had to go on stronger medication, or something else altogether. The neurologist went through the normal tests: my reflexes, the strength in my body, my eyesight. She had me attempt to walk across the floor heel to toe.

One of these days, I will be able to do this, but I only managed one step without falling over. It’s become a goal of mine that, one day, I will walk across the whole floor of the doctor’s office walking heel to toe; but that’s for another day.

We went through what I had been doing to better my life: I’ve changed my eating habits to a Paleo diet, it’s been over a year since I quit smoking. I do a three times a week exercise routine. I walk everywhere I can and manage up to seven kilometers a day. I had started doing a meditation routine and doing self-Reiki treatments.

She smiled and said I could sit up. My partner was on my right and my mother was beside him. We waited to hear what she had to say.

I was surprised that the computer screen wasn’t up showing what the inside of my head looked like. Though the MRI images were a little frightening, I always thought that they looked like a galaxy inside my head, the dark sky dotted with stars and planets. When I looked at the MRI, I felt like an explorer in my own head.

The neurologist smiled when she said “There are no new lesions. The Copaxone is working so we’ll continue with that.”

I wasn’t sure what to expect, but it wasn’t that. I always assume the worst going into these appointments, that way I will have less to overcome when I have to confront the outcome.

I am so used to fighting, battling, climbing every hill, scaling every obstacle that I sometimes forget that great things can happen to me. Thankfully, life gives me a reminder every now and again.

I was filled with light in that moment. I let out a breath I must have been holding for days, it seemed to go on forever. I don’t remember what I said, probably something along the lines of “That’s great” or “That’s fabulous.” I was in a daze of happiness.

She went to get the resident doctor and she came to speak to me. She went through the results again and my mother asked to look at the MRI. When she turned it on, the screen showed the galaxy contained within me. Only this time, it wasn’t so frightening.

My partner Michael said it was no surprise about the results. I was better than I had been and getting stronger. There were still some issues to deal with including fatigue, brain fog, slurring of speech, balance issues. However, these had become par for the course.

What I learned that day was that I didn’t have to fight myself all the time; I just had to live the best life I could. I learned that it was okay to be thankful for my life as it was, that good things can happen despite, or because of, everything.

I was thankful that my mother and Michael were there with me at what was the best appointment I’ve had in years. We were all smiling and I could feel the joy overflowing out of me.

Michael dropped us off at Rideau Centre. We walked into the mall when I stopped my mother. “Mom, wait. Happy dance?”

And so, in the middle of a mall hallway, my mother and I shared a happy dance because we had so much to be thankful about.

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