Remembering to Breathe

Two steps at a Time coverI have an MRI this evening at midnight.

I’ve done a very good job of not thinking about it all day but now that I’m home, it’s all I can think about.  This is the fourth MRI that I’ll be going through. I know what to expect. I suppose that’s part of the problem.

I’ll be rolled into a large metal tube. The tube has rings of metal and they will rotate as they take pictures of me through Magnetic Resonance Imaging. The pictures will show deep into my brain to see if any new lesions have developed.

It’s all rather fascinating…at least it would be if it wasn’t so unsettling. The MRI machine doesn’t leave you too much room to move around. I tend to get a little claustrophobic in small, enclosed spaces.

Then there is the dye they will most likely inject. The dye will run through my body and give them clearer pictures on what is going on. I will probably have a vest of some sort covering my chest and a contraption that never fails to remind me of Hannibal Lector that sits above and around my head so they can get accurate pictures of my head and neck.

I know this, I know all of this. I also know what will happen with the results. I have an appointment with my Neurologist on March 16th to go over the results. The results will determine whether or not I have to go on stronger medication. It all depends on whether or not new lesions have developed inside my brain.

I can’t think about any of that, despite the fact that the thoughts are never very far. I’m not ashamed to admit I’m nervous and a little bit afraid. However, I’ve survived much worse and come through in the end stronger and more determined to live. So this too shall pass.

I’ll simply use a mind trick that I used during my last MRI. It seemed to work well. When the machine starts, shaking the world around me with loud thumps and bangs, I’ll imagine the sounds are techno music. The last time, I could hear the music from Tron: Legacy by Daft Punk.

On the outside, magnetic rays will be taking pictures of my brain. On the inside, as soon as the machine starts, I will step into the music and I’ll be dancing. It’ll be over before I know it, one more notch on the path I am walking on.

I can almost hear the loud bass beat and the humming thrum of the treble.  I will remember to breathe and I’ll let the music take me away.

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After the Unhappily Ever After

Two steps at a Time coverI wrote this for the Payton James Freeman Essay Prize, but it didn’t place or win. That’s all good. I’m not bummed about it at all actually.

The important thing is that I wrote this essay, that I got it down on paper.

And now I get to share it with all of you. 🙂

Enjoy!

*

 

“You’re a broken man now.”

His words haunted me. They rang in my head through my sleep and repeated themselves again during my waking hours like a mantra. The sad part was that I believed him. I believed I was broken.

In January of 2013, I woke up to find my world had changed. I had no balance and could barely walk. The doctor at the clinic misdiagnosed me with Labyrinthitis, a disorder that comes from trauma to the inner ear. It would take two weeks to repair itself. It took longer than that.

It didn’t get better. I kept falling, kept going numb in parts of my body and was slowly losing my ability to function. I was bed ridden for close to a month. When I finally was able to go back to work in February, the unthinkable happened: I lost the ability to speak, went partially blind and lost the ability to type. I’m a writer. I was able to write 20, 000 words in a weekend. Now I couldn’t write a single one.

My brain knew the words it wanted on the page, but my fingers couldn’t hit the right keys. My mother urged me to go to the hospital. I agreed and was met at the emergency room by my mom and my boyfriend. After six hours, I was lucky enough to see a neurologist. He examined me and said: I’m pretty sure it’s Multiple Sclerosis, but we’ll have to run some tests to be sure.”

I could barely take care of myself. My boyfriend had to help me in and out of the bath. He could barely stand to look at me and, when he did, it was with a look of the utmost disgust. He could barely stand to touch me. I spent a lot of my time on my own, thinking my thoughts into a darkness that would never answer me back; it would only swallow them.

I had blood work done, an MRI, a spinal tap. They measured my sight and what I was able to do physically. Then began the waiting. For months, I didn’t know what was causing the war within my body and I withdrew from life as much as I could. When I did go out, it was with a cane or not at all.

Finally, after months of not knowing what was wrong with me, in April of 2013, I was diagnosed with Multiple Sclerosis. I would have to wait until August 21st, the day before my birthday, to find out what kind I had. I remember the look my then boyfriend gave me when the diagnosis was given. It was not one of support. It was one of disgust. When we got home, he looked at me and said. “You’re a broken man now.”

I was too shocked to respond. The truth is, I actually believed him. I believed I was broken. Never mind that I had been strong enough to walk again, talk again, write again. I believed him. I should have left him right then and there, but I thought: who else would want me?

Things became more difficult. I call May of 2013 my Dark Month. I had withdrawn from everyone and everything I loved. I would go to work and come home, seeing my boyfriend only when he had time for me. I know now that I was horribly depressed and lost within myself. I was unable to find my way out. It was as if I had died, in a way. I couldn’t find the trail of bread crumbs to find my way out again.

Things reached a very dark point for me. I remember the day well. I had been given a prescription for a pain medication while I was waiting to find out what MS I had and they could prescribe the MS medication. The pills helped with the spasms but they made me sleepy. I wondered what it would be like to go to sleep and never wake up again. I sat outside at work, that bottle of pills in front of me. I called my boyfriend and told him. “I can’t do this anymore. I just want to take all my pills and end it. I want to quit.”

“So do it.”

I was silent for a moment but then said: “Did you hear what I said? I said I wanted to kill myself.”

“And I said: do it.”

 

A piece of me shattered inside. I realized it wasn’t the MS that had me thinking I was broken, it was him. I hung up on him and did what I should have done in the first place: I called my mother. “I didn’t raise a quitter.” She told me. “You’re so strong, Jamieson, you’re stronger than this. I didn’t raise a quitter. Don’t quit on me now.”

 

It was my mother that kept me alive. I started doing what I could to get better, stronger. I remember looking at a magnet on my fridge that said: My life is up to me. So I chose to live, knowing that we only get the one shot at it. I needed to get back to living.

 

The first thing I did was learn to have a shower again. I had been having baths because there was no way I could stand and maintain my balance. Taking a bath on my own took a long time. I had to lift my legs carefully over the side of the bath tub and slowly inch myself down into the water. Getting out was more difficult, heat being bad for MS symptoms. However, it was the only way I could bathe.

 

Taking that first shower was perilous, but it was lovely. I was standing, supporting myself, strong enough to stay standing. I marveled at the ability to take a shower, something I had always done before was now cause for celebration because I could do it again. I decided to see what else I could to to take control of my life again.

 

I decided to take the garbage out myself. For months, neighbors had been doing it for me. There was a flight of steps and a long walk to the dumpster. I would not have been able to do that before. However, after months of essentially sitting still, I was desperate to move, however haltingly.

 

I remember getting all the trash together, taking the trashcan up the back steps and carrying it down the walk. It took me an hour and a half to do such a simple chore, but I did it. I felt a glow inside me and, for just a moment, I stood there by the dumpster and looked up to the sky, congratulating myself on what I had done. Like taking a shower, I had done what I thought to be impossible.

 

I started doing other impossible chores: cleaning the cat litter and ironing my clothes again (both of these required balance). I cleaned my apartment, did my laundry, even went grocery shopping. All of these chores took longer than they had before and I had to be careful doing them.

 

However, that wasn’t the point. The point was, with each chore, with each thing I hadn’t been able to do for months, I was taking back a piece of myself that had been lost along the way, gathering up the bread crumbs and finding my way out of the dark. Then, in October of last year, I did what I should have done months ago. I broke up with my controlling, abusive boyfriend.

 

He came over to get his belongings and yelled at me, raged at me. “I don’t understand. I’ve given you everything: an iPad, a Kindle, an entire new wardrobe! Wasn’t that enough?”

 

I shook my head. “No. I wanted your love and your support. Money can’t buy those. You have to want to give them.”

 

Finally, as he was leaving, he turned to me and said: “You’re broken! Who’s going to love a broken man?”

 

“I am not broken.” I said. “And I’m going to love myself.”

 

With him gone, I grew stronger. I was getting better not only physically but mentally as well. I was going out, taking classes, filling my brain with knowledge, reconnecting with friends. I started doing more things for myself and eventually I no longer thought of myself as broken.

 

In January of this year, I decided to try my hand at dating again. A lot of men couldn’t look past the MS though. Quite a few of them saw me with my cane and couldn’t even look past that. Even when I eventually stopped walking with the cane, many of them would run as soon as I told them I had MS.

 

I despaired at ever finding someone to love me as I was. I knew I loved myself, but thought that I would never find love, true honest love. I went on a handful of dates and none of them ever amounted to anything. They were with men stuck inside their own problems, their own issues. They didn’t have room for mine.

 

So instead of looking for love, I really focused on loving myself and being thankful. Once again, however, it was my mother who gave me some sage advice: “How do you expect to find love if you’re not open to it? You have to be open to the possibility of love.”

 

I had been emailing a man and decided to just lay it out on the table in all honesty before I met him. When I told him I had MS and Cerebral Palsy, his response was music to my ears. “It’s unfortunate that our society views illness or disability as a weakness when it is really a strength.”

 

I decided after that email, he at least deserved a coffee date. We’re still together six months later. Recently, he said to me: “I don’t see you as disabled. When I look at you, all I see is how awesome you are. You do more than people I know that don’t have anything.”

It’s been quite a journey, finding my way out of the dark. It may not be the life I chose, but it’s the only life I have. I’m going to keep on living it and remain thankful and grateful for everything in it. It’s taught me about thankfulness, about wisdom. It’s taught me that, no matter how difficult things become, I am capable of anything I set my mind to. That, just when life seems it’s bleakest, something will light up your way forward.

I’ve finally found my prince, but it’s not a happily ever after. Our story, our life together, is just beginning…

 

 

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When the Invisible Becomes the Visible

Two steps at a Time coverI’m lucky, I know that.

Unlike a lot of other people who suffer with Multiple Sclerosis or Cerebral Palsy, mine hide most of the time. I wear them under the skin and the way they affect my body usually can’t be seen by others.

I am in pain of some sort every day. The spasms from the Cerebral Palsy make sure of that; but I was born with CP, so it’s nothing new. Having MS makes it more complicated though as it causes spasms of its own.

Usually, the only time my CP/MS brings things out into the open is when I’m having speech problems or fatigue issues. There are times when I have spasms in public, but they pass quickly and I’m usually okay.

Well, that wasn’t the case yesterday. I was out for brunch. I went to get up and go to the washroom. When I stood up, I had a spasm in my right foot. It was as if someone was jabbing sharp needles into my foot.

I don’t know if I cried out, but I’m pretty sure I did. I had to hold on to the table to balance myself. I still had to go to the washroom so I began to move towards it. My right foot was still spasming so I had to step gingerly. That threw my balance off, so I had my arms out to catch myself if I fell.

As I walked towards the washroom, two women were coming towards me. They started smiling once they saw me coming nearer to them, not out of kindness but out of derision. They rolled their eyes and one of them turned to the other and said: “Drunk already.” I heard them laughing as they walked away.

I went to the washroom and as I was standing there, holding on to the wall to keep my balance, my face burned hot. I felt humiliated for something I hadn’t done. I squared my shoulders and walked out and back towards my table.

There was a couple at the table behind mine. They watched as I walked past, they gave me looks of the deepest derision, like I was contaminated by something. My cheeks burned brighter, out of shame or embarrassment I didn’t know.

I paid my bill as quickly as I could. I felt like everyone in the restaurant was staring at me. When my bill was paid, I went outside and began the slow walk home.

At first, I was mad at myself for not saying anything. I could have said something, especially to those two women. Something that would have made them realize I wasn’t drunk, that I had MS and CP, that there was a cause for my bodies odd movements.

Much as I could have said something to the couple at the next table over, told them to wipe those looks off their faces, stood up for myself against their rudeness. Then I was mad at my body for behaving the way it did. I was embarrassed and then mad at myself for being embarrassed.

It was not my body that embarrassed me, but the actions and words of other people. I wasn’t mad at the CP/MS (I’m never sure which one of them creates the spasms anymore) because they are part of me and of who I am.

I was mad that people were so quick to judge, that they would judge me without even knowing me, label me as a drunk. It’s happened before. Once last year, before my diagnosis, I was walking down the street and stopped to have a cigarette. My body immediately started being difficult to control. I started walking like one of the Walking Dead zombies.

A woman passed me and turned around and said: “You should do your drugs at home, not out here where others can see you.” She kept on walking leaving me too stunned to respond.

The thing is, I could have told the women or the couple at the table next to me in the restaurant that I had CP/MS, but would it have made any difference? They were still so quick to judge me, so quick to label me as a drunk. I didn’t want to tell them when they so obviously didn’t care and it was none of their business anyways.

However, I’ve resolved, upon further contemplation, that the next time it happens (and unfortunately, there will be a next time) I will tell them (in the kindest way I can manage) that I have a physical disability and a disease. I will tell them so that the next time they see someone who is having difficulty walking they won’t be so quick to assume that they are drunk or high.

That the next time, they will hopefully remember what I told them and treat that person with kindness instead of disrespect.

The next time, I will be ready.

Posted in Balance, discomfort, Spasms, Walking | Tagged , , | 2 Comments

Everyday Angels

Two steps at a Time coverI’ve been going about things the wrong way.

I had my third medical appointment this month. That’s quite enough, wouldn’t you agree?

The urologist appointment this afternoon went very well. It turns out that I just have a strong, overactive bladder made even more overactive because of the MS and CP. After the appointment, I breathed a huge sigh of relief.  I’ve been given another medication to help with my bladder issues. It was actually a lovely experience this afternoon; but it brought to mind something that I’ve been thinking about.

See the thing is, like most people, I don’t like doctors. I don’t like hospitals, clinics, doctors offices, etc. I know that a lot of people are like this, that despite the fact that the doctors and nurses are there to help us, a lot of us suffer from white coat syndrome.

I’ve seen an awful lot of doctors and nurses throughout the past year. As I’ve learned to take control of my body again, I’ve had to. It’s a necessity. However, the  truth would be that I’m afraid of them and the news they could bring.

I shouldn’t be. I’ve received such amazing care from all the doctors and nurses that have helped me on my path to getting better; my path to a better me.

From the neurologist who saw me first in the emergency room, to the home visit nurse that showed me how to inject myself with the Copaxone; from the nurse that helped me during my spinal tap and kept me talking about my writing so I didn’t have to focus on what was happening.

There was the nurse who did my eye testing, the doctors who have looked over every MRI. Then there is my regular neurologist and my MS nurse. They are gifted at what they do and I’m better in part because of them. My friend Rachael has an expression that she uses: everyday angels. Each one of my doctors, neurologists and nurses has been an everyday angel.

That doesn’t stop me from dreading my appointments, however. I normally get ramped up emotionally with just one appointment to look forward to. With three appointments this month, my emotions have been hypersensitive.

I know that stress is a horrible thing for MS, that it can bring on symptoms if it continues for a long period, but I always assume that the news will be bad, that my world will all of a sudden change again and I’ll have no control over it.

That kind of thinking puts me into overdrive. My fatigue sets in, my brain fog takes shape, growing like a mushroom cloud in my head. My speech problems show themselves, hurling out of my mouth, each word is like a stone. My temper flares a lot more easily, ready to ignite at the merest provocation.  I know that my symptoms exist whether or not I’m stressing out about things, but it does make it worse.

After the positive appointment with my neurologist earlier this month, I decided to try something a little differently. I tried as much as possible not to stress about my appointments. I wasn’t always successful, but it was a marked turn in my behaviour.

I was able to approach the testing at the urology clinic with an almost Zen like state. Whatever will be will be, was my thought. I remained calm during the whole process which turned out to be in my favour as they got more accurate results.

So when I attended the results appointment today, I said to myself again: whatever will be, will be. Did I have trouble sleeping last night? Yes. Was I out of it a little for the morning? Yes, I’d be lying if I said I wasn’t.

However, I was prepared for whatever the urologist had to tell me, whatever my results would be. I mean, this is my life right? I have a choice: I can ignore the help that the everyday angels are giving me, or I can accept it.

I’ve been going about things the wrong way.

I’ve been focusing so much on my spiritual self and my physical self, convinced that I can do everything on my own. The truth is, that I need help along the way, wherever my path takes me. The everyday angels aren’t there to inspire fear, stress, etc. in me. They’re there to help me.

I just have to be open to accepting their help.

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Sometimes, All You Can Do Is Laugh

Two steps at a Time coverI have three medical appointments this month. I’ve managed to get through two of them.

The first was my bi-annual visit with my neurologist. I wasn’t really looking forward to seeing him after the last emotional roller coaster. However, it turned out to go really well. I was able to push forward and pull backward with strength.

Miracle of miracles, I was actually able to walk three steps heel to toe. I know this might not seem like a big deal, but when I was first hit with the MS, I wasn’t even able to do one, let alone balance.

Now I’m able to stand on one foot for up to thirty seconds and I walked heel to toe. This is thanks to the care I’ve taken with my body in terms of eating better and the exercise regime that I was given by Sarah Zahab from Continuum Fitness.

At the end of the appointment, my neurologist told me that I was stronger than the baseline that had been established on my first appointment with him. That was great news. I felt stronger and more able to go forward and confront what came next.

What came next was the appointment I had this morning with the urologist clinic. I wasn’t looking forward to this. I had been told that the appointment would involve a catheter.

I was finally referred to the urologist due to my bladder problems. I always feel like I need to urinate, sometimes getting up every hour or every two hours at night. I can’t remember what it’s like to have a full nights sleep.

Often, it feels as if I have to go, there is a build up of pressure, but nothing comes out. Sometimes at night, I urinate and then wait, because I know that I’ll have to do so again. I was both dreading and looking forward to this appointment. Dreading it because of the catheter, looking forward to it because it would hopefully mean a solution and perhaps a full nights sleep. It should be noted that not everyone with MS has bladder issues, but most of us do. I have CP and MS, each of which have their own bladder issues.

I went in my nurse told me to change into two hospital gowns, one to the front and one to the back. It didn’t occur to me that I would essentially be naked in front of her, but I suppose it should have. Then she explained what was going to happen. This will get a little graphic, but I’ll be brief.

She explained that it would be a fairly invasive procedure but I would not be sedated as she needed me alert enough to talk to her through out the procedure. There would be two catheters placed in the urethra of my penis: one to measure the pressure and state of my bladder during urination and the other to insert a saline solution into my bladder to see how much it could hold.

She assured it that it was possible to urinate around both catheter’s, that I would have to and if I felt like I had to urinate, to go ahead and do it. Oddly enough, I was more embarrassed by the idea of peeing in front of someone than I was with the whole procedure.

A third catheter would be placed in my anus. At the end, a small balloon would inflate to keep it in the anus but to apply pressure to my bladder. Apparently, this helped them get a better reading.

I told her I wouldn’t have a problem with anything going in my anus, that this wouldn’t be an issue. It seemed an inappropriate comment to make, but I smiled anyway. Smiling made me feel lighter about the whole ordeal.

Then we began. The pumps began their work and the measurements were taken. I had to urinate three times during the procedure. I was on a chair that had a hole like a toilet with a cone that caught everything and stowed it away for safe disposal. She told me that if I did have to urinate to just go ahead and do so, not to hold it back. At first, I was hesitant to pee in front of a stranger, but the need to urinate was stronger than my hesitation.

Though out the whole procedure, she kept up a steady conversation and kept me at ease and relaxed. We talked about my writing (she was going to look at my web site), what cologne I was wearing (burburey weekend) and complimented me on it as most men’s colognes are really strong. She asked me what other symptoms I had been dealing with and how it was living with both Cerebral Palsy and Multiple Sclerosis.

She kept up a steady stream (hahaha) of conversation all though out. You know how some people are meant to be nurses or doctors and others aren’t? Well she was one that was very suited to her job. You could tell that, no matter how gross it was, she enjoyed being able to help people. She was an Every Day Angel and I’m immensely thankful to her.

When everything was done and she had taken all the data she needed, she began to remove the tape from my penis keeping the catheter’s in place and then removed the catheters themselves. Then she removed the catheter from my anus. It slid out with no problems. She said “That one came out with no problems!”

I sat there naked from the waist down having peed in front of a stranger, two catheters removed from my penis and one from my anus and…I just laughed. I let out several hiccups of giggles followed by a few minutes of healthy, cleansing laughter. Sometimes, all you can do is laugh.

Because it you can’t laugh about it, what else is there to do?

Now I wait. I find out what the results will be on the 18th, whether I’ll receive medication or I’ll have to use a personal catheter. Either will be fine, though I know which one I’ll prefer.

In the meantime, I’ll keep on laughing and finding joy in the small things.

Posted in bladder, Bladder problems, Urologist | Leave a comment

Happy Birthday Max Shadow

Two steps at a Time coverTomorrow, on August 21st 2014, I will have had Multiple Sclerosis for one year.

Of course, there’s some wiggle room in that. According to the doctors, I should have been diagnosed four years ago. My Cerebral Palsy helped to mask a lot of the issues I was having. I just thought all the problems I was having were down to the CP.

I got sick last year on New Years Eve, 2013. I had no idea what was wrong with me. I honestly thought I’d had a stroke of some kind. After a month being essentially bed ridden, I got better enough to return to work. Then things got a little rough again: I lost the ability to talk, the capacity to write and partially lost my sight.

I finally went to the hospital and was booked in for a battery of tests. After months of not knowing, I was finally told in April of last year that I had Multiple Sclerosis. I had to have a few more tests done to find out what kind of MS I had.

I was told on August 21st, the day before my birthday. The diagnosis was official and they would get me on my MS medication. At the time, people kept saying “What a horrible birthday present!” I always corrected them

It was one of the greatest presents I’ve ever received in a way. After months of being sick, of not being able to walk, of having to relearn how to walk, speak, eat, type; after months of depression, of being lost within myself, of not knowing who I was anymore, it finally had a name. It was something I could fight then.

I was diagnosed with Relapse and Remitting Multiple Sclerosis. From the pre-diagnosis and April, I had started calling my MS by the name of Max Shadow. I had named my CP Cybil Paulsen. It only seemed fitting that the MS had a name, too.

The past year has been wild, strange, bizarre. However, it was also a year of learning, of happiness mixed in with the shadows. It’s been a year of learning who I really am and what I’m really capable of.

I started by standing up for myself, by declaring that I wasn’t broken. I let go of a huge weight that was holding me down (in the form of someone who was supposed to care for me). When I was freed of that weight, I was finally able to work on making myself better.

I took Tarot classes and used the cards for personal growth. I took Reiki (got my level 2!), started writing again. Published my first book of poetry, did my first MS walk (I did all 3KM’s in under an hour!).

Max has taught me to find joy in the small things, to be thankful for kindness and to be more kind to others. To be more patient with myself and with other people. He’s taught me to change the way I think, that if there is an obstacle, there are always ways around it. That though the mountain seems very high, I can climb it and, if I can’t, I can always go around it.

My whole life has changed. I’ve taken on a workout routine, quit smoking and doing recreational drugs. I’ve started eating better and have learned how to take care of myself and how to listen to my body when it gives me warning signals.

That’s not to say that it’s been all great with Max. He’s taken away my speech, made it difficult to walk at times and balance is still a problem. He’s taken away my ability to drink beer, most dairy foods and my memory is shot. I look at my backlist of books I’ve written and can’t remember most of the stories. When I was putting together Talking to the Sky last year, I didn’t remember writing most of the poems. I used to remember the plot of every book I’ve ever read, was able to quote movies by heart. Now I’m lucky if I remember the last book I read after it’s done.

However, that’s okay. It’s okay because I made a choice last June. I decided to live. I no longer wanted to hide myself away. We only have one life (unless reincarnation actually exists that is) and I decided to make the best of the life I had. I decided to fight with every fibre of my being and I have fought.

I’ve learned that I’m so much stronger than I thought I was. I don’t recognize the person I was before last year. I know he was me, but I feel that the MS has given me a gift. I never take anything for granted. I am always thankful for everything I am blessed with and I am capable  of more than I thought.

Way back in May of 2013, I crawled out of my hole and found my way out of the forest and into the light. Now, a year later, I am still bathing in that light, I am whole and I am happy. I love myself, which was something I would have never said pre-MS.

A year later, I am living the life I always wanted and that was always there within my reach. I just had to be given a push to find it. So while Max and I have not always seen eye to eye on a lot of things, I’m doing the one thing that I said I would do last year:

I’m living and that’s enough. 

Happy Birthday Max. You may be a bit of a bastard, but here’s to year one. Let’s make it to year 70, okay?

Posted in Depression, diet, Doctors, joy, self esteem, Speech, The MS Walk | 1 Comment

Deadly Deserts, Dark Forests and the Ogre

Two steps at a Time coverYesterday started out well.

I was upbeat for the whole day and was all set for a busy evening of chores: groceries, laundry, dishes and writing. That didn’t happen.

When I left the office, I began to make my way towards the grocery store. Part way there, I was hit with a sudden, crushing fatigue. There was no build up, no warning. One moment I was fine. The next, it was as if I had walked through a cloud and all I wanted to do was sleep.

There has been a lot of studies about MS and weather, how the cold and the heat can cause symptoms or worsen the condition of the body. How people with MS react more strongly than others. Heat is especially difficult to endure.

I also tend to react after the fact. I can be busy and often I think I’m going to have a fatigue episode but I don’t. Only after several days in a row will I react. Last week was a very busy week for me and true to form, I reacted after everything had already happened.

I managed to get my groceries in the cart and get to the cash. When the checkout clerk asked me how I was doing, I could only nod. He looked at me with concern. “Are you okay?” He asked. I wore the fatigue like a shroud.

I nodded and went home, each step reminding me of when Nancy runs up the staircase in the first Nightmare on Elm Street. It was as if I was stepping into a gelatinous mess and had to pull my feet out again with each step.

I got into the apartment and just sat, my groceries still in their cart. I sat and my cat, Tula, immediately came to sit on my lap to offer me comfort. There was a storm cloud above my head and I knew I had to let it go. However, I wanted to distract myself from the niggling depression, so I got my clothes together to do laundry.

Not the most sensible thing to do, but I’m really good at being stubborn.

When I went down to the laundry room, it was to find every washer and dryer full. Not a one was available. I stood there, holding a heavy laundry basket that had taken me everything I had to put together and bring down and now I had to bring it all back up. As I came up in the elevator, I could feel the anger mounting. A combination of fatigue and rage.

I managed to hold it together until I got into my apartment. Then I just lost it. I threw my laundry basket across the room. I gathered up the laundry, repeating the same thing over and over: “All I wanted to do was a load of laundry, all I wanted to do was a load of laundry, all I wanted to do was a load of laundry.” I knew I was losing it, that my temper was out of control. I could even see myself as if from a distance and wondered what someone who saw me in that moment would think.

It didn’t matter. Stuffing the clothes in the laundry hamper, I began to throw other things: the basket cover, the clothes, a basket that Tula sits in that just happened to have the audacity to get in my way. I threw anything I could find, but had the foresight to not throw anything breakable. I nearly upset my dresser, and stopped when I would have turned it over.

I was in a rage over nothing. It’s not the first time this has happened. I’ve lost my temper over the bed sheets, the organization of my books, Tupperware, the state of my wardrobe, etc.

Eventually, after I was able to calm down, I started to put the groceries away. Tula meowed at me in a worried sort of way. I stopped and picked her up, standing in the middle of my apartment, clothing and objects, my dresser half in and out of the closet

Holding her, I began to cry. It was a two-fold crying: one part, letting go, one part anger at myself, anger at the situation I found myself in.

I’ve always had a bit of a temper, simmering below the surface. I’ve been told it’s a Leo trait and that I’ve always had a temper, but it’s never been this bad. It’s never been this all-consuming, where I can do nothing to stop it. It erupts over the smallest things now: not being able to get my shoes on, the line ups in stores, a build-up of useless drama or, in this case, not being able to do laundry.

I’ve been trying to educate myself as much as possible with regard to MS and along with the fatigue, bladder issues, memory problems, brain fog, body pain, etc., there’s also temper. There have been reports from people that it’s changed their husband/wife/significant other into somebody completely different.

The experts aren’t sure what causes this, but I have my theories. We carry lesions in our brains that cause the MS. When I was first hit with it in January of last year, it affected my hearing, my balance, my sight, my ability to eat, being able to walk, my speech. What’s to say that it can’t affect someone’s mood?

I frighten myself when I’m like this. In those moments, when I lose control of myself, I cease to know who I am. However, as quickly as they come, they go away. When all was said and done last night, my body was tired, fatigued and sore. The temper that comes is like a storm that rages through and causes havoc and leaves just as quickly.

I did half an hour of meditation, followed by a workout to ease the pain in my body. Then I relaxed with a cup of tea. I do these things to ground myself, to remind myself that I am here, I am alive, I am whole, no matter what has happened.

I slip into depressions just as quickly but, thankfully, I am able to find my way out again. This wasn’t always the case. With the recent death of Robin Williams, I am more than ever reminded of the perils of depression.

People with or without an illness deal with depression. You don’t have to have Multiple Sclerosis or Cerebral Palsy to be depressed. Last year was a tough year for me. After the pre-diagnosis, I thought I was doing well, I thought I was coping. I wasn’t.

I had withdrawn from everyone I know, everything I loved. Even though I had family that loved me, I felt alone in the world. I was put onto Backlofin to ease the spasms. I’ve written about this before, but I remember it like it was yesterday. I had gone into work and was sitting outside having a cigarette (thankfully, I’ve quit smoking since then). I held the bottle of pills in my hand and had a bottle of water beside me.

At the time, the forest around me was so large and so very dark. I could not see through the trees and no light came through the leaves. The dirt was filled with pieces of glass, stones that would break my fall. I sat there, at work physically but in the forest mentally, and held my bottle of pills.

I had been thinking of how easy it would be to take them all and take a swig of water and feel them all sliding down my throat. It had been weeks since I’d seen a friend. All I did when I went home was watch television until it was time to go to sleep.

I called my boyfriend at the time (now an ex thank god) and told him that I wanted to end it, that I wanted to slip into darkness. He told me to do it.

I asked him if he understood what I had just said. He said he did and I should stop bitching and just do it, the world would be happier without me as I was now. So I told him to fuck off and did what I should have done and called my mother.

Thankfully, she was the light in the middle of the forest that I needed. I got through my depression through sheer stubbornness and because of her. I am alive today because of her.

I made several decisions that day and one of them was to live, despite what I thought of as a shit life at the time. I did things to put myself on the right path: meditation, Reiki, a change in diet. I quit smoking, started working on trying to walk without my cane. I pulled myself out of the dark forest and back into the light.

I also have amazing friends. There were a few people that I reached out to after everything happened that wanted nothing to do with me. Their loss, as I’m so much better than I was. I was lucky, I pulled myself out. The fact is, though, that the forest is still there, waving its leaves seductively.

I do everything I can to ignore it and, for the most part, I succeed. Last night was difficult, however. I sat there after my meditation and exercise, exhausted mentally, physically but thankfully strong in spirit. I could hear trees being brushed by the wind inside my apartment. I did take a walk to the edge of the forest.

My mother once said to me: If you’re angry, be angry. If you’re sad, be sad. But don’t let it consume you. Let it out, but don’t drink it in.

So last night, I stood there at the edge of the forest and touched a tree limb, lamenting what had happened. How stupid I’d been to lose my temper over nothing, how I should have listened to my body, what I should have done. Then I reminded myself how far I’d come, how much I’d done, how I’ve overcome and conquered. So I recognized that forest, I know it well. But I don’t have to live within it. I will not let it consume me. That tomorrow was another day to try again.

I’ve realized that, to some extent, everyone carries a dark forest, a jagged cliff or a desert within them. The landscape may be different, but the effect is the same. I sat there last night, drinking my tea and just remembered to breathe. It doesn’t matter that I lost my temper or that the MS makes me tired or frequently exhausted or brain dead. What matters is that I go on living, that I don’t give in, that I remember how much I have to be thankful for despite everything that could hold me back.

I just have to remember: tomorrow is another day and anything is possible.

 

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A Magnet of Hope

Two steps at a Time coverI wrote this for the Reboot Your Life anthology for Chicken Soup for the Soul.

They didn’t select it, but that means that I can now share it with all of you. I’ve been sitting on it since January!

Enjoy!

 

I was  lost inside of myself. I didn’t know who I was anymore.

I had recently been diagnosed with Multiple Sclerosis after months of trying to figure out what was wrong with me. For months I had been unwell, but it was a magnet that my mother had given me that brought me back to myself.

In January, I was misdiagnosed with Labyrinthitis. I had fallen down the back steps of my apartment building the week before. The fall was jarring and I was bruised. The doctor thought the Labyrinthitis was caused by this; its a fracture that affects the inner ear. It can be caused by head trauma. It causes dizziness, vertigo, nausea. He was wrong, though. It was much more than that.

I just woke up with it. I went to sleep on December 31st 2012 and I was fine, I woke up on January 1st 2013 and it was as if I was in someone else’s body. I could barely stand and the whole world was spinning around me. After sleeping again for a few hours, I woke and I was still the same. I knew that something was wrong.

I got myself to the doctors and could barely hear him when he told  me that it would last anywhere from two to four weeks. Then the Labyrinthitis would go away on it’s own.

I couldn’t go to work and I wasn’t able to watch television or read. I couldn’t write and there were days I could barely walk or stand. Other days where I could hardly see. I listened to audio books when I wasn’t asleep. I was essentially bed ridden.

Somehow, I pulled myself up. I got better enough to go back to work, to get back in the world. It had been three weeks.  Three weeks of being barely able to walk, of sleeping all the time, of not being able to do simple things. Three weeks of being lost in my own body.

When I went back out into the world, I did so with the aid of a cane. The left my face was frozen, even my taste buds and I was deaf in my left ear. I thought I’d had a stroke and just didn’t know it. I fought and willed myself to get better; or better than I was. It wasn’t an easy process.

When I stated getting better, I tried to prove that I was okay, that I was fine-but I knew I wasn’t the same person, I wasn’t the same anymore. My face unfroze little by little and I waited for the four weeks to be up, for this temporary sentence to be over. Then four weeks stretched into five weeks, then two months.

I wasn’t any better though. Now it had been almost three months. Each day was a struggle, Then I lost the ability to write. I’ve written all my life and that was taking away my hands. Then I lost the ability to speak properly. I could hear the words in my head, but I could only say three of five of them to get my point across.

That’s when my mother stepped in. I left work and went to the emergency room. She stayed with me for the whole six hour stay. I was seen by a neurologist and booked for a battery of tests. It was April when I found out what had been wrong with me all year.

When the doctors told me I had Multiple Sclerosis, I thought: Thank goodness, it has a name; now I knew what it was and I thought I was okay with everything at first. I was holding up-but eventually, I got too  lost in thoughts of: what would happens now? What is my life going to be like from now on?

By the beginning of May, I’d withdrawn from everything and everyone I knew. I went to work, but I couldn’t do what I used to be perfectly capable of doing every day. I came home to my cat and held her while I went further and deeper into myself. I was consumed by what my life had become. My mother would call it brooding-apparently I’ve been a champion brooder ever since I was a small child. It wasn’t brooding, though. I was lost. I thought long and hard about taking my own life.

In June, I was making a passable attempt at cleaning when I saw it. A few years ago, my mother had given me a magnet. It was a small circular piece of glass and someone had put a saying inside of it. It had a bright yellow background and six simple words: my life is up to me.

Just six simple words and they were like an epiphany. It seemed so simple: I could sit and wallow and wonder what my life would be like now, or I could get busy living it. I could bemoan the fact that I got Multiple Sclerosis or I could accept it and what was to come, no matter what it was.

I knew that’s what had to be done and that I was strong enough to do it. That yellow magnet from my mother was like a beacon in the darkness of the Labyrinth and into the light.

By the time I got my official diagnosis in August, I was ready, come what may. I knew that my life as it was had changed. It would now be a life filled with difficulties and hardships, but it was my life to live.

All I had to do was get out there and live it.

Posted in Depression, The Past | Leave a comment

What I Meant To Say and What Came Out Instead

Two steps at a Time cover I am often reminded that my body is not my own.

This morning, I went out and about. I got myself breakfast. I had difficulty ordering. What I meant to say was “I’ll have the classic breakfast please.”

What came out instead as “I’ll have eggs and eggs please.”

Hmmm, I thought. That’s not quite right. I had to enunciate slowly what I wanted and the waitress still didn’t understand me.

I tried again: “I’ll have the classic breakfast please.”

What came out instead was “I don’t want cheese with my breakfast.”

I blushed as she looked at my with something akin to pity. Finally, I resorted to pointing to the menu. I was able to get the words “Scrambled, bacon, rye” out with no problems however.

Afterwards, I went to the drug store to get some things I needed.

I had $30 of points saved up, so gathered up $30 of purchases happy that I would be getting them for free. When I got to the cash however, she told me I had $25 before taxes.

What I mean to say was “Can’t I use only $20 of them?”

What came out instead was: “The points aren’t used automatically?”

She shook her head not understanding my question. I tried again: “My points, they are used at the same time?”

She looked at me as if I were mentally deficient. She spoke slowly to me asking: “Do you want me to use some of the points?”

I nodded, saving only $5 instead of the $30 I was supposed to save.

I’ve been having a few problems with speech as of late. The words aren’t coming out fast enough leaving pauses in the conversation or they come out all wrong, not at all what I meant them to be. There have been a few conversations with friends, family and co-workers where the words aren’t there when they’re supposed to be.

I’m currently reading The Fault in our Stars and came across a line that hit home for me. Hazel is talking about how she looks sick, whereas Augustus doesn’t appear ill. She says: “The physical evidence of disease separates you from other people.”

I couldn’t agree more. For most of last year, I walked with a cane. I couldn’t get over how nice people were being, how kind they were. I would occasionally catch people looking, though, their eyes full of pity. I can’t express what a relief it was to walk without the cane and be treated rudely like a normal person.

Now, without the cane, some of my symptoms startle people. They look at me, take me in, and I appear to be all right and I am. Then the speech problem start or the balance issues and they’re caught off guard. They aren’t sure what to do or how to respond. The truth is, neither am I some days.

Thankfully, the speech problems will go away eventually, replaced by something else. But here’s the thing: I may be having speech problems, but I haven’t lost my voice. As long as I can type, my words as I mean to say them aren’t lost to me.

And that’s pretty freaking awesome.

Posted in Speech, Talking | Leave a comment

Symptom Phobia

Two steps at a Time coverI have to remind myself that not everything is a symptom.

Last night, I went to bed at 9:30pm like I always do. Usually, thanks to the pills I’m on, I fall asleep rather easily. I may have to get up several times during the night but falling back to sleep is usually not an issue. I’ve never had insomnia before.

However, last night, I was awake until 1am. The last time I looked at the clock, it was 12:57am. Instead of reading a book until sleep claimed me, I went online and did something I normally don’t do.

I Googled symptoms of Multiple Sclerosis.

I’m still coming to terms with my new body and have been trying to learn everything I can. I’ve changed my diet drastically, have taken on an exercise program; I’ve started living the healthy life I should have years ago.

However, because I’m still coming to terms with what my body is like, I try to read everything I can. I have MS For Dummies on my Kindle and I’m constantly referring to it. I do realise, however belatedly, that googling symptoms at 11 o’clock at night is not the same thing.

The list of symptoms with MS is wide ranging. Here’s a list of them borrowed from the MS Society:

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

I’ve suffered from, or am suffering with, almost all of them on the list. However, one that’s not listed is the potential to develop insomnia. I was convinced that my lack of ability to sleep was the development of another symptom.

I read this last night online and in MS for Dummies. It should also be noted that insomnia is a indication of depression and I’m not depressed now. That was last year. One night of insomnia does not a symptom make.

I’ve been so conscious of the potential of developing other symptoms that I’m seeing them around every corner, in every spasm or speech problem. I’m so afraid of developing more that I convince myself that I’ve developed something new and am on my way to a possible relapse.

What I have to remember is this: every day is a gift, filled with many joys. Even the smallest thing is a joy. The symptoms I do have, while inconvenient, do not stop me from living. Only I can do that.

I’ve only been diagnosed with MS for a short time. It hit hard in January, but the actual diagnosis only came on August 21st 2013, the day before my birthday. Though it feels like a lifetime ago, a different “me” ago,  it hasn’t even been a year. When I started to get better, in May of last year, I made a choice. I could hole up and hide, or I could live. I chose to live.

I’m still learning about myself and my new body. I’m still learning about the disease I carry with me. I’m still learning.

I need to stop focusing on what might happen. New symptoms will come and go, that’s the nature of Relapse and Remitting. I need to stop looking for the boogeyman around each corner of my brain and focus on living my life the only way I know how:

Two steps at a time.

Posted in Insomnia, Symptoms | Leave a comment