Two Steps at a Time

This morning while making my way to work, I had trouble walking.

I had started off the day fine with my regular morning spasms. My legs were like rock, the muscles refusing to relax.

As I made my way to work, I noticed that my body wanted to go backwards. By the time I got to where I transfer busses, it was a struggle to walk.

My body kept wanting to tip backwards, to walk with my back parallel to the ground. I struggled with every step and kept trying to right myself as I walked.

I kept shuffling forward, two steps at a time. As I was struggling not to walk backwards and keep myself upright, a woman came towards me.

“Are you all right?”

“Oh, I’m fine.” I said. “Just going for my bus.”

“I’ll go with you.”

“You don’t have to, really. I’ll be okay.”

“You’re obviously having trouble. Let me wait with you for your bus and make sure you get on it safely.”

Nothing I said would dissuade the woman from waiting with me. While we waited, we talked of the coming winter, how dark it was out today and light things. She didn’t once look at me with pity or ask what was wrong with me. She was just a woman helping out a fellow human being.

When the bus came, she helped me get aboard. When I looked out at her, she waved at me, a large smile on her face.

That smile has followed me throughout the day and I will take it home with me. Thank you, whoever you were. Thank you.

Over the past few days, new symptoms are showing themselves.

The tremors have begun. It’s only been happening during the simple things: adjusting my glasses, checking my blackberry.  I go to press a button and my finger slips; I go to adjust my glasses and my hand can’t quite grasp them. Zippers and buttons have become a chore for me and it takes me twice as long as it use to do up my coat.

Typing is also becoming a challenge. I can’t write by hand anymore so I type everything out. Often while I’m typing my fingers will hit the wrong keys, no matter how many times I type the word. I’ll usually resort to one finger typing to make sure I hit the right key.

I’ve also been having trouble with keys. It takes me forever to get a key into a lock. It doesn’t matter what kind of key or lock it is, this doesn’t discriminate. Every time I go to put a key into a lock, it won’t go in. I always drop the key. Eventually I’m able to guide it in, but it takes a while.

However, I look at it this way: they are all simple things, ordinary things I didn’t think twice about doing before. Now they have become small mountains to climb throughout the day-but here’s the thing: each simple thing I’m able to do is a small victory.

I never thought I would let out a breath of relief every time I did up my coat or put a key in a lock, but I do. More than that, I’m not letting the MS win. Oh, it’s won on quite a few other things, but not with the simple things.

Each simple thing that I’m able to accomplish is a small victory and I celebrate each one.

I have been experiencing a lot of fatigue lately.

Just in general, I’ve been very tired. I sleep for seven to eight hours a night and get plenty of rest-but the body fog comes without warning. This week has been particularly difficult with what life had been bringing to my doorstep, so I haven’t been sleeping well. Yes, I get my full nights sleep, but its not restive sleep.

This Saturday, I was attending an MS info session with the MS Society of Ottawa. They had dimmed the lights so we could watch a movie about Multiple Sclerosis. I had trouble keeping my eyes open. Not because of the subject matter of the film (which was fascinating) but because I just wanted to sleep so badly all of a sudden. It went away, but its pull was strong.

Later, I had difficulty focusing at dinner, the fog was so tempting. It wasn’t a body fog this time, but a brain one. I met so many lovely people at the MS 101 gathering and I could remember none of their names. My mother told me the name of one girl from the meeting numerous times, and I could still not remember it.

I do remember one name only because she friended me on Facebook and I can look it up. However, I don’t remember her mothers name, even though she was totally awesome.

Today, while out again with my parents, the body fog came back. I was falling asleep in the car and just let it lull me, the fog pulling at me with its fingers of smoke. I was slow all day and walking was difficult. I was wobbly and unsteady on my feet.

I went grocery shopping and ended up having to carry four bags home in both of my hands. I just walked slowly, one step, two steps at a time. Coming into my apartment, I fell on the front stairs. I was able to prevent myself from having a serious fall, but the after effects were jarring, both from carrying the groceries and the half fall.

Now I am doing what I should have done earlier today: I am resting. I am sitting still. The pull of the fog is still there, the brain fog and body fog still strong. Eventually, well before my normal bedtime, I will give in to sleep.

I cringed when I heard the alarm and the announcement to vacated the building. Someone told me that it would be all right, that fires in office buildings or fire drills were fairly common. It wasn’t the possibility of fire that worried me.

It was the stairs.

We were eight floors up. I knew that I would have to go down them. Entering the stairwell, I looked down at the curving stairs, worming their way to the bottom. I was terrified. I have no balance on the stairs, fall going up them or down them quite often.

It would take all my concentration to not fall. I was worried that I would fall into or on someone. Thankfully my co-workers had my back. One took the stairs in front of me, one on the side and one behind me.

All I had to do was concentrate on the stairs, on climbing down the mountain. I held on to the railing for dear life and was very careful, almost exaggeratedly so, with each step. I started my counting at the top and kept starting over when I got to another floor:

8

One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

7

 One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

6

One, two, three, four, five, six, seven, eight, nine, ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen, seventeen, eighteen, nineteen, twenty.

And so on.

Eighty five steps. There were eighty five steps. Each one felt like I was trusting myself to the fates, to the unknown. Anything could happen but it didn’t. I made it down okay, I survived the climb down the mountain.

Now it is afterwards and I am paying for the climb down. My legs feel as if they are hardened jelly that has been set afire. As I sit here typing this, I can feel parts of my legs spasming and burning. The muscles are hard yet feel like they are made of liquid.

What energy reserves I had built up are gone. Apparently I look pale and unwell. But I feel victorious. I didn’t fall down the steps. I did not fall down and I kept walking.

And I will keep walking, two steps at a time…

I surprised myself today.

I had to run errands. I went to the bus stop and the bus was just driving away. The sign said it would be another thirty six minutes until the next bus. I didn’t want to wait that long and so made a snap decision. I decided to walk.

I had to go to the post office and get a parcel. It was a few blocks away, about a fifteen minute walk when I was walking at my normal speed. I knew walking this time would take longer but I thought I could do it.

I merely put one foot in front of the other and sang a little bit to myself:

One step, two steps, three steps four…

It took a long time, half an hour or more. However, I made it all the way there and didn’t trip or fall once. I was so encouraged by my success that I decided to walk back too. I stumbled a bit going back but didn’t fall.

I decided to see what else I could do. My body was co-operating with me so why not use that to my advantage? I did the groceries and even took out the garbage and recycling, carrying them up a flight of stairs.

I was even able to lift the garbage can up to put the garbage in the dumpster. Then I walked down that stairs and wondered what my body was going to do. I’ve waited most of the day and nothing has happened.

I’ll more than likely pay for the work out tomorrow. Though I wasn’t moving as quickly or as well as I used to, I was able to do what I set my mind to. I surprised myself today, or rather, my body surprised.

Some would think it odd to look at what happened today as nothing out of the ordinary, nothing to get worked up over but it has been a completely pain free day where I was 90% in control of my body and I was able to get around like I used to. Even though I had my cane, I felt like a part of my old self had come back.

Even if it was just for a day, it was the greatest of gifts.

For that, I am thankful.

During the night, I was woken up repeatedly. Max and Cybil were arguing again.

My thighs spasmed, and my legs were filled with pebbles and they were being rushed around my body by water. Then my calf muscles started twitching and hardening. My back and shoulders got in on the action. It was  as if my body were a symphony and it was singing to me.

When I woke this morning, I could barely walk. I shuffled around this morning, doing my old counting trick, seeing how far I could get.

One, two, three, four, five, six, seven, eight.

In the shower, I was up one moment and then I was down. I didn’t slip so much as the tub rushed up to meet me. I remember reaching for the soap and then I was down on my knees, water rushing over my head.

I pulled myself out of the shower and got ready to face the day. Moving hurt, dressing hurt, but I pushed through it, the pain but a barrier that I could move across.

On the bus, I lost my balance and ended up falling into an older man. He was very nice and didn’t seem to mind getting to know me close up. He helped me to my seat and asked if I was all right. I was touched by his kindness when I expected him to tell me off.

During the day, I was careful as I moved around the office and didn’t have a mishap. No, that happened on the bus ride home.

I shuffled on to the bus and all the seats were full. A man old enough to be my grandfather offered me his seat just as the bus began to move. I lost my balance completely and a woman who was standing caught me before I fell. Another young woman gave me her seat so the older gentleman could remain seated.

Like the older man this morning, the woman made sure I was seated. When she knew I was okay, she let go of me. When I arrived at my stop, she helped me to stand and helped me off the bus.

I looked at her and tried to show my gratitude in two simple words: “Thank you.”

She waved my thanks away. “What would the world be like if we didn’t look after each other?”

Going home from the bus stop, I felt lighter. I had received help from two ordinary, everyday angels. I only hope they know how thankful I am.

When I was getting off the bus after work today, I ran into someone I know but haven’t seen in a while. He asked me how I was doing.

“I’m okay.” I said.

He gave my cane a long look. “Really?”

“Yes. I’m doing great actually.”

“I’ve seen you around, walking with that.”

“It’s for the MS.”

“Oh, I know.”

“How do you know?”

“My mother had MS. She would shuffle and her body would bend as she walked, like she was trying to fall backwards. Then she would sit and be able to get up again. She died with it.”

“Well, it doesn’t go away.”

“Oh, I know. But don’t let it limit your quality of life.”

“I’m trying not to. I get out and around every day, still go to work.”

“I know. You’re like my mother. She was stubborn as an ox too. She lived till she was ninety-three.”

“Thanks.”

“I meant that as a compliment. You’re walking around, you’re getting out, you aren’t hiding away in your apartment. That’s what you need to do. You need to get out there and live and you’re doing that.”

“Thank you.” I was touched.

“Don’t give up, don’t ever surrender. Life is worth living as long as you want to live it.”

He hugged me and then got on his bus. As I watched the bus drive away, I thought about my quality of life.

And decided that it was pretty awesome.

Someone recently told me that acceptance was a choice.

I had never actually thought of it that way. I was born with the Cerebral Palsy and didn’t have a choice. With the Multiple Sclerosis, it just happened and there was nothing I could do about it.

I was angry for a large portion of this year. My body was unknown to me, it had become a foreign entity. When I started going through my tests first to determine whether or not I had MS (I did) and then to find out which kind of MS I had (relapse and remitting) I kept hoping that I would be able to start my medication soon so I could get back to normal.

My MS nurse told me about the injections I would have to take. She also told me that it was not a cure, that the injections would slow down the MS but not take it away. I hardly listened, so focused was I on the injections making me better.  I was convinced they would.

In the meantime, I grew angrier and more withdrawn. As I started the injections, I prayed for a miracle, for my life to go back to what it was before. I hated my cane, I hated the injections, the pills. I was still experiencing balance issues, still falling. I began to hate myself.

This summer, there was a person that was playing music on the sidewalk down the street from me. We connected, in the way that strangers do. He pointed to his walker. “I walk with assistance too.”

We talked for a while and I told him how angry I was, that I raged inside. He shook his head. “You have to welcome it, man. This is your life now. You’ll never be off the medications and you really have to learn to love your cane. You have to learn to love yourself again.”

It took a few days for his message to sink in. I could still love myself even though I carried MS and CP inside of me. I wasn’t helpless, I wasn’t nothing, I wasn’t a broken man. I wanted to get on with living and not wallow. I still had a lot of life left to live.

At that moment, even though I didn’t know it at the time, I was accepting myself. I was accepting the situation and started to look at my cane and my medications as tools for a better life rather than a hindrance.

I accepted my situation which in turn made it easier to love myself again. I thought of it as deciding to live rather than wallow, but it was about accepting the things we cannot change and learning that life didn’t have to end.

It was only another beginning.