By Angela March 8, 2011
This is a long one . . .sit tight.
In order to be ready for the Rehabilitation hospital I needed to learn and re-learn how to do several day to day activities. These activities included but were not limited to: transferring from the bed to the wheelchair and back, transferring from wheelchair to toilet and back, bathing and getting dressed. I couldn’t move on until I had attained a satisfactory level of understanding and accomplishment of these activities.
It was tough, it was tiring.
I would get frustrated with my body not doing what I wanted it to do. The muscles in my core were weak and it was difficult to sit up for long.
I fell off the toilet several times.
It’s ok to laugh. I did too. Then I got swear-y.
The left side of my body was still very numb and although some feeling had come back in my right arm and hand, this side of my body was very weak. There had been a lot of damage to the nerves on this side of my body. Nerves that are required to receive signals, that are sent through the central nervous system in order to have proper function were no longer receiving those signals.
It was going to be a long road. There would be a lot of cursing.
They had told me to expect about 6-8 weeks in the Rehabilitation hospital.
Are you kidding me?
I wanted to go home. I was dying to go home. Just for a day, an hour, a minute. I just wanted to go home.
No more tubes, IV’s, no more nurses or doctors. Just home.
But I couldn’t go home. I couldn’t walk.
On May 6th, 2010, I was transferred down the road to the Rehabilitation hospital. I had been in the other hospital for 3 weeks, 3 days.
That morning, I was happy, happy for the change of scenery. Happy with the promise of walking again.
By late afternoon, that happiness had changed to fear, anger, rage and then despair.
First I have to say, it is unfathomable how anyone gets better in the hospital system. I mean, I know that’s the point, but how in the world does it ever happen?
The germs from the patients are passed to the care providers then to the patients to the visitors . . . it’s an endless cycle.
Then there is the food. Sorry, I mean, slop.
This garbage cannot be intended for human consumption. It just can’t be.
In the other hospital it had gotten to the point that Steve and my family started to bring me supper. In the Rehabilitation hospital, the food was even worse, and they didn’t fully grasp the concept of ‘vegetarian meal plan’. One day I was brought salmon, then I had to argue with the food services department about why eating fish isn’t part of a vegetarian’s diet and lifestyle and then I had to accommodate, I mean educate, her by saying that although anyone can claim to be a vegetarian, it is those who don’t eat flesh that actually are vegetarians.
Oh, it was bad. My ‘sass-o-meter’ was running on overload.
I eventually gave up and discontinued meal service altogether. There was a kitchen for the patients to store food from home, for obvious reasons, so that’s what we did.
So, I was willing to get passed the germs and the awful food, but what I couldn’t see past was that which glared at me on a daily basis: the filth of this place. It was run down, like paint peeling of the walls run down. There were holes in the walls. There was an inch thick line of filth and crud around the base of the wall where it met up with the floor.
I could see past the fact it was an old building, I could see past and accept the fact the nursing profession in this province is grossly understaffed and underfunded, but to me, the state of this hospital was inexcusable.
And it was going to be my home for the next 6-8 weeks. You’ve got to be kidding me.
So, I adopted a new philosophy. A philosophy loosely based on Darwin’s The Theory of Evolution.
I realized I had 2 choices here. I could either Adapt or Die. I had been through the hard part. I had gone through the emotional roller coaster of whether what I had was cancer or not. I had had surgery on my brain. I had had a spinal tap and plasamaphresis. Surely I could handle a dirty hospital.
Unpacking that afternoon in my new room, equipped with a cranky old lady with some kind of neck injury as a roommate, I came to the conclusion: I could not, would not, handle this.
And then the yelling began.
It was Thursday and Sunday was going to be Mother’s Day. Mother’s Day and I was going to be stuck in here, with this cranky old battle axe. I would be stuck in here without Grace and without a Mother’s Day breakfast in bed without a beautiful card or craft made by Grace to commemorate the occasion. I was going to be in this disgusting, horrible, wretched and forgotten by society excuse for a hospital.
No. No. NO. That was not going to be an option.
I began pleading with Steve. I begged him to get me the hell out there. No. I won’t stay. Take me home. I’ll figure it all out later just get me out of here.
Fine. Fine, I’ll just give up. If I don’t do what they want, they’ll have to discharge me. I’ll just give up.
Weeping, crying, weeping.
Steve said if you want to give up, fine, but I’m not going to watch. And he walked out. He left. He left me crying with this cranky old lady behind the divider curtain.
I composed myself and called Steve. I have no idea what I said, but he came back. He came back and we moved on. I wasn’t going to give up. The cranky old lady called for a doctor, complained about all the yelling.
The next day, I was given a private room.
Adapt or die. Adapt or die. Adapt or die.
On top of all of this, I was the youngest patient on my floor. The average age was in the neighbourhood of 60 years old. Most of the patients were people whose diabetes had gotten out of hand and needed amputations. There was one patient, who ended up in the room next to me, who was in his late 30’s, had two little girls, a wife and lived in the country in his wife’s family’s old farmhouse. In March, the mountains still had snow but the weather was warm and the snow was getting slushy. He was skiing with his girls on the bunny hill, lost his traction in a spot of slush and lost control. On the bunny hill. He broke his back and is now paralyzed from the waist down. The bunny hill. Now his turn of the century farmhouse needs to be fitted with an elevator. He left 2 weeks after I got there. He was happy.
We got through my first weekend in the hospital. We got through Mother’s day. With my parents we went for a coffee and a walk (they walked, I was wheeled by Steve with Grace on my lap) in Public Gardens and had take-out from my favourite restaurant and Grace gave me a plant for my room, a violet, because it’s our favourite color.
It was a good Mother’s Day.
Then it was Monday.
It was the first day of my rehab physiotherapy. I had to be assessed as to what I could and couldn’t do.
I couldn’t do much. I could barely stand on my own unsupported. I couldn’t bend my ankle in any direction. I couldn’t wiggle my toes. It was going to be tough. I was still swimming in the MS fog, not as thick, but it was still there.
Then I asked.
I asked, while dreading the answer.
How long until I can go home?
My therapist, Karla, was kind, caring and empathetic. She smiled and softly said, it’s going to be a while, it’s going to be tough, and right now I can’t say for sure, but if we’re lucky, perhaps 6 weeks.
But if you can do stairs and walk with a cane, you can go home on weekend passes.
I asked how long before I could do that. She asked me how many stairs were in my house. My heart sank.
When I told her how bad it was she said it would be a stretch to be ready for this coming weekend.
She told me that Steve could get a cot and stay with me for the weekend, which was fine because Grace was going to be at my parents.
Adapt or die. Adapt or die. Adapt or die.
I started to feel better and I knew I was feeling better because my outlook started to change and because of this, I developed a list of goals.
First I had to do the stairs so I could go home.
Then I had to get Steve, to somehow get me to the mall to get an outfit for a wedding at the end of the month, to which I was going, rehab or no rehab.
Then, I had to prepare a speech to give for an awards presentation at the graduation ceremony at the college where I teach. I had nominated the student who was winning the award and I was eager to give her the award myself.
The ceremony would take place on June 9th. It was now May 10th.
I had 1 month.
In my usual fashion, I put my head down, and plowed through the first week of rehab.
They told me, in order to walk properly I had to get my ankle to flex up and down. My toes had to flex up and down as well. I still couldn’t move them in any direction. I started to practice in my room. For hours I practiced. I would stare at my feet and legs and tried to will them, begged them, commanded them to move. Sometimes I damned them to hell, for effect. But nothing happened.
The weekend that Steve had spent with me was fun, it felt like we were back in University crammed into my dorm room, only now, I had a wheelchair. He took me to the mall, to buy new sneakers for physio and shoes to wear to the wedding. We also had to buy a new outfit. It was important to me that I be present at this wedding. The couple getting married are our very good friends, the groom has been Steve’s closest friend since they were three years old and by coincidence our jobs relocated all of us at the same time and Steve and Chris ended up being in the same province again after years of being apart.
It was a special day that was not to be missed, especially since Steve was a groomsman.
Only one thing stood in the way.
I wasn’t sure if I’d be walking by then.
If I was, I would have to wear a brace to prevent my ankle from turning over. The brace had to fit in whatever shoes I wore.
Imagine. Me, in supportive shoes.
The dress we bought (the whole ordeal with Steve in the change room with me, getting me into a dress is a post in and of itself)was black and white, a Calvin Kline. The shoes, brown. With laces. Awesome. We were just going to tell everyone that the rule was to only look at me from the knee up.
But, I couldn’t get ahead of myself. I had to get home first. The holiday long weekend was the next weekend, and I was NOT going to spend it in this dump.
Head down I plowed through.
I eventually got stronger and gained more stamina. The weakness in my left arm gradually subsided and got stronger. My left leg was getting stronger and although my ankle and toes still weren’t co-operating, I could walk, albeit like a robot, with the brace and a cane. In the mean time I practiced the stairs built especially for rehab in the gym, then I graduated and I did the ‘big’ stairs. The emergency exit stairs. There was about 20 stairs. All cement. It was a long way to fall if I slipped. I was petrified. I clung to the railing begging god, any god, not to let me fall. I was attached to a safety harness and Karla, all 5’ and 7 months pregnant of her, held on to the other end.
I went for it. It took forever. But I went up, and down. I had survived. I was Queen of the world.
Home. I was going home. For the weekend.
Oh, god. It was an ordeal. It was an ordeal getting up all the stairs. Steve had to spot me from behind in case I took a sudden dive. I had to be spotted walking anywhere of great length, like to the washroom.
But I was home.
I was home, but things had changed. Metal bars were installed in the washroom, a condition of me going home. A bar in the shower, now equipped with a shower seat and a bar by the toilet. I never fell off the toilet at home.
I was home, but I felt awkward, alien-like. In my own home. I was frustrated that I just couldn’t get up and do my own thing. The brace on my foot and ankle was heavy and awkward and I had to wear sneakers with it. I had a cane. I got tired very fast and easily. When I was really tired, really fatigued, the MS fog rolled in. I was in my own house, but I couldn’t own the experience to the utmost. And that worried me. How could I move on, if I couldn’t do this? How could I be a functioning member of this family if I couldn’t do this?
Adapt or die. Adapt or die. Adapt or die.
My hairdresser made a special house call just for me. It had been a while because I was due for an appointment when I ended up in the hospital and now I was desperate.
I felt a lot better when we were done. I felt rejuvenated. I felt ready to tackle rehab, like really tackle it. Like kick some ass tackle it.
The weekend ended up being beautiful and my lilacs had bloomed. For the first time in 4 years they had bloomed and I didn’t miss them.
They knew mumma was coming home. They were cheering me on. And I was listening.
Leaving to go back to rehab was hard. I was sad, then I got mad. I was angry I had to leave. It felt unjust. I was home, oh, please don’t make me go back there.
The MS fog rolled in.
I got confused, frustrated and in the driveway lashed out at my mum. My mum, who had unselfishly taken my daughter under her wing while I was in the hospital. I screamed and cried out my frustration. My mum yelled back saying something to the effect of ‘what would the neighbours think’? I replied with something to the effect of ‘to hell with what the neighbours think’ I have MS! I have MS! I have MS! And I am mad as all holy hell!
Steve put the car in gear and I was bawling, uncontrollably shaking, full on ugly cry bawling. Through my tears, as we reversed out of the driveway I saw Grace in my dad’s arms waving and saying ‘bye mummy’.
And I cried. Bawled. Screamed the whole way back to the Rehab.
It was unfair. It was unfair to all of us.
When I got back to my room I called home. I apologized to my Mum. I asked for Grace and apologized to my beautiful, sweet little girl. She didn’t ask for any of this but she was willingly going along for the ride.
After I said sorry, she told me it was ‘ok’ and that she was sorry I was so frustrated.
Oh, I bawled. I cried for her, for Steve, for me, for everyone.
I would not give up. I would not quit. I was going to go home again. I was going to walk the hell out of here.
I was going to adapt or die.