“Every disability conceals a vocation, if only we can find it, which will ‘turn the necessity to glorious gain.” ― C.S. Lewis
One day after work, MS doused me all at once with a host of symptoms as if to say, “Hey remember me?”
I had extreme fatigue, trouble concentrating and vertigo. Everyday after that, I would have one or more of each symptom.
Because of my symptoms, my job became more difficult and I was having trouble progressing in my position. It was one of those jobs where you are continually learning because new technologies are always emerging. I just seemed to be one step behind everyone else. I couldn’t remember the simplest things and learning new task was like trying to master a foreign language in one day.
I began taking some new medications, which gave me a great night sleep but caused me to lose all sense of where I was. One particular night I woke up with an unbelievable urge to use the restroom. I sat up in the bed and rubbed my eyes in an attempt to gather my bearings. Tommy was lying next to me sound asleep so I didn’t want to wake him with the light from the lamp. The moon gave me some faint light but I still had to wait a few minutes for my eyes to adjust to the dark before I was able to see. I slowly got out of the bed and positioned myself like a Buckingham Palace soldier about ten feet from the bathroom door. As I stood next to the bed I felt as if I was floating. The medicine seemed to be particularly strong at that moment and I was having trouble concentrating. I tried to focus on the nightlight that was shining in the bathroom. I must have stood next to the bed looking towards the bathroom for about two minutes.
Tommy, who is a ridiculously light sleeper, chimed out, “What are you doing?”
His words were like a runner’s starting gun in my mind because as soon as I heard him speak I took off running full speed toward the light in the bathroom. As I got closer to the nightlight, suddenly I could feel the coldness of the bathroom surface on my feet then instantly the hardness of the floor on my face. I had slipped and fell face first into the ceramic tile.
As I lied on the floor I could hear Tommy screaming my name. Within seconds he was on top of me asking what seemed like a thousand and one questions.
“Nicole, are you alright? What were you thinking? Where is that blood coming from?”
I had no answers for any of his questions. Instead I just kept moaning, “It hurts! It hurts!”
Tommy sat me up and began to check my face and body for damage. He said, “Thank God. It looks like you only have a split lip”.
He got a wet towel and wiped the blood from my cheek. Then he cleaned the bloody floor. As he helped me back to the bed he continued chastising me. We finally settled in to go back to sleep and I kept saying, “It hurts! It hurts!”
Tommy roughly responded, “Good! Maybe now you will be more careful! Now go to sleep!”
That morning, even before I opened my eyes, I could feel pain coming from my mouth. I started to moan. Tommy quickly asked me if I was all right. I told him where the pain was coming from and he began to inspect my mouth area. Because it was now daylight and not the middle of the night he was able to get a better view of the damage. He found that my inside lip was cut in two places which made my face swell and a tooth was chipped. While he was looking in my mouth I could see the concern on his face. I asked him for a mirror and he warned me that it was pretty bad. As he handed me the mirror I didn’t know what to expect but what I saw almost brought instant tears to my eyes. I looked like a battered woman. Like someone had punched me square in the face.
Tommy began saying that he was sorry. “Nicole if I would have known it was that bad I would had brought you to the hospital last night. I’m sorry. It didn’t look that bad last night.”
He cleaned me up and then I called our dentist. It was Saturday but there was an emergency number on the dentist voice service. After talking to the dentist I decided I could wait until Monday so maybe the swelling would go down. Also, I didn’t have to go to work until Monday so hopefully I would be in better shape by then.
Sure enough when Monday came the swelling on my face had dissipated. I worked half a day and the second half I went to the dentist and he fixed my tooth.
After my fall everything seemed to go down hill from there.
I began to hate going to work. My ability to process the smallest things became a huge challenge. In my job, I was talking to doctors all day long. And not just general doctors but cardiologist. Some of these guys where the most arrogant people you will ever meet. They always knew when something was wrong with me and never hesitated to comment about it. They would make fun of me because I was always tripping when I walked and because I continually dropped things. I even had one doctor ask my superior to stop sending me to his clinic. This particular doctor was known for being a real A-hole so I was told not to take it personal but that’s exactly what I did.
So now, not only am I physically having problems keeping up with the requirements at work but I also doubt my ability to make precise judgments. That’s not good when you literally have people’s lives in your hands. I would slow down and speed up patient’s hearts during check-ups and assisted during heart surgery.
To excel in this position, I not only needed physical strength and stamina but also the upmost confidence and ability to recall my training.
I was lacking both.
While I was struggling to keep up with the demands of my job, Tommy was thriving. He graduated with a Masters of Science from the University of Maryland. He quit his job at Kellogg’s and became a manager at The Catholic University of America bookstore in DC. I didn’t let him know about the problems I was having at work because I could see that he was really enjoying his new career and I didn’t want to interrupt his success yet again. I just kept everything to myself and handled it the best way I knew how.
That was by not working.
I would come home as early as possible and I took off every chance I got. I would offer my clinic visits to any colleague who wanted them. Even my coveted “on call”, which was easier when compared to normal visits and paid up to an extra $500, was up for grabs. I began to take more and more sick and vacation days. It got so bad that by October I had used all my vacation for the year and had no time off for Thanksgiving or Christmas.
I knew something had to give. There was no way I could keep up with my work schedule and it seemed to be getting harder for me to cope by the week. I hung in there as long as I could and then I finally broke down and told Tommy what was going on with me.
He seemed to understand what I was going through but because I had kept it from him for so long he didn’t appreciate the extent of my problems. He wanted me to take a leave of absence for a month or so and I knew that wouldn’t be enough. I told him I was thinking of quitting. He was totally surprised by my quitting revelation.
After talking about it for a few hours, I was finally about to explain all of my problems and level of my inabilities. Tommy said he understood and agreed that I should probably consider changing my career. Then I hit him with my biggest request. I told him I wanted to move back to New Orleans. As soon as the words came out of my mouth I could see the disappointment all over his face. But it quickly turned into words of affirmation.
He said, “Well, it’s going to be hard but I think we can do it. If this is what you need to get better then lets do it.”
Over the next couple of days we both researched job opportunities. Thanks to his store manager and regional managers, Tommy was able to get a transfer within the company he was working for.
He got a job at the Dillard University bookstore in New Orleans. He was no longer a manager but at least it was in the same field. I was offered a job at an Ochsner Hospital Clinic in New Orleans. We made a preliminary plan to move from Silver Spring, MD to New Orleans, LA in two months.
I left my job early on the pretense that I needed to find us a place to live in New Orleans. The truth was I really couldn’t keep up with the demands of the job so this gave me an excuse to quit before I really should have. During the day I researched homes online from Maryland. Tommy wanted to get an apartment in New Orleans but I had my heart set on getting a house. Tommy finally broke down and agreed to us buying a house. His only request was that the home would have no stairs.
After a few weeks of looking at houses online, I found a newly constructed condo in the Uptown (high ground) area of New Orleans. I saw that there was an open house showing of the property the next week and asked my mother to attend. She did and she loved it. The only problem was the home was two stories and had two sets of stairs inside. Tommy was totally against any stairs. I told him that the stairs were smaller than a normal set of stairs. I begged him daily to change his mind until he finally broke down and agreed. He said he believed the stairs would eventually become a problem for me. I knew there was some truth in what he was saying but I was in so much denial about my MS. Ignoring the stairs would become one of many bad decisions fueled by my denial.
Another bad decision was how I purchased that condo. We purchased the condo online. Yes, without even seeing the home in person. My mother had seen the space but neither Tommy nor myself saw the house before purchase. I was convinced that living there would somehow make me happier which in turn would make me better.
Well now I know it is, but at the time I was sure that was the right thing to do. All I needed was a job change, a new living space and to move back to New Orleans and my MS would some how subside.
It took us a month but we purchased the condo and even closed on the deal without even going to New Orleans. After wrapping things up, once again we packed all of our belongings, said goodbye to friends and moved back to New Orleans.
I flew to Baton Rouge and Tommy drove from Maryland and a few days later we met up to go to see the condo. We stopped at our realtor’s office and picked up our keys. On the drive to the house I was so excited. Once we made it to the neighborhood Tommy said how much he loved the look of the area and that he liked how close it was to the Magazine Street shops.
This made me even more excited. We pulled up to the condo and once again Tommy commented on how beautiful the home was. We exited the car and approached the front door. Tommy put the key in the lock and opened the door and we headed inside.
The home had the look of a classic New Orleans home. I walked around the first level checking everything out. I was commenting on how much I liked the place then I realized Tommy wasn’t saying anything. I turned around and saw him standing in front of the stairs. He was just staring at the stairs. I could see the frustration on his face. He didn’t say anything.
He sat on the steps and looked up at me. He said, “This may be the worst thing we have ever done.”
I tried to convince him that it wasn’t that bad by going up and down the stairs but it didn’t help. He said, “What happens when you’re tired? What happens when you’re weak?”
He told me, “Nicole I will not help you up or down these stairs”.
A part of me felt terrible because it seemed as if I had tricked him into getting the house. Especially since his only request was that the house have no stairs.
The whole time we lived in our condo those stairs were my worst enemy. And Tommy was a man of his word. He never helped me when I was having trouble. He would watch as I literally crawl up the stairs. The days when I was tired and I needed to come down the stairs, I would sit and scoot down each step. I even slept down stairs in the living room one night because I was too tired to make it upstairs. When I would struggle on the stairs I could see that Tommy was upset but he never commented and he never helped me when it came to the stairs. I guess I had that coming.
Besides my fatigue problems, we began to have money problems. My salary was reduced 60% from what I was earning in DC and Tommy’s job cut his hours to part-time. After only four months we realized that we could not afford the condo anymore. We asked Tommy’s sister, Kim, to move in with us. And luckily she agreed. The rent she paid helped us make up the difference but we were still losing money every month. Also, we could not really do anything because we didn’t have any extra money. We were living check-to-check and dipping into our saving every month. I could feel the tension increasing because of the money and the “stairs” issues. I knew something had to change.
I was still in contact with a few people from my last job in DC. During one particular conversation with a former colleague I hinted that I was interested in coming back to the company. One month later I got a call from my former boss. She said my old job was still open and I should apply to get it back. Wow! I couldn’t believe what she was saying. Now I needed to tell Tommy about my plans. This would not be the first time I have asked Tommy to up and move so I was nervous about bringing the subject up.
The next day, after talking to my former boss, I asked Tommy to sit down and I just quickly told him about the job offer. The second I finished telling him he said with no hesitation, “Let’s do it!”
I was so surprised but then he said that he didn’t think that we were going to make it in New Orleans. The local economy was still to rocky, there were Army tanks rolling in the streets and parts of the city were still under a curfew do to the aftermath of Hurricane Katrina.
So guess what? Off we went back to DC!
I got my old job back and even got a raise. Tommy got rehired at The Catholic University Bookstore but not doing his old job. He got a promotion and a raise. We put our condo up for sale but after two months we only had two people come look at the property. We decided to rent the place out and within two weeks we had a tenant that not only paid our mortgage but also left us with a little extra money each month.
Once we got back to DC, it was as if we never left. Actually it was better because we were both doing so well and because we had a new appreciation for the life we had built. It was a great life that we had so easily abandoned.
Everything seemed to be back on track except that I hated taking my MS medicine. I was on Copaxone, which I hated. Not because it made me sick or anything but because I hated the shot. I hated that my MS medication requires me to take injections. My injection site became irritated, raw and sensitive. My feared I would have to do this every day for the foreseeable future. I knew it was going to start getting old fast. And that’s when I began missing shots. I was down from 7 days a week, to 3 times a week.
Why do I always neglect my MS when things are going well? If I only knew what was ahead for me I would not have missed a single dose. Not that I believe my medicine was a cure but at least I would know I took every precaution.
I am 43 years old and was diagnosed with MS a year back. I am an Indian,living in the western part of India, which has at least 4 months of summer when the temperature goes above 40 degrees centigrade everyday. My main concern is fatigue because each day becomes never ending and by the end of it,I am really frustrated. After reading all that you have been through,I feel that I am in a much better condition.Your blog has given me a lot of inspiration and positivity. Thank you for that.