“Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” – Lao Tzu
Tommy’s mother stayed with us in Maryland for three and a half weeks. Those first two weeks were a blur. I was so out of it when she left I asked Tommy why did she stay only nine days. Thinking back on that time I do remember her doing a lot for me and was afraid I had scared her away. She would cook, wash, and clean for me while Tommy was at work. She prepared breakfast, lunch, and dinner for us. I was humbled and felt terrible because she waited on me hand and foot. Once when she went to get the mail I tried to make myself some lunch. I dropped everything on the floor. When she came back in I was on my hand and knees trying to clean up the mess.
When I looked up at her with tears in my eyes, she told me, “Nicole just ask me and I will get you whatever you need, that’s why I am here.”
I felt so bad because not only did she have to prepare lunch but she also had to clean up the mess I made.
I seemed to be getting better but I still could barely walk, I was using a wheelchair to get around, I would sleep for hours, and worst of all I had gastroesophageal reflux disease. It caused me to not properly digest my food. I would become nauseated after eating and have an uncontrollable urge to vomit. I never knew when I was going to vomit. Sometimes I would be fine and other times the sensation would overpower me within an instant.
Once, while at the dinner table, Tommy, my mother-in-law, and me were about to eat a spaghetti dinner that she had prepared. Five minutes into the meal I began to feel dizzy.
Then before I could react I started to vomit all over the dining room table. Yeah, nasty I know. Too make it worse it was projectile vomit. I looked like the girl from the exorcist movie. Tommy quickly ushered me to the bathroom while his mother cleaned up the mess. Forty-five minutes after a bath and some fresh clothes I swallowed my pride and returned to the living room. I looked towards the dining room and saw the mess was gone a replaced with a two new plates of food set for Tommy and me. I told my mother-in-law thank you but I think I was not going to chance eating again and I would call it a night. I left Tommy and his mother in the living room while I returned to the bedroom. I got in the bed and quietly cried myself to sleep.
The day my mother-in-law left was one of the saddest days since being admitted to the hospital. I wasn’t sure what was going to happen. Tommy started his vacation the day his mother left. This allowed him to stay at home with me for about two weeks. The question is what happens after that.
I could not stay at home by myself and since I used a wheelchair I could no longer easily access our third floor apartment in Maryland or our condo in New Orleans, LA. We decided that we would have to move again. I would go first and Tommy would follow later. So I left my husband (kicking and screaming) to move into my parents’ home in Gonzales, LA.
On my flight from BWI Baltimore to New Orleans I was escorted like a child. I had my own personal attendant. The good thing was I didn’t have to wait in the security line. I went straight to the front. They checked me in and made sure I made it to my seat.
During the flight I reminisced of a younger me. That’s when I realized I was fortunate I could have those memories. I was almost happy I did not find out I had MS until I was older. I was thirty at the time of my diagnosis. Yeah, I know about early detection being helpful but the question is could a young Nicole have handled it as well as the older Nicole? When I was young I had so much going on. I had so much promise. I had my whole future ahead of me. I now know what MS is and what it can do so I am so happy I can remember a time when MS was not my whole life. I was also thinking that I am barely hanging in there as an adult and that’s with massive support from numerous people. The 22-year-old Nicole would have been too proud to ask for help. She would have suffered in silence. I have trouble complaining and asking for help now but I have grown from what I once was. Thank God that I was not afflicted until I was older and able to handle what was coming my way.
When I landed I could feel the heat of Louisiana. I could actually feel the heat in the air. It sat on my back like a bear. I was happy to see my parents but I knew this was going to be a new unwanted chapter of my life.
My Mom, Dad, and Tommy had made the decision that the best thing for me was to live in Gonzales, LA with my parents. I was against it and just couldn’t muster up the strength to act excited to see them. I do love them but God knows I did not want to live with them.
I still needed help with all my activities of daily living. That included bathing, meal preparation, and driving. I’m now 35, self-catherizing and wearing Depends for additional protection. I progressed from the occasional cane to a walker to a wheelchair to a motorized power chair. I don’t welcome “new normals” very well. For me, it’s the period between the “normals” that is the hardest. I don’t welcome any of them. But who would? Who wants to be introduced to a “new normal” that excludes most things you consider normal? As a matter of fact, I saw my leg strength weakening for quite a while. I usually see these “new normals” peaking around the corner but DENIAL, my no good dirty bastard friend, keeps me stagnate. I preferred to crawl around the house rather than use my wheelchair. Can you imagine a grown woman crawling around the house? I would sarcastically, but proudly declare, “Crawling is a mode of transportation.” Most days I had nothing in me to give which suspended my ability to crawl due to my limited energy in the lower half of my body. On those days I had to give in to the contraptions that enable my mobility.
The worst for me though was when the doctor said due to potential muscle spasms in my extremities, “No driving.” AGHHHHHHHHH!
Hearing those words endangered the core of who I knew myself to be. No independence. No privacy. I miss grabbing my keys, slamming the car door shut and going wherever I needed to go, by myself. The loss of my driving privileges has destroyed my sense of self. It’s the most primal thing I bemoan.
In all honesty, I was not surprised. The last time I drove, I remember manually lifting my right foot and placing it on the accelerator. Scary and maladaptive! Still, the idea of ceasing to drive barely crossed the landscape of my mind. I had to drive. At that time, I didn’t see any other option.
I can remember in those earlier “uneventful” ten years when I was again suffering from problems with my eyesight. I had become transiently color blind. I couldn’t decipher the colors on the traffic signals. At intersections I tended to follow the ebb and flow of traffic. When the car next to me slowed to a stop, so did I. When they sped off again, so did I.
It’s the loss of control that is most difficult to succumb to. I guess it has been at the center of many conflicts. I came home one day and found that my mother had washed my sheets, made the bed and was proceeding to vacuum the room I slept in. I felt so happy the work was done. Frustrated that I couldn’t do it myself. Embarrassed I didn’t tell her how I felt.
Later when I was re-telling this story to a fellow MSer, she reminded me that it is excruciating for our parents to watch us go through this, especially knowing there is very little that they can do. Sometimes cleaning is the only thing she can offer.
“She’s not trying to alienate you. She’s trying to help you! Now stop being a prick and grow up!”, my friend with MS scolded.
It’s just that I hated that people started to treat me differently. I hate needing help. And, sadly, I find myself resenting those who offer help and strangely enough those that don’t offer it.