The lights went out for me mentally and emotionally. I couldn’t process much more after his official diagnosis. I saw visions of me “rolling” to the Bursars’ Office and withdrawing from nursing school. I kept hearing tormenting echoes of the doctor’s earlier words, “chronic progressive debilitating disease.”
To my relief and surprise that was not my reality at all. Not then, at least! Once I got past the initial shock, I underwent the required dose of outpatient intravenous steroids. My eyesight slowly returned to baseline and I returned to class and began running again. The only true difference between that day and the day before were the shots I had to give myself and the fact that I now knew I had Multiple Sclerosis. I somehow found solace in this. I chuckle now as I remember years ago telling people, “Yes, I have it (MS) but it’s never stopped me from doing what I want to do.”
Fast forward 10 relatively “uneventful” years during which time I completed nursing school and began my nursing career running through the floors of the local intensive care unit. Next, due to the inherent stress of the ICU and fatigue of shift work, I opted to slow things down a bit. I chose to work in a 9 to 5 cardiology clinic and was introduced to not only the second half of my career (Sales), but I also married my supportive college sweetheart, Tommy. I am still a happily married RN with a sales mentality who can design and impart a heck of an awesome interactive presentation!
“My wife has multiple sclerosis. She hit her head and fell. She’s unconscious. No, I don’t know all of her medications. There’s just so many. Okay. Yes, I’ll just bring them all.” The ambulance response time was only minutes later. They arrived and carted me off to the nearest hospital. In the ambulance I was groggy due to my blood pressure taking a dive. Soon I was awake and coherent. They only had to give me fluids. Tommy, Kisha (my close friend) and I sat in the ER like the three amigos, now laughing and joking. I had no clue I was about to be admitted and not leave rehab until nearly three weeks later!!
Actually, I was in the hospital in Silver Spring, MD, for a week. My parents joined me from Louisiana. Then I was taken by ambulance to an inpatient acute rehab center farther north in Germantown, MD. Once I made it there and my parents saw I was in good hands, they returned to their lives and careers in Louisiana. I cried like the baby I felt I had become. I was there two more weeks. I spent my days among mostly elderly people who immediately befriended me. And guess what, disability has no face, age, race or sex.
We were kept on a strict schedule. I did physical therapy three hours per day. I was taught how to live in a wheelchair: cook, clean, get dressed. Often I was too exhausted to cry. And then there were the humbling shower experiences. I was a fall risk so I had to attain special permission. They deemed I required an occupational therapist near the stall with me! However, it was the aide who took her time and lined my panties with the required sanitary napkins. Yes! My monthly visitor was in town! Those evenings the tears were of pure gratitude for the help.
When it was time for me to be discharged, my husband picked me up and said, “My mom’s coming out here.” Silence, this time from me. “Why?” I sincerely wanted to know. Denial had been my constant companion for months. “To take care of you!” he shouted. My tears were now circling and threatening to pounce. ”Thank you” would never be enough.
This is the MS exacerbation that has carved yet another turning point in the course of my life. I mourn the loss of who I used to be. Though I miss many of the daily activities I use to take for granted, I have to accept, adapt, and keep moving forward. That’s all I can do. I’m learning to continually adjust to new norms. Some adjustments are smoother than others. Some ransack my life like Hurricane Katrina ransacked New Orleans! This exacerbation started months before while I was still working. I only had a limp that just progressed to less mobility and put me in a wheelchair (that I still use). Within weeks I couldn’t perform my job responsibilities. I guess that’s what they mean by chronic progressive debilitating disease. I couldn’t access our third floor apartment in Maryland or our condo in New Orleans, LA so I left my husband (kicking and screaming) to move into my parents’ home in Gonzales, LA.
I still needed help with all my activities of daily living. That included bathing, meal preparation, and later driving. I’m now 36, 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. 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. People 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 help too!
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 my self, and 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.