I got the call at the end of my daughter’s second week of her freshman year in college. She told me that her feet and legs had been going numb. Knowing my daughter doesn’t complain when she’s hurt or sick, and that she is very independent, I knew something was not right.
That weekend she went to an urgent care clinic where she was given muscle relaxers. When that didn’t work and the numbness continued to get worse and move up her body, she went into the clinic in the town she was going to college. The doctor ordered an MRI of her low back. I went to visit her and go to the appointment with her. Stating she wanted to rest she stayed at the hotel instead of her dorm that night. When she got up the next morning, I noticed she was having trouble getting out of bed and walking. I told myself again something was not right. In the brief time I saw her I noticed how much weaker she seemed. She was sitting down more often and having trouble carrying things.
When the MRI of her low back didn’t show what was causing her symptoms, an appointment was made with a neurologist. Since this appointment was several months away, the doctor advised her to go to the ER in the closest metro area should the numbness continue to get worse. I am thankful for the doctor telling her that.
A couple days later, my daughter called and things were getting worse. I told her we were going to the ER and left work to meet her there. When I got there I noticed things had gotten worse from when I last saw her. She doesn’t say much but I could tell she had trouble driving and in addition to the numbness & tingling in her body, she was also experiencing problems with her left side.
In the ER she was first examined by two doctors who were not able to tell us anything. Then the neurologist on call came in and started to examine her. Based on the tests she was doing, I knew this was not a minor issue. An MRI of my daughter’s brain and spine was ordered and they wheeled her out for her tests. While she was away, the neurologist came in and asked me several questions. At the end of the conversation I was told she suspected this was Multiple Sclerosis (MS). After the doctor left the room, I could hear some of the staff talking in the hall. They were saying things like “MS? How can that be she is only 18?” After the MRI the neurologist came in to discuss the results with us. It appeared that what she suspected was true. Based on the lesions and the numbness continuing through her body, my daughter was admitted to the hospital in the critical care unit. I remember trying to hold back my tears to stay strong for her.
That was a very difficult 7 days my daughter spent in the hospital. She underwent several tests and towards the end of her stay she started physical and occupational therapy. To see what this unpredictable disease can do to a person almost overnight is very scary. She went from being an active 18-year-old just starting a new chapter in her life at college to barely being able to walk and perform simple tasks. During her therapy, it was difficult to see her require assistance to stand and how challenging some of the tasks were for her. One I remember the most was when she was putting pegs into a board and it was timed by the therapist. This would take a normal person a few seconds max to do and it was taking her a minute and a half.
Looking back on the couple years prior to her diagnosis there were symptoms and things she dealt with but at the time she just pushed through. After her diagnosis these things all started to make more sense. As a parent I still have a lot of guilt because I feel that I should have known not to let her be in certain activities and I should have read the signs earlier.
When she was discharged from the hospital we moved her back home as she recovered and worked on getting her strength back. I remember how difficult it was to move her into her college dorm just a few weeks earlier, but moving her things home was much worse. It was a reminder of what she now would be living with for the rest of her life and having to deal with at such a young age.
That first year after her diagnosis was the most difficult, finding the right medications, learning to give herself injections, learning to listen to her body and to change her eating and exercising habits along with dealing with symptoms. But, my daughter is strong willed and had an amazing boyfriend who was with her every step of the way. He pushed her to get up and exercise even when it was difficult. He could even give her injections way better than I could. We were also very lucky with the group of wonderful neurologists that took care of her during her hospital stay and one of them who specializes in MS became her regular doctor.
My daughter took online classes that year at home and was determined to go back to college the following fall. She registered at a smaller college where she had a stronger support system and was close to her neurologist. As a parent I was very nervous for her to go back to school because I wouldn’t be there to see how she was feeling, tell her when she needed to slow down, make sure she took her meds, ate right and exercised. However, I knew that it was in her best interest to go back and lead as normal life as possible.
With a disease like MS, unless someone has lived with it or has a close relative with it, it’s hard to understand what someone goes through. Every case of MS is different; no two people are affected the same. A person may look fine on the outside but be dealing with various issues on the inside.
I once overhead someone saying (shortly after my daughter’s diagnosis) that MS isn’t that bad. I don’t think that comment was meant to be hurtful, however I believe the comment was made based on this individual’s perception of seeing people functioning on a daily basis with MS. That is a comment I will never forget because at the time it was like pouring salt on a wound, having just witnessed what this disease could do. I am well aware of many things that are worse, but no one wants to see their beautiful child diagnosed with a chronic disease. As parents we want the best for our children and try to protect them from pain.
My hope for anyone reading this, is that we don’t simply judge how a person is feeling and functioning based on how they look on the outside. We do not know what issues or battles a person may be facing on a daily basis.
Fast forward to now, more than four years later. My daughter went back to college, caught up with the rest of her class and graduated undergrad Summa Cum Laude. She is now in graduate school for Occupational Therapy. Her interest in Occupational Therapy came from when she herself had occupational therapy in the hospital.
As for that amazing boyfriend that stood by her side through everything, he is now her husband. After 7 years of being together (they were high school sweethearts) they were married this past summer.
Currently my daughter does a good job of managing her MS. It’s bittersweet in a way. My heart breaks because of the issues she deals with, but at the same time I am so overwhelmingly proud of how she has handled everything at such a young age.
After her diagnosis my perspective has changed on many levels. What I once thought was important is not really that significant anymore. We all live such busy lives and get wrapped up in day to day things that are sometimes really not that important. It can be hard to do but we should always enjoy the simple things and never take life for granted.