The Story of Our MS
Multiple Sclerosis does not just affect the person diagnosed. MS affects all those involved in the diagnosed person’s life.
I was thirteen when my mom was diagnosed. We had been in CA and AZ for vacation and she was constantly sick. Dizzy with vertigo, couldn’t walk, sick to her stomach. When we thought she was over it, suddenly it would come back with a vengeance. I will never forget the thoughts in my head and the fear in my heart. I thought she was dying. And I re-read my journal entries from this time and I can still feel that young girls fear.
We returned to CO and after many doctor’s visits, all saying she was fine, my dad actually said to the doctor… “I think she has Multiple Sclerosis. Can we have her tested for that?” Sure enough, he was right. My parents pulled me into what was my moms office in our house, painted a plum color, and I was told the diagnosis. I burst into tears. I was incredibly close and dependent on my mom. The thought of losing her was excruciating. “Is she going to die?” They explained that you do not die from MS and that she would live a long life. They explained she would go on medications as MS has what are called attacks. Attacks of the body, the speech, the nerves, and the muscles. So, I didn’t really prepare myself for the effects of MS. At first there weren’t any major changes. She would slur her speech at times and couldn’t get things out clearly and she was tired a bit faster than normal. But that was mostly when she was over heated. She didn’t need naps as much in the beginning. From what I can remember. My mom was an attorney though. And because of the speech slurring, she did not want judges to think she was drunk. So, before the cases she would be presenting, she would talk to the judge in advance, telling him what might happen.
MS didn’t stop her though. And I learned to give her the shots she needed when my dad was gone. I learned how to help, how to try to keep her stress levels down (which was incredibly hard for me. My mom was not a calm person to begin with, I will be honest.) I helped more at home, more with Sheena (my sister with Down Syndrome) and took on more responsibility to keep my mom’s stress levels at bay. It became so much; adults would worry that I was “taking on too much”. That I was too responsible for my age. I was constantly called an old soul. I didn’t mind. I liked it. I didn’t relate to most people my age anyway. Our pastor at the time called me into his office.
“Melissa. This is going to get worse with time. And you must remember, it is not your responsibility. Sheena and your mom are not yours to take care of as they get older.” I nodded. Hearing his words, but knowing, it would always be my responsibility. It was a part of my life I accepted. It has always been in the plan for my life.
My sophomore year of high school my dad decided to merge his company with another company, and they decided to make headquarters in AZ. We moved out to Arizona my sophomore year of high school and things remained fairly normal.
I decided to attend Arizona State to stay closer to home. I wasn’t quite ready to the point of being in another state from my family. To be honest, I wanted to be sure that I was close, if I was needed.
My sophomore year of college, things got real. My sister was in High School and I was flooded with schoolwork, a job and my dad was always out of town on business. MS had seemed pretty easy at this point. My mom was tired easier and often needed to nap. But nothing major. She took care of all the housework and meals, I helped where I could, and it was pretty smooth sailing. Until it wasn’t. My mom began to have back pain. At first, we’d sit with her in the hot tub (one of the worst places someone with MS can be, we soon learned), went to the doctors, acupuncturists, massage therapist, anything to try and help. The acupuncturist was definitely my favorite! I’ll never forget him pulling me out of the room and saying, “Your eyes tell me you smoke a lot of marijuana. Do you smoke a lot?” I looked at him and started laughing. I had never touched a drug in my life and barely drank. Then he asked “Have you been pregnant then? I’m sensing you’ve been pregnant.” 0-2 fine sir! I had not even had sex at that point! He stopped guessing after I lost it in laughter with that question!
But anyway, nothing worked, and the pain became so bad, she couldn’t move. The only thing she did was lie on the couch in agony. Her MS doctor told us there was nothing that could be done, as this was showing up as a full blown, MS attack. We would have to ride it out. All responsibilities became mine. It was incredibly stressful. Finally, our amazing church got involved and we had meals delivered, people to sit with her while I was in class, people to help with laundry and cleaning and more. I think this was when I experienced my first true mental break down. Seriously. When you are so overloaded you begin to just break down. I was there. This lasted for a good three months. My mom was withering away as she couldn’t eat anything because her body would not hold it down. She was a skeleton. My dad had called the doctor and said he had to get her in. That she looked like she was dying. We were told to bring her in immediately.
What my dad did next has never left my mind, my heart, and my soul. I saw true love at its highest power. My mom has always been someone who gets herself ready like she’s going to a gathering of the finest caliber no matter where she’s going. You never would see her without her makeup on. Even doing nothing at home. I did not get that from her! As she lay there, we both knew my mom would not want to be seen in public the way she looked. My dad gently picked her up off the couch, carried her into the bathroom and began doing her hair and putting on her makeup. My eyes still fill with tears thinking about that. That’s what true love will always look like to me.
We got through the attack and she was placed on new medication. By this point I had become incredibly active in my fitness routine. I wasn’t sure if her form of MS was genetic and if I was going to be getting it as well, so I wanted to become proactive. I loved being at the gym. I already knew the importance of a healthy diet, but the gym was now becoming another passion and love of mine. I began trying to get my mom active with exercise, explaining the more muscle we build on her, the more she would have when her body began attacking and breaking down the muscles. Unfortunately, she did not find the passion I did for exercising. Or eating right.
The years passed. Naps became a daily requirement (though she fought them like crazy!) but other than that, nobody would even have known she had MS.
In 2012 everything changed, and nothing would ever be the same. I lost the mom that I knew. The mom that I would go to 3-5 times a day for support or to tell something new to, left.
I had flown back to AZ (I was living in Los Angeles at the time) to attend one of our favorite charity events. My aunt was there as well, and my mom was so excited to have us all together. Suddenly in her excitement, she began laughing and crying at the same time. She couldn’t talk and was in a frozen position. Thank God my aunt is a nurse and was able to jump in right away. All her signs pointed to her having a stroke. We called 911 and I sat on the stairs watching as the paramedics tried to figure out what was happening. My dad said I was white as snow. And I was silent. Which for me, is not normal! I was numb. I thought this was it. I thought she was dying. We got to the hospital and it was found that she was not having a stroke but had a seizure. She was kept at the hospital for three days, where MRI’s, cat scans and blood work were performed. The seizure had definitely caused brain damage, but it mainly was in the frontal cortex. The affects were minor at first. She would stutter a lot but could finally get her thoughts out. She would never drive again, though. Which was incredibly hard for someone so independent. But we had lost a beautiful friend, only in her 30’s, to a car accident to someone who had gone into seizures driving, and struck her head on, killing her on impact. Reminding her of this, I think the decision became clearer, driving was not an option.
At the beginning, the seizures were not close together. She could go months without one. But we at least recognized when they were occurring and what steps to take until she came out of them. They became less scary with each one. Unfortunately, each seizure lead to more and more brain damage. They also lead to losing strength in her legs. Talking with her became different. Harder. For everyone. She began having bad falls over the years as well, one even landing her in the ocean in Antarctica! Brrrr! Longer seizures would force my dad to call 911 and the paramedics became familiar with our house.
This past year, during Covid, things went down hill faster than any of us expected. Where she had been using a walker, she was now almost completely wheelchair bound. She began to have what we now call, episodes, where she would completely become void in her eyes, looking from right to left, unable to talk. We were calling the paramedics repeatedly and finally, she was kept in the hospitals and rehab center. She would go back and forth from each one as she would have different medical emergencies. This all started in CO and at the orders of her doctors at Mayo clinic, she was med jetted back to Phoenix. The doctors still cannot figure out what is going on with her as they say they have never seen anything like this. Leave it to my mom to do something original! They continue to work on her case. They can see from the MRI’s that there is a mass on her brain. The only way to find out what that mass is, is through a brain biopsy. Which is a huge risk.
She is home now with my dad and is in need to complete care. It is not easy to watch. But I do know that this is some relief to her. She is still zoning out and we hope to see her begin gaining strength enough to possibly feed herself and use her right side again. I’m not sure if she will ever be able to walk again. Even just a little bit would be a blessing.
In these situations, it is not easy to stay chipper and smiley every day. Sometimes I must drag myself out of bed. I always must force myself to do a workout, and I feel emotionally drained. Thank God for him, my family, my amazing friends and all who just let me be me. This is a really tough ride. And it’s unfortunately not going to get easier. Many do not understand really what we are witnessing, and I pray that they never have to understand this. I am continuing to find ways where I want to eventually help others with MS and their families. There are amazing benefits that Pilates can bring to those who have MS. I can use my experiences to help support others in their journey’s. There are great advances, medically for those diagnosed with MS. So, here’s hoping someday the world will be free of MS! We are close…