Living with Multiple Sclerosis is a daily battle. If you know someone who has the disease you have likely seen the extreme toll it takes on them, but the toll it takes on their loved ones might not be as obvious. Make no mistake, they are living with the disease too, but it’s a different weight they carry.
MS has changed my life in more ways than I can explain, but it is my husband who bears the diagnosis. Diagnosed when we were barely adults, we’ve been living with Multiple Sclerosis for over a decade. This is our story of fighting the odds with a lot of fear, a little bit of courage, and, most importantly, hope.
Steve and I married when I was 20 and he was 22. I was still working towards my degree and we bought our first house. This little 2 bedroom house with the chain link fence and wood paneling on the walls was ours.
We were adults, with a mortgage and everything.
We had fun making the house our home. I came home from a night class one evening to find Steve sitting on our living room floor.
A floor covered in carpet when I left that morning.
Now these same floors were a worn-down hardwood with 30 years’ worth of neglect. My eyes surveyed over the carpet staples still sticking out of the floor holding remnants of carpet pad.
Then my eyes met his. He looked like he finished an epic war with this carpet, dust covering his face, his eyes red from not wearing safety goggles, and a proud grin across his face.
I can’t say I was happy he ripped the carpets up on a whim, but this is the way my husband operates. He sees a problem and he works at it until he finishes. He never gives up.
I, however, will get into analysis paralysis over any decision. I write things down, I think things through, and I am not one to make a quick decision.
We are true opposites.
We spent our evenings and weekends updating our little house. I would wake up every weekend to the sound of the lawnmower roaring and my husband hard at work in the backyard before I had even wiped the sleep out of my eyes.
Little did we know our happy little bubble was about to burst.
A year after our wedding, Steve started complaining of weird symptoms. It started out with a feeling he described as electricity going down his spine.
With the help of the internet, he started to self-diagnose. First he thought it was West Nile virus. Then maybe it was Lyme disease. I wondered if it was hypochondria.
As it turns out, Steve wasn’t neurotic, he was experiencing early symptoms of Multiple Sclerosis.
One morning he woke up complaining of the room spinning and intense nausea. He tried to get out of bed only to come crashing down on top of an old box fan we kept in our bedroom. Any small movement caused a wave of uncontrollable vomiting. I would have sworn he was drunk if I hadn’t been lying in bed next to him all night long.
I don’t even know how I managed to get him into the car and to our family doctor. Our doctor took one look at him and insisted we head straight to the hospital for an MRI.
They admitted him to the hospital as we waited on the results. I can still remember how surreal it felt sitting in a chair next to Steve’s hospital bed while our family came up to wait with us. Everyone else was worried, but I was in shock.
I couldn’t wrap my brain around what was happening. It felt like one of those movies where everything was fast-forwarded around me while I was frozen in time.
I don’t remember how much time passed before our doctor came to see us with the MRI results. He first feared a brain tumor, but the MRI revealed it was Multiple Sclerosis.
My husband’s initial reaction was relief at having an answer to his unexplained symptoms.
I felt numb.
There was no time to analyze what the doctor was saying or think things through. I had no idea what MS was. It wouldn’t take long for me to find out.
It happened so quickly
The next few years felt like a paralyzing nightmare we couldn’t wake from.
It started with what they call relapses, which were periods where his symptoms would flare-up and cause the most issues—dragging his feet, double vision, general weakness. Sometimes it took a quick hospital trip, but he would be back to normal in a few weeks.
Soon I graduated from college. Like many 20-somethings, we had dreams of moving out of our hometown to someplace more exciting. We decided on Arizona because my husband lived there as a teen. We sold our little house with the chain link fence and packed up a U-Haul to head out west.
This is where Steve really started to deteriorate. Instead of his symptoms flaring up and then eventually subsiding, his symptoms kept progressing.
Steve declined at an alarming pace. His doctors tried every MS medication out there, but nothing was stopping this disease from ravaging my husband’s body while we sat by like the helpless children we still were.
He could no longer walk without support and had to stop working. I was beyond stressed being thrusted into the position of sole income provider, but it didn’t last for long. I had to leave early and come in late for doctors appointments, so it didn’t take long before they “eliminated my position”.
Scared, alone, and no jobs, it was time to return home to Indiana.
Two family members flew out to Arizona and drove our U-Haul while Steve and I caught a red-eye back to Indiana. It was 9 months earlier we left Indiana full of hope and excitement to start a new adventure in Arizona.
Now at age 26, my husband was returning home in a wheelchair.
Living with Multiple Sclerosis
At his worst, he couldn’t sit up in his wheelchair, he couldn’t get himself in and out of the bed, he couldn’t even take care of basic daily functions. Our family was wonderful with helping in any way they could, but the situation was no less stressful. I can’t count how many times I struggled to lift my husband off the floor after he fell getting out of the bed or shower.
I wish I could say I was an outstanding nurse to my husband, but I didn’t go into the medical field for a reason. The physical part of caring for Steve got harder and it scared me. The fear manifested as irritability and impatience and Steve took the brunt of everything.
At a time when most couples are still in their honeymoon phase, I was being experiencing depression and anxiety over whether my husband would end up in a nursing home.
I could become bitter from a simple trip to the store. I would see a couple walking through the store holding hands and it would remind me of how I can’t go on a carefree stroll with my husband and hold his hand. Carrying in my groceries would remind me of the days I took for granted when I could grab a single bag from the trunk while Steve took care of the rest.
It’s a hollow feeling to see the future you planned stolen from you. To have these plans with the one you love ripped away and replaced with anxiety and questions and worry.
A light at the end of the tunnel
There was one relapse that put Steve into the hospital for several weeks. We didn’t realize it at the time, but it was the start of a more stable time for us when it came to his disease.
There was a new medicine for MS you take through an IV injection once a month. It didn’t come without it’s risks. During clinical trials, there were cases of patients developing a fatal viral brain disease from taking this new medication.
Talk about risky.
After much discussion and debate, Steve went on the medication. They monitored him because of the potential side-effects, but he took to the medicine well. We still lived in a constant state of fear, never knowing if or when he would have another flare-up or if he would develop the brain disease, but we also hoped this medicine would stop the nightmare we were stuck in.
Days turned into weeks, which turned into months where his symptoms had stabilized. The fear never went away, but it lessened over time. It was as if we had gone through the eye of the storm and the hurricane was finally letting up.
Steve stayed on this medication for about 5 years, and his symptoms stayed at bay the whole time. Every so often a new symptom would appear, but nothing compared to the hell we lived through.
He eventually stopped taking the medicine because he showed signs of susceptibility to developing the fatal brain disease. It is always scary for him to switch medicines, but we now know how strong we can be. We have fought side by side through the toughest time in our lives and we’ve never given up hope.
The silver lining
We have been living with Multiple Sclerosis for almost 14 years now. Steve and I have both accepted our new normal for what it is, and can even appreciate the silver lining that came with MS.
After struggling with infertility partly caused by MS, we have two boys who keep us on our toes. Steve has been the stay at home dad to our kids, attending to their every need. It has been a blessing to have him home caring for the boys every day of their life. Both of us have biological fathers who chose to walk out on us during our childhood, so for our kids to have a loving, nurturing father in their lives means the world.
Our kids also have a silver lining from their dad having MS. I’m positive they will go through the gamut of emotions as they get older when my husband can’t play catch with them like other dads or teach them to drive a car. But more so, they are learning strength and determination from a dad who never gives up.
What’s your story of living with Multiple Sclerosis? Let me know in the comments below.