The Middle…Now What?

What does middle even mean? Here we are, 30 years old, one child, the rest of our lives ahead of us……oh and by the way, you have MS. I told you Stephen isn’t a complainer. And I mean it, really he didn’t have much of a pity party. There were a few times, “why me”, but I can literally count them on one hand. Not bad. I tell him all the time, if it were me, we would be in trouble. Not funny I know, but true.

The life we thought we were going to have had been given a new meaning. It was time to start trying to grow our family and for multiple reasons it didn’t work out as we had envisioned. That is a totally different blog post for a different time. We were learning to understand the meaning of you get what you get. Our Caroline was/is a true blessing. I know we all think this as parents, but seriously, she was an easy baby, kid, teen. What??? is that even possible? How did we get blessed with such as easy kid…I don’t know, sometimes I think it’s because having a dad with MS is all she’s ever known. This is her normal. And Stephen’s disease was slowly becoming our normal.

It didn’t happen overnight. It was subtle. We started a MS150 bike team. With the help of amazing friends and family we have had a team since 2005. For those that don’t know the BP MS150 is a bike ride from Houston to Austin, 150 miles, to raise money for MS. This was a something that Stephen was good at. He rode for many years. He was a strong rider. Then it just got to be too much. The next step was riding tandem with a dear friend. No, not me, are you crazy. We wanted to stay married! That lasted for a few years and in 2013 that was his last ride. It was bittersweet. He had the heart for it, his body just wouldn’t cooperate. It is so ironic. Something that we knew nothing about has become the biggest part of our lives. Remember I said when he was diagnosed we knew NO ONE with MS, well that has changed. We met and learned of so many others we knew personally or who were friends of friends fighting this same fight. Sure it looks a little different for everyone, but it is still the same disease.

All these “middle years” have so much that has happened. We have gotten older, Caroline is older, and the MS has gotten older. And by older I mean more prominent, more visible, more of a nuisance. Multiple drug treatments, physical therapy, special diets, new symptoms, worsening symptoms. That is what “the middle” looks like. It isn’t pretty. It isn’t easy. He struggles every day, amazingly with a smile. Ok, sometimes he’s a grouch, but mostly with a smile. HOW? I don’t know. I wonder ever day, how? Why? What else? How much more? Walking is an issue that everyone can see but all the hidden symptoms are there. Getting worse even with the best options available. I won’t bore you with the specifics, when someone asks Stephen how he is he will never give the full truth. But really, do you blame him? It is a lot, some issues are private, he would never share those issues. But it’s hard to not notice the physical toll MS has taken on his body. The simplest of tasks are a huge undertaking. But he manages. We manage. We truly have a huge support system of people who are always willing and ready to help out when needed.

As we are stuck right in the middle? We can’t help but think what the next phase looks like. I know I do, Stephen does too. There are a lot of things we don’t verbalize. I’m not saying it’s right or wrong, it just “is”.  I can see what 15 years into MS looks like and I wonder about the next 15…and so on. Things as simple as walking his daughter down the isle at her wedding to losing the ability to drive to using a wheelchair. I realize there are many amazing options to help with all these issues, but coming to grip with the loss in slow motion is different all together. These are “those” things that we don’t verbalize. We don’t talk about those things because it makes it more real. We know in our hearts it’s inevitable, but we chose to look the other way. Stephen is a man, he keeps a lot in. I don’t push him and beg him to “talk or share” but when the time is right the conversations happen. In some ways I think it is how he copes. It’s How he deals with the hand he’s been dealt. “No sense in dwelling on something I can’t change” is something he has said time and time again.


The Beginning…what? MS?

Thanks for joining us! First, let me introduce myself. My name is Amy Johnson. I’m married to Stephen. We have a 17-year-old daughter named Caroline. We live in Houston, Texas and this is the story of Stephen’s life with Multiple Sclerosis.

We have been married for 22 years and Stephen has had MS for 15 of those years. This is his journey as told by me. The beginning, the middle and the future. Of course, he has input, its’ HIS STORY, but after some discussion, he handed the writing over to me. Yikes….hope I don’t mess this up. Stephen was diagnosed in August 2003. If you know Stephen, you know he is not a complainer, he’s not sick very often, he has no weird ailments, he’s literally a happy, likable guy. He likes Aggie football, golf, playing cards, drinking beer, family and friends and he is always up for a party. So this diagnosis kind of threw us for a loop…to say the least.

He was having some issues, i.e. numbness in his hands and feet, some dizziness, and he felt like his gait was off. No biggie right, not really, except he never told me about this (insert eye roll emoji). He “didn’t want to worry me” until he knew what was going on. He had seen a few different doctors and had a few tests run before I accidentally found out that there was an issue. I intercepted a message (back when doctors left voicemail) about an upcoming MRI. I said at dinner one night, nonchalantly, “I hope this other Stephen Johnson doesn’t miss his MRI appointment, they obviously called the wrong number.” Hmmmmmm, that is when he had to fess up. Fast forward to a few more doctor appointments and a few other tests and he got the final word after a spinal tap. Did I mention that he’s terrified of needles? Well, he survived the test, and while the results were not what we wanted, it was the best-worst case scenario diagnosis. When the doctors said he had multiple sclerosis, I’m not going to lie, I wasn’t sure what that really meant. Technical terms, medical jargon…blah blah blah. “He has a chronic, often disabling disease that attacks the central nervous system. Symptoms can be mild, such as numbness or severe such as paralysis or loss of vision.” Ok, now what?

I’m not going to lie and say I know exactly how he was feeling or what was going through his head but I do know it was a lot to process. While we were grateful that is wasn’t some other diseases; hence the best-worst case scenario, we were still unsure of what this really meant for him, for us, and for our family. That was August, the doctors told him to take some time. Let it all sink in. I can honestly say at that point neither one of us had ever known anyone with MS. Hard to believe that now, maybe we lived in a bubble? I’m not sure, but we took the doctors advice, told our family and friends and just like that life went on.

“He has a chronic, often disabling disease that attacks the central nervous system. Symptoms can be mild, such as numbness or severe such as paralysis or loss of vision.”

The Johnson's