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.”