J and I married in 2000. He was such a funny, care-free, kind, hard-working, likeable guy. He still is. He was the type who could talk to anyone and immediately break down the normal barriers between people. He never met a person that he didn’t become pals with. Seriously. He wasn’t shy. He was a go-getter. He had the most positive attitude. He loved God and wasn’t afraid to share about his relationship with God. He was generous. He was also very handsome. However when I first met him I thought he was some silly, army guy from Pennsylvania. I did not see a future with him in any way, however he told me not long after we met that he was going to marry me. When I think about that now I smile. Back then I was sure he was off his rocker. When we met he was an army cook. I’m quite certain he only weighed about 120 lbs. then. He had gorgeous brown eyes and brown hair and was so tan. I was a school teacher and was in my first year of teaching. I was looking for a husband but none were to be found. Long story short J chased me. He was relentless and patient. He learned about the things that I liked and made sure to try to impress me whenever he could. He was patient because I resisted his charms for almost 2 years! We did eventually date and then marry obviously.
I’ve heard it said that love is blind and I guess that is somewhat true. While I knew he wasn’t perfect I did not see what would become more and more obvious as the years passed. He was struggling with a progressive neurological-type disease.
Our early marriage was typical. We enjoyed spending time doing nothing and hanging out with friends. We traveled when we could and both worked toward becoming a family. J was still in college in our first years of marriage and was also active duty military during that time. I was teaching and we were very active in the college ministry at our church. We were surrounded by great friends and supportive family. There were normal stressors but life was pretty good.
Somewhere around 2003 or 2004 I first noticed some odd skin abnormalities on J’s torso. He claimed they were due to not tanning anymore and I dismissed them. We also both noted he was having more and more difficulty paying attention and staying focused on things. We also dismissed that. In the fall of 2004 he was in his last semester of college and was really struggling with focusing and so we got a medical evaluation and he was diagnosed with attention deficit disorder and started taking ritalin (or maybe it was concerta). It didn’t take long for me to note that the medicine was not working but we just assumed it would take time. He barely graduated from college although his overall grade point average in his major was 3.2!
J would be normal like 98% of the time and then would have these random “episodes” and then be back to normal. He was now working full time and in the army reserves and doing well. He was working on an army post and we both loved the military community. We discussed being more involved with the army or in military ministry.
In June 2005 we became parents. J loved having a son and showed him off wherever we went. He was involved with the care of his son as much as possible. However it didn’t take long for more signs of something changing in him to become apparent. I believe it was Christmas of 2006 some of J’s family noted some concerns. He was struggling to read out loud and his speech was more difficult to understand. He was having difficulty with tasks that had once been easier. In 2007 J decided to go to school to become an army chaplain. He would have been a great one. He was approved by the army chaplain corp and accepted into a seminary. He worked full-time, was a dad, took online classes and was a reservist. While taking online classes it was overly apparent that something wasn’t right. He was able to comprehend the material but he could not write sentences that made sense. He would tell me what he wanted to say and I would have to “translate” it into meaningful sentences. He loved what he was working toward but the work was too hard with whatever what happening to him.
In the spring of 2008 we discovered we had another little one on the way and J and I felt he could not keep on taking classes. We had started seeing a neurologist by now because he was having constant headaches. The neuro wasn’t as concerned with the headaches as he was J’s blood pressure. We had no clue it was elevated. J started taking atenolol to control the blood pressure with hopes it would also help with the headaches.
In November our second son was born. This time J was also thrilled but was tasked to help with our preschooler while I cared for the newborn. Things were getting worse and worse and yet there was still nothing clear or consistent going on. J started struggling more in work and had a series of fender-benders and his family was even more concerned with his decline. I was frustrated to say the least. He would be so normal and then would “flake-out” on me at the weirdest times. He’d say he was sorry and then promise to change and we were both baffled.
By now it was the spring of 2009 and we were shocked to find out that we were once again pregnant (our middle son was six-month’s old) and J was getting worse. He was really struggling at work and was even struggling in the reserves (which was such a big shock because he had been such a great soldier). In May of 2009 I spoke with our family doctor about what was going on and he ordered an MRI and sent us back to the neuro. Well we married the neuro that summer. He had neuropsychological testing, every blood test imaginable, a lumbar puncture and was now taking two different meds. We left that summer with no answers and yet something still was not right.
In October J was in danger of losing his job and we were trying to find out how to get some workplace accommodations. On the 23rd he came home from work and was so clear headed and said he wanted to go for a run. It was a beautiful fall day and the boys were contently playing and I sent him on his way. An hour later he came home a different man. He came in and asked for water and I very impolitely told him to get some. I then watched a series of attempts at getting water and was shocked to see that he could not figure out how to do so. He then fumbled around for a chair and sat down. He told me his hands were tingling. I asked him a few questions about his hands and feet but nothing was alarming. I then went about making dinner. A few minutes later I heard a commotion in the baby’s room. I found our then 4 year old sitting in the crib and the almost 1 year old crying sitting on the floor. I asked our 4 year old why he was in the crib and he told me daddy had put him there. I questioned my husband and he had no recollection. I was scared and furious all at once because J continued to laugh each time I questioned him. I called a doctor friend and described what was going on and he was probably dehydrated and needed to drink and rest.
Saturday morning he was not any better and this time I decided to take him to the ER. Imagine my surprise when the ER doc came and told me he had suffered a stroke. It wasn’t a typical stroke. No paralysis. No loss of speech. He was only 32 years old. I was six months pregnant. I was numb to be honest. I felt overwhelmed with needing to take care of him and our two children at home and the baby inside of me. His short term memory was a mess. He could remember nothing from after he went running. He must have been asked a hundred times what month it was. Each time the doc or nurse would tell him and then ask him again and it was never October to him. He knew he was at the hospital but was so disoriented the whole time.
He stayed for 4 days. There was a small hope the day before he left that the stroke had been caused by a hole in his heart but a transesophageal echocardiogram showed no hole. He had MRIs and an MRA and yet we left the hospital with no answers and orders for more meds and for follow-up appointments. I will admit it was scary for me to think that he had had a stroke and would obviously be at-risk for another stroke especially since we had no clue what had caused it. I was however now convinced that J had been having small strokes for quite a while.
(to be continued)
