I woke up last night to the sound of a loud “thump”. I sat up quickly in bed, heart pounding in my chest. I remember saying “Holy Shit” as I let my eyes adjust to the dark room, which was offset by the glow of a still playing t.v.

I looked down to find my husband of 16 years lying on the floor. He had fallen out of bed in his sleep. Again. This was the second time in the last 4 weeks. I asked if he was ok as he climbed back in beside me. He hit his knee going down, but it was alright. His head landed in our dog’s bed, so no issues there. We made a few jokes about me pushing him out, and then I rolled over and tried to get back to sleep. I had to get up early for work in the morning, and I hadn’t been sleeping well lately.

My husband BJ is a big guy. He is strong and he has a rough exterior. I have been told we make a very mismatched looking couple. But it was his heart that drew me to him in the beginning, (not to mention the leather jacket and “bad boy” vibes). It was his faith in me that helped me decide to go back to college and get a degree. It was his loyalty and devotion that got me past my bad first marriage and taught me what love was supposed to look like.

When BJ fell out of bed the first time, about 4 weeks ago, my reaction was pretty much the same. A shot of adrenaline from being woken up so harshly, concern that he was ok, then a few jokes about what had happened. That time, BJ told me he had a dream he was fighting a cougar in our backyard. He went to do a spinning back-kick and literally spun himself off our bed. It was funny then, and I still think it’s funny now.

But last night, things didn’t seem so funny. I laid awaking worrying why my guy kept tumbling out of the sack.

The past few years have not been easy for BJ, or for me. About 4 years ago, BJ told me he was experiencing numbness in his feet and it was traveling up to his legs. But he is stubborn and he insisted it was a result of back issues he’s had since his furniture delivering days.

But over the next few months, his symptoms got worse. His legs went completely numb and he started to have noticeable tremors in his hands. Then the ice-pick headaches started and it was time to see a neurologist.

An MRI revealed lesions in his brain. The neurologist told us it could be nothing, he could have been born with them. I remember we made jokes about his mom dropping him on his head. We made an appointment for a follow-up MRI in three months, and we tried to go on as before. He was doing better and we were feeling pretty good about things when it was time for the follow-up MRI. The results were not good.

A phone call from a nurse at the clinic gave us the bad news. BJ’s lesions had grown in size. We were looking at a brain tumor and possible cancer. We were devastated. We put a call into his neurologist looking for answers, and then we drove down to the river by our house and cried. But the story doesn’t end there. The nurse “miss spoke” and the lesions looked stable. No one could tell us why he had them or what was causing his symptoms, but it wasn’t cancer and he didn’t have a brain tumor. We were relieved.

As the months went on, BJ’s symptoms came and went. Sometimes he felt great and sometimes he couldn’t muster the energy to get out of his chair. This went on for about a year, until one day, the symptoms got very bad.

My husband ended up in the ER for 7 days enduring MRI’s, CAT scans and a spinal tap. He was having trouble walking, swallowing and he was seeing double. The images revealed new lesions, with one particularly nasty one sitting on his brain stem or PONS. We named that lesion “Yag”.

Once again, we were told he had cancer and that it had metastasize to his brain. They set him up for a full body scan to locate the cancer so they could begin treatment. Guess what? No cancer. They ended up pumping his body full of IV steroids and the next day they sent him on his way. He was given an appointment with a “top” neurologist in our area to try and get a diagnosis. We were not optimistic at this point.

The neurologist we ended up seeing turned out to be wonderful in his honesty. He said no one in this area was qualified to treat or diagnose BJ, and he would refer us to a larger clinic that had more experience with such complicated symptoms. So off we went to John’s Hopkins to meet with one of the best of the best and his team of experts.

6 Months later leads us here, in my bedroom, with my husband back to sleep beside me. We still don’t have any answers. BJ managed to stump even the experts at Johns Hopkins, so we still don’t have a diagnosis. The latest tests have shown that his older lesions have healed, leaving scar tissue in their wake. However, new lesions have shown up to take their place. He has symptoms of MS and Parkinson, but he doesn’t HAVE MS or Parkinson. What he has is another referral to a specialist, this time with the Mayo Clinic in Minnesota. We are heading there next week.

I can’t help but wonder if him falling out of bed is another symptom of his disease. Is his brain unable to sense the spacial relationship between his body and the end of the bed? Is this a new symptom? Is he getting worse?

I look at the clock, it is 4:30 a.m. I need to get up for work in a few hours, but sleep continues to elude me. For now, this is my “new normal” and I need to keep going. I’m hopeful tomorrow will be a good day.