I was now two months into adjusting to my new medicines and was pleasantly surprised that I’d had so few side effects now! My debilitating nausea and vomiting were finally under control and I was finally out of bed and moving around more. This was all done within the safety of my four walls, where I was at least, able to maneuver about my home. I had ‘paths’ from one room to the next, with either walls or furniture to touch for bearings. If I did get dizzy, I’d have the wall to slide down or a chair to flop into for safety. I’d had enough broken bones! So, just as I’m beginning to feel ‘comfortable’ in my new/old life, time was approaching for my first appointment with the Physical Therapist.
On this trip to Dallas, I felt well enough to ride in the front seat but wore sunglasses to hopefully decrease the visual stimuli, it didn’t help. I felt hyper aware of movement now! I tried closing my eyes, but it felt like I was on a boat. I tried squinting my eyes, I tried laying my head on a pillow up against the window, and I tried wallering in a seated position but none of it worked. After about one hour, I’d had enough, now nystagmus began. Time for my back seat bed! Mike pulled over and tucked me in. I put on my sleep mask and hoped my eyes would settle down and it seemed to work! I hoped to drift off for a 5-hour ‘nap’. I meditated in an attempt to find my Zen place. I could feel every tiny movement of the car, every vibration, yet I drifted in and out of sleep. As I listened to my favorite band, Pink Floyd, I honed in on the lyrics to ‘Comfortably Numb’. I identified with the lyrics and longed to be comfortably numb myself…but dang, aren’t we there yet?
I woke up in the driveway of the hotel feeling very confused. I really had gone to sleep! Mike startled me when he got back in the car, but was in such a good mood! “So you decided to wake up? I’ve been trying to wake you up for the last 20 miles”! “I can’t believe I fell asleep”, I mumbled. He drove us around to our room (1st floor, thank God!) and we began unloading our car. I don’t know about others, but Mike and I always bring our own pillows (3 each), fans, and a sound machine with us when traveling, always! We look like we’re moving in for a 1-2 night stay, but that’s how we travel. There was good food close to the hotel, but I didn’t feel like eating ‘out’, so we ate to go food ‘in’ (was my poor husband ever going to get a good steak dinner?). We nestled into bed for the night well fed and feeling content.
Morning came way too early, but after some in room coffee, I felt ready to find out what awaited me. My Physical Therapist was in the same office as Dr. Roland, so this time, when we pulled into the circle drive, we knew where we were going. The same friendly faces greeted us, offering me a wheelchair (which I didn’t use, I had Mike!), offering an escort and a sweet “Good luck!” from a group of them. ‘Do they know something I don’t?’, I thought to myself. When we were alone in the elevator, I asked him, “What did they mean by saying good luck?”. He just looked at me. “I guess they mean good luck with your appointment, Margaret. What do you think they meant?”. Maybe I was being too sensitive. The elevator ride to the 9th floor was making feel horrible, my stomach was in a knot and my heart was pounding. “Oh! Mike, I feel horrible!” as I leaned on him. Of course, this is when we arrived and the doors opened.
I must have looked pretty pitiful, as the people getting on as we exited gave me an “Awww…you poor thing…” comment. Being embarrassed was no longer an issue for me. It was all I could do now to cling to Mike as we walked the long/longer/longest hallway to her office. The first thing I was aware of in the office was the carpet, it was a horrid, multi-colored, swirly carpet! I immediately felt dizzy and asked Mike to just sit me down and go check me in. He was back quickly I know, but it felt like forever. “You’re next in line Margaret!” Mike chirps happily. I tugged at his hand to sit down next to me so he could help keep me upright. I’d pulled out my barf bag (disguised as a gift bag) and had it at the ready, just in case.
I heard my name called by a woman’s very sweet voice, as I got up with Mike in tow and headed her way. Dr. Patti Blau PT introduced herself and had the nicest demeanor, I immediately felt comfortable. As we turned to head towards her office she said, “Oh no, Mr. Byrne, I’m going to talk with your wife for a little bit, and I’ll call you in later…”. As these words actually exited my mouth, I couldn’t believe what I said next,”I’m sorry, but you don’t understand! I don’t go anywhere without him!”. Soft laughter came from her and off we went, she walked, I shuffled along, watching my feet, and dragging my fingers along the wall. We sat down in her office/examine room/treatment area. It was a large space with an exam table, wall charts, and many, many books. She asked me about my nystagmus, how long I’d been sick and meds I now took. Then she asked me to lay on my side, explaining she’s be ‘moving my head into various positions. Some may not bother me at all while others might make me have a response’ (nystagmus). Oh boy! Now I was really excited, NOT! I wanted Mike to be here.
The first number of positions didn’t invoke a response, could I be well? Now I had to turn over to other side and do the same thing, the first was okay, but with the next position, HERE IT COMES! “This is it, my eyes are doing that crazy thing! What do you see? What do you think is going on?”. I couldn’t seem to stop myself. My eyes felt like an old fashioned Match 3 Slot machine, they were going around and around, then it felt like they just ‘clicked’ back into place. “Oh, I’m sorry but I’m going to be sick, I’m so sorry, I’m so…” I whined. My secret barf bag was nowhere to found, I’d left it with Mike! She slid the trash can to me. My first thought was, ‘I can’t throw up in front of you!’, but yes, it seemed I clearly could.
When I was finished humiliating myself, she offered my a box of tissues and asked, “So are you ready to hear what I found?”. Seriously? “YES! What did you find?” I blurted out. “No, wait! I need Mike in here!” I waited in her office while she retrieved him. He could tell I’d been sick, I wonder if the trash can between my legs gave it away? He sat next to me, took my hand giving me that ‘It’ll be okay’ look. Dr. Blau put it all so matter of factly, “Your Posterior Semicircular Canal is affected. You have Rotational Nystagmus as a result. You’ve become a ‘floor watcher’ and a ‘wall walker’. You’ve been dealing with this a long time Margaret, but I think I can help”. I had waited now over a year to get answers and I had so many questions, but my brain was trying to process there actually WAS help!
She spent over an hour with me, answering every question I put before her. This woman knew her stuff! We discussed my therapy would be a lot of Home Programs as I lived so far away and how difficult travel was for me. She picked up a stick wrapped in black and white checkered fabric. She hung it on the wall and I felt Mike’s hand on my back, “Where you going, Margaret?”. I was unaware that my body started leaning over as the fabric rolled down. “Oh my gosh! That print is making me sick!” I whined. Dr. Blau continued, “This will be your therapy tool. I will place a red ‘X’ in the middle. I want you to stare at the ‘X’ and move your head slowly back and forth, then up and down, keeping your gaze on the ‘X’. Ready to give this a try?”. Uh, well, NO! was what I wanted to say, but I gave it a go. Okay, I’m staring at the ‘X’ and here I go…I’m going…okay now, here I go…No, no, no! And I’m sick…”Well, that’s enough for today. I want you to do these 2-3 times daily. You should take your nausea medicine before you start. I will see you back here in one month”, she said in a chipper voice I didn’t appreciate. Had we driven to Dallas for a piece of black and white checkered fabric? I could have done this much (then why didn’t I?), but I was going to give my black and white therapy a ‘college try’. What would I have to lose?