Today is my 39th birthday. Today was also my first (and last) speech therapy appointment.
This birthday comes at a great time in my life! But that wasn’t always the case. If I look back on the birthday when my cervical dystonia was at its worst, I was 5 months into a 7-month long episode of chronic dizziness. I didn’t know if the dizziness would ever end or if it would become my new normal. I was hardly able to move my head to the right or to the left and my shoulders were in a semi-permanent shrug position. My neck and shoulders were full of hard knots and I was in so much pain. That was a really dark time for me. While I wasn’t suicidal, there were plenty of days when the only thing that got me through was knowing that one day I would die and I wouldn’t be bound to my earthly body anymore.
On this birthday, nearly 8 years later, I find myself feeling quite different in the same body. Through a combination of meds, daily massages, physical therapy, heat, and eliminating activities and movements that trigger episodes, I am so much better. While I celebrate today, birthdays are still tough for me. I know the reality of dystonia is that next year may not be as good.
Today also happened to be the first and last day of speech therapy for me. As I headed in, I was skeptical that anything could be done for my speech and memory issues. I was not surprised when I failed nearly every part of the evaluation:
*”Repeat back these 6 words”—Did it once, failed it the second time through, and five minutes later could only remember one of the words.
*”Given a series of numbers, repeat them back to me in the opposite order I give them.”—Yep, failed that one too.
*”Repeat this sentence back.”–So close, but failed to remember all the words in the sentence.
*”Identify these objects.”—Complete fail.
So yes, the tests revealed that I had some concerning memory issues. The good news, they are not a result of the dystonia. I keep reminding myself this is good news. It doesn’t feel so good at the moment. The bad news, my memory and speech issues are a side effect of taking high doses of valium for a prolonged period. Speech therapy is not going to change that. But since it is a side effect of the medicine, if I ever stop taking it, all memory issues should go away. Honestly, none of this was a surprise.
What it comes down to for me, pick your poison.
As I said, I am doing well right now. Why? A big part of that is thanks to a steady stream of valium in my body 24 hours a day. Memory issues are just one of several nasty side effects of taking valium. At my biannual appointment last month, my neurologist and I agreed that I am in a good place. He didn’t want to change anything about my treatment plan and I completely agreed. We also discussed the risk of taking valium long term, but the risk is worth the benefit. I am still able to work full time, my pain level is down, my dizziness has almost disappeared completely, my muscles are looser, and I have managed to keep botox out of my neck for another 6 months. However, the trade-off of taking valium is not remembering the names of the students in my classroom. The trade-off is calling the laundry basket a television and not realizing I said anything wrong.The trade-off is thinking so hard to form sentences that may or may not even make sense. The trade-off is strangers thinking I am drunk.
I don’t know what my future with dystonia will be. Hopefully, the future will yield the development of better medications, with fewer side effects. Or maybe even a cure. Until that time, I will continue my love/hate relationship with valium, be grateful to God for how my body is today, celebrate this wonderful birthday, and try to live each day with a good sense of humor.