Evan has been urging me to write since April, especially about the surgery and unexpected results. You have all been so supportive this past year during chronic spasms that left me housebound and eventually bedridden. You are what kept my spirits up. Then, I took all that love, rolled into the Operating Room with me… and disappeared.

Four days after my surgery, after spending a lovely hour in the garden, Evan and I started in on our bedtime routine, marveling at how normal it all felt. For one beautiful spring day, we had our lives back.

Then, my arms tensed and shook. Our eyes met. This could not be happening. Could. Not.

The spasms have been back for 3 months. To combat them, we have been using oral baclofen. You know, the sedating medicine that keeps me in bed 24 / 7, robbing me of precious time writing and being with Evan? That’s been particularly tough on me. We have also repeatedly experimented with increasing the dose of baclofen the pump pushes into my spinal cord. I will have another bump in a few days. I truly believe this will be the final increase. I have to because, as Eleanor Roosevelt said, “When you reach the end of your rope, tie a knot and hang on!”

Where am I now?

I just had a great clinic. My leg spasms are gone – arm spasms are more stubborn – so I can breathe easier. As a result, I just got my highest breathing scores in a year! They went up 27%! Confetti! I need to have my chair basically restructured as a result of increasing disabilities. I need a new back with guards on the edges so I stop slumping left, arm trays to keep my arms from sliding off, lower or deeper slanting foot plates so my pointy feet can rest safely and comfortably, and a controller on the back so Evan and other caregivers can drive me. That’s a lot, I know, but I am certain these modifications will double my chair time and improve my comfort and safety.

Once this is done, I will feel comfortable getting out of bed more and doing outings, maybe to the art museum! I don’t know how long it will take to reform my chair, but I have patience and enthusiasm!

What have I done with my experience?

“You don’t have to be totally comfortable all the time.” This has been my mantra for a while now. Unless something is becoming painful or interfering with what I am doing, I don’t have to give it attention. Is everyone really walking around 100% comfortable all of the time? Of course not, but it doesn’t hold people back. Pre-ALS, the most uncomfortable I have ever been was dancing ballet. My toes were bloody and mangled to the point where I couldn’t have the the weight of a blanket on my feet at night. I actually used my Beatrix Potter baby quilt. Aww!

The discomfort of wearing shoes during the day didn’t stop me from going to school, work, or out with friends.

I have decided to treat fatigue the same way I treat discomfort. Teaching left me exhausted, but I didn’t let that be a reason to stay in bed. I have to face the fact that I will probably never be energetic as I was. The fatigue is a weight on me, but it is a weight I can function with.

Finding my sunshine and how you can find yours!

In a recent conversation with Melissa about the frustration of life after surgery, she said, “Maybe this is more of the disease’s ups and downs.” I realized I had been waiting for the full days that would be ups, but depending how the baclofen pump experimentation goes, it could be a long time before I experience that. I also realized that I am having ups right now, though they’re only for a few hours. They still count. In those hours, I can have family and friends visit, take a trip to the dog park, maybe even head downtown. I just have to balance my “sunny ups” with listening to my body. I am learning that I need a day to recover from the visitors and outings, but that doesn’t diminish the joy that I find those active days. It just means that I have to be resilient and creative on my down days. I may find passive joy those days by bing watching a show I love or listening to a funny podcast. The ups and downs are about not letting the hours I sleep from sedating medicines rule my schedule. It’s about letting joy, whether on a down day or an up, define me.

The Lesson:

Joy is whenever you look for it! Even in scraps of minutes or an hour. Let that be your focus, and your resilience will astound you!