Adjusting to Our New Normal

Learning how to balance life as a caregiver and husband can be delicate. I recently mentioned that my wife, Jill, and I attended a symposium for Huntington’s disease earlier this year. I learned some valuable information that day, including that Jill may one day experience changes in the way she processes things. She may become angry about things that aren’t real. She may experience paranoia, which can manifest in multiple ways. She can even experience sensory hallucinations.

She hasn’t been experiencing any of these symptoms, but a recent trip to a foot doctor and a physical therapist made me understand that I am not the only one concerned about them.

Jill has sensory issues. She’s not someone who loves being touched, but it’s even worse when it comes to her feet. I am someone who has sensory issues, too, but unlike Jill, I am a sensory seeker, and thus love to give her massages. However, I go out of my way to avoid rubbing her feet.

So, when she recently asked me to make an appointment with a podiatrist, I knew she must be in agony. X-rays revealed she had a large, sharp bone spur that was digging into her Achilles tendon. It was something she has been dealing with for months and trying to avoid, mainly because she knew the first step in the healing process would be a form of torture for her: physical therapy.

It was unsurprising that she was a nervous wreck before her first appointment. I just assumed it was her sensory issues. While we sat in the waiting room, she joked that I may need to stay by the door and block her exit in case she “made a run for it.”

That was funny, but part of her meant it. After her appointment, she told me on the way home that she really liked her physical therapist. She was happy to find someone she felt comfortable with.

I was hoping her stress levels would go down a bit during her next appointment. But that wasn’t the case; in fact, her anxieties kicked up to an even higher level.

As we waited, I asked her what was wrong. She made a joke about not wanting to be near other patients in the open area where the physical therapists worked with their patients. I kept watching her face. She did not look like the woman that deals with her issues and keeps marching forward. She had a look that I haven’t seen before. It was the same look a cornered animal expresses right before it bites. Then, as the physical therapist’s assistant walked toward us, Jill stood up like a coiled spring under immense pressure.

The young woman said, “I’m going to get you on the bike and warm up.” That was it. Jill said, “Nope, I’m good, thank you.” She was shaking. Then she bolted. The assistant didn’t know what to say or how to react. Honestly, neither did I. All I could do was mouth the words, “I’m sorry,” to the woman and rush out the door.

When I got into the car, Jill was inconsolable. She was so upset I just wanted to hug her. I told her it was going to be OK. All she could say was that she was sorry. She was sorry she couldn’t control the anxiety. She has always had issues, but she could overcome them through sheer will. This time she couldn’t, and she was sorry.

As we drove away, Jill grew quiet and receded into herself. As I held her hand for comfort, I looked at her face and noticed the worry on it. We talked about it later.

She was thinking about the “what if.” What if this is bigger than just her normal reaction? What if this is her new normal? What if she had begun processing things differently, more intensely, and with different perceptions than normal?

What if this was our new normal?

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.