In sickness and in health

In sickness and in health

Ding! 3 am text from husband- “I woke up paralyzed on my left side…”

“Go to the ER.”

When I woke up two hours later I called him. He was still at home and his speech was very slurred.

“Call 9-1-1.”

All of this is complicated by the fact that my husband and I live 1500 miles from each other. His home is in the remote mountains of northern New Hampshire; mine is in a small Southern city. Where he lives is beautiful, if inhospitable in the winters, but there are no jobs and we can’t get internet. I need one or the other, and my Southern home has both, plus a kinder climate.

In this instance, our distance compounded the challenge. I called him again once I got to work and there was no answer. Working beats worrying, when answers are out of your control. I told my boss about what was going on and updated her as events unfolded. I learned that he had made it to the ER of our local rural hospital, where they diagnosed a stroke. It was obvious that I would have to prepare to make the 1500 mile drive to be with Jon for whatever his recovery required. I made arrangements for my classes and got my house ready to be left for an uncertain time.

I arrived at our New Hampshire home two days later- the drive itself is 24 hours, but this trip was a little longer since I took a route to avoid lake effect snows. My car is not suited for winter driving and it is not my favorite challenge. Even though I had called someone to plow, the driveway was snowy and the house was cold when I arrived. Our dog was happy to see me after two days of strangers coming to feed him and let him out.

The next morning Jon was transferred to an intensive stroke rehab facility 90 miles away over the mountains. If I can get out of the driveway, the drive isn’t bad. The roads are well-maintained and the scenery is soothing.

I continue to receive prayers and words of support from a wide circle of family and friends. These are what has buoyed me thus far. They also asked lots of questions- how could they help? What did we need? When was Jon coming home? How were we going to pay for this?

There are no answers.

Everything is uncertain and I am more aware of that with each unanswerable question. We will need a lot of help once Jon comes home. Until then I need the driveway plowed and help with cars- his is dead, mine can’t get out of the driveway. I need strong backs to move furniture to accommodate Jon’s limited mobility. I need to stay calm and centered.

STROKE REHAB

A stroke is a brain injury. I have often heard people say “He had to relearn how to walk, speak, etc” following a brain injury, but I never really understood what that entailed. It means creating and building new neural pathways between the brain and each muscle involved in a movement. Simple movements involve many muscles working together. Stroke rehab involves consciously moving muscles that were moved unconsciously pre-stroke.

Every stroke is different. Jon has strong language and cognitive functioning. He is paralyzed on his left side, with greatest impact on muscles and movements that were developed in infancy for reaching, walking, and grasping.

The area where the event occurs dictates the systems that are damaged. In Jon’s case, the mid-brain was affected. This is mainly an area where neural networks intersect and interact. Imagine an interchange where major highways come together. I envision “the mixmaster” south of Dallas. Now imagine that all of that collapses. The work of stroke rehab is to rebuild and reroute all of those roads and ramps. It takes time and is a slow process- until then traffic is a mess.

Jon has made tremendous progress- he can swallow now and can eat most foods, he can walk short distances with a cane and a spotter, he can transfer himself to and from a wheelchair. Jon has worked really hard in rehab. He is determined and motivated. His speech therapists, physical therapists and occupational therapists are top notch. Every little movement is a triumph. Progress is incremental and it takes its own time. And everything, every answer, depends on his progress.

It is miraculous that brain/neural function can be restored. The optimal window for taking advantage of the brain’s neuroplasticity is about three months. The top priority for Jon’s recovery is restoring as much as possible during this window. It is exhausting for Jon- his brain is recovering from an injury and he has to work it harder than ever, along with his muscles that he can’t feel. Once he can do a movement he has to perform it over and over to build the neural pathway- pinch his fingers, lift his arm, take a step.

I am fine. I have been keeping the house warm-carrying wood in every day and keeping the woodstove going. There is shoveling, plenty of it. Sheer force of will gets the car out of the driveway and on the road for the trip to visit Jon. I know that there is not much for me to do right now, but there will be later. I know that fretting and complaining (except about the driveway) won’t change anything. I have worked to save my spoons and protect my peace. I’ve been planning lessons and looking at student work remotely. I have already used up our internet ration so that becomes more challenging until it resets.

Yesterday I went to training for family members, ahead of Jon’s discharge. I learned how to spot him when he is on the stairs or walking, how to get in and out of a car, transferring to the tub. I also shopped for a wheelchair, a deep massager to help with therapy at home, a bath bench and a quad cane. I am certain I will become more familiar with adaptive supplies to fit our homes for Jon’s mobility needs as time goes on. I appreciate any advice on equipment.

COMING HOME

Jon will be home next week. It will be a challenge to adjust to the new space and less support from nursing staff. Still, he will sleep better in his own bed and he will be happy to see our dog. The dog will be happy, too, though I worry about his exuberance. Rocket is a big dog and could easily knock Jon over.

Our days will consist of Jon working to continue his progress, hopefully with in-home therapy visits. Work on either house is never-ending, so there will be lots of chores. I will continue to make lesson plans for my class.

I would like to return to my other home, but I can’t say when that will be. Jon is not up to the long car ride right now. I don’t think he could do a plane trip either, covid concerns aside. Our timeline is dependent on Jon’s continued progress. A few days? A few weeks? A few months? I can’t say.

WHAT CAN I DO?

Our dear friends have asked what they can do and how they can help. Please, friends, make sure your will and wishes are written down. No one wants to think about death and disaster, but having your wishes in writing makes navigating a disaster easier for your loved ones. This is important even if you have few assets, and it is especially important if you have young children. This is the third long distance family health crisis I've encountered in the last year. It is incredibly stressful, but having care directives in pace can ease some of that.

Please keep praying for us and Jon’s recovery. It may not seem like doing, but your prayers are what has kept me calm and moving forward. I can't discount its contribution to Jon's progress.

HOW CAN I HELP?

As we go forward there will be tangible ways we will need help. I know we will need help with moving things around- calling strong backs and pick-up trucks. We may need transportation help. We may need help with shoveling, yardwork, and work around the houses. Right now, we are good. We will ask when we need something and I hope you will still be available.

I need help finding a new used car. If you are the kind who likes scouring the want ads or hunting for treasure, I could use help locating a 2011-2013 Subaru AWD, low mileage (>120K), no rust. My Vibe has been a trusty ride, a real workhorse-but it is not the best for mountain winter driving. If I were at my other home, this is something I cold do, as cars don't rust there.

NEXT STEPS…

Covid has destroyed any notion I had of normal. We all are doing the best we can with the conditions we face. Yesterday was avoiding a plague, today we level up to stroke rehab in a pandemic. The normal I aspire to is my early morning prayer group, breakfast with my husband, time in nature, time together, sharing sunsets and stars. We live in the small moments.