😊 Two Further Small but Important Positive Steps

I wrote recently about leading the prayers over the New Year weekend. That achievement deserves to stand on its own. It brought me enormous joy, satisfaction and fulfilment.

Alongside it, there have been two smaller positive steps (Thank G-d). Neither changes the direction of travel. Neither alters the reality of living with a progressive neurological disease. Both come with caveats.

But both matter.

Progressive illness can make life feel like a series of things being taken out of service. Adjustments are made. Freedoms shrink. Risks increase. The list of things you no longer do gradually becomes longer than the list of things you still can.

Every so often, something moves in the opposite direction. Something mothballed comes back into use. Technology enhances a capability you feared you might lose.

Both have happened recently.

The Return of the Wheelchair

The first is my electric wheelchair.

A few months ago, I stopped using it entirely. Freezing episodes, poor control and an uncomfortable number of encounters with walls and my own feet convinced me that the risks outweighed the benefits.

I even tried to sell it twice. I genuinely believed it had been mothballed permanently.

My condition has not miraculously improved. What has changed is the support around me.

I now have a full-time carer who understands the remote controls and knows how to help me operate the chair safely.

I have also imposed some strict rules. Whenever I stop, I immediately engage the electric brake. Accidental joystick movements had become too common.

I only use inside because with the leg stand down it is too tight and indoors I can do without it.

I have dramatically reduced the speed too. I once used settings four or five. I now use speed two.

I move with all the urgency of a mildly motivated tortoise.

But slower is safer. And safer means usable.

I still use the chair selectively. I avoid it when I am tired. I do not use it on Shabbat because I cannot control the speed setting safely. There are many situations in which it remains neither sensible nor practical.

For now, though, a very expensive piece of equipment that I thought I might never use again is back in service.

That really matters.

An Impulsive Purchase That Worked

The second step involves technology and a purchase made somewhat impulsively, much to the amusement of my children.

I recently upgraded to the latest iPhone. My justification was that the microphone on my previous phone was no longer detecting my voice properly. I tried cleaning equipment. I tried cleaning apps. Nothing made enough difference.

Could it have been repaired? Possibly. Could I have investigated more options before buying a new phone? Almost certainly.

The purchase has nevertheless proved remarkably beneficial.

I rely heavily on dictation. Speaking accurately and efficiently is becoming increasingly important. I use Wispr Flow, an AI-powered dictation tool. Combined with the new phone, the improvement has been astonishing.

My dictation is faster. It is more accurate. Corrections are less frequent. Most importantly, I can dictate quietly for much longer without exhausting my voice.

The software may also have improved significantly. I understand almost nothing about how it works. I only know that it does.

As I write this, I am speaking comfortably and accurately. This technology is helping me communicate for longer. With less fatigue. With less frustration.

In a world where communication is becoming harder, that is no small thing.

There is another side to the story. Disability is hugely expensive.

Wheelchairs cost money. Phones cost money. Software costs money. Adaptations cost money. Care costs money.

Financial resources are finite. I intend to write more about that reality in a future post.

For now, I am simply acknowledging that one expensive decision has delivered benefits I neither expected nor fully appreciated.

Counting Blessings Carefully

There are less positive developments in my life too. Some remain uncertain. I prefer not to write about them until the position becomes clearer.

That is the reality of progressive disease. There are always new corners ahead. Not every corner contains good news.

But good news still deserves to be noticed.

Over the past fortnight, I have regained the use of my electric wheelchair and discovered a technological setup that has transformed my ability to dictate.

Neither step is guaranteed to last. Both are fragile. Both are conditional.

Both are positive.

Nothing compares with the feeling I experienced when I led the prayers on Saturday. I have already written extensively about that.

These two steps are different. They are helping me write this blog at this very moment. More importantly, they may help me continue writing on an ongoing basis.

Writing matters enormously to me. Mentally. Physically. Emotionally.

Anything that helps me continue is worth celebrating.