Facing Hardship, Finding Humility

This week’s news reports that Celine Dion, the best-selling Canadian and French recording artist, has been diagnosed with Stiff-person syndrome, a rare neurological disorder that can be very serious.

This disease, which strikes literally one in a million people, causes a person’s muscles to go into painful spasms and stiffen up, and this can progress to the point where a person is unable to walk or move. Like other potentially debilitating neurological disorders, such as ALS, Multiple Sclerosis, and Parkinson’s Disease, a person can become a prisoner inside their own body, where their mind is healthy, aware, and thinking, but their body is rigid and non-functioning, leaving the person literally trapped inside their own body.

What a devastating, incurable diagnosis!

My dear father, Fred Blumenthal (זצ״ל) used to say:

Everything (illness, accident, and tragedy) is a one in a million chance, but there are a million and one things.

So Celine’s diagnosis, while rare, reminded me of my own dear mother, Gerda Blumenthal (זצ״ל), who, at the end of her life, suffered horribly from Parkinson’s disease. I remember being with her, especially over the last year, and feeling so helpless as this disease took its daily toll. And yes, rigidity was one of the symptoms that left my mom in terrible pain and virtually immobile. For many, many months, all we could do was support her in her daily functioning and provide pain medicine, which eventually didn’t even help anymore. As much as I loved my mom and wanted her with us, at a certain point, all I could do was pray that G-d would have mercy, grant her peace, and bring her home to Him in heaven.

So, even though I don’t know Celine Dion personally, I’m familiar with her music, and whenever I hear about someone with a neurological disorder or other terrible illness, I feel very upset and scared about how people have to deal with these unearthly problems that disrupt their lives and inflict untold pain and suffering.

Just watching the video of Celine announcing her diagnosis to the world this week and seeing her personal anguish took my breath away, as she said she was canceling her European tour, including her trip to Israel.

Recently, I read that we don’t choose pain (that’s part of life), but we do choose suffering. In other words, while we can’t avoid pain in this world, we can choose how we deal with it: do we stand up and fight it and try our best to maintain our composure and dignity, or do we give up and wallow in misery and defeat? In the case of Celine, she is admirably fighting the effects of the disease and trying to keep singing when she is able to.

Unfortunately, diseases like this don’t just mean pain, but I think at some point (or many points) there is deep suffering for the person as well as their loved ones in the face of inevitable decline and defeat.

George Washington said to Hamilton,

Dying is easy, young man. Living is harder.

And while it is true that life is hard (we all have our challenges), suffering from a horrible illness that chips away, piece by piece, at our human functioning until eventually the soul can scream out to escape its physical torment is undoubtedly a very tough way to die.

In the end, as my dad used to say, “No one leaves this world alive,” and indeed, life has a 100% mortality rate. All we can do is pray for G-d’s mercy and blessings and be there for each other in good times and, G-d forbid, in not-so-good ones.

Like Celine Dion, no matter how much fame, fortune, or power any of us amass in our lifetimes, none of these things make an iota of difference in the time of G-d’s eternal judgment of us. The only thing that matters and carries on are our good deeds!

When we are young and vibrant and the world seems so small in a way, we can tend to think we are invincible, but as we get older and more mature, we learn that everything we do in life that strays from the Almighty’s path for us has a price to be paid and a humbling before our Maker.