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Living with ALS: This holiday, you don’t know what you’ve got ’till it’s gone

CHARLOTTE, NC: Folk singer Joni Mitchell wrote in the song Big Yellow Taxi “you don’t know what you’ve got ’till it’s gone.”  Perhaps a better way to look at it is “appreciate what you have, before its gone.” In 2003, during my pre-ALS life, I was living in Saudi Arabia during the Christmas season. In that particular year, Christmas and Ramadan roughly coincided.

I purposely decided to go to Saudi Arabia by doing as little background research as possible because I did not want to have any preconceived biases before I arrived. So I entered the desert kingdom with only the basic information that was necessary to begin my new life.

By the time Christmas rolled around I had been living in the Kingdom long enough to have accumulated more than enough personal prejudices against Saudi lifestyles to last a lifetime. Despite that, I was still naive about many aspects of Islam and one of the things I wanted to accomplish was the personal comparison of Christmas with Ramadan.

To my untrained eye, Saudi Arabia was a land with only six colors

Desert brown, sky blue, palm tree green, thawb (men’s clothing) white, abaya (women’s clothing) black and ghutrah (men’s head covering) red. To this day I am uncomfortable at home on a completely blue-sky day because for eight solid months in Saudi I never saw a cloud.

appreciate what you have, appreciate, Christmas, Ramadan, Saudi, Saudi Arabia

Clouds are rare, camels are not (Photo: peabod)

For me, the monotony of day in, day out sameness was a difficult adjustment.

Saudi Arabia has some fabulous shopping malls.

Though Saudis reject many aspects of Western lifestyles, they typically want the best of anything that money can buy. Not only wanting it, they are willing to pay for it.

When it comes to clothing, especially with Saudi women, expensive or luxurious garments are a side of the culture that Westerners rarely see.

appreciate what you have, appreciate, Christmas, Ramadan, Saudi, Saudi Arabia

Sana and Salah — Sana brought a Christmas card to my office (Photo: peabod )

My goal was to observe how Muslim society deals with their religious traditions compared to our own. I had already had one shocking moment of revelation one morning when Sana, a female Muslim colleague, came to my office door and presented me with a bona fide Christmas card.

To this day I have no idea where she got it, although I do know for certain that it was not in Saudi Arabia.

Ramadan and Christmas are not really comparable in most ways, other than being major celebrations.

Ramadan, for example, lasts 30 days and it is based upon a lunar calendar which is considerably shorter than our Gregorian calendar in the West. Therefore Ramadan changes when it occurs each year as opposed to the specific date of December 25th.

In addition, Ramadan is a time of fasting each day from sunrise until sunset. Once the sun dips below the horizon however, all bets are off and food appears in abundance until the new dawn.

Ramadan, Mosque, Saudi, Saudi Arabia

In Saudi Arabia mosques have no decorations (Photo: peabod)

During the fasting period, Muslims must refrain from eating, drinking, smoking, and sex among other things. In Saudi Arabia, while Westerners are not subject to the same rules, if they are seen doing any of those things in the presence of a Saudi citizen, they can be deported immediately with no questions asked.

I don’t know why I was stunned when I arrived at the mall. I knew that I should not have been, but somehow my lifetime of American holiday traditions had instilled in my rationale some sort of strange holiday amnesia.

Throughout the mall, it was business as usual. Why I expected anything different still eludes me. There were no decorations. The mall was devoid of festivities. There was no music, seasonal or otherwise. Everything was precisely the same as it was on any other day of the year.

The Sounds of Silence

For me, the most notable aspect of what I was experiencing was the total absence of music.

Like many Americans, listening to a month of Rudolph the Red-Nosed Reindeer or Jingle Bells or White Christmas had always run its course well before New Year’s, until that day in 2003.

On that day “the sound of silence” hit me squarely between the eyes and suddenly I was overwhelmed by feelings of sadness.

Saudi, Saudi Arabia

Interior of the Saudi ARAMCO Oil Exhibition (Photo: peabod)

An inexplicable emptiness filled my soul. I longed to hear I’ll be Home for ChristmasChestnuts Roasting on an Open Fire or Frosty the Snowman. Anything.

Each year at Christmas our church holds a carol service of Biblical readings and Christmas music. It’s a hugely popular event for which people arrive early in order to get a seat.  We enjoy the fresh pine aromas, the candlelight, the choirs, and the handbells but still, for me personally, the service was just a little too long. Just too much of a good thing.

Too much, that is, until 2003 when I realized just how much that service had influenced my life…and now, I missed it. I longed for it.

It made me wonder how any society, any culture, any civilization could survive without the inspiration and joy of music.

Today I am confined to a wheelchair. I will never walk again. For all I know, this could be my last Christmas.

appreciate what you have, appreciate, Christmas, Ramadan, Saudi, Saudi Arabia

Let the joy of Christmas wash over you (Courtesy: pixabay)

Our Christmas carol service takes place later this week, and nothing will keep me away. You see, I used to be one of those people who didn’t “Appreciate what you have until it was gone.”

Life in Saudi Arabia and living with ALS have taught me a valuable lesson; savor every precious moment of every day, enjoy each of them to its fullest and may the spirit of the season wash over you to fill your soul with music.

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