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A Christmas of Joy and Hope

Tuesday 7 December 2010

A Christmas of Joy and HopeMCS America has an article from Sol's Place about "how to survive the holidays when disabled by a multi-system illness":

A Christmas of Joy and Hope

How to Survive the Holidays When Disabled by a Multi How to Survive the Holidays When Disabled by a Multi-System Illness System Illness

It’s been quite some time since the last “Sal’s Place” column. With the holidays upon us, this is a good time to share once again.

I have a thing for donkeys. I even learned a life lesson from a donkey; well, I learned two life lessons. Though it may sound fantastical, there is actual wisdom and hope that can be found in a short story of a donkey that fell into a well. The story goes something like this:

Donkey in the Well

One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey.

He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down.

A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up.

As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

– Author Unknown

The wisdom in the story is that life shovels “dirt” on us, all kinds of “dirt”. It’s our job to cast away the dirt and climb up to the top like the donkey. No matter how deep the well, we can get out just by shaking it off and stepping up.

There is a second humorous lesson in this story specifically for those who are shoveling the dirt at others. The lesson is that when you do something hurtful and try to cover your ‘ass’, it will always comes back to bite you.

The holidays bring warm memories of gatherings of the past filled with tradition, love, family, friends, food, and delight. When disability comes along and changes things, partaking in the festivities may be difficult, if not impossible.

The holiday “dirt” may take on the form of hurtful comments by well-meaning friends and family, loss of finances/dignity/credibility, loneliness, and isolation. Much of the “dirt” is also hurt dished upon us from loss of credibility, feelings misunderstood, and experiencing sadness and anger over drastic life chances and loss of life as we knew it.

In the face of accommodations challenges for gatherings, family and friends may dismiss a disabled person and say hurtful things like, “Don’t ruin my holiday with your fuss!” or “If you don’t want to come, just stay home!”

Instead of feeling hurt I always remember that, like the donkey, one day their selfishness will come back to bite them. This brings a smile to my face as I think of the humor. Then I step up on top of their “dirt” like the donkey did.

Here are a few tips that I have found helpful to cope around the holidays:

1. Start planning and shopping early by making a to do list.

2. Avoid the stress, crowds, exposures, and hassles of shopping by employing alternatives such as buying gifts online.

3. Take care of yourself by sticking to your normal foods and routine.

4. When entertaining, stipulate the rules on party invitations.

  • If no fragrances are allowed, provide safe clothing and shower access for guests to use when arriving.
  • If you don’t want to entertain all night, be sure to specify the time the party ends.
  • Ask guests to bring a pot luck dish to reduce energy expended cooking and cleaning up.
  • Ask guests to help out.

5. When going to a gathering away from home:

  • If dietary needs may not be met, bring a dish of food that you tolerate to eat and share with others.
  • Bring your own vehicle and make a short appearance at a gathering if you are unable to stay for the duration or your family wishes to stay longer.
  • If fragrances are of concern, wear layered clothing or a cover-up and bring a mask. A paraplegic would not show up without a wheel chair. You should not show up without your medical equipment either.

6. Plan to do nothing or lighten your schedule a few days before and after an event.

7. Just say no. It’s okay to pass on activities and outings, especially if accommodations will not be made for you. Your first priority is you.

8. Speak to your friends and family in advance to outline your needs and make plans.

9. Avoid making commitments you may not be able to keep. This will lessen the pressure you feel and you’ll win more points if you say maybe and no show than if you say yes and no show. And if you happen to show up in spite of “maybe”, everyone will be delighted.

10. Pace yourself. It’s better to enjoy only one activity than be in bed for two weeks because you attempted several activities.

Multiple chemical sensitivity (MCS) can be one of the most challenging disabilities around the holidays. Issues frequently arise with fragrances worn by guests and the air scenting devices used in some homes.

Here are ten positive and easy holiday ideas to accommodate people with MCS

1. Tell guests that the gathering is a fragrance free event for everyone’s health.

  • No perfume, cologne, scented lotions, scented aftershaves, scented deodorants, or scented hair products.
  • Provide a shower and unscented supplies in case guests forget.
  • Provide robes or cover-ups in the event clothing is scented.
  • Remove all air fresheners, candles, and other scented items from the home/facility.

2. Hold the event outdoors if weather permits. Fresh air reduces exposures.

3. Run an air filter to help reduce chemicals and scents in the air.

4. Open opposite windows for cross ventilation and air exchange. Turn the heat up if its chilly.

5. Ask the person with MCS what you can prepare especially for them with food sensitivities in mind. Other guests often love new twists on traditional foods and it can be fun for them to try new things!

6. Make an extra effort to include the person with MCS and make them feel welcome while treating them normally. Remember that even though they have MCS, they also have a life and other interests.

7. Do not tell a person to remove a needed mask or oxygen supply for the comfort of other guests. Allow the person with MCS to wear a mask or respirator and alert guests ahead of time so they are prepared. Decorating the mask like a Santa beard or adding a pair of reindeer antlers can be fun for everyone, especially the kids!

8. Watch for reactions to chemicals and be careful not to misinterpret the behavior of a person with MCS. Nervous appearing behavior, excessive talking, grogginess, repetitive movements, leaving the room, and other seemingly unusual behavior may be a sign of a reaction to the environment.

9. If a person with MCS does have a bad reaction, ask how you can help them recover and what can be done so they can rejoin the festivities.

10. Have fun!

Sometimes, despite our best efforts, those around us just don’t want to be bothered by our disability. In these cases, it is helpful to have a plan in place.

Rather than spending the holiday alone and feeling sad, connect with other disabled people online. There are various chat rooms and groups which have holiday events where they post stories, music, videos and other things that bring the holidays right to your computer.

Plan phone calls with online friends who share your disability. It’s fun to speak on the phone for a change and you will look forward to it each year.

A big part of the holidays is the food. So when you are alone, remember to hook up with a church or other charity that delivers meals to the homebound or provides a community dinner for those who have no place to go. There is often good food and festive music.

Many times, finances get in the way because medical costs take all available cash reserves. I remember being very lonely and hungry one year as I was standing on line at a free community dinner for people who were alone or had no place to go for Christmas. At the time I’d been struggling to obtain disability benefits and I had been going without many basic provisions.

There was a lot of food, but the servers were giving small portions of each dish since there were so many and they wanted to be sure they’d have enough for everyone. Not wanting to mix and match too many foods and become ill, I hesitated to ask for more of one particular dish so I could bypass the others. As I paused in front of the serving tray after getting one small helping, the server leaned over and asked me if I liked that dish. I looked at him meekly and nodded. The server reached over and snatched my plate back, filling it high saying it looked like there would be plenty left over and there was enough for everyone that year. I could barely contain my tears of joy! I was so happy to have a simply, delicious, and filling meal with my favorite holiday dish that would not cause a food reaction!

I was so used to be treated with anger, resentment, and disdain by others because of my disability. The one volunteer server, an angel to me, made my Christmas with his beautiful heart and simple kindness!

Even in a world full of challenges and “dirt”, there are people who care. It’s simply up to us to reach out and find them.

If health bars all else, we can just reach out to others like us for understanding.

Whether it be through your friends and family, or a total stranger who reaches out in kindness, may you meet an angel this year!

Merry Christmas!

The above was downloaded from:

PDF

A Christmas of Joy and Hope:
How to Survive the Holidays When Disabled by a Multi How to Survive the Holidays When Disabled by a Multi--System Illness System Illness (PDF, 305KB)

 


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