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Finding Strength and Hope in Time of Uncertainty

April 1st, 2020 | by Pamela Simon | Comments Off on Finding Strength and Hope in Time of Uncertainty


Finding Strength and Hope in Time of Uncertainty

 

Dear Friend,

First, I hope this newsletter finds you and your family safe and healthy. In my last newsletter I mentioned that I would be off for two weeks due to spring break. I, like many of you, needed a little more time to adjust to a temporary new way of life.

I admit, I also needed time to let the enormity and reality of what we are facing sink in. Sadly, it’s not the first time I’ve faced dire news. It’s been a little over two weeks since most of the nation has shut down and as I look back I realize my emotions over the past two weeks mimicked what I experienced when I first learned my husband, Larry, was diagnosed with myelodysplastic syndrome (MDS).

My first reaction was shock and disbelief. Is this really happening? How did this happen? There are so many unanswered questions. How long will this last? And, what does it mean if you live in a state that has issued a stay at home or shelter in place order?

After shock comes determination. We can do this!

More than ever, we all need perseverance, stamina and hope. This is where I look for guidance. Of course, the first person who comes to mind, the one person who I trusted greatly and never let me down, my late husband, Larry.

Even if he’s no longer here, I continue to draw from his experience and know that, no matter what, we will get through this.

Almost ten years ago, April 9, 2010, Larry learned he had a serious disease and was given instruction from his doctor that he needed to make an appointment with the oncology department at Mayo Clinic to discuss a bone marrow transplant. The first available appointment was in May. Of course, we did what most people did during this time, we googled as much as we could about the disease and what a bone marrow transplant entailed.

Isolation. That was the one word that frightened Larry more than anything. And it kept popping up.

Larry was a very active person. He golfed, rode his bike, fished and took an active role in coaching the boys in sports. The worst part of the isolation for him was not being able to see his kids. No one under the age of 13 would be allowed and at that time, all our boys were under the age of ten.

After hearing confirmation from the doctors at Mayo Clinic and a second opinion from Johns Hopkins, Larry believed having a bone marrow transplant was his only hope.

Preparing for a bone marrow transplant, Larry knew, he wasn’t only fighting his disease physically, but also mentally. Before he entered the hospital he and I discussed and planned for some key coping mechanisms.

The past few weeks I’ve been in awe at the similarity of implementing the same coping techniques while we stay at home for an indefinite period of time.

None of us know how long this will last, but rest assured, we are in this together. No one is alone. And I pray you find the strength and perseverance to get through this difficult time. I have complete faith you will.

I offer the following coping mechanisms that Larry implemented ten years ago and I’m following today. Please, reach out to me if you have further questions or other coping skills you would like to share.

Limit media and negative stories

Once Larry made the decision to proceed with the bone marrow transplant, he stopped his research on internet. Until that moment, for every positive story he read, ten negative stories popped up. To stay positive, he wanted to focus on positive stories.

There are many sad stories today and while I certainly don’t advocate for burying your head in the sand, however, if hearing the stories are having a negative impact on your mental health, it may be time to take a break from listening to them.

Credible sources

Along with keeping a positive attitude Larry made a conscience decision to get his information strictly from his doctors. There is so much great information on the internet but also some misleading information. He felt it would be counterproductive at that time to constantly question the doctor’s recommendations. He was putting his life in their hands and he had to trust the protocol they were recommending.

The same holds true today. I’ve made the decision to listen to the experts and heed their advice: social distancing, wash hands and limit contact, if any, with people who have a compromised immune system and the elderly.

Stay connected

Again, Larry’s biggest heartache was not being able to see his children. Thankfully we have technology. Ten years ago, Apple introduced the iPad. Larry was frustrated at the irony. He hated paying the price for brand new technology, but under the circumstances, it would be his lifeline to communicating with his children. He grudgingly forked over $650 to gain a sense of control over his life!

He was able to access the internet, download movies and best of all Skype with the kids each evening. Facetime, zoom, none of these had come to the market yet.

Today, we are so fortunate to have the technology we have. I’ve been able to Facetime with family and friends. My kids have had lessons via zoom. They are playing video games with family and friends and chatting with them as if they were in the same room. People are hosting gatherings via zoom, it’s fantastic. Social distancing is NOT social isolation.

During this time, I would encourage you to check in on family and friends on a regular basis, especially to those who are living alone.

Laughter is the best medicine

An earlier post, It’s OK to Laugh, I shared the benefits of laughter. Even during a crisis, we need to find something to laugh at, laughter is the best medicine. Larry was a movie buff (wonder where Charlie gets it) and he loved most genres. But after his diagnosis, he focused mostly on comedies. There was nothing better than laughter to reduce the stress and tension we were living with. Family and friends would call and tell him jokes or send him jokes via email.

Currently, to lift my spirits, I’ve been watching funny videos. It you’re not on TikTok, I would highly recommend joining. There are so many hilarious videos, especially the animal videos, that after a few minutes of watching I find myself cracking up with laughter.

There are some great comedies out there as well. With access to Netflix, Hulu, Amazon, and many other streaming channels you would be hard pressed not to find a comedy.

Disconnect from electronics

 While we’re very fortunate to have technology that allows us to work from home and stay connected to the outside world, it’s important to disconnect from technology and work on connecting with the people in your house.

I’ll admit, besides doing their schoolwork online, my boys have been playing A LOT of video games. Under normal circumstances leading experts would recommend limiting electronics with appropriate guidelines for each age group. Yesterday, I heard one expert state during this crisis it’s ok to let up on those guidelines (which we have in our house!), but still find a way to connect as a family.

My kids love to play board games, but even they need some nudging. And that’s what I did this past weekend. So, we brought out the monopoly game and set it up in the dining room. It’s a game that we’ll play on and off for a few nights. We also play card games and currently have an ongoing game of Rummy 500; this was a game I played with my own grandmother! It brings back some great memories of prior family gatherings.

Get physical

When Larry entered the hospital, he was told that getting out of bed and walking around his room or nurse’s station was very important.

The same holds true for all of us. Weather permitting (and following your state guidelines) most of us can still walk outside. Again, technology has created another platform to allow for exercise. Many clubs are hosting workouts that can be joined via zoom or they are posting on their website or you tube channel workout videos.

Since I’ve been working from home for years, I know too well the draw and dangers of sitting at my desk all day. So, even if you don’t have an exercise regime in place, if you’re working from home, set your timer if you have to, but make a point to get up every hour or so and walk around your house for at least ten minutes.

I learn from past experiences to bring hope to the future

While we face the uncertainty in front of us, I know we’ll get through this.

How do I know?

Walking beside Larry as he fought his disease, humbly accept his circumstances and make decisions based on hope for a better life, taught me never to give up! He eventually lost his battle, but he gave it everything he had.

 

That’s what I intend to do. Be grateful I’m able to remain in the comforts of my home, with my boys, and face each day with determination and perseverance.

No matter how dire the circumstances, each morning brings a new day, a renewal of hope.

Let’s hope the time needed for social distancing is short, if not, keep the faith, and follow the recommendations given above to help your physical and mental well-being.

My thoughts and prayers are with you all.

I’ll leave you with one prayer that I’ve recited numerous times, the Serenity Prayer.

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Many Blessings,

Pam




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