First Person Perspective: Holidays Bring Mixed Emotions

by Rick Raker on Wed, 2013-12-11 16:15

Finding a way to focus on the positive — even in the face of ALS

Many of us have mixed emotions during the holidays. I can remember as a child and young adult mostly enjoying the festivities, holidays and celebrations during this time of year. It wasn't until I was married with a family to support that the holidays began to lose their luster.

Rick Raker at home in Hawaii.

I realized how hard my mother and father had to work in order to make our holidays special. I began to question the blatant commercialization, hustle and bustle, obligations and forced traditions. However, I was able to overlook these minor irritations, and embrace the holidays for the sake of my son, wife, family and friends. Doing so made the holidays a special time for me, as well.

But now, in my current situation living with ALS for the last seven years, I find that I have extreme highs and lows during this time of year. My friends, caregivers and doctors assure me that this is normal — everyone has good and bad days. I'm sure it's a matter of perspective, so I thought looking back and reminiscing about all the things I used to be able to do during the holidays might be therapeutic.

Trip down memory lane

Bringing holiday cheer to others make all the difference. We usually invited friends and family over for Thanksgiving, Christmas and New Year's. I threw myself into cleaning the house, decorating and helping with the cooking. We played games, exchanged gifts and had lots of laughter. There's nothing like the joy of being with people you love during the holidays, and then the peaceful, soft, quiet of the house well-used after the parties are over. Christmas morning and New Year's Day were reserved for our small family only. We tried hard to wrap ourselves in the love we shared with each other.

Sometimes the quiet times are the best. I am one of those that actually enjoyed writing and reading Christmas cards. I would include an annual end-of-the-year wrap-up letter, usually complete with photographs and pithy remarks. Sending the annual greeting helped me to remember how lucky and blessed we were as a family. Watching the news during the holidays was always difficult — the continuous war, natural disasters, poverty. I strived to understand our privileged place in the world as U.S. citizens. I volunteered when I could at the homeless shelter or immigrant center, and even dressed up as Santa a couple of times. We made what charitable donations we could afford.

Reflection during the holidays is an important endeavor. As a small family, we tried to perpetuate some family traditions. My wife cooked special Japanese food for New Year's Day. While I enjoyed decorating for Christmas — hanging stockings, putting up Christmas lights and setting up the manger my grandmother gave me. Even though we live in Hawaii — the land of palm trees, we still purchased a real Christmas tree each year. I remember paying over $100 for a tree one winter in the 1990s, and a week later, all of the trees on the island were sold out. I haven't checked, but I'm sure they are even more expensive today. Definitely crazy, but it was worth it. One of my favorite family traditions was the practice of opening one present each on Christmas Eve — this was one tradition that was easy to continue.

Family traditions, however small, bring peace and stability. I even got into the shopping mood, occasionally joining the masses at the mall. I struggled to stay within budget and came home exhausted. I told myself not to, but I can even remember being pulled under the Black Friday discount spell. Looking for that special gift was a challenge, but when I was successful, the smiles or laughter that followed always made it worth the effort. Receiving was fun, but nothing brought as much joy as giving.

Gift-buying and giving can really be lots of fun! "So, why the mixed feelings?"

Like a ton of bricks

It really hit me hard this year on Thanksgiving day. There was no party this year. No friends or family visiting. Everyone was busy, and we just didn't make any real effort to plan anything.

My wife was exhausted from work and from her duties as my caregiver. She needed a break. She did make a gallant attempt to cook a small turkey, mashed potatoes, stuffing and gravy for us. My son slept late, also tired from work, and he had to leave early because Black Friday now begins on Thursday. He was one of those retail workers on the job from Thursday evening until early Friday morning so that the rest of us could get a jump on our Christmas shopping and the big box stores could start ringing up the profits.

I fell asleep during the Macy's parade, the National Dog Show and all three of the NFL football games — since when are there three? There used to be just one football game on Thanksgiving. I drooled more than usual. And then, the thing that really brought me down was the fact that I could not eat more than a small bite of turkey. The mashed potatoes and stuffing went down fairly easily, but I soon became full and I just did not have enough energy to chew. Swallowing was hard enough. When I choked and gagged, I saw the tears in my wife's eyes, and I cried as well.

I felt sorry for myself. I felt sorry for my wife. I felt sorry for my son having to work. My once semi-mixed feelings about the holidays, suddenly turned dark and depressing.

I guess I could go on and on about the loss I feel. The loss of energy, the loss of mobility, the loss of independence and freedom, the loss of financial security, the loss of time with friends and loved ones. However, I know the infinite downward spiral this road can lead to if you allow it. Negativity breeds more negativity. Depression is never too far away.

Focus on the positive

Well-known author and inspirational speaker Rita Schiano sums it up quite well: "Talking about our problems has become our greatest addiction. Break the habit — talk about your joys."

So, I vow to finish this rambling about holidays past and present with a focus on the positive.

There's still Christmas and New Year's to come ... I promise to be joyful. I will strive to be grateful. I will count my blessings. I will share my love with my friends and family. I will sincerely thank my caregivers. We will have a small party with friends and family. I will enjoy soft foods that are easy to chew and swallow.

We will decorate the little artificial Christmas tree and place it near my hospital bed. My grandmother's nativity scene will come out of the closet, and I will ask my son to set it up in the living room.

I will shop online and give the most important people in my life a few silly gifts. We will make a meaningful donation to a local charity, and I will send holiday messages through Facebook and email. I will watch football and maybe even a Christmas special. I will make an effort to create new memories.

Richard K. Raker is a freelance writer living in Honolulu, Hawaii, with his wife and son. He received a diagnosis of ALS in 2006. He has self-published a memoir, A Remarkable Life, Lived by an Ordinary Person, and other stories. He has a blog and Facebook page (Richard K. Raker). Be sure to read his From Where I Sit article titled To My Caregivers: I Accept Your Love in the October-December 2013 issue of Quest magazine.

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