Early one morning, we heard noises coming from the roof of our condominium; men were talking and then suddenly there were ropes tumbling down outside of our window. My wife sleepily stepped out onto the lanai and looked up.
"The painters are here," she said, closing the glass sliding door and coming back into our bedroom.
"Painters?" I asked.
"Oh, I forgot to tell you. We received a notice a while back that they would begin painting our side of the building."
"Can I see the notice?"
She dug through the mail on a table next to my bed and produced the notice from the building management. The notice had arrived about three weeks ago. I had not seen it. All of our mail is tossed into a pile, and when my wife has the time, we go through it together. I used to greedily sort through every piece of mail each evening after coming home from work, but now I wait patiently until she has the time and the inclination. With some difficulty, I've learned to accept this new way of doing things.
As she read the notice, I could feel my blood pressure rising and my attitude souring.
"We have to get everything off of the lanai," she said, summarizing what she was reading. "And the notice says to expect lots of noise, dust from repairs to the building's façade, and fumes from the paint. It says that residents should keep their windows closed and relocate during work hours."
My head nearly exploded. I expected the scaffolding to come next, and then soon after that a swarm of painters dressed in dirty white overalls climbing over our lanai, crashing into our plants, boxes, chairs, tables and coolers — and who knows what else. I had not been on the lanai for several years. And, how in hell am I supposed to relocate during the day?
The conversation we had then, even before we had our treasured ritual of a first cup of coffee, was unpleasant and left both of us feeling terrible. I expressed my displeasure at not being prepared for the painters. She apologized for forgetting about their start date, and for not showing me the notice earlier. This event brought up other issues, mostly centering around my feelings of loss of control over almost everything in my life, and her inability to do what I perceive as needing to be done, when I want it done. We've had this conversation before.
As the patient and caregiver, we have different priorities. She works full-time and takes care of me, the bills, the apartment, the groceries, the laundry and everything else. She's busy every minute of the day and overwhelmed with things to do. I just lie in bed thinking about what needs to be done and what I would "like" to see done — knowing full well that my list is much too long for any one person to accomplish. Even if I were completely healthy, it would take several weekends of hard work to put a dent in my "to-do list." She does what she can in the short 24 hours of each day. I try to remain patient, hold my tongue, and silently add to my computerized list. It's a difficult situation for both of us, but every so often, when the timing is right, we come together and one or two things that I would like to accomplish get done.
We've lived this way for over six years now. We understand each other. We understand the situation. We both know that what happened this morning when the painters arrived unexpectedly was just a small bump in the road. It's nothing compared to the difficulties we've been through since I was diagnosed with ALS.
She cried. I felt horrible and depressed. We both apologized and agreed to focus on the positive for the rest of the day. She hugged me warmly and we enjoyed our morning cup of coffee.
A few minutes later, even though it was still very early, my wife sprang into action. She rustled my son out of bed and sent him downstairs to talk to the building manager. He came back and explained that they would probably not get to our apartment for another week or so. We had some time. There was no need to panic. We did talk, however, and we decided to immediately move everything away from the outer railing on the lanai, closer to our bedroom windows. Then, over the next weekend, we would clean up the lanai and move everything into the living room.
I say "we," but what I realized is that once again I was placing more tasks onto my wife's and son's already full plates. I apologized for giving orders and strong suggestions, and for not being able to help. They both assured me with warm smiles that they were happy to do what needed to be done, and that by participating, I was helping. They told me not to worry. I was satisfied that we had taken some action and devised a plan. My wife and son were visibly relieved that I was no longer upset. The day had been salvaged. They went off to work feeling better, and I spent the day as usual, working on my writing, watching TV and napping. The crisis was over.
I've always been a control freak. My wife, son and past co-workers can all attest to that. I don't like surprises. I always prefer to have a plan and prepare ahead of time. Then if the situation changes, the plan or the early preparations can be easily adjusted. I like things neat and orderly.
Before ALS, I was the atypical husband that enjoyed dusting, vacuuming, doing the laundry and general housecleaning — well perhaps these types of men are more common these days, I'm not sure. My desk at work was always clutter-free. I was always punctual, and I was happiest when I could create a plan months in advance for some big project or event. I think my mother influenced me in this regard, but as I grew into a man, I adopted the philosophy that a clean and neat environment leads to a happy and productive life.
So how do I deal with this "control freak" personality trait in my current situation? How do I "let things go" and "not sweat the small stuff" when I have to live with the symptoms and restrictions of ALS?
I literally cannot lift a finger to straighten a crooked picture frame. I can't go grocery shopping, fold the laundry, pay the bills, clean out the closet, sweep the lanai or read the mail. The amount of things that I can't do are seemingly infinite in number. If I think about everything that I cannot do, I become overwhelmed, hopeless and depressed. If I think about everything that I cannot accomplish, I become even more negative and sad. I know the only road out of these dark woods is through positive thinking and reflection. I have to adjust and figure out the things that I can do. I have to prioritize. I have to decide what is important — what can be ignored and what can be left for another time.
I reflected upon this for a while and decided that the top priority for me is to take care of my family.
How can I do that? It's their job to take care of me.
I found the answer in a copy of the Serenity Prayer that a good friend had sent me long ago. I'm sure many of you are familiar with it:
God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.
I now know what I have to do. I have to remain positive, serene and happy. I have to take control of my feelings, emotions and attitudes. If I can accomplish these things, it will have a dramatic effect on my wife and son. I've seen it before, so have you. We are a perfect reflection of the ones we love. If I'm sad and depressed, they are sad and depressed. If I get angry, they get angry. If I am positive and happy, they can go about their day with a positive and happy attitude. This realization was nothing new. This would be true whether or not ALS had entered my life.
I can smile and be cheerful when my wife and son return home from a busy day at work. I can "let things go" a little bit, refraining from adding unimportant tasks to the family docket, but I can still suggest or remind my wife and son when things need to be done. I can give advice and still be involved in family decisions.
I can still control my computer with my voice. I can stay productive during the day. I can pay some bills and do some shopping online. I can research topics that are important to our family's future and well-being. I can still read and write. I can communicate with friends through email and Facebook. I can indulge my imagination and remain productive by writing these blogs and self-publishing my books and stories.
Most importantly, I can fight this disease and stay healthy as long as possible. Every day that I have is another chance to give and receive LOVE from my wife, son, family, friends and caregivers.
I can look forward to the painters arriving on my lanai.
This blog originally was posted by Rick Raker on Aug. 9. 2013.
About the Author
My name is Richard K. Raker, and I am 54 years old. I have lived in Honolulu, Hawaii, with my wife and son for 26 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was totally bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of writing.
First, I struggled through a memoir about the first 25 years of my life, telling the story of the events leading up to my decision to move to Japan. It felt good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew I had. The memoir, A Remarkable Life, Lived by an Ordinary Person, has been self-published using Createspace.com and is available on Amazon.com. After that, I realized that I had a few more stories that I needed to write. I enjoy writing. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It is fun and gives me a much-needed purpose in life, but I do hope that you will enjoy reading what I have written. Thank you all for your love and support. Be sure to visit my blog, Web page, DVD reviews and Facebook page.