Receiving care without giving back can be difficult. Feeling the love makes it easier.
For the entire day today, and perhaps throughout the weekend or longer if I can subdue my natural (or is it learned) character, I vow that I will accept all of the kindness, generosity, love and care given to me on this day and every day forward without guilt or a feeling of obligation.
I am awash in gratefulness. I accept the gifts of the universe unconditionally.
Some of you may have a similar character. You may feel guilty or obligated if someone does something unexpectedly nice or generous for you. You may even have trouble accepting praise or simple compliments. Instinctively, we know that it is just as important to receive as it is to give. Giving, we all agree, makes us feel good — and we probably don’t do enough of it. There is intrinsic value that comes from giving. Receiving, however, is sometimes harder to accept and perhaps understand. Weird, isn’t it? What are we afraid of?
Now, this may not seem so remarkable to you, but indulge me for a minute while I explain why this simple concept is so difficult for me to accept.
I have been living with ALS (amyotrophic lateral sclerosis) for seven years. I have an active mind, trapped in a frozen body. I face complete dependence every minute, where once I was proudly 100 percent independent. I am dependent on other people and machines for even the simplest things.
I’m grateful for the machines and equipment that have come to me through my medical insurance and doctors. I receive their functionality as graciously as possible. My wheelchair, the Hoyer (mechanical) lift, the humidifier, the air conditioner, the hospital bed, my computer and my TV — they all make my life more comfortable.
I find myself wanting to thank these objects and do something for them in return. For example, I need a ventilator to breathe. It’s a machine though, so there is no need to thank it for doing its job. The funny thing is, I do anyway.
“Thank you, Respironics Trilogy, please keep working … " I find myself thinking before falling asleep. "Perhaps you need your filter changed or a good cleaning.”
Am I crazy?
The wonders of friends and family
Then, more importantly, there are the people in my life that keep me living and support me in my journey to stay positive.
If I have an itch, I have to ask someone to scratch it for me. When my body starts to ache from being in the same position for too long, someone needs to flip me over or move my body parts. If I want to change the TV program to something else, someone else’s fingers have to do the channel surfing for me. If I’m hungry or thirsty, someone has to feed me or give me liquids through a straw. If I’m hot, someone has to open the window or turn on the AC. If my computer crashes, someone has to reboot the darn machine. If a picture frame on my bedroom wall is crooked, someone has to straighten it for me.
My primary caregivers, my wife and son, do everything for me — 24/7. Before ALS, they were just my wife and son. Now, they have the additional title of being my caregivers. Their responsibilities and role in my life have greatly expanded. Talk about role reversal. My wife brushes my teeth every day and helps me with the toilet and countless other things, too numerous to mention here. My son stretches my arms and legs so that they don’t cramp. He sacrifices his Saturday afternoons and Sunday mornings to stay with me so that his mother can take a break and go shopping, run errands or get a haircut. He brings me rotisserie chicken from Costco and chocolate shakes from McDonald’s.
My paid caregivers, who are really like family to me, do so much as well — watching me during the day, so my wife and son can continue to work and get some much-needed respite. Josie keeps me clean and comfortable during the day. I love a warm washcloth rubbed over my face, eyes, mouth, arms and legs. She keeps our house clean and makes sure I drink enough water, take my medicine, and stop and rest when I become too absorbed in my computer and writing. Another caregiver gives me an excellent sponge bath once a week.
And then, there are my friends who supplement my care with friendship, bringing comfort food, laughter, prayers and joy into my life. My friend, Beverly, has found the perfect length of flexible plastic straw for us to use, making drinking easier for all of us — what a relief. My other friend makes sure that I stay up on the current movies, and another encourages me to continue with my weekly DVD Reviews blog. My friend, Bob, comes over every Wednesday and makes sure that I go outside and get some fresh air and sunshine. Friends bring laughter and news of the outside world. The social aspect of being with others, with people that you like and enjoy, has become more important and precious for me these last seven years. And of course, everyone encourages me to continue with my writing.
So, you are thinking, what’s the problem?
Of guilt and love
To my friends and caregivers who visit me regularly, I know it’s difficult for you to spend your energy and time with me. You all have full and busy lives, work and families that you need to tend, too. That’s why I often feel guilt or a sense of obligation when you visit or do something special for me. I feel obligated to reciprocate. You give me so much, and all I do is take. I want to be able to give back as much as I can, and more. Tell me what more I can do, rather than simply say, “I’m grateful, and thank you.”
I feel guilty that I am a burden to my family, especially to my wife and son. I often think that their lives would be so much easier without me. They would have free time, more energy and more money to do the fun things that make life worth living — a nice life insurance check would be theirs to spend. Of course, they would never agree to this, and they would never say that I am a burden. I know that they take care of me because of the deep love that they have for me and each other.
LOVE. We loved each other before ALS came along, but I don’t think we knew that love was such a powerful force.
The other night a flying termite landed on my bare leg. It was late at night. My wife was getting some much-needed sleep — for the last three years she has slept on the floor next to my hospital bed. I watched the bug and felt it crawl across my skin for as long as I could, before gently saying, “Sweetheart, I’m sorry to wake you, but would you please get rid of this bug crawling up my leg.” She woke up, turned on the light and sleepily brushed away the insect. She adjusted my pillows without speaking, smiled at me and turned off the light.
I felt that deep love. I knew then that I wanted to live as long as possible so that I could feel it again and again.
It may sound like a simple concept — accepting gifts of kindness and generosity from others without feeling guilty or obligated — but it was not that simple until I realized the key to receiving is to feel the love. Today, I give myself that gift.
Richard K. Raker, 54, lives 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).