Last week in the Pacific Northwest, one of the most beautiful regions of the USA, I had the pleasure of participating, for the third consecutive year in a very special event. It’s a small gathering but it is still special because of it’s cause. We make this crossing in memory of one of the most special people I have met in my travels, Barbara Louis Johnson, or simply: Barb.
A little over 1 year ago she left us taken by the terrible disease of Alzheimer. If you do not know my relationship with her and her family and the reason we had the “registration number” of the single-engine plane I flew from Canada to Brazil with her initials, check out the story here.
I was not sure if I could cross the 1.3 miles (2km) swimming when Lynn, Don’s sister, a woman more than 70 years old, asked me to be part of her team. I was kind of ,ehhh, hesitant, but said: “uhmm of course, why not?! We can try!”. I actually did not doubt that she could do it but I was not sure about myself!
But what is the connection between Barb and crossing the lake? Before the disease took her completely, Barb kept her positiveness and empathy and she had the idea of gathering all her friends and family to cross the lake in front of her house. Sometimes she would not remember what she did 10 minutes before, but she did not seem to forget that she wanted all her friends to swim with her across the lake before it was too late.
She had no idea that she no longer had the physical or mental condition to make the crossing, but because one of the principles when dealing with a person with Alzheimer’s is try not to reason or to say no, smiling we all used to agree: ” Yes Barb, let’s all swim across the lake!” I was at her house once when she fell down the stairs. When we arrived at the emergency room, her head still bleeding and with that typical smile, kept her good mood joking with doctors and nurses. After captivating them, she shot her invitation: ” Come to my house and swim across the lake!”
These flashes of lucidity brought us great joy because despite the disease rapidly advancing, it showed that Barb was still there despite her difficulties. When the disease progressed and lead to no speech, coordination, ability to do basic things like eat and go to the bathroom, the only thing left was the look in her eyes. I remember when I would look into her eyes trying to understand what they were communicating, trying to find the person who made such a difference in my life, trying to understand what was happening and why this had to happen to a person as good as her. I know it’s silly to try to understand life from time to time. I know we’ll all suffer losses, but it is exponentially more difficult to see a person so dear still breathing, looking you in the eyes but at the same time not really being there.
The first time we crossed the lake in her honor she was at the stage when she was still “alive” but without being able to see and participate in what was in her honor. Her heart was still beating but she was no longer able to understand what it all meant. A year later, her departure brought much sadness, but at the same time brought some relief. Her soul was no longer in her body and somehow for me the swim in her honor would make a little more sense because it felt like she was with us in spirit.
To cross the lake was not as difficult as I imagined, although Lynn and I were the last to finish. But the joy we had while crossing it perhaps was the proof that we indeed had the presence of who we much loved. Lynn and I took an hour to swim to the end and we arrived breathless, but with a smile!
When I make friends with people older than me, many of them make me realize that to be old is nothing more than an attitude. I do not deny that with the passing of time, we get more wrinkled, have pains here and there, but there are some people that never seem to grow old. I do not mean people who look much younger than their age, but who keep the attitude that life is an adventure. They are people like Barb, Lynn, Don, and his stepmom Betty, who do not want to stop learning and exploring, who keep their opinions and beliefs flexible and are open to new ideas; who are not lamenting the past. Most important is that despite difficulties, they do not use then as an excuse to keep leading an adventurous and fulfilling life. I am grateful to all the people who I encounter in my travels that have taught me at a young age not to grow old: Lynn Johnson, Don Johnson, Betty (Don’s stepmom), and of course my grandmother, Hozana Athaíde who is over eighty years old and who probably came to this post via her facebook or instagram!
Sometimes a terrible disease like Alzheimer shakes our foundations. It’s not only hard to think positively at these times but it is almost an insult. Yet in spite of life giving us that slap in the face we might experience an awakening of values that may have been neglected for a long time; we begin to value the people and experiences that pass almost unnoticed in our journey on earth. For us who remain, is left the concern and empathy for families who go through the same difficulties. To turn those feelings into something practical is a personal choice. The choice of family and friends of Barb is to gather every year despite personal differences, to remember not only a person who was very special but to remember her values, example of life and the lessons she left us.
The Johnson family goes even further. Tomorrow we will all be on a walk in Seattle to raise awareness and funds to end Alzheimer’s. I know you might not be able to join the walk but consider participating in a cause that helps millions of other families around the world dealing with this disease and helping the Alzheimer’s Association advance the research in prevention, treatment and cure.
In a letter sent to her friends, Barb’s daughter, Kristine, describes her last year: “I have had the time to miss and remember the amazing mother and woman that she was, not who she became with the disease. This has been a blessing, but has been very hard. A blessing because these are the memories I want to remember forever, but sad because I have time to think about how much I miss her and wish we were still creating memories. A day doesn’t go by that I don’t think about her.”
If you want to contribute to this cause in honor of Barb or anyone you know who have been or is going through the same conditions, consider clicking this link and make a donation of any amount: http://act.alz.org/site/TR?px=