A Glimmer of Light
I was diagnosed with ALS/MND about 16 months ago; at the time my two daughters were 5 years and 5 months old. The doctors gave me 2-3 years, and I cannot describe what befell me; the ground just vanished beneath my feet.
Now, I feel I am back on my feet and I would like to share what I believe is most important when facing and living with this disease—how to emotionally and psychologically handle and overcome the recurrent loss of capabilities and changes in your life.
I found that the fundamental perspective to keep in one’s life is to always focus on what one has, instead of focusing on what one loses. Every moment provides the opportunity to appreciate the marvelous immensity of experiences that life provides, many of which I previously failed to enjoy or value “properly”: the sun’s rays on your cheeks; a soft Spring breeze waving your hair; the scent of rain soaking the earth surrounding your nostrils; the bustling chatter of the birds at dawn. And all the human-created wonders too: music, art, books, films, etc.
Yes, so many clichés…but such a privilege they are to behold. And then you can see your children or other loved ones growing and learning; playing and laughing; falling in love and working hard for goals…and while you do, they can see the burning love in your eyes. No matter the condition you’re in, you can always be present for your loved ones—giving them confidence, guiding them through tough decisions…and providing an example of how to overcome any adversity. You can be a hero or heroine.
An uncle of mine once told me that one’s body is something “to forget”– one should focus on cultivating and strengthening the Spirit instead. Of course, we should each do our best to exercise, eat nutritiously and take care of our bodies, but its critically important to resist getting depressed with each physical change, or live obsessed with what has changed or may change in our bodies. Each person has his or her own path to spirituality and I encourage you to follow yours. In my case, I felt the need to get closer to God, not only to ask for help, but also to thank God for all the good and beauty I have received.
It is brutal, horrible and daunting to have ALS/MND, but it also provides the opportunity for each of us to become better people. To improve our personality and character in ways that we wouldn’t have considered in “life as usual”: for example to learn how to better forgive. The point is to try to strengthen our souls and hearts. This way, we will also be in better condition to take the blows that lay ahead.
Finally, one more absolutely critical aspect: never ever lose your sense of humor.
Let me end by sharing an inspiring and powerful message that a wise and sensitive man told me shortly after my diagnosis: “You will embark on a journey in high and rough seas, and you are going to be hit by large and hard waves. But you are the helmsman steering the ship”.
Never forget that you are the helmsman.
by Ricardo Oliviera, Portugal