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Dealing with Disabilities During Quarantine

Disabilities in the times of Covid-19.

How has this quarantine influenced your daily life as a family member of an individual with disabilities?   I feel that these uncertain times have brought out the best and sometimes the worst in people.  It has exposed what connects us as humanity, but it has also shown us what divides us.  For many of us, those of us who live with children or adults with disabilities, this Covid 19 stay-at-home has been nothing short of challenging.

In my case, I have had to come face to face with my fears.  And yes, I was confronted with the very common fears of getting sick and dying, but I have also been confronted with the very real fear of losing all of the gains that I have worked so hard to secure for my brother, namely,  to be accommodated, to be included, to be understood, and to be valued as a human being.  My brother is an adult with multiple disabilities, who needs assistance for daily living activities, and needs help navigating what the rest of us may call mundane.  He finds it impossible, for example, to wear a mask in public without avoiding the feeling that he is choking to death. 

I have been in communication with my friends around the world, who are struggling to keep their children or adults with disabilities active, focused, and who are doing whatever they can to prevent the isolation that is so common in our population.  While many parents all over the world are struggling to make distance-learning work for their young school age children, families of children and adults with disabilities are struggling to hold on to the gains that they had already attained in society. 

On the other hand, it may be frustrating to see how quickly society reorganized to accommodate for this pandemic, as many of us shifted to working from home.  Working from home had been repeatedly requested by our colleagues with disabilities around the world, and most times not granted, forcing them to have to adapt themselves to a world that was not created with their needs in mind.  We are quickly seeing how the wheels have turned to accommodate society “at large.”

We also struggle because although we understand why these new guidelines were put in place, and how dangerous it could be not to follow them, we cannot avoid a feeling of déjà vu when it comes to safeguarding the rights of our loved ones.  We are constantly caught in the middle of conversations, but we are not always able to raise our voices loud enough to be heard.  I remember distinctly how the “gender-only” bathroom conversation was so personal to me.  After my father passed away, my mother became my brother’s only caregiver.  So, when my brother needed assistance in the bathroom, was she to do it in the ladies ‘room?  Or in the men’s room?  There is no conversation that does not include our population whether we recognize it or not.

So perhaps while we are sad about how much we miss our shows, going out for dinner, or travelling, all valid reasons to feel blue, let’s for one moment think of our fellow human beings with disabilities and about how we can make this place one that includes us all.  Let’s remember that they, too, want to see shows, go to dinner, freely ambulate the streets, and travel. 

Mother with her adult son.

Please let me know how you are feeling by dropping me a note below.

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Making the Best of a Sad Day

Life in the times of Covid 19.

Today was supposed to go like this: I would get up early, after spending well into the wee hours of the night making sure that every detail at the apartment is taken care of, and I would run to the airport to get my mom and my brother. Instead, none of those things happened, as we are hunkered down in our homes, patiently waiting for this pandemic to ease out.

Although I have always been a fan of “regular days,” this particular regular day is a bit sadder than it should be. I can’t help but think about all the things that I was supposed to do, all the plans now discarded, the hugs not given, the laughs not exchanged.

However, in the midst of all this, I’m also content, calm, accepting. I’m content, because I know what love is, what it feels like. To experience pain is to know love. I’m calm, because this quarantine has forced me to look inward, as it should be, and to obtain the quiet that being, and not doing, entails. And I am accepting, because this is a reality that no one can change, no matter how hard we try.

I am also very grateful, for the beautiful special families out there, for granting me an opportunity to be part of your lives and to share mine with you.

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Compassion is the Answer

It’s all the little things…

This past weekend, I had this nagging, uncomfortable feeling.  Sometimes when things aren’t right, you can’t make them right, I thought.  You can exercise every day to your favorite tunes, with the on-demand app that you have been given since your exercise class suddenly closed, but you can’t dance next to your friends.  You can raise a glass and toast over a WhatsApp reunion, but you can’t hug your friends on the other side of the screen.  You take a walk, and you realize how many stores have closed.  I mean, not just temporarily or during quarantine.  These stores are permanently closed.  Sometimes the financial burden is too much to bear and retreat is the only way out.

Someone told me that there will be a before and after.  This pandemic will change our fabric forever.  Sometimes I wonder, will we be able to regain our sense of community?  We are connected more than ever, yet this is not where our minds take us when we think about others.  We look at our neighbors with suspicion.  We look at the next person in line at the grocery store with disdain.  Are we learning to be more compassionate or are we learning to be more self-centered?  I hope the former and not the latter.

These thoughts were making me so sad that I began to look for a way out.  Would watching a good movie change my mood?  A new video chat with friends?  How about spending some money on something new?  Then it hit me, nothing that I could do about the situation will change it.  These things will make me feel better for some time, but they won’t make me feel better in the long run.

I decided to meditate, long and hard, to find the stillness and acceptance that I needed.  It turns out that accepting this new reality is perhaps the best way to cope and deal with it.  “Life is suffering,” the Buddha offered, and found it to be such an overarching reality that he called this principle “the first Noble Truth.”  We suffer because people get sick, die.  We suffer because we are separated from those we love.  But more than two thousand years ago, the Buddha taught that no matter how hard we try, we cannot avoid getting sick, getting old, dying, and being separated from the ones we love. 

My challenge for everyone out there is to take this new reality, understand that it is life staring at us in the face, making us look at our own nature, and accept each one of us as we are.  Part of this is to be compassionate, as not only will your fellow humans go through this:  You will go through this as well.

I once heard a Buddhist teacher say “treat the glass as if it were already broken.”  If we see each other as vulnerable, fragile, prone to getting sick, dying, we would be much more compassionate with each other.  We normally forget this reality, until a loved one falls ill or dies.  Let’s not wait until then. 

Compassion is the answer.

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What happens with our aging parent caregivers during quarantine?

My mom, up until recently, lived alone.  What I mean by “alone” is that she was, and still is, the only caregiver for my youngest brother, an adult in his forties with severe developmental disabilities.  My brother needs help with every aspect of daily life.  Unfortunately for both of us, she also lives very far from me.  This put us in a very precarious situation, especially as travel became restricted and tickets were voided.

One question that has repeatedly come to mind (and that my mother has voiced often) is the question of what happens if she gets sick and needs to be completely isolated.  Who would take care of my brother?  And vice versa, what would happen if my brother got sick?  He needs help in many aspects of life:  He cannot prepare food, may need help to eat, go to the bathroom, take a shower, you get the picture.  This question came to the forefront when her entire region was placed on lockdown.  During lockdown, if my mother were to be isolated, no one else could come to her rescue.

In the last couple of weeks I have seen reports from parents who can’t see their children because they work in hospitals and are afraid to be carriers of this virus, or because they, themselves, are sick, and need to be isolated.  I saw a neighbor’s post on social media, where she describes that she and her husband are both infected, and the children are basically fending for themselves.  Good neighbors and local restaurants deliver food to the children so that they don’t go hungry.

My mother was lucky that a cousin decided to temporarily move in with her, and I am forever grateful to her for doing this.  Her region is still on lockdown and it would have been tremendously difficult for her and for me.  For many of us, it is not only the anxiety over the illness but also the anxiety over what happens if isolation is needed that keeps us awake at night.

It has always been my belief that when we live a situation like this for many of us the world only revolves around us and the four walls that enclose us.  It is easy to try to protect what is “us” and “ours” and we tend to forget that it is precisely in times like these that we need to be the most generous, the most neighborly, the most caring, and the most mindful.  These times call for us to reveal the BEST in us.

Thanks to my mother’s cousin, she is not alone, and she can rest assured that in the worst of situations, there will be someone beside her.  If my mother needs to be isolated, my brother will have food on the table and will be able to get assistance for those activities of daily living that would be impossible without her.

My mom and my brother

Are there any other primary caregivers out there who are terrified of being in a similar situation?  I would love to know what you are feeling at this time.  What are your thoughts?

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Love in the Times of Covid-19

“We are here to awaken from our illusion of separateness.”  Thich Nhat Hahn

I have always been drawn to Eastern thought, philosophy, and particularly, Buddhism.  I have always believed that in this world, we are all interconnected, and the Buddhist principle of equanimity (we are all equals) represents this belief.  There isn’t an action that we take today that does not have a repercussion in the world somehow.  They call this karma, which is more than what it represents in the colloquial sense of the world.  Karma is cause and effect. 

Buddhist monk looking over at the mountain

We, especially in the Western World, tend to erect these big walls, hide behind them, and call them “me.”  We are individualistic, and to a degree, act to protect this “me” that we believe is separate from everyone and everything else.  Enter the new coronavirus, Covid-19, a microscopic organism that does not need anyone’s permission to enter a region, a country, a body, to remind us of how interconnected we are.  We typically don’t think about how the cup of coffee we drink in the morning connects us to the rest of the world, for example.  Before we even place that little cup in the machine, it was packaged, bought, collected, grown, planted.  We may not think of the farmer in Colombia who planted the seed or collected the coffee beans, but we are connected to them when we drink that morning coffee.

Covid-19, the new coronavirus, has made us think about ourselves, our surroundings, and everyone else in ways that we haven’t before.  Our tendency is to tend to protect the “me” inside of us and push away.  But with this epidemic, I have seen many people tell me that they are willing to sacrifice things they love for the sake of others.  Many people are choosing the wise path.  An action that we take today can affect someone else tomorrow, and when someone is affected tomorrow, in turn will affect ourselves.  This is a difficult choice, but many people are willing to do this so others are not affected.  What a wise, loving choice!

I propose that we choose LOVE and KINDNESS instead of fear.  I propose that we think of the world in terms of US and not in terms of US vs THEM.  I propose that we all write stories so that we can tell the future generations what it was like to live through these times. 

Let me know how you are coping, what you are thinking, and what you see.  If you want to appear on this section please send your story to ourspecialvillage@gmail.com

#Lovingkindness is the answer!

many incense sticks on a bowl of sand