Photo: Calvin smiling

Taking Care of Calvin: Counting the Many Blessings

If you’ve been following my caregiving chronicles lately, you might know that a dear friend of mine, Calvin, who I had the blessing and privilege of caring for in his last days, passed away last month.

Charged with honoring Calvin’s life, we held a celebration in his home last weekend. I prepared the following to share with the people who gathered there, in hopes of conveying the invaluable impact Calvin had on my trajectory. Many people have asked me to share it, so I decided to make it public.

Calvin was such a blessing to me. The more time I spend thinking about it, I can’t stop adding to the list, but here are few of the most important ways he has changed my life.

Teaching me the importance of touch
Supporting Calvin meant you needed to break through our socially accepted boundaries and get up close and personal. That means you had to touch each other.

There are physiological benefits associated with touch. When humans come in close contact with one another, even in minor ways, the hormone oxytocin is released and levels of dopamine and serotonin increase. This helps the body by activating a feeling a well-being and stress relief. Physical touch is known to improve the function of your immune system as well as reduce diseases such as those associated with the heart and blood. We’ve all heard the stories of babies in orphanages.

But there is more to touch that is good for us.  Physical touch also helps individuals let their defenses down and open up to the possibility of trusting another person. (Source: There is a great deal of healing that happens when you open up your mind to physical proximity and get close to another person.

Calvin’s life was no crystal stair. That is one of the reasons I identified with him so well. Mine wasn’t either. I am also a person who lacks close personal connections My mom is not a very touchy feely person. Aside from my mom and my grandma, I’ve never really had anyone in my life to be close to.

One of the reasons I loved Calvin so much is I could give him all this bottled up love. He helped me heal from a lot of trauma and a serious love deficiency. Now that he’s gone I’m not really sure who I’m going to give all this extra love to.

How to get the most meaning out of experiences
Calvin didn’t move like everyone else moved. And how Calvin experienced the world was very different than how we experience it.
When you took Calvin to do things out in the world or celebrated holidays with him or even just helped him through the day to day activities we all do, you had to think critically and strategically about what to do so that he would really know what was going on.
You couldn’t just take Calvin to see the Christmas lights. You had to help Calvin understand Christmas was happening in a different way.

How to be in the moment
My mom is the master of mindfulness. She has been teaching me about mindfulness. But my first crash course in mindfulness was with Calvin.
Our everyday lives are so rushed. We invest so much time worrying about in investing in a future that isn’t even promised, that we fail to appreciate the here and now.
With Calvin, you had to take your time. You really had to live in the moment. For Calvin, that is all there was.

What is truly valuable in life
Since Calvin couldn’t see or hear, things we take for granted, like a good meal, a sweet smell, or the warmth of the sunshine on your face were the things that gave him joy.
We are the ones who are impaired with all of our sensory inputs. Our values and priorities are all out of whack.

On one of my first days working with Calvin, I became Public Enemy #1 over here at the house. I left Calvin in the living room to go to the bathroom. Next thing I know, I hear a loud crash. I come out and Calvin has pulled the tv by the cord off of the table and it’s on the floor. Yes. We broke the TV.

All the staff hated me. It was my first advocacy experience on Calvin’s behalf. I retorted, you’re supposed to be watching Calvin, not the TV.

For me, it wasn’t a big deal. I flipped on the radio until I became comfortable with the silence. And then I came to appreciate stillness. That is how Calvin experienced life.  

I never personally put a TV back in the house. Eventually the staff made a big stink about it and they just brought their own TVs.

To this day I don’t watch TV. We have much better things to do.

Calvin helped me learn to find joy in every day moments and simple experiences. It is something that helps me get through my life daily, despite all the suffering and disgusting things that are happening in the world today.

The importance of close connections
Calvin didn’t actually have many close connections.
Mike and myself and a few exceptionally human support staff were Calvins bridges to a good life. His connections made things possible for him behind the scenes that would never have happened if we relied solely on the service system to meet his needs.
Through his connections, he was able to go to school in New York, work several jobs, retire from a job of over 15 years, become a homeowner, and stay in his home until the bitter end.
Let me illustrate how this worked. Thanks to Sheli i learned about People First. Through People First, i met Lorie Perdieu, who just broke ground on her universally designed house being built through the Fuller Center for Housing. I called Graham and we had a big meeting. Hundreds of people, strangers and friends, showed up or supported the installation of a new roof, windows and feet of insulation in the attic, new life in rooms through fresh coats of paint, replaced electric and plumbing, and made Calvins home safe for him to stay in his home until his very last breath.
Every single one of you in this room has probably been called on to serve Calvin in one way or another, and everyone of you had a role in helping him have a good life. My challenge to you is to never underestimate the your power to be a blessing to other people.

Helping me learn when to pick my battles and be the honey and not the vinegar
10 years ago I was a ferocious advocate for Calvin.
I got Howard fired for feeding Calvin an entire box of Macaroni and Cheese.
For the first part of my journey, I had Mike as a buffer. I could go talk to him about what was going on and he would intervene if necessary. When we lost Mike, I stepped in to fill his shoes. Everyone knows I took my role very seriously. So seriously, that at times I was downright mean. (I hereby offer an official apology for those I may have offended over the years, you have to know that i only did it out of love for Calvin.) I was so concerned with his safety and care that at times I perseverated on stupid details, failing to see the big picture. Through being Calvin’s guardian, I have had to learn how to be helpful without being hurtful, when to fight and when to back down, and how to get people to see your point of view while taking theirs into consideration.

Preparing me for my role as a caregiver to my grandma
I’ve been dealing with a lot of professionals lately since her hospitalization and discharge. Not to toot my own horn, but there hasn’t been a single one of them that hasn’t commented how organized we are and what a good job I’m doing taking care of my grandma. Over the years I’ve realized that my time with Calvin not only helped prepare me for the instrumental activities of caregiving (read wiping butts and giving baths), but also the emotional and spiritual aspects of caregiving. I always remind my grandma that I’m a professional. I think a lot of that has to do with my role with Calvin. Even in his death he is still teaching me how to see it through to the very end.

Don’t spend so much time wishing you could do more that you don’t do enough
After spending a short time in the house and seeing something i didn’t like, I spent sometimes hours perseverating on that thing and then writing snarky novel emails (albeit very eloquent and entertaining) about why what they were doing was wrong, complaining about Calvin’s supports when I could have offered constructive advice on how to do it differently.

When people pissed me off, i had them removed. Some of these people were folks who truly cared for Calvin but because of poor training and cultural differences just didn’t know what to do. Imagine if i used more of time I spent bitching and moaning for a little coaching.

I spent a lot of time feeling sad and bitter about how life has treated Calvin and mourning the fact he had no close connections, so much so that sometimes I failed to actually presently be his close connection.

Over the past few years of being with Calvin, I have remained very involved in his life and seen him often, but have been much less hands on. More recently, I haven’t been able to spend much time with him due to my caregiving responsibilities with my grandma, which began at the same time his former started providing his in-home supports.

I told some of my own close connections in more recent years that I spent a great deal of time feeling guilty for how Calvin’s life was and wished it could be better.

If I could rewind back time, I would not waste so much time just wishing things could be better, and spend more time investing energy in how I wished they could be.

There are not enough words to truly describe the lifelong impact Calvin has had on my life. For all of these reasons and more, I was truly blessed to have such a good teacher to love and be loved by. I pray that everyone is as blessed as I am to have someone that fills their heart and life as I have been.