I’m not sure why the conversation made me weep only seconds after hanging up the phone. Was it because he was calling from his room at a nursing home that I could barely bring myself to set foot in?

The content of the conversation wasn’t anything out of the ordinary. He told me how the pop machine ate his quarters and how the laundry service never returns his handkerchiefs and even lost a pair of his pants. He said he was wearing the Chicago Bears sweatshirt my mom gave him for Christmas and assured me he would never send that to the laundry.

Or was the reason I wept because, as an 8-year-old, I remember my uncle Mark, my Godfather who has always greeted me with a wide grin, hug, kiss and “Hey gorgeous!”, telling me that he was going to be either a truck driver or a lawyer someday? As a child, I didn’t really understand that both these goals were unattainable for him. I’m not sure if he also had some more realistic aspirations as a young adult, but I know for sure that he didn’t have “move to an institution at age 42″ on his dream list.

I remember the first time, several years ago, I visited my uncle in the nursing home. When I entered and exited the 3rd floor, the most restricted floor in the facility, a loud, shrieking alarm sounded as I opened and closed the gate by the front desk to sign him in and out. I couldn’t imagine hearing that shrill siren multiple times throughout the day. Even though the logical part of my brain told me this was for the residents’ safety, most on the floor being severely mentally ill, I still felt akin to a caged animal when on the inside of the shrieking gate. Plus, I know my uncle, and he is not mentally ill or dangerous. Just developmentally disabled without the greatest self control. But I honestly don’t think I would have much self control if surrounded by mental patients exhibiting loud, disturbing behavior all day. Upon exiting the floor after that first visit, I remember being filled with relief as the elevator doors closed behind me, shutting out the noises and sealing off the odors.

I know the idea of a nursing home was hard for my grandparents. It was only meant to be a short-term solution until other arrangements could be made, but somehow 10 years have gone by, and it weighs on my family now, in my grandparents’ absence. My aunts and uncles have been working hard to get him moved to a group home, but so far his IQ seems to be too low for one place yet too high for another. He seems to be stuck in the middle of able and unable, caged by labels and paperwork and coils and coils of red tape. My aunt says this is why he has fallen through the cracks since childhood.

Having felt out of place many times myself, I feel a certain kindred empathy with this Godfather of mine. I’ve often felt stuck between the worlds of blindness and sight, and though I have no idea what it’s like to be stuck in a state facility, I know what it’s like to feel trapped.

I think he has gotten used to it, though. He has his life there, with meetings to attend and a social structure that he navigates in his own way just as I have a life with appointments, deadlines and a different network to manage.

Over the past year, he has been proudly treating my husband and I to trips to Colonial Cafe, using pre-paid gift cards. We take him out once or twice a month, and I love being able to catch up with him in person.

He doesn’t complain to us much about living in a nursing home. He seems to take life in stride and gets excited about small things, like picking out pretzel rods at Target. He has his episodes and cranky days, but most of the time he sounds moderately happy and somewhat complacent, which really isn’t very different than how half my friends with families and jobs and nice homes sound much of the time.

Maybe we all feel a bit caged by life at times, and probably by the most unlikely of things. The dream home with the pool. That job we always wanted. All those commitments that seemed like really good ideas when we first agreed to them.

A few months ago, when we were out on one of our Colonial outings, my uncle asked me if I had remembered to print my blog posts for him to read, as he had requested a couple times since he doesn’t have a computer. I cringed, telling him I had forgotten again. I quickly changed the subject, asking him how his AA meetings were going, and he told me how he calls my mom and aunt and uncle daily to read them the AA prayer of the day. I asked him if he could add me to the list of people to call with the daily prayer, and he agreed.

Later that day, I received a message from my uncle, reading the AA prayer, just like he said he would (even though I still hadn’t printed the blogs I told him I would. Twice.)

He read it slowly, stumbling over his words at parts, but enunciating each word with great effort.
“Joy, this is the prayer for April 30th…..
‘I pray that I may develop the divine spark within me. I pray that by so doing I will fulfill my promise of a more abundant life’.”

His message came at a rough moment on a rough day of an even rougher week for me, and his words acted like salve for my soul.

Now, when Uncle Mark calls daily, I know it’s to read me the prayer, and I resist the urge to pick up the phone because I prefer listening to his words on my voicemail. That way, if it’s a particularly powerful one, I can save it. Apparently, they almost all resonate with me because my voicemail inbox is now so full of saved Mark messages that Apple has been sending me warnings that I need to delete some. But which tiny nugget of wisdom would I dare to delete?

His messages almost always end with “Remember to hug Ben and hug your kids.” But every once in awhile, they’re peppered with something new that catches me off guard. Like the other day he added “And don’t forget to hug yourself.” And then, as he’s hanging up the phone, I hear him mumbling to himself “I don’t know how in the heck she’s gonna figure out how to do that……” which caused me to collapse into laughter as I hugged myself.

Sometimes we are caged by the most unlikely things, and sometimes we are set free by the most unlikely people.

Mark's birthday cake

Family Party Today is Mark’s birthday. I hosted a party for him yesterday, and guess what he finally got as a present? A printed packet of our blogs!


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14 thoughts on “Caged

  1. Joy, I am laughing and crying after reading this blog. I also get Mark’s daily calls with the AA prayer of the day. At first I thought it would be good for him to recite the prayer numerous times for himself. But the more I got the calls the more I figured out it was actually helping me! To grow in my faith or think about something from another perspective. And often I am doubled over in laughter from something he says, usually a mumble to himself like he did on your message. Today when he called I answered the phone since I had a quiet moment at work and because I wanted to tell him happy birthday. But he just wanted to tell me the prayer and get off the phone. I had to speak up and say hold on a second numerous times before he would let me tell him that. He is such a sweet and caring guy and we are all so blessed to have him in our lives. God works in mysterious ways! Thank you for your blog about Mark and all your wonderful stories that I love to read!

    • Joy I was laughing and crying as I read this blog. I also get Mark’s daily calls and at first I thought it would help him with his reading but the more I got them I realized how much it was benefiting me. To grow in my faith or see things from another perspective, and he makes me laugh too. Thank you for your visits to Mark and your great stories!

      • Thanks Beth! Yeah, I feel like it helps both Mark in feeling needed and helpful to others and, of course, it affects everyone he calls….I think the list is growing! He is so committed with it!

  2. go hug yourself made me both laugh and cry! Your Uncle Mark sounds quite similar to some the students I worked with the last 21 years! I hope each of them has someone in their lives that cares for them as much as you do! I am now officially retired from teaching special education but will always have a spot spot for the people with developmental delays. Thanks for the great blog and getting Uncle Mark the printouts!

    • Thanks Rita! I’m glad the hug yourself part made you laugh….I wasn’t sure if that would only humor family members who know Mark or not (though I guess if he reminds you of your former students, you can picture it more!) Thanks for reading!

  3. Big Sigh. This is very touching and emotional and profound. I was reading it at the nail place and had to walk outside because I was crying so hard. Thank you again for putting into words what you and many of us feel. You are a gift. Our family is a gift.

  4. Joy! Wow. Again, I am in a puddle of tears and laughter with your writing. Thank you so much for hosting Marks birthday party. Thanks for sharing your wisdom and fun.
    Grateful hugs Kevin Kuhn

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