Paying Tribute to a Special Kind of Family Caregiver on His Birthday
As I write this, today is my best friend’s birthday. If I know him well, I suspect that on this day (I’m writing this on Tuesday), he is both externally happy and internally reflective. I suppose it is natural to take stock of life — both the good and the not-so-good — when we hit our birthday.
Admittedly, his birthday also has me feeling externally happy, yet internally reflective. I couldn’t help but think about how long we’ve known each other — 30 or so years since Morehouse College, but who’s counting — and about the great times we had together. Through thick and thin, he’s always been there for me, even when I didn’t know I needed him.
Truth be told, he actually meets the definition of a “caregiver.”
In our sarcoidosis world, we often see numerous doctors, nurses, specialists, and technicians over a given year. In that context, a caregiver “is a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability,” as Johns Hopkins Medicine describes the term. These people are true heroes and blessings that help others who cannot fully take care of themselves.
But I also like another description by Johns Hopkins of family caregivers who take care of “members of their family of origin, but also … those who care for their family of choice.”
For me, my best friend has been a family caregiver.
Perhaps he hasn’t been a family caregiver within the context of illness. Fortunately, while my sarcoidosis challenges aren’t mild, they rarely require a caregiver, at least not in the medical context. And technically, we aren’t related by blood, but we chose each other as family and brothers.
So, no, he hasn’t been that type of medical family caregiver, but he has been a caregiver for certain procedures that wouldn’t allow me to return home unattended. I am “as healthy as I can be,” but since I’ve known him, and especially since I was diagnosed, he has been a constant emotional family caregiver.
And when you have a chronic disease, we frequently need those emotional caregivers.
I’m talking about the person who listens to you when you’re not sure why your body is fighting against you with that sarcoidosis cough. Or the person who serves as an advocate when you are mentally and emotionally drained. Perhaps it is the person who kindly reminds you to schedule your various medical scans. Or maybe he is the one who reminds you that while sarcoidosis affects your life, it doesn’t have to control it.
All those things fit my best friend, my emotional family caregiver.
As vital as our medical caregivers are, we cannot underestimate the importance of our emotional caregivers. They can be just as important to living our best lives with chronic illness.
Happy birthday, brother!
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Comments
Alexandra
I came onto my laptop to check my emails after a very very long day, I noticed a 'pop up' notification advertising 'Run Your Own Race' by Calvin Harris. I chose to click the link and as a result I ended up reading this article which, has hit deep to say the least. I have sarcoidosis I was diagnosed at 29 I am now 34. Sarcoidosis takes more of a 'back seat' to my type 1 diabetes and my three year old daughter (I am raising alone). But today in particular I have felt tired, like really really really tired...and I almost forgot I had Sarcoid...until this exhaustion feeling pinged me back to my reality. Weirdly I never find myself wishing for a cure, or for it to go away, as that would be a miracle too many. But I do find myself wishing for the kind of support described in this very article. I am delighted you have a blood brother to support you in sickness and in health. I can only imagine his support and empathy acts as medicine in itself. I don't have anybody I can call my 'family caregiver' in fact, I am the caregiver to my young daughter. But if I did I would scream from the rooftop my gratitude and appreciation, or I would do as you have done, and write a beautiful touching and inspirational article like this one.
Calvin Harris
Hi Alexandra! Thank you SO much for your kind words. I'm really touched to see the article struck a chord for you, especially when you are carrying so much on your own. I truly hope that you stay strong and find that support, even if it's through words of encouragement. All the best to you and your daughter!!
Mary
Alexandra,
I'm not sure if you are aware of the Foundation for Sarcoidosis Research, but we offer numerous patient support programs including one on one support. Our web site is www.Stopsarcoidosis.org. Please "join" our community by providing your email and we will keep you posted on upcoming educational and supporting events. Best, Mary