Wednesday, February 8, 2023

A New Perspective

I've written about perspective before, specifically how living with Jeff's spinal cord injury has opened up an entirely new perspective on life for us.

But I've recently experienced another new perspective that I wanted to share.

Last month, just ten days into the new year, I received news that I would put into the category of; "a caregiver's worst nightmare." 

I was diagnosed with breast cancer.

Quite suddenly, I had become "sick." Of course I physically felt fine, but I was now aware that there were cells in my body that were not fine at all. And I would need surgery to remove them. And I would need time to recover. And I would need help.

All I could think about was how am I going to take care of Jeff when I need care myself?

The rest of January was a whirlwind of medical appointments for me followed by a couple weeks of waiting for pieces to fall into place. During the waiting period, I joined an online support group and walked a fine line between doing the right amount of research to educate myself while being cognizant of not going down the virtual rabbit hole of doom.

By the time I met with my surgeon in early February and knowing the tumor in my breast was on the larger side, I was prepared for her recommendation: mastectomy.

Of course it's not at all what I wanted to hear. I wanted her to say the tumor had magically disappeared, that I wouldn't need surgery afterall, and I could just go back to being my husband's caregiver and taking care of my family. But that didn't happen. Instead, she explained the surgery to me, told me what to expect physically afterward, and when I told her about my caregiving responsibilities, she told me that's something I would definitely need help with - for a few weeks at minimum.

When I got home, I shared the news with some close loved ones. And they all asked me the same question: how do you feel about this?

And as I wrote back to them, I found myself saying the same thing over and over - that the last decade of living with Jeff's injury has given me a different perspective than most. I explain it in a response to my dear friend Shannon who has given me permission to share (my comment is in blue):

Here's where I write about my perspective: ... I think I just have a bit of a different perspective than most. If Jeff can continue on with life being paralyzed from the neck down, I can certainly do it with one breast! Our struggles have given me strength I don't think I would have had otherwise.

But that's not the perspective this post is about. 

Here's the rest of our conversation:

Shannon writes: I'm so proud to be your friend with what you've done with your life.

What?? Her words touched me deeply - and also completely caught me off guard. 

What did she mean "what I've done with my life"? Because from my perspective it really seemed like life was the one doing stuff to me - not the other way around. I explained as much in my response:

I so often feel like I haven't done much or enough with life because it hasn't turned out the way I wanted or the way I planned. But your words are a reminder that life can still be meaningful and special even if it isn't the life you always wanted.

And then she dropped the REAL perspective:

What you do is endlessly meaningful because it impacts so many.

And just like that - bam - Shannon let me have a little glimpse of how others see me, see how I - how my family - has dealt with catastrophic challenges and how that's meant something to others. 

She gave me a new perspective and reminded me that not just what I do, but how I do it, is important.


My surgery is scheduled for Friday, February 17th - one day after my 47th birthday. I never thought I'd be celebrating a birthday in my 40s by having my breast removed due to a cancerous tumor. But then again I also never thought my husband would be paralyzed just before his 40th birthday, and we would spend the next 10 years rearranging our life to accommodate his injury.

And I would be lying if I said I wasn't nervous. I am. Waves of anxiety wash over me as I think about the surgery, the cancer, the care, the treatment, the healing, the ... everything. There's a lot to think about and process.

So even though we don't have all the details worked out for Jeff's care after my surgery, we do have family who is willing to help, friends who have offered support, and a decade of hard core troubleshooting skills to draw strength from.

And of course that little thing called perspective that helps keep us going.

Tuesday, November 15, 2022

Caregivers, I See You

November is National Family Caregiver's Month, and it's been a while since I've written about caregiving, so I wanted to take a few minutes to do just that.

Family caregivers aren't "professionals" per se. While many of us have the skills that only years of experience can provide, most of us didn't choose this role. We're simply family members who have rearranged our lives to provide care for our loved ones.

We carry the weight of our family's needs on our shoulders. Our loads are unbearably heavy. And sometimes we drop it all over the place. But we always gather it back together, find a way to pick it all up again, and somehow carry on.

Everyone tells us we are the strongest people they know - and we are. Even at our weakest. Simply because we must be.

Everyone sees us as these solid figures supporting our loved ones ... but that's really just the first layer.

If you are a family caregiver, I want you to know that I see more.

I see the way you care for your loved one just so, so you can make them as comfortable as possible even if you can't take away their pain.

I see your vast knowledge of your loved one's condition, the way you know exponentially more than any medical professional overseeing their care.

I see you expertly connect tubes, administer injections, and handle all matter of bodily fluid with grace, and without hesitation.

I see the way you've learned to navigate a broken healthcare system to get your loved one the services and equipment they need.

I see all the hours of work and sweat and planning that happens just so you can get your loved one out of the house.

I see the way you smile sadly at the photos your friends post during the summer of their perfect families on their perfect vacations.

I see how you never sleep, not deeply, because you have to be ready to jump into action when needed. And you're always needed.

I see you struggle with self-care because sometimes the thought of taking care of one more person is just too much, even if that person is you.

I see the way you step away from it all and take a moment for yourself in the closet or in the bathroom and let the tears fall.

I see the way you step back in, exhausted but capable.

I see how caregiving consumes you because it demands so much of you.

I see that there's more to you than caregiving, and when you take a little bit of time to reconnect with your own passions I see the joy it sparks.

I see your gratitude, your tears, your heartbreak, your laughter, your anger, your relief, your exhaustion, your frustration, and your deep, unflinching love that all make up the impossibly difficult thing you do called caregiving.

I see you because I am you.

And I want you to see you too.


Family caregivers often take a backseat role when a loved one's injury, illness, or disability is on center stage. But we're often the ones making it all happen behind the scenes. Keeping the production moving forward. 

Afterall, the show called life must go on.

If you know a caregiver - whether they are new to caregiving, if they're in the thick of it, or if their caregiving days have passed - please share this. 

Let them know you see them.