My Story: A Caregiver’s Journey with Pain and Self-Discovery

My Story: A Caregiver’s Journey with Pain and Self-Discovery

Cynthia Toussaint and John Garrett

Cynthia Toussaint and John Garrett

I have been a caregiver to a person with chronic pain for 30 years. I’ve struggled, suffered, had my share of “Poor me” and belatedly discovered the secret to all of this.

Effective caregiving starts with yourself. Taking care of the caregiver.  

My story has been a long one, dominated by chaos, confusion, self-discovery and enlightenment. I didn’t plan on being a caregiver. Most of us don’t. It doesn’t come with an instruction manual. You make it up as you go along, as you seek to aid and comfort someone you love, someone who needs your help badly.

The truth of this is one important aspect of my partner, Cynthia Toussaint, the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.

It is the story of our journey together with her pain.

My 30-year caregiver evolution started when I was 22. I was an actor and Cynthia was a ballerina. All was possible. Then she developed Complex Regional Pain Syndrome (CRPS) — a chronic pain condition that can affect any area of the body, usually an arm or a leg.

CRPS and Cynthia’s pain consumed us like a raging fire. Our plans went out the window as we fought this terrible, mystery illness with virtually no help from her doctors.

The early years were daily struggles with “What’s going on?” and “Why is this happening?” 

Cynthia had become bedridden and I wasn’t prepared to tend to her physical and emotional needs 24/7.

I made a silent commitment that I would stay. I would fight this monster head on. Over the years, her pain became more predictable with accommodations. We used a wheelchair, watched how far she walked, etc.

But family and friends drifted away. And when Cynthia’s health improved, I got angry she wasn’t independent. She still needed me every day and every hour to cook, clean and drive her to appointments.  

I yelled, screamed, ate a lot of junk food and gained 40 pounds. I dressed like a slob and let it all go because I was depressed and burnt out.

I was existing through the life of another, focusing on her pain, sadness and needs. I had fallen into the trickiest, sneakiest caregiver trap of all. I had lost myself. I wasn’t John Garrett anymore. I’d become the guy who took care of Cynthia.

It happens to us caregivers. In our attempt to be the best we can, we make this honest mistake. But with time and patience, we can move beyond the anger and grieving for the life that once was. And that’s when we rediscover ourselves.

Over the last ten years of my caregiving odyssey, I’ve grown and stretched and I now embrace my duties and feel the inner-peace that comes with doing the right thing. I’ve discovered that my wellness is as vital as Cynthia’s. I’ve realized inner-strength that could only come from this wonderful opportunity.

Has it been hard? Yes. Do I wish there had been less challenge? Of course. But I’ve become a better caregiver and a better man. I now love and cherish myself more deeply, and I’ve made a wondrous discovery. I can be a better caregiver for John Garrett too.  

Here are the top caregiver tips that helped me on this journey…

Practice self-appreciation

Caregiving is tough work. Often you feel helpless, lacking ability. But in fact you are the one vital part of making things work. You can’t count on others to give you a pat on the back, but you can count on yourself. Whisper mantras of “I love you”, “You’re doing a great job,” and “You deserve a hug” to yourself.

These simple acts of self-appreciation can improve your mindset to take care of your loved one in a positive, productive way.            

Exercise on a regular basis

I take a long walk five times a week, and that’s a lifesaver. Get out of the house, get some fresh air and clear your mind. Get away from the person who’s probably sick of you hanging around all the time.

Walking or most any form of exercise is an amazing mood elevator.  

Eat right

You need the right kind of fuel to keep up the pace. Fresh fruits, vegetables, nuts, and whole grains. Stress is synonymous with caregiving and eating high-fat, high-salt, and high-sugar foods is a comfort trap.

 Avoid them. 

Do the things that are special to you

Find what nurtures your soul and hold onto it. Don’t give up the things you enjoy because there’s not enough time or you feel guilty not being with the person you’re taking care of. 

Your time and your enjoyment, is an important investment in you.

If you’re depressed and uninspired, that negative energy can corrupt everything.    

Peaceful time for reflection and renewal

Sometimes you need to shut off the caregiving chaos. Take the time to sit peacefully twice a day for five minutes. Clear your mind and practice deep breathing. These micro-breaks will help you re-boot on the most stressed of days. They’ll help you manage your anxiety and frustration, and provide you with a sense of renewal.

All of these are facets to how effective caregiving is nurturing us. For Cynthia and me, this is bringing true joy to our often difficult lives.

Bottom line: You should look at caregiving as a marathon. And with marathons, the ones who know how to pace themselves and how to conserve their mental and physical energies are the ones who sustain and excel.

And, heck, it’s way legal to have a happy time whenever you can.

There are 3 comments for this article
  1. janet marois at 2:16 am

    Oh my God,,,John, dont I know what you are talking about,and felt,,I connect with your story,,I post it on my Timeline,,,and said “Only Caregivers can understand another Caregiver,,what they are going tru,,,” Thank you for posting your story,,I dont feel alone as I often do. My Mother is dying right now in a Hospital,,I have to make a decision in the morning to accept the “Code Confort ” Euthanasie,,,

  2. Mark S. Barletta at 12:29 pm

    Nice to hear your story John of being a caregiver and it work out like it has. I use to advocate for people that suffered from chronic pain on my doctors website The National Foundation for the Treatment of Pain. This Pain Specialist was the first doctor to finally get my chronic pain under control. After suffering for 10 years this doctor had my chronic pain under control in just 3 short months. I felt as though I needed to give back somehow, someway so I began to advocate for those lost in chronic pain. It gave me a great sense of accomplishment to know I placed a suffering person with a good doctor. I did this for 8 years and met lots of nice pain patients and doctors.
    But this all came to a crashing halt when my doctor found out he had kidney cancer and we had to close down the website. I thank the Lord for the 10 years with the doctor that helped me. He was my mentor and what I learned from him I will never forget.
    Life goes on and we must adjust to the life we where given and make the best of it. I’ve never been given more than I can handle at any given time.
    I hope all that suffer from chronic pain find the relief they need and deserve.

    Regards,
    Mark S. Barletta

  3. Allie Axel at 7:35 am

    Thank you John for sharing your experience with us– I was really touched by your story. “Self-care” is often tossed around as an impossible suggestion– when does one find the time to take a bath or take a day off? But your advice is practical and touches the root of the need for self-care. If we don’t take care of ourselves, we get lost in the pain of our loved one. Thank you for your wise words and honesty.