What do you do when an unexpected ‘Christmas present’ arrives, bringing with it, not delight, but gut-wrenching fear, knowing that you can’t wrap it back up and label it, ‘return to sender, address unknown’? This was the case for Ondreah Johnson, RN, a career nurse who has worked primarily in home care with patients whose own medical issues called for compassionate care, which she offered in abundance. It wasn’t until she became a patient and found herself on the other end of the stethoscope that she truly understood what those she served over many decades might have felt. She shares her story here as if she is allowing us into her private diary.
Ondreah refers to the paradoxical and often juxtaposed journey she is on as THE BOTH. Both frightening and exhilarating. Calling on both self-sufficiency and allowing others to care for her. Both trust and uncertainty. Both physical and spiritual.
In the past year, you have moved from one end of the stethoscope to the other, from nurse to patient. How did that journey begin?
I can go back and say this journey began in 2012 when I had an occurrence during the hurricane that left me with swollen knees, limping, increased pain in my legs and subsequent difficulty walking. This went on for several years which ultimately culminated in my needing a total right hip replacement in December 2016. While I was ‘sure’ at the time of this leg ‘issue’ that I call it, that I was aligning myself with ‘just the right doctors and therapies’, it became more and more clear to me that despite connecting with so many medical people not one of them had an answer or inclusive focus so that I could regain the proper use of my legs, muscles and walking.
Come Christmas of 2016 my early morning wake-up call from a deep respiratory issue brought to my attention the lump in my left breast, another thrust onto my journey. I was in recovery just 19 days from the hip operation, I was not driving yet, I was just beginning to be home alone (prior to this I had the gift of several people staying over when I was first home), I had only been shopping once with a friend and had to use a wheelchair. There was so much I was still dependent upon others to do.
During my journey into healing through breast C, I became aware of just how angry I was. Angry at the whole system and the push to hurry up, get better, get out there, do more, get over it — the medical model of one-size-fits-all kind of thing. Every doctor I went to for this leg issue I was experiencing focused on only ‘their part’ no one really explored outside the box of what ‘their own focus was’, I was not included as part of the recovery on some level. Sure, I had my part, take the meds they were always wanting to push on me, and when I refused they got upset or frustrated because I would not ‘do exactly what they wanted’ and deep inside me I knew there was another way.
When it came time for my hip surgery I was asked a simple question by a friend; “What would your health care look like, what is it you would need for your recovery.” This opened a door into my asking for what I wanted and felt I needed for my recovery. In hip surgery it was having my room prepared a certain way, which included aroma therapy, lights, altar, prayers, people staying over. During my C train adventure, it was asking for help, having people over on the weekends I had treatment, someone going with me during treatments, setting an altar, prayers, and energy work.
Please talk about your unique way of setting up your healing program; how you decorate the treatment space, as well as the terminology you use to describe your process.
When I first heard this diagnosis, I immediately heard I am on a train, it’s like getting on a train and I have nowhere else to go. I can’t get off the train as it is moving along and carrying me with it, so I must go from car to car, each new part of the journey — the gyno visit, the mammogram, the ultrasound, the needle biopsy — the echo of the empty air around me as each new part of the journey was revealed, the diagnosis, the results, the breast MRI, the MUGA scan of my heart, the port placement and then the first day sitting to receive this medication into my body… I called it IV treatment not chemo.
I began by bringing things in a bag to my IV treatments and, by April, I was bringing a rolling suitcase to each treatment. There was a calmness in me as I prepped my space before each treatment, reading prayers when the nurse began pushing the first IV med in ‘the pre meds’ and the IV med itself, I brought sticky pads with me to write prayer words on them and then placed them on the IV tubing feeling that the fluid was being bathed by those words and then entered my body. Even though my head often felt loopy because of some of the pre meds, I felt myself drawn to chanting and singing songs that brought me to my heart, reminding me that I was not alone walking not alone sitting in the car on this train. I was blessed by my friends who came with me, who held my hands, who kissed my naked head, who sang with me, and cried with me, who held so much with me, bringing me home and staying with me.
There is a place one slips into, partly due to the medications and in concert with a deeper beat within us, one that we, I imagine, don’t always get to see, get to touch upon, until the end of our days. Sometimes I do not know if there are enough words to describe that place. Sure, others have spoken of ‘knowing the love that is, being with spirit, with your soul, knowing your God, that there is something bigger than you’. All that may be true. And I recognized much later when my friend Edie asked me a question about resilience, I was / have always been aware of my own deep places of feeling inadequate, of feeling left out, of not getting it right, not for me / kind of old thoughts, like a river that runs deep. I’ve traveled that river a long time. I am familiar with it and yet… Still there even deeper still is this torrent of rushing energy, this river that is full, overrunning its banks often, it just keeps flowing. There is a Depth to this river; it is vibrant with life, rich with expressions, feelings, emotions exploding like waves crashing and foam splashing. It has its own vibrancy and beat. This I imagine is the energy of Spirit, the resilience that others see as ‘positive energy, of moving forward, of not giving up’.
What has it been like to be on the receiving end of care, not just from medical professionals, but friends as well?
At first it was a bit challenging and then somewhere amid it all I found myself ‘letting go into it all’. There was nothing else for me to do but ‘let go and receive’. After my hip surgery I was not able to move around easily so I needed someone around to ‘do things for me’. I honestly thought it would be more difficult knowing how much of a control freak I was/ am. I mean, 37 years as a nurse ‘in control’, now depending upon others to help me do what I needed doing. And yet it was easier than I thought it would be. Once I allowed myself to be more open and vulnerable with my medical teams, ‘things’ started changing around me.
In the beginning of my leg issues, I was more frustrated and angry, honestly. I was so disgusted with the medical profession and the lack of personal care and focus the way one is lumped with everyone else, the one-size-fits-all method of medical care, that I was probably a most challenging patient. And I say, rightly so!
Those questions, lovingly offered by my friend pre-surgery, were pivotal. “What would your medical care look like? Your recovery? What is it that you would need for support in your recovery and how would you bring that to creation?” It was these questions that moved me to really take a look at how I ask for what I want/need, who I am asking for, [what does] recovery look like? “What is it you would need for support in your recovery and how would you bring that to creation?” Wow… I was struck with this invitation to really see within myself what was it that I needed, before what I had to do to heal and get through this? That began my diving into creating my health care service. What was it for me that was important to my healing inside and out? I found myself speaking more openly, honestly, vulnerably to my doctors before my hip surgery and sharing with them what was for me important to my healing. Based on my experiences of trauma in my life and my own internal work, I was more aware of the need to let go and the fear of it as well. I remember having this discussion with the Physician Assistant for the orthopedic doc and I said to her, “As a nurse I know there are things that must be done and that you all in surgery know what you need to do that is your specialty, I am counting on that. I am also counting on the need that I must let go and let you all take care of me during a time when I cannot care for myself and it frightens me at the same time.”
Letting go and receiving, a life-long lesson in letting Love in, really seeing and feeling those around you, those friends who showed up and just said “I will be there for you,” whether through a note, a message, a stay over one night, a listening ear and heart. Wherever one may have difficulty in letting love in. These dramatic tears into the very fabric of your Being (such as a diagnosis of some dis-ease like cancer) really move you to be more aware of and inviting of letting those who love you love you. Now can you love yourself as well, even while you have this ‘thing that is not-so-great’ in your life, as it alters all that you think you knew and know?
Can you talk about the Cancer Life app?
One day while I was on Facebook I saw a request for participants in a research project. I was then moved to connect with CancerLife.com and I met Charlie Coltman, the CEO and creator. This is a free phone app that helps one keep track of their symptoms, has a journal, helps keep you connected with friends and family, has access to reports for your doctors, can keep schedule and update appointments. This app has been a ‘life saver’ for me… I found it so helpful as I journeyed through my C train adventure. Each day a journal entry, sifting through the symptoms and side effects I was experiencing, tracking, documenting, having a place to ‘put things’ as I encountered day after day.
The support group [is] incredibly helpful, having a listening ear, a safe place to share what was going on for me day after day. Being held, supported, welcomed just for where I was and what I was experiencing. Friends and family mean well when you are going through this, however it is very difficult for them to truly ‘get’ what it is you are going through… those that are traveling this train know what it is you speak of. This app, I feel, is a vital piece of a person’s recovery, for it supports them in really getting to know what it is they are feeling. It helps by putting things in an easy-to-access and read forum for the doctors, it supports more engagement by ‘patients/ clients’ which in turn increases active participation on one’s treatments and recovery, supporting each in becoming their own best advocate as well. I may be another woman with ‘breast cancer ‘ and although the doctors can label it one thing, there are specific issues relative to ME that I need addressed. There is no ‘cookie cutter’ care here. It’s time we, those of us going through, living through and with this ‘dis-ease’, take charge where we can and teach as well as help the medical teams help and support us in recovery and greater healing.
Are support groups helpful for you?
Support groups are very helpful, there are so many insights and suggestions, ideas to handle side effects. A place to land and talk about what’s going on for you where others understand and hear your pain and fears. There is so much encouragement and support. The challenge, though, with support groups is that there are also so many new people coming on board that it can feel a bit overwhelming to see so many new people diagnosed every week, let alone [each] day. And there are those who have studied the disease issue and have all sorts of statistics and outcome information, which can be a bit daunting if the statistics are not good for a particular disease.
I still think/feel that groups can be very helpful for us all, for here we can land with a group that can really relate to what it is we are going through. We can see the successes, and we can see the losses. We are invited to live THE BOTH in these groups and to be more present to what we are feeling as we let in and let go at the same time.
Part II of this interview will discuss the challenges of diagnosis as well as guidance for others who may be facing the same diagnosis.