I am happier because I had to face what all of us try not to face: that we are going to die. It’s a Fact.”…
Life has a sweetness to it and a beauty and a power that I wanted to celebrate.”Valerie Harper (August 20, 1940 – august 30, 2019)
For those of you who have been following the Sick With Optimism blog, you may have noticed a distinct lack of communication over the past couple of months. There were a lot of reasons, and honestly excuses, not to post, but the thing is, I gave myself a break. I took the time to focus on health, family and friends during the warm weather when my sense of well-being tends to be at its best. I have had an interesting summer and have much to share in the coming weeks!
Is Life Better With Chronic Illness?
When I embarked on this blogging journey I originally had taken the position that having been ill and surviving my acute health crisis in 2017/2018 that I was a better, happier person. I had hoped to expound on this, to spread hope and optimism through the reach of my blog.
I had often told people that offered sympathy for the struggles I was experiencing from my chronic illness, scleroderma, not to feel sorry for me, that my illness had been a blessing! I was experiencing life in a new way, appreciating simple things, forced to slow down I was taking the opportunity to reconnect with old friends and deepen relationships with family members. Then in March I read a post by Carolyn Thomas on her amazing blog Heart Sisters entitled, “Post-Traumatic Growth: How a Crisis Makes Life Better – or NOT” which gave me pause. I have so much respect for Thomas that I felt I must reflect further upon my own situation, feelings and motivation.
To be honest, it was the first time I had heard the term post-traumatic growth and I read the article with great interest. Thomas writes:
Post-Traumatic Growth as a modern concept became popular in the 1990s, measured by an assessment scale called the Post-Traumatic Growth Inventory (PTGI). Drs. Richard Tedeschi and Lawrence Calhoun, who pioneered the PTGI in 1999, listed the range of crises that might actually result in positive change for survivors:
“Reports of Post-Traumatic Growth have been found in people who have experienced bereavement, rheumatoid arthritis, HIV infection, cancer, bone marrow transplantation, heart attacks, coping with the medical problems of children, transportation accidents, house fires, sexual assault and sexual abuse, combat, refugee experiences, and being taken hostage.”
The PTGI is based on three key themes that look for:Carolyn thomas, http://myheartsisters.org, Post-Traumatic Growth: how a crisis makes life better – or NOT Carolyn thomas
– a change in self-perception: survivors report increased self-assurance, self-reliance, and competence in dealing with difficult situations.
– a change in relationships with others: after a traumatic event, people report that their experiences resulted in the rekindling of lost relationships and the acceptance of social support.
– a changed philosophy of life: includes an improved perspective on life, reappraisal of one’s priorities, increased appreciation for one’s existence, and stronger spiritual and religious beliefs. “
Yes! I thought as I read… this is me! I felt that I had experienced growth in each of these three areas. But, as I continued reading I began to question myself… Thomas’ article went on to point out that life with chronic disease meant physical limitations and pain:
In a U.K. study, for example, researchers also looked at whether heart attack survivors viewed their cardiac experience as being positive or negative. They found that only 22% of participants described their new life, post-heart attack, as “better”...
Negative perceptions about living with heart disease, explain the researchers, were NOT associated with a patient’s personality characteristics or even how severe the diagnosis was, but with day-to-day functional impairment, a sense of loss, the burden of treatment, recognized mortality, restricted lifestyle, chest pain or anxiety.
This finding makes perfect sense to anybody who is affected on a daily basis by reduced quality of life caused by debilitating chronic symptoms and their associated limitations.CAROLYN THOMAS, HTTP://MYHEARTSISTERS.ORG, POST-TRAUMATIC GROWTH: HOW A CRISIS MAKES LIFE BETTER – OR NOT CAROLYN THOMAS
Social scientist Brené Brown is the author of Rising Strong, a book that examines the character qualities, emotional patterns, and habits of mind that enable people to transcend the catastrophes of life. She argues that we live in “a Gilded Age of Failure,” where we fetishize recovery stories for their redemptive ending, glossing over the large swaths of darkness and struggle preceding it.
Although I may have several pleasant or productive moments every day, for example, my days are – not surprisingly – overwhelmingly affected by the ongoing pain of coronary microvascular disease.
And feeling exhausted much of the day is exhausting! …
So on a “good” day (well-paced with lots of rest periods and relatively few doses of nitroglycerin needed for chest pain), I might assess the impact of heart disease on my life as “positive”. But on a “not-so-good” day (i.e. most days), I might be feeling too awful to even answer at all, never mind think of even one positive benefit of the diagnosis.
This does not mean I waste time pro-actively railing against the fates that have landed me here (although sometimes, yes, okay, maybe I do, just a wee bit).
As the Buddhists wisely tell us: “What is, is.” It’s more that, like many patients living with a chronic and progressive condition, I have learned through cautious trial and error a lot about creative adjustment and re-adjustment – and also about how to try to graciously hang on by my fingernails most days.
My concern with the Post-Traumatic Growth concept for patients is that not only are we supposed to manage a serious health crisis, but we’d better do this recuperation thing correctly so that we can emerge triumphantly at the other end with glowingly heroic results. Oh, and don’t forget: inspirational! “
That last paragraph caught me off-guard, leaving me a little breathless in fact. I worried that if I were to write a blog about life improving while living with chronic illness I may not just be inaccurate, but potentially sending a negative message that would make others who did not have this sense of post-traumatic growth feel, as Thomas so poignantly posited, they were not doing “This recuperation thing correctly.” Our physical challenges can have a negative impact on mental health and I became very concerned about spreading a message that would perhaps cause more harm than good. Thomas’ article goes on to point out that:
Other critics of the Post-Traumatic Growth premise argue that patients’ claims of idealized disease-based benefits should not necessarily be taken at face value. That’s because such claims may involve some form of what psychologists call “defensive functioning”.CAROLYN THOMAS, HTTP://MYHEARTSISTERS.ORG, POST-TRAUMATIC GROWTH: HOW A CRISIS MAKES LIFE BETTER – OR NOT CAROLYN THOMAS
This is an unconscious internal attempt to protect ourselves from powerful, identity-threatening feelings of anxiety (for example, feeling bad about our current health crisis). Experts tell us that all adults have and use these primitive defenses, but most also have ways of coping with reality.
As anything well-written and of value should, Thomas’ article challenged me and gave me cause to think long and hard. Was I experiencing post-traumatic growth, or was it too soon to say decisively if life was better? Perhaps I was simply basking in the relief of being out of the hospital as my condition stabilized… Or worse, was I simply stuck in the denial stage of grief over the loss of my health? I felt that I could not while in this position of uncertainty write anything that would be meaningful or helpful to others. I postponed writing while I pondered this matter further.
The Restrictions and Monotony of Chronic Illness
As the months have gone on, I have remained optimistic but have lived the life of a chronically ill person. Remembering to take my meds 5 different times each day, twice weekly plasma exchange treatments at a hospital which requires round-trip commute of anywhere from three to five hours (depending upon if I can get a ride to the subway and how the weather and traffic are), endless health-related appointments, the lost income and added costs of medications and therapies not covered by insurance, the chronic fatigue and pain. It does get rather tiresome. Some days I have to remind myself to be grateful for treatments available to me, the drug benefits I have, and wonderful team of doctors, nurses and others that attend to my health. I see people out for walks, riding bikes or playing tennis on the new courts near my home and forgetting myself for a moment make mental plans to do the same until it hits me… I can’t*.
*At least not yet!
Days can be long and boring after the initial kerfuffle of diagnosis and acute onset of symptoms from a serious chronic illness. Eventually the flowers, casseroles, cards and well wishes stop arriving. Friends who had been checking in on you almost daily, begin to contact weekly, then monthly, then some cease to connect at all. Turns out that chronic illness is a marathon and not a sprint; everyone else returns to their everyday routines except for you and the people closest to you who had previously relied on your strength and your service. If you aren’t careful to prevent it, you can begin to feel isolated and alone; envy can even creep in towards those who seem to have left you behind. Of course they have not. They are like you once were, busy! Taking care of their families, doing their jobs, volunteering, shopping, socializing with friends who are easier to get together with and so on.
Indeed, it seemed that life had not gotten better at all! Should I write about how my life was so much worse? I read a lot about how bad life is or can get within the various Facebook support groups I belong to. Unfortunately, there is no scleroderma support group in my area where I can go, so thank goodness for these virtual groups formed on social media. But as I’ve said in the past, I do need to limit the time I spend reading these posts because they can fill you with fear and dread. All that being said, I still felt conflicted because in some deeper ways I continued to believe that things had changed for the better. It was all so confusing.
Epiphany! Life May Not Be Better, But Seems So Much Sweeter (Or what I did on my summer vacation…)
This summer I had a few trials, trifling really in the scope of things, which I will discuss in a future post. But, I also had an opportunity; as previously stated above, I travel to hospital in a neighbouring city twice per week for plasma exchange, a trip I’ve been making now for more than two years. Well, just about the two-year anniversary of my second stay in the hospital for scleroderma renal crisis, when I began receiving therapeutic plasma exchange, my doctors agreed that it would be okay if I took a break for a week. To make the most of it, my husband planned a road trip for us, nothing more than a day’s drive from home, but visiting the Jersey Shore and southern Massachusetts, areas we had never been. I had mixed emotions about the trip, I felt both excited and apprehensive. So many people asked me, “What about your condition? What if something happens while you are away?” Invariably my cavalier reply would be, “Nothing is going to happen that will kill me faster than the time it would take to get home,” but their concern made me wonder if perhaps I should in fact be more worried.
We were only going for a week, but the preparations in the days prior were completely exhausting! I realized when I slipped into bed the night before we left that I might have wrecked my chances for a pleasant vacation by over-doing it in the preparation… something that would have never crossed my mind before scleroderma.
We left our place before the sun rose and reached our destination mid afternoon following a pleasant and uneventful drive. The day was hot and sunny, and stepping out onto Atlantic City’s historic boardwalk, the smell of the ocean and the sounds of the waves brought tears to my eyes. I was wearing sunglasses and did my best to hide the quiver in my voice so as not to put a damper on our adventure. Not that they were tears of sadness, I was overwhelmed by a sense of joy and gratitude, but I also wanted to be fun and not introduce drama into this almost perfect moment.
It seems that as optimistic as I had felt and as positive as I had tried to remain throughout the past few years, I suddenly realized that a part of me doubted I would ever travel again… never see the ocean, hear its crashing waves, or feel and smell the salty air again. When it did cross my mind, I had taken solace in the fact that I been blessed to have these experiences before prior to my illness and chose not to dwell on what I might not be able to do. In fact, I would come up with scenarios of how our family could take short trips here or there at some time in the future when my health stabilized. And now…. here I was, it was real and I was filled with emotion. Later that evening I shared these feelings with my spouse who was actually very surprised and responded, “But you have always been so optimistic!”
The year before my scleroderma symptoms became so bad, we had another family beach vacation. Several days that week my daughter and I would get up before the sun reached the horizon to walk on the beach as it rose before us. We would walk for ages, the peaceful majesty of the sunrise would bathe us in a sense of awe and well-being (not to mention some choice pix for Instagram!). To say that before my illness I did not appreciate the beauty of nature, or simple pleasures like the first first hot cup of coffee in the morning would not be true. However, on this trip, every experience was unexpectedly sweeter than I ever imagined. Beyond that, I was able to set aside the consternation I had felt in the past when the places that we went did not live up to my expectations of quality; I was able to let go of my expectations and enjoy the moments in a way I had not been able to since my childhood.
These joyful feelings, while sometimes overwhelming, were not unfamiliar to me. They were the same feelings I had been having since my scare in December 2017: Gratitude… deep and profound gratitude. I have long maintained that I do not fear death, but that does not mean that I do not love my life. After my crisis so much of life seemed sweeter to me – a chat with one of my kids, visiting with an old friend, a sunny day, a fragrant flower, even that hot cup of coffee… it all seemed better somehow and I was so grateful to be able to experience every bit of it.
My husband and I walked short distances on the boardwalk as I could manage. I pushed myself to go a little further than I thought I should, and we reminisced about how before my illness I would force the family to walk as much as possible on our trips, to experience the atmosphere and get our exercise in! We laughed at the fact that if we had come here back then the kids would have been mad because I wouldn’t have permitted taking the car anywhere seeing as the boardwalk took you everywhere you might wish to go. Later in the week we visited Massachusetts, friends took us for seafood at the fishing wharf, and sightseeing through picturesque New England villages and towns. I relished every site, sound, and smell – even when I could no longer keep my eyes open, I appreciated the luxury of having a friend to show us their corner of the world and the wonderful time spent in their company. By the end of the week, I was not feeling well. My fatigue and pain were catching up with me, it got harder to concentrate, and I became more of a listener than a participant in conversations – but still my spirits remained high and my gratitude meter was off the chart.
What I realized on this short trip was that while life may not be as good on a physical level, it was still so very sweet on many other levels… sweeter in fact than it had been before I was symptomatic. Perhaps, this is what is meant by post-traumatic growth.
Every illness is different, even scleroderma patients experience their disease in very different and diverse ways. I cannot say that just because scleroderma caused my kidneys to fail that another person with scleroderma will end up on dialysis – in fact it is unlikely. Likewise, I cannot expect everyone who suffers traumatic illness or injury to have the same sense of post-traumatic growth that I seem to have been able to verify in my own experience. Beyond that, only time will tell if this growth is short-term, continuous, or perhaps may in the future regress. I feel fortunate that I subscribe to the Heart Sisters blog and that I had read Carolyn’s post on this topic; it would be wrong to expect everyone with chronic illness to feel the way that I do and harmful to place an expectation of post-traumatic growth on them, the burden of which might only make their struggles more difficult.
What I do understand is that my optimism and perceived post-traumatic growth are closely tied to gratitude. I sincerely believe that we can cultivate optimism through gratitude with effort. In fact, Thomas concludes her article by stating:
Before you become really depressed by way too much reality, read more about Dr. Martin Seligman’s work on useful concepts like learned optimism, designing a beautiful day, or how even heart patients can stay optimistic.
Finding things each day to be thankful for, whether big or small; simple pleasures or huge blessings… you could start with even just one thing and focus on that. I highly recommend expressing your gratitude when you can to those around you and speak affirmations of gratitude, positivity and optimism to yourself as often as you can.
On that note, I am dedicating this post to my husband to whom I am so grateful for making this trip and my bittersweet journey of self-discovery possible. I am also grateful to my doctor for giving me a week off of treatment; to our Massachusetts friends who, in addition to having been extra-supportive throughout my illness, were incredible hosts for my little vacation that had such a big impact. I am also grateful to Carolyn Thomas for writing her informative and thought-provoking article. Vacation is over and I’m back to the same old routine now, but I am grateful to be with my family, to sleep in my own bed, and to have such excellent healthcare as I return for my treatments and doctors appointments… the list goes on… If you are at all intrigued, perhaps you will give it a try! If you have trouble finding something to be grateful for, don’t give up, it can be very difficult (especially at first). I might suggest you ask a friend or family member to help you come up with some ideas, or seek out the advice of a counselor or therapist to get the ball rolling.
I would love to hear your thoughts and experiences, please leave comments below. If you have a blog or article that relates, please feel free to leave a link and I will check it out. Thanks for reading!
The two quotes at the start of this post are from American Actress, Valerie Harper who sadly passed away last week. I am dating myself here, but she was my favourite character, Rhoda Morgenstern, on the Mary Tyler Moore Show in the 70’s which resulted in a spin-off which she starred in called Rhoda. Harper was diagnosed with Lung Cancer in 2009 which she was treated for and was told she was cured. She wrote a memoir, which included her battle with cancer which came out in 2013, the same month in which she was diagnosed with brain cancer and given three months to live. She was outspoken about her illness, and from the quotes above we see that she did not fear death and strove to live life while she had life in her, and appreciate what she had in the moment (Julie Edger, ‘Rhoda’ Star Valerie Harper Dies, WebMD Health News, September 3, 2019). I wonder if her positivity and gratitude contributed to her living years longer than doctors anticipated she would?