Why should I write about this topic while on my third day of vacation at the seaside? Well, maybe because whereas you can leave worries and certain repetitive thought patterns behind while vacationing, your chronic illness usually just goes ahead and jumps into the suitcase, whether you invite it along or not.
Even before we got here, I already had a lot of ideas of what to do to make the most of these days in this incredible place: swimming in the pool and the ocean with my son, reading a lot, writing in the evenings on the gorgeous terrace we got this year, going to the gym every day to do a half hour on the elliptical, admiring the sunsets…
On the first day, I managed to do everything on my list and when I finally went to bed, I felt really happy and grateful. But the next morning, I knew as soon as I got up that it wasn’t going to be a good day. I only had enough energy in me to go down to the pool area and just sit or lie down on a chaise longue. I went to bed before eleven, which to me is pretty early when I am on vacation.
When I was finally diagnosed with Dysautonomia (“the most common condition you’ve never heard of”, as it is aptly described on the Dysautonomia International website) about two and a half years ago, I was mostly relieved.
On one hand, I could finally make sense of so many strange events of my history; for instance, the three day-long migraine episode I had when I was eight years old for which I had to be taken to the hospital, the time, at age twelve, when I just fainted while walking from the kitchen to my room, the embarassment I felt during a trip I made to Italy many years ago, when I couldn’t seem to stop sweating profusely on the Roman subway, while the other passengers looked as fresh as cucumbers, or the extreme fatigue I felt during my pregnancy which forced me to stop working two months before the planned time.
On the other hand, with finally knowing what was wrong with me came the hope of actually feeling better, once I was properly medicated. This did happen. Although there is no cure and the medication only partially relieves some of the symptoms, my quality of life has improved significantly.
Before we go on, let’s be clear on the fact that, according to what I’ve read and learned about my illness, my particular case could be considered mild. This makes me feel extremely fortunate and also have the highest respect for those for whom the illness manifests more strongly, as well as for the people who help them and care for them on a daily basis. In fact, as benign as my case might be, it is still challenging almost every day and it’s very difficult to imagine what it’s like for people who have stronger symptoms.
Some time ago, I watched Halle Berry say during an interview, that she was diabetic and that it had taken her about five years to adjust to this new reality. That’s the only thing I remember about the interview, probably because I am going through a similar process. You’d think it would be easier: you go to the doctor’s, they give you a diagnosis and prescribe treatment, you then make the necessary changes to your lifestyle, end of story. Well, nothing could be further from the truth…
I keep trying my best, I still get it wrong sometimes, but all in all, I’m doing fine. I have definitely learned a lot or at least I know what areas I should keep working on, now and forever, I think. It is not easy to adapt to an illness but if there’s anything positive about it, I’d say it’s the important lessons you learn, which go far beyond just taking better care of your body.
Adapting to the unpredictable rythm of my body and to its limitations
I can classify my days into three types: good, bad and average. The latter are the most common. On an average day, even though I can work and do all or most of my daily activities, my energy level can range from good to pretty low, with the early afternoon hours being the worst. I may experience several symptoms on an average day. There are the frequent ones, such as brain fog, dizziness and heartburn. Then, there are the “seasonal” ones, like experiencing waves of shivers in my arms and legs on cold nights, or swelling in my feet and legs and rashes on the skin of my face during the warm months. And finally, there are the “one time only” weird symptoms, like the time I coudn’t read before bedtime for a month, as the words on the page would dance before my eyes, or the two weeks or so, when every time I would lie down on my right side, the room would spin around me, as if I were drunk.
On good days, I almost feel as if I weren’t ill at all and my energy level can be pretty high, at least according to my standards.
On bad days, however, even breathing seems like an effort, I usually have to cancel work and I spend most of my time sleeping.
Even though the bad or average day spells are hard to manage, I believe the hardest of all is the one bad day that happens right in the middle of a good spell. It’s hard to wrap my mind around the fact of the body simply “breaking down” all of a sudden, when it had been functioning just fine the previous day. I might have a proper diagnosis now, but at times like these it’s, like we say in Portuguese, as if my head went into knots. Let me explain: when I am having a good day, it can be hard to believe that bad days are also a part of my life and I even wonder sometimes if I’m just being a baby about the whole thing.
On the contrary, on a bad day, besides the physical ailments, I have to deal with the despair of believing that I’ll never be able to work again. I am also overcome by guilt, watching from my bed how my mom helps my son with his homework, makes him dinner and checks if he brushed his teeth well. There’s also the fear of “not doing a good job of raising my son “ since on bad days I just don’t have the energy needed to explain, to negotiate, or to offer any guidance. My rational mind might know there will be good days again, but the undeniable reality of my body’s weakness crushes any positive thought with all its weight.
It has been and still is hard to adjust to what my body can or cannot do on any given day. It’s a hard blow to the ego to realize the will and the mind can only go as far as the body will take them. It’s tough knowing that a good spell can end at any moment and, because of that, it becomes useless to plan too far ahead. It’s not easy to accept that every day will be different, and what was easy today might be impossible tomorrow.
I think the reality of my body has taught me the humility that is needed to accept my own limitations and the fact that, try as I may, things will not always be what I want them to be, not even if “I dream them and create them in my mind”, as some schools of thought would have me believe. The reality of my body has taught me to live within my possibilities, in a simpler way, avoiding superfluous expenses, as I never know when I will have to cancel work and earn less money.
Faith and trust
When I am unwell and feel as if I might never be okay again, the only thing that makes it possible for me to leave this dark place is to take a leap of faith. Faith that despite the unwellness, the problems, the waste of time and money, the last minute changes in plans, etc. everything will be fine.
Faith that good results can be achieved in spite of efforts being less than consistent. Faith that a life can be good and valuable, even if plans often go flying out the window. My illness is an invitation, or should I say an ultimatum, to quit being the captain of my life, or more precisely, it’s an invitation to give up the illusion of control over my life. It’s having faith that I am not alone, that even if I might not always feel it, the grace that sustains me at all times, won’t abandon me and will in fact keep on carrying me along, during hard times and after as well. This is why I can relax and let go of the attachment that is fear. I can accept that on a bad day, I am allowed to rest, to sleep and to not think of anything.
An invitation to go deeper into myself
Some time ago, I read this article about Denmark that said one of the reasons for it having the highest educational levels in the world is the weather. Since it is less than lovely most of the year, people are sort of forced to spend a lot of time indoors, reading or studying. I see a similar invitation in bad days. When the body is too weak to move, when even reading or checking social media seems like too big and effort, there is nothing left to do but to dive into the depths of my own being. From this point of view, illness actually clears the road for me, eliminating potential distractions and making contact with grace possible.
Sometimes, my interaction looks like the one a daughter would have with her mother or father: I ask for blessings, I ask for protection. At other times, I will focus on contemplating the silence and the quiet, where it’s no longer clear where I end and where this presence that creates, encompasses and brightens everything begins. I always feel better after spending time this way.
Grace shines through everything
Living with an illness is one of the circumstances of my life that have taught me and proved to me that there is grace, joy, peace and serenity even in pain, in unwellness and in the frustration caused by plans changing and our body not doing what we want it to do. It has also taught me to love and cherish my body, not in spite of its limitations, but because of them. In our culture that worships everything “fitness”, it can be a challenge to love our bodies as they are, and not as they “should” or “could” be.
Nowadays, one of the appeals that meditation, yoga, etc. hold for most of us is the possibility they offer of reducing stress and improving our health. For me though, a more radical approach lies in our contact with the source of our being going beyond the search for personal gain, be it serenity or improved health. In this sense, the search means more than we thought, but also less, or at least something different.
While the source of our being fulfills us, it won’t stand for any of our calculations or negotiations. While it blesses us, it won’t be manipulated. It is not a means for us to reach our personal goals. What it does offer is an invitation for us to give up the illusion of control over the course that our lives may take, an invitation to stop thinking that the best ideas and possibilities for growth and learning can come from us, to stop wanting our actions to always yield some kind of gain. There are rewards indeed, but they are not what we think they are, let alone are they a prize for our efforts.