In November 2018, I surprised myself when I wrote about how I was grateful for my MS diagnosis. Before writing it, I thought about the benefits of my diagnosis, in light of all limitations. I was healthier, mentally and physically because of it. I made and achieved personal goals since my teenage years. Can an illness be a positive? I asked myself.
As I wrote, I found the answer was “yes.”
This isn’t a case of the dreaded “inspiration porn,” that plagues people with chronic illness. I am not saying that chronic illness is some test that brings enlightenment to its sufferers meant to inspire others.
I was talking to Ash a few weeks ago about how my MS isn’t “sexy” enough to be inspirational. I’ve temporarily lost leg function before, but never to the extremes that other people with MS experience. There’s nothing inspirational about my diagnosis and disease-management story.
What I am saying is that, for me, getting ill was the wake-up call I waited for all my life. The call rang in the background, but I kept ignoring it. Getting the “all clear” from my neurologist on my brain lesions shook me out of complacency. I reached my “rock bottom” and needed to work towards the person I dreamed of becoming for so long.
I absolutely have my moments where my MS is a negative thing. I hate my brain fog, when objects slip out of my hands, or I struggle to get out of bed due to fatigue. There are days where I wish I could trade places with someone who isn’t chronically ill just to feel “normal.” I will admit: this daydream occurs at least once a week.
Taking a mental tally of the benefits my illness brought me versus the negative, I’ve found that the positive outweighs the negative. This won’t be the case for everyone, my MS was never that bad, to begin with, but making the decision to be positive is one form of disease management.
How? It gives me a more realistic view of the severity of my illness. Before, I had a hopeless view of my future. I waited until I progressed to Secondary-Progressive. I now see that the MS does not limit me as much as I thought it did.
My perspective on my illness is evolving. Rather than re-publish the post in November with some edits, I wanted a separate post to reflect on everything I’ve learned about myself and my MS in the last eight months. Life is a classroom, and I’ve learned a lot more about myself since November.
In childhood, I was taught adversity was a good thing: it’s what shapes us into stronger adults. It’s one of the reasons why I chose the lotus for MS Awareness on the blog. Through the mud does the beautiful lotus flower bloom: a perfect metaphor for what it’s like to live with a chronic illness.
We sit in our dark moments, in the middle of an exacerbation, unable to see the internal growth taking place. When the exacerbation is over, we blossom into a more resilient person, wiser from the experience.
I just passed my second anniversary since my last major exacerbation, but I still live with a fear that I will wake up with blindness in one eye, or unable to lift my leg to walk.
I am more aware of a lot of things in life.
I’ve become more mindful of my time, choosing to live in the moment more, rather than focusing on the future fear of an exacerbation. I appreciate each day I get exacerbation-free. I am aware of my aging, and what my elder years might look like with MS. I recognize my mortality more, not because MS might kill me, but it might take my ability to function away from me, so I have to wait for years to die in a hospital bed.
This is unlikely to be my situation, but this disease is so unpredictable that I cannot rule it out entirely.
That is something the MS taught me: the unpredictability of it all. Everything. Each time I go out to exercise, I play with Jai, I interact with Ash, or love on my cats; each of these moments is so precious because I do not know what I will wake up to in the morning. If I am lucky, MS won’t get me, but MS did make me aware that anything can. MS taught me that every day is a gift and you never know when it is your time to go.
I know that’s morbid, but it’s why I developed a more positive outlook. If we are given a brief chance to look back at our lives at the end, will I leave feeling positive about my life overall, or negative?
The Importance of a Positive Outlook
I am speaking from a place of acceptance with my illness, so it’s easy to maintain a positive outlook. We are not all there yet, as we work through the stages of grief post-diagnosis.
Once you reach a space of acceptance, try to look at life more positively. Look not at the series of moments of what you cannot do, but at the moments of what you can. You may be surprised that you can do a lot more than expected. Now re-examine the things you think you can’t do and see how you can adapt to make things happen.
I never thought I could be a runner, before MS and especially after my diagnosis. I did not think I could be a mother. I never anticipated getting into a positive space with my more adversarial acquaintances.
I never thought I could improve as a person, especially after my diagnosis.
And yet, here I am. If I had the opportunity to go back ten years to interact with myself, past me would not recognize present me both physically and in personality. I am a completely different person.
It started when I stopped looking at what I couldn’t do and adapted myself, so I could “do.” Embracing a more positive outlook, I started to say “yes,” to more opportunities to grow. I don’t know if that would have happened without my MS.
The Grace of Chronic Illness
Having a chronic illness is awful. This is never in dispute.
There are difficult days where we can’t get anything done. Where we are so miserable, physically, and emotionally, that we just wish it could be over. But the grace of the chronic illness is this: it teaches us compassion towards ourselves and to others in similar situations. We can share our knowledge and experiences with others who are struggling to navigate their chronic illness.
Another reason why we should view ourselves as lotus flowers: the lotus flower represents compassion and courage. We are reborn in our illness and able to cope in ways we previously wouldn’t expect.
The illness teaches us how much we can endure, and we are capable of enduring a lot. You might discover one day that a friend experiences the same pain you do, but cannot manage it without external help. Meanwhile, it’s a pain you experience daily but manage through mindfulness and perseverance.
It’s not about comparing pain or experiences, but acknowledging that our perspectives and thresholds differ from person-to-person. It’s also about acknowledging what you are capable of doing.
Who you are and who you can be.
It would be nice to have a cure for our illnesses in our lifetime. But that may not be on the horizon any time soon. Waiting for a cure and rehabilitation to change our lives is something we may not have the luxury in doing. Shifting our perspective towards our illness, no longer looking at it as an entirely negative force in our life, can help get us on the path of self-discovery and self-appreciation.
The grace of our illness teaches us to appreciate our lives as they are now and the value of life itself.
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Featured photo credit: Michelle Melton