This collection of personal stories of people with Multiple Sclerosis (MS), compiled by Justine Martin — who also has MS – and released in 2023, is compelling reading. It not only provides a relatable and reliable means of telling their stories, but it also informs us about this unique condition from the individuals’ point of view, rather than from the pages of a medical book or a television show. What emerges loud and clear from these whispers, is that the disease is indiscriminate in who it strikes; it presents differently with different individuals; it is not a death sentence; it is often invisible. Given these factors, it is timely and important that we know the experiences of those who live with MS and develop an understanding that affords us appropriate recognition of a minority group of human beings who live among us.
The book evidently sings of resilience, and it also contains much wisdom of our shared human condition. It reminds us that the life journey we are all on, provides its teachings in multifarious ways for those of us who are receptive. It is humbling to read of the gratitude of Allyson Brown, who says that “MS has been a blessing in disguise. Without enduring the significant hardships, I wouldn’t have discovered invaluable insights that have truly changed my life.” Or similarly from Colleen Daniels, “Looking back, I see that by either choice or that of MS, I have discovered a courage and determination that, without MS, would never have surfaced. I have purpose now and am content again.” Oh, my goodness. What an oceanic view of suffering is encapsulated here.
All of us have differences and for some those differences present as burdens – for who among us has emerged from childhood unscathed or can claim ‘perfection’ while in the human form – but it is vital not to define anyone by such differences. An inclusive perspective such as, he/she/they are a person who has MS or is neurodiverse or is non-binary or…is essential to build a caring world within which we all have a place for what we have in common, our humanity.
What does a person living with MS ask from us? As Liliana Cuba writes: “I don’t want pity. If you see me walking in an unstable manner, do not feel sorry for me but offer your arm and help me cross the street. I’ll learn from you, but you’ll also learn from me.” Indeed, we will: tolerance, understanding, humility, love.
There is a strong message for the medical profession coming from these MS writers as well, stated by Justine Martin herself: “No-one knows our body better than we do, so why don’t medical professionals listen more to us?” Indeed, personal empowerment such as this is needed for all of us. If we listen to the person who has the disease — or to broaden the context, to the person who is feeling the emotion, experiencing the situation, enduring the loss — and tailor our contribution to them from there, what a more respectful society we will have. How much more will the inherent dignity of all of us be honoured? Once again, from the specifics of the MS context arises wisdom that ought to be universal, a guide to the way we connect with each other.
Whispers of Resilience is a collection of personal stories which are immediate and accessible and valuable for all of us. True understanding of the self — which these writers have achieved by doing their work to know and understand their own selves with a disability — and then living with and through that knowledge – aligning – is the way to live our best life. We owe a debt of gratitude to these vulnerable and courageous humans for representing themselves and for sharing with us what they have discovered. In opening our hearts to their stories, we can appreciate the work we all need to do in discovering our own.