If I Could Turn Back Time

If I could turn back time, if I could find a way to revisit the bedroom of my youth, to speak to my 16-year old, newly diagnosed self, what would I say to her? What advice would I, with my 28 years of worldly wisdom, bestow upon her? What would I ask her to do differently; better, faster, sooner?

Would I tell her to seize more opportunities?  Perhaps I’d inform her of the benefits of exercise, and implore that she at least start doing the odd squat.  Would I ask her to spend less time in the student union, snakebite in hand, and more time soaking up all of those Sundays-worth of missed vitamin D? 

Would I ask her to seek more support, to talk more openly? 

Would I suggest a more assertive approach to self-advocacy within medical settings? Would I request that she ask more questions, and do more independent research? 

Would I tell her not to waste time on all of the mistakes that I know she made? Will make.

Would I ask her to change her diet, her lifestyle, her outlook, her approach to living with MS?

No.  I would not say any of those things.

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If I could turn back time, if I could find a way to revisit the bedroom of my youth, to speak to my 16-year old, newly diagnosed self, what would I say to her?

I would take her by the hand and say, ‘you’re doing great.’

I would reassure her that she will be ok; that all she needs to do is to keep going.  

Keep moving.  

Keep making poor decisions, punctuated by the occasional good one, because all of it – all of it – is laying the foundations for the life that she is building.  The lessons she will learn.  The changes she will one day make.  

The happiness she will find.  

I would tell her that I am grateful for all she has done for me.  For finding her own individual way of living with MS.  A way that worked for her, and works for me.  

I would reassure her that it’s more than ok not to seek connection with others; that removing the pressure of comparison is sometimes what you need.  I would thank her for focusing on finding her own path.  For the strength, and ingenuity, and autonomy that her experience has instilled in me.

You’re doing great, I would say again.

You’re doing your best with the information, experience, and attitude that you currently have.  Will that information, and experience, and attitude always be the same?  No, of course not.  But you’re doing your best, and I’m proud of you for that.

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I might tell her that it won’t always be easy, but that it will be easier than she thinks because she is so much stronger than she gives herself credit for.

I might tell her a little about the life that she will one day live.  About her contentment, and her writing, and her progress, and the love that she will find.  I might show her the messages from people who have felt supported and seen in her writing and say, ‘look, look what you will one day do’. 

Or I might leave that as a pleasant wee surprise.

I would tell her that she will make mistakes, and not always act with her best (health) interests in mind.  I will thank her for making them on my behalf, so that I don’t have to (at least not quite so frequently).  I would thank her for the lessons those mistakes taught me.  Thank her for being the catalyst for my change, and the work I now undertake to improve my mental and physical wellbeing.

Don’t change a thing, I promise you will have no regrets.

I would tell her not to worry about what she did or didn’t say at her latest appointment, the questions she didn’t ask.  These things have less impact on your overall wellbeing than you think, I would say. You don’t need to understand MS in order to live well with it, I might add, I learned that from you.

I would tell her not to worry that she isn’t “doing enough”.  You are doing more than enough. It is enough just to live, to keep going, no matter how messy that life might feel at times.

Life isn’t a series of neat little tick-boxes, I would wisely proclaim. You don’t move logically from one stage to the next.  Life is messy, and imperfect, and challenging, and all the more enriching for it.  Life with MS is no different.

How else are we meant to learn, and evolve, and change, and grow?

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If I could turn back time, if I could find a way, I wouldn’t change a thing.  

I don’t regret my two “failed” DMTs, I don’t regret not ‘fighting’ to be on a stronger treatment, I don’t even regret not being wholly compliant with my self-injectable as a student. (Friday night flu-like symptoms, or Friday night fun? I was 18, I hasten to add, and didn’t quite understand the point of being on a drug when I felt fine).

I don’t regret the questions I didn’t ask, the research I didn’t do, the conversations I didn’t have.

I don’t regret the diet I didn’t immediately overhaul, the changes I didn’t stick to, the sheer number of cheap pints I consumed.  

MS is long.  Life-long.  I would tell 16-year old, newly diagnosed me that she has so much time to ask, research, learn, understand, develop, connect, evolve: as and when she feels the need to.  I would tell her that it’s a marathon, not a sprint, and that there’s so much life around MS that still needs to be lived and enjoyed. 

I would tell her that she doesn’t need to get everything “right” – whatever “getting it right” looks like when it comes to living a messy, imperfect, beautiful life.

But I think she knew all of that already.

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When I look back I see a life I continued to live in the way that I wanted to, in that moment, however flawed.  

I see a teenager, and a young adult, who did the best that she could with the mental and material tools she had at her disposal.  

Have those tools been sharpened and strengthened over the years?  Have I collected newer, shinier, bigger, better tools as I’ve marched through the passage of time? Hell yes.  

But it is futile to look back and expect past-me to have behaved any differently based on the awareness, and knowledge, and priorities, that I have now.

Instead I see someone who kept going, who just kept moving, whether forwards or backwards or sideways, carving out her own winding path as she went, and I will be forever grateful to her for that. 

If I could turn back time, if I could find a way to revisit the bedroom of my youth, to speak to my 16-year old, newly diagnosed self, what would I say to her?

I would take her by the hand and say, ‘you’re doing great.’

You’re doing great.