World MS Day 2020: Freedom in Lockdown

For some time now, I’ve been thinking about returning to my blog, and today, on World MS Day, I´m finally taking the plunge.  Several people, including my husband, have basically told me that this decision is long overdue! But overdue or not, I´m back and all the experiences of the last few years will certainly not be wasted. Some will find their way into words; others will be there in the background and yet still guiding what I write. What’s particularly interesting about my decision to return to my blog writing now is that I’m currently in the middle of an MS episode, and have lost strength in my arms, so typing is a real struggle.  I’m writing much of this blog post using voice recognition technology.

Sometimes, it’s not until we lose something in our lives that we truly appreciate its value. On the one hand, it’s sad that it has to be that way.  But on the other hand, it’s only by experiencing the contrast that we can understand the opposite.  How could anyone who had never experienced a storm every understand the intensity of that moment when the sun comes out from behind the clouds? We appreciate the sun, the light, and the day precisely because we have also experienced the rain, the dark and the night. And so our challenges, limitations, and ultimately our mortality can point us towards what it means to live. When we face restrictions, it can be a good time to reassess, to reflect on the value of what we had, what we still have, and the potential for what lies ahead.  That’s a lesson I have to learn continuously. Every time parts of my body stop working (arms or legs so far) I have a choice to make.  I can focus on the frustrations of all that I can’t do, or I can focus on the joys of what is still possible. Since I have relapsing-remitting MS, I can also look forward to all that I´ll be able to do again once this tough spot is over. But since recovery is never an absolute certainty and disease progression can happen at any time, everything I´m able to do right now is valuable.  Every day is a day that we´ll never live again, so it’s worth not taking even the smallest of blessings for granted.

Free to Embrace

We are currently in the midst of a global crisis with the COVID-19 pandemic. This has meant that many of us around the world have been on lockdown. We lost some of our physical freedom for a time, and we’re just starting to gain it back.  In Spain, that lockdown was particularly strict as we were not even allowed to leave the house to do exercise. I realise that the lessons I’ve learned through living with MS have helped me in facing this current challenge. Freedom depends far more on our inner world than on anything that’s outside of our control.  For a time, I along with everyone else, couldn’t go out for a walk.  This time, it wasn’t because of MS (like the relapse I had when diagnosed) but because of a state of alarm due to a pandemic. However, the principle is the same.  Although for a time, I couldn’t do something I wanted to do, no one could take the happy memories of past walks away from me. No one could stop me enjoying at least being able to walk in circles around my patio, and no one could stop me looking forward to future walks, or take away the joy of those first walks once the restrictions began to lift.  Only we can place those kinds of limitations on ourselves. It is possible to physically be in prison, on lockdown, or experience mobility problems, and actually, be far freer than many who are not experiencing those things.  

As my arms fail me, I take time to think of the many ways we can use our arms. We have the freedom to make so many choices every day!  With our arms, we can build up, or we can tear down.  We can embrace (if social distancing allows!) or we can strike a blow. Our arms allow us to prepare nourishing food for ourselves and our families; they also allow us to eat junk food.  Every time we lift a pen or start typing, we choose our priorities.  Words are “just words,” but they have the power to change someone’s day for better or worse, to challenge their perspective, to stand up for what is right (or at least what we believe to be right) and to express our values. With words, we can create worlds, as God created the world in each stage by saying, “Let there be.”  With our arms, we can clean and bring order to our homes or gardens. We can exercise, score goals, do the plank, serve an ace, or get a hole in one.  So many possibilities! And if all of those examples are things that you think you’d never be able to do, then perhaps that’s true. But unless you’ve lost the use of your arms, then that’s probably more because those things aren’t a priority for you and you’re not prepared to dedicate the time towards improving your skills.  That’s fair enough; despite being an avid Wimbledon fan, I´m unlikely to serve an ace anytime soon – unless I were to play against someone who didn’t even know which end of the racket to hold! It’s ok to decide that something isn’t our priority, but where we need to be careful is in ensuring that we don’t place restrictions on ourselves.  “I can’t” is a powerful mindset.  “I can” works better, but only if that belief is then formed into steps that are actions towards a specific goal.

Connections: Lifting Up and Linking Arms

When we talk of “taking up arms,” we are talking of weapons. And the ultimate goal of weapons, whether it be in attack or defence, is to kill or at least for the threat of death to bring about some desired conformity.   So, taking up arms forces us to face the idea of mortality, even if we’re taking up those arms in order to protect ourselves or others from that mortality.  But lifting up our arms (a common act in much Christian worship) is about reaching towards the giver of life and hope.  It is about focussing on someone greater than ourselves. It is about strength in weakness. It’s about life that overcomes both the physical death we’ll all face one day, and the death of dreams. When we raise our arms in worship, we are actually using our greatest “weapon,” and yet in doing so we recognise that our battle is spiritual and not against other humans. We are choosing to adopt a posture of victory, no matter what is happening around us.

I am reminded of a battle in the old testament. I won’t go into too many factual details here, but you can read about it yourself in Exodus 17 if you’re interested. The battle described there was physical and yet it needed to be won spiritually because only when Moses had his arms raised did the battle go in their favour.  Now, I don’t want to focus on the physical battle as such and the purpose of this post certainly isn’t to advocate for war in God’s name.  However, for those of us who follow God, we need to realise that our battles, whatever battles they are, are only going to be won when our victory depends on the One who already achieved the greatest victory of all. That posture of victory happens when the focus is not on what I can achieve in my own strength, but rather on the strength of our all-powerful God.  It happens when we choose to use our arms to hold up the arms of those whose strength is failing.  It happens when we realise that no person is an island and that we need each other.  The word for this World MS Day is “connections,” and that’s exactly what we need.  We need connections: with each other, with our creator, and even with ourselves.

My World MS day 2020 Challenge to YOU Today

Today I´m “celebrating” World MS Day while experiencing such a loss of strength in my arms that there are many things that I either can’t do at all, or that require a huge amount of effort and leave my arms aching and in pain afterwards.  So, every time I decide to do anything with my arms, it’s a choice and it comes down to priorities.  What is worth using my limited arm strength for? What do I most want to achieve today? Today, my last reserves of strength are being used to edit this blog post.  Because I´ve decided that that is worth it to me. I hope it will seem worth it to some of my readers too!

 My challenge to you today, World MS Day 2020, in my name and the name of all of us who struggle with this unpredictable illness, is to choose to bless someone with how you use your arms.  I challenge you this week to use your arms for good in a way that you wouldn’t otherwise have done.  Perhaps someone needs a hug, or you could bake them a cake, or mow their lawn. Maybe you realise that you need to raise your arms (either physically or metaphorically) to the One who has the strength to help you. Or maybe you need to support someone else whose arms are falling and who’s losing their battle.  Maybe it’s time to write that letter or send an email to encourage someone.  Remember, with our arms, we can build up or we can tear down.  Know that no matter what lockdown you are currently experiencing (whether due to COVID-19 or other life circumstances), your freedom depends more on your mind than on any physical restrictions.  Some can do more and some can do less, but we can all make choices, we can all set goals and we can all respond in some way. Please use your freedom wisely. It’s a gift. Make every action count.   

I will end this post by sharing a poem that I wrote for World MS Day last year:

 Please Know
By Rachel (written for world MS day 30th May 2019)

If my legs stop working- again
And I can no longer walk,
Please know,
I´ll keep going on wheels.
My mind will lift me to the heights;
I´ll still keep jumping the waves,
Still keep dancing on sand and climbing up mountains.
Please know,
Please always know,
That is who I am.

If my arms stop working- again
And I can no longer write,
Please know,
My words won´t just fade away.
If my speech slurs and my mind slows,
I´ll still have something to say.
I´ll do my best though my best be less than before.
Please know,
Please always know,
That is who I am.

If my eyes go blurry or blind
And I can no longer see,
Please know,
I won´t forget the sunshine.
I may cry before the rainbow;
I may stagger in the dark,
But no matter the path ahead, I´ll seek insight.
Please know,
Please always know,
That is who I am.