There’s nothing like a medical diagnosis for imposing limitations upon us. Of course, we have to be careful to ensure that those limitations are from the illness itself and not from our own mindset. That’s often part of the battle. Others may also want to impose limitations upon us, depending on their perception as to what we should be doing.
Freedom in Pushing Limitations to Their Limit
After I was diagnosed with MS, I found that many people had an opinion as to what I should or shouldn’t do, and I wasn’t very good at meeting their expectations! Shortly after my diagnosis, I bought a lolo ball (do you remember them from childhood?) and jumped up and down on it every day! I also walked a lot. I’d experienced not being able to walk and I wanted to get back to full capacity as quickly as possible. Above all, there was freedom in moving, in walking a little further each day. I found freedom in pushing my limitations to their limit.
Adapting to New Limitations
Some of you will have seen from a previous post that I was meant to be walking the last 112K of the Camino de Santiago last week. In the end, it didn’t happen because everyone else in my group pulled out on me at the last minute. The new plan is still to do the whole 112K but a day at a time rather than a week all at once. I was disappointed and wanted to go ahead and do it anyway. I tried to find the way, but I couldn’t see how it would be possible to continue as planned for that week. My husband was reluctant for me to do it on my own, having visions of my legs buckling from the MS and of me being left on the roadside alone. Apart from MS I also have back problems, and I hadn’t trained to prepare for carrying my backpack. We were going to take a support car with us. In the end, I accepted the change (for the time being!) and so far we’ve walked 24K in a day. This is just the beginning. Sometimes, events outside of our control place limits upon us. We can kick against them, or we can adapt our plans but still refuse to give up.
My Current Limitations.
I’ve been struggling over the last couple of weeks with MS symptoms. My left leg goes crazy at night time, producing sensations that range from feeling as if there were spiders or small animals crawling all over me to feeling as if my leg were burning. I’ve had several disturbed nights because of that. So maybe, just maybe, it was better that I didn’t do the whole walk at once right now. But don’t be the one to tell me that, because I’ll disagree with you! 😉 I really wanted to do it all at once and I would have done. The 24K hike that I managed was even more meaningful to me precisely because of my recent challenges. They’ve reminded me that MS is active, still in my body and can strike at any moment. I cannot take anything for granted. Each moment is a gift. Every step is a victory.
Every step is a victory Click To Tweet
Overcoming Our Limitations
Rain was forecast for the day of our hike, and it was wet and cold. In spite of that, I felt excited that finally I was doing part of the Camino de Santiago. I was determined to enjoy the moment and not allow my disappointment at not being able to continue to take away from that. There were a lot of steep slopes. I was so glad to have my hiking poles. I’m not sure I would have managed it without them.
The ups and downs of the walk seemed symbolic of living with relapsing-remitting MS. I appreciated the flat bits all the more because of the steep climbs and descents. The steep bit was not something to put off doing. I was focussed on the goal and so wanted to get over it. I stopped to take in the beautiful views. So many tones of green. So much beauty to take in. So easy to miss it in the midst of the challenges. I made time to stop and rest, to feel the rain beating down, to grasp the rays of sunshine. Every moment was precious. I think I smiled a lot of the way. The last descent was a killer. It was steep, and I used my hiking poles to take all of the pressure off my knees. Then we arrived at Portomarin, to be faced by a steep flight of stairs. Since the MS episode three years ago, I struggle with stairs at the best of times. After a 24K hike, it was tough going. What an amazing sense of achievement and victory once I got to the top! I didn’t feel that I could take another step that day. It was meaningful to me because that same urge to keep going is what will serve me no matter what this illness throws at me. I know that sometimes I may stop just a little later than is sensible, but that same determination is what keeps me going in the first place. It’s a journey towards finding the balance.
Trying to Impose Sensible Limitations on Others
On the way back from Portomarin to Sarria in a taxi (yes, we got to do the way back the easy way!) the taxi driver was talking about someone who’d done the Camino with an injury and what was the point of it. I could understand where he was coming from, but I related more to the injured person who was determined to push through.
I get setting a goal and wanting to meet it. I get focussing so much on the goal that you ignore your physical obstacles. I get that desire to overcome. I was too tired to respond to the taxi driver, so I enjoyed my achievement in silence.
Many may consider it senseless to be walking wounded. It doesn’t seem that way to me though. It’s not a masochistic desire to keep going no matter the pain. It’s more about learning what our true limitations are and being prepared to push the boundaries. Perhaps we’re able to do more than we thought. If that’s the case, perhaps we’ll deal with this terrible life challenge that we’re facing, whatever that may be. We’ve already experienced having our health taken away from us. We already know what it means to be in pain. It might not be the worst thing that can happen. Sometimes that fear is taken away because we’ve faced it, or sometimes we’re running away from it. Perhaps a bit of both.
Why Do We Push Against Our Limitations?
I think for many of us, it’s about survival. It’s almost a reflex symbolic reaction towards dealing with challenging circumstances. Both as a dramatherapist and as a Christian, I know that symbol and ritual are an important part of human experience. We use symbols to acknowledge significant life events. We use symbols to remember. We use symbols to grieve. For those of us with a terrible diagnosis, or watching a loved one facing such a diagnosis, a physical challenge such as the Camino can become our symbol. It can be the symbol that expresses that we are not our illness. It’s the symbol of finding the strength to face the challenge, the symbol of keeping going and of not giving up. It can be a symbol that says that even if one day this illness knocks me out, at this moment I have experienced what it is to overcome. This is me. This is living. This is joy and hope. This is my choice in the midst of many choices that have been taken away from me.
Even if this illness knocks me out, I have experienced what it is to overcome. Click To Tweet
So when we see someone with health problems insisting on undertaking a physical challenge, maybe it’s part of their survival technique. Maybe it’s more than stubborn craziness. Maybe they’re making the sensible choice for their emotional wellbeing. Maybe it’s that very challenge that breathes life into them and helps them to keep going each day. Maybe being sensible isn’t always about protecting our health to the detriment of being true to ourselves. Sometimes it’s a matter of priority. If I want to do something enough then perhaps the potential risk is worth it to me. That’s a very personal decision. For those living with chronic illness, it’s a decision that we often have to make every day: what is it worth spending my energy on today? The resources are not infinite. We learn to make better use of them because of that. Illness takes much of our control away. It’s empowering deciding how to respond to that. So please, think carefully before giving an opinion on how anyone should respond to their challenges. Our response needs to be one that helps us to survive, to live and to grow. I’m not recommending putting our health at risk. I’m merely questioning what putting our health first actually means. Survival and well being are more than merely physical.
MS Has Its Limitations
The next day I ached as anyone would ache after such a hike. I danced around the house telling my husband that I had normal pain and that I was normal! None of the aches were in any way associated with the MS. The hiking poles had done a good job of protecting my knees from the weakness caused by MS. All my muscle aches were in my thighs and not lower down where the MS damage has been done. The symptoms in my left leg didn’t get worse with walking or get better on the days when I didn’t. On this occasion, there were no MS consequences to my walk.
“Stuff you MS! You may wake me up at night with your burning sensations. You may cause me pain. Your sudden unexpected sensations may cause me to cry out and feel moments of fear. I am not in control, but neither are you. On the 25th April, on those slopes and steep descents, I beat you. No matter what the future holds, for that moment, I got to experience what it is to overcome. Your power will always be limited. You are not my identity. “
You Have to Keep Moving Forward
This post isn’t about trying to convince you that I’m amazing for doing a hike when I have MS. Please remember that I’m no more amazing than those who are unable to do such a venture because they’re now in wheelchairs. They must find other ways to battle and to fight this horrible illness. As Martin Luther King said,
“If you can’t fly, then run,
If you can’t run, then walk,
If you can’t walk, then crawl,
But whatever you do, you have to keep moving forward.”
-Martin Luther King Jr.
It’s about keeping going. It’s about allowing each person to find the way to combat their battle the best way they can according to their circumstances. It’s an argument that sometimes the “crazy” way that people respond to challenging life events may be exactly what they need to do in order to preserve their identity.