I walk because I can walk
The week before, I’d been walking for hours in the Lake-district. Now, I was exhausted and all I’d done was to drag my legs up and down a hospital corridor. Admittedly, hospital corridors are not the shortest, but I’m a walker, accustomed to daily, brisk walking. A hospital corridor should have been an easy stroll for me. Believe me though, they seem to grow to the length of a marathon when you are in the middle of an MS episode.
The walk back from the MRI to the emergency waiting room seemed longer than before though. I gripped onto my husband’s arm, using him as a walking aide. I could barely lift my feet off the floor and my legs would buckle from under me. Both doctors and patients, looked at me in some concern as they passed me on my journey. I’d barely had time to sit down when the nurse came over to me and informed me apologetically, that they needed me to go back to the MRI machine as they needed to do a scan of my neck. I can’t remember what her exact words were but I understood that there were concerns over something that they’d seen in my brain (no wisecrack comments! 😉 and they needed to do a more detailed scan of my neck.
Apart from the fact that it’s not pleasant to discover that your brain has something that shouldn’t be there, I had no energy left to walk. Trying to set aside images of brain surgery, I resolutely set off to face the long corridor again. I managed a couple of steps out of the waiting room, took one look at the corridor and realised that I really couldn’t do it. Turning back, I called out to a nurse and asked her if I could have a wheelchair. I probably shouldn’t have attempted it before, but I was too stubborn to acknowledge my limitations. It’s hard to explain what that moment was like for me. Although I’d spent the last week convincing myself, and attempting to convince everyone else, that it was probably nothing serious, my body was failing me. In that moment, I was forced to face the fact that whatever was going on was likely not a minor problem. I remember being aware of how admitting that I needed the help of a wheelchair and sitting in it when it arrived, took just as much strength as struggling up and down the corridor had done. It was like a nugget of learning as I realised that sometimes being strong means pushing through and sometimes it means painfully admitting that you need help and being humble enough to accept it.
A Wheelchair Ride closer to Diagnosis
I grasped that moment and filed it in my new “if this illness is serious I might need this lesson for later” file! Then off we set back down the corridor, my husband struggling to get used to pushing the wheelchair. Back at the MRI waiting room, the receptionist smiled at me in sympathy and I quipped that I was just saving my energy for later. This time, I chatted a lot more with the technician, as she was asking me questions about my kindle and later had to put a drip into I me. We had good rapport. Then I was back in the machine. Head and neck scans are less claustrophobic because the headgear they place over you has a little mirror and you can observe the technicians at their work. I observed the technicians as they watched the screen in front of them. Sometimes it’s hard to be intuitive, to pick up on information that another person doesn’t mean to communicate and that many people would probably miss. It was just a slight gesture as her colleague pointed something out to her. That tiny gesture of dismay told me that something was definitely there and that she was gutted for me.
This time the technician took me back to the emergency waiting room and there the main nurse was waiting for me. She informed me that unfortunately they needed to admit me and that the dr. would come to talk to me straight away. That was the longest journey of my life, and it took place in a wheelchair. We travelled through the maze of corridors, up the lift, to a ward and then to my own room, the nearest to the toilets. As we travelled, all that went through my mind was that I must have a brain tumour. I didn’t consider the possibility of anything else. I wondered whether it was cancerous. My Mum had just started chemotherapy. I prayed that I would have the strength for whatever was about to happen. I wondered how my family would react to another terrible diagnosis. It was a surreal moment when time seemed to go slower and my whole future was a question mark.
The Joy of Not having a Brain Tumour!
When the dr. gave me the diagnosis of multiple sclerosis, I felt the strangest of feelings. The first feeling was enormous relief. I didn’t have a brain tumour; I didn’t have cancer. Then I started to cry. I wondered whether I would ever walk again. The image that I had in my head was one of a woman that I worked with for five months after I finished my dramatherapy training. I was working in a day centre for adults with disabilities and she had multiple sclerosis. I met her a year after diagnosis and she was in a wheelchair, using a catheter and unable to feed herself. Her husband had to use a hoist to get her in and out of bed and understandably, she was depressed. That was my image of multiple sclerosis and I was devastated. Later I was told that I would almost certainly recover and be able to walk again but that I would probably suffer similar attacks in the future. I determined that I would make the most of every step.
Walking After the MS Diagnosis
Ten days later, I walked the corridor for the first time. I had a physiotherapist on either side of me supporting me. I struggled to keep my balance and my legs buckled beneath me. I fixed my gaze on the end and walked. It was painfully slow, but I was walking! After I was discharged from hospital, I built up the amount that I was walking every day. In the beginning my targets were local cafes! I walked to one that was a little further away each time. Soon I was walking the 2 miles each way to my physiotherapy appointments. I continued to experience electric shock like symptoms and sometimes my legs would buckle beneath me. Sometimes, they still do. Some people thought I was pushing myself too hard; thankfully my dr wasn’t one of them! Others saw the way I got back into walking as a sign of strength. There’s nothing strong about walking though. I walk because I can walk. Yes, I pushed myself. Yes, I made the decision to keep going. But, so did I make that decision when I sat in that wheelchair to get back to the MRI machine. I wasn’t going to remain in the hospital corridor. I wasn’t going to risk falling over. So, I kept going and I sat down and allowed myself to be helped. That was a moment of strength.
Sometimes it Takes More Strength to Sit Than to Stand.
At the end of next month, I’ll be walking the last 113 kms of the Santiago pilgrim route. It will be a challenge. I will walk and walk and walk, with others from my MS association. And maybe some people will say that I’m strong, but really I’m just walking because I can. I’m walking because part of me wants to say, “Stuff you MS!” I’m walking because maybe if I keep walking and walking, I’ll keep my distance from this horrible illness that once took that away from me. The illness that can strike unawares at any time. I walk because I can walk. I will walk and think of those who cannot. And although my experience was only brief, I know that sometimes it takes more strength to sit than to stand. Sometimes it takes more strength to accept help than to keep fighting without it. So, when you see someone in a wheelchair, don’t look first at the wheelchair; see the person. Maybe they have had to fight the hardest battle of all and maybe they won. Don’t see weakness but look for their strength. I will walk because I can walk but don’t see me as being stronger now than I was in that hospital corridor. Don’t see me as being stronger than those with MS, or any other illness, that are in a wheelchair. It’s got nothing to do with strength. When your body fails you, it fails you. And then we each decide how we will respond. I walk because I can walk.
Wow! I so admire you! Please let us know how it goes!
Thanks Caroline 🙂 I will definitely let you know how it goes. I’m hoping to get quite a few blog posts out of the experience!
Thank you for sharing that Rachel. I will be with you in spirit, every step of the way.
I love your writings. You are an amazing lady and a true fighter. Keep fighting xx
Thank you Caroline. I appreciate the support. Maybe one day you’ll do it with me?! If anyone knows what it is to be a fighter, you do. Let’s both keep fighting!
Wow, what an accomplishment that walk will be. And not just for someone with MS. That’s a long walk for anyone. Can’t wait to hear about it!
Yes it is long and I’ll only be doing the last part of it! I help at a hostel on the route a few times a year so get to talk to lots of pilgrims. Many of them are doing it because of some deep challenge in their life. I worry that my legs will buckle (they probably will) that I’ll be dragging them and won’t have energy. Then I remember how much I want to do it and it’s only a week or 9 days at most and I feel energised and excited. The challenge is kind of like an intensified symbol of what life with MS is like. I hope to get lots of life experience and writing material!
The Camino has been special for me ever since watching “The Way” with Martin Sheen taking the lead. A must see..
Hi Stephen. Yes, I’ve watched that film twice so far. The first time, as a West Wing fan, it took me a while to get over “the president of the United States” doing the camino. The second time I was able to let go of that 😉 I see so many real life stories which are just as moving as “The Way” when I help at the pilgrim hostel a few times a year. There are deep moments of connection between people on the Camino.
hi Rachel, with every post of yours, getting to know you more, my admiration grows more! “When your body fails you, it fails you. And then we each decide how we will respond”. How true! I don’t know how to explain, but I kind of feel so much depth in those words!!! Anyways, waiting to know more about the walk! Be the awesome person you are!!
Thank you Aish. That’s so sweet. Thanks so much for your encouragement. I look forward to getting to know you better too. “When your body fails you, it fails you. And then we each decide how we will respond” To me that’s about the fact that we can’t always control what our body does. Those of us living with chronic illness or with infertility know that all too well. Our body may fail, but we always have the choice how we respond to our life circumstances. I find that empowering.I want to shout out to the world to look past the limits that our bodies may place on us. We are more than that.
I loved the way you explained that thought in detail. I mean, I could feel it but could have never articulated that like you did! I’m happy to know that you find the choice empowering. Moreover, it’s great that you share this perspective here. It certainly gave me a positive outlook on my circumstances!!
Sometimes it’s only when I start writing that I realise what I can articulate 😉 So glad that’s my thoughts are helpful to you on your journey 🙂
Reading this post very much reminds me of the thoughts and feelings I had at the time of my diagnosis. You captured the experience very well with your writing. Accepting the help of a wheelchair or other assistive devices is humbling but sometimes so necessary for energy conservation. A dear friend of mine stubbornly refuses to use anything and therefore chooses to be housebound and then complains of loneliness. A wheelchair would open up the world to her again, but her pride holds her back. It does take strength and courage to accept help just as much as choosing to walk when able. i started going on walks again two weeks ago. I started yoga as well. i have had a bad year and it is time to get moving again. Thank you for writing this. i also liked your about me page and look forward to your future posts! Blessings!
Hi Leslie. I know it’s easy for me to say, because my experience of a wheelchair has been minimal, but I agree with your thoughts on it. I remember telling myself as I sat in that wheelchair for the first time, that this was merely a tool to help me to keep going. I decided then that I would view wheelchairs in that way. I’ve also come to see that any walking aid is just that, a help to keep going. The image of a wheelchair is probably one that hangs over those of us diagnosed with MS. I don’t spend time worrying about the future now, but it helps me to view wheelchairs in that way, a tool to keep moving forwards if our bodies can’t do it on their own. Thank you for sharing about your own journey. I wish you well as you continue on your walks and look forward to seeing you back here. Many blessings!
Hi Rachel,
I just love your blog! Each post I’ve read is so authentic- and full of hope. This whole article really spoke to me. We never know what life is going to throw us- you said- ” I determined that I would make the most of every step.” What a beautiful mantra. I’m so thankful the Lord is with us- in our standing, in our sitting, in our walking, and our resting. Praying the Lord surrounds you with His presence daily and lifts you up on the wings of eagles. hugs and blessings
Cindy Barclay recently posted…My Shocking Discovery About Inclusion
Thank you Cindy 🙂 and thanks for sharing this post on twitter. So glad that this spoke to you. Our challenges may be distinct, but we each need to discover how to “make the most of every step” I do enjoy walking a lot. Probably few people enjoy it more than I do after having experienced not being able to do it. Of course, it’s also a metaphor for life too isn’t it?? We need to make the most of every moment. Thank you for your prayers. God is my stength 🙂 Hugs and blessings back to you.
Rachel recently posted…Forgiveness and Platitudes
Hey Rachel,
I’m standing up right now applauding you my dear. I know you can do anything you put your mind to.
I’m sorry you received this horrible diagnosis but I know you’re young and as the doctor’s said, you will recover. I can only pray and hope that like with most other diseases that they’ll come closer to actual cures in the near future that will benefit so many who are struggling to just deal with it every single day.
My Dad fought cancer for 42 years of his life but his doctor always told him that wouldn’t be the death of him and it wasn’t. He was diagnosed in his late 30’s and lived to be 80.
I know the walk is this month and I’m rooting you on. You’ll do great and make everyone so proud. I hope you’re doing well Rachel, hang in there.
~Adrienne
Adrienne recently posted…The Most Exciting Thing I Heard About #SMMW15
Hi Adrienne,
How wonderful to see you over here on my blog 🙂 Thanks so much for stopping by.
It’s definitely very encouraging to see all the advances that they’re making with MS at the moment. 30 years ago they didn’t have anything to make much of a difference. Now I’m on daily injectable medication that prolongs the time between attacks and can delay the MS getting worse. They’re working on a medication that could repair damage already done. That would be amazing! There are definitely lots of reasons to be hopeful. I believe a cure in my lifetime is a real possibility. I’ve read the research they’re doing.
Thanks so much for your standing ovation 😉 and for rooting me on. In two weeks time, I’ll be doing the walk. I’ve been doing lots of practice walks, but not as far as I’ll be walking each day when I do it for real. I have been having some problems with my legs over the last few weeks, so this walk is likely to be a challenge. I’m intending to push on through though. I really want to complete it. I’ll picture all my supporters rooting me on when the going gets tough. Thanks for being one of them, Rachel