My Mum has always been my biggest supporter and this year at Christmas she gave me a bangle with the words “Choose Your Hard” engraved on it. Inside the box was a small card that read:
Life isn’t always easy, and we all have our battles to overcome each day. We do however get to choose how we feel and how we live our life. There is always going to be difficult choices to make, but remember – YOU get to choose your hard.
I’m going to come back to this.
First, let me introduce you to MAKING STRIDES TV.
MSTV is our new YouTube channel where each week we will produce new video content for YOU. For anyone at home who can’t physically be here at Making Strides but wants to begin their journey, taking those first steps towards a new and improved you.
It is our New Years resolution to reach out and share the knowledge and lived experience of those within our walls and those whose advice has impacted us enough to share it with you.
On the first day of each month we will post a new blog that will introduce our topic for the month. Every Sunday we will release a new video pertaining to that topic.
But wait, there’s more!
Every Tuesday will be ‘Trainer Tip Tuesday’ and you will hear directly from our Exercise Physiologists here at Making Strides.
Videos from Making Strides TV YouTube channel will be shared on both Facebook and Instagram platforms.
I would encourage you all to join our group for Making Strides clients, friends and family: www.facebook.com/groups/makingstridesfam where you can safely discuss the ideas raised and advice given and share your own experience – with each other. You can ask our trainers questions or seek answers from people in a similar situation to yourself.
We are kicking January off with our first topic: Returning to Real Life: What Now?
Following a spinal cord injury many people look forward to their expected discharge date with great anticipation. There are numerous barriers to overcome before this can be possible: reach a level of functional independence that satisfies your treating team, source funding, script your equipment (wheelchair, shower commode and assistive technology), complete house modifications, arrange carers; the list is quite exhausting and a lot to have completed in 3-12 months.
Finally, you’ve been discharged but what now?
This experience is yours and yours alone, no one can tell you how you should react or cope but you can be open to advice. Accept it graciously but the choice to act on it is yours.
So, without further ado I give you: My advice.
CHOOSE YOUR HARD.
Give yourself time. Time to grieve and time to adjust. This isn’t a race and no one can run it for you. Make yourself familiar with the stages of grief and try to be as self-aware as possible about your coping mechanisms when dealing with this trauma.
I have watched many friends indulge in things that give them short term pleasure only to find themselves suddenly realizing years down the track that they never reached a stage of acceptance and they struggle to find any long-term joy or meaning in their life. It’s truly heartbreaking. So please, grieve. But make sure you make it through the other side.
Learn patience and be at peace with accepting help. Things take time with a spinal cord injury, letting this get to you will only bring you down. Learn to accept help to make these processes easier.
Im still struggling with this one. Not that long ago when I was at the beginning of a new relationship I refused to allow him to put my wheelchair in the car for me, for a very long time. I was trying to remain as independent as possible and ensure that he knew that I didn’t need him around. Acting in this way only builds walls and barriers within your relationships. Maintain your independence but know that it is ok to accept help.
Be accepting of change. Many people try to hold on to things from their past, not willing to let go and accept their new life in the hope that it may be temporary. Holding on to the past will only restrict your future. Make allowances for changes and modifications that will help you move forward.
I’ve got a drawer in a room at home with a pair of pyjamas in there. These are the pyjamas I was wearing the day of my accident. They’re 14 years old and they still look brand new, they don’t fit me and they never will. But I can’t seem to let them go, I don’t think I ever will. They’re one of the last links I have to my old self and Im ok with this but when you are holding on to a two storey house in the hope that one day you may be able to walk up the stairs again – then we have a problem. You’re placing restrictions on yourself and building your own barriers to moving forward in life.
Find gaps in your independence. Create your own routine, what works for you, and then find gaps in your independence. When these gaps become clear you can set goals for yourself and work towards achieving a greater level of independence.
I was discharged from hospital and returned home to Mount Isa to live with my family. The community fundraised enough money so that we could install a demountable in the back yard, this would give me a moderate amount of privacy and perceived independence. The problem was I had a carer coming in each morning and my Mum at my beck and call for the other 22 hours of the day. My mum was just being supportive, she is very caring and ultra-protective, so any time that I appeared to struggle with anything she was there to help me.
However, there is such thing as too much support. After two years of living at home I realized I wasn’t moving forward and if I didn’t do something drastic I might just end up moving backwards. So, I moved to Townsville, in just one day I went from having 24-hour support to having no support. I washed my first dishes in two years and did my own laundry. I learned how to clean a house, do my shopping and bought myself a puppy – something that relied on me to take care of it. Finally, I had real independence and a sense of responsibility. I went to uni, I got a job and I paid bills. With independence, I found purpose and I haven’t looked back since.
***Having found my independence, I now have the luxury of calling my Mum when things get too hard. She makes the 2-hour return trip to my house and washes those sheets I’m too tired to do or cleans the kitchen I’ve neglected for so long. Thanks Mum.
Stay positive and set goals. Stay positive, it’s such a cliché. But it works. This is where choosing your hard comes in. If you wake up and decide you’re going to have a bad day because you have a spinal cord injury – there is a 100% chance you’re going to have a bad day. Focus on the good things you have in life, nurture your relationships and try to look for the positives in every situation. Positive thinking leads to positive outcomes.
Set goals. Set some smaller achievable goals and then set some big picture goals. Every day get out of bed and do something to work towards achieving these goals.
I have a habit of letting work get in the way of some of my goals – just ask me how many times I’ve trained in the gym since my July blog. I’m not punishing myself for that though, there is no failure. As long as I remember to take steps in the right direction towards achieving this goal where possible, I’m happy with that. The intention and effort is there and that is enough for me.
Be open to new and different experiences. Don’t abstain from doing something you enjoyed before your accident just because it won’t be the same. If you enjoyed cycling – try a handcycle, loved swimming – get back in the water, horseriding – it’s still possible!
Please PLEASE do not eliminate things that used to bring you joy from your life just because they are not the same. Find a way to take pleasure from the new way you experience them. Trust me, it’s worth it.
Be social. Get out of the house. Connect with your friends, meet new people and get back out there. After the Making Strides 4th Birthday party a client thanked me for an amazing night and commented that it was the first time since his accident a year ago that he had been out socially. This really hurts my heart that people have experiences like this.
I was lucky. When my plane landed in Mount Isa after my discharge there were 30 odd people waiting there for me, cheering to have me home. They all came back to my house and we partied there until the early hours of the morning. It was a welcome back I will never forget. The very next weekend they were back at my door – the local race day was on and I was going with them whether I liked it or not. I never hesitated and I still don’t. I will forever be anxious in social settings, being the token girl in a wheelchair draws a level of attention that I am still uncomfortable with but that is a small price to pay for the memories I have made.
That being said, heading to the clubs with 10 of my Strides fam all in wheelchairs right behind me draws more looks than you can imagine but I wouldn’t have it any other way. I’m bulletproof with that lot around me.
So take a leap. Call a friend and meet them for beer. Now.
Focus on healing. Define what that means to you and do it. Whether its clinical trials or talking to a psychologist. Training at Making Strides or making sure you take your vitamins in the morning. Choose your own path and then commit to it. This body of yours as broken as it may feel needs to get you through a lot more life that you have to live, so take care of it.
Don’t let your disability place limits on yourself. Your injury level does not define you. Don’t ever let anyone tell you that you need not try something because people with your level of injury generally would not achieve that.
In the same sense don’t look towards others of a similar level and feel inadequate because you are not as capable or independent as they are.
DO NOT look towards anyone lucky enough to have made some recovery and think that you should have done something more, that you could have tried harder or that they just wanted it more than you did. Your injury is unique and is yours alone, so is your recovery.
Live up to your own expectations. Do what makes you feel good not what others expect from you. It is not your responsibility to make others feel good by being the ‘inspirational always happy person with a disability’. It is ok to not be ok.
Some practical advice I wish someone had told me all those years ago:
Learn to budget. Disabilities are expensive.
Wheelchair skills and strength will set you free.
Fashion is your friend. Find what works but don’t lose your identity.
Get an accessible car ASAP. Don’t just buy a car that looks good if it isn’t possible for you to put your chair in independently. A car is your greatest tool to your independence. Choose wisely!
I’m done writing now, so I’m sure you’re done reading – I’ll let the weekly videos say the rest!