17 November 2015
You would know, but Steve and I have not been alone in the aftermath. You would know because you are very likely one of the many people who supported us. From the moment I hit the ground, there have been people supporting us – some from a spot a little closer than others. So much energy and life coming our way that it can sometimes be overwhelming. I’ve been loved and cared for, and through it all, I’ve learned a lot about my friends and family. Pain and coping are revelatory, and so are the ways people go about comforting a friend. Many of my friends have shared their own personal suffering, not by way of comparison, but in a search for commonality and by way of reassurance. I was caught off guard by letters from people I had never received letters from before and by messages and thoughts that were conveyed (and are still being conveyed) with such compassion they would bring tears. I’ve even been figuratively knocked into shape by a friend who thought I had more left in me than I might have imagined at the time. I have been made stronger by you.
Now that we’re home, there is a whole new team of professionals here to help. It’s great in many ways, but like most aspects of life, the sheer number of hands can make things complicated. So here are some numbers:
4 – Occupational therapists – one for my personal equipment (bed, wheelchair, shower chair ramps, any other equipment in the home that can make things easier for me or facilitate my independence); one for work (desk, wireless keyboard, makes sure the building is user friendly and even evacuation friendly); one for our house (works with the architect and builder to make sure I can reach light switches, use the kitchen and bathrooms, access the garden); one for driving (assesses me and my capability to operate hand controls and helps us choose a car that can be modified for me to drive)
4 – Doctors – one GP (local who I adore who makes sure I’ve got the medications I need and that I’m rehabilitating well. He also makes gin for fun); one vascular surgeon who makes sure my aorta is good for another 12 months or 10,000 miles; one orthopaedic surgeon who makes sure my titanium frame is fitting in nicely with my actual bones; one neuropsychologist who makes sure my brain is recovering at the expected rate
1 – Massage therapist that I see about every three weeks helping me to keep my muscles and joints healthy and flexible
1 – Physiotherapist who gets me good equipment (standing frame) and keeps me on the straight and narrow with strength and endurance training and with practical skills like transferring (from chair to bed, from chair to car etc)
1 – Personal carer who helps me getting in and out of bed to the shower and back and takes up my slack around the house (cleaning, food prep)
1 – Grief counselor who listens to me and encourages me to increase the things in my life that bring me comfort and joy and decrease the things that don’t. Life advice for everyone really.
1 – ACC case coordinator who holds it all together
I haven’t even met the architect and engineer who are drawing up plans and getting costings for the house access and modifications (ACC may or may not approve – long story worthy of its own post).
I am surrounded by models of caring from the professional to the casual. Lucky doesn’t begin to describe it.
All of this makes me think about my own ways of coping and my own ways of comforting others. I have my own stores of strength put there by my mother’s fine example and hardened and topped up by life choices that didn’t always add up to safety, good health, money in the bank or even sanity. But they were my choices and the lessons have served me well – meaning that at the very least, they have made me resilient. I am, of course, ever hopeful that I will be able to stand with my friends and family in any tragedy or in any imperfect life situation. I am hopeful that my presence will be the necessary balm theirs was for me. I’m learning what vulnerability does for a friendship and how it lends authenticity to words of sympathy or sorrow. I’m not there yet, but I can see a time when I will want to reach out to others in a similar situation to mine to be a voice of reassurance. I’m not sure what form my own contribution will take, but it is important to me that I can keep the momentum of compassion going. You gave it to me and I want to keep sharing it.
Wow, that is an impressive team. I was thinking if your house under renovation the other day when I was thinking about my kitchen that I would like to renovate some time, and have high shelves I can reach. It made me wonder how your kitchen and bathroom and so forth would be. Have figured out ACC are the insurer, so I sincerely hope they don’t turn into pricks so that you can reach all you things.
And I love the idea of decreasing the things that don’t bring me joy.
Haahahha. If the ACC turn into pricks it won’t be about reaching stuff. They contract occupational therapists whose job it is to ensure I can reach stuff as basic as light switches and as complicated as kitchen stuff. I’m sure Steve is sick of hearing me say that I don’t want our house to look like a disabled person’s house … at least not like an institution or a hospital, so if the house does get modified (depends on access), then we’ll have some say in what it looks like and how it works for me. I’ll keep you posted. And yes, decreasing the things that don’t bring you joy – isn’t that great advice? sounds so easy, but I don’t think I thought too much about that in the past. It has become a focus, though.
I know that we don’t know each other well, but you and the struggle you’ve been faced with come to mind often. It’s awesome that you put together this site because I have wondered many times about how things are going. Sometimes I am still shocked, so I can imagine that it hasn’t been easy to deal with it for you. Well this reply doesn’t sound very encouraging, but I guess what I am trying to say is that your story has reached my heart, changing my view on life for the better, which benefits my children and family, and that if anyone was ever a strong enough person to handle such a trial- you are.
Kind words, Danielle. Thanks for thinking of me. To be honest, I still have shit times, but more like minutes rather than days, which is a big improvement. I also find myself wondering what life will be like in 2 years or so, when I’ve gotten so used to the chair and the inconveniences that it becomes normal life. Up to now, I had trouble casting myself forward and imagining my life. That’s getting easier, which I also view as a positive sign. It is in my nature to look ahead and focus on the future, so when I struggled with that in the spinal unit, it made me struggle with everything. Sometimes it wasn’t about grit and determination, sometimes it was just about crying some more until the clocked moved and I was a little further through it. I think those days are behind me, and I’m getting more and more back to normal. I think your comment was very encouraging and very honest. I appreciate it.