To the person trying to hold everything together,
First of all, I am sorry you are going through such a difficult time. Life is not fair and you are being faced with so much. Please know you are not alone.
The first year is very difficult. The grief, the sadness, the fear and the unknown … honestly, I am not sure there is anything more difficult than watching the person you love suffer, knowing that there is so little you can do to make things “better”.
My advice is simple … breathe. It’s what you can do, it’s something you can control, and it’s so important. Taking the time for some quiet deep breaths when things get very difficult can make a difference, a big difference of how you react and deal with the situation at hand. It’s a chance to figure out your next step. It helps to calm your mind. Try it. Box breathing: Breath in and count 1-2-3-4-5, hold for 1-2-3-4-5, breath out and count 1-2-3-4-5 and hold 1-2-3-4-5. Try it a few times with your eyes closed. For me, this technique was very useful, I hope it helps.
What does your future hold? I wish that was knowable. For me what was helpful was to think of the future in phases: SURVIVE, LIVE, and THRIVE.
The first year of a spinal cord injury is hard, very hard. It’s the shock and adaptation of your entire life (your home, family, friends and finances). You did not plan this, it was not a welcomed change, and in most situations it’s not going away. This is what I call the SURVIVE phase. Your goal is to survive, and learn everything you can about this new life. It will be overwhelming at times, definitely exhausting, and certainly expensive. In my experience this phase lasts longer than a year, but the time period does not matter, each of us has a different path.
The second phase is what I call the LIVE phase. For me this phase is where we find our rhythm. Things stabilize (most of the time!), there are bumps and dips but nothing like the roller coaster of the first phase. Personally, I am still in this phase. Our new normal is establishing and I am finding time to not only support my spouse, but myself as well. Right now I am travelling home from a Misogi experience in the US with an online rowing community. I joined this group to help me get strong and motivate me to workout; I need the help. I never thought I would be travelling again, let alone to another country - but here I am, three nights away from home challenging myself to safely break many of my self imposed limits. Did it take a village to make this happen?? You betcha.
The third phase, which I understand is possible after talking to fellow WAGS, is the THRIVE phase. This is where life continues, and both my spouse and I emerge from the grief and live our new life fully. I do not know what this phase looks and feels like for me, as I am not there yet, but I am hopeful it comes!
To my fellow WAGofSCI new to this life that no one wants, please know you are not alone and be kind to yourself. Start with taking some time to yourself and breath. From the strength of your breath, you will figure out the next step.
Hugs.
Manjit Kerr-Upal