The New Normal
As I write this particular section many years after Darren’s injury, I realize my concept of a “new normal” has changed more times than I can remember. In fact, I don’t even know if I can explain these changes well enough to make any sense. I hope I can! I also hope I can at least offer some insight into what this often used term relates to.
If you are someone with an injury or a family member of someone with an injury, you know nothing is normal now. NOTHING. The simplest of bodily functions and physical activities can no longer be performed independently. Scratching your nose, moving hair out of your eyes and wiping your tears are tasks that others must do for you. Moving or shifting your weight to prevent pressure sores must be done mechanically (like with tilting chairs) or by someone else. Eating, brushing your teeth, and getting dressed are all monumental chores and require inordinate amounts of energy if they can be done at all.
What you were doing before your SCI – in Darren’s case a soon to be college student, athlete and part time construction worker – no longer mattered. (It would matter again, but those thoughts were not in the forefront in the beginning.) Even family roles are reversed. An independent young man, scheduled to leave home and start making his way into the world was now a dependent child-like person who needs care 24 hours a day. Even though Darren’s injury was a high cervical level (C5), he was always able to breathe on his own and had no cognitive deficits like those seen in brain injuries. For this I am eternally grateful. Others are not so fortunate and have struggles beyond my comprehension.
During all of our time at Shepherd Center, the world revolved around SCI. The staff was wonderful, other families were very supportive and day trips were arranged to accessible venues. Trips to shopping malls and movie theaters attracted attention from others, but as a group we felt safe and secure.
Returning home to not-so-perfect accessible houses, inaccessible places you wanted to go and people who were uncomfortable with paralysis, wheelchairs and disabilities created our “new normal.” Not being able to take care of himself, not being able to move himself around, not being able to go and do what he wanted – this was Darren’s “new normal.” We adjusted to what had to be done, how to do things differently and what he couldn’t do. This “new normal” was a difficult, unsettling place to be. Constantly figuring out how to adjust to this new life was exhausting. But one good thing was that the “new normal” was changing, too. As Darren figured out new ways to do things, some things got easier. He was ever conscious of needing people to do things for him, and much preferred trying to do things for himself, even if it took two or three times longer. How difficult that was to watch sometimes, but I knew I had to let him.
Over time, the “new normal” became not so new and not so normal, either. Different, yes! No argument there. Life became a constant evolution of adjusting to life with paralysis. No spur of the moment activities; everything had to be planned and prepared for. No eating something new; no telling how the stomach and digestive system would react. No wearing new clothes or shoes that might irritate the skin or cause pressure sores. The list went on and on. All these things can lead to complications and difficult situations.
Today, life is by no means normal to me as Darren’s mom. Does Darren consider his life “normal” now? I don‘t know. Only he can answer that. But I adjust, adapt and accept that life with SCI is better than no life at all. For me, there is still incredible sadness, grief and loss. As I’ve written many times before, I try not to dwell on those emotions. Yes, they come. Yes, sometimes they get the best of me. Crying is my outlet, letting the tears cleanse my soul. Hopefully the positivity of Darren’s accomplishments and commitment to living life to the fullest is evidence enough to shake me up, roll me over and wake me up to the reality that life goes on…………..and it’s a life I want to live, SCI and all that it brings with it.