God made the Earth round so that we would never be able to see too far down the road.
-Out of Africa, Isak Dinesen (Karen von Blixen)
I really like this quote from the movie and the book. It is so fitting to all things that happen in life, as you don’t want to be able to see too far ahead as you would perhaps make alternate choices, be scared, lose faith, or perhaps take a different road. But the roads we have chosen make us who we are. You cannot escape all the bad or troubling things that happen in life. Otherwise, it would not be a life. The life we live is the life that includes all the joy, smiles, laughs but also the pain, the grief and the sorrow that comes with it.
I am writing now as it has been 9 years since Tom’s aneurysm. It really is hard to believe, as it actually seems like yesterday. Getting that call, trying to get home, sitting in the ICU for 3 days straight. The 3 months in the hospital, the years of recovery, therapy, and trying to regain what was lost. The pain, the worry, the thought of what will be the future was so frightening. But we tried to find some hope each day. It wasn’t always easy.
This weekend, I have read through all 200+ pages of the Caringbridge journal and all the comments from 2011-2012. It is really surreal to go back 9 years and relive where we were then. But, we got through it and came out the other side with more gratitude, with more caring and with Tom with us when all the signs were that he would not survive. Most of what strikes me, is the hope that we all had then. The hope we had that he would survive, and the hope that was shared. No matter the dire situation, the setbacks, and the challenges we had to face, all the messages were of hope and support, and I believe it is that hope and the prayers that so many of you all shared for us, helped to take us through this difficult time. And many of those people are still our support team now that helps us throughout the year. We are grateful.
Tom still works hard every day to manage through his day. He came home in a wheelchair, unable to walk, unable to communicate, unable to even do the most basic daily tasks. Sam and I had to learn every day what to do and focus on the things that he could do and not what he couldn’t do. We found speech therapists, physical therapists, occupational therapists, eye doctors, neurologists, doctors, caregivers, support groups, our own therapies to help navigate through the life we now had. Tom still requires full time, 24 hour care. He has only a 3-7 minute memory. Just imagine that. Living like that. Being cued up for everything you do all day, from the moment you get out of bed to when you retire for the night, having to be told what to do. I can’t imagine, and every day, I try not to get frustrated. Knowing that he can’t help it. It seems that is has all become our normal now, having people caring for him when we can’t be there. It was a hard thing to get used to for me. But again, it is just a different life than I had imagined. He has no executive function of the brain – he is only in the present. Not knowing what he did a few minutes ago to not knowing what he is going to do next. Crazy the way the brain works or the damage that can be caused. Tragedy, it will change the projectory of your life. This experience created a dividing line in our lives. There becomes everything “before” the illness, and then everything “after” the illness. The life is not the same and will never be.
I keep this in the back of my mind all the time…”Even the darkest hour of our lives only has 60 minutes”. If you can get through the hour, you can get through the next hour. And then the next day, the next week and the next month, the next year. And now, see where we are. 10 years.
I would ask myself all the “what if’s” …and the paths our lives take. But lives are not a series of “what if’s”. It can’t be or we could never move forward. We would be paralyzed. And, we have lost people along the way, along this path of life, but I always ask and keep in mind, that we may not end up walking as far as we would like. But are we happy with the trail we have left behind us? I hope the answer is yes. Yes to our actions, to our passion to our caring for ourselves and others. Doing what we said we would do. It should be intentional.
I do believe that grief/loss and love are intertwined. You can’t have grief unless you have loved. The level of grief we still have and that you have in losing someone or losing the person we knew, is more or equal to the love you have for that person. Whether the person is no longer on this earth or just that the person is injured that has changed them forever, grief is part of the acceptance process. You have to reform yourself around a new way of life. Toms’ new way of life and how to make his life meaningful.
Through all this, family life has moved forward – high school, proms, graduations, college and all the wonderful things life has to offer. We include Tom as well as we can with the limitations, but it also has its level of ups and downs, tears and smiles, frustrations for us all because we want it to be back to the way it was. Things that he misses – Father Daughter weekends at the University, football games with Sam, visiting her at school. Seeing her thrive. However, we know, he may perhaps be imperfect now, (in the sense of his brain injury), but he can still have perfect moments with us.
One of our greatest gifts is our daughter Samantha. She has dealt with this situation and with the “loss” of her father with grace and much compassion. She is always there to help. She saved his life, literally. The 911 call, I have not listened to for almost 10 years…it is too shattering to hear. However, as an 11 year old, when she needed to do the right thing, she did. She made the call. I know it has been hard. That seems to be an understatement. While in middle school, Sam wrote school paper about her Dad, and what happened. There is a line she wrote that still grips my heart…”I no longer have the Dad I used to know, but I will always have the Dad I love.” She is quite something and it is so nice to see her spread her wings and follow her path in life.
At the end of the day, this is our life. Crazy as it is, it just is ours. People have worse things that happen. We all in our time think what happened to us is the worst possible. But it really isn’t. It is bad, horrible for us…but not the worst thing that could happen. The bravest thing we all can is to accept the world with gratitude, the way it is. I have learned to love the thing that I wish most had not happened. It is a gift to exist. It is a gift for Tom to have survived. With life and with our existence, comes suffering and there is no escape from that. You have to accept both, because, what is the option? Accept the life you have with gratitude. If you are grateful for your life, then you have to be grateful for all of it. You cannot pick and choose what you are grateful for. So I am truly grateful for the experience, for the time over the past 10 years to care for Tom, to help him get well, to help both Sam and I to learn to live a different life, to know about humanity, caring and accepting with gratitude the people in the world that want to help you. The caregivers, family, friends, and even strangers that often lend a hand. I am grateful that Tom survived and I hope that even as difficult as life is for him that in some way we have made it better. And we will be grateful for the time we have with him. And that through all this, it has made us better human beings, to slow down, to understand a disability, and be grateful and to most of all, know that life is still worth living no matter how difficult it might be.
In closing, the following is also from the book Out of Africa, and how challenges help us appreciate life and put things into perspective. “Difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.”
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