Life is decidedly different in our house these days. For 6 years we have lived under the diagnosis of Parkinsonism, specifically Multiple Systems Atrophy. We live this changing life one day at a time, though occasionally we get a rude awakening, like we did this morning. As the movement portion of Russ' brain atrophies, tasks become more difficult and eventually they will be impossible without help. I spend my weeks caring for him and loving him, occasionally rolling my eyes at what I consider an ill-timed request. At times I feel frustrated at his stubborn insistence that something has to be done NOW or bought NOW. But then I imagine how he must feel, vulnerable and irritated by his own limitations. Of course we both wish it weren't so, yet I wouldn’t trade one minute. I need and want to be with him. I need to be a part of his care team.
Even six years ago, life was far simpler. Russ was walking. He needed very few adaptations to his basic needs. He was independent to create his day on his own terms. His days now include me, caring Christina (CNS, Critical Nurse Staffing) and some time on his own. He no longer drives, no longer prepares his own food and often needs assistance showering and dressing. I am extremely grateful he does not have to navigate this new world on his own!
How does 41 years together fit into the groove of illness? What does it really mean to be a part of a partnership and marriage? To extend that thought, what does it mean to care so much for someone that you are willing to do what it takes to be the patient or to be the caregiver.
41 years ago we were brave enough to embark on this journey. Marriage is not storybook perfection, but ridiculously fraught with imperfections. We each gave over a piece of our heart to the other and in turn accepted a piece of the other person’s heart — by choice!
It is not easy. As Pastor Jeff says, there are mornings you wake up and have to make a choice, the choice to stay married. The saying 'fake it til you make it' really does apply to marriage, though it would perhaps be embarrassing to say that to your child. But honestly, marriage is imperfection.
It is also acceptance, vulnerability and forgiveness. It is waking each day choosing the other. It is a partnership of shared dreams and experiences. There are disappointments, struggles and tears and I do admit we have had more of those in the last couple of years than 35 before combined. There is love and joy and work and family. Russ and I have been on this journey for 41 years, it has been a delightful gift.
For our first 20 years+ of marriage our photos are all on slides or negatives. I have only begun going through those to see what I would like to print. My actual photos begin around 2010. Like many households there is the designated photographer who rarely shows up in photos. That's me, so the fewest shots are of the two of us together.
Happy Anniversary to us! So far, so great.