My mother was diagnosed with Multiple Sclerosis (M.S.) at the age of 21, long before I came into being. For a time, mom was healthy. She could walk and work and dance. Oh my, how she ever loved to dance. To this day, when I dream of her, I dream of her dancing.
Her MS was progressive, with periods of remission. This means that she would have a “flare up” or get sick. Her balance, eyesight, walking, and often bodily functions would be impaired for a few days, sometimes a couple of weeks. She would need a great deal of care, and would be on bed rest. Half her body would become numb, which would also impact her ability to do what she could, as she couldn’t feel herself taking steps, or feel her need to use the restroom.
Soon enough, she’d start to get better. When I was very young, her “flare ups” were rare, short, and her recovery seemed complete. As time went on, her flare ups were more frequent, lasted longer, and she wouldn’t recover as fully. A time came when she could only dance the slow dances. Then the time came when she couldn’t dance at all.
When I turned 12, she was able to retire early from her job and keep her civil service pension because she qualified for disability. Her income then became just over $600/month and she became a stay at home mom.
As far as MS goes, mom is statistically quite fortunate. First, she’s 70 years old, has had MS for nearly 50 years, and is alive. She can feed herself (if it’s cut up for her) and can use a wheelchair. She can read large print books, and LOVES television. She mostly remembers who people are, and while she may sometimes think I’m her sister, she never forgets who her grandchildren are.
It can be difficult to both count my blessings with mom and acknowledge how hard it can be. Now, her “flare ups” are urinary tract infections and high fevers and we forever wonder which one will be the last one. Her organs are slowing, her speech is more slurred and she’s made the difficult decision to not have her life extended through medical intervention. With each scare, I grieve the loss of my mom a bit more. Last week, we received “the call,” and activated the phone tree to get family there from far and wide. She made a miraculous recovery from a couple-day prognosis and today was wheeling herself around the nursing home.
We all know that caring for aging or sick parents can be an act of love. It’s also okay to acknowledge it can be hard, physically for some, emotionally for most, and unpredictable. It can bring out the best and worst in us, sometimes in the same day, and can bring out the best and worst in families and social circles.
It seems this time I’m recovering a bit more slowly than my mother is, as she wheels herself around boasting her close encounter. I am reminding myself of what I hope you do if you ever find yourself in like shoes. It’s okay to feel weak or spent. It’s okay to ask for and receive help. It’s okay to feel angry and sad and scared and indignant and disappointed. It is even okay, in the toughest of moments, to imagine the relief that may come when the roller coaster ride comes to an end. Mixed feelings don’t negate our love, they can coexist in the same space, at the same time.
It’s also okay to feel a bit robbed by what you didn’t have, while also celebrating and being grateful for all you do. In my case, I have some people who keep me sane in the midst of all that feels crazy, and I appreciate each of them. As my wife, who is often much wiser than me, reminds me “Pull out a little compassion for yourself, even in the middle of the other stuff.”