In June, I will turn 66 and still have so much to learn. My latest lesson? I must learn the art of letting go! This is hard. And for a person with ALS, letting go means so many different things.
|Joan Sucher and her husband
For most of my life, I believed if I took care of my body, my body would take care of me. I believed I would live to a ripe old age. My dad lived to 101, my mom, 92 — longevity was on my side! ALS struck me like a ton of bricks at 63 years and 7 months. There is nothing I could have done nor can do now. ALS will never leave me, never go into remission. I need to let go!
I think to myself I have accepted ALS and the destructive effects on my body. But, in reality, I try to live my life every day like it is not there. I continue to exercise (no longer running, but walking now and yoga, which is becoming increasingly challenging for me). I continue to try to eat healthy, run errands, meet with friends, share time with our grandchildren, steal time away with my husband. I try to look past the total loss of speech, eating etiquette, swallowing difficulties, the stiffness/spasticity in my right leg, the daily cramps in my arm, hand, leg, and yes, even my head and neck. I try to ignore all this to the point of not looking into the future, what ALS is doing to me, what it will do. I need to let go and see it, believe it. I need to prepare for and deal with the ramifications of this destructive disease.
In a world where we see daily so much sadness, hate, destruction and evil, I am seeing a world of real goodness and, though it is so hard for me to accept, a chunk of that goodness is coming my way. I need to let go and accept it!
I see this goodness every day from my husband with his endless patience and love as we struggle to communicate, which used to be so easy.
I see goodness from my kids, who powerlessly watch me failing and want so much to help me prepare for my losses.
I see goodness in my family and friends who truly want to walk this walk by supporting me with their time, their love and their participation in a recurring fundraising program established by our children.
I need to let go! But, this is all very hard for me. I came from loving parents who, without consciously thinking about it, raised me to be responsible for myself, to always prepare for the worst, and if the worse happens, then be ready to take care of it. I am used to being self-sufficient, taking care of myself and making my own decisions.
Now, life has changed for me. I am being taken care of, and there are decisions which need to be made which I struggle with. I am reticent about those decisions, and so they are being made for me. I am reticent because those decisions involve the goodness of others. I need to let it go and accept. I need to remember these changes will help not only me, but those who will be caring for me when I no longer can. I need to remember these decisions are therapeutic for all who are walking this journey with me — this is their way, maybe their only way, of making my remaining lifetime livable with this unthinkable disease. And why? Because that is what good people do.
And so, at almost age 66, I am still learning. And perhaps this lesson is the hardest and greatest of all — letting go!
To learn more about Joan Sucher and her journey with ALS, read her story that is currently running as part of MDA's ALS Awareness Month campaign.