Roger Barbee: A letter to a young relative
Note to the reader: The following article is adapted from a letter I wrote to a relative. Judy and Jack are pseudonyms, but everything else is true.
There is no way I fully understand what you and Jack are facing. Being a young mother, wife, and woman is something of which I know little, and now your pending double mastectomy compounds the little I understand. However, I know something about losing body parts and hope what I write will, when you are ready to read it, help you in the journey you face.
My accident came when I was older than you are now, and it was sudden. Both of those facts make my experience, in some ways, easier to bear than yours. You have had to hear and evaluate complex medical information to make a life-choice decision. That is much more difficult, I think, than just having something happen that removed the use of my lower extremities. But, I don’t want to write only of the event you are facing, nor those deep, dark moments that you have faced and will face. They will arrive lasting for a thought, a glimpse of your body, a morning, or longer. While these times will test you and Jack, I believe that you will get through them because of who you are individually, who you are as a couple, and who you are as a family. What I most want to share is the light of the morning after that darkness.
While I was in rehab, many well-meaning health care providers helped me. They worked as a team of six to teach me how to live from a wheelchair. They gave me all the gathered wisdom they had. They encouraged me, and told me that I would be fine. They meant well but knew little. (How could they really know, not living from a wheelchair?) Discharged, I left to learn a new way of living. I wish I could tell you that it happened quickly and smoothly, but that would be a lie. Yet, I clung to a few life rafts: an experience I had in rehab, my family, and my friends.
In rehab I was given a small stuffed bear that had a halo. I named him Merton and slept with him every night. One night, curled around Merton, I was awakened by a strong, bright light right in my face. Opening my eyes, I was struck by the bright warmth on Merton and my face. A sweet, strong voice said, “Don’t be afraid, you will be all right.” Merton and I went back to sleep. Judy, it was not a dream, but as Reynolds Price (who lived many years in a wheelchair) said, “a visitation.” So many times since I have drawn upon that experience for strength. Your mother-in-law, as well as many other family members and friends, have been a rock of support. Learn to lean on such people for help and strength.
Learning to live my new life was hard, and even 13 years later, new challenges rise. Some things, like driving a car, proved rather easy, but learning to get in and out of the driver’s seat was a chore. I remember all the days early on when I was forced to deal with being incontinent. Once, while teaching class, I realized that I had wet my seat and pants. Those accidents seemed to always come at the most inconvenient times; however, over time my body adapted, and we have reached an understanding of sorts. It speaks; I listen. So many daily rituals, such as getting dressed or taking a bath, had to be re-learned, but I re-learned them. Even the joy of sex was re-learned.
Judy, I could go on with the trials I faced, but more importantly I want you to know that you will learn to deal with the mental, emotional, and physical trials awaiting you. You will learn how to manage hot water in the shower because of your having chest nerves surgically removed; you will learn how to dress the new you; you will learn how to look at yourself in the mirror; and over time, you will learn how to physically love your husband. You will, to use words told to me years ago by a man in a wheelchair, “find your way.”
Judy, what you face will require much of everything, but please know that you can do it. You have suffered a loss that deserves to be mourned, but also persist in grasping the opportunities of your new life. You can’t go back to what once was, but you can go forward. Expect the bad times and embrace them for what they will teach you. Then, after a while, in the brightness of a future morning, you will emerge a new woman.
Roger Barbee is a retired educator who lives in Edinburg with his wife Mary Ann, four dogs and five cats. Email him at email@example.com.