My mother gave me my baby book which I have started to go through. I found a photo in it that I have never seen of the person who was my favorite when I was a kid: my maternal grandmother. In this image I am 20 months old. I also read in the book that for my first week of life Grandma and her other daughter, my sweet Aunt Alice, stayed with my parents and helped take care of me. She was the best grandmother anyone could ever have. The grandmother poems in Rooted and Winged are about her.
For months now I have been writing this post in my mind. The reason is that the post is meant to help clarify my thinking about a matter.
I grew up in an era where people still believed that it was important to “pull yourself up by your bootstraps” and to “put a good face on.” I also like to be seen as strong or even tough. Most importantly, there are always people worse off than ourselves. Some people have such horrible “roads to hoe” in life. It makes me cry to think of what some people go through.
Further down there is going to be a “but.”
Without boring you with too many details, underneath a lifetime of many and varied illnesses, I have a few chronic conditions that are a bit extraordinary. One of these is primary congenital lymphedema, particularly in the lower extremities. It’s what used to be known as elephantiasis.
Additionally, I have a migraine disorder that for the last 25 years has not (for the most part) been headaches, but a sudden and extreme set of symptoms. Because the symptoms didn’t fit neatly into a specific type of migraine, I was told they were “complicated migraines.” Most recently, the diagnosis is that I have genes for more than one rare type of migraine—and that they work together to give me symptoms of more than one disorder. Most likely these are vestibular and hemiplegic.
An extra issue in the mix, and I’ve written about this before, doctors at Mayo Clinic discovered that I had a very rare tumor in my right foot (rare meaning at that time medical staff couldn’t find any medical literature of a tumor in that particular bone). This was a nightmare that went on for 1 1/2 years and was complicated by my lymphedema. There were only two surgeons in the United States that Mayo considered competent to do surgery on this tumor, and it was performed by the AMAZING Dr. Eckhart at UCLA orthopedic hospital (RIP to a wonderful person and doctor). Five years after the surgery, he told me he never thought the surgery would work but he watched over me so carefully. Since the surgery I am not allowed to run, jump, hike, or do most aerobic activities.
I write about these details to give a little context. Back to putting a good face on and all that. Because I am a writer and keep up with current events in the writing world, I am more aware of new ways of thinking about things than I might be if I weren’t writing and especially reading new work. My view of myself that I have had my whole life has been as a blessed person–certainly privileged in many ways–and that I needed to stay tough and “power through” everything and then set it aside. Another way of putting it is to say burying it down deep. Perhaps what best fits is that I never made space for my health issues. I let everything else in my life intrude and take over the space they needed.
But (I told you there would be a but!) reading young writers, I am beginning to change my view of myself. I am disabled. Any time I go out I must have a hat and sunglasses with me for lighting situations (migraine trigger). I can’t go to concerts or sports games because of flashing lights. I can’t travel alone because it’s become too dangerous with the migraines which occur in a moment and are completely incapacitating. I must bring my lymphedema pump with me to travel–as well as lots of other things for the condition, and it takes a lot of time and energy every day. Most importantly, lymphedema affects much of the rest of my health, and as I age (arthritis and other deteriorations, for instance) it will become more and more of a problem.
So, while I have no ridiculous illusions that my situation is comparable to the tragic illnesses of so many others, I am finally realizing that disability has nothing to do with comparison between one person and another. And it isn’t negative or counter-productive for me to finally understand that it’s ok to admit that I am disabled, that it’s just a useful way to communicate with others. If people don’t realize that I am disabled, how can they be supportive?
I wish I had had this epiphany years ago when my son was still young. He has an exceedingly rare disorder that doctors misdiagnosed for decades. It’s so rare that in the NORD (National Organization for Rare Disorders) list it is lumped in with other disorders and diseases instead of being listed separately. At the most, only a couple thousand people in the U.S. have his disorder. The reason it’s important to note the rareness is because the less others know about your disability, the less helpful they are–even if they want to be!
You see where I am going with this? If I had been better about making space for my disabilities, it might have been easier for my son with his own situation. It’s hard enough when people see you from the outside and say, “Oh, it’s not such a big deal,” with absolutely NO understanding of what it’s like to live that life. So, while the gardener and I always respected the importance of his disorder (which I first noticed when he was nine months old, and the pediatrician practically laughed at me), we didn’t teach him to make space.
Now I see everything differently.
Have you ever had a big shift in how you viewed yourself?
OK, ending on something a little lighter. Perry is very unhappy about the cane I’ve been using since I injured my knee more fully when I got home from Michigan. Yesterday, I was walking in the living room, and Perry came up from behind and crashed into the cane, forcing me down on the bad knee. Yes, it hurt like heck, but it was funny, too, because what cat does something like that? A dog might do that if he’s frustrated enough. But Perry was just being Perry! And then we had the hugging session afterwards where he apologized to me! Sweetest, funniest little goober.