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.
It’s hard to believe all that you endure, and yet you still describe(d) yourself as privileged. Yes, in some ways I suppose you are—you aren’t poor, you have a family you love, you have ways of expressing your creativity, etc. But you are right—comparing ourselves to those who have it worse doesn’t really address how miserable our own situation can make us. Hiding our feelings (and feeling not entitled to them) can only backfire.
I read this and felt blessed with how fortunate I am. Sure, I have some medical stuff, but who doesn’t? But none of mine render me disabled or affect my day-to-day life. You have reminded me how grateful I should be for all of that.
Was Perry telling you he’d missed you?
Amy, you are such a kind person. Thank you so much. Perry, haha. He definitely did when I got home. He and Lily were all over me. Actually they were all happy I was home, especially the gardener ;). The cats didn’t eat much while I wasn’t here, and all we can conclude is that because the gardener was still at home they thought I was gone for good.
Oh my! I have a few health issues that are problematic but you can’t see them. I’ve had to adapt my life around them (and it’s a good life!). Travel of any distance is not going to happen but I’ve made my peace with it. I find as I get older, my friends are more willing to accept my “can’t do’s” without argument. Several years ago I realized that docs (and vets too) are just people. They don’t have all the answers. They miss things. It’s best to be your own advocate and stay on top of your issues as best you can. Wishing you the best. PS: I have a friend with lymphedema. During a particularly bad episode a few years back, I had to wrap her leg every other day for weeks. Once hidden under pants, no one knew. That’s the good news and the bad news. No one sees it so no one supports you.
Kate, you are so right about dealing with the medical field :/. I agree about the can’t dos. As people begin to have their own medical issues from aging they are more understanding in many cases. Thanks for sharing about your friend with lymphedema. Funny you should mention that about hidden under pants. It makes me think of 2 things. One is that your friend and I are “lucky” because so many have such out of control horrific lymphedema that they are completely bedridden. The other is that yes, hidden under pants, but that act of hiding over decades is not good for the person doing the hiding. There is a cultural aspect, though, and it makes me glad to live in the U.S. When I was younger and the lymphedema was a bit more under control, in hot weather I would sometimes wear shorts or skirts with my compression stockings. Adult (and mature-minded) Americans tend to ignore something like that. But I was in for a rude awakening when I went to Italy in the summer and wore skirts with my stockings. People stared openly with unpleasant looks on their faces. I still thought Italy was such a beautiful country and loved my visit, but that was a real downside.
My ex-mother-in-law used to wear what appeared to be pantyhose under skirts at the beach. I always thought that was odd and hot but never asked about it. Now I wonder…
Exactly! And brought up not to talk about it, I’ll bet! A few years ago we went boating and I found a long legged bathing suit on Amazon! I could wear my stockings and still have a cute bathing suit top.
Thank you for letting us into this part of your life, Luanne. It was a brave thing to do.
Thanks, Liz. It took me the longest time to write this post. I’ve been thinking about it forever.
You’re welcome, Luanne.
<3
Thanks, Ken!
The photograph was a great find, not the least because that Grandma must have contributed a great deal to your positive attitude to life despite your disabilities
Derrick, that is such a nice thing to say! Grandma was everything. I interviewed my mom this past visit to see her about her life–not much but just a little–and I asked her what was her favorite thing about her mom (this was a pre-formulated question by Storyworth). She said her kindness!!! That is how I see my grandmother as well. And fun. She was always fun.
A lovely photo Luanne. I think I come from a similar background, where everyone had their place and shouldn’t suggest they were above it and appearances were all importance because ‘what would people think’. It sounds as though you’ve really been given a challenging set of medical issues – and not just you, but your son, (and I think your husband too with gluten issues?). I think you certainly have a right to feel unabashed about sharing them. It will just mean that I think your achievements are even more marvellous!
You know it, Andrea! Very similar. I can’t believe you remember that about the gardener’s celiac. Yes, that’s true. I have been very careful not to step on my son’s toes by talking much about his disorder, but it’s time for us all to be more forthcoming. And, aw, that is such a sweet thing to say at the end of your comment. XO
I think it is a very good thing that you shared this with us. For one thing, we can pray for you and God listens to each and every prayer. God has given you so many gifts and you use them beautifully. But, you have been silent about your journey…a journey that has not been easy. The older I get, the more I see that people choose to suffer silently. They do not want to ‘burden’ others and they do not want to ask for help. And yet, it is good to seek help along the way, sharing our ‘burdens’, as we all have some. In life, we must carry our rain buckets with the help of God. Our friends and family want to help…they do not mind to get a little rain-splattered!!! They want to be there for you…rain or shine. 🙂
Linda, thank you, that is such a kind offer! You are so sweet. I would love to have friends praying for me and my family! XO
I am praying for you! 🙂
Linda, I am so grateful.
That Perry is a mess – he definitely has identity issues – the cane incident is 100% something The Red Man would have done. But not funny when you’re knocked down!
It is very hard to focus on our own health when we think other issues are more important. But when we don’t have our health, the other issues become less important. I’m sure you know that.
Managing symptoms assumes new importance when combined with the knowledge our bodies seem to let us down more as we age. Sigh. So take good care of yourself.
I am thrilled your mother gave you the baby book, and I absolutely love the picture of you with your grandmother who was a knockout. You were pretty cute yourself!!
Thank you for sharing your personal struggles with your health. You’ve done your part in redefining disability. That’s an important contribution to a universal conversation.
Thanks, Sheila. Wow, you brought back my memories of voice of The Red Man! I’m sure you still think of him often as he was so special (kind of like Perry). I agree about other issues not being as important without health. Without health, there is very little to life and such a dependence on others.
Thank you about my grandmother, too. She would have loved hearing that haha! She was brought up that her sister Vena was “the pretty one,” when my grandmother’s beauty shone so vividly from inside and out.
Perry is right here, by the way, and still looking a little glum about this cane. My physical therapist thought maybe he thinks it’s a stick and has bad memories from his stray days. Maybe?
During my “cane” and “walker” years, I did find my dogs gave me a wide berth! I think for rescue fur babies it’s maybe worse than we could ever know. That Perry is the best. Every day a blessing.
He is such a good kitty, although naughty ;). I am having fun with my granddog over here, by the way. They are living with us, so I get to “babysit” and he loves his grandma (I give him little dog taco treats and that makes him love me even more haha).
It’s been so many years since I was in the wheelchair, walker, and then finally cane that none of my animals from that time are around any more. These guys are surprised by it, although last night I saw Perry cuddling up next to the cane . . . .
That’s hilarious about Perry and the cane
It was pretty funny. I told him he was fickle.
How brave and candid of you, Luanne, to reveal your “heavy sack to carry” (as phrased by Seneca). You are triumphing over great obstacles, and I admire you for it. And …your productivity is an inspiration! Thank you for today’s post.
Thank you, Elaine! Those are very kind words! I hope all is well with you.
I’ve begun to admit being largely homebound. Part of it is probably denial, that things will eventually get better or at least not curtail things. Friday’s out-of-town and delightful book talk is probably my last, especially since my favorite chauffeur (four years into Parkinson’s) was nearly as exhausted as I was. I’ve turned down three more and canceled one. I too am blessed, feeling crummy in such a lovely place with my favorite chauffeur (and grocery-getter). I love it that you’re creative right in the middle of your challenges, and that you’ve shared both with us.
Is it your fibromyalgia, Joy? That must be an exhausting illness. Exhaustion can take so much joy (sorry, it’s not meant to be a pun) out of life. I’ve been turning down fun writer events in the evenings for years now, and I know nobody understands. They just eventually give up and go away.
It’s a fine line how much we reveal to others about our limitations, isn’t it? You don’t want the conversation or the relationship to be all about you, but as you say, people need to know in order to be supportive. My challenges are nothing compared to yours, but I do have hearing and vestibular issues following surgery for an acoustic neuroma (blessedly benign) that left me deaf in one ear some years ago. For me it has been less a light-bulb moment than a journey — I’ve learned when and how much to share, and set strict boundaries on how much I am able or willing to do. The upside is that along the way I have learned and accepted so much about myself. I hope your son is able to face his condition with as much courage and generosity as you have!
I am so sorry about your hearing and vestibular issues. I hope you don’t feel sick from dizziness too often. Yes, it is so hard to know who to tell what. My husband likes to overshare about my issues, which can be uncomfortable for me only because I don’t think anybody really is interested and that he’s boring them. Thank you about my son. His condition is so difficult because of the cluster of symptoms that come with the disorder are not ones that other people have any understanding of. I wish I could let people know more but don’t want to step on his toes. Thank you so much!
That photograph is wonderful. Your grandmother’s kindness shines through.
I knew you had some of these disabilities, but not the extent, and I didn’t know about your son. It’s difficult to know sometimes what and how much to reveal. You have achieved so much, and yes, in some ways you are privileged, but you are also disabled. We’re all a mess of contradictions, aren’t we? 🙂
Love the Perry story!💙
I can hardly imagine going through all the chronic conditions you deal with, so it’s impressive how you do, and call yourself blessed, too. While it may seem that your background encouraged you to “stuff it,” it also taught you an incredible resilience to life’s challenges.
It seems to me that despite those challenges you have learned to tap into all your creative and empathetic talents, which really is a blessing.
Oh, boy. Well, first, how cool that you have your own baby book! What a precious gift.
Second, thank you for being so open about coming to grips with your disabilities and how keeping them under wraps (no pun intended) might have hindered coping with your son’s condition. I also grew up in a society that expected people to keep quiet about any difficulties they had, whether physical or psychological. Openness was discouraged.
Yet, when a person is open about whatever it is that they are struggling with, they have a better chance of meeting someone suffering from the same malady or disability and then LEARNING more about how they might be able to help themselves or another. Sometimes we learn more from each other than we do from doctors.
Am I making sense?
They also learn that they are not alone which can be a psychological boost.
Big hugs to you!! Reading about all your ailments made me weep, but I admire your honesty and your tenacity. Sure, you have to do things differently (like not traveling alone) but you still do things. From where I sit (and I know that’s quite a distance from you), you haven’t let any of these disabilities stop you from living and loving your life.
That Perry is quite a character!
I appreciate your forthrightness and honesty and attitude – all of it, Luanne. It’s hard to use the word “disabled” because it comes with so many implications. Don’t be hard on yourself for not using that word for your son for a long time. When my son was 10 we discovered he had a rare tumor (again, so rare we’d have to join a support group of ‘rare tumor disorders.’) He was quite an athlete and an amazing soccer player (even just at 10) but started limping a lot. After a 6-hour MRI we found out he had a (inoperable) venous malformation that starts at the ball of his foot and extends to his knee. Painful, to say the least, and he was told he could never do sports or any exercise on his feet. Soccer was done. He gained a lot of weight. But at 18 he discovered bicycling and weightlifting. He lost the weight and is so strong now, biking up and down the hills of the SF Bay Area for hours. I guess it’s how we handle our disability that shapes us (and no, I never thought of my son as having a disability, but of course he does!). Walking for more than a few minutes becomes painful. But he learned to walk without a limp.) Okay, sorry, that’s it. Except I have a weird seizure disorder that sometimes becomes a migraine. Hey, we writers have it all, huh? 🙂 xo
Hi, I saved this blog because I know I wanted to really read it, not just skim. I think sharing your disabilities is important — I had no idea, but then we just visit on the screen.
I also think you make an excellent point about the habit so many people have (including me) of “putting on a good face” and stuffing down our discomforts, pains, or illnesses. It IS important to make space for them in our lives.
I never wanted to let them take up too much space in my life, but as I age (and my issues are mostly age-related, not chronic illness) my body is insisting I acknowledge them. Now my approach is a mix of acknowledging (I don’t feel great today because of X), trying to accept, and doing what is possible within the parameters of that day.
Thanks for your honesty and wisdom!
I agree that with aging come new challenges, and that there comes a “breaking” point where you have to give in and acknowledge them, often times humorously, and just go with it. But it’s important for everyone to do it with whatever issues we have because if we don’t make space we aren’t taking care of ourselves. Which is a big mistake. Thank you so much for reading and responding to this post, Ellen. I really appreciate it.
Thank you for writing this post, Luanne. How we perceive ourselves is important. I’m from the same generation, and I’ll add “No one likes a whiner” to “Pull yourself up by your bootstraps” and “Put on a good face.” In many ways, I carry these same words. Hubby has lymphedema, plus arthritis, so going anywhere longer than a day is out of the question. How on earth do you travel with your machine? My best to you, and thank you for keeping a positive perspective.
Yes, no one likes a whiner! That’s another one! I’m so sorry about your husband’s issues. Is it primary lymphedema or from surgery! My pump is 16 years old so it’s heavy but doable. But I am getting a new one (I hope) next month or so. So excited because it will have three speeds and a deflate buttons. And two legs at once !
His is primary. I didn’t know lymphedema could result from surgery. His pump has a deflate button but no speeds. Hooray for your new pump!
Women who have mastectomies sometimes get it in an arm, but any surgery that removes lymph nodes can cause it. So important that a pump is deflatable. With the problem I have been having with my knee I had my old pump on and the knee started to hurt really bad and I couldn’t get it off!
Thanks for the info! Hubby’s knees are aggravated by the pump, so he zips it up to just below the knee. It works.
Oh wow, that’s great. I mean the zipping part. My old pump does not have a zipper. I hope the new one does!
I hope so, too!