Our broken souls fight what's naked to the eye. We're warriors wrestling with invisible battles. Our adversities strengthen us after winning arduous rounds of sparring with despair and uncertainty.
We combat illness every day with as much grace and dignity as possible.
We dream of living somewhere over the rainbow, to walk in Dorothy's shoes where black and white turns into color, and the world looks full of promise.
We long for a normal life.
Last week these thoughts filled my heart. Waiting to write about them here felt impossible so I created a short post on Facebook.
The response I received was overwhelming The outpouring of love and compassion made me feel less alone. Thanks to everyone who responded. You made a difference.
I wanted it to be a teachable moment. I hope it was.
Breaking yourself open to tell your truth isn't easy. You wonder if honesty will be a sign of weakness to your readers. But I believe surrendering to adversity and sharing it with others shows great strength and courage.
As the often quoted (by me) Elizabeth Lesser eloquently wrote in her book "Broken Open":
“Adversity is a natural part of being human. It is the height of arrogance to prescribe a moral code or health regime or spiritual practice as an amulet to keep things from falling apart. Things do fall apart. It is in their nature to do so. When we try to protect ourselves from the inevitability of change, we are not listening to the soul. We are listening to our fear of life and death, our lack of faith, our smaller ego's will to prevail.
To listen to your soul is to stop fighting with life--to stop fighting when things fall apart; when they don't go our way, when we get sick, when we are betrayed or mistreated or misunderstood.
To listen to the soul is to slow down, to feel deeply, to see ourselves clearly, to surrender to discomfort and uncertainty and to wait.” ~Elizabeth Lesser
But resting for weeks on end can leave you feeling lonely and isolated. You watch the world go by without the ability to join in.That can break your spirit into tiny pieces.
When that happens to me I have time to think. About aging and MS and what that will mean for me. About the future of healthcare in our country. About finances. About Medicare covering my revolving door of doctors. About whether I'll travel again and enjoy life as I once knew it.
And sometimes I wonder if the people I care about will go the distance with me through the worst, and best, of times.
When you lose pieces of yourself to illness these thoughts cross your mind.
If you want to know how we feel walk in our shoes a little. We don't want to be sick. We don't want to complain. We don't want to be different. We just are.
Here are four suggestions on making a difference in the life of a chronically ill person. Kindness and compassion are never out of fashion:
NOTE: This post is based on my experience of living with relapsing-remitting Multiple Sclerosis. There are four types of MS and mine is reported as the most common, least progressive type.
There are millions of people living with invisible illness, from Graves Disease, cancer, arthritis, chronic fatigue syndrome, fibromyalgia and many others that include symptoms like debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences and mental health disorders.
I don't have the corner on illness. Not even close.
I don't have all the answers. So I write what I know. I hope you let me know what you know.
Thank you for listening.
Thank you for sharing your experiences and teaching us how to help. It's a valuable lesson on both ends. Sending you healing thoughts.
You and your words are so beautiful. I am forwarding this latest message to my daughter in law who has many serious health issues and I know will benefit from your thoughts.
That rumble you feel is me doing "the wave" all the way across the country!
I love the "be consistent" advice. That is something that a lot of people just don't understand I would imagine. Kind of like with a death---people forget that the loss is still there months after the funeral. Thanks for a wonderful post that deserves to be shared time and time again. Great wisdom here, Cathy!
Beautifully written from your sweet soul, Cathy. As I've written about, my granddaughter's seizure disorder affects her life in many of these ways. Sometimes a sigh or rolling of eyes in frustration or disappointment when she must bail at the last minute is a hurtful, powerful blow to the soul...even when loved ones understand!. The more you share about invisible health problems, the more you inform and guide the rest of us. I too am sharing this with her as she navigates into adulthood and independence. Bless you and please feel my hugs and shoulders to lean on. .
Bravo dear friend! Life seems to stand still for us so much of the time, it is lovely when someone stops to stand with us even if for only a moment. Sending loving, healing thoughts to you!
I wish your body was as strong as your spirit. Thanks for this wise advice.
So wonderful as always, Cathy. I just forwarded your blog to my brother who's wife Jennifer has MS. I know she'd benefit not only from your words of wisdom but a sense of community. Thanks for being so honest. By doing that, you're helping others find their truth.
Hi Cathy,
"I want you to feel better." That's a well intentioned statement, but poses a direct challenge to one who knows that better is not ahead, and certainly not just around the corner.
"Are you having a good time?" In the midst of a family gathering with too many voices, perhaps too many unknown significant others for now, or just too much movement to allow comfort, it is hard and often impossible to verbally answer that question with any semblance of truth.
"You are doing too much, and you ought to stay home and rest more." or,
"You are dong too much, and you're doing that to avoid family times."
We do make choices. There are things we can do. You are a writer and spend time posting and sharing thoughts and resources with us. Sometimes family times are more exhausting both mentally and physically than just doing what we are able to do on our own, like write, or quilt, or run our own small business.
The holidays are a time of family demands ... our traditional presence is not only expected but often requested directly.
What others can do for those with invisible symptoms is practice compassion and patience and understanding and forgiveness when we can't live up to their requests.Chronic illness is what my mother in law would have called 'a slippery slope.' Aging is the same. As I enter the third stage of my sixties, now heading toward my seventies, I am beginning to realize that explanations repeated are words wasted. I don't explain anymore. I don't fulfill others' expectations. Instead I do what I can to make others' happy ... the others' who ask nothing of me ... often the others' who don't even know who I am and never will, but who I know will be happier for my efforts, unseen. That brings me peace. I'm sure you know what will bring you peace, too. Do it. Never mind that it is not an established tradition for you ... if you can do what someone unseen or unknown needs done, it is worth doing, worth your energy, worth you.
I'm so glad you wrote this, Cathy. Sometimes it is hard to know the right thing to do. Your suggestions are good ones and easily done. Wishing you well on your road to recovery, my friend. xoxo
Cathy: My mom has a chronic disease (Epstein-Barr), and I keep forgetting the phrase, "How are you?" can be really complicated. What works best is for me to just listen and to refrain from giving any advice. And it helps for me to believe her experience instead of saying things like, "You don't look sick." or "Your illness seems to come and go. Is it psycho-somatic." I feel bad for her. I also try not to define her by her illness but by her accomplishments, talents, personality and passions. It really stinks that she has to work around her illness. All my best to people living chronic illness. Hugs for the hard things and high fives for the victories, big and small.
Hope you are feeling better. A few of my yoga students have MS and I feel like a know more about it because of your blog and all that you share. Wish you lived closer so I could do restorative yoga with you. Sending healing vibrations your way.
The hardest of the four is consistency.
Well, I will once again try to submit my comment. I hope it is received! With tears running down my face, I read your post. Not out of sadness, but out of comfort. Just knowing, you are not alone with being a part of the chronic illness club. How can those fortunate enough live without such an affliction be expected to understand? Not void of compassion, just experience. Life has a way of just getting in the way of time. I look forward to reading your posts and your insights. I am an avid fan! I need to become computer savvy so I can share your words!
It's amazing to me that people will say "call me if you need anything" instead of just reaching out. Which is more likely to be effective.
Sending you lots of love and wishing I could just stop by and pay you a visit. xoxo
Cat, find your Joy. I know it's in there! I love you, Tres