Coping with loss, big and small, in the wake of a LEMS diagnosis
Grieving the past is an important part of adjusting to life with LEMS
It had been a good day. My daughter Grace and I accomplished things I never thought she’d be able to do again. Her diagnosis of Lambert-Easton myasthenic syndrome (LEMS) several years earlier had upended our world and everything she had known. But with the right treatments, Grace had made huge strides. She was doing more than she’d done in years.
On that day, we strolled through the mall and went out to dinner. Grace even had enough energy to take a short walk on the beach.
As we were driving home, Grace offhandedly said how much she missed playing sports. Before her diagnosis, she loved being part of a team. She had dabbled in basketball, volleyball, and softball. Of course, with the onset of LEMS, simply walking took all of Grace’s energy. Sports were out of the question.
She made the comment quickly and the conversation moved on to lighter things. But shortly after, I circled back and affirmed Grace in her feelings of loss. I knew she needed to process the grief about what LEMS took from her life.
Reflecting on other losses
I was reminded of this conversation recently on a day when I’d reached the brink of exhaustion. I’d been running around all day, being all things to all people, as most moms do. All I could think about was coming home, getting into a warm tub, and stealing away for a few minutes to read a book.
As I prepped my bath, I reflected on all the years of running baths for my kids. Grace especially loved a good soak in the tub. She, like me, loved the water hot, and she’d play with her My Little Pony figurines until her skin shriveled and the water turned cold.
Of course, we know now that a hot bath is not recommended for someone with LEMS, as it can exacerbate muscle weakness. For that reason, Grace has not taken a bath since the onset of her LEMS more than five years ago.
Most might say having to give up baths isn’t a big deal, and usually that would be true. But in this case, it indicates a larger loss for someone with LEMS. They’ve given up many of the “small” things in life, but most patients have also experienced significant losses. Some have been forced to give up careers, athletics, hobbies, travel, and educational pursuits, all because of LEMS.
Big or small, a loss is still a loss. We grieve it, miss it, and oftentimes need to find something to fill the void it leaves.
Grief shouldn’t be ignored while adjusting to life with a rare disease. Yes, good things still await us, but to ignore what we’ve lost would be a grave injustice. It’s important to acknowledge all the ways that LEMS affects us.
What do you miss doing since your LEMS diagnosis? Please share in the comments below.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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Comments
Sandra Günther
Thanks Lori, you express these little losses so well! I would love to have the feeling of a long run in the woods just one more time;)
Lori Dunham
Yes, Sandra! My daughter misses running so much.
Alan Stone
Just playing baseball catch with my grandsons the way I did when their mother was growing up. Teaching them boating, sailing, SCUBA, saltwater fishing, team softball like I did with their mom and their aunt. I bought a golf trainer, car bike rack, ping pong table and volleyball set and never unpacked them. Miss that but still doing OK.
Lori Dunham
Alan, thank you for sharing. Those are moments hard to miss for sure. So glad you are doing well though.
Susan Henderson
My husband had experienced muscle weakness in his legs which was viewed by our PCP as something to be treated by a heart doctor. Three years ago he became ill with pneumonia and was placed on a ventilator, and when removed from the ventilator a month later, no longer had use of his hands or arms. He was looking forward to retirement, was midway through building a shop behind our house. Life is no longer the same for him. He has learned how to use his computer with a mouthstick, but there is little for him to do because we use our hands for so many things. It also changed my life because we were planning to travel/camp in retirement, and everything is complicated now. We are blessed in many ways, but struggling to find ways to make the most of life.
GEORGIA ST.
I got diagnosed with LEMS just three months ago. I had symptoms for over a year, but the past three months was when it got unbearable. I couldn't eat, I couldn't walk I even couldn't breathe. It was a torture. I got in the hospital and got some infusions of IVIG and I am able to eat and breathe, which is good. But I struggle to walk and the medication doesn't seem to help. Every night I pray that I will wake up able to get out of bed without having to drag myself. I try to be positive but I can't believe that I won't be able to do so many things that I love and I never had the chance to do. I am only 25 years old, I thought I had so many years to do everything I wanted like travel, go skiing and so many other things. I took everything for granted and now I don't think I will ever do them.
Lori Dunham
I am sorry to hear of your LEMS diagnosis. My daughter thought she would not do a lot of things she used to love doing but after some time, she has gained a lot of strength back. I pray you can find some relief as you look for the right treatment plan for you.