I won’t give in to the heaviness of my daughter’s illness
The burden of her LEMS diagnosis has sometimes felt unbearable
The day my 14-year-old daughter couldn’t get out of bed on her own was the first time I really felt the heaviness of life. It was then we knew we were facing a major health issue.
At times, especially before Grace’s diagnosis, the weight of her illness felt unbearable. I felt as though I were being smothered by anxiety. Our world seemed out of control, and I thought at times it would come flying off its axis.
The weight I felt from Grace’s symptoms and diagnosis waned over time. With treatment and medication, I came to understand Lambert-Eaton myasthenic syndrome (LEMS) as a manageable illness.
But every now and again, the heaviness of what LEMS means in her life weighs on me. The difference is, I recognize when that heaviness creeps in now. It doesn’t knock me over as it once did. But occasionally it still hits hard.
On not giving in to the burden of disease
It’s not like our family had never known life’s burdens. My husband and I had multiple miscarriages, and people we loved have died, but this illness came out of nowhere. Grace’s LEMS diagnosis in 2019 felt like a tragedy to me.
There was no road map to tell me how to walk through an experience like this. I didn’t have a friend who could relate to my situation. No one in my circle of influence knew quite what to say to me. They certainly didn’t know how to help me.
I was plagued by the question “why” — why does my daughter bear the burden of this disease? Why is her life derailed while everyone else goes on without a care in the world? Those questions and the unfairness of it all had the potential to leave me bitter and angry at the world and everybody in it.
I knew I had to squelch such thoughts. No one is promised an easy life. Most people don’t have one, even if it looks like they do.
The bitterness I was feeling was poison to my soul. I knew I couldn’t allow it to grow and fester. I needed to stop that way of thinking, unless I was willing to be swallowed up by it and wallow in it.
I knew I wouldn’t tolerate my daughter feeling this way, despairing and seeing us all as victims of circumstance. I couldn’t allow myself to feel that way, either.
Finding a path forward
I learned to do some little things to break free from the heaviness. I began to journal about everything I was thankful for each day. I played upbeat music and lit candles. I bought bouquets of flowers and special chocolate. I looked for the good in each day and each circumstance.
Of course, there are times when a little more than that is needed, when the heaviness bears down a little harder. It’s times like these I think it’s best to seek help from a professional. No one needs to suffer alone. There are loving people who can help and offer hope.
To recognize when help is needed or when a change in attitude is required is the first step toward healing. Have our circumstances changed? Not completely. But my attitude shift has changed the culture and atmosphere in my home for the better. We no longer feel enslaved by circumstances outside our control and we’re actively working to create the positive life we all need and enjoy.
What buoys your spirit when you are low and laden down with the burdens of life? Let me know 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 myasthenia syndrome.
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