My Independence Day: Reinventing Ability with SPMS

My Independence Day: Reinventing Ability with SPMS

The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain.

I can relate to celebrating one’s independence. Multiple sclerosis (MS) is my Britain. Although I am not physically free of MS, I have an internal freedom.

After 10 years, and now in the secondary progressive (SPMS) stage, I find myself needing more assistance. The degree varies, as no two days are alike. This has been a psychological adjustment. I become obstinate as my needs increase. Asking for help is not my strong suit. This said, I am silently grateful for the help given.

Learning to navigate life with SPMS is a continuum. Asserting my independence is my way of rising up against this disease. As I lose abilities, I reinvent myself. I am a phoenix in the face of change. I do what I can with what I have. In this way, independence is always possible. My baseline is not 10 years ago or last week, it is the present.

Three days ago, I flew from Orange County up to Marin, California. I usually make this trek accompanied by my husband. He silently looks out for me, ready to help in any way. I feel a sense of security when we are together. This trip was different; I decided to visit my parents on my own. This was not an affront to my husband, and I am fortunate he does not take it as such. This was more of a desire to come home, a time to spend quality time alone with both my parents and sister.

In Marin, I continue to write.

I smile as I look out across the bay. San Francisco glistens in the morning light. I am 500 miles away from home. I am a world away from dependence, if only in my mind. I made the trek. Again, the phoenix rises. This trip illustrates hope amid change.

The need to have some measure of command is both physical and psychological. It is essential to keep both body and psyche strong. Am I aware that progression will continue? With certitude. There is nothing wrong with need or dependence on another. I would not be here in Marin without such help. I had assistance from the airline, kind strangers, and my parents. Determination continues to be my personal weapon against SPMS. While so much as been taken, much has been left.

This challenge looks different for everyone. It will continue to change for me, as well. Independence is a mindset. It is a willingness to persevere within everyday confines. It is the ability to reinvent yourself. It is the desire to hold hope when change is inevitable.

Leave the ashes of your former self and rise. You are a phoenix.

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Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

2 comments

  1. Julia Farris says:

    I have been in SPMS mode for a while now after 15 years of being “okay.” My limitations are greater than they were at first. My husband and I were hoping to travel in our later years (I was a former airline employee) but the last time we went on a weekend trip, all I could keep thinking about was being home, where I have the things around me that help me cope with daily needs.

    Sleeping in a bed after being in a recliner for so long is not pleasant. A handicap bathroom that is not set up like the one at home makes me so uneasy. Hoping to take a shower and then finding the set up is on the opposite side of the one at home (I am hemiplegic on the left side) meant no shower for me, as it was too hard to maneuver.

    I try to be positive about travelling because I really want to get out into the world, but when I do, the burden on my poor husband makes me have negative memories.

    • Jennifer Powell says:

      Dear Julia,

      Thank you for writing and opening up about what you are going through.

      It is painful reconciling our dreams with our reality. It is a continuum. Please be kind and gentle with yourself. You deserve nothing less. Perhaps plan an achievable getaway for both of you? One night nearby or a weekend somewhere you are familiar with can build your confidence.

      A shared experience with your husband will bring you some much deserved joy.

      Please keep me posted. I’m keeping you in my thoughts, Julia.

      Kindly,
      Jenn

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