I Make Myself OK: Musings with Secondary Progressive Multiple Sclerosis
Not everyone is going to get it. And by “it” I mean our disease and the way it affects our lives. Few understand our limitations or the ramifications of pushing past them. Many people are perplexed when, having witnessed our smiles and strength, they see us suffering. Others cannot grasp how at times the treatment is worse than the affliction itself.
No, not everyone will get it. Some will refuse to accept the frightening reality that we face. Others cannot see our vulnerable tears without trying to comfort us by reminding us of what is right in our lives. Some do not want to deal with a person who is sick.
Some of these people are acquaintances and friends while others are family members and co-workers. They are in our lives, but they may not be willing to embrace our lives. I want so badly to say this is not OK.
But it has to be. And that is up to us.
I have had to shift my perception to take me out of the equation. I’ve been bold in the face of hurt and forced myself to step away from those who are unable or unwilling to understand. I have grown accustomed to self-soothing and to making any given situation OK.
I no longer look to a referee; I am the game changer.
I am honored to know strong individuals who live with the most incredible challenges. A particular character develops from living in survival mode. Gone is the luxury of granting consideration to the things we cannot change. We live with intention in the present moment. Everything matters; I take nothing for granted. Gratitude is a state of being because everything is a gift, not a guarantee.
At the risk of sounding rude, I have zero tolerance for nonsense. I do not sweat the small stuff and have learned to navigate among the superfluous with ease. I am fiercely loyal and cherish my relationships with my husband, family, and friends. I never miss a moment to let my loved ones know how much they mean to me. Things can change on a dime. And they often do.
I live without regret but possess a hunger to continue to learn and grow. I never dreamed that I would find myself here, just two months shy of my 50th birthday. I didn’t know I would feel God’s grace in the throes of suffering and pain. And I didn’t foresee that my passion and purpose would collide to give me a forum where I reach so many others.
I have felt tremendous highs and haunting lows. It is a gift that I have been able to maintain some semblance of homeostasis. I could not have achieved this balance without this disease. I am strangely assured by embracing transience in health, situations, and life.
These musings were borne of an unintentional hurt. Someone who cares for me does not get it. I am fixing my hurt, licking my wounds, wiping my tears, and moving on.
I am making it OK.
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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.
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Comments
Melissa Vemi
Amen to that sister!I don't stand for any pity parties because I'm the only one that goes and they're typically very boring and lame. Everyday I thank the good Lord that I can open my eyes see sit up stand up and take a few steps and I realized God ain't finished with me yet. life is giving me lemons but God gives me the sugar in the water so I can pass out lemonade to everyone I meet. My glass is half full and overflowing. and yes I am transitioning to secondary progressive but I've had a good strong run for 23 years from my diagnosis date 29 if you consider when I had my first flair. I'm a pitbull I've grabbed onto life took a big chunk locked my jaws and I ain't shaking away I'll take a laws rocket between my forehead to get me to stop. And I don't take anything for granted anymore. I've had my highs and I've had my lows. and I told my doctor Hit me with your Best shot cuz if it keeps me stable great if it kills me I already know where I'm going and I'm ready to get there. Your musings was such an inspiration to me thank you so much :-)
Danielle Stone
I get it. A great article and I can understand your reason for the way the article ended. Good for you, sometimes trying to move forward is all we can do. But I am very glad to hear you have people in your life that love you. Take care and keep on writing. :)
Cindy
I am your unknown twin. Thank you for posting. I'm 55, have spms, former marathon runner, disabled and find struggles everywhere I look, but I am grateful , keep a smile on my face and laugh as much as possible. Thank you for posting!
Sebastian Zacharias
Felt very inspired reading your blog . I am like wise living with MS – Primary Progressive since 2004 I was in my late 30’s then . The journey was not easy , learning to remain strong and to keep going forward was a challenge . I had to provide for my family and two children . Failing and giving up was not an option. By the grace of God I pulled through . Though my mobility has been severely impaired I still manage to drive to work . My daughter is in Med School and my son has completed his masters and is pursuing a Phd in Chemistry . I know I am an inspiration to most of my colleagues , friends and acquaintance’s . I pray that by the grace of God I continue to live a life that will bring faith , joy & a smile to all whom I come in contact with … I wish you the same .
Carol Chambliss
Jennifer,
I'm right there with you. Thank you for sharing, I'm 75 was diagnosed 28 years now. I'm so thankful for all the good in my life and the KAFO that keeps me walking and out of a wheelchair. I drive with a left foot gas pedal. Driving is wonderful. I enjoy each day and ignore my ever present symptoms. God is good.
Helen Woodbridge
Hi Jennifer, I have had MS for 35 years, diagnosed aged 27. Now secondary progressive I am still mostly vertical and I seem stable. I am grateful for each day I feel well enough to achieve something physical. Ms mainly affects my right side. I am an Australia and when I drive I need to us both feet to drive. I brake with my left foot and accelerate with my not so great right foot. I drive locally only. I also enjoy driving when I am able. Keep moving. Helen from ACT.
Cynthia
Thanks , Jennifer
I have had MS for 50 years now.....first RRMS and now SPMS. Many challenges, but have been on Fampyra for a few years...and still on my feet . God is good.
Always enjoy your posts...thanks.
Karen Heath
Thank you for sharing. I to have SPMS but have lived a wonderful life. I am a retired Fam. Med. doc who has an still enjoy seeing people and entering in their lives. I still see patients at an immigrant clinic, teach Fam med clerkship at a university and work at a food pantry. I still can drive with hand gears and have a handicap van. Right now I use AFO on both legs and a walker to get around. If I have to go long distances in walking I have a power chair. But, most of all I agree with you attitude. God gives us the graces to walk our journey with grace and dignity. And a good laugh is the best medicine I have found. Thank you for sharing.
Hollie
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Cynthia King
I always hit a rough patch in November, and I usually bounce back, but a little gets lost each time. This past fall was the same November like the ones before it, but the bounce back wasn’t the same. I know this is my future, and I think I’ve accepted it, but it still makes me cry over my lost self. My comfort is God didn’t bring me this far to let me fail now. I'll be 60 in a few months, 25 years of it with ms. I look back and I'm in awe what of what I've accomplished. There is nothing like a ticking clock to motivate someone. So I sit here waiting for my husband to retire to figure out where to go from here. Waiting is something I was never good at, so I try not to listen to that ticking clock. But it’s always there in the back of my head.