Nicole's story
A Note From A Sufferer's Parents
My mom and dad have been through hell and back with me and I’m convinced they are angels sent to earth from heaven – God’s literal army He enlisted to keep me alive and going. They aren’t perfect, by any means, but they are compassionate, patient, kind, forgiving, loving, and supportive.
When I approached my parents and requested that they write a letter or a short essay describing what their perspective has been while watching me struggle through chronic illness, they responded with a bullet point list. At first I was a bit frustrated with them for not being able to compose actual writing depicting their experience.
As I began trying to compile their list and decide how to present it, I finally realized why it is they were unable to write a more complete essay for me.
My parents are walking through this journey along side me and the cold-hard truth is that this journey is far from over. There are still so many things that are unknown and unresolved. I am struggling to come to terms with things in their current state and to decipher my feelings surrounding this battle...and similarly, my mom and dad are still too close to the battle themselves to have been able to process things to the extent they need to be processed in order to write objectively about them. When they sat down on the other side of the computer screen to compose something for me, they were stumped...likely because they weren’t entirely sure themselves how they are feeling regarding things.
Things are still in the “this IS scary” mode instead of the “this WAS scary” mode. And that’s okay. These things take time and there’s no right answer as to how to process them and in what time frame they should be processed.
This is the list they gave to me regarding their current emotions and thoughts surrounding the experience of watching me, their daughter, struggle and fight my way through a serious chronic illness:
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wishing we could fix it for you
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helplessness
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concerns about quality of life
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unfair
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not seeing an end in sight
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possible life-long struggles
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wishing we had greater financial means
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we would trade places so you don’t have to suffer the pain
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worry/anxiety over medication side-effects
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worry over potential surgeries and treatment side-effects
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wishing we had greater financial means
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worry/anxiety over potential future health issues
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not wishing this parent experience on my worst enemy
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not being able to see and end in sight, not knowing when you would get better
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terrified
A Note From The Caretaker
Nicole’s Story ~ A Daughter’s Perspective:
I was only a toddler when my mom was diagnosed with Multiple Sclerosis. In the beginning, it didn’t affect our lives quite as much as it does today. I say, “our lives,” but she is the one that truly knows the struggle of this vicious illness.
At first, she would have flare ups or exacerbations that would last a few days or a few weeks. The heat or being tired were usually the culprits. During an exacerbation, she would have an increase in tingling, a decrease in her ability to walk either for a longer distance than a few yards without resting, or just in the heat. She would have vision problems, urinary tract infections, and exhaustion. I remember still going on relatively normal trips where she could walk decently until about the age of 12 (I’m now 25). Over the last 10 years it has progressed steadily. She’s tried several of the high dollar treatments with little results. If my dad didn’t have the job and insurance he has, there wouldn’t be a possibility of her even having access to these medications.
She is now 52 years old and retired mainly due to her illness. She walks with a cane when she is out of the house and has an electric wheelchair if needed. She can’t travel very easily due to her mobility issues so vacations are rare. Going on walks or shopping trips with her is not possible. My entire family does anything we can to help her. Usually that looks like extending an arm to help her walk or helping her paint her nails, but she never asks for help. My mom is the toughest lady I’ve ever met. She doesn’t complain about her MS, rather, she says she is lucky. She says she could have it much worse. She still tries her best to do everything she can around the house and for my sister and I. My mom is a fighter and the fact I still have her is my biggest blessing.
A Note From A Sufferer's Friend and Advocate.
"Stay positive. Be present. Perform well. Pursue my dreams with all I have when some days I knows it won’t be enough. Engage with people. Get out of bed. Love well. Don’t be grumpy. Hope that some day the pain will be gone. But for now I soldier on, hoping to make a difference in this world by being an overcomer. Through trusting in my Savior, the love and support of my fiancé,family, friends and dog I can have enough for this day that I have before me."
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That’s what it has looked like day by day to walk with my friend through this journey with chronic headaches for the last year. I have seen her take medications that reduce her headaches enough to function while they throw the rest of her body into outright rebellion. It seems as if the medical community has no clue how to help and is insensitive to cost and to how much time goes by between possible solutions. I pray for healing and in the meantime see great resilience and strength in her while she pursues further medical treatments. Living life the best she can on one hand while expending time, effort and resources to pursue a remedy and maintain hope for a future without headaches.
