I have started to write this post a handful of times. I planned when I would write it, how I would write it and *if* I would write it. Each time ended in the closing of my computer and the thought of saving it for another day.
It doesn't feel safe.
But I'm going to do it. I am going to share the personal on a very public stage. (Because it seems I have an international viewership, y'all.) Before I get started, I need you to know two things:
(a) I am nervous to share this with you because I fear your response. I don't dread your response. I fear it. I fear it because I know you will all mean well when you offer advice. I know your words will come from a well-meaning heart. I am just a little fragile right now and I am not ready to hear of every story, person and experience you have to share with me. Thank you, but no, I am not ready to make connections {about it} with those beyond my people yet. I am learning that my favorite response so far is not a solution but a simple admission that it sucks. Do with that what you will, my loves.
(b) I am OK. This is a post that has been considered over and over. I am ready to share it. Be gentle.
Here goes. In February of this year, I was diagnosed with Multiple Sclerosis. It was a devastation but not a shock. If you have been reading for any amount of time, you know I have had on and off again struggles with eye trouble. (Specifically recurrent Optic Neuritis.) While the two years of eye woes were troublesome (and even involved an eye patch for a season), they were not reason enough for the real worry. Until, Christmas Day, I woke up with a numb left leg. After a few days of denial and confusion, I finally made myself say the words out loud to another person. I told Erin and she let me know it was time to call my neurologist. A month later, after a spinal tap, spinal headache and some serious love and support from my people, I was given a new title to add to my story- MS patient.
I have had it fairly easy, friends. As far as MS goes, I am so fortunate to have had blurred vision and numbness as my experience. I am not saying it is easy but I get that I am fortunate. With that said, I am currently battling a bout of profound numbness (yet, somehow, pain too... rude) in both feet and my left leg. It is completely frustrating to have trouble getting around and I will be glad when it passes. If I had to say one nice thing about MS, I would say it is a disease of seasons. How wonderful to know this one will pass. That is mercy.
In order to share that info with you, I must share the other half. My thoughts and truths so far:
1. I am so loved that it is scary. I actually don't know what to do about it and that makes me the most fortunate girl you know.
2. I am afraid but not despairing. There is a difference.
3. I cannot do next week yet. I can do tomorrow. It is my new mode of operation.
4. I am amazed by the amount of homeopathic solutions available.
5. I do not want to take injections for the rest of my life but I am not going to spit on progress either. I am just not ready to start them yet (and hope I never will be.)
6. MS will be part of my story but it won't be the whole story.
7. I go through emotional changes, regarding my diagnosis, rather often. One day I am empowered and the next I am just sad. I have touched down everywhere in between. This will be the case forever. If we talk about this face to face, please don't be alarmed if I laugh about it or if I cry. I wear both hats every day.
There are many more thoughts I have about this disease and the community surrounding it. I won't share it all here, though. I could spend an hour listing the people who have spoken life into my situation- breathed hope. I can't list them all. I could share all of my specific fears but I won't give in to them tonight.
So, why now? Why share this 6 months later? Well, I'm glad you asked. I am participating in a bike race the first weekend in October. It is called "Jack and Back" and will be a bike ride from Nashville to the Jack Daniels distillery in Lynchburg. I am riding with my team from work and my brother in law, Chad, is even coming to ride with us! I am looking forward to the challenge and hope I can do it well! It is 150 miles split over 2 days and will require a new wave of gumption from yours truly. I am up to it and growing more and more excited each day. If you would like to, check out my PAGE.
I have no plans to start writing about MS in this space (where we tell stories.) I am not ready for that. I just needed to let you in on my life and, even though it is scary, mom reminded me- I am not a person without Hope.
xo.
20 comments:
So profoundly proud of you, and humbled and grateful to know you. This is completely unfair - and yet, you tackle each day with humor, honesty, joy, and aplomb.
Quite simply, you astound me.
If my love for you was a bomb that I threw at you, you would be completely and totally exploded.
I like you. A lot.
You are brave and strong and so loved by many, including me.
You ARE SO LOVED and we are praying for you, sweet friend.
Conner
You're so right when you say you are loved. You are loved BIG TIME. You and my mom have such similar responses to MS. I'm gonna email you the natural treatment that she is about to start trying. No shots for her, either....at least as long as she can help it.
Missing you! HUGS to you my brave, fun, beautiful, lovely friend.
I luuuuuuuurrrrrrbbbbbb you. And can I "like" Annie's comment? Sometimes I want to punch something really hard to show how much I love you.
Love you, Kelley Kirker. We all need hope, and that's exactly what we have.
I could not love you more. One day at a time-my sweet friend! Thankful for you.
Hey Kel...I'm glad you shared this. I appreciate you very much and miss you even more.
I love you Kelley Kirker and right now I am imaginary face-scrunch-hugging you. (You know, when you hug a friend you haven't seen in a while and you just love them a lot and your faces smush together and you squeak a little.)
And WHAT. 150 miles shutyourface that is a long bike ride- you are so fierce!
xoxoxoxoxo!
thanks for sharing... i LOVE you... coming to nashville soon and hope you'll be there so i can give you a HUGE hug! xoxoxo x 1,000
add me to the list because I absolutely adore you. love love and more love.
you have hope AND courage.
xo
You are beautiful in every possible way and i just love you. I have been scouring ebay everyday looking for a road bike to do the jack and back with you. i didn't forget. <3
How am I just now reading is? I live in a hole.
You need to know two things:
1. I am so proud of/ thankful for/ encouraged by/ adoring of you, my friend.
B. When I think of you and who you are, most times the MS doesn't even cross my mind. Partly because I forget everything all the time, sure. But mostly because you are just so much MORE. And that, sister, will never ever in a million years change.
I love you.
I missed this until now...wow. So proud of your words and sharing this here, hate this thing for attacking your body, and will pray for encouragement, continued peace, and healing!! Love you so!! <3 <3
Still... a month later, I am overwhelmed by your love and care. Thank you. From the bottom of my heart.
love,
Kelley
holy sh$&^%$!!!!!!!!!!!! how did i miss this? i'm so sorry i have seen you and only chit chatted about your hair!!!!! (which i love as red by the way!) kirker!!!!!!!!!!!!! i'm so sorry! ok, so mojo's mama has MS and has put herself in remission. will email you shortly with more info.xoxoxo
From:Sir Ted; Kelly,I am a good friend of your Mom & Dad. From Boca Raton FL. I worked in Queen Marys Hospital in England for 2 years when I was 19-20 years old as an orderly in a MS Ward. It was the best two years of my life. With the challenges then and the advances in knowledge now you have better possibilities.I will pray much for your stabilty and success. Attitude is a key factor in winning a battle. At the Queen Marys Hospital we had such a lot of fun. We did alot of naughty things in the process. Mischief which created belly laughs among the boys in our ward. My heart goes out to you as a sister in the Lord. Saw your Dad in Boca a few weeks ago at FAU. I am going back to FAU to be active there. Sir Ted Seymour. Boca Raton FL. (Ask your Dad about the "Sir" a complete phoney)
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