I’ve had MS for 21 years, 6 months, 16 days, 19 hours and an undetermined number of minutes. Of course this was only accurate for the brief moment when I typed it and now the number has changed – as has my experience with loss.
As the words Multiple Sclerosis rolled off my diagnosing doctor’s lips, my fear lingered on what I would lose. It was all I could hear. From that moment on my future would be dictated by the loss de jour. With no menu-board telling me what I could expect to be served, I flinched not wanting to look forward. I began my 20s with undetermined, inevitable loss. And though my actual symptoms were slow to start… the loss (of security, confidence, constancy, steadiness, reliability, uniformity, evenness, permanence, solidity, stability, sure-ness) leaves me lost.
I lost my best friend 1 month, 9 days, 18 hours and an undetermined number of minutes ago, and that number is constantly changing. In all of my years of living with loss, nothing could prepare me to cope with losing her. It is a wound that will never heal. Like the scarring on my brain that doesn’t allow me to stand too long or walk too far, no neurons will compensate for the ones that have died. And while I will go on with my life, I have to relearn who I am without her. And I flinch not wanting to look forward.
My loss goes beyond physical limitations or the uncertainty I must embrace to keep going. My loss lives in the fear that I can’t be me because of all that isn’t here.
***
Life isn’t static. Everyday we all have new input, new experiences, new reactions and new understandings. For me, one day can bring multiple levels of change. Like the other day, I thought I would run an errand. We needed some miscellaneous items from the town stationary store and my daughter had some money burning a hole in her pocket that she felt sure would be much happier in the local toy store cash register. So we set off and I dismissed the question marks that always fill my head when I leave the house without Keith. Of course I can go pickup a few things with my daughter. What is more basic than a mom running an errand? Unfortunately my apprehension was validated. After finding a parking spot too far away, walking to the stationary store and the toy store around the corner, I was exhausted. I could barely stand up as Madeline raced around trying to decide what her spending money would allow her to take home. I counted down the minutes I had left on my feet and alerted her to our pending departure. In a quick moment she made her decision and purchased a bear made entirely out of recycled plastic bottles. But as we started to leave she had changed her mind and wanted to return it. I’m not sure how I would have handled it, had I had the energy to make a reasonable decision. All I knew was that if we didn’t leave the store soon, I wouldn’t make it back to the car. After explaining that I couldn’t stand anymore, an angry Madeline left, ran ahead of me and out of sight. Unacceptable behavior under any circumstances – but it left me stranded in inadequacy. I was unable to be a mom on the most basic level. Frustrated and deflated, I limped toward the car, silenced by the distance and my lack of ability.
Of course she knows that running away from me is wrong. Was she just the petulant child storming off because she didn’t get what she wanted? Or was she running from the reality of my MS and how it impacts our everyday.
At home that night, Keith and I were discussing how we would talk with her the next day, and I was feeling lost and un-able on so many levels. It is so hard to be forced to look at the basic things I can’t do. It knocks me off of the optimistic determination that carries me on most days. And I’m flailing as I search desperately for a foot-hold.
Later, I im’d a friend venting my frustration and adding to my list of witnesses. He told me of when he was teaching his kids the importance of holding his hand. Saying he needs to hold their hand so that he doesn’t get lost. And if they separated, they would grab his hand and say “Daddy, you don’t want to get lost.” It wasn’t too far a leap to recognize that Madeline and I both need each other to be safe in the world and stable on the ground. Reminding me of the very recent memory of two dear friends who came to rely on each other in just that way.
This is the loss I feared, 21 years ago at my diagnosis. I left that toy store unable to keep my daughter safe. Watching her do what I can’t do, out of the realm of my protective arms. She, running from my MS, masked by anger and frustration about a bear, and I slowly follow, wondering who I am. And just now, as I type this on what would have been Linda’s 43rd birthday, I find her… I know what she would have said had she been here. And I know that her presence will always help me- be found.
MS~LOL: Multiple Sclerosis a Life Of Learning 
Big hugs to you Amy! Your pain is palpable still and yet your insight is meaningful on many levels. Thank you for sharing.
Thank you Lisa… your perspective is always appreciated.
This brought me to tears Amy. I would give anything to take this pain away for you… but all I can offer is my love, unending concern for your well being and a strong faith in WHO YOU ARE, even when you don’t know. I am touched that you anticipated what Linda would say… and hope you find comfort and strength in your eternal connection with her.
Hard to find the words to respond to your response. All I can say is thank you.
Amy, my heart is breaking for you, Keith, Madeline, Linda, her daughter and family. Especially YOU! The loss of your dear friend is hard enough,without the added stress of MS and all the difficulties that come along with that!
I truly believe Madeline had NO intention of hurting you and think that the friend’s suggestion as to how to handle the ‘hand holding’ is excellent. She is old enough and wise enough to know just how much you need each other. Let her know you DO need her in so many ways.
And do NOT hesitate to use whatever you need to get around…..your scooter, a walker with a seat, etc etc. Been there, done that, but if you are going to have a life, you need those assistive devices……………
Gentle hugs from the boonies of Washington State! Connie
Connie,
It didn’t even occur to me, not for 1 second to use my scooter. I guess had I considered it I would have felt it to be too much for me to handle it by myself… and too frigid outside to want to touch more metal.
Thank you for your comment Connie~ As always I appreciate your words, and as in most cases you direct me to consider something I haven’t.
That means the world to me!
xo Amy
Powerful post Amy-
Thanks for reading Mitch… I really do appreciate your every response.
xo amy
Amy, I was going to reply, but everyone else has said it for me. All I can say is that I love you very much.
That is a reply Dad~ Thank YOU very much.
What a brave soul you are Ames.You help me understand you better, and the acts of true bravery that you live through every day.Madeline’s reaction shows how safe and honest she can be with you about ALL of her feelings.She trusts in your limitless emotional strength and endurance. The MS may be the cause of physical and energy losses, but the grace and courage with which you live your life is FOUND in those trying moments.linda would surely feel not only so proud of you, but so touched by your enduring love and thoughtfulness. Her spirit lives on so beautifully through you. What a lovely birthday gift to her and her daughter, who shares the same birthday.big hugs.love,daphne
My dear Daphne~ Having shared so much of our lives, we are connected in an understanding that is beyond words. Reading your response is so meaningful to me- It brought tears to my eyes- which I must admit isn’t too hard these days… but that isn’t to take away any of the power felt by your words. You are a witness to so much of my life, including my love of Linda. Thank you… for 24 years of friendship and love. For being the wise soul you are and all that you bring to my life. xo
Amy, your willingness and courage to share your experience so honestly and vulnerably is such an enormous and precious gift to your family, your friends, and the world. Please know that you are treasured and loved so incredibly dearly, by everyone who knows you!!!!
Ken, I always appreciate you reading my blog, and posting these heartfelt responses. Your encouragement is quiet powerful… and I’m grateful to have you in my life… xo
Amy, What a powerful, love-filled piece of writing I have had the privilege of reading at least 3 times now! You have brilliantly expressed your changing moments, moving seamlessly between what has been lost physically, with that greatest of all losses, which has once again redefined who you are.
How well you make us understand the feeling of powerlessness that comes with both losses and what a toll both have taken on you. Even amid your absolute honestly a and self-scrutiny, there lies that strength fighting to resurface, so that you survive and move on in this most uncertain time of your life.
Those of us who have lost that most precious person in our lives appreciate seeing the grieving process playing out right before our eyes. We appreciate how much you share of yourself and how well you express what we have felt or are presently feeling as we endure our loss. It unites us and comforts us to witness your struggle to assemble a puzzle that has a major piece missing. And although you are flailing right now, we have no doubt that you will find a new you, who will emerge with loving memories of Linda as your anchor.
How fitting that you were able to recall Linda’s words when you missed her most. It is those deeply embedded memories that will allow you to define yourself as a person with MS, and as a person who has suffered and survived the loss of her best friend.
I can’t help but wonder what words of advice you called to mind, when you thought about what Linda would have said? And I loved reading you were able to do that, since I know how comforting it is to know someone so well you can imagine what they would say in times of sadness or frustration.
Thank you for this essay of love and loss that generates so much honesty and hope and courage. You are very special on so many levels, my friend!
This was a beautiful post. I am truly sorry for the loss of your friend.
Wow Is all I can say. I am truly sorry for the loss of your friend. You are beautiful, moving writer. All the concerns you mentioned are just now starting to invade my bubble of peace. Well actually I guess it started about 2 years ago but I still like to live a life of forgetfulness. However two years ago I missed shopping with my daughter for her high school graduation dress and almost missed her graduation. I have two little ones now, you can’t help but let the doubts and fears seep in a bit about what I might miss with them. Thanks for putting my thoughts down in writing and making face them if at least for a brief moment.