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.