Recently I received a message from a fellow ALS’er, reaching out for support due to unexpected retirement. The fact that this was inevitable was not the surprise. It was the circumstances that precipitated this. It still hurts, having to retire due to illness. I have to agree with this.
The main concern for many of us is how much of our identity we have invested in the work we do. If we truly enjoy our job, career, calling or purpose. It feels that we are losing a piece of ourselves having to stop, creating an existential crisis.
I say purpose because not everyone has a traditional career by definition. Mothers fathers, siblings, grandparents and extended family all have a role, until ALS strikes. Don’t mistake job with role, all of the above are important roles. When these roles are taken by ALS, it is devastating.
So what now? As your body betrays you, you now have to come to terms with having to stop working. But are you really no longer working? No longer employed, yes. Earning the income you were, no. I know it’s a philosophical perspective, but you’re still working, working to live with ALS.
The same person shared that they spoke to their neurologist about how heart wrenching this transition is. I was very glad to hear this. All to often we have the misconception that we must present a strong countenance to the world. Every damned thing about ALS is painful, what it does, what it takes, and what it forces us to do. All while exacting a mental toll unlike any experienced by many.
There is no one way to get through this, each person has to find what will fill this new void. Purpose is what we believe we have lost. Perhaps reframing our definition of purpose, within the context of still living, all be it with drastically progressing physical challenges. But still present in our life.
I have found purpose in writing and advocacy, that and continuing to be a husband, father and more. Purpose is what you decide is important to you, for the remainder of the time you have. This is entirely up to you and those that surround and support you. Living with ALS is hard work, living with purpose in spite of ALS is a state of mind. Not easy by any means. Give yourself some grace and patience, you’ve earned it.
TJO
Thank you for that perspective. I am moving quickly in to a caregiver role and fully anticipate having to leave my job. I was just pondering that today. I would give up anything for my husband but it sure does suck. Thank you again for the inspiring words.
This is so inspiring! Daily I work with my state of mind and how my purpose looks different since living with ALS.