The Next Purpose

I can still remember the day clearly. Steve and I had gotten into a fight, about him wanting a pill and it not being due, which was the bulk of any disagreements we had. After Steve coded in 2013, where his heart actually stopped, we never allowed our fights to drag out. We never wanted to have unfinished business for when the time would come.

It was an odd blessing to our marriage, that even if we never wanted to look at the other person again, we often had the perspective of how we would feel if we truly never did get to, and it made whatever we were mad about in that moment seem a lot less serious.

I walked in to apologize to Steve, for calling him a piece of shit addict, which was really my go to response to him repeatedly asking me for a pill he knew very well wasn’t due. I had my shame face on and I started by saying, “Can I tell you something other than I’m sorry for my reaction to your want for pills?”

His eyes which were glued to the Tobii already typing his response to what he thought I was coming in to say, stopped and looked at me. One blink, which means yes.

“You gave me purpose.” He smiles but doesn’t look away which means, continue.

“Before taking care of you I fumbled around in different jobs wondering why if I was doing what I set out to do, why I was feeling so unfulfilled. Even though I wish you were healthy, and we were having an argument about something like who forgot to fill the gas tank up, I wouldn’t trade it because taking care of you makes me feel for once like I do have a purpose.”

He smiled, and started typing, “I gave you that.” He looks proud, and continues, “You deserve to see yourself like I do.”

He did give me that. Our 9 years together were messy, challenging, and often times heart shattering, but he filled me with so much love, and taking care of him was my greatest pleasure and accomplishment. Prior to Steve I really felt too dumb or too incapable to do anything like I had been with him.

His encouragement through every stage of progression and his full faith in me opened me up to seeing just how capable I was. From learning his feeding tube, to learning to dig/suction vomit out of his lungs before he aspirated, to learning to suction his trache, to learning the vent, and learning a picc line, and all the way to learning to save a human when he is in true respiratory failure, over and over again.

I remember the day clearly that Steve called me in to tell me, “Having ALS is my purpose.”

I remember looking at him very much the same way he would me when I wanted him to tell me more. He typed, “I’ve always wanted to make a positive impact on the world, but I never had the reach to do so without ALS. Everything they come out and say could be a cause of ALS I have. From head trauma, to being an athlete, to exposure to herbicides or pollutants, blue green algae, getting jumped and hit over the head with a baseball bat.”

He finishes, “My entire life has been helping prepare me to have a life where I could impact people by giving me ALS.”

I always loved Steve’s thoughtful way of thinking, but it took me a couple days to really process what Steve was saying, but I remember replying, “I wish everyone the same peace with their circumstances as you have this minute.”

Together Steve and I faced our darkness and our light, and learned how to shine that light out into the world. While I saw my purpose as being his caregiver, he saw his as being a messenger. Not just for ALS awareness, but he wanted people to live their lives to the fullest before illness hit. He wanted people to learn how life could change in an instant, and be grateful and an active participant in their lives.

Even later in life as more people questioned his quality of life or why he would endure as much as he did, he never wavered from knowing that his suffering had great purpose. He wasn’t done teaching, he would say, until God was ready to take him home.

If you’re reading this and don’t know why I’m talking past tense, know on April 2nd Steve ended his battle with ALS and left this world in his sleep. His lungs had been failing for a long time, so his CO2 was built up, and he went to sleep more and more each day until one day he didn’t wake up. Of all the scary ways in which I would imagine him dying this was far more peaceful and gentle.

In the little over a month it’s been since Steve has left this physical plane I have felt a massive hole in my existence. I know being alive and really just being is each of our purposes. I know we don’t need to have some goal or job to be working towards. I feel the world really leaning into that as the pandemic has changed the world as most knew it. This world of pause and unknown has been one we’ve lived in for years.

As I am in a new area of unknown I have been feeling the ease my body is experiencing in no longer having anxiety and the intensity the last year of care giving was, but also have felt more lost on what’s next. As I’ve been sitting around trying to determine what I will do now, knowing my little cushion our friends built for me financially won’t last forever, I’ve struggled.

To me nothing will ever feel as purposeful as taking care of Steve did, so it’s been hard for me to see past that. I have had many conversations with Steve out loud and while I feel his presence and he has shown me lots of feathers which was how he told me he would communicate I have felt lost in direction or purpose.

Recently the necklace he picked out for his mom years ago was delivered. He picked it out cause he said my mom needs a dainty ash holder cause she’s a dainty woman. What mom doesn’t love a necklace picked out by her own son years before his death? She put it on right away saying, “I’m never taking it off.”

We then carried on conversation as usual, when suddenly in our “what’s next chats,” I begin to imagine it’s him talking through her. It’s clearly her talking but I can feel it’s him talking through her. I decided to lay down after she left because despite feeling mentally and physically okay in this new space , even if a bit lost, I feel very easily fatigued. So I’ve been giving in and spending a lot of time resting.

While napping I had a dream, it was Steve and I walking through an unknown landscape but it was more beautiful than anything I could have imagined. We were hunting rocks and I actually reached out to a friend after waking up because I want to know the stones I was seeing in the dream.

Each time we would stop to pick up a rock, he wouldn’t say anything except, “You know what to do.” He didn’t give me any straight up suggestions, but I woke up from the dream hearing his moms words, followed by him saying, “you know what to do.”

The day Steve died I remember feeling two very distinct feelings. 1. Shock, and really shock about the shock. It was surreal to have the cops and medical examiner and Steve’s family there, and to be witnessing the finality of it. No matter how much I knew this day would come, and even more so in this past year knew it was coming sooner rather than later, I was in shock. I was heart broken but the shock eased that pain. 2. Suddenly I felt very empty. The weight of the empty quiet house was nothing compared to the weight of an empty quiet soul. Steve made me a better person, he gave me faith in myself, he gave me focus, he gave me purpose and understanding like never before. He fulfilled me, and loved me, in all my pieces dark and light. He saw me more clearly than I even could myself. I knew I lost my soul mate but it felt like I lost my very soul.

I hung on to the numb until little by little I’ve come back to my feelings. While I don’t know specifics of what is next, I do know what to do, and that is just show up. You can’t find your next step tuned out or with your head in the clouds, like I’ve been. I need to show up, and listen to what my days are bringing me. Show up to my computer and write what words want to come out. Show up ready for opportunities that the world will bring to me. Show up ready to learn, to see, to not know but ready to know.

I opened my journal after that dream, and wrote pages. None of it was a clear step by step what to do next outline, but it was an understanding, that if my life had prepared me for and brought me to Steve, then why would I believe now it wasn’t preparing me and bringing me to what’s next. Why would I lose faith now?

I know I’ll actively have to earn money in the near future, and as I unravel my how I’ll do that, I am learning to open up and trust that the what’s next will soon follow. Mostly Steve wants me to remember that whatever is coming I am capable, I am smart enough, I can learn or adjust in anyway I need to. Just because Steve is no longer physically here doesn’t mean his encouragement isn’t. He had full faith in me being able to keep him alive in the most fragile and complicated circumstances, and I can feel his faith in my now what moments.

His gift that shifted my life to feeling more fulfilled and full of light, is still there shining bright as ever, and I just want to say thank you. What a gift. What a blessing. What a purpose. What a guide. What a man.

I miss you boopy, I will miss you daily, but I know you’re right. I know what to do. Life is about showing up open hearted and I know I can step into whatever next step comes, because your encouragement is still here. It always will be.