Coming home from the hospital should be a time of smiles and celebration — especially after surviving multiple strokes and spending nearly a week in the ICU, as I recently did. But isn’t life always more complicated than we expect?
The fact that I’m alive is remarkable. And having only minimal damage to my eyesight is nothing short of a miracle. I shouldn’t be sitting here writing this.
An artery in my neck is completely blocked, and no blood can pass through to my brain. Yet, less than two weeks after having five strokes, I’m here to share my experience. The thought of this will always send chills through my body.
It’s strange to say, but coming home from the hospital was the most challenging part of my traumatic experience. My family brings me immeasurable joy, but knowing what I stand to lose ignites a fear inside. I don’t want to miss out on any of this. The good, the bad, the ugly — all of it is a gift.
I want to be part of my family’s lives. Like everyone else, I know my life and condition have no guarantees. Still, when things like this happen, I feel like my “luck” is running out, like a video game when the “life meter” keeps draining. I’m scared I’m running out of life.
Fear continues to show its nasty face in other ways as well. Life continued without me. My kids went to soccer, dinners were shared, and homework was completed. The world continued without Lisa.
Don’t get me wrong, I want my family to be OK without me. I work hard to ensure that I’m raising strong, independent, and capable girls. I’m a planner, and my husband is amazing, so it’s no surprise that things ran smoothly during my absence.
But for some reason, it hurts my heart to think that I wasn’t needed. Being on the outside and knowing they can do things without me makes me feel isolated, which is a lonely and scary place to be.
I must force myself to stop dwelling in this dark place. I know my hugs and bedtime kisses can’t be replaced. I understand that while I was gone, I left emptiness and sadness in their hearts that could only be healed by my return home to them.
I’m needed in ways that cannot be measured by daily tasks. Cooking, cleaning, and completing chores are simply ways in which we survive in this world. Who we are and what we offer to our relationships is where the magic happens. There’s only one of me, and I can’t be replaced.
Still, I cry often and have to ground myself with these reminders. Isn’t this way of thinking always easier said than done?
My survival and return home have been brimming with other emotions, too, such as guilt and anger. I am angry that I’m not healthy. I eat a plant-based diet, exercise, and control my stress. Why is this not enough?
I desperately want to stop putting my family through these traumatizing experiences. Mommies shouldn’t sleep in hospitals. When terrifying things happen in their lives, mommies should be there to tell their babies that everything is OK.
This type of rage is tough to control. I can’t be outraged at anything tangible, and I can’t fix it, either. The only thing I can do is remind myself that it’s not my fault. My family and I don’t deserve this, but we will get through it.
The sun still shines
Thankfully, I feel the warm and fuzzy emotions, too. These past few weeks, I’ve been crying happy tears. Every smile fills me with such appreciation for life. Each hug fuels me with the desire to keep fighting this uphill battle. I have to stop myself from becoming a blubbering mess when I tuck my sweet kids in at night.
I realize now, more than ever, that these small moments are precious gifts that were almost stripped from our lives. I’m so grateful for all the fortunes that each day brings. I don’t need fancy vacations or even a clean house. I only need my people around me!
We can’t control which storms roll in and sweep us off our feet. Sometimes even our ugly emotions get the best of us. The only thing we can control is how we spend our moments. Power through those emotions and find peace inside. And when the rainbow finally peeks through, grip the beautiful gift tightly!
Being grateful for what we have and embracing our good days is the most important thing we can do for ourselves. That’s how we recharge so that we can fight another day.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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