Grief is like an ocean when buffeted by new, and limiting, symptoms

Grief is like an ocean. It’s cold and shocking when you first get in the water. Then the waves are constantly breaking and hitting you in the shallows, each one signifying sadness and emotions washing over you, whether or not you’re prepared for it.

Once you get deeper, your body starts to get used to the temperature as the time between waves spreads out. But as you finally become comfortable and able to stay afloat, a new wave washes over you. The waves might be uncomfortable, rough, or cooler, but you can handle them better now that you’ve been in the water for a while.

I recently, and tragically, lost both of my parents in what’s been called a historic “1,000-year flood” in western North Carolina after Hurricane Helene. I’ve felt insurmountable grief and sorrow over this ordeal, a type of grief I’ve never felt before. But it reminds me of the only other time I’ve felt intense grief: the time I almost died.

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In September 2020, I was admitted to the intensive care unit with multiple organs failing. My kidneys, liver, and heart were shutting down as my red blood cells and platelets were being destroyed due to atypical hemolytic uremic syndrome (aHUS). Unbeknownst to me, my life would be forever changed.

I went from being a healthy, active, single mom to losing 30% of my muscle mass and being too weak to walk up a single step. My kidneys, liver, heart, and even uterus were permanently damaged and still affect me greatly today. As a result, I’ll be doing chemotherapy for the rest of my life to manage the disease.

The beginning was the roughest. I realized how much physical strength I’d lost, didn’t know if I’d need dialysis permanently, had a port catheter hanging out of my chest, and needed an unwanted hysterectomy at age 36 — and with that, lost my chance to have more children.

I began to realize that life after my aHUS diagnosis was going to be much more difficult then my medical team let on. I’m easily frustrated that the severity of my disease and potential permanent damage weren’t conveyed to me well. But it’s hard to place blame when dealing with a rare disease. My doctors sometimes barely know more than I do about my disease because it’s so rare.

What symptoms affect me? The exhaustion I feel most days. The cramps I get in my legs, arms, or stomach when I physically do too much. The constant swelling on my left side from developing May-Thurner syndrome, a rare vascular condition. The symptoms of postural orthostatic tachycardia syndrome when I stand too quickly, always feeling cold and unable to regulate my body temperature. The list goes on.

How I coped (and didn’t) amid grief

During my first months out of the hospital, I was so angry and frustrated all the time. Mentally and cognitively, I was fine. But my old self was trapped in this new body that was foreign to me. It’s common for patients to grieve their old lives after diagnosis of a chronic or deadly disease. So much change can be hard to cope with. I just didn’t expect this level of grief.

I can’t take my kids for a hike on a whim. I can’t shop multiple stores without planning for extra rest the following day. I couldn’t stay up into the night remodeling my home. And worst of all, I couldn’t work. I’d built this amazing career in education, and I was too weak to work. Plus, my weekly schedule was full of competing responsibilities: dialysis, chemotherapy, and doctor appointments.

My life was falling apart in front of me. Bills continued to pour in, and bureaucratic red tape kept me in a financial chokehold. I lost my home and my car, which I’d worked so hard for. This disease had taken so much from me — time with my children, my career, my home, and my car. My whole world fell apart, and there was little I could do about it.

It’d be a lie to say I don’t miss my old life. I’m a firm believer that everything happens for a reason, but I miss the old me. I miss healthy me, active me, independent me. I miss our home and car. I miss going out every weekend doing fun stuff with my kids. And these are all losses that will unfortunately never change.

The ocean will always be there and will always present waves small and large, much like grief. You can leave the ocean and go back to the secure land of “real life,” but many of us long for the ocean or vacations at sea. The longing and desire are like remembering what you’re grieving. It’s sad and it hurts to think about, but we still long to go down memory lane, thinking of it and the people of the past. Yet each day, like waves, is a little easier than the day before.

Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.