Alone, Together . . .

My life experience has continually reminded me that life is a journey we take alone. (Not just death.)

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My Mom died when I was six so I’ve never taken relationships for granted. 

I’ve always had friends – even people I consider amazing friends – and yet mostly felt quite alone.

Home hemodialysis has been another reminder of my lone travel.

On one hand I understand the oneness of the human existence. I understand my union with God. It’s just, my time in this realm, as a spirit in a human body, that I find lonely.

My journey has been from medical crisis to crisis. Moment after moment where I have to soldier through – alone in this skin – fighting the good fight.

I’m not asking for pity here . . . I’m simply reflecting on what I’ve experienced.

I am at home doing dialysis without a care-partner.

Most people do dialysis with another person who also knows how everything works and who they can rely on. Split the burden in half. Shoulder some of the responsibility.

Having a care-partner was not an option for me.

I am a working-age, single woman.

I never asked the two possible candidates who could have been my care-partner. My ex-boyfriend and my father.

My Dad has suffered a lot of loss in his life. Losing his wife. Losing his child – my brother. I could not burden him with the care of his only remaining child in a routine that would have completely drained him. To make matters worse I look a lot like my Mom and so I know in seeing me sick he has to relive some difficult memories of her sickness and passing. 

My ex, who I still love deeply, already carried the burden of having saved my life. The night I had the cardiac arrest he woke up, noticed I wasn’t breathing and began CPR. Him and my Aunt are the only reason I am still alive. That is a heavy burden for anyone to carry. I know that my health was a lot for him at times during our relationship. I knew the cardiac arrest was a very traumatic experience to have. It felt like too much to then ask him to learn dialysis and make a commitment to be by my side five days a week while I do it. (And he works full time and has kids.) It felt like far too much to ask.

Not sure if it’s normal or not but I couldn’t ask ANYONE to accompany me on this dialysis journey. It feels like to much to ask anyone.

I am jealous sometimes to think that other people can say, “I’m exhausted. Just get me through this one.” And their care-partner (hopefully tenderly and with no resentment) helps them through that dialysis session. On those days, when I am overwhelmed/tired/frustrated I put on my “big girl panties” and just get my ass on the machine.

Sometimes I literally pray for patience and strength to get on the machine. My personal, “Groundhog Day” movie!

Do the tests.

Clean it.

Set it up (30 to 45 minutes).

Sometimes, at the best of this ordeal, I walk into my dialysis room and literally find myself hooked up. Everything done. The tedious moment passed in a quick and almost effortless manner. That is a good day. 🙂

But every time I must make it to the room.

The walk into my dialysis room has come to feel like how I’d imagine the walk to solitary confinement. A surrendering to the police. A small four hour death.

Yes, friends do come and visit me. But they all get to leave – healthy and untethered.

I wish this treatment was a choice. Something I did for vanity. I would walk away from it. Resign to living with having wrinkles or bad hair. Unfortunately it is not. It would only take a few days away from doing dialysis before I would be deathly ill and risk dying.

I want everyone to know before I continue . . . this post is not a cry for help. A cry for pity. Please don’t write and ask if I’m suicidal or anything. It is not the case. I am being honest here.

I want to share my story so people know what it’s like for me. It’s just an offering of my perspective.

Ultimately I am a fighter.

I will continue to follow this regiment and do these treatments until I get another kidney. 

I understand how I am setting myself up for SUCCESS with my next transplant by doing this much dialysis and sticking to my gym schedule.

I have such a feeling of overwhelming optimism when I think about the next chapter of my life.

Being well.

Continuing to pursue my writing, advocacy and professional patient goals.

Getting married one day.

Traveling and seeing the world.

Enjoying the precious moments that having a transplant will give me.

I would never quit now.

I am too close to the prize. It would make all of my effort so far be in vain. I couldn’t take that. I HAVE WORKED TOO HARD.

In the meantime, remember to say a prayer for all of us struggling with our challenges. I will say a prayer too because I know ALL OF US are fighting our battles.

In that way I know we are united. We’re are not alone. I know we are ONE.

19 minutes left on the machine tonight. Thanks for helping me pass the time.

I appreciate you being here.

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4 Responses to Alone, Together . . .

  1. Tammy says:

    Thank you for sharing Karen. I think this is a beautifully honest perspective to show those who are care-partners to help them understand how it must feel….your words opened my eyes for sure….showed me a little why perhaps my Dad has fought to push everyone away, to do it all alone, and yet as each step comes and goes, you can see he is grateful he’s not. Care partners can feel frustrated at times, not for what they are needed to do, which is often done from the heart, but because they can be pushed away but your article sheds a light that many don’t share with their care partner….your words teach compassion. I know you hear this all the time, and I know what it’s like to hear something, want to believe, maybe even actually believe it in bouts, but still feel otherwise, but I still want to say it to you because it’s how I feel – You ARE an inspiration, not a burden. Keep writing Karen, the world needs your words.

    • kns544 says:

      Thanks, Tammy. I am so touched that my experience could make you understand your Dad better. That never occurred to me. Further evidence of our oneness. 🙂

  2. Chris says:

    I love you Karen Such a strong inspiration to us all

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