With Chronic Illness, Death Is Often on My Mind

Lying on the couch, staring at a sliver of the moon out the window, listening to my husband and child playing in the other room, and I’m in a huge flare. Random thoughts are normal since I have a lot of time on my hands lately. But one thought has been pretty dominant in my mind as of now: Death.

Not death as in suicide, death as in the end. To be frank, I’m terrified of it. I still cannot grasp that one day you are gone. Never to come back. Never to feel or love or just, be. I started to wonder why it scared me so much and I started to research what it truly means to die.

To die is to end, for sure, but many believe it is to start a new beginning. Reincarnation and Heaven are prominent in many cultural beliefs. My personal beliefs take me to returning to the earth, the way nature intended.
So upon looking into all of these subcultures, I came across “Death Doulas.” Kind of bizarre since you usually associate doulas with birth, but these instructors hold classes on how to die. They speak of the feelings, the emotions and the experience and give you a perspective on how it will be in your last moments. I am aware that many of us warriors will be in hospice or with our loved ones in the comfort of our own home when it finally is our time, but these incredible people are known to ease us into the place we desire.

The next thing I encountered was “Life Parties.” Celebration of the life of the one passing. Kind of a birthday party for the dying. Many people have done these as fundraising for their families and to help with the cost of funeral expenses. Also it helps to bring peace to the loved ones and to eliminate a lot of time spent meeting with people individually when you don’t have a lot of energy for visiting when your time has come.

With all this being said, I have a little more comfort in the process, but a few things come to mind that really are starting to make me more at ease.
I have systemic lupus erythematosus which can turn and affect my body horrendously at any time. I watched my grandmother, who, by the time I was born, had developed nephrotic lupus, which took her like in her late 50s. That was my first encounter with death. I watched her deteriorating before my eyes. My mom always reminded me of how fragile she was and I always had a special connection to her. Now I see why.

Me being in my late 30s and being diagnosed at 35, I am hoping to surpass that expectancy, especially with modern medicine. But as I said, and as many lupus warriors have seen and been through, it doesn’t always work the way we think.

To eliminate the fear, the wondering, I have kind of come up with some comforting ideas to remind myself that this process is normal, and that I’m doing things right.

1. My family knows how much I love them, and I know how much they love me. We never go a day without talking and never leave without an “I love you.”
2. My family and friends helping me is such a blessing. They are carrying me through life willingly to help ease my tension and mind with all of the ups and downs till the end. I am forever grateful for them.
3. My goal is to carry on good deeds until the end. Be it helping someone with small things or just passing along something positive, that will keep carrying on, and hopefully be able to mark my place in the world as a positive being.
4. No matter all the pain and suffering, loss and tribulations, all of it was worth it in the end. You have purpose on this Earth. You are not being punished, you are meant to go through this, and in the end, you will see what that reason will be.

To all of you going through this pain, and know your end may be soon, know that you are loved, you are amazing, and whichever world you are now entering, you will be where you belong, be it with God or another deity, and you are loved. Fulfill your dreams now, make amends, feel complete, don’t give up. Live the life you deserve and that you want people to remember you for. You are a true warrior.