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Twelve years ago, my husband started having a myriad of strange and bizarre physical symptoms that were very disturbing. He initially started falling and losing his balance. He was having dizziness and difficulty walking. He was not able to exercise due to lightheadedness and fatigue. He was having sleep disturbances where he would act out his dreams vividly. He was having intermittent slurred speech and losing the ability to project his voice. His cognition and concentration were impaired as the once vibrant multi-tasking Vice President of a large biomedical company was experiencing mental fogginess and executive function difficulties. Making it through the day became for him like running multiple marathons.
It started a seven year journey to see over twenty Doctors at six different medical institutions in the country. Finally after what seemed like an eternity of progressively disabling symptoms that were slowly taking every aspect of his life physically, mentally, emotionally, and spiritually, he was diagnosed with a very rare neurodegenerative disease called Multiple System Atrophy. There is no known cure, no known treatment and life expectancy from the time of diagnosis to death is 5-7 years. In the interim, he has been slowly debilitated to being in a wheelchair full time as he can no longer walk. He is slowly losing the ability to eat, swallow, and breathe. This disease has changed everything in our worlds. It has catapulted us into the mystery of a dark night of the soul like nothing that we have ever experienced.
My husband is dying a slow degenerative death and the worst is yet to come. Physically, he is going to decline to the point of being completely incapacitated. Mentally, he is having cognitive changes from this rare brain disease that is destroying his ability to communicate and process. Physically, he is becoming completely dependent on everyone around him for taking care of his every need. Vocationally, he hasn’t worked in 8 years and this disease has put intense pressure on our every financial resource. There is not one aspect of our life that hasn’t been touched by this dreaded disease.
There are some things I have learned in living and caring for one with a long term illness.
1. Speak
“Telling your story often and in detail is primal to the grieving process… grief must be witnessed to be healed.” I have had many opportunities to tell my story and each time there is a new healing and release that comes that in some small way feels like the disease is not winning. Whether it be in a support group, meeting a friend for coffee or intentionally getting support through counseling/coaching, it is essential to have a safe place to tell your story- over and over and over again.
2. Hope
In the midst of your grief, you will work through the stages of grieving- even the anticipatory grieving - the loss ahead as your disease cycles through long term illness. The diseases feels like it robs you of your dignity as a human being- seeking to diminish you on multiple levels. Recognizing and experiencing the cyclical stages of grief is essential:
denial- numbness-meaningless-overwhelming-Life makes no sense
anger- the front line of sadness, panic, hurt, fear- PAIN
bargaining- control, how do I get out of this
depression-deep grief over our losses
acceptance- the new norm that we learn to live with- reintegration of purpose and meaning in the midst of the disease’s progression.
You can live a life with a newfound Hope while enduring the depths of your suffering. The way out is the way through.
3. Never Give Up
Etty Hillesum- was a woman who was imprisoned during the Holocaust. Her writings were found: her entry for July 3, 1942, 4 months before her death as German occupation was intensifying-
“I must admit a new insight in my life and find a place for it: what is at stake is our impending destruction and annihilation…. They are out to destroy us completely, we must accept that and go on from there…. Very well then … I accept it…. I work and continue to live with the same conviction and I find life meaningful…. 1 wish I could live for a long time so that one day I may know how to explain it, and if I am not granted that wish, well, then somebody else will perhaps do it, carry on from where my life has been cut short. And that is why I must try to live a good and faithful life to my last breath; so that those who come after me do not have to start all over again.”
For Etty, this affirmation of the value and meaning of life in the face of overwhelming evidence to the contrary became her guiding principle. In the midst of suffering and injustice, she believed, the effort to preserve in one’s heart a spirit of love and forgiveness was the greatest task that any person could perform. This, she felt, was her vocation.
Are you willing to be willing to let go of your pain and suffering? Do you want to live a valiant story even in the midst of your ongoing disease? Are you willing to not be consumed by the illnesses diminishment that seeks to envelop your life? Tell your story, hold onto hope and never give up.
As a health coach, I will walk with you in your journey of suffering and honor all that you are going through as one who knows. I am a Registered Nurse so I bring a great deal of medical knowledge to navigating these tremendously challenging medical diseases. There is deep emotional and mental trauma that takes place as you navigate a devastating illness. You have a purpose as a human being - even in the midst of this devastating illness that feels like it will swallow you whole. Your life matters. Your words matter. Your suffering matters. Your pain matters. You matter.
About the author:
Bev is a Registered Nurse, Health Coach, and Riso-Hudson Certified Enneagram Teacher through the Enneagram Institute. She's also a professional member of the International Enneagram Association.
Read more about Bev's coaching
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