ITP, MDS, AML
There is something forbidding about these acronyms. When you expand them to their full length they become even more threatening.
IDP Idiopathic thrombocytopenic purpura
MDS Myelodysplastic syndrome
AML. Acute myeloid leukemia
These alphabet letters revealed nothing to the layman; at the same time they tell you clearly and forcefully that it is the white coats who hold the power.
The cancer doctors wield strange and dangerous tools, tools which require boldness, tools that require subtlety, tools that concentrate for the most part on the body and not on the collateral damage to the mind and spirit.
Both the caregiver and the patient must find their own way. And as the patient is fully absorbed in the shock and the harsh remedies, it often falls to the caregiver to provide mechanisms and strategies for coping….and hopefully for ultimately thriving.
Meanwhile, a simple translation: MDS and AML equals blood cancer.
The caregiver enters this alternate reality with the patient. This new alternative world involves separation, as it drives a wedge between you and your closest and most loving relationships.
I have a reputation of being strong, and I am. But people then forget that no matter how strong you are, you are still human, still the mother, and you also need periodic TLC.
You are a caregiver not a saint.
To overcome the suffering of isolation is to recognize that you are not alone. Otherwise it will be difficult to leave the feedback loop….
suffering bringing isolation and the sense of isolation increasing the suffering.
Important to remember that there are others sharing this care givers journey with you — professionals and friends and family members and fellow travelers. Although they can’t possibly walk in your shoes, your loved ones are experiencing their own sorrow, their own separation and isolation.
To cope with isolation and estrangement, both the caregiver and the patient need to:
REACH OUT
Even if it is clumsy. Even if it is misdirected. You will find your way. Maybe you can’t find comfort easily, maybe the words of others ring hollow. But the hugs, the visits and chicken soup do not ring hollow, and this effort, this connected effort to a larger community, will bring reward.
REACH IN
Connect to your stable inner core. I myself use MediSounds Meditation, a technique I created years ago and now teach to others, which involves listening to specific vocal sounds that produce a calming centering effect that can lead to an inner experience of a supportive, embracing and profoundly comforting reality.
