How?

 

Getting through the impossible moments when you are faced with life-altering severe illness, demands a high degree of self-reflection, honesty and understanding.

For the last thirty years my wife and I have had to live within a context of unimaginable, endless physical torment and multiple hypersensitivities with no cure, no standard treatment pathway, no way to physically alleviate her intense, ongoing suffering.

Learning how to care and learning how to live, then, has had to be our focus. Much more than just seeking to survive or cope, we want to grow together and live our marriage to the fullest possible extent.

Individually different, the challenges we face are jointly the same.

How can we stay connected, loving, flowing in this agonising, intolerable situation that we find ourselves in, not just for a minute, not just for a day, week, month or even a year, but instead, for ever?

That is overwhelming unless you take it a moment at a time.

The challenges I face as a husband, go way beyond learning “how to care” for my wife, rather they are about how to live a whole "caring" life.

Within the shifting realities of an illness, which at the drop of a hat, literally rips away from her all and any ability and forces her into a tortured, paralysed existence, the challenge for my wife is how to be her self.

How do you maintain motivation, enthusiasm, direction, hope in this situation?

How do you stay skilled, up to date, endlessly creative in your approach and shared time together ?

How do you grow as a couple, not just as a carer and person needing care, how do you live your marriage?

Particularly, how, despite everything taken away, do yo