I have been a grief counselor for well over 10 years. I’ve written all of my academic theses on it. I have a book coming out in the spring about the grief after a breakup. I’ve been quoted as a grief expert in articles and newspapers. I’ve dealt with the grief of being a foster child and knowing my biological mother didn’t want me. The grief of my adoptive parents’ marriage breaking up, moving from my childhood home, getting into relentlessly abusive relationships and leaving an abusive marriage with 3 kids, the deaths of my adoptive parents, finding and then losing (again) my biological mother, dealing with the death of my biological brother, finding and losing and then reconnecting again with my biological brothers. Death, loss, separation… And learning and growing through it all to the point where I believe, to the core of my being, the incredibly healing power of grief and how a loss can actually catapault you to new, incredible heights.

So I know all of that.

But I know that Michael is the most special person I have ever met and that he loves me in a way that no one else ever has and that we are deeply and intimately compatible. Neither of us allow many people in or near us…we’ve both been black sheeps of our families…we were both focused on raising our children and felt we had no time or interest in a long-term relationship when we met….and we identify with each other on an unbelievable level…I truly feel he is my other half even though I’m a healthy, whole person with my own life, my own interests, my own friends and the ability to go off, quite often, on my own.

So anticipating losing him is like no grief I’ve ever known.

Anticipatory grief is difficult on a person. People who have suddenly lost a loved one often think that anticipatory grief is easier than facing a sudden loss of a person. They say well, you have time to prepare; time to brace yourself.

But there’s so much more to it than that.

It is hard to watch the person you love, with your whole heart, wrestle with a terminal illness. I tell Michael everything. What I haven’t told him is how sick he is. He has never been sick a day that I’ve known him. He often told me that he would go away and no one would find him if he ever thought he was terminally ill because he would want to spare people from seeing him like that.

It is not easy for such a proud and independent person to be sick. When he was in Neuro ICU he had trouble feeding himself and when one of the kids would try to help him he would get angry. When we were alone he said, “I don’t want the kids helping me. I should be helping them. That is my job. It’s not their job to take care of me.”

For now he thinks he can beat it. There might be a time down the road when he knows he’s not, but for now he thinks he can beat it. With most of the radiation and chemotherapy in front of us than behind, I want him to believe that.

He hates being sick, he hates all the pills, he hates being weak and having no energy. I know he is begrudgingly going through all of it for our sake. If he thought it was pointless, I’m not sure he would. So I keep the prognosis away from him.

Anticipatory grief is like a heavy coat that you wear. You can’t ever really get comfortable. There’s no position that works. When I am just sitting and being with him I feel as if I’m denying the reality. Sometimes when I sit with him I am enjoying myself, and him, and then “the prognosis” hits me and my mind wails: “PLEASE DON’T LEAVE ME!!!” while I’m sitting with him stroking his hand and smiling. It’s a strange and stressful dichotomy.

Therese Rando wrote that one of the problems of anticipatory grief is “contending with aspects of chronicity: an uncertain, up and down course; confusion magnified by situations breeding inconsistency, resentment and ambivalance; lack of norms and clearly specified expectations and responsibilities; and depletion secondary to demands for major readptation and investment of self, time, and finances.”

For me, normalcy has flown the coop. This was the time we had looked forward to for a few years now. My book is being published. It’s been written and will be out in the spring. I just founded a production company. Our youngest is a sophomore in high school. We were starting to plan our “after all the kids are out of the house” life. There was so much more to come. Our time.

Now we are in a strange holding pattern. For me the future is completely uncertain. And I feel we both worked hard and have been generous and caring toward our family, the five children and the grandchildren…this is supposed to be our time. This is what I have looked forward to for a long time…and it’s being taken from me. And I hate it.

I resent the medical stuff…and think I am not good at it…but I am trying. I am a lawyer and don’t like anything medical. I’m not nurse like in temperment or ability. But I work hard to keep Michael comfortable, to make sure he gets his meds on time, to not get angry when his tumor makes him forgetful or combative. I would walk over hot coals for him and he would do the same for me. But I wouldn’t like it and having to face that walk every day is difficult.

I cry for the memories, I cry for the present and my future that looms large without him.

Anticipatory grief greets me every morning when we get up, every time Michael laughs, every time he smiles or winks at me, every time he brags about me to a nurse, every time one of the kids ask what is going on, every time I feel angry at him and his disease, every night when we go to bed and I reach across to pat him and he is too tired and sleepy to pat back. Anticipatory grief is the horror show I live each day.

And I hate it.