I'm HIV Positive and Preparing to Outlive My Partner, Again

30 years ago, my partner died in the middle of the night, blind and unable to speak. It ended a 2 year battle that turned his skin blue from fungal infections, his eyes white from CMV, and his brain into mush from seven horrific lesions.

The days after his death blurred from grief to anger and then resolve. I was determined to move on.

I delivered the eulogy at his memorial, cleaned our apartment and gave his possessions to his mother, started a new job, found new friends, and walked away from the activism that had fueled my life for the previous decade.

It took years for me to come to terms with the tragedy we had lived through. The lessons from that time are not always fresh in my mind, but they are still there.

And that’s a good thing because it’s all getting ready to happen again.

Today, I am taking care of my husband

A few years ago, my husband was diagnosed with stage 4 colon cancer. The tumor was removed, and he has endured multiple rounds of chemo, surgeries, and radiation.

He’s in as good of health as he can be, but it’s now a chronic condition and will eventually kill him.

Finding each other gave me hope

After my first partner died, I was lucky to benefit from the arrival of Protease inhibitors. They brought the promise of turning HIV into a manageable disease.

And with that hope, my days turned into months and years, and eventually I found love again with someone who accepted my HIV status while being negative himself.

I constantly remind myself that anything is possible when it comes to living with a chronic illness. But a part of me is also bracing for the inevitable. I know there are tasks to complete and final wishes to honor.

But right now I’m preparing in other ways, too.

To show up for him, I have to show up for myself first

It starts with me. I cannot be there for him if I am not there for myself. I’m human, not a machine that can power through all of this without consequence.

So, I’m starting with:

• Acceptance of this situation
• The potential outcome, and...
• The importance of my well-being

Being truthful about my feelings and health is essential to being the person I want to be as I travel this path.

I didn’t do that so well when my partner fell sick, and it has left me with regret and grief over how I handled myself as things became difficult.

I didn’t have the strength to face the challenges because I never allowed myself to admit that I needed to stop and recharge.

I set reasonable expectations for myself

This means setting reasonable expectations for exercise, diet, and rest. And I’m building a network of support with friends, mental health providers, my doctors, and spiritual advisors so that when the time comes, I will not face this burden alone.

Trying to be the best partner I can be

“What does he need?” is the most powerful non-verbal question I can ask.

Paying attention to how he is acting and feeling. Knowing his schedule, routines, and noticing when they change. I strive to be as aware of what he isn't telling me as what he is.

It’s also important to ask him questions, but I need to balance that with knowing when to ask. 2 days after chemo is not the time. Knowing his capacity to engage can set the tone for all our discussions, whether it’s his final wishes or what he wants for supper.

We're a team

This is where I once thought "this isn’t about me." But we are together in this - it’s impossible for his needs to not involve me. I’m the one who has to be there. So really, it’s about us.

And yet, we make plans for our future together

It’s easy to let his prognosis dominate our thoughts and planning, but doing that would take so much potential away from us. Looking into the future with hope is a key part of living.

We are still talking about retirement and making sure our papers and affairs are in order. But we also discuss what we want to do together tomorrow and next week.

Where would we like to go next year?
What movies do we want to see when they come out?

This is a challenge for me because I fear expecting too much and being disappointed. But by making plans, we keep our eyes on the reason we came together in the first place.

We enjoy each other's company, and even in the darkest times, we have to celebrate that.

Outliving my partner while living with HIV

In my partner's final months, I learn not to drift too far from the moments we are in. Life happens fast, and if you aren’t paying attention, you will miss the small things that give meaning.

When I find him sitting on the porch, I try to spend a few minutes with him, no matter how tired I am. If he wants to sit quietly on the couch laughing at videos, I do the same. I stop and point out things I am interested in, so he knows what I enjoy and we share that moment together.

Decades ago, my partner's death showed me that being present isn’t going to stop the feelings of guilt and regret that come after they are gone. But being engaged can help heal the wounds, with time and the memories you carry.

The possibility of outliving someone when you are HIV positive is daunting.

But I know I’m up for that challenge, because in the meantime, the two of us will be out, living.