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So You're Going to Live: Facing Life after Facing Death

Spirituality Column #18

November 1996

" ... free those who all their lives were held in slavery by the fear of death." -- Hebrews 2:15

Are you one of the many persons living with HIV who are undergoing a profound change in your condition and your life expectancy? Do you care for someone going through this? With the new "cocktail" therapies, many who once were "terminally ill" are now looking at the prospect of living a long and healthy life span. This is an answered prayer! It is hope realized for those who can afford, access, and tolerate the treatments.

But many people have mixed feelings about their new hope of living long and well with HIV. This is a surprise to many who experience it, and to those who love them.

There's an expectation that people in this situation should be relieved, grateful, and joyful. While many do feel this way, the reality for some who are suddenly facing life after facing death is a deep depression, profound anxiety, or simply fear.

If you're in this situation and feeling this way, you're not alone!

There are any number of persons living with HIV/AIDS who, believing their life span was about to be cut short, sold their life insurance, quit their jobs, went on disability, maxed out their credit cards, and made their "final arrangements." The prospect of turning all this around, and getting back into life can be quite overwhelming, and can have a strong emotional impact. Some people, in realizing they are going to survive, are amazed at how much they had grown to accept their imminent death.

Having faced the prospect of dying from AIDS, Kaposi's Sarcoma and lymphoma back in the early 1980's, I can relate to these feelings. My KS and lymphoma went into remission in 1985, and I started really getting well in 1986. (For more details on my story, see Column #1: "Why I Have Hope.")

In spite of the joy I felt, the prospect of recovering was pretty frightening!

I was pretty well prepared to die: after all, back then there were no treatments, and everyone I knew died from AIDS within a year or two. I made my final arrangements, traveled around the country saying goodbye to dear friends and family, and bought a few things I'd always wanted and never felt I could afford.

I remember actively letting go of life. I accepted my growing dependency on those who were doing my shopping, cooking, and housecleaning. I let go of career plans and ambitions. I even felt somewhat relieved that I would never have to face the challenges of aging. I certainly stopped worrying about investing in a retirement fund.

Then I got well. And while there were times I felt euphoric and blessed, there were many times when I felt overwhelmed and depressed about the huge changes that were happening in my life.

I became depressed by what getting well again would mean. I suddenly had to do my own shopping, cooking, and housekeeping again. I had to get my career jump-started after 4 years of unemployment. I went through "survivor's guilt",wondering why I was spared when so many others died. To top it off, some people were actually angry with me, as if they'd done all their anticipatory grief work for nothing!

It took a full year before I pulled out of the depression. It took me even longer to trust that I was going to live, that there wasn't a time bomb inside me ready to explode. Recently, with the promise of the new treatments, I've decided I can trust my wellness, and I've started a retirement fund!

A common question these days is, "OK, I'm going to live... now what do I do?" Here are ten suggested steps, based on my own experience of surviving AIDS.

  1. Be grateful.

    Psalm 30: 2-4

    2 O Yahweh my God, I cried to you for help, and you have healed me.

    3 O God, you raised my soul from among the dead, and restored me to life from among those gone down to the Pit.

    4 Sing praises to Yahweh, all who are faithful, and give thanks to God's holy name.

    Give God thanks and praise! Celebrate life! Remind yourself every day that you're going to live, and that this is not only a good thing, it's a miracle. You are God's precious creation, and you deserve to live. Make a habit of daily counting all the good that has happened in your life. Don't just pray when you need help, but give God thanks and praise daily for all your blessings. After all, you're going to live! You've got a lot to be grateful for. God is a God of life.

  2. Take required medications with discipline. Don't stop!

    1 Peter 1:13 -- Therefore prepare your minds for action; discipline yourselves.

    Many of the current medications require strict compliance. Your survival may depend on how well you are able to follow your physician's directions. If you stop taking one or more of your medications, that may stop the effectiveness of all the antivirals and protease inhibitors. Make sure you learn all the facts about your medication from your health care provider or pharmacist.

    And just because you're feeling well, doesn't mean you don't need the medications anymore! It may very well be these treatments are the reason why you are feeling so well. If you go off the medications, complications can be very serious.

  3. Reach out for help!

    Psalm 121: - I lift up my eyes to the hills from where will my help come?
    My help comes from Yahweh, who created heaven and earth.

    First realize and acknowledge that it isn't easy making the transition from chronically ill to chronically alive! Don't be afraid to ask for help. There are many trained counselors, clergy, and therapists who are helping countless people through this transition. There are many issues to sort through, many challenges to confront. You don't have to be alone in getting your life back in order.

    And don't forget that God is with you through all of this, and can always be trusted with any concerns or problems you may have. After giving God thanks and praise, it's good simply to ask God for help through the next day. God will always be there with you.

  4. Continue taking good care of yourself.

    1 Corinthians 6:19 -- Your body is a temple.

    Ephesians 5:29 -- No one hates their own body, but nourishes and tenderly cares for it.

    Even though you may be feeling well now, your body needs more than ever to be "nourished and tenderly cared for". You may have been through a number of battles with HIV, and your body may be recovering for quite some time yet. Good nutrition, exercise, massage, whatever you can do to make your body feel loved and well-cared-for is more important than ever.

    It's important to keep doing the work of healing, even after you feel well. There's always more to heal, and we can create the conditions for God's healing power to continue to work in our bodies and souls.

  5. Get back to work.

    1 Thessalonians 5:12-13 -- We appeal to you, sisters and brothers, to respect those who labor, ... hold them in loving high esteem because of their work.

    You may have been unemployed for one reason or another while living with HIV, and now you're finally getting well enough to hold down a full-time job. Some people can't wait to get back to work. But for others it may be difficult to give up the unemployed lifestyle. There are decided benefits to working. It can do wonders for self-esteem. It feels good to work, to feel purposeful, to earn one's own way.

    If you're thinking, "not in my line of work", then this may be a good time to pursue that alternative career you always wondered about. Seek out employment, vocational, or career counseling.

    There is value in working.

  6. Resolve financial problems.

    1 Timothy 5:18 - The laborer deserves to be paid.

    Hebrews 6:11 - 12: And we want each one of you to show the same diligence so as to realize the full assurance of hope to the very end.

    Some people may let their financial house get out of order when they're chronically ill, thinking "what's the point of even balancing the check book?" Now that you're going to live, it might be time to clear up any financial problems.

    A number of people have accumulated too much debt. If you're in this situation, take one step at a time in resolving debts. If you're having trouble with your debts, find a reputable financial counselor or a debt manager. Such a person will be able help you plan how to resolve your debts.

    Start a retirement fund. Start saving money. If you have viaticated your life insurance, you know how valuable financial assets can be in an emergency. It's time now to create new assets.

  7. Make plans for the future.

    Proverbs 23:18 - Surely you have a future, and your hope will not be cut off.

    Jeremiah 29:11 - For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.

    It's not only important to make plans for your financial future, it's important to make plans to enjoy life. Live your dreams! Many of us who have faced death had a long list of "If only's": ("If only I'd seen Tahiti," or "If only I had been kinder" etc.) Now you have time to make those "if only's" come true! You've got that second chance!

  8. Deal with your fear of aging.

    1 Chronicles 29:28 -- David died in a good old age.

    Psalm 92:14-15: In old age, the righteous still produce fruit.

    Isaiah 46:4 -- Even to your old age I will carry you.

    In Biblical times, heroes like David were said to die "in a good old age". This was a sign of their heroic status. People respected those who had lived many years.

    Today, in some cultures great value is put on youth, to the detriment of older people. A number of people fear growing old, because of what it can imply: losing some of our physical abilities, or our youthful attractiveness, for example.

    But consider the alternative. There are countless numbers who would have given anything to grow old, but they died before combination treatments made HIV more manageable. You have the chance to see what's around the corner yet.

    Get to know some older people. Find out how much there is to love and respect in them. Learn to see the beauty in wrinkles or white hair! Make friends with seniors. Find out for yourself what the positive sides of growing old can be. Consider it an investment in your own senior years.

  9. Incorporate the lessons of dying into living.

    Psalm 89:48- Who can live and never see death?

    2 Corinthians 4:11- For while we live, we are always being given up to death for Jesus' sake, so that the life of Jesus may be made visible in our mortal flesh.

    Live what you learned when you thought your time was short. For example, many of us, in living with the potential imminence of death from AIDS, learned to be truly present to the present moment. Remember, death can still happen at any minute.

    None of us, HIV-positive or not, have any guarantees that we will be alive tomorrow. Facing death can snap you to attention, and make you understand and embrace the importance of staying in the moment. Don't lose that gift now that you're going to live. This is just one of the valuable lessons that can be applied to your new life.

  10. Don't get frustrated if everything doesn't fall back into place in a moment.

    James 5:11 Indeed we call blessed those who showed endurance. You have heard of the endurance of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.

    If you've been sick with HIV, the physical turn-around can happen fairly quickly with the new combination treatments. But the emotional, spiritual and practical adjustments can take awhile. And some physical symptoms may take longer to resolve than others. You may have been through several big battles due to HIV, and you may feel fatigue from the fight. Many of us want it back the way it was before HIV with simply the wave of a fairy wand!

    First of all, life will never be the same for those of us who are now living through HIV and AIDS. We've lost too many good people before the advances were made; we have too much accumulated grief.

    Those of us living with HIV will always have to pay special attention to our medical needs. Even though we've experienced healing, we haven't been cured. Nevertheless, by the grace of God, and the miracles of modern medicine, many of us will live with HIV well into our senior years, if we are diligent in caring for ourselves. Our experiences with HIV and AIDS have hopefully taught us and helped us grow.

    Secondly, true healing can take a long time. It doesn't all happen at once, with the snap of your fingers. The timing is in God's hands, not ours. In any one day, we can do a lot towards finding a job, or getting our finances in order, or taking good care of our bodies, but at the end of the day, there may not be anything more you can do until tomorrow. At that point, we can give it to God, and trust in God's compassion. God loves us and is doing everything possible to help us, to strengthen us, and to continue to heal us.

Colossians 1:11-12: May you be made strong with all the strength that comes from God's glorious power, and may you be prepared to endure everything with patience, while joyfully giving thanks to our Creator, who has enabled you to share in the inheritance of the saints in the light.

[Scriptural quotations are paraphrased by Rev. Pieters, based upon comparison of several translations.]

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