November 30, 2016 by Pastor IngramSo here’s the thing: I am a *Long Term Survivor Living with HIV. 28 years give or take a few. It has not been easy, and it is becoming increasingly more challenging as the years go by. By no means am I the only one, either! There are quite a few of us LTS. We have weathered the storm, and we continue to weather the storm. A much different storm than those diagnosed within the last decade or so.Now when it comes to HIV, and the medications that are now available; folks with HIV are living longer, and there is even medication for folks at risk to take to help prevent contracting the disease, called PrEP.I remember years past, that every World AIDS Day, on December 1st, you had events all over the place. You could pick and choose events to go to. Folks wore their red ribbons, in honor of someone passed away or in recognition of the day. Services were held in houses of worship. People came together to recognize World AIDS Day. Not so much anymore.Let me be a little more specific: there are fundraisers going on. That is good. There are events going on in certain demographics. But here in Philly? Not so much.Yes, there are prayer breakfasts. But that doesn’t necessarily feed my spirit. I’m just being honest. Prayer is good, but then what????I feel like the focus has been taken off this disease and how insidious it can be, how insidious it is. We are still living in a crisis. I speak for myself, because it is personal for me.There are faith based organizations and church websites who espouse the ministry of HIV/AIDS…and that is really all it is. Oh! some are good at ministering to those outside of this country, but we…ahem…I need help right here. Where are the congregations recognizing World AIDS Day….in Philadelphia? I am sure there are some…I am probably just out of the loop.I want to go to a church for World AIDS Day. I want to know that in the faith community, HIV is still an important issue. There are people out here that need to feel they are loved by God.I want to be with others like myself. I don’t want others talking for me, who have no idea what it means to be living with this disease, much less what it means and how it feels to be a long term survivor.What is your faith community doing this World AIDS Day, besides talking the talk?Prayers and Promises, Promises and Prayers….We need you to walk the walk with us…We need you to keep the promise.#LongTermSurvivor#WAD2016#HIV#KeepThePromise
November 30, 2016 by Pastor Ingram
I have been absent for a while. Been dealing with quite a few things. I thought I would share with you a few thoughts as we approach another World AIDS Day (without a cure).
As World AIDS Day approaches, I am daily recognizing the blessing of life, and family and friends. I am recognizing always those in this struggle who have gone on before me, those who will come after me and those in the trenches with me right now. I am especially thankful and prayerful for those of us who are long-term survivors.
It has been a difficult and challenging year for me. It has been an amazing year for me. Lots of grief, lots of stress and lots of blessings.
I am still undetectable.
Beginning in February 19, 2016, I went to the emergency room for what I thought was a sinus infection, which ended with me being hospitalized for five days. I was diagnosed with severe heart failure. In fact, I was asked, “When did you have the heart attack?” Danged if I knew! I am and have always been like the “Energizer Bunny” — running hither and thither. My ejection fraction (how well my heart was pumping blood throughout my body) was at 15%, and they couldn’t understand how I was functioning so well. They finally said that my body just “compensated.” But now, once the diagnosis was in, it seemed as though my body said “enough.” I was not released from the hospital until I received a “life vest”: a vest worn under the clothes 24/7 with paddles on the back, a defibrillator used to deliver a shock in case I dropped to the floor.
Going home, I was placed on home care with a visiting nurse twice a week.
I was referred to UPenn Hospital, where I began a series of visits and tests. For almost three months, I wore the vest. HIV took a back burner throughout this period, even though I kept up with my meds. During this time, dialogue began about a bi-ventricular ICD (pacemaker/defibrillator) being placed inside my chest to keep me alive. I underwent my first surgery April 26. The device was implanted with one major hitch: The third lead, which was responsible for pacing the heart, was not able to slide into the bottom left chamber, and so was left undone. I only had the defibrillator working. I had to wait for a specialist to open me up again and sew in the third lead. June 3, I had the second surgery, and the specialist found an acceptable spot and sewed the lead onto my heart.
I am still healing, still recovering, still alive!
It happened so fast, I really didn’t have time to process it all … had to just do what was necessary. From February to June — going through all the motions. I am just really internalizing how dire my situation was. I was almost dead.
And yet, my virus remained undetectable.
Just as I began really recovering and being able to climb the stairs without stopping, I was hit with pneumonia. Won’t go into all the details about that, but will say this: On Thursday at my HIV visit, my lungs were clear and, by Saturday, I was in the ER, hardly able to breathe without pain. I am much better now.
And my HIV viral load is still undetectable.
I am grateful to be here, make no mistake about it. But I can’t help but wonder if the longevity of my HIV status has had an effect on my heart. There are studies out there about the correlation between HIV and heart disease. HIV certainly is a risk factor in heart disease. Since HIV attacks the body’s immune system, patients are vulnerable to infections that may spread to the heart and cause disease.
It’s important to not only check on your numbers as far as HIV goes, but also to check your heart function, as well as other organ functions. One never knows where the HIV disease is gonna attack. It’s important to stop smoking, develop healthy eating habits, exercise and get sufficient rest. It’s important to self-care! For so long, many black women (whom heart disease affects the most) have had to be that “Energizer Bunny” … we keep going, and going, and going. It’s that survival mode we have had to be in all of our lives and our ancestors’ lives. A while back, my HIV doctor said to me: “HIV is not gonna take you out of here; it will more than likely be heart disease.”
I am, at this writing, recovering from pneumonia. Sigh …
It really put me in touch with my husband’s death. My husband died from pneumocystis pneumonia, commonly referred to as PCP. I remembered him, in denial: no meds and feeling so ashamed. I remember him getting sick in his apartment, with him shivering and coughing and refusing to call an ambulance. I had to call the ambulance for him. While it was a different type of pneumonia, I can imagine the thoughts going through his head: the fear, the rejection, the resignation of dying alone in his apartment. I was in touch with that this week. And it makes me so sad — for him, for me, and especially for those out there who are not doing what they need to do. For those out there who have not been tested, who are living in silence and shame.
And yet … I am undetectable.
I am also a long-term survivor with this disease.
Some congratulate, some honor our status, some boast: I’m undetectable!!!
And then there are some, like me, who are tired of writing these blurbs as another World AIDS Day approaches. But at the same time, we need to have our voices heard: “We’re here!” and “We are tired!”
Now mind you, I don’t want to die! A few things to accomplish yet. I also know that there are others out there who have been living much longer than I have with this disease, and I watch and hear how they struggle. There are so many others who have been on the front lines of this disease before there was anything called a World AIDS Day.
While I am grateful for my life, grateful for my survival instinct and my perseverance and/or stubbornness, I am of the opinion that so much more can be done.
Have we become complacent with the advent of so many different medications? What are they doing to our organs?
We demand a cure, and we demand that more be done for the eradication of this disease. We demand an end to the stigma propagated by lack of education. We demand safe places in houses of worship; demand that the focus be on our salvation through the redeeming death of Christ Jesus, not who our partners are. We demand full participation, not just lip service on a website. We demand medication for those in areas/countries where medication is not available. We demand in the fullness of our humanity, the fullness and inclusivity of the members of the body of Christ. We demand a place at the table.
Too many things are decided and talked about us, in some places with well-meaning people who really do not have a clue. “Nothing about us, without us” — is what I’ve heard.
We are tired of platitudes and scriptures and slogans and folks who really do not understand the depth of what this disease does to our bodies and our spirits.
On this 28th World AIDS Day remembrance: I implore you to remember the very first year of World AIDS Day. Remember someone you have lost to this disease. I implore you to get tested if you have not done so. I beg of you to get medication if you need it. Check out PrEP (pre-exposure prophylaxis) — when people at high risk for HIV take HIV medicines daily to lower their chances of getting infected. Get out there and demand more studies be done; there IS a cure out there! Make some noise! Be a buddy, be a friend to someone you know who has the virus. Be safe with yourself and your partner.
World AIDS Day 2016 is fast upon us … what will you do? What can you do?
Things will be getting kinda hectic in this current political climate. Do something!
Oh! Did I tell you I’m undetectable? Whooo Rahhh!!!!
May 21, 2016 by Pastor Ingram
Again, I give thanks for the voice of Sean McKenna. I give thanks for the voices of ALL Long Term Survivors. Please read. Please share. Please care. The virus may use up our bodies, but WE are not used up.
Scroll down, this isn’t just me babbling.
This isn’t 1982.
This is March 2016.
This is a man who fought to the end and was built like tank a year ago but was a Long Term Survivor.
This is why I occasionally wake up crying.
May he Rest in Peace and get the respect he deserved on earth, while in heaven.
May the people here on earth remember that we are still dying.
May the people here on earth see this, and realize, that Long Term Survivors should, and can, share the political agenda with Trans, PrEP and HIV criminalization issues without detracting from any of them. We should not be ignored.
January 5, 2016 by Pastor Ingram
Sean McKenna is my featured Guest Blogger this month. I was moved by something I read on his FB page. His is an important message for us all! Thank you, Sean!
30 years later I want a cure. Not a preventative and argument, but a cure!!!
Not just for white gay men but for everybody!
My resolution this year, is to make people realize that people ARE STILL DYING FROM AIDS! My friends who weathered the brunt of the storm have made things like PrEP possible. Not the Long Term Survivors you see on here, or in the news. Not the lucky ones with money and fame and energy and connections to make their lives something to live for, but the thousands of others still in the closet at home: Crying. Depressed. Isolated. Suicidal. Empty. Purposeless. Aging rapidly. Paralyzed by physical and mental issues; one of which is: Living with AIDS SURVIVOR SYNDROME!
My resolution this year is to get them help because between PrEP and Trans issues, issues I too am concerned about. Long Term Survivors, once again, as during our fight for marriage equality have slipped right through the damn cracks and WE ARE STILL DYING. There is no need to exclude us. All three issues can be dealt with at once.
Until there is a cure, we are all just Long Term Survivors.
Sean can be reached here: https://www.facebook.com
December 8, 2015 by Pastor Ingram
If one member suffers, all suffer together with it; if one member is honored, all rejoice together with it. – 1 Corinthians 12:26
Last week many “celebrated” World AIDS Day. I am the sole pastor of a congregation with many challenges, and so I am not able to simply take off. I make time, when I am able.
I was able to put aside an hour or two on Friday, December 4th for a time to get together and support one another. It was publicized. I went over, and set up a circle…and waited. And waited. And waited.
Now mind you, this is not the first time. I have been trying to get some sort of HIV group going in this area for a few years, to no avail…and will continue to do so.
It just stymies me, that no one ever comes out for these events in this neighborhood. It is almost as if HIV doesn’t exist. Or could it be “stigma”?
I sat there in the circle for a minute, and then got up and Spirit said to rearrange stuff…and so I did. I placed one chair at the table, the cross, the water and candle…and waited for Spirit to speak again….and this is what Spirit said:
A young man who was living with HIV for a looooong time…long before I came to St. Michaels, and had left the church for some unspecified notion. When he found out I was here, and that I was living with the virus, he came back. And we would talk. And as his journey progressed, and he was in and out of the hospital, I went to wherever he was. I administered his last rites on one particularly horrendous event. Thank God he came out of that one.
The stories he would tell me about stigma were alarming. Even within his own household. Stories of having an accident in his room, and his room being taped off and treated as a biohazard…stories of being used. Just sad stories of being made to feel less than.
…and yet, he would show up on Saturday morning to take the men out to a particular meat store he had a “hook up” with and the owner would provide the men with meat to take home. Sometimes he used his own resources to provide for the ‘men’ of the community meal.
Eventually Ernest was placed in a nursing home…and even there, I encouraged and helped him to lead bible studies to the residents. During our talks, he always expressed the desire to go out with me and share his testimony. When he realized that was not going to happen, he asked me to write about him.
Ernest died a few years ago. His service was to be at St. Michael’s, and I had even gotten a few of my FB HIV Support Group to come out and support, but when the family got an inkling that I might talk about HIV, they stopped the service, and had it somewhere else. Where? They never shared the location with me.
I think it was one of the most painful experiences I’ve had.
….who was so happy to be of service to others, especially the menfolk, whom he could probably identify with, being down and out, he made sure they had a piece of meat they could take home.
…who was so happy to bring the word of God to others in the nursing home and living under less than ideal situations.
We bumped heads often, but I rejoiced with him….and I suffered quite a few times with him: when he went into a coma, as his personhood was diminished, as his family situation deteriorated…I suffered with him, as I listened to his stories.
…And so, it was somewhat of a surprise as I sat in the quiet of the fellowship hall, hoping for an HIV Support Group to appear, that Ernest would appear instead…to be my support.
To encourage me to go on, and not to let appearances distract me. That my voice is being heard, that my actions reflect my care for the community when it comes to HIV; and to stay the course…
…to continue rejoicing with others and suffering with them as well. Our Creator has given us more than enough grace to carry this through…
Grace will lead us home….
…who is on the other side of your table, encouraging you from the other side?
Amen and thank you, Ernest R. – Here’s to you!
December 1, 2015 by Pastor Ingram
Y’all know what day it is!? You should…it’s been going on for 27 years!
Today is World AIDS Day!
So, we all gather in some spaces and places and pin a red ribbon to our lapels or shirts, and:
we sit…and wonder…
we sit…and hope…
we sit…and give thanks.
we sit … and light a candle
we sit … and shed tears.
Or in my case…we sit and write.
…and on any given day, my writing may reflect the wonder and the hope and the thanks and the tears and the sadness…or the joy of being a long term survivor!
But today, right at this moment: I think of 34 years (27 of them living with HIV, myself) and I get angry.
My God, we had hoped to be done with this by now…
People are still contracting this disease…why?
I know I have enough condoms to share with this community for a long time!
It has been delegated to a ‘chronic’ disease…why?
— To placate us, to take the edge off the enormity of all the unseen issues going on in our bodies? To keep the pharmaceutical companies rich?
We do what we can, and we receive affirmations and accolades…we write our hearts out…
…but it doesn’t take away from the truth of the matter.
Truth is: HIV is still here.
Happy World AIDS Day. Never Forget….sound familiar?
Viscerally yours….Pastor Ingram
December 1, 2015 by Pastor Ingram
So this year, I was chosen, as one of Poz’ magazine’s 100 Long-term Survivor List … and I guess, oddly enough you can say that I am very grateful. Twenty-seven years of living with this disease is nothing short of miraculous; but the miracle goes way beyond me, way beyond those living today. I feel the recognition belongs to many other people.
People like those who contracted this disease in the early 80’s who had no idea what they were up against. They had to fight for understanding, those foot soldiers of ACT UP, who fought the government for action and answers. They deserve thanks for paving the way for us with their very lives.
For the Poz Survivors List event, I was asked to share a little about my life… so I will just say this: my childhood sexual trauma began the ball of confusion. I am a survivor of domestic violence, 27 years in recovery for crack and alcohol, I have been homeless for a time and I am living with depression and anxiety. As I told my bishop upon applying for seminary: “There’s no shame in my game”. That’s a very important component of living positively with HIV… there has to be no shame. Shame in and of itself can be a killer: a killer of the spirit, a killer of any semblance of positive thinking.
I received my diagnosis after my husband died of an AIDS-related complication. I contracted HIV from being homeless and living in the streets. After receiving my diagnosis, it took me quite a few years to internalize and accept. You see, I self stigmatized myself. I thought of myself as contaminated and dirty. As Charlie Sheen stated the when he came out: “HIV is a hard 3 letters to absorb”.
A hard 3 letters to absorb indeed!
When Charlie came out, a lot of activists were busy trying to rectify the language the media was using on social media. Such stigmatizing language hasn’t been heard since the beginning of this fight. It was heart wrenching to see that people still had horrific things to say. No one deserves HIV.
I must admit that I do not know Charlie Sheen. I don’t condone his public life and choices he has made. But hey, that’s Charlie’s life. I don’t like how he talks about sex workers; basically vilifying and demonizing them. I don’t condemn Mr. Sheen for things he has inadvertently said… this early in the game, he probably doesn’t know better himself. We all have made bad choices. For whatever reason Mr. Sheen came out, it can be viewed as ‘a positive’ for our community.
He is a public figure and as he says: “I have a responsibility now to better myself and to help a lot of other people.” Time will tell if he lives up to his responsibility as a spokesperson in the HIV field. For that reason, I stand behind Charlie Sheen (some of his remarks, not withstanding).
But I digress…
How does it feel being a long-term survivor? It has been 34 years of fighting stigma, fighting fear and rejection, fighting stereotypes, fighting against the perceptions and expectations of others “moral values”.
Because I am a person of the cloth, I particularly pay close attention to how we are treated in the religious institutions. The religious institution has done a lot of damage to our community. To many communities; myself included.
Many fear the church because some people in the “church” have yet to fully understand what Jesus means when he said to “love one another.” Some in the church play at compassion while hiding behind what I call the “sanctimonious flapping of lips”doing whatever they need to do publicly to “show that they are doing something”, but really doing nothing — instead worrying about the sexual behaviors of those who dare to disclose their status. I must say this is not the church on a whole….and yet…I hear stories.
“Longterm survival” for the most part, has been 34 years of dealing with ‘society’s feelings’, while WE were and are the ones fighting for our very lives. Many are still living in secrecy.I give thanks for my husband. His shame propelled me to be as transparent as possible, and to be a vessel of people’s shame.
My longevity can be attributed to the medication we have access to. I began my treatment with that monster drug AZT. I give thanks for being able to go from 13 pills twice a day to 3 pills once a day. I give thanks for my family. One cannot walk this journey without some sort of support. My family has supported me and has learned as much as they can from day one. I also give thanks to my Facebook family of HIV positive brothers and sisters. I have two groups, one open and one secret.
Living with HIV this long, simply means doing what I need to do to live, having a great relationship with my doctor, and my therapist who helps me with issues from my childhood, and integrating the different parts of me, into the whole of who I am.
I get strength from helping others along the way, remembering how my early days felt. I reach out and make my self approachable to those who are newly diagnosed and filled with that initial fear. I encourage. I let them know that they ARE loved by their Creator, whomever they chose to call it. I remind myself that: “I praise my Creator because I am fearfully and wonderfully made; your works are wonderful; I know that full well” (Psalms 139)
It is by the grace of God I am still here. I know that full well, too!
As we go forward into the next decade, we need for everyone to get tested. HIV is still here, and is not going anywhere. Our special focus along with young people from 13-24, is the 50 and over generation.
I’m supposed to have some inspirational slogan to pass along, which has helped me: “HIV is not a death sentence”: Grab on to life, and live it … and love those you meet along the way”.
For the general public: get tested, know your status. Protect yourself and your partner(s). You can do it.
There’s a 100 (and more!) long-term survivors out here to help you and each other along the way.